Tag Archives: autistic

Autism and Substance Addiction

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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

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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

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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

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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

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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

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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