Understanding autism
Understanding autism

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Understanding autism

2.3 How is diagnosis carried out?

Diagnostic practice depends on the professionals involved, how they work, geographical area and country. In the UK, a school educational psychologist, GP or paediatrician may be involved in the early stages; a clinical psychologist or psychiatrist may make the diagnosis alone, but diagnosis will typically involve different specialists working as a team. An individual’s journey to diagnosis can involve problems, delays, distress and conflicting information. In the UK, most local authorities have defined procedures or ‘pathways’, that specify the process by which children suspected of having a special educational need are referred for specialist assessment and/or diagnostic evaluation. The National Autism Plan for Children (NAPC) is a UK framework containing guidelines and recommendations for good practice in relation to the identification and diagnosis of children with autism (NIASA, 2003). Pathways for adult diagnosis are less well-developed but the Autism Act (2009) has required all local authorities to develop them.

The process of assessing a child or adult usually involves a diagnostic instrument or tool, designed to ensure consistent application of the diagnostic criteria themselves. One is the Autism Diagnostic Observation Schedule (ADOS), comprising ‘modules’ for assessing children of different age groups. A trained practitioner selects the appropriate module (e.g. toys and games for age 2) and uses it to assess whether the individual has ‘age appropriate skills and behaviour’ – for instance, for a 2 year old, these will involve play, joint attention and language. The Autism Diagnostic Interview - Revised (ADI-R) comprises questions for parents about their child’s current skills and past behaviour. Alternative instruments include the Diagnostic Interview for Social and Communication Disorders (DISCO), and the Developmental, Dimensional and Diagnostic Interview (3di). Multiple tools may be used in an assessment.

Described image
Figure 1 Equipment used in the ADOS.

Activity 3 A diagnostic tool in action

Allow about 10 minutes

The following two clips feature expert Dr Amitta Shah using the DISCO in a diagnostic session with a young boy and his parents. Attending the session and providing commentary is clinical psychologist, Dr Laverne Antrobus. The interview itself focuses on the parents’ recall of their child’s early behaviour and their current concerns. As you watch the clips, note three other sources of evidence that Dr Shah says she has used in making the diagnosis.

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Transcript

NARRATOR
Dr. Amitta Shah will spend the day observing Zane, and talking with Mandy and Jason about his developmental history. She and the family have agreed that I can observe the process. It is the first time in the UK that it has ever been filmed.
AMITTA SHAH:
Which one do you think it might be?
NARRATOR:
Dr. Shah has collected all of the previous reports made on Zane by various doctors, paediatricians, and his school. She has also viewed all the videos Mandy and Jason have made of his behaviour.

[MUSIC PLAYING]

NARRATOR:
She must weigh up all the evidence before she can make a proper diagnosis.
AMITTA SHAH:
What happened at one year old? That's when he first fell?
MANDY:
Yeah, he began to scream and cry a lot.
AMITTA SHAH:
And could you establish reasons for that?
MANDY:
No
AMITTA SHAH:
Has he had a real a regression or setback? Did he start talking, and then, did he stop talking?
MANDY:
He did it with food
AMITTA SHAH:
With food?
MANDY:
I noted with the way he was eating, his skills were very, very good from the high chair, from the fingers, progressing with cutlery. And then he seemed to go back. And he became very clumsy.
AMITTA SHAH:
Oh, interesting. What day did he go clumsy?
MANDY:
About 14 months on.
AMITTA SHAH:
Where do you live?
ZANE:
I live in England.
AMITTA SHAH:
In England, but what place in England? Do you know?
ZANE:
I think I live in west park 3, It's a very nice place.
NARRATOR:
Dr. Shah's assessment is based on the internationally accepted diagnostic interview for social and communication disorders, a specially designed informal interview that helps her build a detailed picture of Zane's abilities, problems, and atypical behaviour from birth till now.
AMITTA SHAH:
Ah, it's going to come back to me, is it?
NARRATOR:
She will also make direct observations of Zane's behaviour, both as he plays and performs various specialised tasks.
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AMITTA SHAH:
Mandy and Jason, I'm now going to give you some feedback from what the assessment has shown us. It's not just based on today, but as you know, I've had a lot of reports beforehand from that paediatrician. I've seen those DVDs, the films of Zane, all those questions we asked you this morning, and then of course, meeting Zane himself has made it all very, very clear to us.
All his early behaviours and what is functioning now shows clearly, that he is on the autistic spectrum. And he fits into the subgroup of children who have Asperger's syndrome, because of the quality of his social interaction. But what he's showing is very high intelligence. And he's showing a lot of very normal sociability as well, which is very positive.
The difficulties are to do with his own frustrations, because he is extremely intelligent. And lots of people who have very satisfying lives and have a career, and so on. But the important thing is that with someone like Zane, the emotions are a little bit disarranged. And he can become anxious. He can become stressed. That's what we have to bear in mind, and actually make sure that life is arranged for him in such a way.
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Discussion

Dr Shah mentions reports from the paediatrician, DVDs and also meeting the child himself, which has enabled her to observe him directly. This integration of different evidence sources is typical of diagnostic tools for autism and is a key feature of the DISCO.

AUT_1

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