Monthly Archives: July 2022

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