adult autistic spectrum diagnostic service - the...
TRANSCRIPT
Adult Autistic Spectrum Diagnostic Service - the
importance of diagnosis and some complex cases
September 2018
Dr Trevor Powell Consultant Clinical Neuropsychologist
Berkshire HealthCare NHS Foundation Trust
Content
• Context - BHFT’s adult ASD/Asperger’s diagnostic service
• Adults different - survey of last 100 clients
• Research study: ‘Adults’ experience of ASD diagnosis’
• Complex cases and effect of ASD diagnosis
Einstein quote
• https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcQkS0NXTmNrsQjcEHfq9V8vnTTxQlNlsuEQ0pO8M-o87RMcdRM1
Background to BHFT Adult ASD service
• PCT ‘two for price of
one’ – Autism Act 2010 CQUIN - Referrals – trickle .. stream ..flood. 16 month waiting list – 300 referrals a year
• Housed within Neuropsychology, in a Mental Health/ Community Trust
• heterogeneous, diverse group – 35y – 40% female – 40% FE/employed –57 % MH – 1-1.4% of pop
30
70 100
120
180
250
300
Department of Neuropsychology
Acquired Brain Injury
RBH – Inpatient rehabilitation
RBH – outpatient rehabilitation
BHFT – OP
CBNRT
ESD
ASD/Asperger’s
Diagnostic Assessment
Post diagnosis 6 week course –
‘Being Me’
Training supervision
Very limited psychological
therapy
ADHD
Diagnosis and Assessment
Post diagnostic psychoeducational 8
week course
Medication –titration monitoring
Training and supervision Limited psych therapy
We are very small compared to others!
• BHFT’s Asperger’s/ASD clinical team of qualified diagnosticians ( 1.5 wte). Clinical Psychology 0.8 wte, Speech and Language therapist 0.6 wte, Psychological therapist 0.1
• Other services in SW (2017): Somerset 3.6 wte, Wiltshire 3.8, Bristol 8.9, Devon 2.5, Somerset 2.9, Gloucester 2.6, Berks 1.5. Average 3.5 wte
• Waiting list 16 months -160 (national problem)
Types of Referrals – must have impact!
1. Mental health and legal/special issues – stress - Prioritised - clarification diagnosis- treatment. Often misdiagnosis – ‘female presentation’
2. Late-in-life – stresses – Relationship, work, mental h – personal understanding: “I just want to know” . Tell my mother it wasn’t my fault”
3. Young people in transition – structure - school University - support. Young men: “you cant stay in your bedroom for the rest of your life”
7
After diagnosis – what next? Network
• Information/Advise/ – sign-posting
• Post diagnostic group – ‘Being Me’ – 6 week course (2 hours) - follow up self help group
• IAPT/talking Therapies – network of supervision - very limited psych therapy
• We train, run workshops for others BHFT clinicians
8
Last 100 referrals to the clinic – June 2018 1. Age
(Mean =
35.5)
18-25
29%
26-45
46%
46-70
25%
2. Gender Male
60%
Female
40%
3. Referrer GP
43%
From within Mental health
57%
4. Diagnosis ASD/Asperg
71%
Uncer traits
8%
No diagnosis
21%
5.Prev Psy
Therapy
(adult)
Psy therapy
MH involve
69%
No psych therapy as adult
31%
Demographics of those given a diagnosis of ASD
1. Employment Empl/ educ
55% (tec)
Unemploy’
43%
Other
2%
2. Relationship In relation
37%
No relation
48%
Not recorded
14%
3. Child with
dia/susp ASD
Yes diagnosis
21%
No not recorded
79%
4. Diagnoses
other than Anx
& Dep
Diagnosis EUPD/BPD
13%
Psychosis/B
i-polar,schiz
12%
(ADHD,
dyspraxia etc.)
16%
5. Education Special 10% Normal 49%
Higher 41%
ASD
Anxiety
Depression
Psychosis bipolar
Eating Disorder
Complex Trauma/ Abuse
Personality Disorder/ Emotional regulation
Learning Disability
Dyslexia Dyscalculia
Tourettes
Dyspraxia/ Executive
functioning difficulties
ADHD/ADD
ASD and comorbidity
Definitions • Persistent deficits in (1) social communication
and social interaction and (2) restrictive, repetitive patterns of behaviour, interests or activities’. DSM - V
• ‘Autism’ comes from Greek word "autos,"
meaning "self.“…. difficulty seeing others perspective
• ‘The autistic brain is highly wired in the areas involved with attention to detail, memory and systematizing - like an eight lane motorway. But, in areas concerned with the social and emotional world, the connections are like country lanes’.
What is autism?
It is a neuro-developmental
disorder/difference Is highly heritable
It manifests in each person
differently Diagnosed through
observations of behaviours
Autism is lifelong
and pervasive
Autism Is Invisible
Executive
Functioning
Difficulties
Common areas of difference
Social Communication &
Interaction differences
Sensory
Differences
Fixed Interests
Love of Routine
and Rigidity
Common mental health misdiagnoses
• Diagnosing Borderline Personality Disorder (BPD) or (EUPD) for females with ASD – similarities but differences
• Diagnosing Schizophrenia for males who have a ‘transient psychosis’ or paranoia
• Diagnosing ‘Learning Disability for someone with ASD with an uneven cognitive profile – might have executive skills difficulties, dyslexia or dyscalculia
Research paper
Powell, T & Acker, L (2016) Adults’ Experience of an Asperger
Syndrome Diagnosis: Analysis of its Emotional Meaning and Effect on
Participants’ Lives
Focus on Autism and Developmental Disabilities vol 31 (1) 72 -80
Research study: Aim and demographics
• Aim: How participants to new AS diagnostic clinic (2012-13) felt about their diagnosis and in what ways it effected their lives.
• 74 out of 108 returned feedback forms (69%) – 3 months post diagnosis
• Average age 36 years old (M = 51%: F = 49%)
• Questionnaire study
• Mixed Quantitative and Qualitative
• Open free text questions about ‘emotional meaning’ and ‘effect on life of diagnosis
• Thematic content analysis
Main Themes of Qualitative Content Analysis
• Relief
• Positive feelings
• Mixed feelings
• Negative feelings
• Non Clear feelings
• Diagnostic disappointment
Qualitative Themes: Emotional reaction • Theme 1: ‘Relief’
– Word ‘Relief’ appeared 70% of full diagnosis group
• ‘Immense relief … gratitude
• ‘relief to hear it is not my fault’
• ‘relief not to be labeled a “weirdo’
• ‘relief to be able to make sense of a lot of things in my life
• Theme 2: ‘Positive feelings’
• ‘I was happy … pleased’
• ‘I feel validated …
• ‘the diagnosis has liberated me’
• ‘I feel more empowered’
Qualitative Themes: Emotional reaction • Theme 3: Mixed feelings
• ‘Relieved but daunted’ • ‘Angry and sad that it wasn’t picked up earlier • ‘Relieved at first but now realising how difficult it can
be’ • ‘Relieved but feels like confirmation that I’ll never be
normal’ • Theme 4: Negative feelings (> younger people)
• ‘If it’s 1 in a 100, why does it have to be me? I’m annoyed’
• ‘ I was shocked. I didn’t expect to have it’ • ‘It’s a bit depressing - confirmation that I will
never feel ‘normal’ or will not ‘get better’
Qualitative Themes: Emotional reaction
• Theme 5: No clear feelings
• ‘Don’t know how to feel about it’
• ‘I’m unable to label my feelings
• ‘I’m not bothered’ - But relatives say - ‘it’s important for us to know what’s going on …because some of the family just think he’s arrogant and lazy’
• Theme 6: Disappointment at not getting diagnosis
– 33% of subclinical threshold: felt disappointed that no full diagnosis came out
• ‘I hoped for clarity… I was disappointed not to get a clear diagnosis’
• ‘It leaves me in no man’s land stuck in limbo’
Qualitative Themes: ‘Effect on Life’(1)
– Gaining understanding and explanation – (expressed in 83% of responses)
• ‘it puts the pieces together in my mind’ :
• ‘helps because it explains so much …I reflected on my past’
• ‘like the lights being turned on’
• ‘answered 50 years worth of questions’
• ‘Now I know why I have struggled with social situations all these years
Qualitative Themes: ‘Effect on Life’ (2)
• Feeling better about myself because I know its not my fault
• ‘In a very real sense the diagnosis has validated my life
and made me able to accept that I’m not just a failure with a large IQ’
• ‘I am more content with myself because I know its not my fault’
• ‘I don’t have to spend so much time trying to fix myself’
• ‘It has stabilized my mental health’
Qualitative Themes: ‘Effect on Life’ (3)
• Support
• ‘It helped me get study support at University’
• ‘It opened the way for tangible gains … benefits’
• ‘… work must now make reasonable allowances’
• ‘ ‘I’m concerned about a lack of support’
• Social interactions – both positive and negative
• ‘work understands me more know’
• ‘My family understands me more now’
• ‘My boyfriend treats me differently now’
• I’m more aware of being scrutinized
Conclusions from research
• Most common emotional reaction -‘Relief’(70%) + ‘mixed feelings’
• Positive effect on lives - ‘understanding and explanation’, (85%) an alternative to self blame’. ‘Life changing’, ‘stabilises mental health’
Greg – ASD ‘buried’ under history of drugs, crime, mental health difficulties
• Behavioural problems at school from age 5, taken into care, - symptoms included, ‘prone to social misunderstandings, often accompanied by persecutory ideation … speech mumbled, tangential, difficult to understand’. Poss ASD at 15 but no diagnosis
• Then 10 year history of drug/alcohol abuse, 25 criminal convictions, forensic history, more recently diagnosed with paranoid schizophrenia, in PPH. Involved with EIP team
Greg - ‘everybody knows the secret’
• Greg explained his paranoia saying “I feel that everybody is out to get me… perhaps I read things the wrong way. I think that everybody has this secret where they know things that I don’t know and I can’t understand what the secret is.”
• Link of paranoid idea with difficulty understanding people - the secret that other people have is how the world works, paranoia can take on a psychotic dimension. The PRIMARY problem is ASD. Greg said, ‘it’s the foundation … its been brushed aside’
Letter to Ann last week (1)
• I wanted to write and thank you enormously… I am about to start a new job that I chose with reference to your recommendations and, for the first time in my life, feel confident that I will have an occupation that isn't harmful to me. The job is a Lectureship in Actuarial Science at the University of … I will have about 8 contact hours with students a week and the rest of my work will be self-determined in my own private office where I can control the lighting… etc.
Letter to Ann last week (2)
• Although being told that I likely had Asperger's was a relief, it was also a shock and I went through a difficult couple of months emotionally. The diagnosis felt like a life sentence and crystallised my feelings of not knowing who I was - if I've been "pretending to be normal" all my life, who am I? With time, however, things have improved substantially. Implementing lots of sensory techniques has made a huge difference to my mental health
Letter to Ann last week (3)
• I have become an avid knitter…I carry a muslin bag of coffee beans around with me and a little bottle of frankincense essential oil. I go nowhere without my sunglasses and pink noise. When I am overwhelmed by something I remind myself it's just a meltdown rather than some sort of neurotic attention-seeking behaviour, which makes it easier to forgive myself.
• Anyway I just wanted to say thank you for a life-changing diagnosis and for giving me the tools to find a healthy job and get the support I need.
Jackie: Psychological therapy and the purpose of a diagnosis
“I’ve wasted so much time having psychological therapy for over 20 years … I never felt I had BPD …there are a lot of naïve, unhelpful therapists. My present therapist, who is one of the better ones, believes I can change and be more comfortable socially and take on greater challenges if I keep trying and doing my homework. I don’t believe that. I want somebody to tell me, ‘I am as I am’ – it’s hard wiring of my brain. Its not my fault. I want to wear ear plugs. Once somebody tells me that, I think I can live with it better”
Conclusion 1 – Effect of ASD diagnosis
• For client : Diagnosis brings ‘relief’, ‘positive feeling’, ‘validation’, ‘reduces self blame’, ‘understanding and acceptance’,
• Mental health/ therapy/treatment : Clarify best treatment options – ‘stabilises mental health’, ‘don’t have to keep trying to fix it, shift to acceptance of who I am’. Saves money on inappropriate treatment. Often therapy based on misdiagnosis, e.g. BPD, EUPD, (particularly female presentation) Schiz. Modify environment if in hospital
Conclusion 2 – Effect of ASD diagnosis
• Education – improve opportunities once recognise ‘disability’ – executive skills difficulties (subtle) – in exams - tailor appropriate support – academic, social
• Employment – people keep jobs, work with strengths, ‘reasonable adjustment’, find better suited jobs. Report summary – conscientious, detail
• Relationships benefit – understanding and acceptance, realisation they are ‘not just being awkward’. Within family – better understanding if child has ASD – strengthen strong, weaken weak?
Thank You