Pitfalls in ASD diagnosis support Ava Ruth Baker

Pitfalls in ASD diagnosis & support -Ava Ruth Baker

Session Outline • The mess it’s in - & links with mental health • Being a professional on spectrum • Current state of autism diagnosis – Concept of diagnosis – Diagnostic Systems – Process of diagnosis • ‘Owning’ diagnosis & support – by individual – by autistic community?

Effects on mental health e. g. link between • how diagnosis is done • misdiagnosis • mental health

“What is clear within the pages of this book is the power that the PNT [predominant neurotype] have over many people with AS, in particular the ‘professionals’ – and, even more in particular, mental health professionals. There are doubtless some good professionals out there in terms of understanding AS, though I would suggest that they are very much in the minority … Until there is a far greater understanding of AS and how the environment (especially the people within it) can & do influence people with AS, and until there are changes made in light of this, people with AS will continue to be vulnerable to mental ill health. ”

Autism & mental health • Mental illness = primary condition eg schizophrenia • Mental ill health = secondary condition resulting from environmental factors – being misunderstood minority in NT world – poorly done diagnosis, counseling, support – etc

“It is essential that clinicians are provided with the appropriate training and support in order to differentiate better between the nature of AS and mental illness – otherwise it is highly likely that misdiagnoses will continue to blight the lives of individuals with AS who may require support – but who are not mentally ill” “Many of the diagnostic processes are potentially going to have a negative effect on an individual’s mental health”

Ava-Ruth’s ‘Autism Spectrum Consultancy’ • Diagnosis – all ages (DISCO) • Post-diagnosis – supports & strategies – short-term counseling • For family members: – Understanding autism – ‘translating’ NT-AS

What diagnosis typically involves • Gathering information • Trying to fit it into a diagnostic box or category • (each diagnosis has its own ‘criteria’ that must be met to ‘fit in that box’)

Concept of diagnosis: social vs. medical model Social model: Condition = ‘difference’ that only becomes ‘disability’ because of society’s response to it Current medical ‘deficit’ model: • Diagnosis needed to access support etc

Diagnostic systems • DSM-IV-TR • ICD-10 • Gilberg et al 2001: Asperger’s Syndrome • Wing & Gould 1979: Autistic spectrum disorder Who uses which, & how, varies

Problems with diagnostic systems • All = Medical ‘deficit’ models • Most = Categorical not dimensional • Focus on ‘triad of impairments’ • Based on behaviors as observed ‘from outside’ • How to use them? Little guidance

Problems with diagnostic systems “There were many more children who did not fit Kanner’s or Asperger’s criteria but who had all kinds of mixtures of features of these ‘syndromes’ … The concept of a spectrum of autistic disorders fitted the findings better than the categorical approach. This does not imply a smooth continuum from the most to the least severe. All kinds of combinations of features are possible. ” -Wing & Gould (9)

Problems with diagnostic systems “Individual needs are best assessed by measuring a person in each dimension not just focusing on whether or not they fit a categorical box” -Wing & Gould (9)

Problems with diagnostic process “The text in DSM-IV … provides only cursory guidelines for the diagnostic process, and a superficial description of the disorder … Training, supervision and extensive clinical experience … are essential before a clinician and client can be confident of the diagnosis. ” –Tony Attwood (10) “The difficulty is how to define these [basic impairments] in operational terms and to specify the borderlines” – Wing & Gould (9)

DISCO (Diagnostic Interview for Social and COmmunication Disorders) • Systematic comprehensive approach to collect and make sense of info needed for diagnosis • For all ages & levels of ability, all positions along spectrum whether obvious or subtle • Outcomes – Diagnosis - any commonly used diagnostic system – Comprehensive report re individual needs – beyond label & ‘triad’

e. g. assessing social criteria “An example of my difference was on summer camp, when we got to do a "sleep over" the last night in tents. That night, shut up in a tent with some of them, I finally noticed that they had something with one another that they didn’t have with me: relationships. For me, being with them that night was exactly the same as being with them had been on the first day. But for them, being with one another had become something else. They knew each other in a way I didn't know them and they didn't know me. I might say, now, that their "knowing" of each other was superficial, partial, "purely social, " etc. But there was something there among them from which I was excluded. Something had happened to them, individually and as a group, during the weeks of the camp that had not happened to me. The other girls had become friends with one another.

e. g. assessing social criteria “Alone there, with no adult present to direct us, they chatted and whispered and laughed and interacted with seamless ease. How did they know what to say? They weren't talking about anything, and yet they talked constantly. (My conversation was limited to specific subjects, not including anything as nebulous as "girl talk") And they seemed to know each other in a way they didn't know me and I certainly didn't know them. I had been with them as much during the summer as they had been with each other; I had done everything they had done (as far as I could tell). And yet I was a stranger there. The only stranger in the tent. It was as if everyone else had studied a script and learned their parts beforehand. In fact, of course, they were improvising brilliantly, thanks to the social code capacity programmed into their brains. ” –Jane (12, p 158)

Problems with diagnostic process – Cursory inconsistent approach to diagnostic criteria (exploring of issues, evaluating of responses etc) – inappropriate use of screening or assessment tools – Professional attitudes / not taking seriously – lack of access to assessment • Private cost • Public quotas & attitudes – brief or ‘token’ assessment – ‘dodgy experts’ (diagnosis & support; NT & AS)

System & Process Problems: Fallout • Mis-interpretation of issues • Missed diagnosis (not considering ASD, or dismissing without full evaluation) • Mis-diagnosis • Un-diagnosing ASD • Professional disagreement, multiple labels, client bewilderment etc • (Negative) label as end-point

Some features of a good assessment • autistic-friendly environment & communication style • assessment of positive traits & all areas of development (not just triad) • written report • beyond label – addressing needs • diagnosis presented in positive way with – access to ‘insider’ views & autistic community – supports & strategies for needs – preparation for the post-diagnosis journey

Those beyond current boundaries • ‘broader autistic phenotype’ (BAP) • ‘ 70% autistic’ ? • = ‘cousins’ in autistic community

Problems with autism diagnosis today • Problems with diagnostic systems & concept • inadequate – Guidelines re diagnostic process – Training in autism, diagnosis & ‘insider’ perspectives • ‘dodgy’ professionals • Difficult to access • Often poorly done: arbitrary & controversial – – dismissing of autism un-diagnosing misdiagnosing or misunderstanding negative spin & no follow-on support • potentially dangerous: causing mental ill health issues, even suicides

What could we do? (while stuck in medical model awaiting change in society) Lobby for • Changes in society • changes in ‘problems’ (see last slide) • standards of quality, training & professionalism for both autistic & NT providers ? autistic community as provider: training, advice, monitoring etc Greater ownership by autistic community

Ownership: Resource List 1. Aspies on mental health: Speaking for ourselves. Ed. Luke Beardon and Dean Worton 2011 2. Tips to identify a good diagnostician or counselor: articles by Roger Meyer www. rogernmeyer. com see Articles & writings: topic index: Counseling • Two Asperger adult shopping guides for finding a good diagnostician and a good personal counselor • Asperger Syndrome diagnosis and checklist for finding a good adult counselor • A new paradigm for more able late adult personal counseling 3. A brief guide for GP’s to adults with higher-functioning autism and Asperger’s Syndrome – www. asnz. exofire. net 4. Invisible at the end of the spectrum (includes section on counseling issues) & Autism and careers requiring empathy: 2 articles by Ava-Ruth Baker see www. asknz. net 5. Asperger’s from the Inside Out: A Supportive and Practical Guide for Anyone with Asperger’s Syndrome. Michael John Carley 2008. 6. Ask and Tell: Self-advocacy and disclosure for people on the autism spectrum, Ed. Stephen Shore 2004 7. Coming out Asperger: diagnosis, disclosure & self-confidence. Ed. Dinah Murray 2006 8. Beyond diagnosis: Welcome to the Autism spectrum! by ASK Trust 2010 (PO Box 4206, Christchurch, New Zealand or www. asknz. net)

Ownership of diagnosis & support Finding a good professional: Ask other autistic adults; check out: – training & experience in adult diagnosis / issues – attitude towards ‘inside’ perspectives, post-diagnosis issues etc – communication - accommodate your style? good listener? – for diagnosis, which processes or tools? (DISCO good; not ADOS for adult; not screening tools for diagnosis) – time, structure & environment for appointments – for counseling / support: who defines the agenda / needs? respect your innate style or try to change it? Being on spectrum not a guarantee of good quality – still need to meet all the other criteria of good practice

Ownership of diagnosis & support Preparing for appointments • Discuss beforehand any particular appointment needs (sensory, communication etc) • Prepare written account of ‘differences’ or ‘issues’ with examples; prioritise issues & needs • Consider bringing support person to – corroborate or exemplify differences & issues – take notes – if NT = also opportunity for help ‘translating’ AS-NT

Successful outcomes happen! “What a godsend. Just not having to justify my way of being, my existence, was a unique experience in itself … Just being accepted for who I am made all the difference … [but it] took 2 years of intensive therapy … to undo all the damage that occurred at the hands of the NHS psychiatric staff, and how to forgive them too. It all went very well, and my life has never been better … It is essential that you track down the right specialists, no matter how long it takes, how much it costs, and how far you have to travel” -Cornish (1, p 84)