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Diagnosing Adults with
High Functioning Autism
or Asperger Syndrome

Tanya Breen
NZPsS Conference August 2011
Areas covered today
1. Background information
2. Issues for adults suspected of having HFA/AS
3. Diagnostic processes
4. Clinical experience
5. Literature, information, support & resources for
   professionals
6. Post diagnosis support
Autistic disorder or autism
 Pervasive developmental disorder characterised by
 impairment in:
   Social skills
   Communication skills
   Or by the presence of stereotyped behaviour and
   interests
 Delay/abnormality before age of 3 in at least one of:
 social interaction, language, symbolic/imaginative play
 High functioning autism (HFA) simply means “autism
 with an IQ 70 or above”
Asperger’s disorder
(or Asperger syndrome)

Essentially the same as autism but:
  no clinically significant impairment in langauage
  no clinically significant delay in cognitive development
  or age-appropriate adaptive behaviour
Autism Spectrum Disorder

Research indicates that after the age of 3, when IQ is
accounted for, there is no difference between people
with autistic disorder (autism) & Asperger syndrome
2008 - NZ Autism Spectrum Disorder Guideline
2013 - DSM-V will use ASD only
Basic facts
 NZ Autism Spectrum Disorder Guideline suggests that
 over 40,000 people in NZ have ASD, & most are
 undiagnosed adults
 More males than females (but this seems to be
 changing)
 Probably genetic
 Not related to MMR vaccine
 Cannot be “cured”
Issues for adults

 ASD is a lifelong condition, not only a disorder of
 childhood
 Pervasive - effects all aspects of life
 Often undiagnosed
 Diagnostic overshadowing (ADHD, depression)
 Misdiagnosed (atpical schizophrenia, personality
 disorder)
Impact varies time/situation
 Relationships (friends, partners, children, colleagues)
 Education (academic, organisational & physical
 demands)
 Work (unemployment, under-employment, income)
 Emotional well-being (self-esteem, depression, anxiety,
 abuse)
 Health (attention to needs, sensory sensitivity, epilepsy)
 Rights & responsibilities (citizenship, participation, legal
 issues)
Being undiagnosed means


Feeling different (“wrong planet”) or crazy
Being misunderstood, & often blamed unfairly
Almost constant anxiety
Isolation
Being diagnosed means
Understanding of self & by others
Finding a peer group
Learning how to manage impact of symptoms
Getting the right help
Relief to some, shock to others
“Congratulations It’s Asperger Syndrome” Jen Birch
2003 www.aspergers.co.nz
"Beyond diagnosis: Welcome to the autism spectrum"
ASK Trust 2011 www.asknz.net
But ...

 Few formal or funded pathways for diagnosis exist for
 adults without an intellectual disability or not “in trouble”
 Mental health services lack relevant experience &
 training
 Private practitioners lack skills &/or confidence
 The experience of adults seeking diagnosis is too often
 one of being fobbed off, referred on, or poorly served
Reason for today’s
presentation
Help you increase your skills
Increase your confidence
Increase the number of psychologists willing/able to
conduct these assessments
Improve life experiences of adults with HFA/AS
Please put your name and contact details on the list!
Diagnostic assessment
See NZ ASD Guideline & www.asdguideline.com
Multidisciplinary gold standard, but sole practitioner
possible (supervision & peer support essential)
Methodical
Match complexity of assessment to reason for referral:
  Curiosity vs. Trouble
  Legal vs. Clinical
  Referrer / payee
Assessment components
Detailed health, developmental & behavioural history
Pattern of skills, disabilities & behaviours
Comprehensive file review (transitions, peer relations)
Medical evaluation (health sometimes neglected)
Direct evaluation (interview &/or observation)
IQ & other cognitive sills (not all geniuses)
Adaptive functioning (Vineland ABS-2 has ASD norms)
Mental health (multiple diagnoses, disagreement)
Assessment components                            (ctd)


Neurological assessment (epilepsy)
Communication & audiology (hearing, body language)
Sensory, motor & perceptual (sensitivity)
Vision
Occupational & physical therapy
Social competence
Family resources & needs
Consideration of co-morbid & co-existing conditions
What do I do?

Minimum: interview the person, observe how they
respond in meet/greet & interview, administer screens
or self-report tests
Medium: as above, plus interview significant others &
review historical documents
Comprehensive: as above, try to cover or have covered
all apects on previous slides, & use “gold standard”
tests like the Autism Diagnostic Interview - Revised
Self report measures

Asperger Questionnaire (Baron-Cohen)
Empathizing & Systemizing Quotients (Baron-Cohen)
Physical Prediction Questionnaire (Baron-Cohen)
Friendship Questionnaire (Baron-Cohen)
Social Situations Questionnaire (Baron-Cohen)
Theory of Mind tests (various)
Gold standard tests

Autism Diagnostic Interview - Revised - trainers in
Australia, one NZ workshop
Autism Diagnostic Observation Schedule - as above
DISCO - often used in other countries - no training has
occurred in NZ
NZ ASD Guideline updates: www.asdguideline.com
Differential diagnosis

 More obvious symptoms:
   Obsessive interests (find out in advance, time them)
   Communication skills (reciprocal conversations)
   Social skills (meet & greet observation, small talk)
   Unique and deep topics of conversation
 But similar/same symptoms occur in many other
 disorders (OCD, social phobia, psychoses, ADHD)
Differential diagnosis (ctd)
 Look for what was/is missing (a.k.a. behavioural
 deficits):
   Joint attention, sharing interests & pleasure
   Responding to social cues
   Giving (and needing) comfort
   Recognising emotions in self and others
   Subtle emotions (rather than extremes)
 If these present in early childhood, ASD more likely
Clinical cases

 Brian, 30s - engineer, married, some relationship
 issues, son recently diagnosed with ASD, recognition
 of symptoms in Brian’s behaviour - ASD confirmed


 Sally, 40s: long mental health history, multiple
 diagnoses, professional disagreements, interventions
 had little of no effect, repeated offending despite more
 serious consequences - ASD confirmed (e.g. the line)
Clinical cases (ctd)
 Albert, 70s: retired farmer, adult children, wife saw
 article on ASD on “Sunday”, suspect ASD is reason for
 marital problems - ASD excluded


 George, late 20s: charged with very serious offence
 against a person, referral “role of ASD in offence?”,
 long history of antisocial and criminal behaviour,
 historically autism diagnosed after 1 hour consultation,
 - ASD not confirmed
Key autism journals

 Autism
 Autism Research
 Focus on Autism and Other Developmental Disabilities
 Research in Autism Spectrum Disorders
 Journal of Autism and Developmental Disorders
Other helpful journals

 Mental Retardation and Developmental Disabilities
 Research Reviews
 Journal of Intellectual and Developmental Disability
 Journal of Intellectual Disability Research
 Journal of Applied Research in Intellectual Disabilities
Information, support &
resources for professionals
 Altogether Autism www.altogetherautism.org.nz
   National contract for ASD information provision
   Expert searching of Internet (17/8/11: 81,400,000
   Google hits for autism &14,100,000 for Asperger)
   Tailor made information packages (including reading
   lists, recommended texts)
   Access to clinical consultant & team of ASD experts
   ASD Provider Database (please put names on list)
   Circulates information on training
Information, support &
resources for professionals
 Ministry of Health sponsored website on ASD
 recognition & referral www.asdguideline.com
 Research Autism - website aimed at anyone people
 with ASD, parents & carers, service providers and
 policy makers. Big, up-to-date, & scientifically reliable
 www.researchautism.net
 Autism New Zealand bookshop and library
 www.autismnz.org.nz
 Werry Centre training, ADI-R & ADOS workshops
Post diagnosis support

 Learn about ASD & how it affects the individual & family
 Hard copy information
 Information on ASD (books and first person accounts,
 reputable websites, You Tube, science & facts)
 Networking with other people with ASD (national and
 international websites, ASD organisations)
 Contact Altogether Autism for an information pack
Thank you & questions
Tanya Breen
Consultant Clinical Psychologist
tanya@tanyabreen.co.nz


Clinical Consultant, Altogether Autism
tanyabreen@altogetherautism.org.nz


Please put your name on the list!

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Tanya Breen, Diagnosis HFA AS

  • 1. Diagnosing Adults with High Functioning Autism or Asperger Syndrome Tanya Breen NZPsS Conference August 2011
  • 2. Areas covered today 1. Background information 2. Issues for adults suspected of having HFA/AS 3. Diagnostic processes 4. Clinical experience 5. Literature, information, support & resources for professionals 6. Post diagnosis support
  • 3. Autistic disorder or autism Pervasive developmental disorder characterised by impairment in: Social skills Communication skills Or by the presence of stereotyped behaviour and interests Delay/abnormality before age of 3 in at least one of: social interaction, language, symbolic/imaginative play High functioning autism (HFA) simply means “autism with an IQ 70 or above”
  • 4. Asperger’s disorder (or Asperger syndrome) Essentially the same as autism but: no clinically significant impairment in langauage no clinically significant delay in cognitive development or age-appropriate adaptive behaviour
  • 5. Autism Spectrum Disorder Research indicates that after the age of 3, when IQ is accounted for, there is no difference between people with autistic disorder (autism) & Asperger syndrome 2008 - NZ Autism Spectrum Disorder Guideline 2013 - DSM-V will use ASD only
  • 6. Basic facts NZ Autism Spectrum Disorder Guideline suggests that over 40,000 people in NZ have ASD, & most are undiagnosed adults More males than females (but this seems to be changing) Probably genetic Not related to MMR vaccine Cannot be “cured”
  • 7. Issues for adults ASD is a lifelong condition, not only a disorder of childhood Pervasive - effects all aspects of life Often undiagnosed Diagnostic overshadowing (ADHD, depression) Misdiagnosed (atpical schizophrenia, personality disorder)
  • 8. Impact varies time/situation Relationships (friends, partners, children, colleagues) Education (academic, organisational & physical demands) Work (unemployment, under-employment, income) Emotional well-being (self-esteem, depression, anxiety, abuse) Health (attention to needs, sensory sensitivity, epilepsy) Rights & responsibilities (citizenship, participation, legal issues)
  • 9. Being undiagnosed means Feeling different (“wrong planet”) or crazy Being misunderstood, & often blamed unfairly Almost constant anxiety Isolation
  • 10. Being diagnosed means Understanding of self & by others Finding a peer group Learning how to manage impact of symptoms Getting the right help Relief to some, shock to others “Congratulations It’s Asperger Syndrome” Jen Birch 2003 www.aspergers.co.nz "Beyond diagnosis: Welcome to the autism spectrum" ASK Trust 2011 www.asknz.net
  • 11. But ... Few formal or funded pathways for diagnosis exist for adults without an intellectual disability or not “in trouble” Mental health services lack relevant experience & training Private practitioners lack skills &/or confidence The experience of adults seeking diagnosis is too often one of being fobbed off, referred on, or poorly served
  • 12. Reason for today’s presentation Help you increase your skills Increase your confidence Increase the number of psychologists willing/able to conduct these assessments Improve life experiences of adults with HFA/AS Please put your name and contact details on the list!
  • 13. Diagnostic assessment See NZ ASD Guideline & www.asdguideline.com Multidisciplinary gold standard, but sole practitioner possible (supervision & peer support essential) Methodical Match complexity of assessment to reason for referral: Curiosity vs. Trouble Legal vs. Clinical Referrer / payee
  • 14. Assessment components Detailed health, developmental & behavioural history Pattern of skills, disabilities & behaviours Comprehensive file review (transitions, peer relations) Medical evaluation (health sometimes neglected) Direct evaluation (interview &/or observation) IQ & other cognitive sills (not all geniuses) Adaptive functioning (Vineland ABS-2 has ASD norms) Mental health (multiple diagnoses, disagreement)
  • 15. Assessment components (ctd) Neurological assessment (epilepsy) Communication & audiology (hearing, body language) Sensory, motor & perceptual (sensitivity) Vision Occupational & physical therapy Social competence Family resources & needs Consideration of co-morbid & co-existing conditions
  • 16. What do I do? Minimum: interview the person, observe how they respond in meet/greet & interview, administer screens or self-report tests Medium: as above, plus interview significant others & review historical documents Comprehensive: as above, try to cover or have covered all apects on previous slides, & use “gold standard” tests like the Autism Diagnostic Interview - Revised
  • 17. Self report measures Asperger Questionnaire (Baron-Cohen) Empathizing & Systemizing Quotients (Baron-Cohen) Physical Prediction Questionnaire (Baron-Cohen) Friendship Questionnaire (Baron-Cohen) Social Situations Questionnaire (Baron-Cohen) Theory of Mind tests (various)
  • 18. Gold standard tests Autism Diagnostic Interview - Revised - trainers in Australia, one NZ workshop Autism Diagnostic Observation Schedule - as above DISCO - often used in other countries - no training has occurred in NZ NZ ASD Guideline updates: www.asdguideline.com
  • 19. Differential diagnosis More obvious symptoms: Obsessive interests (find out in advance, time them) Communication skills (reciprocal conversations) Social skills (meet & greet observation, small talk) Unique and deep topics of conversation But similar/same symptoms occur in many other disorders (OCD, social phobia, psychoses, ADHD)
  • 20. Differential diagnosis (ctd) Look for what was/is missing (a.k.a. behavioural deficits): Joint attention, sharing interests & pleasure Responding to social cues Giving (and needing) comfort Recognising emotions in self and others Subtle emotions (rather than extremes) If these present in early childhood, ASD more likely
  • 21. Clinical cases Brian, 30s - engineer, married, some relationship issues, son recently diagnosed with ASD, recognition of symptoms in Brian’s behaviour - ASD confirmed Sally, 40s: long mental health history, multiple diagnoses, professional disagreements, interventions had little of no effect, repeated offending despite more serious consequences - ASD confirmed (e.g. the line)
  • 22. Clinical cases (ctd) Albert, 70s: retired farmer, adult children, wife saw article on ASD on “Sunday”, suspect ASD is reason for marital problems - ASD excluded George, late 20s: charged with very serious offence against a person, referral “role of ASD in offence?”, long history of antisocial and criminal behaviour, historically autism diagnosed after 1 hour consultation, - ASD not confirmed
  • 23. Key autism journals Autism Autism Research Focus on Autism and Other Developmental Disabilities Research in Autism Spectrum Disorders Journal of Autism and Developmental Disorders
  • 24. Other helpful journals Mental Retardation and Developmental Disabilities Research Reviews Journal of Intellectual and Developmental Disability Journal of Intellectual Disability Research Journal of Applied Research in Intellectual Disabilities
  • 25. Information, support & resources for professionals Altogether Autism www.altogetherautism.org.nz National contract for ASD information provision Expert searching of Internet (17/8/11: 81,400,000 Google hits for autism &14,100,000 for Asperger) Tailor made information packages (including reading lists, recommended texts) Access to clinical consultant & team of ASD experts ASD Provider Database (please put names on list) Circulates information on training
  • 26. Information, support & resources for professionals Ministry of Health sponsored website on ASD recognition & referral www.asdguideline.com Research Autism - website aimed at anyone people with ASD, parents & carers, service providers and policy makers. Big, up-to-date, & scientifically reliable www.researchautism.net Autism New Zealand bookshop and library www.autismnz.org.nz Werry Centre training, ADI-R & ADOS workshops
  • 27. Post diagnosis support Learn about ASD & how it affects the individual & family Hard copy information Information on ASD (books and first person accounts, reputable websites, You Tube, science & facts) Networking with other people with ASD (national and international websites, ASD organisations) Contact Altogether Autism for an information pack
  • 28. Thank you & questions Tanya Breen Consultant Clinical Psychologist tanya@tanyabreen.co.nz Clinical Consultant, Altogether Autism tanyabreen@altogetherautism.org.nz Please put your name on the list!

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