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Adults on the autism
spectrum: their
health and
healthcare PROF NICK LENNOXMBBS, BMEDSC, DIPOBST, FRACGP, FASID,PHD
North QLD PHN
5:20 - 6:00 PM 09/07/16
The plan
What is autism spectrum disorder in adults
Definition & Diagnostic certainty
Prevalence & Aetiology
What we know of adult health and healthcare
What we don’t know and what the Autism CRC is doing about it
What do you do about severe chronic behaviours of concern
Lessons from when I have failed to deliver good healthcare
Some tips and resources
What is autism
spectrum disorder in
adults
WHAT’S IN A NAME
DEFINITION
DIAGNOSTIC CERTAINTY
Temple Grandin
What’s in a name ??????
Early infantile Autism
Autistic Person
Autism Spectrum Disorder
ASD
Person on The Spectrum
Asperger’s syndrome - “Aspie”
Neurodiversity
Neuro typicals Hans Asperger
1944 Described children with
Lacked nonverbal communication,
Limited understanding of others feelings
& clumsy
Leo Kanner
1943 Landmark paper
Early infantile Autism
Diagnostic and Statistical Manual of
Mental Disorders, 2013 (DSM-5)
DSM-5 unified autistic disorder, Asperger’s disorder, childhood
disintegrative disorder, and Pervasive Disorder Not Otherwise
Specified into one diagnosis called ASD.
Conceptualizes ASD primarily as a social-communication disorder.
ASD may be primarily characterized by differences in information
processing.
Ref: Nicolaidis, C., Kripke, C.C., Raymaker, D.M. (2014)
Primary Care for Adults on the Autism Spectrum
Medical Clinics of North America. 98;1169-1191.
ASD Not a linear spectrum of low or
high functioning
Skills or challenges fall along spectra on multiple axes
e.g. spoken language, written communication, activities of daily living,
need for consistency, sensory sensitivity, emotional regulation.
A patient with no spoken language may be able to read and write
at a graduate level and an individual who speaks fluently may
have profound learning disabilities.
Within each axis, skills and challenges can
change depending on environmental
stimuli, supports and stressors.
Diagnosis – Do not rely on
stereotypes
Autistic traits - both strengths & challenges
Some autistics - great expertise in their areas of special interests
Not all autistic individuals have stereotypically positive traits,
such as memorization or computation skills.
Not always avoid social interactions
Empathy
“cognitive empathy” (understanding another person’s perspective)
On average lower than non autistic individuals, BUT many score in the normal range.
“affective empathy” (an observer’s emotional response to the affective state of
others) Autism is likely not associated
Formal Diagnosis in adults – risks
and benefits
Clinicians should discuss risks & benefits of referral for formal diagnosis
E.g.
Referral can be challenging, as many autism specialists lack experience with adults
Process can be stressful
Possible legal ramifications such as custody battles
Diagnostic evaluation should draw on a variety of sources, including
standardized diagnostic instruments e.g. Autism Diagnostic
Observation Schedule (ADOS).
ASD characteristics in adultsA. Persistent deficits in social, communication & social
interaction across multiple contexts
(Diagnosis requires person meets all three criteria.)
1. Deficits in social-emotional reciprocity
e.g. Tendency to monologue without attending to listener cues.
2. Deficits in non-verbal communicative behaviours used for social interaction
e.g. Lack of eye contact; difficulty understanding non-verbal communication.
3. Deficits in developing, maintaining, and understanding relationships.
e.g. Challenges adapting behaviour to match different social settings and greater
than usual need for time alone.
ASD characteristics in adultsB. Restricted, repetitive patterns of behaviour, interests, or
activities
(At least two of four criteria)
1. Stereotyped or repetitive motor movements, use of objects, or speech
e.g. Repetitive movements or “stimming”
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behaviour
3. Highly restricted, fixated interests that are abnormal in intensity or focus
e.g. Intense special interests
4. Hyper- or hypo reactivity to sensory input or unusual interest in sensory aspects of the environment
e.g. to sounds, lights, smells, or textures; having an abnormally high or low pain threshold
Assistive and augmentative
communication (AAC) technology
Variable in ability to communicate especially at times of stress
Referral may be useful even if it has been tried in the past
Can be useful even when able to communicate verbally
Examples
Low tech – writing or letter board/ photographs/symbols
High tech text to speech /picture based devises/symbolic devices
Prevalence &
Aetiology
~ 1%
Increasingly diagnosed BUT not clearly increasing in prevalence
Aetiology
Strongly genetic
Evidence comes from studies of twins, family genetics & molecular genetics
Hundreds of molecular genetic associations have been found
Not yet clear which genes are necessary and sufficient to cause which type of autism
Autism is not 100% genetic
Estimates of heritability - 40 to 90%
Leaves influence for gene-environment interaction but environment factors yet
unknown
E.g. possible factors include foetal sex steroid hormones & social training/experience
Ref: NICE Guidelines – AUTISM RECOGNITION, REFERRAL, DIAGNOSIS AND MANAGEMENT OF ADULTS ON THE
AUTISM SPECTRUM, National Clinical Guideline Number 142, 2012
Mortality
2-3 x age/sex matched general population
High risk – severe & profound intellectual disability; epilepsy & being
female
E.g. SUDEP, accidents (suffocation & drowning more common); others
Secondary to difficulties in recognising and reporting signs and
symptoms, AND Access to health care
Ref: Nicolaidis, C., Kripke, C.C., Raymaker, D.M. (2014)
Primary Care for Adults on the Autism Spectrum
Medical Clinics of North America. 98;1169-1191.
Comorbidity: Epilepsy
Epilepsy (20-30%)
First seizure often in adolescents
Misdiagnosis possible due to tics, inattention, emotional outbursts and stereotyped movements
OR missed because of calming repetitive movements, atypical
facial expressions, or unusual behaviours can be confused with
seizure spells
Comorbidity: GIT & Metabolic
GIT problems
gastroesophageal reflux, constipation, and food intolerances are commonly reported
Be wary of cough may be secondary to swallowing problems & aspiration
Feeding and Nutrition
Secondary to dental disease, GORD or dysphagia
Sensory sensitivities can be problematic
Lack of awareness of hunger or managing cooking / shopping
Metabolic syndrome
Appears to be common
Comorbidity: Sleep, Violence &
Abuse
Sleep disturbance
Persist as child ages & Associated with behaviour problems, respirator, visual
impairment & psychiatric conditions
Melatonin - effective in some autistic people & favourable side-effect profile.
Dose 1 to 10 mg orally 30 minutes before bedtime.
Nonpharmacological approaches, such as sleep hygiene - may be effective.
Violence, bulling and Abuse
Both men and women more likely to experience violence & victimization
Comorbidity: Anxiety & Depression
Anxiety
Children 13% generalised, 8.5% separation anxiety & associated more
demanding/ poorer relationships
In youth 40% anxiety disorders
Depression & suicide
Almost certainly more common (~30%)
www.aaspire.org
Many of our recommendations arise from our National Institute of
Mental Health–funded project with the Academic Autism Spectrum
Partnership in Research and Education (AASPIRE, www.aaspire.org)2
to develop a health care tool kit for autistic adults, their supporters,
and their PCPs (http://autismandhealth.org),
Accommodations for successful physical
examinations, tests & procedures.
Explain what is going to be done
Show the patient equipment before using it, of If possible, let the
patent do a “trial run”
Tell the patient how long an examination/procedure is likely to take
Warn the patient before touching or doing something
Extra time
Allow to sit, lie down, or lean on something during procedures
Ask the patient if he or she is able to handle the pain or discomfort
There may be times when patients need anaesthesia to tolerate
examinations or procedures.
What we don’t know
and what the Autism
CRC is doing about it
What we don’t know and what the
Autism CRC is doing about it
About 1% research is on adults
Change during adulthood in some autistics
In Intellectual Disability & Autistic population evidence for applied behavioural analysis
Looks at function of the behaviour or what it is communicating
Considers ecological setting, past learning, skill training to maximise autonomy & choice making
Evidence drawn largely from studies in children
CBT approach in children & adolescents with anxiety & depression
We are testing Acceptance & Commitment Therapeutic approach (ACT) in adults
What we don’t know and what the
Autism CRC is doing about it
Also tool developed to maximise integration into the work place
Specific work places – selected because of positive attributes
Emotional recognition training
Autism CRC
Hope to get a better understanding of what helps to maximise
health care through health hub and co design
http://www.autismcrc.com.au/health-hub
What do you do
about severe chronic
behaviours of
concern?
Luke
25 year old
ASD & Epilepsy
Increasing injurious behaviour to self & others
Meds
risperidone 1.5 mg BD, Epilim ED 500mg twice a
day, Vitamin D, Probiotics
Recent minor changes in staff at day service
Variable implementation of behaviour plan
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“Behaviours of Concern”
Actually of ALARM
What to do - Back to basics
Be highly suspicious of the environment
abuse, neglect & indifference are rife
Focus on environment – communication & predictability
Check for any change any suggestion of a physical
illness
“Over examine” “over investigate” Abdominal X-Ray
Dental care ? GERD
“Behaviours of Concern”
Insist on a Behavioural or Functional Assessment &
that support staff follow it!
Double check for any suggestion of a mental
health issue - ? Depressed ?BPAD
? Get psychiatric assessment
“Behaviours of Concern” - Medication
Often approached at the end of the process with a
request for medications
Little research evidence for use of major tranquillisers in
adults
Used extensively in paediatric population
MAJOR CONCERN
Obesity and metabolic syndrome
Osteoporosis
Other side effects – sedation, hypotension etc.
Managing severe behaviours of
concern – Medication???
Do baseline lipids, BP, ECG, serum prolactin, Dental
review
Minimal effective dose - Start low and go slow
No ideal medications – many start with SSRI
Largely a therapeutic trial
Record data continuously
Risk of side effect e.g. metabolic syndrome & hyper
prolactinaemia
Working with disability organisations
Insist they provide
Accurate accessible information
Meet their duty of care
Use practice nurse as a conduit
Go up higher if you are having problems
The family are superior sources of information
Something strange goings on - SUSPECT ABUSE
from neglect to sexual and physical abuse
Things that may help on
the journey
Target Behaviours (please define) Rating Scale (Number of times the Target
(Behaviours occurred)
A. …...………….......………… Not at all: 0
B. ………………......………… Some: 1 (define ............................)*
C. ………………......………… A lot: 2 (define .......................….)*
* Staff to collectively agree on the definitions for: ‘some and ‘a lot’ in regards to the target behaviours
Date: insert date across the top of each chart
QCIDD Behaviour Recording Schedule
Name: Year: _________
Date
A
B
C
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1 2 3 4 5 6 7 8 9 10 1
1
1
2
1
3
1
4
15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31
Jan
Feb
Mar
Apr
May
Jun
Jul
Aug
Sep
Oct
Nov
Dec
QCIDD Seizure chart Name: Year:
Seizure type
A ……………………………… B ………………………………
C……………………………… D ………………………………
Insert A, B, C or D for each seizure
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Edx - Massive Open Online Course (MOOC)
World’s best universities MIT, Harvard, Berkeley & UQ
Conclusion
Autism is complex & multi dimensional
On going development of understanding in all areas
Biomedical to conceptualisation of the experience and social context
Many ways you can help people on the spectrum
Understanding & respectful inclusion
Changing you behaviour & the environment
Getting the co morbid diagnosis right
Grasping the task and understanding you may be the best person to help
Tread lightly with medications & make services do what they say they do
Research program
• 1993/5 - Survey of GPs & Psychiatrist
– Barriers & Enablers to care
• RCTs1999/2003 - CHAP health check - adults
2000/2005 - A&H - Ask diary & CHAP - adults
2003/2004 - Risperidone trial - adults
2006/2010 - Ask diary & CHAP - adolescents
2007/2012 - RCT Passport to health – ex-prisoners
2014/2017 - Autism CRC
• Key area now – health checks,
health promotion, corrections, education.47
