Autism and Substance Addiction

Autism and Substance Abuse

We have seen an increasing number of autistic adolescents and adults with signs of substance addiction, usually alcohol but also illegal substances such as marijuana, amphetamines and opiates and the misuse of prescription medication such as benzodiazepines. Why are autistic individuals at risk of developing substance addiction? The simple explanation is to engage or escape reality and moderate intense emotions.

Engage reality

A fundamental characteristic of autism is difficulty socialising and subsequent social anxiety. Alcohol and marijuana can be used as a relaxant in social situations. The autistic person may find socialising easier when mildly intoxicated, with a sense of calmness and competence. An autistic adult explained Alcohol makes verbal communication easier (Brosnan & Adams, 2020). Unfortunately, the autistic person may depend on these substances to facilitate social engagement. An autistic adult explained: Alcohol is relaxing and provides happiness, and another autistic adult said that alcohol is A central solvent that my body chemistry has been missing. Alcohol is my cure for anxiety. Marijuana can have similar effects I smoke pot to make my anxiety and autism go away. It’s the only time I feel on the same wavelength as everyone else (Weir et al., 2021).

At the end of the working day, when a non-autistic person is exhausted and stressed, they may seek energy replenishment and relieve their tension via compassion, gestures of affection and conversation from a supportive person in their life. These interpersonal energy and emotion repair mechanisms may be less effective for an autistic person. Alcohol may be their preferred means of relaxation, and a daily routine of alcohol consumption becomes established.

Another characteristic of autism in adolescence is the tendency to be rejected by peers, engendering feelings of a lack of connection and not belonging to any specific group or culture. The acquisition and consumption of alcohol and drugs – easily available and the ‘currency’ of popularity and status – can provide membership in a sub-culture composed of others who also do not fit into conventional society. This group accepts those who are not popular. This sub-culture has clear rules and expectations regarding how to dress, talk and behave and has its own language and rituals. Friendships are formed, and the person is warmly welcomed, especially if he or she colludes with group members to acquire mood-altering substances, and the autistic group member avidly acquires knowledge on drugs from the Internet and becomes the respected expert for members of the group to consult on drug effects, dosage and interactions.

Many autistic adolescents and adults have extreme anxiety levels and describe trying to cope with racing thoughts, which are difficult to slow down, and ruminations, which are extremely difficult to block. Alcohol and drugs especially opiates and marijuana, can decelerate thoughts that are speeding out of control and block ruminations. 

Some medications prescribed to reduce anxiety, such as benzodiazepines, can themselves become addictive after several months, with the person developing increased tolerance, impaired cognitive abilities, memory problems and mood swings. There can also be a dangerous misuse of other prescription medications and substances as the person self-medicates for anxiety, with the potential for hazardous drug interactions and the very real danger of accidental overdose. There is also the risk of conflict with the law and entry into the Criminal Justice System (Attwood, 2019).

Another contributory factor for an autistic person to maintain substance addiction is ADHD. We know that most autistic individuals also have signs of ADHD which can lead the autistic addict to be impulsive and not consider the long-term consequences of drugs on themselves and their family, and want almost instantaneous relief from intense and unbearable emotions, especially anxiety. Psychological emotion regulation strategies such as cognitive behaviour therapy, mindfulness and Yoga take time and effort.

There are high levels of unemployment associated with autism, leading to boredom, frustration and a sense of uselessness and under-achievement. Being part of the drug culture can provide purpose and structure for the day. There is a sense of achievement in seeking and finding drugs and an opportunity to leave one’s accommodation and meet people within the drug culture.

Escape reality

The use of mind-altering substances can provide a sense of protection, ‘anaesthetising’ the person from the effects of past trauma, such as being bullied or being the victim of emotional, physical, financial, or sexual abuse.  Being in an emotionally safe ‘bubble’ creates a sense of emotional detachment. An autistic addict described self-medication as an escape from pain and genuine relief.

Alcohol, marijuana and illegal drugs seem to suppress or ‘switch off’ the frontal lobes, the thinking part of the brain. Autistic individuals need their frontal lobes to efficiently process social information and cognitively moderate emotions. When intoxicated, an autistic person may increase their autistic characteristics and have impaired decision-making, affecting their quality of life.

Research on autism and substance addiction

Rengit et al. (2016) confirmed our clinical experience that substance use for autistic individuals often alleviates anxiety and inclusion in a subculture. The association with autism, ADHD and substance abuse was confirmed by Butwicka et al. (2017). The same study found that substance use-related problems have been observed among 19%-30% of adult autistic clients in general clinical settings. A study of consecutive intake assessments at a substance use disorder clinic for young adults using a screening instrument for autism found that 20% had autistic characteristics (McKowen et al., 2021). 

A systematic review of relevant research by Ressel et al. (2020) suggested that up to 36% of autistic individuals have co-occurring issues with substance abuse. An online survey of over 500 autistic adults found that the rate of heavy episodic drinking was 54%, with the rate in the non-autistic population being 17%. (Brosnan and Adams 2020). The strongest motivations were for social reasons and to enhance positive feelings, and 45% indicated they would not seek support for their substance use, with barriers to support including that it would occur in an unfamiliar chaotic environment and anticipating being misunderstood and judged by rehabilitation staff.

What to do when there are signs of addiction

The first stage is to recognise the addiction, which may affect mental and physical health and family dynamics and potentially lead to criminal activities to pay for the substances. The person who has the addiction may lack insight into the depth of the addiction, failing to recognise their inability to cope without mind-altering substances. If there is recognition of the addiction, there nevertheless may be resistance to reducing the level of substances or engagement in the drug culture, as the person may not be able to conceptualise life without their support in regulating emotions and disengaging from the drug culture. The idea of ‘kicking the habit’ can be frightening because it involves the unknown and trusting the effectiveness of alternative emotion management and social engagement strategies.

The second stage is to address the dysfunctional use of substances. This may mean providing alternative prescribed and carefully administered, and supervised medication. Throughout this process, access to a clinical psychologist is beneficial to provide advice, treatment and support for anxiety management and fear of being able to cope without illegal or misuse of legal substances, to encourage the development of social skills, new social networks and a resilient sense of self.

While the diagnosis of autism may provide a rationalisation for the addiction, it must also be considered when accessing support and therapy services. There will be those who enter the treatment services for addiction who have undiagnosed autism; it is important that there is routine screening for autism in all new participants in rehabilitation therapy and services for addiction, not only to determine the possible reasons for the addiction but also, importantly, to modify the therapy according to the characteristics of autism.

Rehabilitation services often rely on social living and group therapy and provide limited personal space and solitude opportunities. An autistic client will benefit from a single room wherever possible. They will also need guidance and support in group therapy’s social and disclosure requirements due to the characteristics of alexithymia, that is, converting thoughts and feelings into conversational speech. In a rehabilitation service, reading social and interpersonal dynamics can be difficult for an autistic person as well as recognising social and personal boundaries, knowing when to talk and not talk in a group, understanding how to resonate with the experiences and emotions of fellow addicts, and acknowledging the relevance of self-disclosure in a group setting. Staff need to know of these autistic characteristics and must make appropriate accommodations.

A study by Helverschou et al. (2019) found that typical interventions for treating addiction are often unsuitable for autistic adults. They recommended regular staff education on autism and accommodating the characteristics of autism in group sessions. The study also affirmed the perception of autistic participants in therapy as being drug experts and providing advice to staff and fellow residents on drug doses and combinations of drugs. The research also identified a tendency for autistic individuals to end their drug use their own way and not follow a recommended reduction plan.

Our clinical experience confirms that sometimes the autistic person can decide to end an addiction without a therapeutic plan and support. This takes great determination and relies on one of the characteristics of autism: once a decision has been made, the person is unwavering in seeking a resolution and the desired outcome.

A recent survey of over 100 drug and alcohol therapists’ perceptions of current service provision for autistic clients found that most therapists had received no autism-specific training, with alcohol misuse as the most common presenting issue, and most therapists reported that treatment outcomes were less favourable for autistic clients (Brosnan & Adams, 2022). They found an eclectic approach to be the most helpful and psychodynamic least helpful. Autistic clients tended to lack insight into the therapeutic process, were resistant to therapy suggestions, considered therapists as not understanding them or had inferior intellect. The authors recommend a range of therapeutic adaptations, such as using plain language, a more structured and concrete approach, shorter sessions and using hobbies and interests as part of therapy and more written and visual information.

The stress of group engagement, accepting treatment models, and staff not understanding autism can lead to premature voluntary discharge from residential rehabilitation services. The autistic person may become convinced that such services can never be effective. Rehabilitation services need to become more autism-friendly, and psychologists and psychiatrists need to develop an addiction treatment model specifically designed for the characteristics of autism and reasons for substance addiction in collaboration with autistic adults who are or were addicted to substances.

Once the addiction seemingly ends, there is still the risk of relapse. It is important for the autistic person and their family members to accept lapses before there is complete and enduring freedom from addiction. It will be important that the person does not interact with previous drug associates, the associated culture and potential triggers. There will need to be support for stress and emotion management, encouragement to increase the network of social contacts and enjoyable social experiences, and the introduction of a new lifestyle and schedule of daily activities. Recovering from addiction is a long road, but the journey and destination may be lifesaving.

Resources

Jackson (2016). Sex, drugs and Asperger’s syndrome London, Jessica Kingsley Publishers

Kunreuther & Palmer (2018). Drinking, drug use and addiction in the autism community London, Jessica Kingsley Publishers

Regan (2015) Shorts: Stories about alcohol, Asperger syndrome and God  London, Jessica Kingsley Publishers

Tinsley & Hendrickx (2008). Asperger syndrome and alcohol: drinking to cope? London, Jessica Kingsley publishers

References

Attwood W.  (2019). Asperger’s Syndrome and Jail: A survival guide London, Jessica Kingsley Publishers

Brosnan & Adams (2020). Autism in Adulthood

Brosnan & Adams, (2022) Autism in Adulthood

Butwicka et al. (2017). Journal of Autism and Developmental Disorders

Helverschou et al. (2019) Substance Abuse: Research and Treatment

McKowen et al (2021) The American Journal of Addictions

Rengit et al. (2016) Journal of Autism and Developmental Disorders

Ressel et al. (2020) Autism

Weir et al. 2021 Lancet Psychiatry

Internet gaming and Autism

Internet gaming and Autism

The parents of autistic teenagers and young adults are increasingly worried about how much time their son or daughter spends on Internet gaming. However, the autistic person may be worried that the amount of time they spend on Internet gaming could be reduced by their parents. Clinicians and parents may be concerned that a young autistic person’s interest in Internet gaming could evolve into addiction.

Gaming disorder or video game addiction is recognised worldwide. It has increased with the advent of broadband technology, games allowing for the creation of avatars, ‘second life’ games and MMORPGs (massive multiplayer online role-playing games). World of Warcraft has the largest MMORPG community online, and there have been studies confirming the addictive qualities of the game. Indeed, modern computer games have adopted aspects of the gambling industry, for example, purchasing Loot Boxes within the game.  The content of a Loot Box is unknown and purchased directly or available during play, with the gamer subsequently buying “keys” to redeem them.  Game developers see loot boxes as a way of generating ongoing revenue and keeping player interest in gaming through loot-box reward systems. This can contribute to the addictive nature of Internet gaming.

The diagnosis of Internet Gaming Disorder

The recent edition of the Diagnostic and Statistical Manual of Mental Disorders, 5th edition, Text Revised, provides diagnostic criteria for Internet Gaming Disorder (APA 2022, pages 913-916). There are nine criteria, and confirmation by a clinician of five or more are likely to confirm the diagnosis. The nine criteria are:

  1. Preoccupation with Internet games, such that gaming has become the dominant activity in daily life.
  2. Withdrawal symptoms when Internet gaming is taken away.
  3. Tolerance – the need to spend increasing amounts of time engaged in Internet games.
  4. Unsuccessful attempts to control participation in Internet games.
  5. Loss of interest in previous hobbies and entertainment.
  6. Continued excessive use of Internet games despite knowledge of psychosocial problems.
  7. Has deceived family members, therapists, or others regarding the amount of Internet gaming.
  8. Use of Internet gaming to escape or relieve a negative mood.
  9. Has jeopardised or lost a significant relationship, job or educational or career opportunities because of participation in Internet gaming.

The DSM-5 work group reviewed more than 240 research articles and found some behavioural similarities between Internet gaming and gambling disorder and substance use disorders. The DSM-5 describes individuals with Internet gaming disorder as sitting at a computer and engaging in gaming activities while neglecting other activities and typically devoting 8-10 hours or more each day and at least 30 hours per week. The mean prevalence of gaming disorder among typical adolescent boys was estimated as 6.8% and adolescent girls 1.3%. A recent study of the prevalence of gaming addiction in autistic teenagers and young adults indicated that 9.1% reported symptoms over the cut-off for gaming disorder (Murray et al., 2022).

Research on gaming addiction and autism

A recent systematic review of the research literature on autism and video game use confirmed that autistic children, adolescents and adults are at greater risk of problematic video gaming than typical peers (Craig et al. 2021). The studies indicated that, on average, autistic individuals spend over 2 hours playing Internet games each day with a weekly average of 12-17 hours. This is below the level of gaming to confirm a formal diagnosis of Internet Gaming Disorder but greater than typical peers and paediatric guidelines. Autistic children also play more Internet games than their non-autistic siblings and spend more time playing Internet games than other extracurricular activities.

A study of over 100 autistic adolescents by Hirota, McElroy, and So (2021) identified that a characteristic of their Internet gaming was defensive and secretive behaviours and concealment of Internet use from their parents. The subsequent issues included the effects on school grades, decreased ‘healthy’ social engagements and neglecting household chores to spend more time online.

Research on autistic adolescents’ sense of self-identity included an analysis of the answers to the question. What do you enjoy most? The most enjoyable experience was access to technology and gaming (Clarke and Adams 2020).

Why do autistic individuals spend so much time on Internet gaming?

The reasons typical adolescents and young adults engage in Internet gaming are:

1: Achieve a temporary escape to help deal with stress and get away from a current situation

2: Create a sense of community and connection to meet like-minded people

3: Experience instant gratification and feedback to confirm progress in the game

4: A challenge to overcome and to have a sense of purpose, a goal to work towards

All these reasons apply to an autistic person, but there are additional reasons. These include being popular with fellow gamers who seek and admire their gaming abilities, knowledge, and guidance. Popularity with peers can seem elusive for autistic adolescents.

There is little, if any, social chit-chat and no requirements to process non-verbal communication or follow social conventions. There is also the possibility of becoming an avatar, creating an alternative non-autistic persona and reality.

Our clinical experience is that engaging in Internet gaming provides a high level of excitement and enjoyment for someone who may be depressed and have little to enjoy and look forward to. Internet gaming also acts as a thought blocker and a means of escape from anxious or depressed thinking, and a means of alleviating loneliness and a lack of social connection.  There is also an association between Internet gaming and ADHD, and the majority of autistic adolescents also have signs of ADHD. Thus there are many reasons why autistic individuals are of concern to their families and clinicians for the amount of time they engage in Internet gaming.

Consequences of Internet gaming

The consequences include mental and physical health, lost opportunities, and reduced achievements. Research with participants in the general population has indicated that excessive Internet gaming can increase depressive and anxiety symptoms and increase the risk of substance abuse. Physical symptoms include a weakened immune system due to lack of sleep and daylight, exercise loss and effects on physical fitness, obesity, increased risk for carpal tunnel syndrome, and eye and back strain. There can also be a reduction in academic performance, real-life social relationships and increased family disharmony and conflict.

Reducing the time engaged in Internet gaming

To reduce the amount of Internet gaming time, it is essential to understand why an individual player engages in Internet gaming. Each of the reasons described above needs to be explored and evaluated and to find other ways to meet those needs.

There are programmes designed for non-autistic gamers, such as the Internet and Technology Addicts Anonymous (ITAA), founded in 2017. It is a 12-step programme supporting compulsive Internet users. Media Addicts Anonymous (MAA) is another 12-step programme for media addiction.

Cognitive Behaviour Therapy with Internet Addicts (CBT-IA) has been designed and developed to help the gamer recognise the potential harms of Internet gaming, manage impulse control, identify triggers of Internet binge behaviour and use cognitive restructuring to challenge and modify cognitive distortions and rationalisations to justify excessive Internet use. The programme also helps develop self-identity, interpersonal communication skills and alternative emotion management strategies.

There are support communities for Internet gamers such as StopGaming-Reddit as well as www.gamequitters.com, and in Australia, www.GameAware.com.au developed by Andrew Kinch.

From our clinical experience, we would suggest adding components to conventional game-quitting programmes, such as expanding the person’s social network to include autistic friends and psychological treatment of anxiety and depression that accommodates the characteristics and experiences of autistic teenagers and young adults.  

Parents must consider removing gaming devices from the person’s bedroom, not gaming first thing in the morning and having a game-free day each week for all family members. We recommend a gradual reduction in the total amount of gaming each day, first establishing the accurate real-time spent engaged in gaming and reducing that time by perhaps 15 minutes each day for a week or more, then another 15-minute reduction to reach a goal of a total of two hours a day.

There will need to be careful consideration of activities to replace gaming, such as reading, watching movies and artistic activities, time with friends and new social activities such as Dungeons and Dragons, an autism support group, being with pets, adventure sports and geocaching, martial arts and online and college courses which may include game design.

 

References

APA (2022) Diagnostic and Statistical Manual of Mental Disorders-5 Text Revision. American Psychiatric Association

Clarke and Adams( 2020) Research in ASD 72

Craig et al. (2021) Research in ASD 82, 101726

Hirota, McElroy, and So (2021) Journal of Autism and Developmental Disorders 51, 2764-2772.

Murray et al. (2022) Journal of Autism and Developmental Disorders 52, 2762-2769

 

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

Autistic Mothers

Autistic mothers

As clinicians, we work with families that have one or several autistic children and we have increasingly been able to recognise the subtle characteristics of autism in the profile of abilities of either or both parents. Considerable research has been conducted on autistic fathers but relatively less on autistic mothers. As we explore how autism can be effectively camouflaged by autistic women, we are now more able to identify autism in a mother who may also identify with the abilities and experiences of her autistic child and seek her own diagnostic assessment.

We will combine our extensive clinical experience in supporting autistic mothers with recent research studies to outline the challenges and benefits of being an autistic mother.

Challenges of being an autistic mother

The challenges are based on the core characteristics of autism, namely social abilities and sensory experiences, emotion regulation, communication with a range of agencies and services and self-confidence.

The social demands of being an autistic mother can include attending school and after-school activities, congregating with other parents, for example at the school gate or at a party, supervising play dates and creating social opportunities for their child or children. There can also be concerns regarding a tendency to be very direct and inadvertently offend other mothers. The autistic mother can find the many social experiences very stressful and exhausting, and, being sensitive, can pick up on the sense that she is not connecting with others in the way she would like to, leading to many hours of distress after socialising, analysing what happened and wondering how to experience a different outcome.

Sensory sensitivity can be a challenge in terms of the sudden sharp noises of a child shrieking, coping with the noise and chaos in the home caused by various family members, tactile sensitivity to toddlers climbing on you and the aroma of bodily fluids and substances.

There is also the difficulty of suppressing one’s own emotions when managing a child’s emotions, responding to a young child’s frequent need for affection and touch and ensuring each child receives enough affection from the child’s perspective. Having children can also reduce an autistic mother’s access to emotion recovery mechanisms such as solitude, creative activities, exercise, and engaging in a hobby or interest. There is also coping with the frustration of children interrupting activities and thoughts and children needing attention, conflict resolution and entertainment preventing the achievement of household responsibilities. There are many legitimate reasons for autistic mothers to feel exhausted and depressed.

A mother is often expected to liaise with various government agencies and services, especially if a child is autistic. We have found that autistic mothers can have difficulty communicating with professionals about their children and often feel they are misunderstood, isolated and unfairly evaluated by professionals and other parents. This can lead to extra scrutiny from child welfare agencies and not knowing whom to turn to for compassion and support.

We have found that autistic mothers are prone to lack confidence in their maternal abilities, being unsure if they can rely on intuition. There can also be a sense of perfectionism and self-criticism. There can be challenges in providing their child with guidance in social abilities due to their recognition of having been delayed in acquiring social and friendship skills. However, we have found a great motivation to learn parenting skills, often from literature and the Internet.

Research studies

 In 2021 there were three studies published that explored the abilities and experiences of autistic mothers. These studies have confirmed many of our clinical observations. A study of 355 autistic mothers noted their perception of motherhood as an isolating experience, feeling that their parenting was being judged and having difficulty asking for support when they needed it (Pohl et al 2021). The same study confirmed difficulties with multi-tasking demands of parenting and domestic responsibilities. The study had a control group of non-autistic mothers, and the autistic mothers were more likely to report they were not coping. Autistic mothers also reported a high rate of post-natal depression (60%). However, 85% of autistic mothers reported that motherhood was rewarding to them.

A study of 20 autistic mothers which included 20 matched non-autistic mothers found that both groups expressed equally high levels of parenting stress and no significant differences between the groups in understanding their child’s strengths, abilities and needs and helping the child learn and develop (Adams et al 2021).

A detailed study using semi-structured interviews of 9 autistic mothers with at least one autistic child identified four subordinate themes (Dugdale et al 2021). The first theme confirmed that autism impacts parenting with distinct strengths and difficulties. A shared diagnosis and similarities created a ‘special bond’ with more depth and instinctive understanding of their autistic child’s needs, as illustrated in this quotation from a research participant I’m the one who can get through to him.

They felt they were better able to translate difficulties and mediate conflicts. They also expressed that they struggled to socialize with other parents and manage sensory sensitivities while parenting. There was the added dimension of feeling guilty that they had passed on something possibly genetic.

The second theme was a battle to achieve the right support. They often felt misunderstood, judged, and dismissed. Professionals assumed they were aggressive and did not appear to take their concerns seriously. One autistic mother said people really need to listen to autistic parents… we’re not thick, we see things from a different perspective. The mothers did find greater acceptance from professionals that understood autism. They also sought support from their non-autistic partner to accommodate aspects of parenting they found difficult as in the quotation …he was able to do the make-believe stuff that I couldn’t do.

All participants achieved recognition of being autistic after becoming a parent and the third theme was the effects of having a diagnosis which led to a re-processing of participants’ experiences in a positive way. An example was coping with change and cognitive flexibility which they had struggled with, and the diagnosis helped them become more understanding and accepting of this characteristic of autism. The fourth theme was the ups and downs of parenting with the downs including not fitting into the normal mum’s club and coping with tactile and auditory sensory sensitivity. However, the ups were a sense of intense connection, enjoyment, and rewards. 

Benefits of being an autistic mother

Our clinical experience is that there are many benefits to being an autistic mother. These include creating a home environment where neurodiversity is accepted and admired, as well as encouraging knowledge, creativity, and originality in problem-solving. There is empathy for being bullied, teased, socially rejected and humiliated and a determination to prevent their autistic child from having those experiences.

Autistic mothers ensure there is consistency and routine in daily activities and expectations. There is a preference for logic rather than obedience and seeking opportunities to boost their autistic child’s self-confidence. Autistic mothers can easily explain their autistic child’s social and sensory perception to peers and teachers and encourage an understanding and acceptance of autism that may not have been experienced in their childhood.

Resources and references

We recommend the book Spectrum Women: Autism and Parenting by Renata Jurkevythz, Maura Campbell and Lisa Morgan published in 2020 by Jessica Kingsley Publishers www.jkp.com

Adams et al (2021) Autism in Adulthood 3

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

Pohl et al (2021) Molecular Autism 11:3

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.

Explaining autism to a child or adolescent

Explaining autism to a child or adolescent

The value of an explanation

Our clinical experience indicates that it is extremely important that autism is explained to a child or adolescent as soon as possible after a diagnostic assessment and preferably before inappropriate compensatory reactions such as low self-esteem are developed. The child is then more likely to achieve self-acceptance, without unfair comparisons with other children, and be less likely to develop signs of depression or choose self-isolation. The child can then be a knowledgeable participant in the design of programs, knowing his or her strengths and weaknesses, and why he or she needs to regularly see a particular specialist while siblings and peers do not. The child can also experience a huge sense of relief to know that they are not ‘weird’, just ‘wired’ differently.

When and how do you explain the diagnosis?

At what age do you explain the diagnosis? Children who are younger than about eight years may not consider themselves particularly different to their peers and have difficulty understanding a concept as complex as autism. The explanation for young children will need to be age-appropriate and provide information that is relevant from the child’s perspective. The main themes will be being different not defective and the benefits of programs to help the child make friends and enjoy playing with other children and to help achieve success with schoolwork. There can be a discussion and activities to explain the concept of individual differences and autism, for example, those children in the class who find it easy to learn to read, and others who find it more difficult. Parents can then explain that there is another form of reading, namely ‘reading’ people and social situations and that we have programs to help children who have this ‘reading’ difficulty.

There are now many resources and activities to help parents explain autism and it is up to parents to decide which ones to use to explain autism to their child.

The Attributes Activity

This family activity is for children over the age of about eight years to the early teenage years. We developed the Attributes Activity to explain the diagnosis to the child and family, including siblings and grandparents. We suggest arranging a gathering of family members, including the child or adolescent who has recently been confirmed as autistic. This activity requires temporarily attaching to the wall of the room, several large sheets of paper, or using a large whiteboard divided into several sections. Each sheet of paper or section is divided into two columns, one column headed ‘Qualities’ and the other ‘Difficulties’. We suggest the child’s mother or father as the first person to complete the first stage of the activity, which involves identifying and listing personal qualities and difficulties (these can include practical abilities, knowledge, personality, and passions). After the first focus person has made his or her suggestions, the family add their suggestions. It is important to ensure that this is a positive activity, commenting on the various attributes and ensuring that there are more qualities than difficulties. Another family member is then nominated or volunteers to suggest his or her qualities and difficulties. The autistic child or adolescent can observe and participate and understands what is expected when it is time for his or her turn.

Sometimes the autistic person is reluctant to suggest or may not consider him- or herself to have many qualities or attributes. The family are encouraged to make suggestions from their perspective. There will need to be some care when nominating difficulties so that the person does not feel victimized or despondent. The following is a representation of the Attributes Activity for an autistic child.

QualitiesDifficulties
HonestAccepting mistakes
DeterminedMaking friends
An expert on insects and the TitanicTaking advice
Aware of sounds that others cannot hearManaging my anger
KindHandwriting
ForthrightKnowing what someone is thinking
A loner (and happy to be so)Avoiding being teased
A perfectionistShowing as much affection as other family members expect
A reliable friendCoping with sudden noises
Good at drawingExplaining thoughts and feelings using speech
Observant of details that others do not see 

Exceptional at remembering things that other people have forgotten

Humorous in a unique way
Advanced in the knowledge of mathematics
Liked by adults

The Attributes activity was originally published in 2007 in Tony’s The Complete Guide to Asperger’s Syndrome and subsequently used as the basis of The Amazing Autistic Brain Cards: 150 Cards for Positive Autism Discussions by Gloria Dura-Vila published in 2021 by Jessica Kingsley Publishers. The child or parents can choose which card describes a quality or difficulty for an autistic child or adolescent.

Parents then make comments on each quality and difficulty and then explain that scientists are often looking for patterns; when they find a consistent pattern, they like to give it a name. The name to describe your pattern of abilities is autism.

We recommend saying to the child, ‘Congratulations, we have discovered that you are autistic’, and explain that this means he or she is not mad, bad, or defective, but has a different way of perceiving, thinking, learning, and relating. The discussion continues with an explanation of how some of the child’s talents or qualities are due to autism, such as his or her extensive knowledge about lawnmowers or horses, ability to draw with photographic realism, attention to detail and being naturally talented in mathematics. This is to introduce the benefits of having autism.

The next stage is to discuss the difficulties and the strategies needed to improve specific abilities at home and school. This can include the advantages of programs to improve the ability to ‘read’ people, Cognitive Behaviour Therapy (CBT) and/or medication that can help with emotion regulation, and ideas and encouragement to improve making and keeping friendships. Parents may mention successful people in the areas of science, information technology, the arts and caring professions who benefited from being autistic (Elder 2006; Fitzgerald 2005; James 2006; Ledgin 2002; Ortiz 2008; Paradiz 2002; Santomauro 2012). As Temple Grandin, an autistic woman who has become a successful engineer, author and academic, said, ‘If the world was left to you socialites, we would still be in caves talking to each other.’ (Personal communication)

When explaining the development of autistic abilities associated with an adolescent, we sometimes use the metaphor of a clearing in a forest. The ‘clearing’ represents the development of the brain, and the emergence of plants and saplings in the clearing represents the development of different brain functions. In the clearing, one sapling grows very rapidly and creates a canopy above the other plants and a root structure that restrict access to sunshine and nutrients, thus inhibiting the growth of competing plants. The dominant sapling, which soon becomes a tree, represents the parts of the brain dedicated to social reasoning. If that ‘social reasoning’ sapling does not develop quickly and become dominant, then other trees, or abilities, may become stronger. These plants represent abilities in mechanical reasoning, music, art, mathematics and science, and the perception of sensory experiences. An autistic person often prioritises the pursuit of knowledge, perfection, truth, and the understanding of the physical world above feelings and interpersonal experiences. This can lead to valued talents but also vulnerabilities in the social world and will affect self-esteem. The child or adolescent may then see autism as an explanation of his or her talents as well as difficulties.

Who else needs to know?

After explaining autism to the child or adolescent, it is important to discuss who else needs to know. Children and adolescents may be concerned about how their peers will respond to the news and any potential negative reaction. Parents need to examine and discuss the issues surrounding disclosure, based on the advantages and disadvantages of certain people knowing, and how much information to disclose. We have found that autistic adolescents can be very sensitive to the anticipated reaction of their peers and are more reluctant to share the disclosure of autism. The child or adolescent’s opinion is respected regarding the question of whether peers should be told.

If the child does want the other children to know, there needs to be an agreement as to how widely the information will be disseminated, how it will be done, and whether the autistic child or adolescent should be present. Carol Gray has developed a program, The Sixth Sense, to explain autism to a class of children in an elementary or primary school (Gray 2002). She has designed a range of classroom activities based on learning about the five senses that are extended to include a ‘sixth sense’, the social sense, which is the perception of social cues. Peers can then discover what it would be like to have difficulty perceiving the social cues and thoughts and feelings of others, and what they can do to help someone develop the sixth sense. We now have other published resources to help explain autism to peers and siblings (see resources section below).

References

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

Elder, J (2006) Different Like Me: My book of autism heroes Jessica Kingsley Publishers

Fitzgerald, M. (2005) The Genesis of Autistic Creativity: Asperger’s syndrome and the arts. London: Jessica Kingsley Publishers.

Gloria Dura-Vila (2021) The Amazing Autistic Brain Cards: 150 Cards for Positive Autism Discussions Jessica Kingsley Publishers

Gray, C. (2002) The Sixth Sense II. Arlington, TX: Future Horizons.

James, I. (2006) Asperger’s syndrome and High Achievement: Some very remarkable people. London: Jessica Kingsley Publishers.

Ledgin, N. (2002) Asperger’s and Self-esteem: Insight and hope through famous role models. Arlington, TX: Future Horizons.

Ortiz, J. (2008) The Myriad Gifts of Asperger’s Syndrome Jessica Kingsley Publishers

Paradiz, V. (2002) Elijah’s Cup: A Family’s Journey into the Community and Culture of High Functioning Autism and Asperger’s Syndrome. New York: The Free Press.

Santomauro, J. (2012) Autism All-Stars: How we use our autism traits to shine in life Jessica Kingsley Publishers

Books and resources

There are many books and resources that can help explain autism to a child or adolescent and we have provided below a list of recommended resources. Parents can supplement an explanation of autism by encouraging the child or adolescent to read fiction with a central character being autistic. Kathy Hoopmann has written several excellent adventure stories that autistic children and adolescents find fascinating, and they identify with the experiences and abilities of the autistic hero of the story.

Some of the books and resources refer to Asperger’s syndrome which before 2013 was the term used to describe autism spectrum disorder level 1. All the following books are published by Jessica Kingsley Publishers with more information at www.jkp.com

Books for primary school children

Bulhak-Paterson (2015) I am an Aspie Girl

Hoopmann (2021) All Cats are on the Autism Spectrum

Hoopmann (2013) Inside Asperger’s Looking Out

Klemenc (2013) What Is It Like to be Me?

 Books for high school children

Jackson L. (2002) Freaks, Geeks and Asperger Syndrome

Monahan F (2019) Know Your Spectrum: An Autism Creative Writing Workbook for Teens

Fiction

Kathy Hoopman’s trilogy: Blue Bottle Mystery, Of Mice and Aliens and Lisa and the Lace Maker and her science fiction novel for adolescents Elemental Island

Books for parents

Dundon R (2018) Talking with your Child about their Autism Diagnosis: A guide for parents

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

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Signs of autism when first meeting a client

Signs of autism when first meeting a client

Introduction

This blog is for clinicians, therapists, and counsellors to help identify the characteristics of autism in a client who has not previously been considered autistic. We describe the signature characteristics of autism that may be apparent when first meeting a client or over several appointments when exploring their developmental history and profile of abilities. The blog is based on our extensive clinical experience and the formal diagnostic criteria for autism spectrum disorder (APA 2022).

Prevalence and pathways

According to the Centers for Disease Control and Prevention (CDC), the prevalence of autism in 2022 was estimated as one in 44 eight-year-old children. However, this is a conservative estimate, as many autistic adults camouflage and suppress their autistic characteristics in social situations or choose a career that minimises the effects of autism, as a form of compensation. Camouflaging and compensation may delay professional recognition of autism until the adult years.

There are many pathways for an autistic person to seek psychological, psychiatric, or mental health team support or counselling for career and relationship issues. We recognise that 79 per cent of autistic adults meet the criteria for a psychiatric disorder at least once in their lives (Lever and Geurts 2016). The most common concerns are high levels of anxiety and episodic depression. Other pathways are needing assessment and therapy for trauma, an eating disorder, borderline personality disorder, attention deficit disorder, gender dysphoria, addiction, and schizophrenia. There may also be issues regarding achieving and maintaining friendships, employment, or a long-term relationship.

As the conversation with the client develops, the characteristics of autism may slowly emerge in their conversational abilities, social development, emotional communication, cognitive profile, ability to cope with change, interests, and sensory sensitivity.

Conversation abilities

The client’s conversation ability, while often demonstrating sophisticated vocabulary and depth of knowledge, may also include subtle difficulties with the pragmatic aspects of language, unusual prosody, a tendency to make a literal interpretation, and difficulty with the comprehension and expression of nonverbal communication. The pragmatic aspects include the degree of reciprocity or ‘balance’ in the conversation: the person may talk too little or too much. When too little, there will need to be an encouragement to say more than a few words in reply to a question and to provide some degree of elaboration and personal examples that illustrate a specific topic. When talking too much, the client’s conversation may be perceived as a one-sided monologue. There can be a difficulty in determining when the person has completed what they want to say, for example, failing to give eye contact to indicate your turn to speak. In contrast, the client may frequently interrupt their conversation partner to make a comment or correct an error, oblivious of the signals not to interrupt, or that the person may be offended by the correction.

There may also be difficulties knowing how to maintain and repair a conversation by seeking clarification and more information, as well as modifying language according to the social context. The client may also engage in too much or too little disclosure of personal or confidential information.

Prosody may be unusual in terms of the speed, volume, rate, rhythm, and ‘melody’ of speech. There may be a lack of vocal tone and volume to indicate emotion and keywords, and an unusual placement of stress and precise intonation. There can be a tendency to take a literal interpretation, which may become apparent when the other person uses idioms, sarcasm or ‘figures of speech’.

One of the central characteristics of autism is difficulty focusing on and reading nonverbal communication, which can become conspicuous during a conversation. There may be unusual aspects of eye contact in terms of eye-contact frequency, duration, and ability to read another person’s facial expressions to modify the conversation. The person may be listening but not looking at the face of their conversation partner at key points in the interaction when eye contact would not be anticipated. One adaptation to autism is to appear to be looking at the person’s face, but instead focusing on their ears or forehead rather than their eyes, thus failing to determine what their conversation partner is thinking or feeling. And sometimes, even though there may be a focus specifically on someone’s eyes, there may still be difficulty reading facial expressions. As one autistic adult said, “People give messages with their eyes, and I don’t understand them.”

The difficulty reading nonverbal communication can occur for both conversation partners; the client’s facial expressions may be perceived as ‘still’ or ‘wooden’, and thus difficult to read. Their gestures may be limited or ‘stylised’, sometimes mimicking the gestures and posture of the conversation partner. There may be less use of nodding agreement, reciprocal smiles or complimentary sounds of compassion and interest.

Social abilities

An exploration of social abilities and experiences may reveal difficulty making and keeping friends, delayed Theory of Mind abilities, a history of being bullied at school and work, and evidence of relatively effective but superficial social abilities.

During childhood, there is likely to have been a time when the client first recognised that their social and friendship skills were not as advanced and complex as those of their peers. There may have been, and continue to be, a preference for solitary rather than social activities. During childhood and adolescence, there would have been a desire to establish and maintain friendships without a complete or realistic idea of what friendship entails. It is through extensive friendship experiences that we not only learn relationship skills, such as the art of compromise and conflict resolution but also recognise the need for emotional as well as practical support.

Theory of Mind is a psychological term to describe the capacity to understand and successfully relate to other people by determining what they may be thinking or feeling, and their mental state, knowledge, and intentions. This includes recognising that another person’s mental state may be different from one’s own. To develop Theory of Mind abilities, it is essential to be able to accurately read nonverbal communication and social context to infer someone’s thoughts and feelings and modify social behaviour accordingly.

Many autistic adults have experienced rejection, humiliation and bullying from peers, especially in their high school years. Some of the incidents have been extremely distressing and traumatic. There is also an association between autism and all forms of abuse, which may lead to post-traumatic shock disorder.

Social expressions of autism

A common perception of an autistic person is someone who considers social interactions as indecipherably complex, overwhelming and stressful, and chooses to be alone but does not necessarily feel lonely. However, some autistic children and adults are highly motivated to socially engage but may not be able to read the subtle social signals and social conventions of what to say and do. A metaphor to describe this expression of autism is that of a driver who does not see the traffic signals (nonverbal communication) or abide by the traffic code (social conventions). Their social behaviour may be perceived as intrusive or intense, such that the autistic person becomes bitterly disappointed that conversations, friendships and relationships are short-lived.

An adaptation to autism that creates the impression of social competence is for the person to acquire social abilities by suppressing their autistic characteristics and instead observe, analyse, and imitate social behaviour, thus creating a social ‘mask’ and false persona. This adaptation may start in early childhood by avidly watching socially popular children, searching for patterns of social behaviour, and copying gestures, speech, interests, and topics of conversation. This adaptation is described as social ‘camouflaging’.

Camouflaging requires the ability to suppress typically autistic behaviours, such as gently rocking to self-soothe, or talking excessively about a special interest, and instead appear interested in other people, making appropriate empathic gestures and comments: the creation of a social mask. While social success and acceptance may be achieved this way, the psychological cost is mental exhaustion in terms of being drained of mental energy by the effort of socialising. There is also the potential for the development of depression from energy depletion and the inability to express the authentic self.

During the initial conversation with the client, there may be the expected level of reciprocity and mutual reading of nonverbal communication. However, this may be due to their being very proficient and experienced in camouflaging their autistic characteristics. These abilities may have been achieved by intellectual analysis and practice rather than intuition. If the client has autistic characteristics of difficulty coping with change, interests that are unusual in intensity or focus, and sensory sensitivity, it would be appropriate to compliment the client on their conversation and social skills, but also to ask how such social proficiency was achieved. An autistic client would describe using a range of sources of social information including observing, analysing and copying peers, watching television programmes (especially soap operas) to memorise scripts and responses, and seeking information on reading nonverbal communication and the art of conversation from literature, apps and YouTube. They may also rehearse their social and conversation scripts, or have a family member who provides social guidance.

Another social adaptation or compensation for autism during childhood is for autistic girls to prefer the company of boys since their social dynamics are relatively simpler. They may feel safer and less likely to be bullied by boys, who often enjoy playing with a ‘tomboy’. An autistic adult may compensate by choosing a career that does not require much social engagement, such as a wildlife ranger; or they may develop an interest and talent in the arts, becoming an author, artist, musician, singer, or multi-linguist. Social eccentricities may be accepted and accommodated due to being valued by peers who recognise and admire a particular talent.

Emotion communication

Autism is associated with alexithymia, that is, the inability to focus attention on, recognise and accurately appraise, describe and moderate subjective emotions and body sensations, and then communicate those thoughts, sensations and emotions in words. Alexithymia is not exclusive to autism or a characteristic of all autistic adults but has been identified in at least 50 per cent of autistic adults, and in only 5 per cent of the general population (Kinnaird, Stewart & Tchanturia, 2019). Having alexithymia leads to difficulty recognising internal emotional states, such that when asked ‘What are you feeling now?’, after some conscious thought, the reply may be, ‘I don’t know’. This is not being obtuse or evasive. There can be a genuine difficulty perceiving and converting internal states and emotions into speech. The full answer to the question would be, ‘I don’t know… how to mentally grasp the intangible emotions swirling in my mind, identify and label them accurately and communicate those feelings in speech so that you will understand’.

Another characteristic of alexithymia is to talk about experiences without reference to the emotional states of themselves and others. There is less spontaneous mention of emotions in conversation. This will affect autobiographical memory, such that an important event may be described primarily by the sequence of actions, rather than by the thoughts, feelings and intentions of others or themselves.

However, an autistic person is not oblivious to the emotional state of others and may be overly sensitive to another person’s negative mood. There appears to be a ‘sixth sense’ perception of someone’s anxiety, sadness or anger, which can lead to avoidance of some social situations or specific people due to the risk of being ‘infected’ by their distress, and being unsure how to help them.

Having difficulty identifying and communicating internal emotional states can result in emotions increasing in intensity without sufficient cognitive evaluation and regulation, eventually leading to these emotions being released explosively as a meltdown. The developmental history and current concerns may include emotional meltdowns that are explosions of anger and anxiety, or implosions of intense despair and suicidal ideation.

Cognitive abilities

Autism is a different way of perceiving and learning, and this can lead to a cognitive profile that includes an ability to perceive and develop systems and patterns, and also to identify errors and detail that may not be recognised by others. There can also be an ability to store and recall information and find solutions to problems that are elusive to colleagues or employers. This may lead to a successful career as a recognised expert in a particular career or profession.

Ability to cope with change

The diagnostic criteria refer to distress at small changes and coping with uncertainty, as well as a tendency to insist on sameness and a preference for routines and consistency. For an autistic adult, variety is not the ‘spice of life.’

Interests and talents

Throughout childhood and into the adult years there is a history of hobbies or interests that are unusual in intensity or focus. Each interest has a ‘use by date’ that may range from hours to decades. The interests are associated with intense enjoyment and may also function as a thought blocker for anxiety or sadness. They also provide a sense of identity and social connection with those who share the same interest.

During the conversation, the client may be somewhat subdued and quiet, appearing to be reluctant to engage. However, when the topic of conversation is the person’s interest, they suddenly become enlivened, engaged and eager to disclose their expertise: almost an alternative persona.

While alexithymia is a difficulty converting thoughts and feelings into speech, a successful adaption to alexithymia is to express thoughts and feelings through the arts. The autistic adult may have a recognised talent as an artist, musician, composer, or author. The inner world is vividly expressed through the arts.

There may be a talent in the caring professions, especially psychology and psychiatry. The propensity from childhood to observe and analyse others to facilitate social engagement may evolve into achieving formal qualifications and a successful career as a teacher, therapist, psychologist, paediatrician, or psychiatrist. Autism is often associated with the altruistic desire to help alleviate suffering and increase knowledge and abilities. There may also be a talent to understand and care for animals.

Sensory sensitivity

There can be an extraordinary perception of sensory experiences from the outside world, or ‘exteroception’. Specific sounds, types of lighting, tactile experiences, aromas, and emotional states of others can be perceived at such an intensity that the experience is aversive. In contrast, there can be difficulty sensing the internal world, or ‘interoception’. There appears to be a mind and body disconnection. The autistic person may not experience hunger or thirst to the same degree as other people, and may not be aware of the increased heart rate and breathing that indicate rising anxiety or anger.

Screening for autism and recommending a formal diagnostic assessment

At the end of the first consultation, or after several consultations, some, but not necessarily all of the signs of autism may gradually become apparent. The next stage is to consider asking the client to complete screening questionnaires specifically designed to identify the characteristics of autism in an adult. These include the Autism Social Quotient (Baron-Cohen et al 2001) for men and women and the GQ-ASD for women (Brown et al 2020). If their scores on these instruments are above the designated cut-off, then a referral or subsequent appointment for a formal diagnostic assessment is warranted.

Training in screening for autism and conducting a diagnostic assessment

On September 7 and 8 2022, we will be conducting a live two-day masterclass in Sydney: Diagnosis and Therapy for Autistic Adults. Day one will focus on assessing and confirming autism using a range of instruments based on research studies and our extensive clinical experience. The Masterclass will explore the characteristics of autism in adults in more detail, and review the range of screening instruments and standardised assessments or scales for autism. Day one of the Masterclass will also include guidance in conducting a diagnostic assessment, dual and differential diagnosis, and how to explain the diagnosis and its implications for the individual, their family and colleagues. Day two will focus on therapy and support for autistic adults, including modifications that help.

The Masterclass is for professionals interested in increasing their understanding of autism, and how to provide support and treatment for their autistic clients.

Professionals can choose to attend live in Sydney, Australia, or via live webcast. The recorded training will be available for participants to view for 60 days after the event. The webcast will also eventually be posted in our library of webcasts that can be accessed for several months after the original date of webcasting.

References

APA (2022) Diagnostic and Statistical Manual of Mental Disorders-5 Text Revision. American Psychiatric Association

Baron-Cohen et al (2001) Journal of Autism and Developmental Disorders 31 5-17 Available on the Internet at www.autismresearchcentre.com/research

Brown et al (2020) Autism in Adulthood 2, 216-226 Available to download at www.tonyattwood.com.au forms and questionnaires

Kinnaird, Stewart & Tchanturia (2019) European Psychiatry 55, 80-89

Lever and Geurts (2016) Journal of Autism and Developmental Disorders 46: 1916-1930