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Ageing and autism

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Ageing and autism

Over the last decade, we have seen an increasing number of mature adults seeking confirmation of autism in their developmental history and profile of abilities. This has provided an opportunity to explore ageing and autism using a cross-sectional approach, that is the expression of autism within specific decades and a longitudinal approach by regularly seeing some autistic adults over several decades. Research has also recently been conducted on ageing and autism using semi-structured interviews. A study by Wake, Endlich and Lagos (2021) included 150 research participants with an age range from 50 to 80 years. Tony has been an associate advisor to a PhD study that used a detailed analysis of ten autistic adults aged from 53 to 74 years (Ommensen et al). In this blog, we examine autism and ageing based on both research and our extensive clinical experience.

Autistic adults over the age of 50, colloquially known as the Baby Boomers, were unable to benefit during their childhood and adolescence from our current range of support programmes at school and home that improve social understanding and friendships skills, as well as develop a positive sense of self.  They have also not had access in their early adult years to therapy specifically designed to reduce feelings of anxiety and depression in autistic adults and they missed out on the environmental and attitude adaptations that we now have to support autistic adults at work. It is interesting that despite a lack of understanding and support throughout their life, some mature autistic adults have achieved a successful and enjoyable quality of life and well-being that will be valuable information for those designing interventions and support for future generations.

Recognition of autism late in life

Our clinical experience is that recognition of autism later in life is a positive experience, with research confirming that nearly 80% of participants feel a sense of relief and being liberated, as illustrated in the following quotations from Wake, Endlich and Lagos (2021) study.

“I felt I didn’t have to blame myself any more for being me … at least not so much.”

“It was so nice to have a name for it!  And it allowed me to join a support group and start learning more about myself, as well as being clearer about which aspects of being on the spectrum I could work on and which I would just have to live with.”

Most research participants in the study felt relieved and better about themselves following confirmation of being autistic but upset that they had lived such a great part of their lives without knowing. The overwhelming majority recognized they were different to their peers during early childhood (95%) but without knowing why. They were often intellectually able students but had miserable experiences at school. It seems that the greatest distress came from not just being different, but from not having words or concepts to express their autism or someone to confirm the pattern of autistic characteristics. All research participants regretted not having their autism confirmed earlier in life.

After the recognition of autism in their mature years, there were changes in terms of feeling better about themselves (67%) and making sense of who they are. There was a reduction in self-blame, restructuring their lives based on strengths and abilities and finding support communities. There was also less inclined to engage in camouflaging autism (Bradley et al 2021).  There were also beneficial effects on mental health as expressed by one research participant who said:

“My depression lifted without medication”.

Coping reactions over time

Attwood (2007) described two internalizing and two externalizing reactions to autism that can be recognised in childhood that can extend into the adult years. The two internalizing reactions can be depression and escape into imagination or academics. The two externalizing reactions are denial of being different and suppressing autistic characteristics and creating a social mask (camouflaging). Wake, Endlich and Lagos (2021) found that these coping strategies were more common in adolescence and early adulthood, but gradually reduced in midlife. This was probably due to using other coping strategies such as self-acceptance and a positive perception of autism. There were also improvements in understanding social situations, less need for rigid routines and time alone and being bullied and teased less often. Our clinical experience confirms the change in coping reactions over time.

Social abilities

Our clients have described having a gradual improvement in social abilities and number of friendships, which included having autistic friends after confirmation of their autism. There is a desire to connect with others intellectually and in the later years, a desire to help other autistic adults. However, socializing remains effortful and energy draining and a lifelong problem.

Ommensen and colleagues found that four out of five autistic adults described experiencing an improvement in social abilities in their mature years, but for one in five, these abilities declined. We speculate that improvement of social abilities may have been due to autistic adults using cognitive rather than intuitive abilities to process social information. A characteristic of ageing in later life is a reduced functioning of the frontal lobes which may explain their reported experience of a deterioration in social abilities.

Employment and relationships

Nearly 60% of the research participants in the Wake, Endlich and Lagos study (2021) indicated that autism had made employment difficult but 26% indicated that autism had helped them in their chosen careers. Our recent self-guided workbook Autism Working provides advice, strategies and activities to manage the difficulties that can arise at work for autistic adults (Garnett and Attwood 2022). We wrote the book with the knowledge that many autistic adults struggle to find and maintain work, despite having many qualities and abilities that are advantageous in the workplace.

A source of stress in the mature years was relationship difficulties, especially a perceived failure to meet the emotional needs of their partners. The Wake, Endlich and Lagos (2021) study found that 26% of participants described how they have never really been close to anyone. The study also found more diversity in sexual orientation for both genders than in the general population. This is consistent with our clinical experience.

Quality of life

There have been several research studies on the quality of life for autistic adults. McConachie et al (2009) confirmed that quality of life was associated with a positive autistic identity and other people’s understanding and acceptance of autism. Other factors affecting the quality of life included mental health issues, the nature of friendships and external support and services. Mason et al (2018) found that the quality of life was lower for autistic adults compared to the general population and that the positive predictors for quality of life were being employed, in a relationship, and receiving support. Negative predictors were mental health conditions and the severity of autistic characteristics.

Maja Toudal is a clinical psychologist and autistic colleague in Denmark. She conducted an internet survey asking autistic adults to describe their concept of quality of life and wellbeing. Their responses included:

To not be disturbed

Not having to act a certain way just because it is supposedly normal or appropriate

Having my own place to hide

Being able to express and be understood

Being able to excel in what you love to do

Space to pursue interests/hobbies

Daily engagement with special interests

Freedom from excess sensory pain/disturbance

Having a purpose in life

Accepting my autism and working with it to create harmony in my life instead of difficulties

It is interesting to note that a sense of wellbeing and quality of life was associated with reduced aversive sensory experiences and being able to engage in a special interest. This is important information when supporting an autistic adult.

The study of Wake, Endlich and Lagos (2021) found that there was an overall improvement in the quality of life for autistic adults after age 50, both in terms of effective coping strategies and improved mental health.

Mental health

Many research participants experienced mental health problems in their teenage years, but not understanding what they were going through at the time and not being able to effectively explain their thoughts and feelings to family and professionals. In the above study, over the age of 50, high levels of anxiety were reported by 74% of research participants and depression by 72%. In the same age range, suicidal thoughts were reported for 38% of participants. One in three of the research participants reported having post-traumatic stress disorder with a history of experiencing abuse in childhood and adolescence.

According to both the Ommensen et al study and that of Wake, Endlich and Lagos (2021) there was distrust and disdain for most forms of conventional treatment and health professionals, especially medical doctors. They felt they were not listened to or understood and unfairly judged and misrepresented, as illustrated in the following quotation.

“They were not interested in me. They’re interested in the drugs they can sell”.

An aversion to drugs was a common theme. Some participants had been prescribed medication for anxiety or depression but found them either unhelpful or the side effects off-putting.  There was also the issue of compliance in taking the medication as illustrated in the following quotation:

“She sent me off to see a psychiatrist and he told me … give me anti-depressants and I … said well, a. I don’t think I’m depressed, b. I’m still breastfeeding and c. you know, can we not talk about this? And he said if I wouldn’t take the antidepressants there was no point me seeing him. So that was the end of our visits. I didn’t take the antidepressants”.

Recovery from depression was slow and lengthy but the majority of participants reported that as they had grown older, they had experienced an improvement in their mental health. This was often due to discovering strategies themselves through identifying patterns in their experiences and emotional reactions and reading and experimentation rather than advice or therapy from health professionals. Several participants in the Ommensen et al study were of the view that psychological treatment was not worthwhile unless it was tailored to an autistic individual’s unique needs and circumstances. Since for most research participants professional help was not seen as a therapeutic option, alternative self-regulatory strategies were actively discovered and employed to regulate emotions. Some of these were maladaptive practices such as the use of alcohol, but most were positive.

Mindfulness, meditation, and spiritual and physical activities, such as gardening, were consistently mentioned as successful techniques for emotional self-regulation. These activities, and sometimes a combination of them, were typically enjoyed as calming solitary pursuits that had developed over the life span and were cited by several participants as important to helping them to achieve a sense of peace and emotional stability without the negative side-effects of medication.

Some conventional cognitive techniques were successful, such as positive self-talk

“I used to try and sort of gee myself up and say, “oh come on for goodness sake” you know you can manage this” and all that sort of thing.”

According to Ommensen et al, with time and life experience, participants had developed greater self-awareness and, ultimately, self-acceptance and self-forgiveness. Their positive appraisal of life left less room for negative emotions such as regret and guilt. The sub-theme of resilience was prevalent throughout the two studies. The participants conveyed stoicism and a lack of self-pity as they each described how they managed, with persistence and determination, a lifetime of mental health issues, relationship and employment difficulties, and feelings of difference and failure. This suggests that acceptance-based therapies would be particularly beneficial for autistic adults.

Medical issues

Research and clinical experience indicate that menopause can be a difficult time for autistic women with an increase in autistic characteristics and more meltdowns as illustrated in this quote: “During menopause I was on 3 meltdowns per week” (Mosely, Druce and Turner-Cobb 2020). Throughout life, there were concerns regarding insomnia or other sleep disorders, allergies and obesity.

There is ongoing research exploring whether there is an association between autism and early onset dementia (Vivanti et al 2021) and Parkinson’s disease (Croen et al 2015). Preliminary research indicates that there may be significantly increased rates of these two medical conditions in autistic adults.

Factors contributing to a positive outcome

Our clinical experience and research suggest that factors contributing to a positive outcome tend to be personal and interpersonal. Personal factors are self-acceptance and a lack of self-pity, such as the comment “I can look back now and cut myself a bit of slack” celebrating the qualities associated with autism and a positive outlook. This includes having a sense of humour, positive reframing, and less self-blame such as the comment:

“I used to think I could make people like me if I tried hard enough. Therefore if they didn’t like me, it was my fault”.

Another factor was discovering new enjoyable activities such as volunteer work and community groups and feeling there was less pressure to conform to society’s standards and focus on activities that brought pleasure and a sense of fulfilment. For many, life experience engendered resilience and, in later life, increased self-awareness and acceptance. Interpersonal factors include connecting with other autistic adults and development of autistic friendships and a sense of belonging.

As explained by Ommensen et al, relative to earlier life stages, later life in the typically developing population generally brings emotional stability and improved emotional wellbeing, reductions in mental health problems, contentment, and a positive outlook. It seems that this pattern is also reflected in the developmental trajectory of autistic adults. There is the potential for positive change in the mature years.

Where to from here?

On September 7 and 8 later this year, we will be conducting a live two-day Masterclass in Sydney: Diagnosis and Therapy for Autistic Adults. Day one will focus on assessing and confirming autism using a range of instruments based on research studies and our extensive clinical experience. The Masterclass will assist clinicians to recognise autism in a variety of presentations, assessing co-morbidity and differential diagnoses and will review the range of screening instruments and standardised assessments or scales. The second day will take the themes of this blog further, increasing the clinician’s knowledge of autism and how to modify therapy for a range of autistic clients.

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

References

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

Bradley et al (2021) Autism in Adulthood 3 320-329

Croen et al (2015) autism 19 814-823

Garnett and Attwood (2022) Autism Working: A Seven-Stage Plan to Thriving at Work London, Jessica Kingsley Publishers

Mason et al 2018 Autism Research 11, 1138-1147

McConachie et al 2020 Autism in Adulthood 2  4-12

Mosely, Druce and Turner-Cobb (2020) Autism 24 1423-1437

Ommensen, B. University of Queensland PhD thesis to be submitted

Vivanti et al (2021) Autism Research 1-11

Wake, Endlich and Lagos (2021) Older Autistic Adults in Their Own Words: The Lost Generation AAPC Publishing, Shawnee, KS.

Autism and sleep

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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

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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

What is PDA?

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What is PDA?

Introduction

The term PDA stands for Pathological Demand Syndrome and was first coined by Elizabeth Newson, a developmental psychologist, in the 1980s in the UK. She described PDA as being extremely high anxiety driven by the need to control and avoid other people’s demands and expectations. The National Autistic Society England describes PDA as being an atypical type of autism. The term does not appear in the international textbooks that guide diagnosis. Nevertheless, there has been growing research and clinical interest in PDA as many people in the Western world recognise the profile in their children and clients.

The behavioural features of PDA have recently been described in a research study by O’Nions and colleagues (2016) to include:

non-compliance to even the most innocuous requests and insistence that others comply with their requests
strategic avoidance of demands
behaviours that suggest awareness of what might cause a diversion
obsessive need for control, including domineering behaviour
a tendency to perceive themselves as having adult status
seeming lack of responsibility or sensitivity to other people’s distress
poor social awareness
sudden mood changes
engagement and enjoyment in fantasy role-play
extreme behaviour, for e.g., intense reactions to losing games, meltdowns

Children and teens with PDA often show positive personality qualities including having charisma, a good sense of humour and are often considered likeable, chatty and fun to be with when not asked to comply with a request.

Superficially PDA appears as defiance and obstinance. A recent study conducted by Stewart and colleagues in 2020 found that anxiety and intolerance of uncertainty was at the base of the child’s attempt to increase predictability and agency in so many situations.

Is PDA a part of Autism?

PDA is considered to be an atypical subtype of autism. It differs from typical autism in that the person shows a superficial sociability and capacity to read situations to the extent that they can manipulate them to avoid complying with demands. These children usually highly value friendship, but lack self-awareness and awareness of others, so often fail to achieve deep connections with peers. They typically have very high levels of sensory sensitivity, a different perception of time and space, and a relative lack of anchoring themselves in social experience.

How do Children with PDA Cope at School?

A survey conducted by the PDA society in the United Kingdom in 2018 found that 70% of children with PDA did not thrive in the school environment or were home-schooled. O’Nions and colleagues found in 2014 that 88% refused to attend school at some point. Children and teenagers with PDA are at great risk for losing their educational placement through exclusion due to schools being unable to create an environment that the child can tolerate to be able to cope with the learning process.

Apparent strengths in their language and communication profile means it is easy for teachers to miss making the necessary accommodations for them and to forget to look at what is driving the behaviour. The child or teenager is often caught in a maladaptive coping strategy of avoidance or arguments, and the school environment often responds with punishment, and each bring out the worst in each other.

Unfortunately, clinical experience and research suggests that the strategies frequently used for autism are often ineffective and counter-productive for a child with a PDA profile.

Where to from here?

During our over 80 years of combined experience in autism we have often worked with children and teens with the PDA profile and their families. We have developed a three-hour presentation to assist families, teachers and professionals to recognise and understand PDA, and to give guidance on the best approaches we know so far. Here is the link:

https://attwoodandgarnettevents.com/product/live-webcast-pda-and-autism/

There are also a number of great resources available, and we highly recommend these:

Both the websites of the UK and Australia/NZ Chapters of the PDA Society:

http://www.pdaanz.com/
https://www.pdasociety.org.uk/

Dr Ross Greene, American Psychologist has developed a model of care called Collaborative & Proactive Solutions (CPS) which is based on research and practice and based on collaboration and compassion. He does not use the term PDA, but instead talks about kids for whom challenging behaviour occurs when the demands and expectations being placed on them exceed their capacity to respond adaptively. His website has some great resources:

https://livesinthebalance.org/

References

O’Nions, E, · Gould, J, · Christie, P, · Gillberg, C. Viding E, & · Happé, F. (2016) Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO), Eur Child Adolesc Psychiatry 25:407–419 DOI 10.1007/s00787-015-0740-2

O’Nions E, Christie P, Gould J, Viding E, Happé F (2014) Development of the ‘Extreme Demand Avoidance Questionnaire’ (EDAQ): preliminary observations on a trait measure for pathological demand avoidance. J Child Psychol Psychiatry 55:758–768

Stewart, L, Grahame E, Honey V, & Freeston, M. (2000). Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents, Child and Adolescent Mental Health 25 (2), 59-67. https://doi.org/10.1111/camh.12336

Do I have autism and ADHD?

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Do I have autism and ADHD?

During a diagnostic assessment for autism with an adult it is quite common for the adult to also query whether they have attention deficit hyperactivity disorder (ADHD). So, what does a diagnostic assessment for ADHD entail? And can it be subsumed within a diagnostic assessment for autism?

Diagnosis of autism

Best practice guidelines for diagnostic assessment of autism include spending time with the person seeking the diagnostic assessment, at least one hour, but sometimes up to 3 hours. It is important to also gain psychometric data, usually from questionnaires, but sometimes from assessments of particular skills, for example the ability to read non-verbal communication, or to read emotion in the eyes. Collection of collateral information, that is information from people other than the person being diagnosed, for example a partner, a family member or a friend, is necessary. This information can be gathered either during the diagnostic interview, through self-report questionnaires, or a telephone or Internet appointment later.

Assessing for ADHD

It is entirely possible to assess for ADHD at the same time as assessing for autism and is indeed advisable. For both conditions it is very important to gain information about the developmental history of the person, from their earliest memories through to the end of high school. When interviewing for an assessment of autism there is a great emphasis on the social aspects of the person’s childhood and adolescence, when assessing for ADHD there also needs to be a strong emphasis on the academic aspects of their schooling experience. Particular questions about the person’s capacity for focus, attention, organising their belongings and time, how well the person could plan and prioritise academic learning, and reference to these concerns by teachers in school reports are very helpful.

Being autistic and having ADHD

Research has shown over several decades now that having a comorbid diagnosis of ADHD with autism is very common and occurs in the majority (60%) of autistic children and adolescents (Stevens, Peng and Barnard-Brak 2016). A more recent meta-analysis showed the range across 63 studies to be between 40 and 70% (Rong et al, 2021). Even if the person does not meet full diagnostic criteria for ADHD, they often show fragments of the condition. We also find that it is common for an autistic adult with ADHD to navigate high school and university successfully, but once their life becomes more complicated, for example with a partner, a mortgage and a family, they start having significant difficulties managing and completing the varied and multiple demands on their time and attention. Without understanding that they have ADHD, the person can begin to question their own self efficacy, and even their own self-worth, as they feel that they are failing life tasks that “everyone else” seems to be navigating. We have seen many adults present to our clinic for depression, only to discover that the driving force of the depression is untreated ADHD.

Our recommendations for diagnosticians

As a diagnostician commencing a diagnostic assessment for autism, it is our recommendation that you both screen for ADHD and be prepared to fully assess ADHD during the diagnostic assessment, or to refer for more testing if that is deemed to be needed.

They are a number of excellent screeners for adult ADHD. We use the Adult ADHD Self-Report Scale (ASRS) from Novopsych. The scale has good internal consistency, and concurrent validity. It has high sensitivity and moderate positive predictive power, suggesting it would rarely miss ADHD in an adult who had ADHD. It has only moderate specificity indicating it that it is quite successful at not identifying someone with ADHD when they do not have the disorder. The norms are based on a large population. Based on percentiles, it is easy to determine whether the individual is likely to have ADHD.

As in any diagnostic assessment, it is important to assess not only for inclusiveness and exclusiveness to the diagnostic assessment criteria, but also determine intervention and a plan for support. Sometimes it can become apparent that there is an underlying learning disability, and more intensive psychometric assessment is warranted.

Typically, an ADHD diagnosis requires understanding and observation of the person’s functioning across multiple settings, for example home, leisure, school and or work. Multiple informants make the diagnostic assessment more accurate and reliable.

Whether to include neuropsychological assessment for a diagnostic assessment for ADHD is reliant on clinical judgement. Our general consideration is, if more detailed information is required to ascertain funding for support, or detailed supports for university and/or work, it is more likely that we will refer for neuropsychological assessment. This assessment typically involves assessment of auditory short-term memory, working memory, attention, concentration, and planning tasks.

Once a diagnosis is made, it is important to speak with the client about their options for treatment. There is considerable research suggesting that a combination of medication, dietary and lifestyle changes, and use of particular strategies to minimise the effects of ADHD on daily life, can be very helpful. If a positive diagnosis of ADHD is made, refer to a psychiatrist who is skilled in this area for consideration of the use of medication.

Where to next?

If you are interested in finding out more about diagnostic assessment for an individual who may have autism and/or any other comorbid conditions including ADHD we will be presenting our Masterclass for health professionals involved in diagnosis for autism in Sydney in September 2022. The event is open to medical and allied health professionals and will be web cast for those who are unable to attend live. Here is the link:

If you are a professional involved in providing therapy and support for autistic adults, you will find Day 2 of our Masterclass particularly helpful:

References

Stevens, Peng and Barnard-Brak (2016) Research in Autism Spectrum Disorders 31, 11-18.

Rong, Y., Chang-Yiang, Y., Yang, Y., Jin, Y., & Wang Y. (2021). Prevalence of attention-deficit/hyperactivity disorder in individuals with autism spectrum disorder: A meta-analysis. Research in Autism Spectrum Disorders, 83. https://doi.org/10.1016/j.rasd.2021.101759

The learning profile associated with autism

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The learning profile associated with autism

Autistic children have an unusual profile of learning abilities that can often be recognised in very early childhood. Some pre-school autistic children have reading and numeracy abilities above the level of their peers. Such advanced literacy and numeracy abilities may have been self-taught through watching educational television programs, computer games and YouTube videos. There are autistic children who appear to easily ‘crack the code’ of reading, spelling, or numeracy; indeed, these subjects may become their special interest at school. In contrast, some autistic children have considerable delay in academic skills and an early assessment of learning abilities suggests the characteristics of dyslexia and dyscalculia. There seem to be more autistic children than one might expect at the extremes of cognitive ability.

Teachers soon recognize that the autistic child in their class has a distinctive learning profile, often being talented in understanding the logical world, noticing details and patterns and remembering facts, and the artistic world with a talent for drawing or music. However, the child can be easily distracted or distressed by sensory and social experiences, and when problem solving, appears to have a ‘one-track mind’ and a fear of failure.  As the child progresses through the school grades, teachers identify problems with organizational abilities, flexible thinking, and group projects. End of year school reports often describe a conspicuously uneven profile of academic achievement with areas of excellence and areas that require remedial assistance.

It is extremely important that teachers and parents know the learning profile of an autistic child to improve his or her academic achievement. This is especially important as children usually have two reasons to attend school – to learn and to socialize. If the autistic child is not successful socially at school, then academic success becomes more important as the primary motivation to attend school and for the development of self-esteem and self-identity. 

Verbalizing and visualizing

Valuable information on an autistic child’s learning profile can be obtained from formal testing using a standardized test of intelligence and tests of academic achievement. Standardized tests of intelligence have at least ten sub-tests that measure a range of intellectual abilities. Some sub-tests measure specific components of verbal reasoning, while others measure components of visual reasoning.

Some autistic children have relatively advanced verbal reasoning skills and may be colloquially described as ‘verbalisers.’ If such a child has difficulty acquiring a particular academic ability in the social and sensory interactive ‘theatre’ of the classroom, then his or her knowledge and understanding may be improved by solitary and quiet reading about the concept. If the autistic child has relatively advanced visual reasoning skills, a ‘visualizer’ then learning may be facilitated by observation of the teacher’s actions rather than listening to their instructions and learning from a computer screen. Learning from a computer screen significantly reduces any difficulties with social and conversational abilities. The ‘verbalisers’ may eventually be successful in careers where verbal abilities are an advantage, for example the legal professions or being an author, and ‘visualizers’ may be successful in careers such as engineering or the visual arts.

Attention

Psychologists divide attention into four components: the ability to sustain attention, to pay attention to relevant information, to shift attention when needed, and to encode attention – that is, to remember what was attended to. Autistic children appear to have problems with all four aspects of attention. The duration of attention to schoolwork can be an obvious problem but the degree of attention can vary according to the level of motivation. If the child is attending to an activity associated with his or her special interest, the level of attention can be excessive. The child appears to be oblivious of external cues that it is time to move on to another activity or to pay attention to the comments, requests and instructions of a teacher or parent. The amount of sustained attention can also depend on whether the child wants to give the attention to what an adult wants them to do. The autistic child may have his or her own agenda for what to attend to.

Even when the autistic child appears to be attentive to the task set by the teacher, he or she may not be attending to what is relevant in the material in front of them. Typical children can more easily identify and selectively attend to what is relevant to the context or problem. Autistic children are often distracted and confused by irrelevant detail, and they don’t automatically know what the teacher wants them to look at.  They may need specific instruction at to exactly what to look at on the page.

Some academic activities require the ability to shift attention during the activity and focus on new information. Unfortunately, autistic children can have difficulty ‘changing track’ while engaged in a ‘train of thought’. There can also be problems with memory processes such that the recently learned information is not stored or encoded as well as one would expect. Autistic children may not remember what to attend to when they encounter the same problem again. This characteristic can affect social situations. Autistic children process social information using intellect rather than intuition and can have problems remembering what the relevant social cues are and changing their conversation ‘track’ when interacting with more than one person.

The autistic child often has considerable problems switching thoughts to a new activity until there has been closure, i.e., the activity has been successfully completed. Other children appear to have the capacity to pause a thought or activity and to easily move to the next activity. In the classroom, autistic children can resist changing activities until they have completed the previous activity, knowing that their thinking cannot as easily cope with transitions without closure. A teacher or parent may need to provide multiple verbal indications when an activity is going to change, perhaps counting down and if possible, allowing the autistic child extra time to finish the task.

Executive functioning

Autistic children and adolescents often have problems with executive function. Perhaps the best way to understand the concept of executive function is to think of a chief executive of a large company, who can perceive the ‘big picture’, consider the potential outcomes of various decisions, is able to organize resources and knowledge, plan and prioritize within the required time frame, and modify decisions based on results. Such executive function skills may be significantly delayed in autistic children and adolescents.

In the early school years, the main signs of impaired executive function are difficulties with inhibiting a response (i.e., being impulsive), working memory and using new strategies. The autistic child can be notorious for being impulsive in schoolwork and in social situations, appearing to respond without thinking of the context, consequences, and previous experience. By the age of eight years, a typical child can ‘switch on’ and use his or her frontal lobe to inhibit a response and think before deciding what to do or say. The autistic child can become capable of thoughtful deliberation before responding, but under conditions of stress, or if feeling overwhelmed or confused, can be impulsive. It is important to encourage the child to relax and consider other options before responding and to recognize that being impulsive can be a sign of confusion and stress.

Working memory is the ability to maintain or hold information ‘online’ when solving a problem. The autistic child may have an exceptional long-term memory and is perhaps able to recite the credits or dialogue of his or her favourite film but has difficulty with the mental recall and manipulation of information relevant to an academic task. The child’s working memory capacity may be less than that of his or her peers. Other children have a ‘bucket’ capacity for remembering and using relevant information, but the autistic child has a working memory ‘cup’ which affects the amount of information he or she can retrieve from the memory ‘well’.

Another problem with working memory is a tendency to quickly forget a thought. One of the reasons autistic children are notorious for interrupting others was explained by an autistic child who said he had to say what was on his mind to his teacher because if he waited, he would forget what he was going to say.

Impaired executive function can include difficulties with flexible thinking.  Typical children can quickly react to feedback and are prepared to change strategies or direction with new information. Autistic children tend to continue using incorrect strategies, even when they know their strategy isn’t working, as they have difficulty conceptualizing different thoughts and reactions.

In the high school years, problems with executive function can become more apparent as the school curriculum changes to become more complex and self-directed, and teachers and parents have age-appropriate expectations based on the maturing cognitive abilities of age peers. In the primary school years, success in subjects such as History can be measured by the ability to recall facts such as dates. By the high school years, assessment in history has changed, and requires that the child shows ability in writing essays that have a clear organizational structure, and that he or she can recognize, compare, and evaluate different perspectives and interpretations. Autistic adolescents with impaired executive function have problems with the organizing and planning aspects of class work, assignments, essays, and homework.

There can also be problems with self-reflection and self-monitoring. By the high school years, typical children have developed the capacity to have a mental ‘conversation’ to solve a problem. The internal thinking process can include a dialogue, discussing the merits of various options and solutions. This process may not be as efficient in the thinking of an autistic adolescent as it is in typical peers. Many autistic adolescents ‘think in pictures’ and are less likely to use an inner voice or conversation to facilitate problem solving. The autistic adolescent may need the teacher or parent’s voice to guide his or her thoughts.

One strategy to reduce the problems associated with impaired executive functioning is to have someone act as an ‘executive secretary’. The child’s mother may have realized that she has already become an executive secretary, providing guidance with organizing and planning, especially with regards to completing homework assignments. The executive secretary (a parent or teacher) may also need to create a time schedule, proofread draft reports and essays, colour code subject books, encourage alternative strategies and create ‘to do’ checklists, with a clear schedule of activities and the duration of each activity.

Such close monitoring and guidance may initially appear to be excessive for an adolescent or young adult with recognized intellectual ability. A parent who provides the support as an executive secretary may be labelled as overprotective by school agencies and family members, but that parent has learned that without such support, the autistic child would not achieve the grades that reflect his or her actual abilities. We encourage a parent or teacher to take on this very important role of executive secretary. We hope that this will be a temporary appointment as the autistic adolescent and young adult eventually achieves greater independence with organizational skills.

Coping with mistakes

The learning profile of autistic children can include a tendency to focus on errors, a need to fix an irregularity and a desire to be a perfectionist. This can lead to a fear of making a mistake and the child’s refusal to commence an activity unless he or she can complete it perfectly. The avoidance of errors can mean that autistic children prefer accuracy rather than speed, which can affect performance in timed tests and lead to their thinking being described as pedantic. An autistic girl complained that her teacher frequently asked her to hurry up but said that if she did hurry up, she might make a mistake.

It is important to change the autistic child’s perception of errors and mistakes. Autistic children often value intellectual abilities in themselves and others, and young children can be encouraged to recognize that the development of cognitive ‘strength’ is like that of physical strength, in that the brain needs exercise on difficult or strenuous mental activity, that includes making mistakes, to improve intellectual ability. If all mental tasks were easy, we would not improve our intellect. Intellectual effort makes the brain smarter.

Adults will need to model how to respond to a mistake and have a constructive response to the child’s errors, with comments such as, ‘This is a difficult problem designed to make you think and learn, and together we can find a solution.’ It must also be remembered that while there can be a fear of making a mistake, there can be an enormous delight in getting something right, and success and perfection may be a more important motivator than pleasing an adult or impressing peers.

Cognitive talents

There are autistic children and adults who have cognitive abilities that are significantly above average and are sometimes described as gifted and talented. This can provide both advantages and disadvantages to the child. The advantages include a greater capacity to intellectually process and learn social cues and conventions. Advanced intellectual maturity may be admired by a teacher and winning academic competitions can lead to greater status for the child and school. Academic and artistic success can raise self-esteem and contribute to social inclusion; their social naivety and eccentricity can be accepted as part of the ‘absent minded professor’ or artistic genius image. However, there are disadvantages.

Autistic children are more socially and emotionally immature than their peers, which contributes towards their being socially isolated, ridiculed, and tormented. Having considerably advanced intellectual maturity in comparison to one’s peers could further increase social isolation and alienation. The child may have no peer group socially or intellectually in his or her classroom.  Having an impressive vocabulary and knowledge can lead adults to expect an equivalent maturity in social reasoning, emotion management and behaviour; they may be unjustly critical of the child who is unable to express these abilities as maturely as his or her age peers.

We have recently recognised that the learning profile associated with autism can also include alexithymia, which can affect the expression of academic talents. Alexithymia is a difficulty converting thoughts into words. The autistic child’s conceptualization or solution perhaps to a mathematics problem may be extraordinary. However, while the autistic child knows their solution is perfect, they may have genuine difficulty explaining how they achieved that solution.

Summary

Autistic children and adolescents have a different way of thinking and learning. This can lead to academic talents and difficulties. Teachers and parents need to be aware of the autistic students personal learning profile and to modify the classroom curriculum to accommodate their distinct learning profile. This can include identifying learning talents and to recognise that autistic people can produce a new perspective on the problems of tomorrow.

Nonspeaking autism and body language

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Nonspeaking autism and body language

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

I’m happy

I don’t know what to do

Leave me alone

Please help me

I feel anxious and stressed

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

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

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

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

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

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

References

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

The movement profile associated with autism​

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The movement profile associated with autism

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

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

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

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

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

The mental planning and coordination of movement

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

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

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

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

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

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

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

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

Handwriting

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

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

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

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

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

Excellence in movement abilities

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

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

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

References

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

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

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

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

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

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

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

How does an autistic child learn?

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How does an autistic child learn?

Autistic children have an unusual profile of learning abilities that can often be recognised in very early childhood. Some pre-school autistic children have reading and numeracy abilities above the level of their peers. Such advanced literacy and numeracy abilities may have been self-taught through watching educational television programs, computer games and YouTube videos. There are autistic children who appear to easily ‘crack the code’ of reading, spelling, or numeracy; indeed, these subjects may become their special interest at school. In contrast, some autistic children have considerable delay in academic skills and an early assessment of learning abilities suggests the characteristics of dyslexia and dyscalculia. There seem to be more autistic children than one might expect at the extremes of cognitive ability.

Teachers soon recognize that the autistic child in their class has a distinctive learning profile, often being talented in understanding the logical world, noticing details and patterns and remembering facts, and the artistic world with a talent for drawing or music. However, the child can be easily distracted or distressed by sensory and social experiences, and when problem solving, appears to have a ‘one-track mind’ and a fear of failure. As the child progresses through the school grades, teachers identify problems with organizational abilities, flexible thinking, and group projects. End of year school reports often describe a conspicuously uneven profile of academic achievement with areas of excellence and areas that require remedial assistance.

It is extremely important that teachers and parents know the learning profile of an autistic child to improve his or her academic achievement. This is especially important as children usually have two reasons to attend school – to learn and to socialize. If the autistic child is not successful socially at school, then academic success becomes more important as the primary motivation to attend school and for the development of self-esteem and self-identity.

Verbalising and visualising

Valuable information on an autistic child’s learning profile can be obtained from formal testing using a standardized test of intelligence and tests of academic achievement. Standardized tests of intelligence have at least ten sub-tests that measure a range of intellectual abilities. Some sub-tests measure specific components of verbal reasoning, while others measure components of visual reasoning.

Some autistic children have relatively advanced verbal reasoning skills and may be colloquially described as ‘verbalisers.’ If such a child has difficulty acquiring a particular academic ability in the social and sensory interactive ‘theatre’ of the classroom, then his or her knowledge and understanding may be improved by solitary and quiet reading about the concept. If the autistic child has relatively advanced visual reasoning skills, a ‘visualizer’ then learning may be facilitated by observation of the teacher’s actions rather than listening to their instructions and learning from a computer screen. Learning from a computer screen significantly reduces any difficulties with social and conversational abilities. The ‘verbalisers’ may eventually be successful in careers where verbal abilities are an advantage, for example the legal professions or being an author, and ‘visualizers’ may be successful in careers such as engineering or the visual arts.

Attention

Psychologists divide attention into four components: the ability to sustain attention, to pay attention to relevant information, to shift attention when needed, and to encode attention – that is, to remember what was attended to. Autistic children appear to have problems with all four aspects of attention. The duration of attention to schoolwork can be an obvious problem but the degree of attention can vary according to the level of motivation. If the child is attending to an activity associated with his or her special interest, the level of attention can be excessive. The child appears to be oblivious of external cues that it is time to move on to another activity or to pay attention to the comments, requests and instructions of a teacher or parent. The amount of sustained attention can also depend on whether the child wants to give the attention to what an adult wants them to do. The autistic child may have his or her own agenda for what to attend to.

Even when the autistic child appears to be attentive to the task set by the teacher, he or she may not be attending to what is relevant in the material in front of them. Typical children can more easily identify and selectively attend to what is relevant to the context or problem. Autistic children are often distracted and confused by irrelevant detail, and they don’t automatically know what the teacher wants them to look at. They may need specific instruction at to exactly what to look at on the page.

Some academic activities require the ability to shift attention during the activity and focus on new information. Unfortunately, autistic children can have difficulty ‘changing track’ while engaged in a ‘train of thought’. There can also be problems with memory processes such that the recently learned information is not stored or encoded as well as one would expect. Autistic children may not remember what to attend to when they encounter the same problem again. This characteristic can affect social situations. Autistic children process social information using intellect rather than intuition and can have problems remembering what the relevant social cues are and changing their conversation ‘track’ when interacting with more than one person.

The autistic child often has considerable problems switching thoughts to a new activity until there has been closure, i.e., the activity has been successfully completed. Other children appear to have the capacity to pause a thought or activity and to easily move to the next activity. In the classroom, autistic children can resist changing activities until they have completed the previous activity, knowing that their thinking cannot as easily cope with transitions without closure. A teacher or parent may need to provide multiple verbal indications when an activity is going to change, perhaps counting down and if possible, allowing the autistic child extra time to finish the task.

Executive functioning

Autistic children and adolescents often have problems with executive function. Perhaps the best way to understand the concept of executive function is to think of a chief executive of a large company, who can perceive the ‘big picture’, consider the potential outcomes of various decisions, is able to organize resources and knowledge, plan and prioritize within the required time frame, and modify decisions based on results. Such executive function skills may be significantly delayed in autistic children and adolescents.

In the early school years, the main signs of impaired executive function are difficulties with inhibiting a response (i.e., being impulsive), working memory and using new strategies. The autistic child can be notorious for being impulsive in schoolwork and in social situations, appearing to respond without thinking of the context, consequences, and previous experience. By the age of eight years, a typical child can ‘switch on’ and use his or her frontal lobes to inhibit a response and think before deciding what to do or say. The autistic child can become capable of thoughtful deliberation before responding, but under conditions of stress, or if feeling overwhelmed or confused, can be impulsive. It is important to encourage the child to relax and consider other options before responding and to recognize that being impulsive can be a sign of confusion and stress.

Working memory is the ability to maintain or hold information ‘online’ when solving a problem. The autistic child may have an exceptional long-term memory and is perhaps able to recite the credits or dialogue of his or her favourite film but has difficulty with the mental recall and manipulation of information relevant to an academic task. The child’s working memory capacity may be less than that of his or her peers. Other children have a ‘bucket’ capacity for remembering and using relevant information, but the autistic child has a working memory ‘cup’ which affects the amount of information he or she can retrieve from the memory ‘well’.

Another problem with working memory is a tendency to quickly forget a thought. One of the reasons autistic children are notorious for interrupting others was explained by an autistic child who said he had to say what was on his mind to his teacher because if he waited, he would forget what he was going to say.

Impaired executive function can include difficulties with flexible thinking. Typical children can quickly react to feedback and are prepared to change strategies or direction with new information. Autistic children tend to continue using incorrect strategies, even when they know their strategy isn’t working, as they have difficulty conceptualizing different thoughts and reactions.

In the high school years, problems with executive function can become more apparent as the school curriculum changes to become more complex and self-directed, and teachers and parents have age-appropriate expectations based on the maturing cognitive abilities of age peers. In the primary school years, success in subjects such as History can be measured by the ability to recall facts such as dates. By the high school years, assessment in history has changed, and requires that the child shows ability in writing essays that have a clear organizational structure, and that he or she can recognize, compare, and evaluate different perspectives and interpretations. Autistic adolescents with impaired executive function have problems with the organizing and planning aspects of class work, assignments, essays, and homework.

There can also be problems with self-reflection and self-monitoring. By the high school years, typical children have developed the capacity to have a mental ‘conversation’ to solve a problem. The internal thinking process can include a dialogue, discussing the merits of various options and solutions. This process may not be as efficient in the thinking of an autistic adolescent as it is in typical peers. Many autistic adolescents ‘think in pictures’ and are less likely to use an inner voice or conversation to facilitate problem solving. The autistic adolescent may need the teacher or parent’s voice to guide his or her thoughts.

One strategy to reduce the problems associated with impaired executive functioning is to have someone act as an ‘executive secretary’. The child’s mother may have realized that she has already become an executive secretary, providing guidance with organizing and planning, especially with regards to completing homework assignments. The executive secretary (a parent or teacher) may also need to create a time schedule, proofread draft reports and essays, colour code subject books, encourage alternative strategies and create ‘to do’ checklists, with a clear schedule of activities and the duration of each activity.

Such close monitoring and guidance may initially appear to be excessive for an adolescent or young adult with recognized intellectual ability. A parent who provides the support as an executive secretary may be labelled as overprotective by school agencies and family members, but that parent has learned that without such support, the autistic child would not achieve the grades that reflect his or her actual abilities. We encourage a parent or teacher to take on this very important role of executive secretary. We hope that this will be a temporary appointment as the autistic adolescent and young adult eventually achieves greater independence with organizational skills.

Coping with mistakes

The learning profile of autistic children can include a tendency to focus on errors, a need to fix an irregularity and a desire to be a perfectionist. This can lead to a fear of making a mistake and the child’s refusal to commence an activity unless he or she can complete it perfectly. The avoidance of errors can mean that autistic children prefer accuracy rather than speed, which can affect performance in timed tests and lead to their thinking being described as pedantic. An autistic girl complained that her teacher frequently asked her to hurry up but said that if she did hurry up, she might make a mistake.

It is important to change the autistic child’s perception of errors and mistakes. Autistic children often value intellectual abilities in themselves and others, and young children can be encouraged to recognize that the development of cognitive ‘strength’ is like that of physical strength, in that the brain needs exercise on difficult or strenuous mental activity, that includes making mistakes, to improve intellectual ability. If all mental tasks were easy, we would not improve our intellect. Intellectual effort makes the brain smarter.

Adults will need to model how to respond to a mistake and have a constructive response to the child’s errors, with comments such as, ‘This is a difficult problem designed to make you think and learn, and together we can find a solution.’ It must also be remembered that while there can be a fear of making a mistake, there can be an enormous delight in getting something right, and success and perfection may be a more important motivator than pleasing an adult or impressing peers.

Cognitive talents

There are autistic children and adults who have cognitive abilities that are significantly above average and are sometimes described as gifted and talented. This can provide both advantages and disadvantages to the child. The advantages include a greater capacity to intellectually process and learn social cues and conventions. Advanced intellectual maturity may be admired by a teacher and winning academic competitions can lead to greater status for the child and school. Academic and artistic success can raise self-esteem and contribute to social inclusion; their social naivety and eccentricity can be accepted as part of the ‘absent minded professor’ or artistic genius image. However, there are disadvantages.

Autistic children are more socially and emotionally immature than their peers, which contributes towards their being socially isolated, ridiculed, and tormented. Having considerably advanced intellectual maturity in comparison to one’s peers could further increase social isolation and alienation. The child may have no peer group socially or intellectually in his or her classroom. Having an impressive vocabulary and knowledge can lead adults to expect an equivalent maturity in social reasoning, emotion management and behaviour; they may be unjustly critical of the child who is unable to express these abilities as maturely as his or her age peers.

We have recently recognised that the learning profile associated with autism can also include alexithymia, which can affect the expression of academic talents. Alexithymia is a difficulty converting thoughts into words. The autistic child’s conceptualization or solution perhaps to a mathematics problem may be extraordinary. However, while the autistic child knows their solution is perfect, they may have genuine difficulty explaining how they achieved that solution.

Summary

Autistic children and adolescents have a different way of thinking and learning. This can lead to academic talents and difficulties. Teachers and parents need to be aware of the autistic student’s personal learning profile and to modify the classroom curriculum to accommodate their distinct learning profile. This can include identifying learning talents and to recognise that autistic people can produce a new perspective on the problems of tomorrow.

We have been training teachers in recognising and supporting autistic students for the majority of our combined 80 years of specialisation in autism.

To learn more about this increasingly important area we encourage you to attend our next teacher training in autism broadcast via live webcast:

LIVE WEBCAST And Live In Townsville: Autism In School – 17 June 2022 – Attwood and Garnett Events 

Why do autistic adults become depressed? Part 1

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Why do autistic adults become depressed? Part 1

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

The reasons autistic adults become depressed

Feelings of social isolation and loneliness

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

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

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

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

The mental exhaustion from trying to succeed socially

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

Internalizing and believing the peer criticisms and torments

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

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

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

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

Belief that change is aversive and unattainable

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

Not being able to cope with specific sensory experiences

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

Being diagnosed with autism

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

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

Family history of depression

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

A ‘sixth sense’ emotional sensitivity

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

The following quotes describe the experience:

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

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

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

How do I find out more?

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

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

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

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

References

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