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

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

Autism and sleep

Autism and sleep

Introduction

There is an association between autism and difficulties falling asleep, staying asleep and the quality of sleep for autistic individuals of all ages (Bishop-Fitzpatrick and Rubenstein 2019; Stewart et al 2020). A review of research on autism and sleep confirms that between 44% and 86% of autistic children and adults have sleep issues that includes a delay in falling asleep, waking multiple times and difficulty returning to sleep and less duration of sleep when compared to age peers. (Johnson and Malow 2008; Wintler et al 2020). Insomnia is considered as a comorbidity to autism but may be an integral part of autism.

Sleep profile associated with autism

The anticipated time to fall asleep (sleep onset latency) for typical adolescents and adults is less than 30 minutes but around 12 minutes longer (over 40 minutes) for autistic teenagers and adults (Jovevska et al 2020).

During childhood there can be resistance to going to bed and the development of elaborate bedtime routines to relax and facilitate sleep that can become more complex and take longer to complete (Stewart et al 2020).

Our clinical experience is that racing thoughts and ruminating can inhibit falling asleep for autistic adolescents and adults. A coping strategy is engaging in computer games and electronic media as a thought blocker for anxious or depressive thoughts. This strategy will affect sleep onset in terms of the thoughts and emotions returning when the computer game is switched off and there is the thought ‘void’ when the light is switched off.

We recognise five stages of sleep, namely Stages 1-4 and Rapid Eye Movement (REM) sleep. Research has indicated that autism is associated with less slow wave sleep, that is Stages 3 and 4 (Lambert et al 2016) and a disturbance of REM sleep. REM sleep is more prevalent at the end of the night or early morning and is a time when there are random eye movements, a propensity to dream vividly and the brain is more active than at any time during the day. During REM sleep the brain processes the cognitive and emotional experiences of the day and stores thoughts and memories. An equivalent to a computer engaging in a ‘de-frag’ process. REM sleep in a typical child comprises around 23% of sleep time but only 15% in autistic children (Buckley et al 2010). Autistic children are likely to be chronically REM deprived.

The total duration of sleep of autistic children is likely to be less than their peers by between 17 and 43 minutes each day, shortened by later bedtimes and earlier waking, and characterised by waking 3 or more times in the night (Humphreys et al 2013). The shorter duration of sleep can also reduce the amount of REM sleep (Vermeulen et al 2021). Thus, the sleep profile associated with autism includes chronic sleep deprivation.

Effects of sleep deprivation

Sleep deprivation is not always expressed as feeling lethargic or sleepy during the day. Sleep deprivation can lead to hyperactivity rather than hypoactivity (Ming et al 2009). The sleep problems of autistic children and adolescents are associated with increased physical aggression, irritability and inattention (Mazurek and Sohl 2016). When sleep improves, there is an improvement in behaviour, attention span and mood.

Mature autistic adults who have sleep issues are more likely to have fragmented sleep, and longer daytime napping and report signs of depression (Stewart et al 2020).

Insomnia may increase stress levels and the risk for suicidal thoughts and relapse of a major depressive disorder. (APA 2022).

Parents of autistic children who have sleep problems are themselves more likely to have higher levels of stress, anxiety, depression, and fatigue (Hunter et al 2020).

Causes of sleep issues associated with autism

There are many causes of sleep issues for autistic children and adults. One of the major causes is one of the diagnostic criteria for autism, a hyper-reactivity to sensory experiences. Specific sensory experiences can create a startle response and considerable discomfort or pain which inhibits falling asleep. These can be sudden ‘sharp’ noises such as the sound of a distant dog barking or a high-pitched continuous noise such as the sound of a refrigerator in the kitchen. There can be tactile sensitivity to certain bed clothes and bed linen and light sensitivity in terms of the nature and degree of illumination. There can also be a sensitivity to the bedroom temperature and internal sensory experiences such as the sounds of digestion. Unfortunately, repeated exposure strategies, such as ‘just get used to it’ are not effective in reducing an autistic person’s sensory sensitivity.

Another significant cause of sleep issues is anxiety. There is an association between autism and high levels of chronic anxiety. Our clinical experience is that autistic individuals have great difficulty acquiring the ability to relax and self-sooth, which is needed to facilitate falling asleep. The coping strategies can include creating bedtime rituals to alleviate anxiety, blocking anxious thoughts by engaging in computer games and requiring a parent to be present to sooth and encourage relaxation when falling asleep and when waking in the night.

There are also medical and psychological causes of sleep issues. Recent research has suggested that there are gene mutations associated with autism that affect the production and levels of melatonin, a natural hormone that controls sleep onset (Yan and Goldman 2020).

Insomnia is associated with prescribed medication such as stimulants to treat ADHD and SSRI medication to treat anxiety and depression can create vivid dreams which will disrupt sleep. Insomnia is also a sign of depression and there is a high association between autism and depression. Psychological causes can include nightmares and hyperarousal due to trauma.

Assessment of sleep quality and duration

The recent designs of sports watches often include the measurement of sleep quality and duration. This can provide valuable information for parents and autistic adults affirming sleep issues and provides a baseline to measure any progress in resolving sleep issues.

Greater information on sleep characteristics can be obtained from actigraphy using specialised wristwatch like devices. These are not overly expensive, and the sleep data can be valuable for sleep specialists. There are also sleep questionnaires such as the Sleep Assessment and Treatment Tool (SATT) developed and evaluated by Gregory Hanley which is freely available on the Internet.

A personal sleep assessment may be conducted at a sleep clinic with most major hospitals having a sleep clinic with a team of specialists in various aspects of sleep and mental and physical health.

Strategies to improve the depth, quality, and duration of sleep

There are a range of strategies to help autistic children and adults reduce or resolve sleep issues. These include specific medication, addressing sensory sensitivity and anxiety and sleep education programmes.

Prescribed melatonin (immediate and prolonged release) can significantly improve sleep latency and sleep quality for autistic children and adolescents (Lalanne et al 2021). A general practitioner or psychiatrist would be able to review potential medical and prescription factors that could affect sleep.

An assessment of the autistic child or adult’s sensory profile and advice from an Occupational Therapist or Clinical Psychologist may address sensory issues that affect sleep.

A Clinical Psychologist specializing in autism and anxiety will be able to provide guidance with regard to reducing overall anxiety levels and developing more appropriate and effective means of reducing anxiety before falling asleep and when waking in the night. This can provide great relief for parents.

Sleep education programmes for an autistic child can include the creation of relevant Social Stories on sleep routines and dreams (Gray 2010) and parents may benefit from parent-based sleep education programmes (Marlow et al 2014; MacDonald et al 2021; McLay et al 2021; Moss et al 2014). We now also have wise advice from autistic adolescents themselves on encouraging greater quality and duration of sleep (Pavlopoulou 2020).

Journal references

APA 2022 Diagnostic and Statistical Manual of Mental Disorders – Text Revision

Bishop-Fitzpatrick and Rubenstein 2019 Research in ASD 63

Buckley et al 2010 Archives in Pediatric Adolescent Medicine 164

Gray 2010 The New Social Story Book Future Horizons, Arlington

Humphreys et al 2013 Archives of Diseases in Childhood 99

Hunter et al 2020 Research in ASD 79

Johnson and Malow 2008 Current Treatment Options in Neurology 10

Jovevska et al 2020 Autism in Adulthood 2

Lalanne et al 2021 International Journal of Molecular Sciences 22 1490

Lambert et al 2016 Research in ASD 23

MacDonald et al 2021 Research in ASD 81

Mazurek and Sohl 2016 Journal of Autism and Developmental Disorders 46

Marlow et al 2014 Journal of Autism and developmental Disorders 44

McLay et al 2021 Journal of Autism and Developmental Disorders 51

Ming et al 2009 Clinical Medicine Insights: Pediatrics 3

Moss et al 2014 Journal of Autism and Developmental Disorders 44

Pavlopoulou 2020 Frontiers in Psychology 11 Article 583868

Stewart et al 2020 Research in ASD 77

Vermeulen et al 2021 Journal of Child Psychology and Psychiatry 62

Wintler et al 2020 Journal of Neuroscience Research. 98 1137-1149

Yan and Goldman 2020 Canadian Family Physician, 66(3), 183-185

Autism and bullying

Autism and bullying

Are the rates of bullying higher for autistic children?

Many of the autistic children and adolescents we see as clinicians have experienced frequent bullying by peers at school, and we are very concerned about the psychological consequences. Research has been conducted on the prevalence rates of bullying for autistic children and 40% experience daily bullying and a further 33% experience bullying two to three times a week (Schroeder et al 2014). This contrasts with the prevalence of being a target for bullying for typical children of only 10% (Olweus 1993).

Why are autistic children more likely to experience bullying?

In typical children, we recognise two types of targets, passive and proactive. A passive target is usually a child who is anxious, has low self-esteem, shy, engages in solitary pursuits and does not have an extensive network of friends. This could be a description of an autistic child who is an introvert. A proactive target wants to engage with peers but has poor social skills and is perceived as irritating by peers. This could be a description of an extrovert autistic child.

Other factors that may contribute to autistic children being bullied more than their peers is having low social status, such as, having few if any friends to come to their defence and not being good at character and intention judgements to identify and avoid children who engage in bullying.

Types of bullying

There are many expressions of bullying, and these include:

Verbal such as obscenities and sarcasm

Physical with actions that cause pain and discomfort

Emotional and psychological such as gossip, rumours, and derogatory comments, for example, “you’re so ugly/stupid or a loser” The term autistic can also be used as a derogatory comment

Practical jokes and humiliation

Sexual with inappropriate touching, gestures, and actions

Being set up and unaware of the implications of complying with the instructions

Cyberbullying

An example of cyberbullying and its consequences are illustrated in the following quotation.

My cyberbullies were relentless and would never leave me alone. I wanted to kill myself because I felt there was no way to get away from them, but I was scared I’d fail because I was such a pathetic loser. I never felt safe anywhere. So, I would cut myself in places that no one could see. The physical pain never matched the emotional pain I felt with what the bullies would say to me. (McKibbin 2016, page 61)

Where does bullying occur?

Those who engage in bullying do not want to be caught and reprimanded by a teacher, so most acts of bullying occur at locations where the incident is less likely to be detected. Bullying is most likely when there is no adult supervision such as hallways and on school transport and can also occur close to or in the home by children of neighbours, family friends and relatives. However, bullying attempts occur most frequently at school. Most bullying actions are covert with only 15% observed in the classroom by a teacher, and only 5% in the playground (Olweus 1993; Rigby 1996).

The autistic child’s signs of being bullied

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

The psychological effects of being bullied

Being bullied increases signs of anxiety, suicidal ideation, self-harm and depression (Ung et al 2016), as illustrated in this quotation:

Bullying for me was at its worst in secondary school. My bullies were merciless- they would make fun of me and tease me in the classroom- even in front of the teachers. And when I would look to the ‘trusted adult’ in the room for help, begging them to make it stop, I found them laughing with my bullies- making it worse and making my days even more intolerable. I tried to kill myself when I was 14 years old and ended up in hospital. It was only then that my parents finally agreed to let me do home-school. To this day, I swear it saved my life. (McKibbin 2016 page 67.)

The derogatory comments of those who engage in bullying create within an autistic child, a deepening negative self-belief due to being relentless and not contradicted by friends. The self-belief is that I am stupid, or psycho, or that no one will ever be my friend. Rates of anxiety and depression are lower in autistic children who are not the target of bullying (Schroeder et al 2014) and experiences of being bullied may need to be addressed in psychological treatment of anxiety and depression.

The autistic child may not understand why they are the target of bullying and why someone would intentionally cause distress. They subsequently ruminate on the acts of bullying, replaying the events in their mind, and especially when falling asleep, to try to determine the motivations of the person who engages in bullying and cannot forgive or forget until they have closure by understanding why and they are not at fault.

School can become a ‘war zone’ and incidents of bullying can lead to signs of Post-Traumatic Stress Disorder (PTSD). Bullying can also contribute to camouflaging autistic traits (Cage and Troxell-Whitman 2019) as in the following quotation from the research study with a participant explaining why she camouflaged her autism: To stop bullying and mocking as I’ve experienced when not masking.

Being bullied is also a contributory factor for developing an eating disorder (Brede et al 2020). The research found that autistic and typical adolescents that developed an eating disorder often talked about difficulties in friendship and experiencing loneliness, bullying and abuse which affected their eating.

Autistic children’s response to bullying

They may have a limited repertoire of responses to acts of bullying, with a propensity to respond with aggression and violence earlier than typical peers. If their experiences are not taken seriously, they make ‘take the law into their own hands’ which could lead to tragic consequences.

Strategies to decrease the frequency and type of bullying

There needs to be a whole school approach that includes the target, school administration, teachers, professionals, parents, other children, and the child who engages in bullying. This strategy will require an agreed code of conduct, staff education and consistency and the concept of justice and appropriate consequences based on the degree of responsibility. The following are brief explanations of ten strategies for autistic children.

The changes here are more about everyone changing, rather than the autistic child having to do all the work:

1: Create a map of safe and accessible places where the likelihood of being bullied is reduced and highlight vulnerable places, such as locations away from adult supervision.

2: Educate and inform students on the life-long consequences of someone who is the victim of bullying, but also who engages in bullying,  to ‘rescue’ both parties. Bystanders need to be assertive and intervene when acts of bullying occur.

3: Avoid vulnerable situations such as trying to hide in the toilets

4: Security is in numbers. That is being near other children or adults.

5: Prepare the child with an appropriate response which has been created together with adults and peers which has been rehearsed.

6: The autistic child will need an explanation why they were the target, but also the psychology of those who engage in acts of bullying.

7: Ensure that ALL students understand the consequences according to the relevant school rules and based on equitable social justice.

8: Support and provide guidance for all students in determining the difference between friendly and not friendly teasing.

9: Understanding the value of disclosure and who to disclose to and how.

10: Access literature and resources on bullying and autism such as No Fishing Allowed: Reel in Bullying by Carol Gray and Judy Williams and the books on bullying such as those published by Jessica Kingsley publishers www.jkp.com

Parents may consider how to communicate their concern with the school, recording incidents of bullying and the informing the school and psychologists of the child’s ability to cope with bullying and effect on mental health. They may also consider enrolling the child in a martial arts class, could you add something here about why you this could be beneficial, such as, increase self-confidence, rather than others implying that violence is the solution.  and changing school which may or may not contribute to reducing the frequency of bullying. Another option considered by parents and the child is home schooling.

References

Cage and Troxell-Whitman (2019) Journal of Autism and developmental Disorders 49, 1899-1911.

Gray, C. and Williams J. (2006) No Fishing Allowed: Reel in Bullying Arlington, Future Horizons

McKibben K. (2016) Life on the Autism Spectrum: A Guide for Girls and Women. Jessica Kingsley Publishers

Olweus, D. (1993) Bullying at school, Cambridge: Blackwell

Rigby, K. (1996) Bullying in schools. London, Jessica Kingsley Publishers

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

Ung et al (2016) Research in ASD 32, 70-79

10 Challenges your autistic teenager likely faces every day

10 Challenges your autistic teenager likely faces every day

Introduction

If you live with, teach or work with an autistic teenager, it is very likely that you have noticed that many days seem to be characterised by struggle. They often experience very strong emotions, including anxiety, stress, depression, and anger. On some days even the smallest trigger, for example, looking at the person, can trigger a meltdown. They come home from school catastrophically tired, seeming to need hours in the bedroom lying on the bed to recover, or disappearing into a computer monitor, only to emerge in a worse mood than they went in with. What is going on? Why are our autistic teenagers struggling so much with life? In this blog we cover 10 likely challenges your autistic teenager faces every day, with a hope to increase your understanding of why your teenager is struggling so much. We find that when we can understand the reasons for the struggle, that understanding can provide a roadmap of how to better assist our teenagers.

1. Being different

An autistic person often experiences that they are different from other people from an early age, but commonly does not understand why they are different. Within this gap of understanding they can insert many self-derogatory labels, like “weird,” “psycho,” or “stupid.” It is very difficult to be different at school, especially socially. You will remember from your own experiences of high school just how critical, rejecting and punishing teenagers can be to each other. One of the developmental milestones of adolescence is to individuate, that is to become an individual separate from your parents, to gain a sense of self. The individuation process is often characterised by trying to fit in with peers. It is very difficult to fit in with peers when you are socially different. The other kids know you are different, you know it, but you have no idea what to do about it. The result can be very low self-esteem, a poor sense of self and a sense of hopelessness, leading to depression and suicidality. Some teenagers react by denying that there is a problem, and overcompensate with an inflated self-esteem, or arrogance, and blame others. They often have anger problems.

2. Self-regulation

Autism is a frontal lobe condition, which means that it affects the frontal lobes of the brain, which are responsible for executive functioning. In fact 3/4 of people with autism also have attention deficit hyperactivity disorder (ADHD), a condition characterised by poor executive functioning. Executive functioning abilities include the capacity to focus on the right thing at the right time, transition between events, organise ourselves and our time, plan and prioritise, hold a problem in our mind while we are solving it, and to inhibit first responses. An autistic teenager is often struggling with each of these abilities, which truly impairs their ability to regulate their emotions and behaviour. They often ricochet between emotions, acting impulsively, becoming defensive, and avoiding situations that make them anxious. This pattern allows no space to sense themselves, to process what is happening, to learn, or to problem solve. Without self-regulation, your teenagers feels out of control, and increasingly anxious. When someone cannot control themselves, they usually start to try to control other people.

3. Sensory challenges

One of the defining features of being autistic is that there are sensory challenges. Often noises are too loud, light is too bright, and the person can be very distressed by certain aromas, textures and tastes. Having a different sensory system can also affect the person’s ability to register pain and temperature. The consequences of a different sensory system include persistent hypervigilance, exhaustion and sleep problems. There can be difficulty with concentration and focus during the day because of the background stress of trying to process sensory experiences.

4. People

If you ask an autistic teenager what is the biggest problem of their life, they often will tell you that it is people. What they mean is that people are confusing, it is difficult to read them and to know what they expect, and they can also be punishing and rejecting. Research tells us that over 90% of autistic teenagers will have received cruel bullying, including peer rejection, by the time they reach 14 years old. Often our autistic teenagers decide quite early that people are “toxic,” and they prefer to avoid them to stay safe. The problem with this is that they have overlearned the lesson. Not all people are toxic, and your autistic teenager needs people in their life, including friends, mentors, parents, siblings, professionals and teachers. As one autistic teenager said, “I would choose to be alone but I can’t stand the loneliness.” We know from research and clinical practice that having just one friend can protect an autistic teenager from poor mental health outcomes.

5. Double empathy problem

Autistic people struggle to read other people, to infer their expectations and intentions. This problem is called “theory of mind,” or cognitive empathy. It is important to point out that autistic people do not lack empathy, they usually have an abundance of affective empathy, as discussed below. However, they do struggle to “read” people, to have cognitive empathy. We now understand that the problem goes both ways. As much as autistic people struggle to read neurotypical people, neurotypical people struggle to read autistic people. The unique social communication style of an autistic person, which may include less eye contact, facial expressions and body gesture, can lead that person to be misinterpreted and even perceived unfavourably. Similarly, an autistic person can misperceive certain facial expressions, gestures and tones of voice as being negative, and thus perceive the person unfavourably. On each side, whenever an unfavourable impression is made, the person perceiving the unfavourable impression is less welcoming, leading to the autistic person to both reject other people and perceive that they themselves are not welcome (Mitchell, Sheppard & Cassidy, 2021).

6. Overthinking

Due to problems with both social confusion and executive functioning, the person tends to overthink many situations as a coping mechanism. Autistic people often highly value intellect and can utilise their intellect to overcome their problems. This is a very valuable skill, but when overused we call it overthinking. Overthinking one’s problems can lead to both exhaustion and “analysis paralysis,” where the person becomes overwhelmed and avoids the problem. You know your teenager is avoiding the problem when they spend a lot of time in bed or in front of a screen. This avoidance is called thought blocking and leads to much greater levels of distress. Overthinking is also associated with being disconnected from the body and hence from processing one’s emotions. We need to feel to heal.

7. Empathy overarousal

We have talked about cognitive empathy and we mentioned affective empathy. Affective empathy is when the person feels other’s emotional distress as if it were their own. They may not be able to understand how to describe that distress, or why the distress is occurring, but they feel it as if it were their own. Research has shown that many autistic people experience other peoples’ pain more intensively than neurotypical people do. This has been called the “empathy over arousal hypothesis.” Autistic teenagers and adults describe that they often feel overwhelmed by other peoples’ emotional pain, and have no idea how to deal with it, either how to help themselves, or how to help the other person.

8. Alexithymia

Up to 80% of autistic people also have alexithymia. Alexithymia literally interprets to “a” – a lack of, “lexi” – words for “thymia” – emotions. It also includes difficulty sensing bodily sensations associated with emotions, or problems with interoception. When someone cannot detect the early signs of an emotion, or find and words for that emotion, they are severely under equipped for managing the emotion. Alexithymia is one of the reasons many autistic teenagers rise from 0 to 100 in half a second on their Anger Thermometer. Unfortunately, having alexithymia is a risk factor for developing clinical levels of anxiety and depression.

9. A different learning profile

When an autistic person completes an Intelligence Quotient (IQ) test it is very common for them to show a great deal of variability between the various subtests that make up the IQ test. This means that they often have great strengths in their cognitive learning ability, but also areas of great difficulty. Because of their uneven learning profile they can really struggle with new learning tasks, even if they are very intelligent or even gifted. We call this the different learning profile of autism. Being a different learner can be very challenging in all contexts, including school, but also in social situations and within the family and community. Despite good intellect, your autistic teenager may feel that they are stupid, and can feel very depressed and hopeless about that.

10. Trauma or the effects of past trauma

It is unfortunately the case that autistic people are both more likely to experience a traumatic event and are more likely to have a traumatic stress reaction, for example, to develop PTSD, after trauma. It may be that your autistic teenager is suffering current trauma, for example, being bullied or abused, or has developed PTSD, but the condition is undiagnosed. A person with PTSD will experience high levels of hypervigilance throughout the day, distrust of people, flashbacks to the traumatic event, and nightmares that interrupt good quality sleep. If you suspect that your autistic teenager has developed PTSD or is suffering a current trauma, we highly recommend seeking professional assistance for them immediately. Fortunately, PTSD is treatable, and if we know about ongoing traumatic experiences, we can keep our autistic teenagers safe by stopping them.
Summary

The teenage years are challenging for typical teenagers, however our autistic teenagers face unique challenges that can amplify the typical challenges of the teenage years. Over the many years we have specialised in autism, we have discovered that understanding specific challenges that our autistic teenagers face is the most important first step in knowing how to support and assist our teenagers. The 10 challenges we list in this blog are ones that we commonly discover in our clinical practice, and have further understood with research and clinical practice. Hopefully your autistic teenager is not experiencing all of these challenges, but we encourage you to continue to explore and understand the challenges they face. It can be painful to tune in and listen, or to lean in and observe closely. We ourselves may have faced similar issues and have not yet healed. However, one of the most consistent findings across research on what helps to maximise the best outcomes in autism is support. When we provide ongoing support and understanding for our autistic teenagers, we give them the best opportunity to succeed.
What Next?

If your autistic teenager, student or client is experiencing any of these challenges and you are uncertain about next steps, we encourage you to come to our next Succeeding with Autism in The Teens Live Webcast on Friday 22nd July, 2022.

More information is available on our website:

https://attwoodandgarnettevents.com/product/succeeding-with-autism-in-the-teens/

References

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

Autism working

Autism working

Introduction

Achieving and maintaining employment can be difficult and stressful for autistic adults. Parents and partners also have their concerns, as they often provide employment support and employers, line managers and co-workers need guidance in how to work successfully with an autistic employee.

Unfortunately, many autistic adults who have a job are under-employed, that is, their job does not match their abilities, qualifications, and aspirations or their duration of employment is less than anticipated. This is despite autism being associated with qualities that are sought by employers such as:


ReliabilityAccuracy and precision
PersistenceAttention to detail and a perfectionist
Liking routines and proceduresCreativity and innovative thinking
Problem solvingFactual and technical knowledge
Sense of social justice and compassionNot letting socializing be a distraction
Talent in identifying patterns and systemsIdentifying and correcting errors
Enjoy cataloguing and recalling informationHonest and loyal
Working logically and systematicallyPassion for their chosen career

Having a successful career will significantly improve self-worth and self-identity, provide structure and purpose to the day, an opportunity to make friends, increase income and greater financial independence, and be an effective antidote to low self-esteem and depression.

Career choice

From our extensive clinical experience, we consider that no job or career would automatically be viewed as impossible due to autism. This can include the expected careers in engineering, information technology, science and accountancy but also a career in the arts in terms of being a fine artist, musician, actor or author. We have also known autistic adults who have been successful in the caring professions, from nursing to psychology and caring for animals such as being a vet or zookeeper. There is no automatic restriction on choice of career.

How to choose that career? The first option may be to see if there are employment prospects related to a special interest or talent that is associated with the person’s profile of autism and personality. A childhood talent with LEGO® that develops during adolescence into an intense interest in the design of machines could become the basis of a successful career in mechanical engineering. A determination to understand people may develop into a career in psychology and the caring profession, and a difficulty expressing inner thoughts and feelings using speech may lead to a talent in self-expression and perception in the arts.

We highly recommend that autistic adolescents have a detailed assessment of vocational abilities during the high school years to identify whether a talent or interest could be the foundation of a potential career. There will also need to be an assessment of vocational abilities that need improvement, such as teamwork abilities and coping with changes in job expectations. This information is then included in the high school curriculum. Autistic adults will need similar assessments, careers guidance and improvement of employment skills which could be provided by an employment agency.

When there is a history of failed employment experiences, this can provide valuable information on what skills or employment accommodations are needed and which jobs or workplaces to avoid. It may take several employment experiences before finding the right job with the right employer.

When searching for a job that matches abilities, interests, qualifications, and personality, it is important to find as much information as possible about the social and sensory aspects of the job. This can include personal space such as an open plan or single person office space, working independently or in a team, and sensory aspects such as sounds, lighting, clothing, and scents. It is also important to consider the understanding of autism of the line manager and colleagues and their willingness to learn about autism. Autistic people can sometimes have a ‘sixth sense’ to quickly appraise the social atmosphere of a new situation, and a positive or negative attitude can become apparent on meeting the staff prior to or during the interview. We recommend trusting that intuition.

Job interview

There will probably be a need for guidance in completing the job application form and, deciding whether to disclose the diagnosis. There are no clear rules on disclosure when applying for a job, and it is sometimes a personal decision based on whether disclosure would facilitate or inhibit achieving an interview or being employed. It is also important to decide what to wear for the interview and to rehearse how to answer the anticipated questions during the interview. If autism has been disclosed in the application, it may be an advantage to prepare a brief brochure on autism and associated qualities in relation to the position. The brochure can be attached to the application or given to those conducting the interview.

A job interview is a complex social ordeal. There is an expectation of accurately reading the body language of those conducting the interview, and succinctly and honestly answering their questions. An autistic candidate may have difficulty knowing the non-verbal signals and social conventions in an interview. We highly recommend practice and rehearsal in interviewing techniques and having an informative portfolio of relevant work experience that can be the focus of the interview. If those conducting the interview know that the person has autism, it will help to describe some of the difficulties associated with autism, but that these are significantly less than the qualities required for the position, and that there are strategies to facilitate successful employment.

Starting the job

There are potential employment issues associated with autism that will probably become apparent when starting a new job. These include the social aspects of the work, executive functioning abilities, sensory sensitivity, changes to job expectations and stress management. We have described these issues in some detail and provide strategies to overcome them in our recent publication Autism Working (Garnett and Attwood 2021) These are some of the issues and strategies.

Social aspects

The characteristics of autism include difficulty achieving social and conversational reciprocity, reading non-verbal communication, understanding different perspectives, developing teamwork skills, and following conversational rules. Workplace social communication challenges can also include discussing confidential and personal topics at work and respecting co-worker/employee boundaries. There can be difficulties knowing the social expectations and engagement in social events such as a celebration party and a vulnerability to being bullied and teased.

Strategies to reduce social communication difficulties include having a work mentor to explain the workplace social dynamics and protocols and developing social scripts to explain autism and seek support. Examples include how to communicate a preference for solitude during breaks, end a social conversation and return to work and reading the signals when a colleague or line manager does not want to be interrupted.

Executive functioning

This can include a propensity to be distracted by detail, organizational and planning difficulties, time management, prioritizing, and self-monitoring. We have also noted difficulties regarding unorthodox work routines and coping with errors, both personal and colleague’s errors. The autistic employee may need more supervision and guidance regarding executive functioning abilities than other employees. It is important that the line manager discuss strategies to minimize such difficulties and to have regularly schedules meetings to provide feedback on performance, workplace accommodations and areas for personal improvement.

Sensory sensitivity

The most common sensory sensitivity associated with autism is to specific sounds, but there can also be sensitivity to tactile experiences, light intensity, and aromas. Autistic adults often describe some sensory experiences as painful; the anticipation of such experiences creates anxiety and becoming hypervigilant. There is also the potential for sensory overload which is extremely distressing.

Coping mechanisms include explaining the sensory sensitivity to colleagues and line manager and requesting accommodations such as working some distance from the sound of the hand dryer or fridge and if possible, having natural rather than fluorescent lighting.

Changes to job expectations

A characteristic of autism is a difficulty coping with change and the unexpected. It is inevitable that there will be changes in the work environment, but it is important that the autistic person is given as much warning as possible and provided with an explanation of why there is a change of plan and expectations. This will enable the autistic person to create a new mind set.

It is also important to be aware that while promotion is considered a reward for the quality of work, there can be difficulties if the new role requires greater social and teamwork skills. It is important to consider social communication challenges in career and promotion planning.

Stress management

When work demands exceed an autistic individual’s resources and abilities, stress is the inevitable result. It is important that the autistic employee knows their personal signs of work-related stress, which work situations create significant stress, and that stress levels are communicated to the line manager.

High levels of stress will affect work performance and could lead the autistic person to resign. There may be strategies to reduce stress at work such as having a quiet retreat area to reduce stress and restore energy, using relaxation strategies and an opportunity to de-brief at work or home.

In summary

Autistic adults often have difficulties getting and keeping a job, despite having many qualities that employers seek. We need to assess an autistic person’s employment attributes and challenges, enhance their employment qualities, and address their employment issues. We also need to educate the workforce in how to accommodate and benefit from an autistic employee or colleague.

Employment resources for autism

We have applied our extensive experience of autistic adults to create a seven stage plan to facilitate successful employment in our new book Autism Working and with our colleague Barb Cook, created a presentation on autism and employment to be webcast on the 4th of March with more information at www.attwoodandgarnettevents.com This webcast will be of great interest to:

Employers

HR Managers

Line Managers

Team Members

Mentors and employment agency staff

Autistic employees, and

Autistic adults looking for and maintaining employment.

Parents and carers of autistic adults

Reference

Garnett M. and Attwood T. (2021) Autism Working: A Seven-Stage plan to Thriving at Work Jessica Kingsley Publishers, London.

Computer gaming and COVID

Computer gaming and COVID

The following article is Tony’s chapter from the new book:
Life After Lockdown: Resetting Perceptions of Autism Strategies and Reflections

Edited by Rebecca Silva, Ruth Prystash, Rene DeLoss, and Carol Burmeister (Foreword by Peter Vermeulen)

Available to purchase here

The past year has marked us as one of the only generations to experience a global pandemic. The pandemic kept people at home, something that suited many autistic individuals. But it also limited the opportunities for social and emotional growth for autistic teens and young adults, and one of the obvious outlets became computer games. These games were already intensely important to many autistic youth, but now they became more so, as there was little else to occupy their minds and their time. Computer games can be beneficial, but they can also be addictive. This is a story that needs to be told, because nobody else is talking about it.

COVID’s impact on the autistic teen or young adult

Many individuals have begun displaying an increase in routines and rituals, heightened sensory sensitivity, and more engagement with special interests. These are all ways of coping with anxiety. People have been cooped up together for the past year, which can be difficult for a person with autism who craves solitude. There may even be anxiety about what will happen when we begin to have more face-to-face contact and are forced to endure crowds again.

There is a misconception that people with autism lack empathy. The opposite is actually true: Autistic individuals are often acutely aware of other people’s mental states. The news speaks of a killer virus and the rising numbers of dead; children worry about their family members’ health. There has been more free time at home this year for the anxiety to percolate and one way to alleviate that anxiety is the computer game.

Computer gaming—a perfect fit for autism

There are a number of factors that make computer games extremely popular with people on the spectrum. Gaming provides a sense of achievement and identity. It allows you to show your capabilities independent of autism. The main issues of autism are social-conversational, but in gaming you have no real socialization and you have no conversation, so you have basically bypassed autism. Gaming is a natural talent because it suits the autistic cognition. However, it also involves considerable practice. A person can become a master of a skill that requires great ability but also practice. It is the same for a child with computer games. They are talented at computer games, and are motivated to practice. If you want to measure the intelligence of an autistic child, watch them play computer games. The game bypasses their autism, they are highly motivated, and you can see how quickly and effectively their brain works.

If you are not good socially and you are not good at sports, your intellect is very important to you, and you want to prove how smart you are. You want to demonstrate your intelligence and you want other people to appreciate that intelligence. With gaming you have a sense of achievement that is truly gratifying, especially as it is valuable to your peer group.

Autistic teens are searching for identity. Who am I? Why am I here? What is the meaning of life? Where do I fit in? I know I’m supposed to be like everyone else, but I’m not. I want a sense of identity and self-worth that is defined by something that is valued by my peers. The computer game does that. It gives a sense of identity to someone who is searching. The computer game becomes a way of fitting in. It becomes your identity when you have few ways to define that identity. And autism can make a person very lonely. Without social skills, it is sometimes hard to fit in to most same-age groups. Bullying and being excluded can leave autistic teens feeling isolated, while gaming provides a connection with fellow gamers who actually seek you out, rather than shun you.

Computer games give you immediate feedback. As many as 75% of those with ASD also display characteristics of ADD and ADHD. Computer gaming suits those characteristics, as it is based on immediate feedback on one’s performance without any waiting, which autistic people often dislike. Unlike school, where you may be waiting on feedback from a teacher, the game provides immediate feedback.

People are excited to see you online and that kind of genuine, deep welcome is intoxicating to someone with autism. Someone in your peer group actually wants to know you, and is pleased that you are there. Rather than the students who sometimes bully and tease and reject and humiliate, these gamers want to know you and are proud to be your friend. They give you compliments and admiration. But more than that, with your gaming skills, you also become a teacher to some, a mentor to others. You advise them. You are wise. You are talented. You are someone special.

In e-sports, a subgroup of gaming, there are leagues with teams and supporters; logos and colors; managers and favorite players. Players are bought and sold. There are e-sport competitions held in convention centers with thousands of people watching gamers. And in this world, you, the autistic individual, are the person the team wants to recruit. You are a hero in that world. Finally, you have a social network where you shine.  

Gaming as a coping mechanism

During COVID, anxiety and depression increased for many people, including people on the spectrum. A computer game is a thought blocker for anxiety and depression. When you are engaged in the game, you don’t feel anxious and you don’t feel depressed. Instead, you suppress and compress your thoughts and feelings. Computer games are more powerful than medications or cognitive behavioral therapy because they encourage the classic autistic characteristics of avoidance and suppression. When you are playing the game, you are in a bubble. Your problems disappear and you don’t care about anything else, but when you switch off the game, those feelings come back. Parents become frightened to see how angry their child becomes when asked to turn off the computer. What is actually happening isn’t really anger: It is the fact that their powerful feelings have not been dissolved or resolved. Once the game is gone—boom! The feelings are back, and they flood you with fear and despair.

A substitute for social interaction

In autism social emotional reciprocity is a core issue. In a computer game, you don’t have a real conversation going on. You don’t have to worry about reciprocity, you don’t have to read body language, and you don’t have to be involved in social chit-chat. One of the interesting things is that there are often chat lines in computer games, and they provide a means to communicate through typing, rather than talking. Clinically, that can be very valuable. When a client sends me an email, I may receive far more information and insight into the individual’s world than I do in person, because it involves typing, not talking. There is a greater fluency and disclosure of thoughts, feelings, and revelations of the self through typing, rather than talking.

The games have very clear and simple rules that aren’t like social rules. Social rules are inconsistent and complex, and there are always exceptions. Neurotypical kids do things that that are against the rules and get away with it, even though you’re not supposed to get away with it! But in gaming, there are simple rules that are always enforced. There is no inconsistency and no uncertainty, so you are secure in the rules of the game.

A sense of pleasure and enjoyment

If you ask a neurotypical about the greatest moments of excitement and joy in their life, it usually involves another person–giving birth, getting married, falling in love. But with autism, other people can be a source of confusion, so pleasurable memories rarely involve them. Computer gaming, on the other hand, gives you experiences of pleasure and enjoyment when there are very few in your life. This is incredibly intoxicating. Gaming is addictive because it feeds into pleasure-seeking and enjoyment. For someone who may have few pleasures in life, experiencing such a high level of excitement—perhaps the greatest enjoyment you have ever received—is euphoric.

Creating an alternative world

In the real world of daily life, the teen with autism is often not respected or included. But here in the computer game, you are in a world where you are both respected and included. The special interests of people on the spectrum are often an attempt to find a world in which to belong. Anime, Pokemon, Manga–another culture, another country, another time in history where you fit in. Science fiction–you go to another planet where you are recognized and valued. The game creates an alternative world where you have a sense of belonging. The real world may not value you or respect you, but in this world you are remarkable, and that’s why you want to stay.

Avatars are virtual selves that you can create in a computer game. An avatar allows you to experiment with personality, analyzing the interests and people who are important in your life. This is what most teenagers do in the real world. I’m going to be an adult, so what kind of adult am I going to be?  Who do I value, who are my heroes, and can I borrow some of their characteristics? In a computer game you can experiment with that even further. If you’re concerned about your weight, your avatar is slim; if you’re concerned that you’re not smart enough, then your avatar is a genius. It is very powerful.

The dangers of computer gaming

Immersion into computer gaming can mean that individuals are not learning to cope with emotions. Instead, they’re learning to avoid them. They are compressing and suppressing, and are not processing their feelings appropriately. This means that when they start playing the games in earnest, their emotional maturity freezes and levels off. Emotional regulation is stunted. Individuals learn to rely on the game rather than the actual social skills which will serve them in the real world.

When we look at the long term effects of gaming, we see medical issues. Individuals become overweight, with poor eating habits. Junk food is quick and easy while you are on the computer. Some individuals will spend enormous amounts of time online—from 10- 16 hours per day. There is a lack of exercise and exposure to sunlight, so health effects arise.

It is also very disruptive to sleep patterns. One of the effects of extended screen time is that a person’s thoughts increasingly spiral once the game is turned off. Thoughts become incoherent and chaotic, and sleep becomes more and more elusive. That’s why there should be no screen time for one to two hours before bed. In autism, sleep is always been a problem, from infancy on through senior adulthood. Sleep is important for processing intellectual information and processing emotions. When you have a good night’s sleep, inappropriate behaviors diminish. With too little sleep, the opposite is true.

One of the inherent dangers in gaming is a potential tie-in to gambling. In computer games there are commodities called loot boxes. These loot boxes pop up during a game, offering the opportunity to purchase something that may or may not contain useful items. Most boxes have ordinary items, but the gamer will continue to buy them, lured by the possibility of scoring something big. The odds of it having what it advertises are very rare, but the possibility keeps gamers buying more, and so gambling becomes embedded in games. Parents should be aware of this connection, as it is one more avenue to addiction.

When gaming becomes an addiction

The computer gaming industry has the potential to rob us of some very bright minds, who may get caught up in the addictive side of gaming. When teens begin to avoid things that were recently part of their routine, there may be a problem. If you tell your teen to get off the computer for lunch and they become incredibly agitated, avoiding lunch in order to play the game—that’s a worry. If they become upset when a legitimate request interferes with access to the game, then the depth of engagement is now of considerable clinical concern. Their world revolves around the number of hours they spend on the game, and they become agitated when other activities interfere. For example, you used to have evening meals as a family, spending time together. Now the teen arrives at the table at the last moment, bolts down food, and then, boom. Gone. No conversation. No engagement. The individual withdraws from a variety of activities that used to be important for the family and enjoyable for themselves. The game is taking control. This is common in addiction: instead of the person controlling the game, the game is controlling the person.

One of the first casualties of any addiction is truth. The individual will hide their actual time online, like an alcoholic hides their alcohol. They will also have access to games on their phones. Gaming should absolutely be included in the same category as alcohol and drugs for individuals with autism. These individuals struggle, not with autism, but with emotional regulation. Because the game is so good at moderating intense emotions, they are reluctant to switch to anything else.

Dealing with the addiction

One thing that parents should not do is take away the game as punishment. The games provide the teen or young adult with an identity, coping strategies, a social network—what they live for. If adults remove this without providing the child with other coping mechanisms or alternative activities, this ends up being, not punishment but revenge. Parents will end up escalating the punishment from a day to a week to the threat of totally removing the computer, and the teen will respond with defiance and anger. It can quickly escalate into a civil war which no one wins.

If we want to address the behavior constructively, it is important to carefully identify the issues of behavior management or encouragement of chores or other commitments. There must absolutely be consequences, but they must be appropriate. For example, if a teen does something that upsets his sister, an appropriate response might be to have him take responsibility for one of her chores for a week. The time that is spent on that chore would have been spent on the computer, so it is a means of restricting access through teaching an appropriate replacement. It is possible to use the computer as a reward. For example, if the child does their homework, they can have an extra half hour on the computer. This uses the computer as a reward or an encouragement, rather than as punishment. It also teaches a part of growing up. You want more time on the game, but you’ve got to do your chores. That’s life.

When a parent suspects addiction, they can use logic to deal with it. Get a big piece of paper and list the positives and negatives of computer games with the individual. The positives are that it helps manage emotions and it makes the child popular. So how can we help the individual achieve these things outside the game? We can find more conventional and diverse ways of achieving those things, initially in addition to the computer game and eventually as alternatives. Next list the negatives: being overweight, spending huge amounts of time on the game and nothing else, the lack of honesty, and the lack of constructive ways in their lives to learn to deal with emotions. Help the individual compare these lists and set goals.

In terms of strategy, first get an accurate accounting of the amount of time spent gaming. Instead of aiming for an unrealistic goal, like an entire game-free day, try for something more reasonable. For example, start with reducing time by 15 minutes every day for three weeks. If successful, then decrease by 15 more minutes for three more weeks. Use small steps. Parents must provide alternatives that bring pleasure to the child, like being outdoors or spending time with pets. Families must also try to help the individual increase their social network through constructive means so the individual is actually learning to relate and manage conflict.

There are currently few treatment options for addiction in autistic individuals. Therapy for addiction needs to develop expertise, theoretical models, and a whole range of strategies for gaming addiction, especially for autistic individuals. We need psychiatrists and psychologists who are aware of this and work to modify therapy to accommodate the autistic way of thinking.

Final thoughts

As we continue to deal with the effects of the current pandemic, it’s important to realize that many of our brightest autistic individuals are going into the medical and research fields. These individuals, with their logical brains and skill at analyzing systems, have the ability to understand the behavior of a virus and can use their intellect to help develop cures. The intense focus of which they are capable allows them to tolerate 18-hour days in a lab. Instead of looking at a computer screen, they are looking into a microscope. Let’s hope that we can guide them to those labs, and show them that their brilliance is not only appreciated, but desperately needed, and that they are indeed invaluable members of society.