Autistic Spectrum Disorders
(ASD) in Later Life
Moderators:
Elizabeta B. Mukaetova-Ladinska
Ian Stuart-Hamilton
Cardiff 22.06.2011
Aims:
• Review the ASD perspectives in relation to
demographics, relative carers experience,
residential care needs
• Requirement for new specifically designed
cognitive assessment tools
• Understanding brain aging in ASD
Structure of the workshop
• 10 min questionnaire re ASD and ageing
• Ian: 10 min presentation on middle aged ASD
people
• Elizabeta:10 min presentation on ageing in ASD
• 20 min discussion in smaller groups plus 10 min
plenary, or 30 min open discussion on ASD
topics.
• Autism not a common diagnosis until the 1960s
• ASD not a common diagnosis until the 1990s
• What happened to all the people with ASD born
pre-1990s?
Source: Stuart-Hamilton, Griffith, Totsika et al. (2009)
• Assuming a conservative incidence rate of 0.6%,
in Wales:
• High proportion of children identified
• 15% of 20-40 year-olds
• Practically zero over-forties
Extrapolated from: Supporting People with Autism Through Adulthood
(National Audit Office, 2009)
• GPs estimated number of new patients with ASD
over six month period:
• Out of avg. 1500 patients aged 16-60, thought they
saw 2.
• Actual figure probably 9.
• Circa 120,000 people of working age with
undiagnosed ASD.
Source: PsychInfo
• >26,000 research papers on ASD in last 10
years
• <20 study older adults and most of these single
case studies
• Study conducted was intentionally selective and
is preliminary.
• Recruited very high functioning adults with ASD
who were computer literate.
• Also interested in those who were undiagnosed
but thought they might have ASD.
Formal Diagnosis
No Formal Diagnosis
n
14
15
Mean Age
48.50
46.87
Mean EuroQol
Health
50.29
58.67
Mean K6
Psych. Distress
19.14
17.07
Mean AQ
32.64
27.47
No sig. diffs. between groups, but all scores above clinical threshold.
Category
General
UK Pop.*
Formal
Diagnosis
No Formal
Diagnosis
Mobility
No problem
Problem
90
10
64
36
75
25
Self-Care
No problem
Problem
96
4
79
21
94
6
Usual
Activities
No problem
Problem
90
10
43
57
56
44
Pain/
Discomfort
No problem
Problem
74
26
42
58
56
44
Anxiety/
Depression
No problem
Problem
81
19
21
79
19
81
No sig differences between FD & NFD groups
Sig difference (2(df=4) = 76.788; p<.001) between ASD gp and general population
* From Kind, Dolan, Gudex and Williams (1998)
Conclusions:
• Even in the very highest functioning people with
ASD, there are serious problems
• Little difference between formally diagnosed and
non-formally diagnosed
• The symptoms are real, present, and potentially
life-shortening
Elizabeta’s slides
ASD: Demographics
• Substantial change in demographics in
XXI century
• By 2026y in UK 1.7 million elderly adults
with will need some type of 24h care
• At least 1% of them will be on the ASD
spectrum
• How many of them will be undiagnosed
ASD and high functioning Asperger?
ASD in elderly: Current situation
1%
?
Undiagnosed ASD
?
Services:
Social, clinical,
care services
Education
Ageing and ASD: Current state
• Very limited research!!!
• How to diagnose an elderly with ASD?
• Elderly ASD referred due to affective disorders
(anxiety/depression), cognitive and/or physical
problems (James et al, Int J Geriatr Psychiatry,
2006)
• 1:3 elderly will develop dementia - no data regarding
ASD
• Case reports re Alzheimer’s disease, Vascular
(Naidu et al, 2006, James et al, 2006) and
Frontotemporal lobe dementia (Mukaetova-Ladinska
et al, unpublished) in ASD
• No large scale studies conducted to date
And in clinical reality….
• Elderly people with ASD (not diagnosed)
admitted on medical wards
• NCL Liaison OAP team: elderly ASD with
behavioral problems (‘bizarre behavior’,
anxiety, aggression, memory problems,
suicidal ideation, serious suicidal attempts)
• Mental capacity assessments (facilitating
communication)
Examples - David
• 84y man, with failing mobility over last 5 years.
Expecting a an elective hip surgery
• Retired academic, living alone, in ‘regular’ touch with
family (‘once in 2 years’), no social contacts, limited
contact (over telephone) with carr taker
• Decided to take his own life one Saturday am, after
waking with pain. Left a massage re his plan on
daughter’s answer-phone, and wrote 3 letter (and posted
them)
• Run hot bath, and ‘wasted time’ on choosing the right
knife, and had superficial neck wounds.
• Not depressed, worried re caretaker finding blood in his
home.
• Family provides history of longstanding ‘odd behavior',
having rituals, being rigid and anxious.
Publications on ASD
Mukaetova-Ladinska et al, Int J Geriatr Psychiatry. 2011 in press
How ASD subjects age:
20 years outcome for ASD adults
IQ test results Childhood
Adult 32.5
7.2 y (3.1-25.9y) (22.3-46.4y)
Nonverbal IQ
87.68 (65-115)
89.09 (57-144)
Verbal IQ
78.72 (51-114)
89.10 (51-139)
Full scale IQ
83.68 (36-137)
88.93 (50-140)
IQ scores: substantial improvement in 33%,
loss in 23%.
Farley et al, Autism Res 2009
How to identify those that will improve?
How are they going to age?
Cognitive changes in elderly
(64±7years) high functioning ASD
Impairments in sustained attention, working memory and fluency,
Geurts and Vissers: J Autism Dev Disord. 2011 in press
How to diagnose ASD in older
adults?
Clinical diagnosis
Clinical problems:
•
•
•
•
Lack of collateral information
Lack of developmental history
How to diagnose ASD in elderly?
What are the consequences of misdiagnosing ASD
for psychosis and affective disorders for the ASD
individuals and their families?
• Impact of overlooking ASD in treatment of serious
medical conditions
• Are the clinical tools adequate for the elderly
population? (elderly have higher score. Ray: ‘The
right answer is…’)
• Dilemma of non-verbal communication in elderly
ASD?
Clinical diagnosis of ASD in older
adults
• Autism Diagnostic Observation Scale (ADOS) – adapted
for use in older adults (Brugha et al, 2009; Bastiaansen
et al 2010)
• Diagnostic Interview for Social and Communication
disorders (DISCO) (Wing et al, 2002: designed for all
age spectrum, needs to be validated for older adults
• Autistic Spectrum Quotient (AQ; Baron-Cohen et al,
2005) AQ-20 used in older adults (Brugha et al, 2011)
• Empathy Quotient (EQ, Baron-Cohen et al, 2005)
• Friendship Questionnaire (Baron-Cohen et al, 2003)
Imaging to aid diagnosis of
ASD in older adults?
Increase in white matter in ASD differentiate
them from controls (adults and children)
(voxel-based meta-analysis)
Radua et al, Psychol Med. 2011 Jul;41(7):1539-50.
Diffusion tensor imaging shows widespread
white matter compromise in autism spectrum
disorder (children and adolescents
Shukla et al, J Child Psychol Psychiatry. 2011 Mar;52(3):286-95.
Age-related temporo-parietal cortical
thinning in ASD
ASD vs. C
ASD>17 years vs. ASD<17 years
Wallace et al, Brain. 2010 Dec;133(Pt 12):3745-54.
Cortical changes in ASD adults (40-69years)
ASD>C
(excess pattern)
ASD<C
(negative pattern)
Ecker et al, J Neurosci. 2010 Aug 11;30(32):10612-23.
Topics
• Do older people with ASD provide us with
challenges different from older people with
other atypical conditions?
• Should we be searching for older people
with ASD or just leave things as they are?
• If we had the resources, what form would
a service for older people with ASD take?
Conclusions
Is ageing in ASD an important
clinical problem?
• Clinical management is an imperative:
assessments for mental capacity, cognition,
mental health issues are a common reason for
referrals to liaison OAP services, that lead to
clinical diagnosis of ASD.
• Addressing medical health problems adequately
• ? Clinical expertise to treat elderly ASD
• ? Educating professionals
• Enhancing communication with ASD individuals,
their families and carers,and service providers
• ? Service provision
Workshop recommendations for
improving health and social care for
older ASD adults (Newcastle 2009)
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ASD in later life - AWARES, the All Wales Autism Resource