Autism in Couple Relationships

Autism in Couple Relationships

Part of the early appeal of dating an autistic person for a person who is not autistic can be a sense that they are different that they have a mind that can grasp astonishing complexity, they are wonderfully attentive, have deep compassion, are fair-minded, are very talented in their field, extremely loyal or different in ways that are intriguing but not yet fully apparent. Indeed the early stages of dating may not indicate the long-term relationship issues that can occur. On both sides, there can be expectations of how a long-term relationship “should” be, each informed by their own culture or way of thinking. We have learned through our vast clinical experience that approaching relationships between autistic and non-autistic individuals can be likened to a cultural exchange programme, where there needs to be understanding and acceptance of each person’s culture for the relationship to succeed. Certainly, this is true in all relationships but it plays out more significantly when one partner in the relationship is autistic.

The early stages of dating may not indicate the long-term relationship issues associated with autism. The autistic partner may have initially camouflaged and suppressed their autistic characteristics to be more attractive to a non-autistic partner. They may have acquired a dating ‘script’ from watching romantic movies and created a ‘mask’ or artificial persona. However, gradually the mask is removed, and it becomes apparent that the autistic partner does not intuitively know long-term relationship skills.

Theory of Mind

Some of the issues in the relationship can be due to aspects of ‘Theory of Mind’, a psychological term that describes the ability to read facial expressions, body language, tone of voice and social context to determine what someone is thinking or feeling. Both partners experience this. We have known for some decades that autism is associated with Theory of Mind difficulties, and these are part of the diagnostic criteria. However, the non-autistic partner can also have difficulty ‘reading’ the inner thoughts and feelings of their autistic partner. This is described as the Double Empathy issue (Milton, 2012). The autistic partner may not express subtle emotions in facial expressions, tone of voice and body language.

In a conversation, the autistic partner can struggle to find the words to express thoughts and feelings due to aspects of interoception and alexithymia. That is the sensory perception of the body signals that indicate emotional states such as heart rate and breathing (interoception) and being able to translate the emotions that you feel or remember into speech (alexithymia). This will affect the ability of the autistic person to disclose their inner world and communicate their feelings. As the relationship progresses, the non-autistic partner will anticipate increasing self-disclosure as a sign of the depth of the relationship and trust. The non-autistic partner must recognise that their autistic partner has genuine difficulty perceiving and communicating their inner world.

Social engagement

Autistic adults can achieve successful social engagement, but this may be by intellect rather than intuition and often with social guidance from the non-autistic partner. Social occasions are mentally exhausting and energy-draining. In contrast, the non-autistic partner may find that social experiences require little mental energy and may create energy. The non-autistic partner may reluctantly agree to reduce the frequency and duration of social contact with family, friends, and colleagues for the sake of the relationship but feel deprived of experiences they enjoy.

The non-autistic partner may also recognise that their autistic partner can engage socially at work but, on returning home, is exhausted and actively seeks solitude or engagement in a hobby or interest as a means of energy recovery. Although the couple lives together, the autistic partner has a diminishing need for social, conversational and leisure time together. An issue for the non-autistic partner is feeling lonely within the relationship.

Communication

One of the consequences of difficulties with Theory of Mind abilities is misinterpreting intentions, such as determining whether a comment or action was deliberately malicious, humorous or benign. This can lead to conflict within the relationship, with either partner being quick to take offence.

Another communication issue is a tendency for the autistic partner to be perceived as overly critical and correcting and rarely providing compliments. They intend to improve their partner’s proficiency and anticipate gratitude for their advice, being unaware of the effect on their partner’s self-esteem. There may also be a reluctance to provide compliments due to not intuitively knowing that in a relationship, the non-autistic partner need for regular approval and admiration and reluctance to give a compliment when their partner is already aware of their achievement.

As the non-autistic partner describes their daily experiences, their autistic partner may not engage in the anticipated degree of eye contact and words, sounds, and gestures of compassion and interest. The autistic partner absorbs the story but does not appear attentive and is eager to provide practical advice rather than non-judgemental listening and empathy. The non-autistic partner can feel they lack emotional support but experience considerable practical advice.

Expressions of love and affection

In a conventional relationship, regular expressions of love and affection are expected. A metaphor for the need and capacity for expressions of love and affection can be that a non-autistic partner has a ‘bucket’ capacity for love and affection that needs to be regularly filled and replenished. In contrast, an autistic partner has an affection ‘cup’ capacity that is quickly filled. The autistic partner may be perceived as not expressing sufficient affection to meet the needs of his or her partner, who feels affection deprived and unloved, which can contribute to low self-esteem and depression.

When the autistic partner recognises the value of expressions of love and affection in the relationship, there can be the issue of the frequency, type, intensity and duration of expressions of love and affection. As an autistic partner said: ‘We feel and show affection but not enough and at the wrong intensity’ and “I know I am not meeting her needs, but I don’t see them, will I ever be able to make my partner happy”. A non-autistic partner gradually realised that “…he can’t give me my needs because he doesn’t see them, he doesn’t perceive them and doesn’t ask about them… I often feel alone in our relationship because he’s not quite with me” (Smith et al., 2021)

Emotion repair

During personal distress, when expressions of empathy and words and gestures of affection would be expected as an emotional restorative, the autistic partner may not read the signals to elicit emotion repair (Theory of Mind) or know and have confidence in what to do. Their emotional repair mechanisms may be solitude and engaging in their interests and hobbies as a thought blocker. Affection may not be perceived as an emotion repair mechanism, with a hug perceived as an uncomfortable squeeze which does not automatically make them feel better. A typical comment of the non-autistic partner is that hugging their autistic partner is like ‘hugging a piece of wood’. The person does not relax and enjoy such close physical proximity and touch.

Being alone is often the primary emotional repair mechanism for an autistic partner, and they may assume that is also the case for their non-autistic partner, with the thought that if I leave her alone, she will get over it quicker. They may also not know how to respond or fear making the situation worse, as in the relationship counselling session where an autistic partner sat next to his wife, who was in tears. He remained still and offered no words or gestures of affection for emotional repair. When asked if he knew his wife was crying, he replied, “Yes, but I didn’t want to do the wrong thing.”

The autistic partner can be accused of being callous, emotionally cold and lacking empathy due to a genuine difficulty reading interpersonal signals and knowing how to respond. The non-autistic partner gradually realises that they need to be very clear and direct in expressing their feelings and suggesting to their partner what they need to do for emotion repair.

Intimacy

There may be issues associated with verbal, emotional and physical intimacy. The effects of alexithymia will inhibit verbal and emotional intimacy, that is, converting thoughts and feelings into speech. However, an autistic partner may be able to express their thoughts and feelings indirectly using music, poetry, a scene from a movie, a passage in a book or typing rather than speaking their thoughts and feelings.

Sensory sensitivity may affect physical intimacy, leading to confusion, distress, and frustration with sexual experiences for an autistic partner (Gray et al., 2021). Autism is associated with a low or high threshold for sensory experiences, especially tactile experiences. A low threshold can lead to experiencing discomfort or pain when lightly touched during moments of intimacy. A high threshold can lead to requiring greater physical stimulation, as in the comment from the Gray et al. research paper, “I am not particularly sensitive, so I need more friction to achieve orgasm”. There may also be the issue of the use of drugs and alcohol, as in another comment from the same research study. Only when I am drunk do I feel comfortable being touched or touching others.

There can be issues with the frequency and quality of physical intimacy, which influences sexual satisfaction (Boling, 2016). Sex can become an intellectual interest for an autistic partner in acquiring information on sexual diversity and activities, often from pornography, and sex may function as a means of self-calming and emotion regulation. This was described by one of the participants in the Gray et al. (2021) study “I went through this highly sexualised phase because I just loved the way orgasms made me feel and connected me to myself and centred me. It was like the best self-regulation strategy I had found” The desire for and frequency of sexual activities and experiences may not be reciprocated by the non-autistic partner.

However, from our extensive clinical experience, the non-autistic partner is more likely to be concerned about the lack of sexual desire rather than an excess. The autistic partner may become asexual once he or she has children. In a relationship counselling session, the partner of an autistic man was visibly distressed when announcing that she and her husband had not had sex for over a year. Her autistic husband appeared confused and asked, “Why would you want sex when we have enough children?”

Partnership

In modern Western society, we have replaced the word husband or wife with the word partner. This reflects changing attitudes towards long-term relationships. There is an expectation of sharing the workload at home, for domestic chores and caring for the children, and being each other’s best friend regarding the disclosure of thoughts and feelings, reciprocal conversation, sharing experiences and emotional support. Taking on the role of a best friend is not easy for an autistic partner to achieve due to having lifelong difficulties making and maintaining friendships.

For those autistic adults who have problems with executive function, that is, organisational and time management abilities, distractibility and prioritisation, procrastination and completing tasks, the non-autistic partner often takes responsibility for the family finances, ensuring jobs are completed and resolving the organisational and interpersonal problems that have developed in their partner’s work situation. The non-autistic partner takes on the executive secretary/ mother role, frequently prompting their partner on what to do (Wilson et al., 2014). This aspect of the relationship adds to the stress and responsibility of the non-autistic partner and can be a source of conflict in the relationship.

Conflict management

In any relationship, there will inevitably be areas of disagreement and conflict, such as having different parenting styles. Unfortunately, autism is associated with a developmental history of limited ability to manage conflict successfully. The autistic partner may not be skilled in negotiation, accepting alternative perspectives, agreeing to compromise, and the art of apology and may tend to hold and ruminate over grudges. This can be due to difficulty with understanding the thoughts, feelings and perspectives of others, a central characteristic of autism and limited experiences of childhood and adolescent friendships where these abilities are practised. Effectiveness in resolving conflict is a factor in relationship satisfaction for both the autistic and non-autistic partner (Bolling, 2016).

Emotion management

Autism is associated with experiencing strong emotions, especially anxiety, anger and despair and difficulty coping with stress at work and home. (Attwood 2006). There may be issues in the relationship regarding anxiety because the autistic partner can be very controlling, and life for the whole family is based on rigid routines and predictable events. There may be concerns regarding anger management and the risk of physical and psychological abuse (Arad et al., 2022), and both partners may be vulnerable to being depressed (Arad et al., 2022; Gotham et al., 2015). The relationship may benefit from assessing specific mood disorders and appropriate treatment and professional support.

Mental and physical health

Surveys of the mental and physical health of couples where one partner is autistic indicate that the relationship has very different health effects for each partner (Arad et al., 2022; Aston, 2003). Most autistic male partners considered that their mental and physical health had significantly improved due to the relationship. They stated they felt less stressed and would prefer to be in the relationship than alone.

In contrast, most non-autistic partners stated that their mental health had significantly deteriorated due to the relationship. They felt emotionally exhausted and neglected, and many reported signs of clinical depression (Lewis, 2017). A sense of grief may be associated with losing the hoped-for relationship, as illustrated by the comment, “It’s not only what I’ve lost, it’s what I’ve never had… (Millar-Powell & Warburton, 2020). Most non-autistic survey respondents also stated that the stress associated with the relationship had contributed to a deterioration in physical health.

Thus, we increasingly recognise the potential benefits of couples engaging in relationship support and counselling, which focuses on assisting their clients in identifying each other’s needs and how best to meet them (Yew et al., 2023).

References

Arad, Schectman and Attwood (2022). Journal of Psychology and Psychotherapy 12

Aston (2003) Asperger’s in Love: Couple Relationships and Family Affairs London, Jessica Kingsley Publishers.

Attwood, T. (2006). The Complete Guide to Asperger’s Syndrome London, Jessica Kingsley Publishers.

Bolling (2026) Asperger’s Syndrome/Autism Spectrum Disorder and marital satisfaction: a quantitative study Antioch University, New England.

Gotham, Unruh and Lord (2015). Autism 19

Gray, Kirby & Holmes (2021). Autism in Adulthood 3

Lewis (2017) Journal of Marital and Family Therapy 43

Millar-Powell and Warburton (2020). Journal of Relationship Research 11

Milton, D. (2012.) Disability and Society 27

Smith et al., (2021) Journal of Autism and Developmental Disorders 51

Wilson, Beamish, Hay & Attwood (2014). Journal of Relationship Research 5

Yew, Hooley & Stokes (2023). Autism in press.

Autism and bullying: new developments in research and support

Autism and bullying: new developments in research and support

Why are autistic students so frequently the victims of bullying? From our extensive clinical experience, the answer is that they are perceived as easy victims due to often being alone and not having a group of friends for protection, having the posture and body language of someone insecure and vulnerable, and having low self-esteem and social status, as well as being perceived as a relatively ‘soft target’, i.e., someone unlikely to be assertive or able to retaliate in a way that could cause discomfort to the ‘predator’.

Due to difficulties with social reasoning and Theory of Mind abilities, they may also lack the ability to determine if an action or suggestion was deliberate or accidental, whether teasing is friendly or malicious and the difference between humour and insult. Bullying can occur for autistic students of all ability levels, including children attending a special school (van Roekel, Scholte and Didden 2010). The study found that autistic adolescents who were frequently bullied sometimes misinterpreted non-bullying situations as bullying. They had become over-sensitised and quick to react without analysing intentions.

They may also lack conflict-resolution skills and be a source of entertainment when distressed. Recent research has added two more reasons: not being optimally tuned to social situations and resisting change (Forrest, Kroeger and Stroope (2020). The resistance to change means that the autistic student’s reaction and response are predictable, with difficulty acquiring more effective responses. Their intense emotional reaction also encourages the child who engages in bullying (Cappadocia et al, 2012).

The prevalence of being bullied

A study of over 1200 parents of autistic children explored the prevalence of their child being bullied over a one-month period. 38% of the children were bullied occasionally, with a further 28% being bullied frequently. Thus, most autistic children experienced some form of bullying over the month (Zablotsky et al., 2013). A study by Schroeder et al. (2014) confirmed high rates of bullying for autistic students, with 40% of their autistic research participants experiencing daily victimisation and a further 33% experiencing victimisation two to three times a week. A study by Fisher and Taylor (2016) of autistic adolescents found a prevalence of peer victimisation of 73%, with a prevalence of only 10% in non-autistic adolescents.

The signs of being bullied

The signs of being bullied can be very subtle, such as peer rejection, fewer birthday party invitations, or being picked last for team sports (Kloosterman et al., 2013; Schroeder et al., 2014) Other subtle expression of bullying are poking and having shoe laces tied together (Fisher & Taylor, 2016).

There may be physical evidence, such as lost or damaged possessions, or torn clothing, and medical evidence, such as bruising, injuries, stomachache, headaches and difficulty getting to sleep. Psychological evidence includes increased anxiety, especially before school, depression, school refusal and responding violently to bullying leading to suspension. There can also be signs of a lack of trust in peers, even paranoia, and a change in the special interest to a fascination with weapons and violent films with drawings of retribution and retaliation.

When parents ask about experiences of bullying at school, there may be a reluctance to disclose those experiences as disclosure means re-experiencing the emotions. There may also be aspects of alexithymia such that the autistic child or adolescent has considerable difficulty describing their thoughts and feelings about being bullied using conversational speech.

Assessment of being bullied

A new bullying experiences assessment instrument has been designed for autistic children and adolescents (Morton et al., 2022). The 22-item Assessment of Bullying Experiences (ABE) assesses verbal, physical, relational, and cyber victimisation using examples of bullying experiences that include:

  • Name-calling
  • Taunting
  • Teasing
  • Mocking or mimicking
  • Direct: hit, push, shove
  • Indirect: hit, push, shove
  • Damage possessions
  • Group exclusion
  • Ignored
  • Exclusion from an online group
  • Online impersonation
  • Social media insults
  • Spreading rumours
  • Held down or restraint
  • Physically take an object
  • Knock food/item from hands
  • Teased for joining a group
  • Provoked to have an outburst
  • Hurtful digital messages
  • Hurtful post online
  • Embarrassing photo/video

The assessment includes direct interpersonal bullying experiences at school and on social media. Home may not be a sanctuary from bullying in terms of cyberbullying and bullying from siblings.

We now have a new web-based touchscreen app to assess self-reported trauma exposure and symptoms in autistic children aged 8-14 (Hoover & Romero, 2019). The app has eight trauma exposure items, including bullying and teasing.

Disclosure of being bullied and support

A range of potential responses to bullying includes seeking help from teachers, friends, classmates, and parents and coping alone (Humphrey & Symes, 2010). When telling a teacher, the question can arise of which teacher or teacher assistant to tell and whether the teacher can or wants to rectify the situation. We have found that there can also be the issue of peer disapproval for disclosing bullying to teachers. Class peers may consider ‘dobbing’ a fellow student as a greater social ‘crime’ than reporting the bullying. Autistic students are more likely to confide in a friend if the friend is perceived as being able to do something about the situation or has some social influence over the bully.

Parents are often the last resort in terms of support, sometimes due to feeling uncomfortable having their parents involved in their school life and parents being perceived as unable to provide support during and immediately after being bullied. Research suggests that parenting stress also affects the likelihood of disclosing bullying to parents (Weis et al, 2015). When parents had low levels of stress, and there was open communication on problems at school, bullying could more easily be disclosed. In families that experienced high levels of stress, disclosure is less likely.

Coping alone often occurs with responses varying from ignoring the bullying and just walking away to acts of violence being seen as the only course of action to stop the bullying. Intervention strategies must include exploring and using a more comprehensive range of responses when violence has proved effective.

The effects of being bullied

As clinicians, we know the psychological effects of bullying are devastating, contributing to a range of mental health problems. It is a major cause of school refusal and suspension, often because the victim has become angry and reluctantly retaliated (Bitsika, Heyne and Sharpley 2021). It can contribute to developing an anxiety disorder due to constant fear of a bullying ‘attack’ or ambush each day and knowing there is no way to prevent such painful emotional experiences. The derogatory and provocative comments and actions may be internalised and believed by the victim, contributing to low self-esteem and clinical depression (Kim & Lecavalier, 2021; Ung et al., 2016) and suicidality (Halloran, Coey and Wilson, 2022). As so many interactions with peers are associated with being bullied, and so few positive social interactions are experienced, a sense of paranoia can develop based on the reality of their interactions with peers at school.

We increasingly recognise that one of the reasons for camouflaging or masking autism is to avoid being bullied (Cage & Troxell-Williams, 2019; Chapman et al., 2022). We also recognise a link between bullying and the development of Anorexia Nervosa (Brede et al., 2020) and gender dysphoria (Chang et al., 2021).

By being so sensitive to frequent bullying and having difficulty reading the intentions of others, an autistic child or adolescent may not be able to differentiate between friendly and unfriendly teasing, which can inhibit the development of a true friendship. Also, others may create a distance between themselves and the autistic student to avoid becoming targets themselves. This adds to a sense of loneliness and rejection. The autistic student may have few friends to provide protection and safety in numbers and have friends to calm the anguish and dissolve the despair, with no words or actions of support and compassion to create greater self-esteem and put the event in perspective. Thus, the effects of bullying go deeper and last longer for autistic students than non-autistic students.

Strategies to reduce experiences of being bullied

Research has confirmed our clinical experience that if peers intervene, over 50% of bullying episodes will stop (Cappadocia et al., 2012). Peers need to be educated about the effects of bullying on autistic students and actively encouraged to intervene. There will also be benefits in extending an autistic student’s social network to be less isolated and a more identifiable target and being able to call on the support of their friends (Hebron & Humphrey, 2014).

A study by Etherington (2007) evaluated the creation of a team of peer supporters for an autistic year eight student. The school chose six students, including two boys who were notorious for bullying the autistic student and two girls who had previously been socially supportive. A six-session training programme in support techniques and mentoring was held on a weekly basis during lesson time. A plan was agreed upon to provide support during break times. The team members recognised that sometimes the autistic student wanted to be alone during the breaks, and he could opt into or decline companionship. The peer supporters set up a rota to take turns to be ‘on call’ at each break. There was a significant reduction in the number of reported incidents with the following comments from the autistic student:

“Now I’ve got my peer supporters, I don’t feel alone anymore. I don’t keep thinking I’m going to get into trouble or do the wrong thing. I’m not frightened or anxious about coming to school anymore.

My peer supporters have really helped me. I can talk to them, and they will help me to know if what I am doing is appropriate. Sometimes I don’t know if people are trying to be unkind to me but I can ask one of my support group and they can tell me.

Once, this girl asked me to stand on a bench and sing a song. I did it, but I think she wanted to humiliate me. I asked one of my supporters. He said I shouldn’t do what people tell me to do if it makes me feel bad inside. I should just say no and walk away. I think he is right. I think I can trust him.”

Carol Gray (2010) has explored bullying using Social Stories on themes such as:

What is bullying?

Bullying: What to think, say and do

My team

Learning to respond to bullying

We have also found that her strategy of Comic Strip Conversations can help teachers and parents explore the autistic child’s perspective of events and explain the thoughts and motivations of those who engage in bullying. Parents and teachers can access literature and resources on bullying and autism, such as No Fishing Allowed: Reel in Bullying (Gray & Williams, 2006) and the books on bullying published by Jessica Kingsley publishers www.jkp.com

We now have social skills video games such as the Secret Agent Society specifically designed for autistic students, which includes components on managing bullying (Beaumont et al, 2021). We also have resources to improve online safety for autistic children and teenagers (Lonie, 2015).

Bullying can result in signs of trauma, and Eye Movement Desensitization and Reprocessing (EMDR) has been confirmed as an effective treatment for trauma in autistic adults (Lobregt-van Burren et al 2019).  The study found that 50% of participants had flashbacks of school bullying. EMDR could be considered for an autistic child or adolescent who has been traumatised by bullying.  

 

References

Beaumont et al. (2021). Journal of Autism and Developmental Disorders 51, 3637–3650.

Bitsika, H. & Sharpley (2021). Journal of Autism and Developmental Disorders 51, 1081–1092.

Brede et al. (2020). Journal of Autism and Developmental Disorders 50, 4280-4296

Cage & Troxell-Williams (2019). Journal of Autism and Developmental Disorders 49, 1899-1911

Cappadocia et al. (2012). Journal of Autism and Developmental Disorders 42.

Chang et al (2021) Autism 26 1-14.

Chapman et al (2022) Research in Autism Spectrum Disorders 99 102069

Etherington (2007) Good Autism Practice 8, 37-44.

Fisher and Taylor (2016) Autism 20, 402–411.

Forrest, Kroeger and Stroope (2020). Journal of Autism and Developmental Disorders 50, 560-571

Halloran, Coey and Wilson (2022) Clinical Psychology Review 93.

Hebron & Humphrey (2014). Autism 18.

Hoover & Romero (2019). Journal of Autism and Developmental Disorders 49, 1686-1692

Humphrey & Symes (2010). Journal of Research in Special Educational Needs 10, 82–90.

Kim and Lecavalier, (2021) Research in Autism Spectrum Disorders 88

Kloosterman et al (2013) Research in Autism Spectrum Disorder 7, 824-832

Lobregt-van Burren et al (2019). Journal of Autism and Developmental Disorders 49, 151–164.

Schroeder et al (2014) Journal of Autism and Developmental Disorders 44

Ung et al (2016) Research in Autism Spectrum Disorders 32, 70-79

van Roekel, Scholte and Didden (2010) Journal of Autism and Developmental Disorders 40, 63-73

Weis et al (2015) Autism Research 8, 727-737.

Zablotsky et al (2013). Journal of Developmental and Behavioral Pediatrics 34, 1-8

 

Resources

Gray C. and Williams (2006) No Fishing Allowed: Reel in Bullying Student workbook and teacher manual. Arlington, Future Horizons

Gray C. (2010) The New Social Story Book Arlington, Future Horizons

Lonie, N. (2015) Online Safety for Children and Teens on the Autism Spectrum: A Parent’s and Carer’s Guide London Jessica Kingsley Publishers

Secret Agent Society www.sst-institute.net

The dating game and Autistic adolescents

The Dating Game and Autistic Adolescents

Typical teenagers are usually enthusiastic about going beyond friendship and experiencing the dating game. They are exploring their new sexual awareness, who they find attractive, and who is attracted to them. Their romantic and sensual experiences become a major topic of conversation with peer advice on the ‘rules’ of the dating game. Our clinical experience suggests this may not be the case for autistic teenagers. They may be delayed by several years in being interested in a romantic relationship and have difficulty resonating with their peers’ interest in dating. They are also often socially isolated and may not have a circle of friends who discuss and disclose information on dating and sexuality.

In order to participate in the dating game, it is important to read subtle non-verbal communication that indicates mutual attraction and explore one another’s expectations in a romantic relationship. Typical teenagers understand dating conventions from intuition, observation and discussion with their peers. When dating, both partners progress along the relationship continuum at a reciprocally agreed and mutually enjoyed pace. Typical adolescents have considerable experience with many friendships, developing conflict management strategies and the art of compromise. They also know how much time to spend together and communicate through social media.

Autistic adolescents often need guidance and support in each of these dimensions.

Reading body language

There are many subtle ways that body language can indicate an interest in someone, such as the head tilted to one side, which means I am listening, nodding to indicate agreement or approval, smiling to indicate feeling happy with the conversation and looking at the other person’s face, especially the eyes to read the person’s feelings. There are other ways to tell that someone is interested in or likes someone, such as going out of their way to engage in a conversation, wanting to sit together and often giving compliments to the person they like. It is also important to know when body language expresses not interested such as frequently looking away, avoiding eye contact and a ‘closed’ body posture and flat facial expression.

A characteristic of autistic adolescents is difficulty accurately reading the intentions and personalities of their peers. Someone’s act of kindness may be interpreted as meaning more than was intended. Some personalities frequently engage in touch during a conversation due to their culture which may not be a sign of seeking a romantic attachment. Typical teenagers often have friends they can consult regarding the intentions of a potential dating partner.

Attraction

It is important to explore what aspects of personality, abilities, and appearance are attractive when seeking someone to date. There are differences in what adolescent girls and boys may seek. There is a general convention that girls may have a greater emphasis on personality and ability attributes and boys on physical attributes. When we have discussed attraction with autistic teenagers this convention can be maintained, but we have found that attributes such as intellect, being accepted and understood, sense of humour, and similar interests have been rated as more important for autistic than typical adolescents.

Asking someone for a date

An autistic adolescent may rehearse and need guidance on asking someone on a date or responding to an invitation for a date. They need to consider where the date will be and who may also be there. Autistic adolescents may be naïve, trusting, and unaware of being in a potentially risky situation.

There are also aspects of what to wear on a date, topics of conversation and knowing if the date is mutually enjoyable.

The development of a romantic relationship

A romantic relationship may evolve into disclosing deeper and more personal inner thoughts, emotions, and experiences. Some autistic adolescents may have alexithymia which is difficulty disclosing and explaining inner thoughts and emotions through speech. Their romantic partner may be concerned that self-disclosure may not have the same degree of depth and reciprocity.

The agreed ‘balance’ of touch, affection, and sensual experiences can be an issue. An autistic adolescent may need guidance on these aspects of a romantic relationship as a characteristic of autism can be a sensitivity to tactile experiences, especially those that may occur with gestures of affection and may extend to sensual and sexual experiences (Gray, Kirby and Holmes 2021) There is also the potential issue of reading the signals and context when the typical partner anticipates gestures and words of affection and compassion. There will need to be open communication and mutual understanding.

There may also be an issue of recognising the human sexual response for both partners and education with regard to sexuality (Attwood, 2008; Dekker et al 2017; Hartman 2014; Henault 2006 Visser 2017)

As the relationship progresses there could be concerns with regard to the amount of time spent together and communication on social media. There is potential for the enthusiasm of one partner to be perceived as too intrusive and intense, with a risk of them ‘wearing out their welcome’. Guidance from peers and parents can be very helpful.

The experience of love

A characteristic of autism is having difficulty perceiving and regulating emotions. Clinically we tend to focus on feelings of anxiety, sadness and anger, but love is a feeling. We have developed a programme From Like to Love to help young autistic children understand, express and enjoy love and affection with family and friends (Attwood and Garnett 2013). Many strategies apply to autistic adolescents embarking on the dating game, with age-appropriate adaptation, which includes expressions of love that are perceived as inappropriate or too intense, such as accusations of stalking (Post et al 2017)

An autistic teenager may also experience high levels of anxiety when meeting and being with a person towards whom they have strong feelings of affection and ruminate on their social/romantic performance. They may need guidance in coping with the emotion of love and anxiety.

Knowing the relationship is going well or not well

There are signs that the relationship is going well, such as both partners being happy to see each other, having a genuine interest in each other’s experiences, thoughts and feelings, smiling, laughing and having fun together with each feeling free to be their natural self and feeling safe and relaxed.

There is also the question of knowing the signs that the relationship is not going well. These negative signs may be the opposite of the positive signs described above, such as being critical and finding fault. We have found that another sign is one of the partners being possessive or controlling.

Adolescent romantic relationships often have a ‘use by date’ and may last from days to months and occasionally years. Adolescents may experience the ending of a relationship several times; sometimes, it is their choice, and sometimes not. There are many ways of ending a relationship; if an autistic person makes that decision, they will need guidance on how to do that appropriately. If the decision is from their romantic partner, they will experience rejection which may be reminiscent of rejection from previous friendships or romantic relationships. There will need to be time and support for recovery, to move on and not ruminate on the relationship, and to acknowledge what has been learned about the dating game from the relationship.

Long-term relationships

The focus has been on the dating game in adolescence, when romantic relationships may have a limited duration. However, many characteristics of autism contribute to a successful long-term relationship. These include kindness and a sense of social justice, loyalty and integrity, ability in a chosen career in science, technology, the arts and caring professions, passion for knowledge, and maternal and paternal abilities.

References and resources

Attwood S. (2008) Making Sense of Sex: A Forthright Guide to Puberty, Sex and Relationships for People with Asperger’s Syndrome. Jessica Kingsley Publishers

Attwood and Garnett (2013) From Like to Love Jessica Kingsley Publishers

Dekker et al (2015) Journal of Autism and Developmental Disorders 45 (6)

Gray, Kirby and Holmes (2021) Autism in Adulthood

Hartman D. (2014) Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorders Jessica Kingsley Publishers

Henault I. (2006) Asperger’s Syndrome and Sexuality. Jessica Kingsley Publishers.

Post et al (2014) Journal of Autism and Developmental Disorders 44:11

Uhlenkamp (2009) The Guide to Dating for Teenagers with Asperger Syndrome Autism Asperger Publishing Company

Visser, K et al., (2017) A randomized controlled trial to examine the effects of the Tackling Teenage psychosexual training program for adolescents with Autism Spectrum Disorder. Journal of Child Psychology and Psychiatry 58:7, (2017) pp 840-850

Understanding empathy and autism

Empathy

We know that there are three forms of empathy, cognitive, affective, and behavioural and that the expression of each is underpinned by similar and different neurological structures in the prefrontal cortex. Cognitive empathy is the ability to determine what someone is feeling or thinking by ‘reading’ their facial expressions, gestures, vocal tone, and social context. An autistic person may need to use intellect rather than intuitive abilities to identify and process nonverbal communication that they see and hear. Affective or emotional empathy is the ability to ‘feel’ the emotions of others. A recurring theme from our clinical experience of talking to autistic teenagers and adults and reading autobiographies is an over-sensitivity to the negative feelings of other people. Behavioural empathy is knowing how to respond to someone’s feelings. Autism is associated with uncertainty in identifying what is expected to be said or done to alleviate or respond to someone’s feelings.

Emotional empathy

A central characteristic of autism is difficulty knowing how to read and respond to the emotions of others (Schwenck et al 2012). However, clinical experience indicates that there is a hypersensitivity to feeling another person’s negative emotions such as disappointment, anxiety or agitation. Autistic individuals have a remarkable capacity to mirror, or amplify within themselves, how another person feels (Fletcher-Watson and Bird 2020). As one of the participants in that study said, “We express empathy differently.” This capacity has been described as empathy over-arousal (Smith 2009) and occurs in both autistic males and females (Schwenck et al 2012).

We have yet to determine how this capacity is achieved but quotations from autistic adults may provide some indication.

I am able to distinguish very subtle cues that others would not see, or it might be a feeling I pick up from them.

There’s a kind of instant subconscious reaction to the emotional states of other people that I have understood better in myself over the years.

Emotional empathy can occur with all expressions of autism. Robert Hughes (2003) wrote about his non-speaking autistic son, Walker whom he described as being a “supersensitive emotional barometer who registered the true emotional pressure in the air, no matter how hard we tried to mask it”.

Exteroception

We have long recognized that a characteristic of autism is an extraordinary perception of sensory experiences from the external world which we describe as exteroception sensitivity. This can be a heightened sensitivity to sounds, light intensity, tactile experiences, aromas, and tastes. We speculate that exteroception may include a sensitivity to the emotions of other people. An extraordinary ‘sixth’ sense can be a response to being with someone who is experiencing negative emotions, but also responding to suffering on television news and in documentaries far more than is typical.

In contrast to heightened exteroception, an autistic person can have difficulty with interoception, that is perceiving their own internal sensory experiences, such as not being consciously aware of increasing heart rate and breathing that indicate rising anxiety or agitation. In his autobiography, Aaron Wahl (2019) wrote “I perceived the feelings of others often overly clear but could not find access to my own”.

Negative and positive emotions

Our clinical experience indicates that there is an extraordinary perception and sensitivity to another person’s negative emotions, as in the comment If someone approaches me for a conversation and they are full of worry, fear or anger, I find myself suddenly in the same state of emotion. Negative emotions in others are ‘infectious’ to an autistic person. One of our clients’ said Emotions are contagious for me. Emotional empathy may be one of the reasons why autistic individuals avoid crowds due to the risk of proximity to someone who is experiencing a negative mood and being ‘infected’ by that mood.

As psychologists, we often try to determine why an autistic person experiences a negative emotion, and one of the reasons may not be due to a specific event or thought but being ‘infected’ by someone’s negative feelings. This may also contribute to a characteristic of autism of avoiding eye contact since the eyes convey feelings (Smith 2009).

Social withdrawal for an autistic person is not exclusively due to social expectations and sensitivity to auditory, visual, and tactile experiences. Lilian said We don’t have emotional skin for protection. We are exposed, and that is why we hide. The sensitivity to the negative mood of others can lead to wanting everyone to be happy.

While we have found that someone’s negative mood can be contagious for an autistic person, they may not be equally ‘infected’ by someone’s positive mood. They can seem impervious to someone trying to ‘jolly them up’. Happy and exuberant positive emotions in others may sometimes cause an autistic person to be confused and uncomfortable and not know how to respond or resonate with others, for example, at a family celebration or reunion or when someone receives exciting news.

There seems to be a preference for a middle to a neutral range of emotions in others, both negative and positive emotions. If there is any greater intensity, the autistic person may become confused, overwhelmed and unsure of what they are expected to do or say.

Strategies for coping with empathic over-arousal

As clinicians, we help the person create a mental barrier using the metaphor of protection by putting on armour and using a shield or putting up an umbrella for protection from a downpour of emotions. We also use advice from autistic adults who share the same emotional empathy such as an autistic mother who said: We have lots and lots of empathy, but if it’s too much to deal with you have to just shut it off because it’s so overwhelming (Dugdale et al 2021).

We also advise family members and teachers to be aware of how their negative mood can be contagious to an autistic person and we teach strategies to stay calm and neutral to assist their loved one through difficult emotions. Sometimes parents and partners may try to temporarily suppress their feelings, although an autistic person may be able to sense the emotions behind their mask of neutrality.

We encourage autistic people to explain their sensitivity to someone’s mood and that the reason for their temporary withdrawal or avoidance of them is a coping mechanism due to emotional empathy and not a rejection of them as a person.

When an autistic person has difficulties with behavioural empathy, that is knowing how they are expected to respond to the distress of another person, they may need clear guidance and encouragement on what to do or say. This could be to suggest that the autistic person gives you a hug that is within their zone of tolerance or makes a reassuring comment.

We now have programmes to help autistic adults read nonverbal communication (cognitive empathy) and develop verbal empathic comments (behavioural empathy) (e.g., Koegel et al 2016).

We also recognize that increased emotional empathy may be an advantage when being with autistic children and adults by being aware of an autistic person’s tolerance of emotional states in others and adjusting their interactions accordingly. We know of many autistic individuals who thrive in the helping professions due to their high levels of emotional empathy.

References

Dugdale et al (2021) Autism 25, 1973-1984

Fletcher-Watson and Bird (2020) Autism 24 3-6

Hughes R (2003) Running with Walker Jessica Kingsley Publishers

Koegel et al (2016) Improving Verbal Empathetic Communication for Adults with Autism Spectrum Disorder Journal of Autism and Developmental Disorders 46, 921-933

Schwenck et al 2012 Jr Child Psychology and Psychiatry 53:6

Smith, A. (2009) The Psychological Record 59 489-510

Wahl A. (2019) Ein tor zu eurer welt KNAUR

How to create an autism-friendly home

How to create and autism-friendly home

Introduction

As parents get to know the profile of abilities and daily challenges of their autistic child, they make accommodations at home to create an autism-friendly environment. The central characteristics of autism include sensory sensitivity, need for times of solitude, social communication difficulties, engagement in a special interest and difficulty coping with change. Parents know that situations that are enjoyable for typical children can be stressful for an autistic child, such as having visitors to the home and making spontaneous decisions about activities for the day. There is also the likelihood of an autistic child having high levels of anxiety and being sensitive to the ‘emotional atmosphere at home. We will explore each of these characteristics of autism to affirm why the home of an autistic child may at times be different to the home of a non-autistic child.

Sensory sensitivity

Some sensory experiences are perceived as excruciatingly painful by autistic children. This can include sudden or ‘sharp’ noises such as a dog barking, the sound of electrical appliances, the type and intensity of natural and artificial lighting, tactile experiences such as seems and labels in clothing, the taste of some foods and the smell of cleaning products. Parents soon know which sensory experiences are aversive and recognise that for example, if their autistic child cannot tolerate the sound of a vacuum cleaner, to do the vacuuming when the child is at school or out of the house. They may also become aware of how auditory experiences during the night can cause an autistic child to wake up and adjust the child’s meals to accommodate sensory sensitivity associated with food. An occupational therapist may be able to provide advice on sensory sensitivity and adjustments that are needed at home.

Social experiences

Autistic children can enjoy social experiences, but social engagement is achieved through intellectual rather than intuitive abilities. Consequently, socialising with family members and visitors to the home can be mentally and emotionally exhausting. Parents may recognise when their autistic child needs to recover in solitude emotionally and cognitively, perhaps spending time alone in their bedroom or the garden. An autistic child may need guidance in reading social cues and knowing social conventions such as the different types of greetings according to the position of the visitor within the family and cultural expectations. For many autistic children, ‘two are company, three a crowd’ so there may need to be adjustments regarding the number of people in the room or home. Large family gatherings and sibling parties may need careful preparation and monitoring according to the ability and stress level of an autistic child. Parents will need to explain their autistic child’s challenges in social situations to those visiting the home.

Special interest

One of the characteristics of autism is an interest that is unusual in intensity or focus. The interest has many functions including a sense of emotional and intellectual enjoyment, a thought blocker for anxious or sad thoughts, an energiser when energy is depleted, such as when returning home from school and a means of making friends with those who share the same interest. The difficulty for parents is determining what is a reasonable amount of time to engage in the interest. There will need to be a compromise and an autistic child knowing and accepting when and for how long they can engage in their special interest.

Coping with change

Autistic children feel calmer when they experience routines and predictability in the daily schedule of experiences and expectations at home. There can be extreme distress when there are even small changes to their expectations. They have a ‘plan for the day’ and can have difficulty conceptualizing an alternative plan. It is inevitable that there will be unexpected changes in daily routines at home and parents will need to provide advanced information on what will change and why and help the child create a ‘plan B’.  Having too many changes in the day will increase stress levels which could result in an emotional meltdown. Parents tend to manage by planning fewer activities, using visual schedules, and giving advance notice of upcoming changes.

Coping with anxiety

Autism is associated with high levels of anxiety. Unfortunately, due to difficulties with interoception (perceiving internal body signals such as breathing and heart rate) and alexithymia (describing thoughts and feelings in words) an increase in anxiety levels may not be recognised and communicated by an autistic child. However, parents may gradually determine the signs and situations associated with anxiety. In the home environment, they will need to be aware of situations likely to increase anxiety such as specific sensory experiences, change and the unexpected, social expectations and fear of making a mistake. They recognise the child’s fight, flight or freeze reactions to high levels of anxiety and the tendency to refuse to comply with requests when anxious or needing reassurance and the completion of routines and rituals to alleviate their anxiety.

Parents will become aware of strategies to reduce their autistic child’s anxiety by providing reassurance, and information and being calm themselves. They may need advice from a psychologist and paediatrician on the range of activities and treatments available for anxious autistic children. This can include Cognitive Behaviour Therapy which may include meditation, mindfulness, and yoga that can be conducted at home. A paediatrician may consider medication to treat high levels of anxiety.

Managing a meltdown

Sensory, social, and emotional experiences can increase to a level where there is an emotional meltdown. Parents may have experienced an autistic child’s propensity for meltdowns since they were toddlers. There are two types of meltdowns that can occur at home, an explosion of emotional energy that is fuelled by frustration and anger or an implosion of emotional energy that is an expression of intense despair and the potential for self-harm. Parents will learn that during a meltdown they need to inhibit their own distress and be calm and reassuring, affirming, and validating the child’s intensity of emotions and explaining that the intense feelings will eventually go away.

It is also important not to ‘interrogate’ their autistic child as to why they are so angry or distressed.  In such an emotional state they will have difficulty giving a coherent and sequential explanation of why they are agitated. As an autistic child said: When I’m upset, the last thing I want to do is talk to someone. Parents will also learn that a focus on punishment and consequences during a meltdown will not be effective as explained by an autistic child who said: I can hear but my brain can’t process what people say.  After the meltdown parents can explore with the child what happened to create such intense distress and create with the child, a plan to manage similar situations in the future.

Experiencing and expressing affection

An emotion repair mechanism that is very effective for typical children is affection, but affection may not be as effective for autistic children. As an autistic adolescent said: Human comfort has always been a mystery. Parents soon learn to adjust their level of affection as an expression of love and reassurance to a level that is comforting and enjoyable for an autistic child. The level would probably be perceived as insufficient for a typical child but just right for an autistic child. Parents also come to accept that the autistic child’s own expression of love for them may not be at the level of expression they would like to experience. This is due to being autistic not an absence of feelings of love for a parent.

Emotional empathy and sensitivity

A characteristic of autism that we are increasingly recognising is an ability to perceive, absorb and amplify within themselves, negative emotions in others and a difficulty resonating with euphoria being experienced by other family members. A parent may be feeling anxious, agitated, or distressed (perhaps for reasons that have nothing to do with their autistic child) and try to suppress and inhibit their feelings. However, an autistic child can have a ‘sixth sense’ ability to recognise such feelings in others and be distressed themselves and not know either how to separate their own feelings from their parent’s feelings or what to do to repair their parent’s feelings. When parents are aware that this is happening, it is important to suggest to their autistic child what to do practically or emotionally (such as a quick hug) to make a parent feel better.

When there is a joyful family celebration, an autistic child may not be able to resonate with the euphoria of others and seek solitude or everyone return to a subdued emotional state. While parents may be aware of this characteristic of autism, it may need to be explained to visiting family members or family friends.

Social debriefing

Making and keeping friends can be difficult for autistic children and they are vulnerable to bullying, teasing and rejection by their peers. One of the roles of the parent of an autistic child is to provide an opportunity for a social and emotional debrief after school and to explain the intentions of peers and the development of a friendship network.

Coordinating support services

Parents of autistic children often benefit from a multi-disciplinary support team that provides advice on improving abilities and emotion and behaviour management at home and at school. Parents will need to coordinate information and strategies between their support team, teachers, and extended family. This will require the allocation of time for this role.

Daily living skills

Due to difficulties with motor coordination, attention, and planning, the parent of an autistic child will need to allocate more time than for a typical child to encourage daily living skills from learning to tie shoelaces to domestic chores. An autistic child is typically very dependent on external prompts as reminders to complete certain tasks. They also struggle to see “the point” of why they should engage in certain activities, such as household chores or tasks to attend to personal hygiene, because they personally do not care if their room is dirty, or they smell. Reasons for why we engage in these tasks need to be presented with calm and logic.

Summary

Creating an autism-friendly home will require adjustments to family routines and expectations and for parents to spend more time on a range of activities than would be expected with a typical child.  Making changes to both our expectations and the home environment, such as those changes described above, will ultimately decrease the background stress for your autistic child, and thus for the whole family.

Can CBT be helpful for autistic adults?

Can CBT be helpful for autistic adults?

There is considerable research which confirms that a high level of psychiatric conditions co-occur with autism, for example, Lever & Guerts (2016) found a co-occurrence rate of up to 79% and the majority of autistic individuals experience at least one co-occurring mental health condition (Lai et al 2019). Rates of anxiety and affective disorders, eating disorders, psychosis and traumatic stress are higher in autistic individuals than in non-autistic individuals (Hossain et al 2020) The therapy with the greatest empirical evidence for success in the treatment of psychiatric conditions, including anxiety disorders, depression, addiction and eating disorders to name a few, is cognitive behaviour therapy (CBT), but what is CBT and is CBT helpful for autistic adults who are experiencing mental health conditions? In this two-part blog, we firstly define CBT and examine its effectiveness as a therapy for autistic adults. In part two we describe important modifications to CBT which can be helpful when treating autistic adults who experience mental health conditions. Our recommendations are based on our extensive clinical experience and current empirical research.

The origins of CBT

In the 1930s psychologists began to explore aspects of behaviour and learning and Behaviour Therapy (BT) subsequently emerged as a reaction to psychoanalysis by focussing on how external events shape observable behaviour. In the late 1960s, BT included operant conditioning based on identifying the consequences of behaviour such as reinforcement and punishment. Operant conditioning and the functional analysis of behaviour became the basis of Applied Behaviour Analysis, which has many adaptations, including as an early intervention for autistic children.

CBT evolved from BT in the 1970s with the addition of social learning theory and cognitive theory. The cognitive theory emphasises the importance of information processing, including the role of memory and attention, and cognitive or thinking distortions. Social learning theory extended behavioural principles to include that we learn vicariously, by watching and imitating others. CBT accommodates aspects of a person’s cognitive interpretation and processing of events, as well as their capacity to learn by watching others. A central principle of the “C” in CBT  is that cognition and social learning mediate the relationship between life stress and psychopathology. Rigid and distorted beliefs about oneself, the world, and/or the future are explored and modified with CBT. In addition, CBT embraces learning by watching others, role-playing and skill rehearsal. The following definition of CBT from the American Psychological Association (APA, 2022) is helpful:

CBT is based on several core principles, including:

  1. Psychological problems are based, in part, on faulty or unhelpful ways of thinking.
  2. Psychological problems are based, in part, on learned patterns of unhelpful behaviour.
  3. People suffering from psychological problems can learn better ways of coping with them, thereby relieving their symptoms and becoming more effective in their lives.

CBT treatment usually involves efforts to change thinking patterns. These strategies might include:

  • Learning to recognize one’s distortions in thinking that are creating problems, and then re-evaluate them in light of reality.
  • Gaining a better understanding of the behaviour and motivation of others.
  • Using problem-solving skills to cope with difficult situations.
  • Learning to develop a greater sense of confidence in one’s abilities.

CBT treatment also usually involves efforts to change behavioural patterns. These strategies might include:

  • Facing one’s fears instead of avoiding them.
  • Using role-playing to prepare for potentially problematic interactions with others.
  • Learning to calm one’s mind and relax one’s body.

Rational for CBT and autism

CBT has direct applicability to autistic children, adolescents and adults who are recognised as having delayed abilities in understanding, expressing, and managing emotions (Attwood 2007), and who, due to impaired Theory of Mind abilities, can make false assumptions as to the intentions and emotions of others (Baron-Cohen 2001). The therapeutic approach of CBT is to encourage the autistic person to be more consciously aware of their internal emotional state, their thinking and behavioural patterns and their bodily sensations or interoception. Recent research has confirmed that autism is associated with impaired interoception abilities (Suzman et al 2021).

CBT includes learning about and improving one’s ability to respond effectively to life situations, including social situations, transitions, highly stressful learning environments etc.  These life circumstances and others commonly cause anxiety and stress for autistic adults, leading to problems coping with strong emotions such as fear, worry, anger and depression. CBT includes improving self-reflection and reflecting on the thoughts and feelings of self and others. Both of these skills are necessary for emotion management but particularly difficult for autistic individuals who, due to their different neurology, tend to have a limited repertoire of responses to emotional arousal (Attwood 2007). Within CBT there is an opportunity to learn new skills to relax the autonomic nervous system and cope with social situations and other stressful life circumstances. Thus, CBT provides an opportunity to learn self-awareness and new strategies to manage, and in some cases overcome, mental health conditions.

Confirmation of the efficacy of CBT with autistic clients

Several studies have reviewed CBT as a treatment for autistic children (Perihan et al 2020; Selles et al 2015; Vasa et al 2014) and adults (Spain et al 2015) and found that over 70% of study participants responded positively to treatment, consistent with the expected response for the non-autistic population. A meta-analysis of 48 studies of CBT with autistic participants confirmed that CBT is effective using informant and clinician report measures (Weston, Hodgekins and Langdon 2016).

Our clinical experience has suggested that the effectiveness of CBT can be improved by recognising that a client may take some time to understand the concept of cognitive restructuring with more practice sessions required. There will probably be a need to increase the number of sessions from the conventional ten-session therapy to at least 20 sessions (Spain et al 2015).  The efficacy of CBT will be enhanced by encouraging belief in the client’s ability to regulate their emotions (Sharma et al 2014) and more experiential activities and increasing compliance with homework tasks.

CBT has been successfully applied to treat adult autistic clients who are anxious (Ung et al 2015) depressed (Attwood and Garnett 2016) and autistic children who have experienced trauma (Stack and Lucyshyn 2019).

New developments in CBT

CBT is constantly evolving and adapting to research and clinical experience and discovering new applications. The new developments include Mindfulness-Based Cognitive Therapy (MBCT) as well as Acceptance and Commitment Therapy (ACT) Dialectical Behaviour Therapy (DBT) and Cognitive Remediation Therapy (CRT). CRT has been suggested as a modality to increase cognitive flexibility (Stark et al 2021) in autistic clients. Modern technology is being used in incorporating CBT principles in popular computer games such as Minecraft in the new interactive CBT game Legend Land (2022).

A note on autistic burnout

We are increasingly recognising the potential for autistic burnout when demands exceed coping abilities or burnout as a response to stressful life events and long-term camouflaging (Higgins et al 2021; Mantzalas et al 2021).  Recovery is protracted and may last months or years.  Burnout affects mental health, energy levels and cognitive abilities. According to Higgins et al (2021), the degree of cognitive confusion and overload associated with autistic burnout could limit the effectiveness of conventional CBT. For example, many clinicians may treat depression using the traditional CBT methods of behavioural activation and increasing social contact. Both these methods are likely to increase burnout leading to a worsening of symptoms. Utilising cognitive restructuring may increase rumination and “analysis paralysis.” 

We are finding that modifying CBT to include skills training for the school and workplace to provide modifications including decreasing responsibilities and creating a more autism-friendly culture is more helpful than conventional CBT strategies. This may include consideration of part-time employment, and a review of career options and strategies to reduce stress and increase energy such as Energy Accounting (Attwood & Garnett 2016). There will also need to be consideration of attitude changes by educating work colleagues and line managers about the daily challenges faced by an autistic employee about coping with changes in work schedules and expectations, sensory experiences and social engagement (Garnett & Attwood 2022). Other recommended strategies for autistic burnout include connecting with others who have shared the same experiences and arranging more time to engage in their special interest.

Our clinical experience has indicated that emotion regulation and a positive sense of self have been achieved by greater self-compassion and self-acceptance, such as the comment “I can look back now and cut myself a bit of slack” CBT can include activities to celebrate the qualities associated with autism with a positive outlook encouraging greater resilience in coping with situations associated with distress and agitation.

Barriers to the acceptability and effectiveness of CBT for autistic adults

A recent study by Spain et al (2022) examined the perspectives of 50 CBT practitioners regarding potential barriers to CBT for autistic adults. Analysis of the data indicated six main factors, which are ranked from the most to least frequently reported barriers in the following list.

  1. Factors related to service providers such as long waiting times, lack of resources and autistic adults potentially being deemed ineligible or too complex for the service provider.
  2. Practitioner-related factors such as a lack of understanding and training in autism, diagnostic overshadowing, lack of knowledge of how to adapt CBT for autistic adults and appropriate metrics to measure change.
  3. Client-related factors such as multimorbidity, difficulties articulating thoughts and feelings, theory of mind impairments, sensory sensitivities, cognitive rigidity, difficulties tolerating change, generalising skills and adverse past experiences of therapy and services.
  4. CBT-related factors such as whether standard treatment protocols apply to autistic adults, and difficulties developing a therapeutic alliance.
  5. Factors relating to national guidelines such as the National Institute for Health and Care Excellence (NICE) in the United Kingdom.
  6. Considerations of the degree and nature of family support and engagement and poor links between service providers.

The study also made recommendations to enhance CBT services including increased practitioner knowledge of autism and having time to read relevant research and publications. Training is needed to include information on the core characteristics of autism and adapting standard treatment protocols for autistic clients and suggestions to enhance therapeutic communication and engagement.

Adaptations to CBT to accommodate the characteristics of autism

Learning profile

Throughout a CBT program, the autistic client will be required to learn about emotions within themselves and others and acquire new skills to regulate and express emotions, and manage challenging life circumstances. The distinctive learning profile associated with autism will need to be recognized by the clinician, through all aspects of the therapy including affective education, cognitive restructuring, learning new skills and the exposure therapy components of CBT.

Autism is associated with a different and distinctive way of perceiving, thinking, and learning and many autistic individuals function at the extremes of cognitive ability (Attwood 2007). Despite having a Full-Scale IQ in the normal range, they usually have a very uneven cognitive profile on an IQ test. For the clinician designing a CBT program, information from an IQ assessment can be invaluable in determining learning strengths and weaknesses. For example, if the autistic client has relatively advanced verbal reasoning skills, then understanding of the concepts and strategies used in CBT may be improved by the inclusion of relevant literature in the program. When reading a text, there are no interpersonal or conversational skills required, and the autistic client can give full cognitive attention to the text. If the autistic client has relatively advanced visual reasoning abilities, learning may be facilitated by computer programs, demonstration, role play, metaphor and visual imagery with less emphasis on conversation. The phrase ‘a picture is worth a thousand words’ is particularly relevant.

Attention and executive functioning

Psychologists divide attention into four components: the ability to sustain attention, to pay attention to relevant information, to shift attention when needed, and to encode attention – that is, to remember what was attended to. Autism is associated with problems with all four aspects of attention. These characteristics need to be recognised and accommodated during therapy, for example, more frequent breaks between and within activities, highlighting important text and ensuring full attention when explaining an important aspect of therapy.  Some therapy activities require the ability to shift attention during the activity and focus on new information. Unfortunately, autistic clients can have difficulty ‘changing track’ while engaged in a ‘train of thought’. There will need to be accommodation of a potential delay in processing time and cognitive closure before engaging in a new activity.

 Autistic clients often have problems with executive function, especially focussing on details rather than the ‘big picture’, conceptualizing and considering the potential outcomes of various decisions, and being able to plan and prioritize. There can also be difficulties modifying decisions based on results, that is flexible thinking. A metaphor for inflexible thinking is that of a train on a singular track, representing a ‘one track mind’. Unfortunately, our clinical experience has indicated that autistic clients tend to continue using incorrect strategies, not learning from mistakes – that is, failing to ‘switch tracks’ to get to the destination (i.e., finding a solution). This cognitive rigidity tends to become greater with increased anxiety. The inability to conceptualize an alternative response influences the progress of a CBT program. It is therefore important that the clinician encourages flexible thinking, asking, ‘What else could you do?’ and providing multiple choice options rather than anticipating the generation of spontaneous alternatives. Strategies to improve relaxation can also be used to facilitate flexible thinking within the CBT session and in real-life practice situations.

Another sign of impaired executive function is difficulty inhibiting a response (i.e., being impulsive) and using new strategies. The autistic client can be notorious for being impulsive in social situations, appearing to respond without thinking of the context, consequences, and previous experience. They can gradually become capable of thoughtful deliberation before responding, but under conditions of stress, or if feeling overwhelmed or confused, can be impulsive. It is important to encourage the client to relax and consider other options before responding and to recognize that being impulsive can be a sign of confusion and stress.

If the impaired executive function is formally confirmed, then the effectiveness of CBT could be enhanced by consideration of appropriate medication and implementing strategies designed to improve attention, memory, organization abilities and cognitive flexibility for autistic individuals (Moraine 2015). Another

strategy to reduce the problems associated with impaired executive functioning is to have someone act as an ‘executive secretary’. A family member may have already become an executive secretary, providing guidance with organizing and planning, promoting, and encouraging flexible thinking, especially with regard to completing the homework assignments of CBT and applying the new strategies in real-life situations. It is important during therapy to have regular communication with the client’s support network.

Fear of making a mistake

A learning characteristic of autism is a tendency to have a fear of making a mistake (Attwood 2007). When unsure what to do or say, the situation becomes a trigger for a flight, fight or freeze response. Research on the cognitive abilities of autistic children and adults has identified a conspicuous tendency to notice detail and errors more than typical individuals (Frith and Happe 1994). When combined with a fear of appearing stupid and having been ridiculed by peers at school or work, this can have a significant effect on the ability to learn. There can be a refusal to attempt a new activity that could fail, with the attitude of, ‘If you don’t try, you don’t make a mistake’.

It is important that the clinician encourages any suggestion without criticism and adopts a positive approach, implying that making a mistake is not a tragedy or a sign of intellectual disability. Making a mistake provides useful information to discover the elusive solution.  In other words, ‘we learn more from our mistakes than our successes’. Autistic clients can be very sensitive to any indication of being stupid. A valuable motivation in a learning situation can be to appeal to intellectual abilities with a comment such as, ‘that suggestion demonstrates your amazing intellectual ability and creativity which can be a more powerful motivator than pleasing others such as, ‘I am so delighted with that suggestion’.

Language profile

Autistic clients often have difficulties with the pragmatic aspects of language. Pragmatics refers to the use of language in social contexts and how people produce and comprehend meanings through language. Problems with pragmatics can occur in multiple areas of communication, such as talking in a monologue, lack of coherence (e.g., difficulty describing a sequence of events or providing a clear account of an event from a listener’s perspective), over-precise and technical information and turning the conversation to a favourite theme. The clinician may need to address and accommodate these characteristics, providing guidance in the ‘art of conversation’.

Autistic clients often make a literal interpretation of a comment, and this would affect the clinician’s use of idioms, figures of speech and sarcasm. It is important that the clinician provides very concrete examples of constructs and double-check that the autistic client has understood the information correctly. However, we have found that metaphors can be used as this provides a visualization of the theme or construct.

A central characteristic of autism is difficulty developing rapport and conversational reciprocity. An autistic client may not engage in social chit-chat or the give and take of conversation, making it harder for the clinician to sustain the interaction. Shorter sessions or encouragement of conversational skills may be helpful.  The clinician also needs to appreciate how direct or ‘blunt’ and honest the autistic client can be, due to difficulties with Theory of Mind and understanding the social conventions of conversation. It is important not to be offended by being frequently corrected or criticized.

The clinician will also need to be aware of their client’s preference to be addressed as an autistic person or a person with autism. There is the potential to offend by not using the client’s preferred form of address.

Special interests and talents

One of the central diagnostic characteristics of autism is the development of special interests. This can include information on topics such as the life cycle of a butterfly or an encyclopaedic knowledge of presidents of the USA or television programs such as Star Trek or Dr Who. The special interest has many functions, including feelings of enjoyment or euphoria in acquiring new items or knowledge on a specific theme and the intense mental focus acting as a thought blocker for feelings of anxiety, sadness, or anger. The interest can be constructively incorporated into a CBT program, for example, as an antidote to feeling sad, a thought blocker for anxiety and the ‘off switch’ for an emotional meltdown. A special interest in a character such as Harry Potter or Dr Who can be used to illustrate how a perceived hero copes with adversity, becoming a model of how they can cope with feelings such as anxiety and anger.

The interest can also be used to improve conceptualization. For example, if the special interest is weather systems, then emotions could be expressed as a weather report. The special interest can also be used in the affective education component of CBT. A project or field study for an autistic client whose special interest in aviation can be to visit an airport to observe the emotions of passengers saying farewell, greeting friends and relatives, and waiting for a boarding pass.

Consistency, certainty, and change

A characteristic of autism is a powerful desire to seek consistency and certainty in daily life, being able to relax when there is a clear routine or schedule of activities. Autism is also associated with having an intolerance of uncertainty (Maisel et al 2016; Stark et al 2021). There is also a positive correlation between intolerance of uncertainty, anxiety, repetitive behaviours, and sensory sensitivities (Hwang et al 2020).

The clinician must create a schedule of activities for the session, with clear information on the objectives and the probable duration of each activity. We now have CBT programs specifically for autistic clients who have an intolerance of uncertainty in their daily lives (Keefer and Vasa 2021; Rodgers et al 2017).

The DSM-5-TR diagnostic criteria for autism include in section B, insistence on sameness and extreme distress at small changes and rigid thinking patterns. CBT is based on the premise that the client can change their perceptions, thoughts, and reactions. However, there may be some resistance from an autistic client that change is warranted and feasible. They may require some convincing and positive feedback on the value of cognitive change.

Thinking styles

CBT addresses maladaptive and adaptive thinking styles that can affect emotion perception and regulation. We have recognised a tendency for autistic clients to catastrophize, potentially leading to an emotional meltdown and to personalize, that is blame themselves rather than consider how other people may have contributed to the situation. There is also a tendency to avoid emotional situations rather than cope with the situation and to suppress emotions by using a thought blocker such as playing computer games. CBT will need to encourage adaptive thinking styles such as self-soothing and motivating inner speech such as ‘I can cope with this’ and considering alternative perspectives and responses (Albein-Urios et al 2021). There can be a pessimistic thinking style which will affect cognitive restructuring and the clinician can encourage reality testing to reduce the propensity for a negative perception of outcomes. There can also be a concern with the disclosure of thoughts and feelings which can be affected by difficulties with alexithymia and interoception.

Alexithymia and interoception

Alexithymia is a difficulty recognising and accurately labelling different emotions and body sensations. A person with alexithymia can tell if they are feeling a “good” emotion or a “bad” emotion but could not necessarily tell you what they are feeling more accurately. A recent meta-analysis of studies on alexithymia and autism (Kinnaird, Stewart & Tchanturia, 2019) found that overall, the prevalence of alexithymia was much higher in autism at 50% than the 5% in the general population.

The affective education component of CBT can improve the vocabulary of an autistic client to describe their emotions, thereby diminishing the effects of alexithymia. One approach is to quantify the degree of expression such that if the precise word to describe a feeling is elusive, the client can calibrate and express their degree of emotion using a thermometer or numerical rating, thus indicating the intensity of the emotional experience.

Although the autistic client may have acquired, through the affective education component of CBT, a reasonable and precise vocabulary to describe a particular depth of emotion, there can still be considerable difficulty answering the questions, ‘What were you thinking and feeling?’ or providing a coherent and cogent answer to the question, ‘Why did you do that?’ However, there can be greater communication of inner thoughts and feelings using communication systems other than having a face-to-face conversation.

If the explanation is incoherent or elusive, there can often be greater clarity and insight using typing rather than talking. The clinician can request the explanation be included in an email or text message or working together on a computer. There can also be a greater insight into inner thoughts and feelings using music; for example, to choose a track on a CD or create a playlist that, through the music or lyrics, explains their inner thoughts and emotions. Sometimes, creating a drawing, cartoon or collage may help to express the inner workings of the mind of an autistic client. The efficacy of CBT may be enhanced by incorporating aspects of music and art therapy.

Interoception is defined as the cognitive sense of the internal state of the body. Several recent research studies have explored an association between autism and interoception (Suzman et al 2021; Trevisan, Parker and McPartland 2021). These studies have confirmed difficulty making sense of body signals unless they are very strong and limited cognitive awareness of heart rate, breathing and muscle tension. These are physiological indicators of increasing levels of anxiety or anger. As one of the autistic participants in the Trevisan et al study said: The best way I can describe this to health professionals is that I receive a signal from somewhere I’m not exactly sure, and I have difficulties interpreting what they might mean. There can also be a misinterpretation of internal signals as described by another research participant in the same study: When I’m really sad, it physically hurts. The best way I can describe it as it’s like my whole-body stings very very badly or is on fire.

In our clinical experience, we recall an autistic client who said I only know what I am feeling by seeing what I am doing. CBT for autistic clients will need to include a detailed assessment of behavioural, verbal and thinking indicators of increasing emotional intensity. Biofeedback technology can also be used such as smart and sports watches which indicate increasing heart.

CBT can be very effective when regulating relatively low levels of emotions and thereby prevent the emotions from escalating to an intensity that is difficult to regulate cognitively. Unfortunately, with impaired interoception abilities, an autistic client is often not cognitively aware of low levels of emotional intensity to consider using CBT strategies. The client, and those who support them, may only be aware of rapidly escalating emotions just a few seconds before they reach a critical level of intensity. A level when cognitive restructuring may not have sufficient ‘power’ to regulate the intensity of the emotion. At this point, the issue is not necessarily emotion management but energy management and the development of a plan to effectively discharge the energy constructively using a range of physical activities such as going for a run or slowly achieving emotional stability in solitude.

CBT for autistic clients will benefit from including strategies to improve mind-body connection such as Mindfulness-based cognitive therapy (MBCT) meditation and yoga (Tanksale et al 2021) and specific activities to improve interoception (Mahler 2019).

The sensory profile associated with autism

We have explained the difficulties an autistic client may have with interoception, that is being less sensitive to internal sensory information. We have found that autistic clients can have an extraordinary sensory perception for exteroception, that is perceiving sensory information from the external world. Specific sounds, types of lighting, tactile experiences, and aromas can be perceived at an extreme level of sensitivity that can be extremely painful. The frequency of these experiences in daily life can lead to hypervigilance and heightened levels of anxiety.

The assessment and evaluation of the nature and degree of problems associated with a specific emotion must include aspects of sensory sensitivity. Our clinical experience indicates that for many autistic clients, repeated exposure to the painful sensory experience does not lead to habituation. Any graduated exposure programme needs to accommodate the autistic person’s sensory profile, otherwise, there is a significant risk of increasing the person’s anxiety and facilitating a out dropout from therapy.

There is considerable research on the sensory profile associated with autism for children and recently for adults (Tavassoli et al 2014). It is important that the clinician is familiar with the latest conceptualization of sensory sensitivity (Bogdashina 2016) and consults an Occupational Therapist who specialises in autism and sensory sensitivity.

A component of exteroception that we have identified from our clinical experience and reading autobiographies is that for an autistic client the emotional states of others can be perceived by an almost ‘sixth sense’ and the emotional states of others may ‘infect’ an autistic client, as illustrated in the following quotations: There’s a kind of instant subconscious reaction to the emotional states of other people that I have understood better in myself over the years and If someone approaches me for a conversation and they are full of worry, fear or anger, I find myself suddenly in the same state of emotion. Another relevant quotation is I am able to distinguish very subtle cues that others would not see, or it might be a feeling I pick up from them

This may lead to the avoidance of some social situations and individuals due to being sensitive to ‘negative vibes’. Should this issue be identified in the assessment stage of CBT, the clinician needs to consider how another person’s emotional state can be contagious and to develop ‘protection mechanisms’ such as the metaphor of an umbrella in a storm or a shield.

Another aspect of sensory sensitivity is that the clinician needs to arrange the therapy environment in such a way as to be tolerated by the client and to promote their comfort and relaxation. For example, the lighting may need to be dimmed or changed to non-fluorescent. Smells, such as perfumes or deodorants, may need to be minimized. Therapists may need to ask their client about tactile sensitivity before engaging in any physical gestures, such as handshakes or tapping their arm to gain attention. Calming music could be played for clients that are over-sensitive to auditory experiences such as being able to hear conversations in another room or the noise of the refrigerator in the kitchen of the clinic rooms. In contrast, autistic clients may be under-responsive to some sensations (e.g., pain), and the clinician may need to find ways to identify if the client is experiencing sensations of discomfort that need to be addressed.

In summary

Our extensive clinical experience as CBT practitioners and many research studies have confirmed the value of CBT in reducing autistic adults’ anxiety and depression and improving their quality of life.  We would like to end this blog with a quotation from one of our clients who completed our Exploring Depression CBT program (Attwood and Garnett 2016).  A year after completing the CBT programme, we asked her whether she had experienced a return to depression. She replied “I’ve had quite a number of challenges that could have become depression, but I now have different coping mechanisms that have helped. I’ve had lowered mood at times, but I am getting better at bringing in the coping mechanisms and they have only lasted a couple of days not a couple of months.

Recommended resources

Gaus, V. (2019) Cognitive-Behavioral Therapy for Adults with Autism Spectrum Disorder, second edition The Guilford Press.

Scarpa, Williams White and Attwood (2013) CBT for Children and Adolescents with High-Functioning Autism Spectrum Disorders The Guilford Press

References

Albein-Urios et al (2021) Journal of Autism and Developmental Disorders 51, 3322-3330

Attwood, T. (2007) The Complete Guide to Asperger’s Syndrome London, Jessica Kingsley    Publishers

Attwood and Garnett (2016) Exploring Depression and Beating the Blues: A CBT Self-Help Guide to Understanding and Coping with Depression in Asperger’s Syndrome [ASD-Level 1] Jessica Kingsley Publishers

APA (2022). Clinical Practice Guideline for the Treatment of Posttraumatic Stress Disorder (PTSD) in Adults; https://www.apa.org/ptsd-guideline

Baron-Cohen S. (2001) Theory of Mind and autism: A review. In. L.M. Glidden (Ed.) International review of research in mental retardation: Autism (pp.169-184). San Diego, CA: Academic.

Bogdashina O. (2016) Sensory Perceptual Issues in Autism and Asperger Syndrome: Second Edition Jessica Kingsley Publishers

Frith, U. and Happe, F. (1994) ‘Autism: Beyond Theory of Mind.’ Cognition 50, 115-132

Garnett and Attwood (2022) Autism Working: A seven-stage plan for thriving at work Jessica Kingsley Publishers

Higgins et al (2021) Autism 25, 2356-2369

Hossain et al (2020) Psychiatry Research 287, 112922

Hwang et al (2020) Autism 24 411-422

Keefer and Vasa (2021) Journal of Neurodevelopmental Disorders 13:46

Kinnaird ,Stewart, and Tchanturia.(2019). Investigating alexithymia in autism: A systematic review and meta-analysis; European Psychiatry, 55: 80–89.

Lai et al (2019) The Lancet Psychiatry 6 (10), 819-829

Lever, A.G., Geurts, H.M. Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder. J Autism Dev Disord 46, 1916–1930 (2016).

Legend Land (2022), www.fullpotentialpsychology.com.au

Mahler, K. (2019) The Interoception Curriculum

Maisel et al (2016) Jr. Abnormal Psychology 125, 692-703

Mantzalas et al (2021) Autism in Adulthood

Moraine, P. (2015) Autism and Everyday Executive Function. Jessica Kingsley Publishers

Perihan et al (2020) Journal of Autism and Developmental Disorders 58, 1958-1972

Rodgers et al (2017) Journal of Autism and Developmental Disorders Vol. 47(12), pp 3959-3966

Selles et al (2015) Child Psychiatry and Human Development 46, 533-547

Sharma et al (2014) Autism 18, 244-254

Spain et al (2015) Research in ASD 9

Spain et al (2022) Journal of Rational-Emotive & Cognitive-Behavior Therapy Published online

Stack and Lucyshyn (2019) Journal of Autism and Developmental Disorders 49 1613-1625

Stark et al (2021) Trends in Cognitive Sciences

Suzman et al (2021) Molecular Autism 12:42

Tanksale et al (2021) Autism 25, 995-1008

Trevisan, Parker and McPartland (2021) Journal of Autism and Developmental 51, 3483-3491

Ung et al (2015) Child Psychiatry and Human Development 46, 533-547

Vasa et al (2014) Journal of Autism and Developmental Disorders 44

Weston, Hodgekins and Langdon (2016) Clinical Psychology Review 49, 41-54

Nonspeaking autism and body language

Nonspeaking autism and body language

Autistic children and adults who do not develop speech can express their thoughts and feelings by body language. There can be conventional body language but also the development of unusual or autistic mannerisms whose communicative intent is interpreted by a parent or teacher. These ‘signature’ mannerisms can express emotions such as happiness by literally jumping with joy and a happy ‘dance’, anxiety by rocking and pacing and agitation by biting their hand or arm. The mannerisms have a message that can include:

I’m happy

I don’t know what to do

Leave me alone

Please help me

I feel anxious and stressed

We recommend that parents and teachers record on their mobile or cell phone the mannerisms that express different dimensions and levels of emotion and specific thoughts. These could be the body language that express different levels of happiness such as finger movements that resemble playing a piano at a low level of happiness to jumping up and down with intense excitement. It will be important to record the mannerisms that indicate increasing levels of agitation that precede a meltdown. The strategy is to create a ‘foreign phrase’ dictionary of mannerisms that ‘translates’ the action so that parents and teachers can respond appropriately.

Some autistic mannerisms have been conceptualised as examples of ‘stimming’ and that they must be inhibited. However, the mannerisms often have a constructive purpose to reduce stress and nervous energy. A speaking autistic person described how his mannerisms can “release the pressure that’s built up inside me, as though a weight has been lifted from my chest” Intervention can encourage a range of appropriate alternative stress reduction actions.

There are mannerisms that are mesmerising and created to reduce sensory sensitivity. Temple Grandin described how:

“Intensely preoccupied with the movement of the spinning coin or lid, I saw nothing or heard nothing. People around me were transparent and no sound intruded on my fixation. It was as if I was deaf. Even a sudden loud noise didn’t startle me from my world. But when I was in the world of people, I was extremely sensitive to noise” Grandin and Scariano 1986.

We recognise that there can be a mind-body division associated with autism and some mannerisms can be a way of achieving a mind-body connection. Some mannerisms serve the function of ‘starting the engine’ or ‘changing gear’, a behavioural prosthesis for a movement disorder. An autistic child may also engage in spinning and twirling as a form of choreography or ‘dance’ that is an enjoyment of freedom of movement and being able to control your body.

In summary, the mannerism have both a message and a purpose and it is important that we ‘read’ the autistic child or adults body language to enhance their ability to communicate their thoughts, feelings and experiences.

References

Grandin, T. and Scariano, M. (1986). Emergence: Labelled Autistic. Novato, California: Arena Press.

The movement profile associated with autism​

The movement profile associated with autism

As much as autistic children have a different way of learning, they can also have a different way of moving. When walking or running, the child’s coordination can be immature with a gait that lacks fluency and efficiency. On careful observation, there can be a lack of synchrony in the movement of the arms and legs, especially when the person is running. Parents often report that their autistic child needed considerable guidance in learning activities that required manual dexterity such as tying shoelaces, dressing, and using eating utensils. Teachers may notice problems with fine motor skills, such as the ability to write and use scissors. Activities that require coordination and balance can also be affected, such as learning to ride a bicycle, skate or use a scooter. The overall appearance can be of someone who is clumsy.

The movement difficulties associated with autism have been explored by recent research studies with one in three autistic children having significant movement difficulties (Licari et al 2020). A study of 9–12-year-old autistic children found that their performance on motor tasks was at a similar level to children half their age, with difficulty coordinating movements that involve both sides of the body or both arms and legs, as though each body segment acted independently (Staples and Reid 2010). Gait can be affected in terms of a stiffer gate, unusual fluidity of walking, trunk and postural abnormalities and marked loss of smoothness (Nobile et al 2011) There can be an association with bradykinetic motor behaviour (slowness of movement), rigid motor behaviour and hypokinetic behaviour (Mostert-Kerckhoffs et al 2020). A recent systematic review of research on the movement profile associated with autism confirmed an impairment in Fundamental Movement Skills, especially balance, object control and locomotor skills that emerge early in life and persist to the adult years (Gandotra et al 2020)

The movement and coordination problems can be obvious to the physical education teacher and other children during PE classes and sports, and in playground games that require ball skills. An autistic child can be immature in the development of the ability to catch, throw and kick a ball. When catching a ball with two hands, the arm movements are often poorly coordinated and affected by problems with timing, i.e., the hands close in the correct position, but a fraction of a second too late. The child has taken too long to think and plan what to do.

One of the consequences of not being successful or popular at ball games is the exclusion of the child from some of the social games in the playground. Such children may choose to actively avoid these activities, knowing they are not as able as their peers. However, when they bravely attempt to join in the activity, they can be deliberately excluded by other children due to being perceived as a liability, not an asset, to the team. Thus, autistic children are less able to improve ball skills by practising with their peers.

From an early age, parents need to provide tuition and practice in ball skills, not in order that their child becomes an exceptional sportsperson, but to ensure that he or she has the basic competence to be included in the popular ball games of peers. However, it is interesting that some autistic children have a greater coordination and fluency of movement when swimming, develop remarkable agility when using the trampoline, acquire coordination through practice in solitary sports that can become a special interest, such as golf, and enjoy recreational activities such as horse riding, rowing and cycling. This can be to a level in advance of peers.

The mental planning and coordination of movement

A person is described as having apraxia when there are problems with the conceptualization and planning of movement, so that the action is less proficient and coordinated than one would expect. Autistic children have problems with the mental preparation and planning of movement with relatively intact motor pathways. Poorly planned movement and a slow mental preparation time may be a more precise description than simply being clumsy.

Ben describes the experience of having a delay or feeling of disengagement between thought and action:

I have always felt a disconnection between my body and my brain. Sometimes it’s as if I don’t have a body. My body has failed me. I fall down when I try to turn. I have problems seeing. I can’t focus. I can’t make my hands move the way I want them to. (La Salle 2003 p.47)

There may also be problems with proprioception, that is the integration of information about the position and movement of the body in space and the ability to maintain posture and balance. These are skills that are often used in the climbing and adventure games of children. There can be a tendency to fall off climbing apparatus and a risk of falling and injury when climbing a tree.

When examining general movement abilities of autistic children, there can be signs of ataxia; that is, less orderly muscular coordination and an abnormal pattern of movement. This can include movements being performed with abnormal force, rhythm and accuracy, and an unsteady gait. Observations of walking and running, climbing stairs, jumping, and touching a target (the finger to nose test) of autistic children indicate signs of ataxia.

One of the movement disturbances associated with autism is lax joints, such as Ehlers-Danlos syndromes. We do not know if this is a structural abnormality or due to low muscle tone, but the autobiography of David Miedzianik describes how:

At infant school I can seem to remember playing a lot of games and them learning us to write. They used to tell me off a lot for holding my pen wrong at infant and primary school.  I still don’t hold my pen very good to this day, so my handwriting has never been good. I think a lot of the reason why I hold my pen badly is that the joints of my fingertips are double jointed, and I can bend my fingers right back. (Miedzianik 1986, p.4)

Should problems occur from lax joints or immature or unusual grasp, then the child may be referred to an occupational therapist or physiotherapist for assessment and remedial activities. This should be a priority with a young child, since so much schoolwork requires the use of a pencil or pen.

Handwriting

Teachers and parents can become quite concerned about difficulties an autistic child may have with handwriting. The individual letters can be poorly formed and larger than would be expected for a child of that age. The technical term is macrographia. The child can take too long to complete each letter, causing delay in completing written tasks. While the rest of the class have written several sentences, the autistic child is still deliberating over the first sentence, trying to write legibly, and becoming increasingly frustrated or embarrassed about his or her inability to write neatly and consistently.

Sometimes the word, written in pencil, has been frequently rubbed out as the child considers the letters are not perfect, an exact copy of the printed text in the book. An activity in class may be refused because of an aversion to the requirement to write, not necessarily an aversion to the topic. Teachers may become frustrated by the illegibility of the handwriting but need to remember that this is an expression of a movement disorder, not necessarily a lack of commitment to the work.

Some autistic children can become fascinated by handwriting and develop a special interest in calligraphy. The problem here is that the child takes too long to complete a written assignment in class. Each letter may be perfect, but the child has become more absorbed in the formation of the letters than the content of the sentence.

When an autistic child has a problem with handwriting, there are several options. Remedial exercises to improve motor coordination – basically, lots of practice – can improve the fine motor skills needed to write legibly, but such activities can be extremely boring and resisted. An occupational therapist can suggest modifications to improve handwriting skills, such as a slightly slanted writing surface and a pen that is easier to grasp. A scribe can be used in class to write for the child. However, we suggest to teachers and parents that handwriting is becoming an obsolete skill in the twenty first century: modern technology can come to the rescue in terms of typing, not handwriting.

The young autistic child should be encouraged to learn to type and use a keyboard, computer and printer in the classroom. While basic writing skills are still needed, as the current generation of children become adults, they will be able to talk to a word processing device which will record and print speech. Few people today write someone a handwritten letter; communication is predominantly by typed e-mail. High school and university exams can be completed by typing answers to questions, which is a more efficient means of expressing knowledge and more easily read by examiners. Thus, teachers and parents should not be overly concerned about poor handwriting skills; rather, ensure that the child learns to type. When this option is not available, some children may need to be allowed extra time to complete tasks and exams.

Excellence in movement abilities

While we know that autism can be associated with impaired movement abilities, we have known many autistic children who have achieved abilities in movement skills that have been exceptional and contributed towards winning national and international championships. The movement disturbance does not appear to affect some sporting activities such as surfing, using the trampoline, playing golf and horse riding. These are activities that can be practised in solitude. Because of relative success in these activities, the autistic child can develop a special interest in the activity and with extensive practice and single-minded determination, achieve a level of proficiency that reaches a very high standard.

There can be ability with endurance sports such as marathon running. Once the running movement has become efficient, the autistic adolescent or adult can be remarkably tolerant of discomfort and able to just keep running. Some sports such as fencing can be enjoyed as the participants wear a mask (no problems with eye contact with the opponent) and there are set movements and responses to learn. Martial arts can also be appealing, especially if there is a slow-motion approach to initially learning defensive and offensive actions. The history and culture of martial arts can also be an intellectual interest for the autistic child. The indoor game of snooker is not a sport associated with motor agility, but autistic adolescents can have a natural understanding of the geometry of the moving balls and the pockets on a snooker table.

In summary, autism is associated with a range of movement disorders that will affect the expression of academic abilities in the classroom and social play in the playground. However, some autistic children have the potential to participate and enjoy a variety of solitary sports.

References

 Gandotra et al (2020) Research in ASD 78, 101632

 LaSalle, B. (2003) Finding Ben: A mother’s journey through the maze of Asperger’s. New York: Contemporary Books.

Licari et al (2020) Autism Research 13, 298-306

Miedzianik, D. (1986) My Autobiography. Child Development Research Unit, University of Nottingham, Nottingham, United Kingdom.

Mostert-Kerckhoffs et al (2020) Journal of Autism and Developmental Disorders 50, 415-428

Nobile et al (2011) Autism 15, 263-283

Staples and Reid (2010) Journal of Autism and Developmental Disorders 40, 209-217

Why do autistic adults become depressed? Part 1

Why do autistic adults become depressed? Part 1

Autistic adults appear especially vulnerable to feeling depressed, with about one in three adolescents and two out of three autistic adults having experienced at least one episode of severe depression in their life. More adults than adolescents may experience clinical depression because the reasons for depression in autistic adults may intensify during the adult years. The following descriptions about why autistic adults can become depressed are also relevant for adolescents. This is the first in a two-part series on why autistic adolescents and adults become depressed.

The reasons autistic adults become depressed

Feelings of social isolation and loneliness

Autistic adults have the desire for friendship, connection, and social approval, but often struggle to easily achieve these outcomes. The reasons for this are twofold. Firstly, autistic people are not easily read or understood by neurotypicals (nonautistic people) which can cause a sense of disconnection and wish to avoid interaction for both parties. Secondly, because the neurology of an autistic person is not wired innately to assist them to easily understand people and how to navigate social interactions. This double bind has been called the “double-empathy problem” of autism (c.f. Mitchell, Sheppard & Cassidy, 2021). The result can be extreme feelings of social isolation and loneliness: as described by Debbie, an autistic woman, ‘the heartache of having unmet needs.’ The compensatory strategy of analysing social situations and social performance can be exhausting and significantly contribute to feeling depressed.

The long-term consequences on self-esteem of feeling rejected and not respected or valued by peers

Autistic adults may see other people as being ‘toxic’ to his or her mental health because of past experiences of bullying and rejection. These experiences have been described as giving intense physical and emotional pain. It is little wonder that many autistic adults choose solitude rather than company. However, as one of our clients with autism said, ‘I would rather be alone, but I cannot stand the loneliness.’ Most autistic adults have experienced bullying, rejection and humiliation, and without a well-defined and robust self-identity, cannot mentally counter what the bully says or cope with the social rejection and humiliation.

Many typical teenagers value specific qualities in their peers, such as the ability to make people laugh through quick wit, risk taking, being socially skilled, sporting ability and being perceived as ‘cool’. Being popular is equated to self-worth. The qualities that an autistic adult bring to a friendship usually include loyalty, compassion, knowledge and open-mindedness, which may not be valued by typical teenagers. It is easy for the autistic adult to believe that their friendship qualities are inferior to their peers, and that perhaps, therefore, they are not as valuable as other people. This may result in feelings of low self-esteem which contributes to feeling depressed.

The mental exhaustion from trying to succeed socially

Despite the lack of the innate hardwiring for easily socializing, many autistic adults utilize their intellect to achieve social inclusion. Unfortunately, the psychological cost is high. The mental effort of intellectually analyzing every interaction to know what to do and say is exhausting. As a Buddhist monk with Autistic adults said, ‘For every hour I spend socializing, I need an hour of solitude to recharge my energy levels.’ Energy depletion is a major cause of depression.

Internalizing and believing the peer criticisms and torments

Frequent bullying and humiliation by peers can lead an autistic adult to believe that they really are defective in the ways described by the predators of the school and workplace. As Faye, an autistic woman and public speaker said, ‘If you are told each and every day by your peers, your teachers and your family that you are stupid, you learn pretty quickly that you are stupid.’ This can lead to beliefs about the self that are judgmental and critical, such as ‘I must be stupid,’ ‘I am defective,’ ‘There is something undeniably wrong with me,’ which can both make the person depressed, and keep them depressed. In contrast, typical adolescents, when criticized by peers, will have several close friends who can quickly and easily repair their emotions and provide reassurance and evidence that the negative suggestions are not true.

A thinking style that focuses on errors and what could go wrong

Autistic adults are very good at recognizing patterns and spotting errors, which is ideal when designing a bridge or analysing an MRI scan but not so great when thinking about oneself or the future. Being able to focus on errors or anomalies is a very important employment skill; however, when the person always uses this style of thinking when contemplating themselves or their future, depression may be the outcome. An example of this style of thinking is: ‘I never get things right, I am hopeless, and I always will be.’ There can be a relative lack of optimism; as the autistic adult achieves greater intellectual maturity, there may be increased insight into being different, with the resulting self-perception of being irreparably defective and socially stupid.

There can also be high expectations of social competence and an aversion for social errors and self-criticism. As Caroline stated, ‘The worst thing about disappointing yourself is that you never forgive yourself fully,’ or Ruth’s comment that, ‘When something happens, such as not having your homework done, your inner voice blames and shames you for failing.’

Belief that change is aversive and unattainable

Autistic adults often have great difficulty adjusting to change or the unanticipated, and usually actively seek and enjoy and feel relaxed when there is consistency and predictability in their daily lives. This can lead to a mindset that change is unpleasant and to be avoided. Another characteristic of autistic adults is cognitive inflexibility, which is not being able to conceptualize an alternative: in other words, a ‘one track mind’. Thus, as described by Joshua, ‘I may not want to change, know how to change, or believe that change is even possible.’ This can lead to the belief that feeling depressed will continue and be consistent throughout my life.

Not being able to cope with specific sensory experiences

An extremely difficult part of autism for many people can be the way they experience their sensory world, for example smells, sounds, textures and light intensity. Specific sensory experiences that are perceived by others as not particularly intense or aversive can be perceived by autistic adult as being unbearably intense and painful. If the person does not have coping or escape strategies for avoiding or tolerating these intense sensory experiences, he or she may begin to feel very hopeless and depressed about how they are ever going to cope with this aspect of their life. The anxiety they feel while both anticipating and being overwhelmed by aversive sensory experiences can be paralysing, and paradoxically, can increase their sensory sensitivity.

Being diagnosed with autism

Autism has historically been perceived in our society as being a disability, which it can be, or a mental illness, which it is not. However, when we confirm the diagnosis of autism in our diagnostic clinic the most common reaction from an adult who has sought the diagnosis is tears of relief. Finally, there is an explanation for the differences that the person has been observing and analysing for a lifetime. Now the explanation can be that ‘My brain is wired differently’ instead of, ‘I have a defective personality,’

Unfortunately, for some adolescents and young adults there is a rejection of the diagnosis due to genuine concern as to how it might be interpreted by society and especially by peers. There is understandably a sensitivity to the potential for being labelled in a pejorative way, which could then be perceived as official confirmation of being defective. Adolescents can also be acutely aware that peer ignorance of the nature of autism may lead to subsequent rejection. The diagnosis and diagnostic label can become ammunition for verbal and physical abuse.

Family history of depression

We have known for some time that there is a higher-than-expected incidence of mood disorders, including depression, in the family members of an autistic person. Recent research has suggested that 44 per cent of mothers and 28 per cent of fathers of an autistic child have reported having had a clinically diagnosed depression. In more than 50 per cent of cases, the diagnosis occurred before the birth of the child. If a parent has episodic depression, then their son or daughter may have a higher genetic risk of experiencing depression themselves.

A ‘sixth sense’ emotional sensitivity

One of the diagnostic characteristics of autistic adults is a difficulty with nonverbal communication: that is, the ability to read facial expressions, body language and tone of voice. However, clinical experience and autobiographies describe a ‘sixth sense’ ability to perceive and absorb negative emotions in others; the person is over-sensitive to another person’s distress, despair, anxiety or anger, and this can occur without their actually seeing or hearing the other person. An example is a teenager in bed one morning, facing the bedroom wall with eyes closed. His mother tapped the door and silently walked into the room to open the curtains. He immediately said, “What’s wrong Mum?” which was an accurate appraisal of her emotional state of high anxiety, but without engaging conventional nonverbal cues to provide that information.

The following quotes describe the experience:

There’s a kind of instant subconscious reaction to the emotional states of other people that I have understood better in myself over the years. If someone approaches me for a conversation and they are full of worry, fear or anger, I find myself suddenly in the same state of emotion.

I am able to distinguish very subtle cues that others would not see, or it might be a feeling I pick up from them.

This sensitivity to ‘negative vibes’ can feel like being an emotional ‘sponge’. There is a difficulty creating a sense of detachment from the negative feelings of others which seem to be contageous. Another person’s feelings of sadness can become ‘infectious’ to the autistic person, who is not able to determine ownership of the original depressive thoughts. It is interesting that one of the reasons for self-imposed social isolation for an autistic adult can be to provide protection against negative feelings in others that are detrimental to one’s own mental health.

How do I find out more?

We have written a self-help book for depressed autistic adolescents and adults with the intention of saving lives. The above information is taken directly from one of the book chapters. Subsequent chapters outline a 10-Step Programme for recovery from depression. The programme is best undertaken with a Mentor who could be a health professional such as a counsellor or clinical psychologist, or a parent, partner or family friend.

Exploring Depression, and Beating the Blues: A CBT Self-Help Guide to Understanding and Coping with Depression in Asperger’s Syndrome [ASD-Level 1] by Tony Attwood and Michelle Garnett, published by Jessica Kingsley Publishers, Web: www.jkp.com

If you are a Professional who works with adults, we highly recommend attending our upcoming event which may be attended live in Sydney or via webcast:

If you are an autistic adult or supporting an autistic adult, we can highly recommend our one-day course:

References

Mitchell, P., Sheppard, E. & Cassidy, S. (2021). Autism and the double-empathy problem: Implications for development and mental health. British Journal of Developmental Psychology, 39, 1-18. DOI: 10.1111/bjdp.12350

The emotion repair toolbox

The emotion repair toolbox

Autistic children and adults usually have a limited range of emotion repair mechanisms and are less likely to use the more effective strategies used by typical children and adults, such as putting the event in perspective, reappraising the situation, considering alternative responses, acceptance, or being able to disclose feelings to another person, thus seeking, and benefiting from compassion, validation and affection from a family member or friend. However, autistic children and adults can learn new emotion repair strategies, and these can be conceptualised as acquiring more emotion repair tools.

From a very early age, children will know a toolbox contains a variety of different tools to repair a machine or fix a household problem. The strategy is to identify different types of ‘tools’ to fix the problems associated with negative emotions, especially anxiety. The emotion repair for autistic children and adults can be conceptualised as a problem with ‘energy management’, namely, an excessive amount of emotional energy and difficulty controlling and releasing the energy constructively. Autistic individuals appear less able to slowly release emotional energy by relaxation and reflection, and usually prefer to fix or release the feeling by an energetic, potentially destructive action or thought and emotion blocking action.

The range of tools can be divided into those that quickly and constructively release, or slowly reduce, emotional energy, and those that improve thinking or reduce sensory responsiveness, as well as taking out of the toolbox those tools that can make the emotions or consequences worse such as self-harm.

Physical tools

A hammer can represent tools or actions that physically release emotional energy through a constructive and acceptable activity. For young autistic children, this can include bouncing on the trampoline, going on a swing or using playground equipment. Although these facilities may be available at a school, they may not be used by an autistic child due to the number of children using the same equipment, and the autistic child’s need to achieve solitude and avoid social interactions during break times. They may have special dispensation to use such equipment when the other children are in class. At home, it is easier to encourage such physical activities as an emotional repair mechanism.

For older children and adolescents, going for a run, or dancing alone in a bedroom may be used to ‘let off steam’ or release supressed or increasing emotional energy. An autistic adult described how, ‘running keeps anxiety away.’ Other activities may include cycling, swimming or playing the drums, tennis practice or horse riding, and going to a fitness centre.

Unfortunately, autistic children and adults often feel, and indeed may be, clumsy and poorly coordinated, and have often been teased in the past by peers for not being good at team sports and ball games. While research has confirmed that physical exercise decreases repetitive behaviour, aggression, inattentiveness and escape behaviours in autistic children (Lang et al., 2010), there may be limited motivation and low self-confidence with physical activities. A personal trainer may be able to assess the child or adult’s body type and personality and design a specific programme of realistic and achievable physical activities that can be completed in solitude, and do not involve activities in a social context where there is a risk of ridicule. We recognize that regular exercise is excellent for mental and physical health, but also to improve clarity of thought and problem-solving abilities. ‘Exercise will make you smarter’ is a concept we explain to autistic children and adults who often value and seek to demonstrate their intellectual ability.

Some autistic children and adults have identified that destruction is a physical tool that can be a very effective ‘quick fix’ to end unpleasant feelings of suppressed or increasing anxiety, depression and anger. At home, there are some household activities that provide a satisfying and constructive release of potentially destructive energy, without causing damage that may require expensive repairs.  For example, empty cans, water bottles or packaging can be crushed for recycling, or old clothes torn up to make rags. This ‘creative destruction’ might be the repair mechanism of first choice at home, and especially when returning home from school or work.

Relaxation tools

Typical children and adults usually know intuitively how to relax, and it is a state of mind that they will have often experienced. This may not be the case with an autistic person. Our extensive clinical experience has indicated that there is often a difficulty in achieving a state of relaxation, and confusion as to what to do when someone says, ‘Just relax.’

Relaxation tools help the person lower their heart rate and gradually release and reduce emotional energy. Perhaps a picture of a paintbrush or spirit level could be used to illustrate this category of tools for emotional repair. Relaxation tools or activities could include drawing, reading and especially listening to calming music to slowly unwind negative thoughts and fears. Routine chores or activities can result in a sense of accomplishment, satisfaction and relaxation when complete.

A characteristic of autism is find that solitude, in the sense of being alone rather than lonely, is a very effective means of relaxing. Being away from people, and from certain sensory experiences – perhaps retreating to a quiet, secluded sanctuary – is an effective way of reducing anxiety and stress, and achieving relaxation and emotional repair. The autistic person will need islands of tranquillity and solitude both at school or work and at home.  It may be possible for the autistic child or their parent to talk to a teacher about accessing somewhere secluded at school during break times or recess, for example, the library. Such solitude can be emotionally refreshing and a means of true and deep relaxation. A further source of relaxation can come from being in nature, walking or camping in a natural environment, with few social encounters and only natural sensory experiences and engaging with the wildlife.

Cue-controlled relaxation is also a useful emotion repair tool. The strategy is for the person to have an object, perhaps hidden in his or her pocket, that, through association, symbolizes and engenders feelings of being calm and relaxed. For example, an autistic child may feel relaxed when on holiday and going fishing: thus, a fishing float in a pocket can be retrieved and looked at to recreate the feelings, images and sensations of relaxation and enjoyment when fishing.

Meditation tools

In Western cultures, there is a growing awareness and appreciation of the value of activities such as yoga in encouraging a general sense of well-being and providing an antidote to anxiety. We now have yoga activities specifically developed for autistic children to use at school and home (Betts & Betts, 2006; Bolls & Sewell, 2013; Mitchell 2014; Hardy, 2015), and some teachers are now using classroom and individual meditation activities to encourage relaxation and enhanced attention for the whole class. Mindfulness is also being used to regulate attention toward the present moment, to let an emotion pass and encouraging an attitude of openness and acceptance using imagery, meditation and yoga (De Bruin et al., 2015).

A meta-analysis of 123 studies of the effects of meditation of the brain found that eight regions of the brain were consistently enhanced in meditators (Fox et al. 2014). All eight brain areas are associated with autism. Thus, meditation can be perceived as a form of therapy for autism.

Social tools

This tool is to be with someone, or an animal, that can help repair the mood. These tools could be represented by a sponge to soak up the emotional distress. The social experience will need to be enjoyable and without the stress that can sometimes be associated with socialising, especially when the interaction involves more than one other person. For an autistic person, two are company, three a crowd. There are social experiences that reduce anxiety, for example, being with someone who has the ability to be like an emotional ‘sponge’, soaking up worries and anxious thoughts; a particular family member, teacher or colleague who accurately ‘reads’ the autistic person’s emotional state and intuitively knows what to say or do to be reassuring and calming. Another social tool, in the broadest sense, is spending time with pets that are non-judgemental listeners and more forgiving and accepting than humans. Sometimes, even just looking at photographs of favourite people and pets on a mobile phone or iPad can significantly decrease anxiety, despair, and agitation.  Someone emotionally close to an autistic child or adolescent could make an audio recording of soothing comments on their mobile phone to help them cope with extremely anxious or distressing moments.

Helping others

Another tool is the act of helping someone and being needed – an altruistic act. Autistic individuals can change their mood from self-criticism and pessimism to a feeling of self-worth and resilience when they experience opportunities to help and be of value to others. This can include activities such as helping someone who has difficulties in an area of the autistic person’s talents or expertise: for example, helping a teacher or sibling fix a problem with a computer. Being needed and appreciated is a significant emotional repair mechanism for all of us, including autistic individuals.

Internet activities

Internet support groups and conversations between subscribers or multi-player games participants can be an effective emotional repair mechanism. Autistic individuals often have greater eloquence and insight disclosing their inner thoughts and feelings by typing rather than talking; they don’t need skills with eye contact, or to be able to read a face or understand changes in vocal tone or body language when engaged in a ‘conversation’ on the Internet. The chat line or Internet conversation can include other autistic people who have genuine empathy and may offer constructive suggestions to repair a mood or situation.

Thinking tools

Another type of implement, such as a screwdriver or wrench, or a repair manual, can be used to represent a category of tools that can be used to change thinking or provide knowledge. The autistic person is encouraged to use his or her intellectual abilities to control feelings such as anxiety by using a variety of techniques such as self-talk or an internal dialogue such as, ‘I can control my feelings’, ‘I can stay calm’, or, ‘be a mirror, not a magnifying glass’. By using words and thoughts that are reassuring and encourage self-confidence and emotional resilience, the autistic person is encouraged to create a ‘force field,’ ‘suit of armour’ or ‘umbrella’ for emotional protection.

A thinking strategy is the creation of ‘antidotes to poisonous thoughts. The procedure is to think of a comment that neutralizes or is an antidote to negative (poisonous) thoughts. For example, the negative thought, ‘I can’t do it’ (poisonous thought) can be neutralized by the antidote, ‘If I stay calm, I will be quicker at finding the solution’; or ‘I’m a loser’ can be neutralized by the antidote, ‘but I’m a winner at Minecraft.’ A list is created of the person’s negative or poisonous thoughts, and the parent or teacher helps create a personalized antidote to each thought. Cognitive Behaviour Therapy (CBT) focuses on discouraging maladaptive thinking and encouraging adaptive thinking and CBT has been adapted to accommodate the characteristics of autism (Scarpa, Williams White and Attwood 2013). The maladaptive thinking associated with autism is a tendency to catastrophise (meltdown) or supress (engage in a special interest) and CBT encourages adaptive thinking such as self-soothing, perceiving alternative perspectives and the disclosure of feelings to others.

Academic or intellectual achievement

A tool that can be used with autistic children and adults to reduce anxiety and improve mood and resilience, is the achievement of academic success or acquiring knowledge on the Internet. When an autistic child is anxious or agitated in class, the teacher may instruct the child to complete an academic activity that he or she enjoys, and for which the child has a natural talent, such as solving mathematic problems, spelling, playing an instrument or drawing. This is in contrast to typical children, who would probably try to avoid academic tasks when stressed. Adults may reduce stress and improve their mood and self-esteem by seeking knowledge via the Internet or reading.

Additional tools: Sensory sensitivity, nutrition and sleep

The exploration and analysis of the causes of anxiety may include sensory sensitivity (Green & Ben-Sasson 2010). Experience has indicated that repeated exposure to the sensory experience does not easily lead to habituation and a reduction in sensitivity. Sensory sensitivity appears to be a life-long characteristic of autism, with adults creating life circumstances to avoid some sensory experiences or, with maturity, learning to consciously endure and tolerate such experiences, even though they may be just as aversive as they were during childhood. An occupational therapist may be able to provide advice on strategies to reduce or tolerate sensory sensitivity. For example, auditory sensitivity can be for both sounds of a particular pitch or volume, or general noise levels, and can include difficulty filtering out background sounds to focus on a teacher’s or line manager’s voice. Anxiety can occur due to the possibility of not being able to hear important instructions. Specific sounds can be avoided, or encountered less frequently, such as someone shouting; or being prepared and supported for particular events, such as fire alarm testing. A Sensory Integration Programme created and conducted by an occupational therapist may reduce sensory sensitivity.

Clinical experience and advice from mature autistic adults suggest that physical and emotional well-being can be improved by reducing the amount of junk food consumed and having a good diet with nutritious food (Attwood, et al., 2014). While junk food is popular, well-advertised and easy to acquire, and can provide some comfort in the short term, the problems, which range from unstable mood to weight gain, outweigh the perceived benefits. Healthy food does contribute to a healthy mind.

We recognize that autism is associated with a range of sleep disorders (Chen et al 2021; Kotagal, & Broomall, 2012;). Sleep has many functions, one of which is to refresh mind and body. The sleep cycle associated with autism can be unusual, for example, taking some time to actually fall asleep (especially if worried about events of the day, or fearfully anticipating the next day), with a tendency for there to be a disturbance of the depth and quality of sleep subsequently. While attention to, and modification of, sleep routines, and medications such as Melatonin, can all help establish a reasonable sleep cycle, if problems persist, a referral to a sleep clinic may be needed. Having restful and deep, uninterrupted sleep can lead to an improvement in the ability to manage emotions such as anxiety.

Summary for the emotional toolbox

We recognise that autistic children and adults will have difficulties managing and expressing feelings which become increasingly significant throughout childhood, and especially in the adult years. Autistic adults often rate problems with anxiety and depression as having a far greater effect on their daily lives than making and keeping friends and getting and keeping a job (Attwood, et al., 2014). Thus, we need to recognize the importance of emotion repair at home, school and at work.

References

Attwood, T. Evans C. & Lesko A. (2014). Been There. Done That. Try This!: An Aspie’s Guide to Life on Earth. London: Jessica Kingsley Publishers.

Betts, D. E., & Betts, S. W. (2006). Yoga for children with autism spectrum disorders: a step-by-step guide for parents and caregivers. London, Jessica Kingsley Publishers.

Bolls, U. D., & Sewell, R. (2013). Meditation for Aspies: Everyday Techniques to Help People with Asperger Syndrome Take Control and Improve Their Lives. London: Jessica Kingsley Publishers.

Chen et al (2021) Sleep problems in children with Autism Spectrum Disorder: A multicenter survey. BMC Psychiatry 21:406

De Bruin, E. I., Blom, R., Smit, F. M., Van Steensel, F. J., & Bögels, S. M. (2015). MYmind: Mindfulness training for Youngsters with autism spectrum disorders and their parents. Autism, 19(8), 906-914.

Fox et al 2014, Neuroscience & Biobehavioural Review, (Apr), 20140409.

Green, S. A., & Ben-Sasson, A. (2010). Anxiety disorders and sensory over-responsivity in children with autism spectrum disorders: is there a causal relationship?. Journal of Autism & Developmental Disorders, 40(12), 1495-1504.

Hardy, S. T. (2014). Asanas for Autism and Special Needs: Yoga to Help Children with their Emotions, Self-Regulation and Body Awareness. London.  Jessica Kingsley Publishers.

Kotagal, S., & Broomall, E. (2012). Sleep in children with autism spectrum disorder. Pediatric Neurology, 47(4), 242-251.

Lang, R., Regester, A., Lauderdale, S., Ashbaugh, K., & Haring, A. (2010). Treatment of anxiety in autism spectrum disorders using cognitive behaviour therapy: A systematic review. Developmental Neurorehabilitation, 13(1), 53-63.

Mitchell, C. (2013). Mindful Living with Asperger’s Syndrome: Everyday Mindfulness Practices to Help You Tune in to the Present Moment. London. Jessica Kingsley Publishers.

Scarpa, A., Williams White, S. and Attwood T. (Eds) (2013) CBT for Children and Adolescents with High Functioning Autism Spectrum Disorders. New York, The Guilford Press