UTILITY OF AN AUTISM DIAGNOSIS

Maria Qureshi

Overview

• General introduction & definitions

• Critique of main research paper

• Outline of my project

Pervasive Developmental Disorder

• A group of disorders characterized by qualitative abnormalities in

– reciprocal social interactions – patterns of communication, – restricted, stereotyped, repetitive repertoire of interests and

activities.

• These qualitative abnormalities are a pervasive feature of the individual's functioning in all situations.

(ICD-10, 2007)

Autism

• A type of pervasive developmental disorder defined by:

– The presence of abnormal or impaired development that is manifest before the age of three years

– A behavioural syndrome, defined by a triad of observable difficulties with

• social interaction, • Communication • flexibility of behaviour (restricted, stereotyped, repetitive

behaviour and limited imagination)

(ICD-10, 2007 & American Psychiatric Association, 2000).

High functioning Autism

• No formal diagnosis or definition

• Specifies individual on the autism spectrum

• Sometimes refers to Pervasive Developmental Disorder - Not Otherwise Specified

• Mild form of autism

Asperger’s syndrome

• A type of pervasive developmental disorder similar to autism, characterised by

– Abnormalities of reciprocal social interaction– Restricted, stereotyped, repetitive behaviours

• Differs from autism primarily in the fact that there is no general delay or retardation in language or in cognitive development.

(ICD-10, 2007)

Utility• Literally means usefulness

• First et al (2004)– ‘Clinical utility is the extent to which the DSM assists clinical

decision makers in fulfilling the various clinical functions of a psychiatric classification’

• Pertinent questions for judgements about clinical utility are– what are the components of usefulness, benefits, and drawbacks; – how might we define and measure these factors; – how should they be weighed against one another;– usefulness and relative benefit for whom?– (Smart 2006)

Framework Analysis

• Qualitative method of analysis

• In the analysis, data is sifted, charted and sorted in accordance with key issues and themes using five steps:

– familiarization; – identifying a thematic framework; – indexing; – charting; – mapping and interpretation. – (Srivastava & Thomson 2009)

“LABELS ARE FOR CANS, NOT PEOPLE”

Anthony Rapp

CRITIQUE OF MAIN RESEARCH PAPER

High Functioning Autism and Asperger’s Disorder: Utility and Meaning for Families

McSharry, Pistrang, & Mandy, (2010)Currently awaiting publication

Background information

• Clinical utility (as defined earlier) is often measured

• Little is known of the perceived advantages and disadvantages to children with the PDD diagnosis and their parents

• Findings from previous studies give a mixed picture

Aim

• Using qualitative methodology to explore directly the utility of a diagnosis for children with a PDD and their parents

• Learn from participants about their perceptions of the value of having distinct Autism and Asperger's labels

Method

• Participants:– 10 families (Parents & child with diagnosis)– Young people aged 9 – 16 years old

• Semi structured interviews (parents and child interviewed separately)

• Interview schedules created to cover topics relevant to the aims of the research but also allowing for flexibility to explore other topics that may arise

Results

• Interviews recorded and transcribed

• Analysed using Framework approach

• All families spent years pursuing a diagnosis for their child

• Decided by parent independent of child’s wishes

Themes

• Advantages of diagnosis

• Limitations of diagnosis

• Autism vs. Asperger’s disorder – usefulness of distinction

Advantages of diagnosis

• 3 broad themes identified:

– Bringing understanding

– Access to practical support

– Empowering parents

Brings understanding

• Parents felt they understood their child better, which they saw as the most important outcome of the diagnosis

It actually makes you accept the child as they are and try to work with them rather than trying to change them into something they’re not.

• Diagnosis helped other people understand child's behaviour in public

... he’s still hard work for me, but I think I’m more relaxed about it because I know I can say ‘well, he’s Asperger's’ and the people will say ‘oh’ and I won’t have that locking horns with

them all the time.

• Young people more concerned with the help they received at school

Apparently when my primary school found out I had Asperger's syndrome they were like dancing; they were like ‘Yay, we know what’s wrong with him now, we know what to do with

him and sort it out!’

Practical support• Diagnosis helped child gain support they needed

The autism support worker for the council got involved at that stage as did the chairman of the board of special educational needs for the borough and they all

supported his diagnosis and worked with the school to make sure that all his needs were met.

• “Opened doors” and enabled access to specialist services

I believe the label, although it has got its negativity, has a great underlying support network which is only accessible through that label.

• Only 1 young person identified the extra support they received

I get more help at school and stuff

Empowerment

• Alleviated parent’s worry that they were the cause of their child’s condition.

• Lead to less self-blame and greater self confidence

It was what we knew in the back of our minds all these years; it was just someone saying ‘look, you’re right, you’re not neurotic, you’re not a bad mother’.

Limitations of diagnosis

• 3 broad themes identified:

– Failure to effectively communicate young person’s needs

– Limited information diagnosis provided about an individuals strengths and difficulties

– Stigma

Diagnoses ineffective as communication• Diagnosis improved understanding for parents and family but did not

enhance the self-knowledge of the young people being diagnosed

• Most young people interviewed expressed indifference about their diagnosis

I’m not that interested [in the meaning of the diagnosis].

• They also did not have a sense of its broader meaning

It means you find it hard to make friends because I find it hard to make friends.

• Diagnosis sometimes failed to convey effectively an understanding of their child’s difficulties to others, where people held a stereotyped understanding of autism

I don’t think there is any understanding or acceptance of autism in the mainstream.

• Nearly all parents felt that the diagnosis had not served as an effective enough communication of their child’s educational needs and failed to meet their expectations especially with local services

[The hospital] introduced us to a circle of people and I thought she was going to get that help there and then they wrote and said now she’s got the diagnosis it has to happen at your end and we didn’t get anything at

our end at all.

Provides limited information• Diagnosis on its own provided limited information about their child.

• Utility of the diagnosis was limited by the heterogeneity of presentations that fall under the labels of AD and AsD

Sometimes I mix with mothers of children with the same diagnosis and their children are in special schools but they’ve got the same label. I find that hard to

understand. I look at their child and think they’re nothing like my child; I can’t see any similarities but they’ve got the same diagnosis.

• Only 1 young person identified problems with their label

I don’t do a lot of Asperger's but I do some of it.

Stigma• Parents avoided discussing diagnosis with child

We don’t want to load him down with a label and although it’s important to have a diagnosis we don’t want him thinking that he’s got to wear this badge all his life.

• Parents felt the diagnosis made people treat their child differently

… the people that know [about the diagnosis] treat him differently. Other children if they know what he’s got can be a bit unkind.

• Young people also worried about being treated differently

Students act differently because they know I’m autistic, they’re like ‘he’s the weird kid’.

Autistic disorder vs. Asperger’s disorder: usefulness of distinction

• 3 broad themes

– Uncertainty regarding distinction

– Indifference to distinction

– Valuing individual labels

Uncertainty regarding distinction

• Parents felt Autism and Asperger's were very similar and interchangeable terms

I think that Asperger's and autism are exactly the same thing. I can’t see why there’s a difference at all.

• Young people also reported they did not think there was a difference between autism and Asperger’s

I’ve always heard [Asperger's] was the same thing as autism, I thought they were the same thing.

Indifference to distinction• Parents did not mind which label their child was given as long as they had

some label

It’s just a label really. [My son] would be the same boy whatever label you attach to him

• 1 parent felt combining the 2 labels might be unhelpful and could reduce understanding

To lump the two into the same category just seems unfair to [my son]. In that respect I wish there were more categories because [he’s] got mild Asperger's as opposed to full-blown Asperger's; there should be some special word for him, for

just purely on the social side.

Valuing individual labels

• Some parents felt Autism is better understood than Asperger’s syndrome

Being called Asperger's syndrome doesn’t give any hint that it’s on the autistic spectrum...I think that’s confusing

• Whereas some parents thought the long term prognosis for an Asperger’s syndrome diagnoses was less riddled with stigma

I think it’s probably easier for [my son] when he’s older to say he’s got Asperger's rather than autism because of what people are going to think

about it at work and things like that.

Discussion• Most participants expressed ambivalence about how useful the diagnosis had

been, identifying both advantages and limitations

• Young people found it difficult to think about their diagnosis and were keen to distance themselves from it

• Reluctance towards information gathering or telling others of diagnosis

• Fear of stigma most commonly reported by young people

• Parents reported complex and often competing beliefs about the utility of their child’s diagnosis

• Utility of diagnosis arises from the relationship between the disorders they describe and the environment

Critique

Strengths • Provides insight into

research area• Interviewed both Parents

and young children• Useful implications for

research and clinical practice

Limitations• Small sample (10 families)• Not representative of ethnic

diversity in autism diagnosis (all white participants)

• Only focus on high functioning autism

• 9 of the young people were boys

• Fathers under-represented (only 3)

• Young people did not engage with study

• Was framework approach best method for analysis?

DEVELOPING A MEASURE OF THE UTILITY OF AN AUTISTIC SPECTRUM DISORDER DIAGNOSIS

Supervised by Dr Will Mandy

Aim

• To develop a questionnaire/scale to quantitatively measure utility of an Autism diagnosis

• Purpose of measure is to answer question of whether parents and young people are likely to perceive a net gain after receiving their PDD diagnosis

• Measure could be used clinically to monitor outcomes and change over time

• Help identify limitations in support services

Proposed methodology

• Literature search and review to identify further themes

• Create questionnaire based on themes arising from past research

• Administer questionnaire to test reliability and validity

Questions• Questionnaire

– Parents only?– Young people with diagnosis only?– Both?– Should it be limited to young people only or can be used by adults to

identify gaps in service provision?

• Diagnosis– High functioning autism?

• If parents only:– Self-measure of utility?– Measure of parents perceived utility for child?

Developing a scale

• Identify themes• Devise items• Create scaling responses• Measure reliability• Measure validity• Administer

• (Streiner & Norman, 1995)

References• American Psychiatric Association (2000) Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text

Revision. Washington, DC: American Psychiatric Association.

• First, M.B., Pincus, H.A., Levine, J.B., Williams, J.B.W., Ustun, B. & Peele, R. (2004) Clinical Utility as a Criterion for Revising Psychiatric Diagnoses. American Journal of Psychiatry, 161 (6), 946-954.

• McSharry, L. C., Pistrang, N., & Mandy, W. P. L. (2010). High Functioning Autism and Asperger's Disorder: Utility and Meaning for Families. Unpublished Manuscript, UCL.

• Smart, A. (2006). A multi-dimensional model of clinical utility. International Journal for Quality in Health Care, 18 (5), 377 – 382.

• Streiner, D. L., & Norman, G. R. (1995). Health Measurement Scales: A practical guide to their development and use (2nd ed.). New York: Oxford University Press Inc.

• Srivastava, A. & Thomson, S. B. (2009). Framework Analysis: A Qualitative Methodology for Applied Policy Research. Journal of Administration & Governance , 4(2), 72 – 79

• World Health Organisation (2007). ICD-10 Classifications of Mental and Behavioural Disorder: Clinical Descriptions and Diagnostic Guidelines. (Chapter V: Mental and Behavioural disorders, Disorders of psychological development). Retrieved 27th January 2011 from http://apps.who.int/classifications/apps/icd/icd10online/