Richard Mills

1
Autism Spectrum Disorders in the High Security
Hospitals of the United KingdomA summary of two
studies Issues for policy makers, clinicians
and service providers

• Richard Mills
• Director of Research
• The National Autistic Society
• April 2006

2
Content of presentation

• The Special Hospitals
• The original study
• The follow up study
• Prevalence
• Discussion
• Issues for policy makers, clinicians and service
  providers
• Appendices

3
Location of the Special Hospitals of England
Rampton Hospital Notts, 449 patients
predominantly psychopathic disorder
Ashworth Hospital Merseyside, 472 patients
predominantly mental illness and psychopathic
disorder
Broadmoor Hospital Berks, 390 patients
predominantly mental illness
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The Special Hospitals

• Criteria for admission
• Suffering from mental disorder and subject to
  detention under the Mental health Act
• Requiring treatment in conditions of high
  security
• Not exclusively offenders

5
Background to original study

• Growing interest from forensic/Special Hospitals
  sectors - 1994 Joint Seminar - 1994 Scragg
  Shah Study - 1994 Reed Report
• Assumptions about large numbers in Special
  Hospitals
• Growing public profile of Autism/Asperger
  Syndrome - concerns about offending in a
  minority
• Need for such a study advocated
  (Baron
  Cohen-1988, Mawson, Grounds Tantam 1985)

6
Prevalence of Offending Behaviour in Asperger
Syndrome

• Scragg Shah (1994)
• 1.5 - 2 Broadmoor population compared to 0.64
  general population
• Tantam (1998)
• Secure Hospital (3.3)
• Isolated offences (44.4)
• Criminal offences (23)

7
The first NAS study

• Funded by the UK Department of Health
• National Autistic Society Study Team
• Dougal Julian Hare, Clinical Psychologist, NAS
• Judith Gould, Director of the Centre for Social
  and Communication Disorders, NAS
• Richard Mills, Director of Services, NAS
• Lorna Wing, Consultant psychiatrist, NAS

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The First NAS study

• STAGE 1
• Literature review
• Visits to Special Hospitals
• Approvals Clearance, security confidentiality,
  ethical
• Finalise methodology

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The First NAS study

• STAGE 2
• Distribute questionnaire / Analyse data
• Establish reliability/validity
• STAGE 3
• Examine case notes
• Review reliability/validity
• REPORT

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• Screening questionnaire for Asperger syndrome
• (Nylander and Gillberg)

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Intended Outcomes

• Identify numbers currently resident
• Raise awareness of their needs
• Develop strategies and set up appropriate
  services within the Special Hospitals and
  elsewhere
• OTHER OUTCOMES
• Identify areas worthy of future study
• Understand nature of offences/reasons for
  admission or continued detention

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Additional information

• Epidemiological data on index offence
• Mental Health Act status
• Primary psychiatric diagnosis
• Psychological/ neuropsychological assessment
• Additional reliability/validity measures
  (Ferriter et al)

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Results
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Initial Screening

• Ashworth Hospital
• Total number of patients screened 455 (-17)
• Percentage of population 96.4

• Broadmoor Hospital
• Total number of patients screened 390
• Percentage of population 100

• Rampton Hospital
• Total number of patients screened 449
• Percentage of population 100

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Patients Scoring 5 Above on the Screening
Questionnaire
Ashworth Hospital Number of patients scoring 5
above 77 Percentage of total for hospital
16.9
Broadmoor Hospital Number of patients scoring 5
above 76 Percentage of total for hospital
19.7
Rampton Hospital Number of patients scoring 5
above 100 Percentage of total for hospital
22.3
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Following Case Note EvaluationPreliminary
Findings
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Neurological conditions
18
Study 1 conclusionReasons for Admission (
Special Hospitals M/F overall)
19
Primary diagnosis
20
Study 1 Circumscribed interests, repetitive
routines and obsessional behaviours
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Reliability

• All of those identified by Scragg and Shah study
  picked up
• False negatives investigated by independent team-
  women under reported
• Case notes of 26 of sample with scores of 5 or
  more scrutinised
• Disagreements none between autistic and not
  autistic groups

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conclusion

• Post case notes and interview

• 1. Of 215 cases scoring 5 or over on
  questionnaire
• 31 Definite ASD
• 31 Uncertain cases

• 2. Of the ASD group
• 29 Male
• 2 Female

• 3. Mean age of ASD group
• 38.3 Years (21-66 years)
• No significant difference with Special Hospital
  overall

• 4. Length of detention
• ASD group 11.53 Years
• Average Special Hospital 8.5 Years (Taylor
  1998)

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Prevalence

• Total screened- 1305 (96)
• Score 5 cut off point for further investigation
• 215 followed up- 21 discharged-1 died
• Of the follow up group
• 31 definite ASD (2.37)
• 31 uncertain cases (2.37)

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Type of Autistic Spectrum Disorder

• Asperger Syndrome 21 (66.6)
• Autism (not AS) IQ 50 4 (13.3)
• Autism severe learning disabilities IQ lt 50
  6 (20)

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Summary of issues Study 1

• Smaller numbers than forecast
• 2.37 Definite Autistic Spectrum Disorder based
  on criteria used (ICD10)
• Differences noted in offending patterns - low
  level of sex related offences- risk of re
  offending high
• Figures probably (as a result of methodology) an
  underestimate, particularly in respect of women
• ASD group stay longer than non ASD ( by an
  average of 3.03 years)

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• Study 2
• Autistic Spectrum Disorders in the
  female population of one special hospital

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The second NAS study
Follow up the first study Focus on the women at
one Special Hospital

• National Autistic Society Study Team
• Juli Crocombe, Consultant Psychiatrist, Care
  Principles
• Richard Mills, Director of Research, NAS
• Lorna Wing, Consultant Psychiatrist, NAS
• With Margaret Orr, Consultant Forensic
  Psychiatrist,
• Broadmoor Hospital

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Study 2 A study of the female population of
one special hospital

• Why this Study?
• Follow up of earlier study. NB Screen did not
  pick up women who had been referred to
  researchers for clinical reasons (LW and RM)
• Particular problems for management and treatment
  within the special hospital setting.
• Identified by Special Hospital medical staff as
  timely

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Aims of Study 2

• Establish the prevalence of Autistic Spectrum
  Disorders within the female population of one
  Special Hospital
• Identify issues for diagnosis, assessment,
  treatment and management

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Method- Study 2

• Two stage
• Stage 1
• Screening of entire female population (Nylander,
  Gillberg 2000) determination of subjects to
  progress to stage two
• Stage 2
• Standardised diagnostic interview (ASDI Gillberg
  et al, 2001) with staff who knew patient very
  well
• Review of clinical records and history
• Patient interview and assessment

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Results 1

• Stage 1
• 51 subjects screened on screen (9 questions)
• 14 subjects scored yes - at least 3 questions
• 2 subjects scored maybe - at least 3 questions
• 1 subject scored yes - 2 questions maybe to
  2 questions
• 1 subject scored yes -2 questions maybe to
  1 question
• 32 subjects no to all questions
• 18 subjects progressed to second stage.

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• The Asperger Syndrome (and high functioning
  autism)
• Diagnostic Interview (ASDI)
• Gillberg C

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• The Asperger Syndrome and high functioning
  autism
• Diagnostic Interview (ASDI)
• Gillberg C

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Results 3

• ASDI no of categories met by subjects
• 6 categories met by 5 subjects
• 5 categories met by 5 subjects
• 4 categories met by 2 subject
• 3 categories met by 2 subjects
• 2 categories met by 3 subjects
• 1 category met by 1 subject
• 0 categories met by 1 subject

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Study 2 the womenprimary reason for admission
36
Study 2 the womenPrevious diagnoses and MHA
classification(A denotes diagnosis on
admission) (x indicates later diagnoses)
1 definite ASD 2- probable ASD 3 Equivocal
cases refused interview discharged before
interview
37
Recorded diagnosis and classificationof ASD and
uncertain group on admission
38
Other diagnoses during stay
39
WomenCircumscribed interests, repetitive
routines and obsessional behaviours
40
Women Neurological and other physical conditions
41
Women total patients 51Conclusion
42

The Informal Test of Social Know How

• Rate the following behaviours
• How would others see this?
• A. Fairly normal in that situation
  
• B. Rather strange in that situation
• C. Very eccentric in that situation
  
• D. Shocking behaviour in that situation

From Dewey M. Living and working with able
autism and Asperger syndrome In. Autism and
Asperger Syndrome Frith U (Ed) 1991, Cambridge
University Press
43
In the elevator

• Charlie 23 had been out of work for several
  months. On this
• day his hopes were high because because he was on
  his way
• to apply for a job that seemed just right for
  him.
• As he rode up in the elevator a stranger said
  pleasantly
• nice day isn't it ( )
• Just then Charlie happened to see his reflection
  in a mirror
• near the elevator buttons. His hair was sticking
  up and he had
• no comb with him.
• He turned to the friendly stranger and said
• may I borrow your comb please? ( )

A. Fairly normal in that situation
B. Rather strange in that situation C. Very
eccentric in that situation D.
Shocking behaviour in that situation
44
In the park

• Keith age 27 was a file clerk who worked in an
  office in the city. At noon he took lunch to a
  small park and sat on a bench to eat it.
• Often he tore part of a sandwich to bits,
  scattering it on the ground for the pigeons ( )
• One day a baby carriage was parked next to
  his bench with a crying baby in it. A woman was
  swinging an older child nearby but did not hear
  because the swing was squeaking. Keith had learnt
  that babies sometimes cry because a nappy pin had
  come undone.
• Rather than bother the mother Keith
  
  quickly checked the baby to see
  
  if he could feel an open pin (
  )

A. Fairly normal in that situation
B. Rather strange in that situation C. Very
eccentric in that situation D.
Shocking behaviour in that situation
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In the supermarket

• The supermarket where Robert regularly shopped
  had a sign that
• said BARE FEET PROHIBITED BY LAW. One day while
  shopping,
• Robert saw a pretty girl, around his age enter
  the supermarket.
• She was wearing a long skirt but no shoes. ( )
• Robert wanted to warn her but was afraid to
  approach her as
• strange things tended to happen when he talked to
  girls
• Finally he decided to follow close behind her
  with his cart shielding
• her feet from the store manager ( )
• She eventually arrived at the checkout that said
  10 items or less.
• She had 12 items in her basket ( )
• The girl then turned to Robert and said,
• I dont know why you're following me but
• if you dont go away I will call the police ( )

A. Fairly normal in that situation
B. Rather strange in that situation C. Very
eccentric in that situation D.
Shocking behaviour in that situation
46
Diagnosis
47
Conclusion studies 1 and 2
48
Discussion

• Study 2 confirms underestimate of females
• Presence of ASD should be considered when
  assessing offenders with social and communication
  problems
• Both studies confirm an under diagnosis of ASD
  schizophrenia and PD more likely to be diagnosed
• Scatter of autism symptoms across the groups
  but social impairment the key factor in diagnosis

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Discussion

• Early developmental history important for
  diagnosis
• ASDI useful with staff who knew patient well-
  More sensitive instrument needed to pick up on
  instinctive social responses, especially in the
  absence of EDH (e.g. development of Informal Test
  of Social Know How ?)
• What are the organisational and clinical issues
  in providing a specialist service for this group
  within a Special Hospital?

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Issues for policy makers, clinicians and service
providers

• Diagnosis of ASD in complex cases and females
  requires special attention
• Core features of ASD stable over time
• High rates of co morbidity
• Medication for core condition not effective
• Legal issues

51
Issues for policy makers, clinicians and service
providers

• Treatment of co morbidities and reduction of
  anxiety a key feature of intervention and risk
  management
• Facilities and interactions important
• Individuals with ASD stay longer in secure
  settings - Need for more specialist move on
  facilities
• Size of gap in level of security between
  Special Hospital and next step
• Need for continuing informed follow up and support

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• In how many cases would early diagnosis (in
  childhood) have prevented offending behaviour
  e.g. bullying?
• How far are specific cognitive characteristics
  linked to specific risk of offending?
• How far is diagnosis the key to effective
  intervention, risk assessment and aftercare?
• How many would still remain resistant to all
  known interventions?
• Are the Special Hospitals the only solution for
  some?

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In appreciation

• With sincere thanks to all of the patients and
  staff who gave so generously of their time
• Special thanks to Dr Margaret Orr for
• her advice and support throughout
• the second study

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• Thank you
• Richard Mills
• Director of Research
• The National Autistic Society
• Richard.Mills_at_nas.org.uk
• Tel [phone]

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• Not to be reproduced without permission
• National Autistic Society
• 2006