Changes to the autism diagnostic criteria - a discussion

The forthcoming National Autistic Society Autism Professionals Conference 2019 features a panel discussion on changes to the diagnostic criteria in both the ICD-11 and DSM-5. Three of the panellists give us their views on how they think these changes will impact on professionals and autistic people.

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Authors: Dr Carole Buckley, Dr Sarah Lister-Brook, Zandrea Stewart

Changes to the autism diagnostic criteria - a discussion

Dr Carole Buckley – GP; Clinical champion for Autism, RCGP

Autism is a complex condition which seems to get more complex the more we know about it. For a general practitioner (GP) this makes it harder to fully understand all the different ways it may present.

As a GP I welcome the changes in diagnostic criteria. They are more inclusive and easier to understand than previous derivations. Gone are the intimation of different disorders or differing severity inherent in a name but not reflected in the autistic individual. Stereotyping of autism and assumptions about ability that have been linked to diagnostic names like Asperger’s syndrome, are often unhelpful. Specialist services have sometimes been inconsistent in their terminology and diagnosis which is troublesome for generalist clinicians.

The autistic profile is varied, both within and between individuals. If the GP is clear about what the term means then it will be easier to ensure adequate recording of a diagnosis in electronic medical records, along with a “flag” of the reasonable adjustments needed, to ensure equitable access to health services.

I am also fairly certain that this will not be the last change we see in diagnostic criteria. If you look at the history of autism since the 1940’s the changes have been both welcomed and progressive but there is still more to know and understand.

Dr Sarah Lister Brook - Clinical Director, NAS Lorna Wing Centre

The changes within the DSM 5 criteria for autism are largely positive, presenting a dimensional approach to defining and assessing autism, and they therefore embrace the idea of a spectrum of conditions as opposed to categories or sub-types of autism. The collapsing of the criteria into one social-communication dimension has also helped clinicians move away from having to deliberate over whether or not a presenting issue is a social or a communication difficulty when considering the criteria, which can often feel quite unhelpful as these two things are inextricably bound. 

That said however, the DSM 5 retains an algorithmic model whereby the individual has to satisfy a required number of criteria in combination with each other in order to reach the threshold for a diagnosis. In practice this has presented difficulties for individuals with subtler communication difficulties, particularly with regard to their non-verbal communication. To meet the threshold on this dimension can be difficult if you are someone who has learnt to develop non-verbal strategies to compensate - this is often seen in females where they can be very good at social mimicry but in contrast are less able to decode non-verbal signs. 

The WHO ICD 11 criteria are in draft form and are available for review on the WHO website. The changes here have also encouraged a more dimensional approach and there is less concern about sub-types of autism and more of a focus on differentiating between autism in association with varying levels of language and cognitive functioning. The draft ICD- 11 system has not set out criteria using specified algorithms to derive a diagnosis, but are more in the spirit of guidelines to help clinicians consider the diversity of clinical presentations. I think that within communities of clinicians and those seeking an assessment this will be very empowering.

Zandrea Stewart - National Autism Programme Task and Finish Group Chair (DHSC)

From my experience social care professionals are conscious that autism is a spectrum and as such autism spectrum disorders (ASD) or autism spectrum conditions (ASC) are terms already frequently used. Whilst I do not see a major change for professionals in social care, I do think that there will be a need for greater clarification and understanding of any additional needs an individual may have, for example mental health or learning disability.

It will be important upon diagnosis and referral for assessment that any other diagnoses are included, in order to ensure that any assessment of need is undertaken from a person-centred perspective and assumptions around someone’s ability is not made. 

Equally it will be important not to automatically align autism and learning disability, as it is my understanding from the people I know who have a diagnosis of Aspergers syndrome, that they are concerned that they may be considered as having a learning disability.

Date added: 31 January 2019


Thu, 07/02/2019 - 16:39

Totally agree with Zandrea Stewart.  It may be better for clinicians to adopt a dimensional approach within DSM 5 but many parents with high functioning autistic children want Aspergers noted as a diagnosis especially when their child does not have a learning difficulty.

To many lay people(and employers)  autistic spectrum disorder can have negative connotations.