NDIA Accountability Project

Submission 45 — PDA Perth WA Parents Support Group — Inquiry into support for autistic children and young people in schools

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PDA Perth WA Parents Support Group

Group Submission to the Education and Health Standing Committee

Parliament of Western Australia

12th July 2023

Inquiry into Support for Autistic Children and

Young People in Schools

Please note that this submission was written by people who identify as neurodivergent so the communication style may differ from that of a neurotypical author.

The brief period nominated for public comment has precluded a referenced document but we can elaborate on sources if further input is requested.

Much of the information presented is drawn from discussions on our page, so this document contains

lived-experiences  rather  than  research-based

evidence, however we would like the Committee to hear the real experiences and thoughts of families who live with PDA.

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Contents

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Introduction

Thank you for listening to our voices – for your consideration of our explanations and experiences and also our recommendations for a better future for all Western Australian students.

Our PDA community wishes to clearly tell you that our education system is not inclusive and is becoming ever less tolerant of difference. This lack of inclusion is significantly harming our children and their families. Harms include lack of access to appropriate accommodations, lack of access to a full education, stress, trauma and lack of acceptance contributing to family breakdown and leading to burnout and self-harm including addiction and suicide.

The mechanisms that are available to families for feedback and consultation within our education system are ineffective and difficult to navigate. Many individual families have had the same issues across the system but each time it is treated as an isolated incidence with no recognition of the frequency of occurrence or contributing systemic issues. These families have enough on their plates with raising a PDA child and any effort to ‘change the system’ is beyond each of us individually. We feel that the government and institutions that exist to uphold our children’s right to an education, instead create conditions that punish and exclude our children and blame our families.

“Diversity is a reality, inclusion is a choice”

This quote from Stephen Frost, Head of Diversity and Inclusion for the 2012 London Olympic Games, comes from his 2014 book “The Inclusion Imperative: How Real Inclusion Creates Better Business and Builds Better Societies”. Frost’s book provides a blueprint on how a deliberate inclusion strategy can negate the social factors that create disability out of difference. We challenge our government to incorporate this kind of thinking into a re-design of our education system.

A deliberate inclusion strategy is needed for our schools. This would create benefits for all children by preparing them for life in a diverse world. With respect to this inquiry, the specific needs of PDA and autistic children in educational settings must be identified and addressed in order to develop and leverage the unique strengths of the autistic community. Autistic people are different, not less. They have much to give and their talents must be recognised and developed.

Aims of This Submission

This submission aims to provide the inquiry with information about Pathological Demand Avoidance (PDA) as a recognised profile of autism, its prevalence, presentation and evidence about how PDA children and their families interact with the education system.

It also touches on the relevant theory that underpins how autism and PDA are characterised and managed including the social and medical models of disability, trauma-informed practice, strength based approaches vs deficit models, ableism, behaviourism and funding.

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TOR1 The prevalence of autism in WA and projected demand for support in schools.

  • What factors are affecting the prevalence of autism in WA?
  • Is autism more prevalent across certain demographics than others?
  • How will an increase in the prevalence of autism affect the availability of support for autistic students in schools?

1.1 About Our Group

The PDA Perth WA Parents Support Group is a very active private Facebook group that provides online community peer support for the parents of children with PDA in the Perth area. The group also hosts face-to-face meet-ups on a monthly basis. Our group is formed of parents from across the Perth, WA wider metropolitan area and our 1000+ members represent almost that many discrete families with at least one child identified as PDA. We cannot provide a breakdown of demographic details but can confirm there is a large range from many different suburbs and school catchments.

There is a parallel Facebook group of health professionals and teachers in Perth under the same administrator, started in February 2023, which currently has over 400 members. The parallel group was formed to cater for people with a professional interest in learning about or discussing PDA.

Our group has strong links to other PDA groups, educators, practitioners, autism groups, ADHD groups, School Can’t groups, advocacy networks and the wider neurodivergent community.

1.2 What is PDA?

PDA is considered a distinct profile that forms part of the broad spectrum of autism presentations, noting that it is defined by a number of consistent key differences from the established autism diagnostic criteria as currently outlined in the psychiatric diagnostic manuals such as DSM-5. In Australia, PDA is noted as a profile of autism in the the AutismCRC document A National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia, 2018.

Increasing awareness in Australia over the last 10 years has led to greater recognition, increased numbers of practitioners with knowledge of the profile characteristics and a subsequent snowballing of children and adults identifying with this neurotype. There are unique challenges for PDA children and their families in the education system.

While there are overlapping features between the PDA profile and traditionally recognised autism, PDA has a distinct set of diagnostic features and requires a very different response. PDA is primarily characterised by extreme anxiety associated with any ‘demand’, leading to avoidance behaviours. The demand avoidance exhibited in PDA is not a choice. It is an innate, visceral response that leads to many different responses and outcomes. It is frequently described as an anxiety-based need for control, leading to extreme (or pathological) avoidance of and resistance to everyday activities.

PDA children may avoid demands through delay, excuses or arguing. They may suggest alternatives, withdraw into fantasy, refuse or become physically incapacitated. It is easy for these children to become overwhelmed and go into meltdown, which can manifest as violence or aggression. Some PDA children can mask their PDA at school, they comply at a cost – their anxiety goes up, self-esteem goes down and they often let out their pent-up stress when they get home. The expression of this can be explosive and is often identified by parents as their child saving up the behaviours until they

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are in safe place or with a safe person. Outbursts and panic attacks, school can’t and physical aggression become more likely as pressure to comply is increased.

The key features of a PDA profile as outlined in the UK diagnostic tool Identifying and Assessing a PDA Profile – Practice Guidance, 2022 are:

  1. Resists and avoids the ordinary demands of life;
  2. Uses social strategies as part of the avoidance;
  3. Appears sociable on the surface, but lacks depth in understanding;
  4. Experiences excessive mood swings and impulsivity;
  5. ‘Obsessive’ behaviour, often focussed on other people;
  6. Appears comfortable in role play and pretend, sometimes to an extreme extent (but not always present).

It is noted that the PDA profile presents differently across different individuals. Some traits may be internalised, appearing more subtle/passive, and in other cases may be externalised/obvious. Coexisting conditions such as ADHD, giftedness and 2E may also impact the PDA presentation along with variations of other autism traits. It should be noted that these children have enormous strengths as well as enormous challenges.

1.3 PDA Parenting Strategies

Children with PDA are typically viewed under traditional lenses as ‘manipulative’ and ‘naughty’. Parents are commonly considered to be at fault because they do not visibly enforce boundaries and avoid direct behaviour management techniques. In fact, as parents learn about PDA their approach to parenting changes significantly. They realise that the commonly-taught parenting strategies are counterproductive for their children and contribute to poor outcomes. They realise they need to pivot to different methods which are highly strategic with much better outcomes for the child and the family. It is difficult to convince others (often including other family members) that these PDA strategies are appropriate because they do not conform to the conventional wisdom on parenting, and this is the source of much conflict for PDA families including in the school environment.

PDA parenting strategies aim to reduce the demand perceived by the child in order to reduce the anxiety induced by demand. Demand may be external or even result from the child’s own

expectations of themselves.  As anxiety  is reduced, the child’s tolerance increases.   It is very

important to understand that this tolerance will fluctuate regularly and ensure the threshold is not exceeded while taking advantage of high tolerance moments to make progress, for example picking the right moment to have difficult conversations. Strategies include:

 Providing a low demand environment which allows the child to do well on their own initiative rather than through parental direction. It can take time for the child to adjust to this but generally they are calmer and will contribute if not pressured to do so.  Boundaries are re-defined and expressed differently in this environment, but there are still boundaries. Rules on the other hand are generally removed in favour of learning empathy and consideration for others.  Co-regulation and the use of declarative language are very effective tools.  Behaviour is seen as communication and strategies such as Ross Greene’s Collaborative Proactive Solutions (CPS) are used to resolve problems and make decisions together in a constructive and collaborative manner.  The child’s strengths are recognised and quietly enabled.

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 Rewards and punishments including star charts are not used because they are highly

counterproductive  for PDA  children – both praise/rewards and  punitive  actions are

ineffective and increase  their anxiety  significantly due to the ongoing perception of

expectations of performance.  The child is spoken to like an adult, given information not choices, is supported to be or become self-determining, is taught and given autonomy.  Novelty is necessary; methods need to constantly change in order to avoid triggering a demand response. This is why the routine-based living advised for autistic children can be counterproductive for PDA children.

1.4 PDA Diagnosis

PDA is currently characterised as a distinct profile of autism. The profile was first described in the UK in 1983 by psychologist Dr Elizabeth Newson OBE, a UK practitioner to whom many non conforming cases of autism were referred. Dr Newson identified a number of common traits which provided families with better insight into their children and their unique needs. Since that time the PDA Society in the UK has developed excellent resources for families and practitioners and in 2022 they collaborated with a number of highly respected practitioners to publish a diagnostic tool, Identifying and Assessing a PDA Profile – Practice Guidance, 2022.

PDA is not listed specifically in either of the two widely-used diagnostic manuals - the DSM-5 (American Psychiatric Association, 2013) and the ICD-11 beta draft (World Health Organisation,

  1. so is not available to practitioners as a stand-alone diagnosis. Prior to the clinical description of PDA developed by Dr Newson, the commonly adopted diagnostic practice was to use the terms “Pervasive Developmental Disorders not Otherwise Specified” (DSM-4) and “atypical autism” (ICD 10). The definition of autism has since been expanded out to “Autism Spectrum Disorder” (DSM-5) and the definition of ASD now encompasses a much more heterogeneous and complex group of presentations under which the PDA profile fits.

In Australia, PDA has generally not been recognised until the last 10 years, when a few practitioners started to inform families of the work done in the UK and provide advice on that basis. In 2018, PDA was listed as a specific profile of autism in the AutismCRC document A National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia, 2018. This paved the way in Australia for diagnostic reports to begin to identify children presenting with this profile using Newson’s descriptors. Prior to that time only a limited number of practitioners were aware of the work of Newson and even then did not formally diagnose the condition and it is therefore not clear how many children will be identified in coming years.

Australian practitioners are now increasingly recognising this profile and adding it into diagnoses, however there are also a large number of practitioners who are either not aware of the profile or do not use the available diagnostic tools. Many PDA children mask strongly outside the home and because they do not present with typical autistic traits, the diagnosis is likely to be overlooked, particularly where parental evidence is misinterpreted, downplayed or dismissed. However the numbers of families recognising this as the best fit for their children (and finding PDA strategies dramatically more effective than standard therapies used with autistic children) has snowballed over recent years. The particularly high difficulty these families face in the education and health systems is becoming increasingly apparent, through support groups like ours and through the professional assistance they seek. No doubt the WA Department of Education statistics on school attendance and refusal across the state (which have been raised in the media repeatedly) clearly reflect this situation.

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Many PDA-aware practitioners, parents and advocates have recently participated in the 2023 review of the AutismCRC document A National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia. They have strongly called for this document to expand on its current acknowledgement of PDA. We were advised that the Guideline Development Committee received many submissions from people with a PDA profile, parents/carers, educators and health professionals regarding the inclusion of PDA in the updated Guideline, which will be published late this year or early 2024. To quote Associate Professor David Trembath, the Co-Chair of the Guideline Development Group in an email to one of our members, “we have received a substantial amount of feedback through the Public Consultation feedback process from people raising the same concerns (re PDA inclusion in the National Guideline) and assure you that we are aware of the issue and reviewing the feedback received”. The best outcome of this feedback would be if the UK diagnostic tool Identifying and Assessing a PDA Profile – Practice Guidance, 2022 is identified as current best practice and adopted as a benchmark for the assessment and diagnosis of PDA in Australia.

1.5 PDA Prevalence

It has been estimated that PDA is present in 5 to 10% of autistic people (PDA Society UK estimate), however is an emerging diagnostic profile in Australia so the actual prevalence is unknown. Until diagnostic tools are widely implemented and practitioners become familiar with and implement them, actual rates will remain unknown. There has certainly been a large uptake of PDA learning and adoption of strategies by thousands of struggling families over the last few years as the

description has become  available as a  best-fit explanation  for  their  child’s  profile.  Some

practitioners are attracting large numbers of these families due to their reputations for PDA awareness, others deny its existence altogether. There are currently multiple national, online PDA parent support groups with over 4000 members in each group in addition to local groups like ours.

There is some debate about the overlap between demand avoidance due to autistic overload /

burnout vs anxiety vs PDA.  This overlap  is currently not well defined and  is something our

community regularly discusses.

There is a strong gender bias that dampens the awareness and diagnosis of girls with autism. It is likely that girls are still being regularly overlooked for diagnosis because autism diagnostic criteria were developed based mainly on male presentations. There does however appear to be a growing awareness that autism is likely to appear equally in males and females despite differences in presentation, and this equal representation is recognised as likely to occur for PDA also. Diagnostic rates in the UK are equally spread across males and females.

Like autism generally, PDA appears to have genetic links and regular co-occurrence with other diagnoses such as ADHD. There does not appear to be any evidence of greater prevalence across

certain  demographics,  however  the  access  to  appropriate PDA  awareness,  support  and

accommodations may certainly vary and this will impact outcomes. Families with demographic, economic or social privilege may be less likely to experience negative interventions from outside authorities when their children are exhibiting the outward manifestations of PDA symptoms.

1.6 Is PDA New or Nuanced?

While PDA is an emerging diagnostic differentiation of a profile under the autism spectrum, there is a strong view within the PDA and wider neurodivergent community that PDA is clearly a distinct set of co-occurring symptoms that are apparent across generations in their families. Adults are increasingly being diagnosed with PDA and are suddenly able to make sense of the events of their

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lives in the context of PDA. Features of PDA are noticed in other family members. There is clearly a strong genetic link and evidence that it existed before it was scientifically ‘discovered’ and described.

Diagnoses under the autism spectrum are constantly being reviewed and refined as more becomes known. Just as it took many decades for autism to be included in diagnostic manuals, PDA will take time to find its place in the literature and attract funding for more research. It is a difficult condition to study, since those with PDA can typically mask very effectively, presenting a surface sociability that defies recognition in the diagnostic and school settings and often relies on the evidence of parents to identify the private manifestation of accumulated anxiety. Some of our parents have recently taken part in research being currently undertaken at Edith Cowan University on the impact of PDA on families.

So how is it that adults with undiagnosed PDA were able to survive and often thrive, when their children are hitting such road blocks in our education system? What a great question for researchers to investigate. Possibly these adults were able to ‘fly under the radar’ to a greater extent as children. Perhaps our modern diet and environment has an impact on children, amplifying the impact of PDA (fantastic work has been done by Howard and Sue Dengate on this through their Food Intolerance Network on diet and environmental factors). Perhaps the rise in standardised testing and a full curriculum places more pressure on both children and teachers. Perhaps the whole-of-school behaviour management systems now mandated are more conspicuously targeting and labelling children who cope less well in the classroom, escalating their distress. Perhaps the strengths of PDA children are receiving less focus than their faults and their inherent skills are therefore not being recognised and developed. Whatever the case, it is clear that PDA children can grow to be adults with great strengths and that when not treated like children and with adult autonomy, they can thrive.

1.7 Impact of Increased PDA Diagnosis on Support in Schools

Based on anecdotal evidence from our group it is apparent that PDA children are highly over represented in incidents, restraint, school can’t, suspensions, exclusions and expulsions from school. Significant numbers of PDA children leave the school system to home school, often after shifting schools a number of times seeking a better fit. Data on this are not collected by the Education Department, so the extent of the problem is difficult to quantify. Parents in our group regularly identify that it is difficult to find a school environment that is inclusive of their children or responsive to a collaborative approach to develop appropriate individual plans for their child’s education.

Better recognition of PDA as a diagnosis should provide for easier and more targeted support for these children and their families. Providing school staff with training on working with PDA children through co-regulation, declarative language and CPS would provide most of what a PDA child needs in a school setting and provide a more collaborative framework for the whole school community,

replacing the  reactive  tool  of behaviour management with a  proactive  culture  of mutual

understanding through relationship building. This will only work with systemic change as discussed in section 2 below.

TOR 2 Current support available for autistic students in WA schools

including consideration of how:

a. evidence-based practices are implemented across the school system; and b. school supports are co-ordinated with other service areas to respond to the needs of autistic students and their families.

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  • What are the challenges and successes for implementing evidence-based practices across the school system?

  • What is the interaction between school supports and other service areas that autistic students are accessing?

  • What is the interaction between State and Commonwealth funded services?

  • Support available for autistic students in WA schools may include: o services o practices o strategies.

  • The WA school system includes schools in locations that are: o metropolitan o rural o regional o remote.

2.1 Current Practice

2.1.1 Applied Behaviour Analysis (ABA)

The current special needs provision for autistic students in WA schools appears to be strongly based in ABA or modified ABA practices in segregated settings. While these practices are considered evidence-based by those who use them, they are increasingly being identified by the neurodivergent community through lived experience as abusive and unsuitable for ANY child. The American Medical Association House of Delegates voted at its 2023 Annual Meeting to remove explicit support for ABA in its Policy H-185.921, with preamble for the change noting that the evidence for use of ABA is weak and there is significant evidence of harm (See Appendix A for a copy of Resolution 706 from the AMAHD handbook). We recommend that a review be undertaken on the use of ABA practices in WA schools in accordance with the evidence presented in Resolution 706. Members of our group and many others have raised significant concerns with respect to the use of ABA and feel that these concerns have not been given sufficient weight or consideration given the mounting evidence.

Whether or not ABA continues to be used by the DoE WA, we strongly advise that this type of intervention is completely inappropriate for PDA children. The recent expansion of special needs units in WA schools therefore does not cater for PDA children and should be reviewed carefully for all children. In addition, “special” programs take children out of mainstream classes and are not inclusive practice.

In 2020, a teacher at the School of Special Educational Needs – Disability (SSEND) wrote a position paper on PDA (“Some Reflections on Pathological Demand Avoidance Syndrome (PDAS) / Demand Avoidance Phenomenon (DAP) towards a SSEND position on PDAS: A brief discussion guideline with selected content considerations” 7.8.20 by Consulting Teacher Jim Cabrera). This position paper recommended that applied behaviour analysis be continued as the “methodology for supporting successful evidence based behavioural change”.

The basis of the recommendation was that the existence and definition of PDA was under debate and that research was sparse and strongly contested. This indicates the author has a considerably biased and cherry-picked position that is not supported by wider evidence - note that this paper was written two years after “A National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia” listed PDA as a profile of autism for diagnostic purposes. With the subsequent production of the 2022 UK Diagnostic Guideline “Identifying and Assessing a PDA Profile – Practice Guidance”, and the large numbers of existing diagnoses under the PDA profile locally, we

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propose that this position paper should be retracted immediately and/or updated to reflect the acceptance of PDA as a diagnosis and strongly acknowledge that ABA is an inappropriate approach that should not be used with PDA children.

Further, the paper notes that ABA is used by SSEND for the “shaping of desired and shaping out of

undesired behaviours”.  This is the foundation of calls by the autistic community to ban ABA.  It is

strongly held that autistic people are not ‘wrong’ in their autistic behaviours such as stimming, avoiding eye contact and moving to aid focus. In fact these behaviours are natural and normal for autistic people and help with regulation, mood and concentration. Training these behaviours out is considered by the autistic community as conversion therapy for autistic people, it teaches them that their natural neurotype is somehow abnormal and unacceptable. Being a minority neurotype does not mean being wrong.

The ABA methods include rewarding autistic people for dropping their natural behaviours and adopting neurotypical responses that are unnatural to them. This teaches autistic children that they need to ignore their natural reticence and do as the adult tells them. At best this is othering them, teaching them to mask themselves and suppress their true selves which in the longer term leads to autistic burnout. At worst it leaves them open to predators, who have easy pickings with children who have been trained to do things that feel wrong without question. Autistic people experience higher rates of sexual assault than the general population and ABA has been identified as a contributing factor to that.

This outdated and seriously damaging education methodology needs to stop, and the lived experience voices coming from the autistic community need to be heard.

2.1.2 Whole-School Behaviour Management Systems

Again, to assess practice we need to look at outcomes. In the workplace, practices are considered to breach the Discrimination Act if they have a greater impact on members of a particular group (by gender, disability etc). In schools there are heavy biases apparent in adverse outcomes, with a regularly disproportionately high number of Aboriginal and Torres Strait Islander and disabled children represented in figures for incidents, suspensions and expulsions.

We believe that this results from the system, not the children. There are complex reasons why behaviour results from the differences in culture, communication styles, social norms etc. The

double empathy problem described by Damian Milton  in 2012  is an example of  this – an

understanding that there are differences in the ways autistic and non-autistic people communicate and socialise has replaced the previous assumption that autistic people have no empathy and lack

social  skills.  The onus should not be on autistic people to change their communication to a

neurotypical style, rather everyone needs to learn different styles in order to understand each other and be more inclusive. In schools, autistic children are punished just for being autistic. This is akin to punishing a paraplegic student for not participating in physical education lessons requiring students to run or walk. It is a matter of “can’t” not “won’t”.

The concept that behaviour is communication is becoming more widely accepted and is backed up by significant evidence. Dr Ross Greene’s widely adopted CPS model is based on the concept that “kids do well if they can” – making sure that sufficient accommodations are in place and then working collaboratively and proactively to resolve the issues that lead to the behaviour. Dr Greene will be touring Australia in September to provide CPS training, including in Perth, and it is hoped that this will raise awareness of the benefits of collaborative problem solving across our education system and other settings.

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Children with visible and invisible difference are the ones who will inevitably fall foul of behaviour management systems. Consequences escalate the problem and do not teach regulation or desired behaviours. They do not solve the problems.

For PDA children, the mere existence of the behaviour management system is an added demand. Even when doing well, they are constantly concerned about the level of control, performance expectations and the possibility of falling foul of the system.

Many of our parents have talked about the punishments their children receive. Being kept in at break times, when after an episode of dysregulation, these are the very children who need the break

and the exercise.  Restraints.  Exclusions.  Limited hours at school.  None of this is solving the

problem and  it  is punishing children for having a  disability.  Whole of school “behaviour

management” needs to focus on building positive relationships with students and their families, not on punitive measures for behaviour that results from unmet student needs.

2.1.3 Teacher Training

Our understanding is that teacher training courses contain very minimal material on the variable neurotypes and teaching for neurodiversity. Many of our families have stories of teachers with no ability to relate to or understand their children’s’ needs, communication styles or educational preferences. Yet it is highly likely that teachers will have at least one diagnosed child in their class each year and they will encounter a range of different neurotypes (diagnosed and undiagnosed) over their careers. This lack of training must be addressed. Material for training needs to be developed by (or at least in close consultation with) neurodivergent people and preferably delivered by them.

Ongoing professional development for all educators throughout their career, and communication channels are needed to ensure there is support for teachers to remain abreast of contemporary thinking, language and practices around neurodiversity in schools. For example, the makers of the “Whole Body Listening Larry” poster have only recently substantially updated their resource in recognition that the concept of whole body listening was an ableist concept, but how many of the old posters remain in classrooms and how few teachers are aware of the update and its significance to autistic students?

2.1.4 Teacher Neurodiversity

By whatever means neurodiversity among teaching staff is currently handled, it certainly does not appear to be celebrated or leveraged in a way that may assist neurodivergent students, nor indeed to be managed in a way that is positive for neurodivergent teachers themselves. We understand there are privacy issues, however we do know that there are teachers out there that find their neurodivergence is best kept quiet and for good reason. For example the staffroom discussion around diagnosed students can be personally hurtful to these teachers and they do not feel empowered to change the narrative or to put themselves forward as positive role models.

2.1.5 Curriculum and Standardised Testing

The WA Curriculum is written for a polytropic learning style. It layers a little additional learning each year in multiple topics, with the same themes running across each topic’s year-level learning. Neurotypical people (the majority) are better adapted to the polytropic nature of the resulting constant change through the school day – skimming across the surface of multiple subjects, later with different teachers and different classes, building greater complexity on the same subjects year after year.

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Autistic and other neurodiverse children are most likely to have a monotropic learning style, which manifests as a hyperfocussed state. Their preference is to ‘deep dive’ topics of interest to them, and they find transitions and interruptions difficult. They often do not cope with a large range of subjects and the constant interruptions create significant stress. Our schools and curriculum are not designed to accommodate the monotropic learning style of neurodiverse people.

In addition, neurodivergent people often have widely diverse learning trajectories and sensory variations. They may sit well outside the norm and naturally learn things both earlier and later than the centre of the distribution where others sit. A 2E child may be able to calculate a rocket’s trajectory to the moon, but be unable to navigate to the bathroom to urinate or even be able to sense their own need to urinate due to poor interoception. This asynchronicity makes it difficult to cater for them in a classroom setting without a deep rethink of curriculum and delivery.

Standardised testing has received a lot of attention recently and again, is not at all suited to neurodivergent children. It does not allow a child to demonstrate their depth of knowledge or understanding of a topic. ‘Non-standard’ people do not necessarily do well on standardised tests, and they may have extraordinary strengths that are never recognised because the focus is elsewhere and there is no class time available. We know of children that score poorly in the ICAS maths test which is a multiple choice year-level test, but achieve a distinction in the AMC, which is extension maths and higher order problem solving. The maths talents of such a child may never be discovered through standardised testing and curriculum based work.

2.1.6 Individual Education Plans (IEPs)

Individual education plans currently vary widely in their development, application and outcomes. Our group proposes that an IEP should comprise the accommodations that the school needs to provide in order to give the child access to the same education as their peers. It should set targets for the school, not for the child (targets for the child are unfortunately all too common with no methodology of how the school will support these and little allowance for the child’s diagnosis or parental / treating health professional input). An IEP should be strongly rooted in reports from practitioners and input from the parent as to the child’s needs. If the child has sensory needs, these should be built in to the environment, tracked and reviewed. If the child has difficulty with adjusting to substitute staff, a regular trusted substitute should be used in that class or other strategy, including giving the family the choice to keep the child at home for the day. None of these measures need to be expensive or difficult, but they do need to be tailored, responsive, deliberate actions to ensure the environment is inclusive to the needs of the student. This assists in avoiding incidents caused by significant escalations of anxiety.

Options available to schools as part of IEPs need to be clear. For example, curriculum modification is currently allowed but all schools are not aware of this. Students can drop non-core subjects such as languages and physical education, and can be furnished with alternatives such as a sensory room or library that will assist them to regulate during the day. Such breaks in a safe haven and the nomination of a safe person within the school can be vital tools for autistic children. Such accommodations are few and far between in Western Australian schools.

Many of our families have found that schools are unwilling to provide accommodations for their neurodiverse children because “it wouldn’t be fair on the other children”. This common attitude does not recognise that such accommodations exist to level the playing field and provide equal access to education for a child with neurodevelopmental differences. A school would provide a ramp for a child in a wheelchair, not say that the wheelchair user needs to use the stairs because it wouldn’t be fair on other children for that child to have a ramp. Similarly, would it be “unfair” to

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give a child their corrective lenses/glasses or their insulin because the others would miss out? This highlights the nonsensical nature of this argument. Because our children’s neurotype is not visible, it doesn’t mean that accommodations to remove social disability should not be provided. Even giftedness is an outlier that requires particular accommodations in education, although on the surface these children don’t need help.` The difference between equality and equity needs to be better understood and implemented in order to provide a level playing field for children with invisible disability.

2.1.7 School Can’t

School can’t has traditionally been labelled as school refusal. The current Australian Senate inquiry acknowledged the importance of terminology and used the preferred term of “school can’t” in its hearings. The experiences of parents in groups like ours is that school can’t is based in trauma and burnout, and it is all too common.

Trauma and burnout are loaded words that make it sound like parents are overdramatising the response of the child. How can a child be traumatised or reach burnout, when the majority of children find school to be a happy and safe environment and staff have only good intentions? Yet

this  is what our  children’s’  occupational  therapists,  clinical  psychologists,  Psychiatrists and

Paediatricians are telling us. The fight / flight / freeze / fawn responses are activated, memories of school are triggering responses that are based in trauma-type brain function, the sensory overload is so great that autistic burnout is the result.

There is clear evidence now that the traditional approach of exposure therapy – just forcing a child to school and trusting the school to manage it from there – is counterproductive and poor practice. Yet this is the message given to parents – they need to bring the child kicking and screaming to school, put the whole family through this day after day, with escalating behaviours and distress. We are given the message that it is the parent’s fault if the child cannot attend. This is the direct result

of behaviour management techniques including use  of  restraints and punishments,  lack  of

accommodations, poorly-conceived or non-existent IEPs, social exclusion, bullying and sensory overload.

Trauma-informed practices need to be incorporated into responses to school can’t.

2.1.8 Home Schooling

Many hundreds of families in our group and other WA autism and education related groups have reported that at some point they sense that they have become too hard for the school, either to make accommodations for their child or to retain a student with school can’t. The schools appear to decide to “cut the child loose”, and act in a way that makes it clear the child is not welcome at the school. For example, our families commonly report being called into meetings with a large number of school staff, and being given ultimatums or unreasonable expectations, with the opt-out that “You could home-school your child”.

Home-schooling is often a last choice option for PDA families as it carries significant negative impacts, although families can over time find it a joyful experience that restores balance and relationships in the household without the anxiety that results from the school environment. We know that many PDA families move to home-school after their children develop school can’t, often after moving schools multiple times and sometimes bringing the child to the point of eating disorders and self-harm. It often takes months, if not years for the children to recover and be able to learn again after experiences like this. Many families report their child becoming very violent or hiding in their bedroom, unable to function on even a basic level like personal hygiene, eating and

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exercise. With time, patience, often therapy and a complete backing off on expectations, the children can recover. It takes a massive toll on families and parental relationships.

A long period of school recovery is something that most families moving to home-schooling report, and yet it is not acknowledged by home-school registration processes. Nor is the last-option nature of the move, the Education Department sends a letter stating that since you have now ‘chosen’ to home-school, your child’s education is now entirely your responsibility. It is difficult to access distance education through the department and if you do, accommodations are as hard to access as in mainstream school. There is very little funding available to support the move to home-school.

The moderation process for home-school registration  is variable and  is becoming increasingly

controlling. Over time, the demand to link to the WA curriculum content and year level has risen. Moderators are insisting on particular programs or levels of documentation. Threats of de registration for insufficient progress appear to be increasing.

Policy around the provision of home-school registration should be significantly reviewed in light of contemporary work by practitioners such as Dr Naomi Fisher on the needs of neurodivergent children. There is strong evidence for the efficacy of student-led learning programs, which are difficult for parents to justify within the current home-schooling policy framework. These children have exited mainstream schooling in part because the curriculum does not meet their needs, yet it is increasingly being pushed as a requirement using the threat of de-registration and returning a child to mainstream school.

2.1.9 Culture Across the Education System

There is a status quo in our education system and in our society which PDA children and their families simply do not fit into. It is commonly described in the neurodivergent community as behaviourist and ableist. This entrenched culture is the biggest single barrier to implementing change.

Because our children do not fit the mainstream expectation, there are a wide variety of flow-on effects. Our families are often seen as difficult, because we have to step up and advocate for our children who need something other than what is offered. We are seen as undesirable participants in schools, who make complaints and cause trouble. We are referred on to other schools or told they can’t cater for our child or our enrolments are mysteriously not processed. None of what we do is fun for us either, many of us are neurodivergent parents so our communication styles can clash with the people we need to interact with and our preference is often to avoid conflict.

There is a huge power imbalance in how parents can deal with schools. It is individual families against a huge department with enormous resources and policies designed to quash individual

needs.  Complaints processes are clumsy, ineffective and punitive.  Teaching staff don’t have the

time or resources to respond and should not have to deal with systemic needs anyway. Support and

appropriate training  is not made  available.  Even furniture, equipment and consumables in

classrooms are often provided by the teachers out of their own pockets, which means that any requests for additional needs becomes a personal imposition on the teacher. What sort of organisation stands by while its staff use their own money to buy the furniture?

So many of our members have found that the attitude of educators and administrators makes all the difference in whether our children thrive or remain at school. Individual teachers or school leaders can create an environment of tolerance, acceptance and appreciation of the enormous strengths our children bring. Or they can have the opposite effect. All schools should be child-safe and inclusive. Currently they are absolutely not.

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2.1.10 Governance

The governance role of the Minister for Education in the education system includes compliance and accountability. In recent years we have seen the Minister lead the behavourist charge, coming out in the media to identify crackdowns through tougher behaviour management and punitive measures. This is counterproductive to an inclusive school system.

Complaints by parents to the Minister directly or through local Member communications are unresponsive and unhelpful as the Minister appears just to defer to advice from the Department, or even forward complaints back to the school, making life even harder for families. Investigations are carried out within the Department and do not lead to change. Complaints to the Ombudsman are generally ineffective.

The role of governance is to look both inward and outward to ensure the organisation is fulfilling its responsibilities. The Minister for Education should reference documentation such as the United Nations Rights of the Child and disability legislation and ensure that the activities and processes of the department are consistent with these types of obligations. Our 1000+ members are consistent in their view that this is not at all the case.

Even the additional funding given to schools per student to cater for disability requires better governance oversight. There is such variation across schools as to how this funding is spent, and it appears to be entirely at the discretion of the school Principal. Some families are provided with EA support and the accounting is fully disclosed to the family, others have no idea where the money is spent and can’t see any visible spending to support their child’s needs. One family was somehow given to understand that the disability funding provided for their child’s needs contributed towards a new set of football goals. Whether or not that is true, clearly there is a lack of transparency in this spending.

Inclusion, compliance and accountability need to be driven from the governance level and it needs to be consultative with a genuine desire to listen, learn and drive change.

2.2 School Coordination With Other Services

2.2.1 Finding Appropriate Services

First and foremost, appropriate services for PDA are difficult to source. Because it is an emerging diagnosis, few practitioners are sufficiently familiar with it to provide really useful assistance and indeed people are regularly misdiagnosed or not diagnosed. Unless you have lived with PDA it is very difficult to understand the condition and even more difficult to accept the management techniques that differ so greatly from how we have all been conditioned to think about parenting or therapy techniques. In Perth we are fortunate to have some practitioners who understand PDA through lived experience, but they are in high demand and difficult to access as a new patient.

Services for children are now very difficult to access for any condition, with long wait lists, closed books and age limits. Who you eventually manage to see after this lottery will determine the advice given. Some practitioners are quick to medicate for anxiety, others will recommend many hours of therapy, others still advise no therapy for the child but recommend parent education and coaching in order to transition to PDA parenting strategies. Services could well be described as hit and miss and it can take many months or years for parents to cut through the narrative they are given to determine whether therapy is having a positive, negative or no impact.

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Another general observation is that parents are often under-estimated as the experts in their child’s needs. They are routinely gas lighted by practitioners who, for example, observe the child in a state of masking (remembering that PDA children are very good at masking, often highly intelligent and use social strategies to great effect), and because they see an apparently regulated child with a worried and anxious parent, they blame the parent for projecting their own anxiety onto the child. With PDA children there appears to be a ‘honeymoon period’ where they can maintain a calm external persona for new people, and it may not be until many months into therapy, if ever, that the practitioner starts to see the child that the parent knows. This ‘medical gaslighting’ can be incredibly damaging for PDA families, with a variety impacts such as delaying the necessary upskilling of parents or exacerbating conflict in family separations.

What many of us have in common is that our PDA children demonstrated difficulty in the school environment, either showing it through dysregulation at school or acting out once home from school. We see meltdowns, often extreme and violent, coming from a child that an hour ago was sitting calmly in a classroom. We see the shame that follows these outbursts. We see the rising anxiety and dropping self-esteem that comes from sucking it up at school and following demands. For this reason, we strongly advocate that parents of PDA children need to be listened to and believed. They need to be supported and given the skills to be the first line of help for their children rather than relying on service providers interacting directly with their children.

That being said, many of our children do require services, including for co-existing conditions and these services can be very helpful. Body dysmorphia and gender dysphoria occur more commonly in neurodivergent children. Learning disabilities, dysregulation, sensory needs, giftedness and 2E also

co-occur  regularly.   Emotional  regulation,  occupational  therapy,  psychometric  assessment,

psychological therapy and speech therapy are all areas where our members have found useful services, more so when the services are neurodivergent-aware and/or trauma-informed and/or engage respectfully with parents.

We do need to ask carefully what the impact of therapies will be and whether a ‘do nothing’ option or low-intervention is a better model of care for PDA in some cases. Some families have taken their child to therapy after therapy and it has not answered in the long term and has taken a large toll on their family. Others have been advised by practitioners to try a low intervention approach (which is a refreshingly ethical approach from a health professional who could otherwise be profiting from regular consultations) and this has turned out to have good long term outcomes for the child.

We would particularly point to the ABA model that calls for many hours of therapy / segregated special education each week as being particularly poor practice for PDA children.

Activity-based therapy such as horse-riding, art and music have been reported to work well for many of our families, whereas many families report their children have a very low tolerance for psychology-based therapies and social skills programs.

Children who are taken to lots of therapy learn there is something about them that needs to be fixed. It is another form of “othering” for the neurodivergent community and is often deficit-based, focussing on changing them rather than recognising and building on their strengths. The othering results in masking and people pleasing behaviours – a quiet child mimicking neurotypical behaviours is not a calm and happy child – they are working hard to achieve this and all their focus goes on masking. They have very little attention left for learning and are likely headed for anxiety and autistic burnout.

The  neurodivergent community more  generally  is  strongly  reflecting a  sense  of  pride  in

neurodivergence and “different not less”. There is a lot of lived experience that now regrets participation in many well-meaning therapies that, on reflection, caused harm. Instead these

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families have developed a lot more self-reliance and now celebrate the strengths of neurodiverse people. The medical model of listing the deficits of neurodivergence is replaced by the social model, where disability is only present because of social and physical barriers. In the wheelchair analogy, the presence of a ramp overcomes the need to use stairs which facilitates the ability to enter a building, thereby overcoming the social disability. For sensory issues, this may mean allowing use of headphones, fidget toys or alternate furniture. Language is important – for example instead of noting “non-compliance” there might be a nod to “initiative and independent thought”. We need to look to building our neurodivergent children up from their strengths rather than down from their differences. What will happen to our future Einsteins if we break their spirit at school?

2.2.2 Service Coordination For Diagnosis

There is a plethora of different diagnostic documentation required by various agencies – disability funding applications for the school, NDIS funding for therapies and support, Centrelink funding for carer payments and home-school payments; all require different evidence. On top of what is actually noted in policy, there are other interpretations of what is required communicated to

families at various times.  The different requirements and interpretations  all place additional

burdens on families to understand and meet the various needs of different agencies. In addition, diagnosis is expensive, complex to organise and difficult to obtain in a timely manner. Diagnosis and meeting additional requirements after the fact may well be beyond the reach of some families.

Our understanding of Department of Education WA requirements is that at least two clinicians must be involved in the diagnostic process. If either of these clinicians involved in the diagnostic process is a clinical psychologists or a paediatrician, the family may only need two clinicians. However, if the assessment is conducted by a generally registered psychologist and a speech pathologist, it must be signed off by a paediatrician or a clinical psychologist for recognition by the DoE WA. If a clinical psychologist has conducted the assessment and there is a referring paediatrician involved, there may be no requirement for a speech pathologist for the DoE WA to accept the diagnosis.

For diagnosis to access the NDIS, generally a diagnosis conducted by a clinical psychologist, clinical neuropsychologist, paediatrician, or psychiatrist is recognised in order to access services. However, some members have found that the NDIS has rejected diagnoses conducted by general psychologists and speech pathologists alone, requiring sign-off from clinical psychologists and paediatricians.

On top of this, the Autism CRC National Guideline can be open to interpretation.

2.2.3 Service Coordination for Education Purposes

For school purposes, a school-based assessment option could be considered that considers teacher observation or family-based self-diagnosis as a valid trigger for developing an IEP. This would use parent and teacher input in combination with an in-school assessment to provide with a more timely way to identify that an IEP would help the child, even if it does not immediately release additional funding to the school. This would get the child’s education onto the right footing and time waiting for diagnosis to occur externally, often taking years, is not wasted.

Families may even decide not to pursue a diagnosis, particularly where they are not seeking NDIS or Centrelink funding, and this is a valid course of action for families to take, but it should not affect whether or not their child receives an appropriately-tailored education. Note that families can still seek practitioner support externally even without a diagnosis and an imputed diagnosis would be made. Schools may even ask families to seek assistance with particular areas that they believe would benefit or complement the child’s education.

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Where families do have specialists on board, parents should be consulted as to whether these professionals can add value within the school to guide the IEP and the school’s program for the child. For a PDA child, school staff should recognise that the child they observe may include involuntary masking that may obscure significant anxiety and other emotions. They need to listen carefully and follow the advice of professionals and parents in order to reduce the overall demand on a PDA child, whether or not the child is reacting to the demand as it happens. A child who appears compliant at school but acts out when they get home is not able to learn at their full potential and is carrying a significant mental and emotional burden. Most of that child’s effort at-school is being expended in maintaining the mask and the school environment should respond by taking some of that pressure off.

Where specialist programs are offered within a school or there is referral to a separate program, there should be full transparency with parents to ensure their full understanding and acceptance of the program. Information should be provided that families can review with their external service providers. Access should be available for parents and/or their service providers to view the program in action with their child. Transparency and collaboration with families is very important.

TOR 3 Strategies in other jurisdictions that support school systems to respond to the needs of autistic students, and the applicability of those strategies to WA.

  • How do strategies in other parts of Australia and other nations support autistic students?

  • How effective are those strategies and how applicable are they to WA?

  • Strategies from other jurisdictions may include (but are not limited to): o autism education strategies o state autism strategies.

3.1 Inclusiveness in Education

Our position is that inclusiveness needs to be strongly supported as the fundamental tenet of education. Creating conditions in schools that recognise diversity, create understanding, encourage acceptance and foster respect for diverse perspectives will have enormous benefits for not only the students and staff in schools, but for society more broadly. We have already pointed in the introduction to Stephen Frost’s inclusion methodology; this might provide a good basis for a blueprint.

The common thread with diagnoses is they are based on medical models of disability, which are deficit models. They talk about deviations from the norm and describe them as negatives, rather than differences that might provide a new way of looking at things. It is rare for the medical model to acknowledge strengths or equivalences. This process is emotionally difficult for children and their families and can leave them feeling very negative about a diagnosis. Our schools need to provide a neuro-affirming environment that turns that around and focusses on diversity as a strength.

An inclusion model would celebrate difference and welcome it as providing new ways for all of us to see the world. If a child needs to draw in class in order to be able to listen to the teacher better, then the process of drawing is enabling and should be welcomed, we can all reflect on what helps us to focus when there is such a clear exemplar among us. If a child needs to move in order to learn to spell words, then sit them on a ball instead of a chair. Better still, have an active spelling game with the whole class and see if it helps other kids too. An inclusive approach may also turn around

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statistics on incidents, exclusions, suspensions and involuntary home-schooling and improve safety and job satisfaction for school staff too. We all want the same outcomes.

3.2 Choice and Diversity in Education

Providing diversity of models and delivery in education would strengthen our school system. Different children thrive under different conditions at school, and not every school suits every child. When schools provide a different offering, we can offer that choice. Families will soon tell us where they find value.

The search for choice is already occurring within the state’s gifted and talented programs. The examinations for entry to the GATE program are advertised as exams you can’t study for, they aim to identify gifted students through their natural aptitude in a number of areas. However there is a booming industry for tutoring in preparation for the exam, and families who want their children in high-performing schools are starting tutoring early in primary school and continuing to provide tutoring throughout their children’s’ school life. There is an appetite for specialist programs.

The GATE program might provide a good base on which to expand specialist programs in WA. We don’t need to look outside WA for good practice if we already do it well. It should be noted that anecdotally there is a high proportion of autistic children within the GATE program, so academic excellence is likely to provide a welcoming environment for these autistic students, since it is clear they have chosen to enter these programs and are thriving now. GATE is a strength-based model and the learning in our experience tends to be more adult-learning style, so the ethos may be adapted well to PDA learners.

New models like the All Saints Studio School in Fremantle may provide good local examples of diversity of curriculum, environment and delivery method that would provide good alternatives and add to choice for families. Even the standard provision of flexible options for school can’t students by providing pathways for part time attendance and/or online learning as easily available options would be of great benefit.

3.3 SA Autism Commissioner and Office

South Australia’s introduction of an Autism Commissioner and office has been well covered by the media. This initiative is clearly facilitating a better understanding of the needs of autistic people and will facilitate change through consultative processes. Such an initiative could be put in place in WA to represent all aspects of neurodiversity. Reference is made here to how the SA Dept of Education acknowledges PDA and educates their staff on it -https://www.education.sa.gov.au/docs/support and-inclusion/practice-guidance/About-autism-and-pathological-demand-avoidance-PDA-profile.pdf

3.4 Future Schools Program

Peter Hutton is a Co-Founder and Director of the Future Schools program. He appeared on Lou Kuchel’s Square Peg Round Whole podcast to discuss how the status quo can be challenged in education. The also discussed the reasons why such change is not enacted or resisted, even when it has clear benefit. Future Schools is a growing organisation that currently supports over 100 schools in Australia. Their model could bring fresh ideas to WA schools that would assist with an evolving mind-set on inclusion.

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3.5 Dr Naomi Fisher and Child-Led learning

Dr Fisher is based in the UK where PDA has been recognised and studied for much longer than in Australia. She has written two books that examine child-led learning which provide a good model for the home-schooling of PDA children including in the initial phases of addressing burnout and trauma. These principles could be included in the thinking around home-school registration and support and also extended into school-based learning.

3.6 PDA in UK Schools

With the UK being so far ahead on PDA recognition and accommodations  in schools,  it  is

recommended that Australia look to the UK for ideas and experience. There are a number of different schooling models that have emerged around PDA that may assist in shaping future education in Australia.

3.7 Dr Ross Greene’s CPS

Dr Greene is also a featured guest on Lou Kuchel’s Square Peg Round Whole podcast. He has been introducing his Collaborative Proactive Solutions to schools for decades in the US, with great results. CPS provides a framework for identifying and resolving the issues that lead to student behaviours, so is a long term solution that helps both the student and the staff to avoid having to address poor

behaviours.  It can be used with any child regardless of the presence or absence of diagnosis.  It

changes the mind-set from managing behaviour to collaborative problem solving. Dr Greene will be in Perth in September providing CPS training, and this would be a good opportunity to evaluate the program for its suitability in WA schools.

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Appendix A American Medical Assoc. HOD Resolution 706

Resolution 706 adopted June 2023 with a change in title: “Caring For Neurodivergent Patients”

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Resolution: 706 (A-23) Page ? of 4

Whereas, ABA has been repeatedly linked to Post Traumatic Stress Disorder (PTSD), with 46% of 460 ABA participants meeting the diagnostic threshold for PTSD in an online

survey“: and

Whereas, Adults with autism have been continuously outspoken about the trauma incurred by ABA practices expenenced in thei childhood?**—“*, and

Whereas, A 2012 literature review found the evidence base for services for adults with an ASD to be underdeveloped?’; and

Whereas, A 2018 Cochrane review recommend further research after reporting very weak evidence in support of ABA™: and

Whereas, A202? informal online community survey found that 71% of adults with autism

responded “disagree” or “strongly disagree" to the statement “Generally speaking, | support

ABA therapy for autistic children“; and

Whereas, A 2020 Deparment of Defense report demonstrated a lack of correlation between improvement in symptoms and hours of direct ABA services, found that ihe improvements recorded were due to reasons other than ABA services, and ABA services did not meet the TRICARE hierarchy of evidence standard for medical and proven care=*; and

Whereas, A 2021 study on conflicts of interest (COIs) in autism early intervention research found COls to be prevalent and under-reported, with 70% of studies containing a conflict of interest and less than 6% declaring them as such™*: and

Whereas, Curent research supports altematives to ABA such as the Developmental, Individual Differences, and Relationship-based (DIRTM) program, the PLAY Project,

individualized Earty Social Interaction (ES!) and, Social Communication, Emotional

Regulation, and Transactional Support (SCERTSTM}==*; and

Whereas, Current AMA policy supports the use of ABA through its advocation of coverage of ABA and the evidence-based treatment for autism and fails to recognize its ham: or controversial nature within the community at large: therefore be if

RESOLVED, That our American Medical Association support research towards the evaluation and the development of interventions and programs for autistic individuals (New HOD Policy); and be it further

RESOLVED, That our AMA work with relevant stakeholders to advocate for a comprehensive spectrum of primary and specialty care that recognizes the diversity and personhood of individuals who are neurodivergent, including people with autism (Directive to Take Action); and be it further

RESOLVED, That our AMA amend Policy H-185.921 “Standardizing Coverage of Applied Behavioral Analysis Therapy for Persons with Autism Spectrum Disorder” by addition and deletion as follows:

SSR ESSSSESHARHEOSSSSBYSREGNSSSSISHEGR IS cms amewns

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ee

Resolution: 706 (A-23)

Page 3 of 4

Standardizing Coverage e-Apeted SehaveuralLinahysts

Therapy for Persons with Autism Spectrum Disorder, H 185.921

Our AMA supports coverage and reimbursement for evidence based treatment of services for for Autism m Spectrum Disorder

(Modify Current HOD Policy)

Fiscal Note: Not yet determined.

Received: 4/3/23

Maenner MJ. Prevalence and Charectenstics of Autism Spectrum Disorder Among Children Aged 8 Years — Autsm and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2078. MWR Surved! Summ, 2021;70.

doi: 10.1 5585vremer-ss701 fal

VWikenfald DA, McCarthy AM. Ethical Concems with Applied Behavior Analysis for Autem Spectrum “Disonder.” Kennedy Inst Ethics J. 2020-201-31-08. doi: 10.1353/hen.2020.0000

(Grusor-Wood JF. im a Juggling Robot An Ethnography of the Ongancation and Culture of Autsm-Based Applied Behaviour Theramies in Ontario, Canada. Published online August 24. 2018. Accessed March 12, 2022 hitpssfyorkspace library. yorku.ca’emluihandle/ 1031535587

John LaRosa. 32 Billion U5. Autism Treatment Market ls Poised for Growth Next Year. MaretRieseanchcom. Published December 10, 2020. Accessed April 15, 2022 hitpsalblog marketreseanch com/2-billion-u_s.-autem-reaiment-marketis

potsedforgnowth-next-year CentralReach. ABA and Behavioral Health Sofbware. Published 2020. Accessed Apal 15, 2002) hitps:!centralreach.com!

Autism Speaks. Resource Guide | Autism Speaks. Published 2022. Accessed April 15, 2022.

ina 5. ‘The man behind Seay “comsrsion therapy” started out trying to make autistic chidren “normal.” ” LGET Nation. Published March 17, 2001. Accessed Manch 12, 2002. https. www gotonation.conv202 1 (iman-behind-ex-gay-conversion therapy-started-trying4maneautistic~chikdren-noermall Pyne J. “Guiding @ Person” Legal and Clinical Personhood for Autistic and Trans Children in Ontano. Gan Law Soc Rew Gan Droit Societe. 1-385. doi: 10.101 7iets. 2020.8

Rekers GA, Lowaas Ol. Treatment of Deviant Sex-Riole Behaviors ina Male Child 1. J App! Behav Anal

TST4T (2) 173-190. doi: 10. 180 1jaba.1874.7-173 Gibson MF, Douglas P. Disturbing Behaviours: Ole Ivar Lovaas and the Queer History of Autism Science. Gafal Fem Theory Technoscience, 201 84(2) 1-28. doi 10 2806 8’cht wh? 20573

. Sandoval-Norton AH, Sh Is longterm ABA therapy abuse? Rushby or oat GAINED. cee 10 MUSUSaa1 DS D019 toe Tse aK

ed. Cagent Psychol. 201

  1. Ennight.J. The Gold Standard” for Autistic Children. Fourth Wave. Published February 14, 2022 Accessed March 12, 2022.

hittess(imedium. con fourtHwave/the-gold-standard-for-autstic-children-ed 15e9e73’18a Silberman 3. Meuroimbes: The Legecy of Autism and the Future of Newrodrvenity. Penguin; 2015.

Cand Milman. Is ABA. Dog Traming for Children? Professional Dog Trainer Weighs In NeuroClastc. Published

March 27, 2019. Accessed sm hips! neurod.astic. conmvis-abaeally-cdog-iraining-for-chil i

Faye Fahrenheit. An Open Letter to the NYT: Acknowledge the Controversy Surmunding ABA. NeuroCastic. Published

January 12, 2020. Accessed March 12, 2022. hitps:!ineuroclastic.convan-opentetter-tothe nyt-acknowledgethe-controversy

ABA Honor Stones Are Far Too Gommmon. NeuroClastic. Published August 17, 2021. Accessed March 12, 2002. hittpsslnewrod astic conv aba-homor-stories-arefar-tocscommon! The Great Big ABA Opposition Resource List. Stop ABA Support Autistis. Published August 11, 2012 Accessed March 12,

Disabilities. pd. Published online 2017. Accessed April 15, 2022. hitps:/autishcadwocacy.ongiwp-contentiuploads!2017/07/First (Cassidy 5, Bradley L, Shaw RP Baron-Gohen 5. Risk markers for suicidality in autistic adults. Mol Autism. 207281 p42.

oi: 10.1 18s 11 Ht

in 4 Evidence of increased PTSD im autistics ‘to ied behavior analysis. Adv Autism

A018 4 1p 1a oo 1g HOGA Sposed to app a

Shattuck PT. Rloux AM, Hudson LE, Tayéor JL, Maenner WW, Trani JF. Services for Adults With an Autism Spectrum Disorder. (Can J! Psychiatry Rey Gan Psychiatr. 2072-57 (5)-254-291 .

Reschow 6. Hume K- Barton FE, Boyd Bi. Early intensive behavioral wtervention (Fle By for you oF pane eo cabs spectrum disonters (ASD). Gochrane Database Syst Rew. 201825:CDO008260. do:10.1 81

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Resolution: 706 (A-23) Page 4 of 4

  1. Chos Bonnell. 11.521 people answered this autism survey. Waming. the results may challenge you. - Autistic Mot Weind. Autistic not Weard. Published October 1, 2018. Accessed April 15, 2022 hitpsclautsticnohweindcom20 1dsurvey!

  2. The Department of Defense. The Denariment of Defense Comprehensive Autism Gere Demonsiraiion Annwal Report. The pepeags. His gow news aaa autsm_care report 2000 pat

2). Bottema-Geutel K, Crowley Fae ea Hee mee er oe atin Saba era Behaviog Analysis Autism Laersture. Front Psyobot, 2021: 12. Accessed Apel 15, 2022. hitns:liwww.frontiersin ong/articia!

  1. Wong C, Odom SL Hume K, et al. Evidence-Based Practices. fior Children, Venti, oral Yorn ha and ‘Young Adults. weth Autism Spectrum Disorder. 7174.

  2. Soloman RF, Van Egeren LA, Mahoney G, Quon Huber MS, Zimmerman P. PLAY Project Home Consultation Intewenton for ‘Young Children With Autem Spectrum Disorders: A Randomized Trial. J Dey Bahay Pedisdr. 2014358 )-4-465. do 10.109 7/08P OD00000000000086 215 pat. Published online July 2075. Accessed March 12, 2022 org comme EUR H ical cancers carat Metical Conenargef-Aicrm Seances Actaeins- Stench cred Fenris

  3. Wetherby AM. Guthrie Wi Woods J. et al. Parent-implemented social intervention for toddlers weth autism: an RCT. Pediatrics. 2014; 12 ANG 1084-1098. doi: 10.14 2ipeds.2014-0757

RELEVANT AMA POLICY

Early Intervention for Individuals with Developmental Delay H-90,969

(1) Our AMA will continue to work with appropriate medical specialty societies to educate and enable physicians to identify children with developmental delay, autism and other developmental disabilities, and to unge physicians to assist parents in obtaining access to appropriate individualized early intervention services. (2) Our AMA supports a simplified process across appropriate goverment agencies to designate individuals with intellectual disabilities as a medically underserved population.

Citation: CCBICLRPD Rep. 3, 4-714; Reaffinmed: Res. 315, 4-17;

Community-Based Treatment Centers H-160.963

Our AMA supports the use of community-based treatment centers for substance use disorders, mental health disorders and develoomental disabilities.

Citation: BOT Rep. F, I-91; Reaffirmed: Sunset Report, |-01; Modified: CSAPH Rep. 1, 4-11; Modified:

CSAPH Rep. 1, 4-21;

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