Autism

Autism:

Key Questions:

  • What changes have occurred in autism diagnostic practice?

  • How do we diagnose autism?

  • How does social and emotional info processing differ in autism?

  • What has a strengths-focused approach shown?

  • What is the experience of autistic adults?

Language:

  • Autism spectrum conditions (often preferred term)

  • Autism spectrum disorders (used in diagnostic manuals)

  • An autistic person is often the term preferred by autistic people

What is the current clinical view?

DSM-iV

  1. Autistic Disorder

  2. Asperger syndrome

  3. Rett’s disorder

  4. Childhood disintegrative disorder

  5. Pervasive developmental disorder

Triad of impairment:

  1. Social interaction

  2. Communication

  3. imagination/rigidity/obsessions

DSM-5: Autism Spectrum Disorder

  1. Social communication & interaction

  2. imagination/rigidity/obsessions + unusual sensory responses

DSM-5 Criteria for Autism:

  1. Socio-communicative impairment across contexts as evidenced by all three of the following:

  • Socio-emotional reciprocity

  • Nonverbal behaviors used for social interaction

  • Deficits in developing and maintaining relationships

  1. Restricted and repetitive behaviors, interests, and activities. At least two of the following:

  • Stereotyped, repetitive speech, motor movements, or use of objects

  • Excessive adherence to routines, ritualized patterns of verbal and nonverbal behavior, or excessive resistance to change

  • Highly restricted, fixated interests that are abnormal or intensity in focus

Prevalence:

Autism prevalence rates were estimated at 4-5 per 10,000 in the 1960s

The current prevalence of autism is 1% in the general pop (Baxter et al., 2015)

Neurodiversity:

  • A social justice movement towards a politics of neurological diversity

  • Away from pathologizing and a narrow conceptualization of normal

  • Vital for the well-being and freedom of neurodivergent people- towards pride and inclusion

What has changed?

  • A shift in terminology

  • A shift in teaching

  • Active pressure on funding priorities

  • A focus on neurodivergent strengths

Diagnosing Autism:

  • Childhood Autism Rating Scale (CARS): brief assessment suitable for use with any child over 2 years of age. CARS assesses specific and relevant characteristics, abilities, and behaviors

  • Gilliam Autism Rating Scale (GARS): assists teachers, parents, and clinicians in identifying and diagnosing autism in individuals ages 3-22

  • The Childhood Autism Spectrum Test (CAST): 39-items, yes or no evaluation aimed at parents for assessing autism symptoms in children

5.8% of individuals score above cut off on CAST and 1 out of 6 of these will meet criteria for an ASD diagnosis using a more stringent test (Williams et al., 2005)

Autism Diagnostic Observation Schedule (ADOS):

• ADOS is considered to be a Gold Standard diagnostic tool. Individuals are evaluated using one of four available modules

• Tasks within modules present numerous opportunities for the individual being assessed to exhibit behaviors included in diagnostic criteria

• Overall ratings are used to formulate a diagnosis through the use of a diagnostic algorithm, which is provided for each module

• But, think about an ecological model – the strangeness of the situation, the power imbalance between an unfamiliar adult and a child

Interview Schedules with Parents ADI-R, 3Di:

An experienced clinical interviewer questions a parent or caregiver who is familiar with the developmental history and current behavior of the individual being evaluated. It focused on three functional domains:

• Language and Communication

• Reciprocal Social Interactions

• Restricted, Repetitive and Stereotyped Behaviours and Interests

• ADOS and ADI/3di are rigorous tests used widely in research

• Diagnosis in clinical settings - reliance on expertise

• Local constraints (rules for additional support)

Genetics:

  • Very high monozygotic twin concordance rates reported in some studies have been taken as evidence that ASD is highly heritable (Castelbaum et al., 2020)

  • The genetic mechanisms involved are complex (Jeste & Geschwind, 2014)

  • There is also considerable difference in presentation between twins (even MZ) (Castelbaum et al., 2020)

  • Jones et al (2013): meta-analysis of prospective studies of infants (0 - 2/3 years) with high familial likelihood for autism (older sibling with a diagnosis)

Other Biological Contributions:

Prenatal exposure to virus:

• CMV: high prevalence of congenital CMV infection in ASD cases (OR 11.31; Maeyama et al., 2018)

• Congenital Rubella Syndrome: 8-13% of those affected receive ASD diagnosis (Mawson & Croft, 2019)

Other early challenges:

• Tuberous Sclerosis

• Foetal Alcohol Syndrome, associated with twice the prevalence as gen pop. (Lange et al., 2018)

• Extreme prematurity: 26% of very early-born children were in the clinically significant range of the M-CHAT (Limperopoulos et al., 2008; Darcey-Maohoney et al., 2016)

A developmental account:

• Johnson (2011)

• Symptoms of autism are likely to emerge from a complex interaction between pre-existing vulnerabilities and the child’s environment (remember - env is not all ‘one-way’)

• Initial genetic and environmental risk factors may interact to alter the development of brain structure and function, altering a child’s ability to learn from their environment

Responding to social interactions:

• Ozonoff et al. (2010) reported a decline in social smiling and gaze to faces between 6 – 24 months

• Less shared positive affect at 14 months (Landa et al., 2007)

• Yoder et al. (2009) ability to combine gaze, gesture, and vocalizations between 15 – 24 months predicted 36-month diagnosis and levels of social impairment

Implications/Downstream effects of early differences in social responding?

• Emotional Understanding

• Social Development

Alexithymia: characterized by difficulties in identifying and describing feelings, difficulties in distinguishing feelings from bodily sensations of emotional arousal, impaired symbolization and a tendency to focus on external events rather than on person experiences (Nehiam et al., 1976)

Kinnaird et al. (2019)

Systematic review of research reporting on alexithymia and autism

• Autistic people scored significantly higher on all alexithymia scores compared to the neurotypical comparison group

• Higher prevalence of alexithymia amongst the autistic participants (49.93% compared to 4.89%), with a significantly increased risk of alexithymia in autistic participants

• Alexithymia is common but not necessarily universal

Other neuropsychological considerations in autism:

  • Executive function deficits are associated with an autistic profile (and many other neurodevelopmental conditions)

  • These deficits occur across EF profiles, but particularly shifting (Weismer et al., 2018)

  • Gardiner & Iarocci (2018): children’s abilities to manage and monitor their behavior were related to adaptive skills

  • One study on sleep and EF suggests that anxiety might play a role (Holingue et al., 2021)

Theory of Mind:

• Defined as a cognitive understanding of others’ mental states (early work by Baron-Cohen)

• Not the same as ‘empathy’

• Assessed using a range of methods:

• Sally-Anne task

• Attribution to object movement

• Narrative about pictures

• ToM relevant to a number of other conditions

• As important as quickly inferring mental states is, this is unlikely to be the whole picture for explaining autism

Friendships and Safe spaces:

  • Friendship is important to autistic children, associated with more positive mental health outcomes (O’Connor et al., 2022)

  • Several studies report that cognitively-able autistic children are more often neglected and rejected by their peers than typical classmates (Humphrey & Symes, 2011; Jones & Frederickson, 2010)

  • Studies of friendships in children with autism suggest that their concept of friendship might differ from non-autistic children

    • Focusing more on companionship, and less on intimacy and affection

  • Calder et al. (2012): “well this may be a little weird, but I don’t know if I have friends or not. I don’t know if children like me, or I like them”

Masking:

Masking refers to using strategies to hide an individual’s autistic differences from others

• Eg. – forcing themselves to make eye contact, or staying in a situation that they find sensorily overwhelming or unpleasant

• In the classroom, it may be tricky to really see a child who is masking – parents may report difficulties at home that don’t manifest in class

• Another consequence might be anxiety

• Stress, exhaustion, poorer well-being and mental health are all known associated outcomes of masking (Mandy & Lai, 2017; Tierney et al., 2016)

• Masking may reduce when someone has a diagnosis and has been able to tell others about themselves and be accepted

Assets and Strengths:

• Against the deficit model

• Nothing about us without us

Savant output is often extremely detailed but it doesn’t lack coherence…

Weak Central Coherence Theory:

Happe: “Central coherence” refers to the “neurotypical” tendency to pull information together and process information in context, looking for the “big picture” and drawing out meaning, often at the expense of details. By contrast, “weak central coherence” refers to the tendency in autism to attend to and remember details rather than global form or meaning.

Theory: The drawing together of diverse information in order to construct higher-level meaning in context may not be a priority in information processing in autism

A cognitive bias, not a deficit

• Artistic savants show enhanced perception (or local bias) and a good appreciation of higher levels of information relevant within domains (no global deficit).

• So they could reproduce features in pictures whilst still producing a globally coherent picture.

• Musical savants very sensitive to pitch information but equally able to appreciate large scale structure

• Calendar Calculating savants have good appreciation of calendar structure

Becoming an adult:

The shift from child to adult services is often difficult to navigate - this is also true for autistic adults

Commonly mental health services aren’t always well set up to understand neurodevelopmental conditions

• But, mental health conditions are not rare in autism

• Anxiety ≈ 40%

• Depression ≈ 35% (both from Hollocks et al., 2019)

• 66% of adults with autism have contemplated suicide (Cassidy, 2014) •

Death by suicide is 7-9 times more likely in people with autism than the general population (Hirvikoski et al, 2016)

Most of the reported barriers involved clinicians’ limited knowledge, lack of experience, poor competence, and low confidence in working with autistic adults (Maddox et al., 2019)

Mental Health:

  • Autism as identity - the minority model of disability

  • Stigma and social rejection, excess social stress leads to negative self-concept

  • Botha & Frost (2020): Minority stressors including everyday discrimination, internalized stigma, and concealment significantly predicted poorer mental health, despite controlling for general stress exposure

Access and inclusion in services:

• Mental health conditions are not uncommon in autistic adults

• Access to appropriate and knowledgeable services is far less common

• Maddox et al (2020): Barriers to effective services include: limited knowledge; lack of experience; poor competence; and low confidence working with autistic adults

• Services need also to consider their knowledge about gender identity and autism (Murphy et al., 2020; Walsh et al., 2018)

The double empathy problem…

•Being misunderstood by society at large creates barriers to participation

• The need for belonging is pretty much universal

• Often results in feeling a need to mask or camouflage to ‘not stand out’ - this is tiring and stressful

• “Neurotypical people thus seem to lack the capacity to empathize with autistic people, just as it is claimed that autistic people lack capacity to empathize with neurotypical people” (Mitchell, Sheppard & Cassidy, 2021