Autism Spectrum Disorder Overdiagnosis Stretchability Where Does the
Autism Spectrum Disorder: Overdiagnosis & Stretchability Where Does the Spectrum End? Brisbane Metro Interagency Forum 12 July 2016 Dr Peter Parry Child & Adolescent Psychiatrist Snr Lecturer, University of Queensland
Learning Intentions • Understand criteria for ASD diagnosis and changes over time. • Consider what factors could be driving an increase in ASD diagnoses • Appreciate the complexities of childhood communication, emotional and behavioural problems in terms of co-morbidities, equifinal symptom endpoints and the biopsychosocial model. • Consider fair methods of allocating precious education, health and welfare resources.
History of ASD • Holy Fools – Brother Juniper (C 12 th Franciscan), Dostoevsky’s “The Idiot” • 1943 US child psychiatrist Leo Kanner describes case series: – 11 children obsessive insistence for sameness, solitary play = “Infantile Autism” • 1944 German scientist Hans Asperger describes boys with milder version – Intelligent, obsessive interests, problems socially • 1950 s/60 s Uni of Chicago Bruno Bettelheim = “refrigerator mother theory” DSM Changes: • DSM-I (1952) – Childhood Schizophrenia (no ASD) • DSM-II (1968) – Childhood Schizophrenia includes “autistic, atypical, withdrawn” • DSM-III (1980) – “Infantile Autism” as distinct category = severe cases from infancy • DSM-III-R (1987) – “Autism Disorder” = loosening of criteria – increase diagnoses (Volkmar et al. Am J Psychiatry 1988; 145: 1404 -8 ) • 1988 “Rain Man” with Dustin Hoffman based on Kim Peek
DSM-IV Pervasive Developmental Disorders Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association, 4 th edition (1994) 1. 2. 3. 4. 5. 299. 00 Autistic Disorder 299. 80 Pervasive Developmental Disorder, NOS 299. 80 Asperger’s Disorder 299. 80 Rett’s Disorder 299. 10 Childhood Disintegrative Disorder DSM-5 changes: • Rett’s Disorder removed • Other 4 = ASD • Addition of unusual sensory behaviours • Deficits social communication and social interaction combined • More criteria descriptions
ICD-10 Pervasive Developmental Disorders F 84
DSM-5 Criteria for ASD 299. 00 Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association, 5 th edition (2013) 1. Persistent deficits in social communication: 1. 2. 3. Social-emotional reciprocity Non-verbal communication Understanding and maintaining relationships 1. 2. 3. 4. Stereotyped movements Inflexible routines Fixated interests Hyper- and hypo- sensitivities 2. Restricted, repetitive patterns of behaviour: 3. 4. 5. • Symptoms present since early development Significant impairment Not solely due to intellectual disability Specify severity: 1 “requiring support”, 2 “substantial support”, 3 “very substantial support”
DSM-5 Other Neurodevelopmental Disorders • Intellectual Disabilities: – Mild, Moderate, Severe Intellectual Disability – Global Developmental Delay • Communication Disorders: – Language Disorder – Speech Sound Disorder – Stuttering – Social Communication Disorder • ADHD • Specific Learning Disorder (reading, writing, maths) • Developmental Coordination Disorder • Tic Disorders • Other Neurodevelopmental Disorders
DAMP & DBD & Anxiety Comorbidities • Disorder of Attention, Motor Control & Perception – Gillberg (Norwegian paediatrician) • Disruptive Behaviour Disorders (DBDs) – Oppositional Defiant Disorder – Conduct Disorder • Separation Anxiety Disorder • Obsessive Compulsive Disorder • Trauma and Stressor related – Reactive Attachment Disorder – Disinhibited Social Engagement Disorder – PTSD and other stress reactions
Rising Rates of ASD • For 4 decades following Kanner 1943: – Prevalence 2 to 4 per 10, 000 children • Post DSM-III-R rates rose dramatically
Rising Rates of ASD Wing & Potter 2002
Rising Rates of ASD Wing & Potter 2002
Rising Rates of ASD Fombonne 2009 • A best estimate of ASD = 60 to 70/10, 000 (0. 6 to 0. 7%, or 1 child in 150)
Rising Rates of ASD in USA CDC website 2016 • 8 y. o. Boys 1: 42; Girls 1 in 189 by 2010
Latest Rising Rate of ASD in USA CDC National Health Statistics Report, November 2015 • Prevalence of autism (ages 3 to 17) increased 80 percent from 2011 -2013 to 2014. • From 1 in 80 (1. 25%) to 1 in 45 children (2. 24%). • 1 in 30 boys! • Related to alteration in CDC questionnaire. • Higher income white American families
CDC USA rates of ASD since 1997
Explaining the Increase in the Prevalence of Autism Spectrum Disorders: The proportion attributable to changes in reporting practices. Hansen et al JAMA Paediatrics 2015 • Danish data: children born 1980 – 1991. • “Changes in reporting practices can account for most (60%) of the increase in the observed prevalence of ASDs in children born from 1980 through 1991 in Denmark. ”
Causes of Rising Rates? • Better detection true cases? – Various brain changes/deficits but no clear consistency • Environmental factors interacting with genetics? Harrington & Bora in press: – – – Evidence ASD starts in-utero Older mothers and fathers Folic Acid/Iron def in utero Survival prem babies, twins, triplets etc Toxins, autoimmune dysfunction Not vaccines – according to 100 s studies and meta-analyses – but are couple dozen contrary studies re: thimerosal (Hg) and/or Aluminium adjuvant – WHO 2006. Statement on Thiomersal: “The Global Advisory Committee on Vaccine Safety concludes that there is no evidence of toxicity in infants, children or adults exposed to thiomersal (containing ethyl mercury) in vaccines. ” – Thimerosal/thiomersal removed from vaccines in Australia in 2000. • Loosened diagnostic boundaries? • Secondary gain social drivers? – Diagnostic upcoding • Education funding, welfare payments, Medicare – Diagnosis du jour – Medicalisation of systemic attachment & social problems
Diagnostic Substitution Science Daily July 2015
“False Epidemics” of DSM Disorders • “Psychiatric Diagnosis Gone Wild: The 'Epidemic' Of Childhood Bipolar Disorder” Emeritus Prof Allen Frances – in Psychiatric Times 2010 • As Chair of the DSM-IV Task Force I bear partial responsibility for two other false "epidemics"-of attention-deficit and autistic disorders. • “Thought leading” researchers encouraged child psychiatrists to ignore the standard bipolar criteria…Then enter the pharmaceutical industry – not very good at discovering new drugs, but extremely adept at finding new markets for existing ones.
Federal Funding for Autistic Children 2007 • Tim Fischer • MP 1984 -2001, National Party leader 1990 -2001 • Deputy PM, Australia 19961999 • Later Ambassador to the Vatican • Son with autism – reason retired from parliament • PM John Howard 2007: • “motivation for the (new funding for autistic children) package” from the Fischer family
Diagnostic Upcoding for ASD • Before age 7: – Centrelink welfare parent/carer payments. – Special Medicare rebates for psychologists, speech pathologists, OTs. • Before age 13: – Special Medicare rebates for child psychiatrists, paediatricians • Funding for educational assistance to schools.
Diagnostic Upcoding • Batstra & Frances. Diagnostic inflation: causes and a suggested cure. J Nerv Mental Dis 2012 • Frances & Batstra. Why so many epidemics of childhood mental disorder? J Dev Behav Paediatr 2013 • Skellern, Schluter & Mc. Dowell. From complexity to category: responding to diagnostic uncertainties of autistic spectrum disorder. J Paediatr Child Health 2005 – Diagnostic upcoding in Qld high among children with learning disorders. Up to 1 in 50 Qld school children. • Thivierge. Precision and unfairness of the PDD-autism diagnosis NADD Bulletin (Canada) 2008
Leon Eisenberg Chair APA Section of Child Psychiatry (amongst innumerable posts and honours) Brainless Psychiatry v Mindless Psychiatry
Biopsychosocial Model George Engel
Biopsychosocial Case Formulation Nurcombe B. Diagnosis and treatment planning in child and adolescent mental health problems. In Rey JM (ed), IACAPAP e-Textbook of Child and Adolescent Mental Health. Geneva: International Association for Child and Adolescent Psychiatry and Allied Professions 2014.
DSM Introduction • “generally atheoretical stance” (with respect to aetiology) – is designed for research, caution needed clinically and not appropriate forensic/insurance purposes – introduction to DSM-III. • “not to be used in a cookbook fashion” – introduction to DSM-IV.
Spitzer’s mea culpa • “Relentless in its logic, Horwitz and Wakefield’s book forces one to confront basic issues that cut to the heart of psychiatry. It has forced me to rethink my own position… • The very success of the DSM and its descriptive criteria… has allowed psychiatry to ignore basic conceptual issues… especially the question of how to distinguish disorder from normal suffering. ” • “DSM diagnostic criteria… ignored any reference to the context in which they developed. ” Robert Spitzer (former chair DSM-III) Foreword to book: “The Loss of Sadness: How psychiatry turned normal sorrow into depressive disorder”
DSM-5 struggling with reliability (poor kappa field trials) let alone validity – but ASD not too bad http: //www. madinamerica. com/2013/03/the-dsm-5 -field-trials-inter-rater-reliability-ratings-take-a-nose-dive/
Backlash against biomedical reductionism • The Psychologist May 2007 – Magazine of British Psychological Society. – “In an attempt to emulate general medicine psychiatry has attempted to distinguish between different psychiatric diseases, each assumed…own specific pathology. …the story is not that simple. ” J. Moncrieff, psychiatrist
CHQ-CYCHS Guideline 19913 31 May 2016
CHQ-GDL-19913: Assessment of ASD • Screening: – Parents Evaluation of Developmental Status (PEDS) – Checklist for Autism in Toddlers (CHAT) – Ages and Stages Questionnaire • Triage by Developmental Paediatrician • Comprehensive Child & Family Assessment – Paediatrician/psychiatrist + 2 other disciplines with ASD expertise. Plus/minus: • Autism Diagnostic Observation Schedule (ADOS-2) • Child Autism Rating Scale (CARS-2) • Neither are diagnostic of themselves • Focus on diagnostic formulation • Must meet criteria for DSM-5 diagnosis • Feedback the diagnostic formulation to the family
Diagnostic Formulation & Sharing the Pie • Limited pie – Special Education, NDIS • In 2011 Federal CWSN (Children with Special Needs) funding ($12 k) expanded to beyond ASD: – Cerebral Palsy, Down syndrome, Fragile X syndrome, hearing/vision impairments • But: Better to focus on individual impairments in severity & contexts rather than diagnostic label per se.
Discrimination by Diagnosis Mc. Dowell & O’Keeffe 2012 • Discrimination: • Ethical (fairness), Clinical (arbitrary, forces premature diagnosis), Legal (? in breach of Fed/State Disabilities Discrimination Acts 1991/2), Political (advocacy lobbies)
Discrimination by Diagnosis Mc. Dowell & O’Keeffe 2012 • Suggest 7 steps to fairer system (including above two). • Tools for measuring functional impairment e. g. : – Adaptive Behaviour Assessment System (Harrison & Oakland 2003) – Children’s Global Assessment Scale (CGAS) (Schaffer et al 1983) – Child & Adolescent Functional Assessment Scale (Hodges et al 1996)
Limited ASD Diagnostic Stability • Woolfenden et al. A systematic review of the diagnostic stability of autism spectrum disorder. Res Autism Spectrum Dis 2012 – Large variation in outcome studies – Some studies showed up to 53% of Asperger’s Disorder and PDD-NOS later moved off the spectrum
Primum Non Nocere
Side Effects of Diagnostic Label • Labelling Theory re mental illness (Thomas Scheff 1960 s) • Modified Labelling Theory (Link et al 1989, 1999) – Public-stigma, self-stigma, reduced expectations, selffulfilling prophecy, erroneous treatment • “Adolescents who self-labeled (as mentally ill) reported higher ratings on self-stigma and depression, and a trend toward a lower sense of mastery” (Moses 2009) • The “Pygmalion Effect” (Batstra & Frances 2012) • Loss of “Aspie” label with DSM-5 • Where appropriate = diagnostic labels helpful, vital • Borderline cases – cost vs benefit?
Labels and Understanding
Learning Intentions • Understand criteria for ASD diagnosis and changes over time. • Consider what factors could be driving an increase in ASD diagnoses • Appreciate the complexities of childhood communication, emotional and behavioural problems in terms of co-morbidities, equifinal symptom endpoints and the biopsychosocial model. • Consider fair methods of allocating precious education, health and welfare resources.
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