Diagnostic concerns and revisions to the DSM 5

05/04/2022 by Dr Judy Eaton Masking 0 comments

Last updated: 5th November 2024

Since the launch in March 2022 of the updated DSM-5 (now known as the DSM-5-TR), we have received a number of enquiries from people concerned about changes to the DSM-5 Autism diagnostic criteria. For those who are not aware, the DSM, (which stands for Diagnostic and Statistical Manual of Mental Disorders), is the guideline where the criteria for diagnosing Autism are written down. The DSM is the American version of the criteria, the ICD 11 (International Classification of Diseases) is the European manual, although whether Autism should be described as a ‘mental disorder’ or, worse still as a ‘disease’, is a whole other discussion in itself.

The criteria in both the DSM and the ICD guidelines include two distinct areas – Social Communication and Interaction, and Repetitive and Restricted interests (which includes sensory differences). The DSM states for part A (Social Communication and Interaction) that clinicians need to demonstrate that an individual has difficulties in the following areas:

‘Persistent deficits in social communication and social interaction ACROSS MULTIPLE CONTEXTS (the capitals are mine, to demonstrate the point I wish to make later in this blog) as manifest by the following: deficits in social emotional reciprocity and non-verbal communication behaviour used for social interaction and in developing and maintaining relationships’.

Most areas in the UK have huge waiting lists for Autism assessments

The previous version of the DSM did not specify that ‘deficits’ had to be apparent in ALL of the social communication areas. However, the DSM-5-TR now includes the word all. So why does this matter? The official line was that it was to remove any ambiguity that faced clinicians in diagnostic decision making. But I have begun to wonder, is this the whole truth? I recently saw a presentation by an American psychiatrist where he was speculating whether Autism has become overdiagnosed in the last few years. It is true that there has been a more than fifty-fold increase in diagnoses over the last thirty years or so, and currently prevalence rates are estimated at around 2.8% for boys and 0.65% for girls. Most areas in the UK have huge waiting lists for Autism assessments, with many families waiting years to be seen. I imagine this is true in other areas of the world, too. It could be seen as rather convenient for those managing waiting lists if numbers being referred for assessment suddenly dropped, but it would be disastrous for individuals and their families!

As many people will know, I have a particular interest in under- or misdiagnosis amongst girls and women (and I include some boys, non-binary and trans people within this category too), and I am struggling to see how this apparently tiny amendment to the DSM criteria is going to help this particular group of people. In truth, any experienced diagnostic team should be pretty good at identifying the, often subtle ways, in which girls meet all of the criteria. However, my big fear is that by focussing on the word ‘all’ in the Social Communication and Interaction criteria may mean that more girls will be dismissed as ‘not meeting criteria’ and this is without considering the line which states that difficulties must be apparent across ‘multiple contexts’.

Only this week I have been approached by a parent (and I know she will not mind me highlighting the issues that she and others face) whose daughter has been assessed by an experienced and well-respected team, who, despite ample evidence of Autism from multiple other sources, decided that she could not be Autistic because she did not ‘score’ highly enough on the ADOS assessment. To explain, the ADOS (or Autism Diagnostic Observation Schedule) is one of the ‘gold standard’ assessments used by many diagnostic teams across the world. It is a structured assessment of social interaction and communication, and is scored from ‘0’ to ‘3’ for each of a number of items, including making eye contact, establishing a rapport with the examiner, and the ability to maintain a reciprocal two-way conversation. A score of ‘0’ indicates no problem at all noted in that area, with a ‘3’ being given for major challenges that interfere with the assessment. Each module (there are four, which are administered according to age and language ability) has a ‘cut-off’ score, above which Autism is suspected. The higher the score, the more obvious the social communication challenges.

But here is the problem. The ADOS totally overlooks the way in which many, able autistic girls, are able to ‘mask’ their difficulties

In all the manuals and diagnostic guidelines, it makes it clear that the ADOS is not diagnostic on its own. It needs to be considered alongside other evidence and observations. But here is the problem. The ADOS totally overlooks the way in which many, able autistic girls, are able to ‘mask’ their difficulties, and how much time many of them spend watching and observing their peers, worrying about messing up an interaction and being seen as ‘wrong’ or ‘weird’ because of it. It is no surprise then that many girls fail to be picked up by the ADOS. Of course, they can hold it together for the forty minutes or so an ADOS takes to administer. Why wouldn’t they? They often spend hours perfecting this aspect of their communication. They often work so hard at masking and hiding their anxiety and frustration outside of the family home, which is where the guidelines insisting that the difficulties should be seen across ‘multiple contexts’ becomes problematic. For many Autistic people, the only place they feel safe enough to be their authentic selves is at home. Too often referrals for Autism assessment are rejected on the basis the young person appears ‘fine in school’.

This matters, because it is only the tip of the iceberg in terms of misdiagnosis. Far too many young women are still ending up in inpatient units, having experienced a breakdown, often being diagnosed with the highly stigmatising ‘Emotionally Unstable/Borderline Personality’ label. Some have had their children removed from them or have suffered such bad postnatal depression that they have experienced psychotic breakdowns.

Simply changing one word in the diagnostic criteria might seem insignificant, but it is not. Yes of course ambiguity needs to be reduced, and clinicians need to feel confident in their decisions. However, by inserting this one word into the criteria may cause clinicians to stop and think – and maybe think too much.

It might be an opportune moment to once again begin to raise awareness about how not every Autistic person fits the narrow stereotype, and how a lack of awareness and acceptance of a different neurotype, with different needs, can lead to long term and debilitating mental health challenges.

We’ve recently launched our Psychoeducation Resource Centre, which contains lots of useful information, beginning with our first guide on Autistic Masking that aims to help understand and provide tips for unmasking.

CAT-Q Camouflaging Test

The Camouflaging Autistic Traits Questionnaire (CAT-Q) is a self-report measure of social camouflaging/masking behaviours designed for people aged 16 and upwards. It is used to identify individuals who, due to their ability to mask their autistic traits, may not receive a diagnosis of autism when, in fact, they are autistic.

If you’d like to Assess if you might be camouflaging your Autism, the free test is quick, easy, and provides instant results.

LEARN MORE

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Recommended Reading

You may also be interested to know that our clinical director, Dr Judy Eaton, has written the following books on the subject of Autism:

Eaton-Autism-Missed-and-Misdiagnosed-1-1

Autism Missed and Misdiagnosed: Identifying, Understanding and Supporting Diverse Autistic Identities

by Dr Judy Eaton

Autism presents in a multitude of different and highly nuanced ways – particularly as it intersects with variance in class, gender, race and age.

Misunderstanding and misinformation around variant and differing presentations means that misdiagnosed individuals and those who do not receive a diagnosis at all are often failed by medical, education, social care and criminal justice systems. They are detained in inappropriate settings; don’t receive beneficial therapeutic input; have their families accused of fabricated or induced illness (FII); are kept in prison or youth offending institutions longer than their original tariffs, and shockingly their life expectancy is often curtailed as a result.

This comprehensive resource will help multidisciplinary professions to understand, contextualise, and better identify diverse autistic presentations. It includes an overview of the autism diagnostic process, an exploration of controversial and commonly confused diagnoses such as PDA, ODD, CD, ASPD, and BPD; discussions of best practice for investigating FII; and analysis of the specific challenges of autism diagnosis in relation to women and girls, BAME communities, schools, and the criminal justice system.

Autism Missed and Misdiagnosed amazon review

a guide to mental health issues in girls and young women on the autism spectrum book cover

A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum: Diagnosis, Intervention and Family Support

by Dr Judy Eaton

This book addresses the specific mental health needs of girls and young women with autism spectrum disorder (ASD). Looking at the ways autism presents differently in girls than in boys, and the mental health conditions that occur most frequently in girls with ASD, this is the essential guide for clinicians and educators on tailoring interventions and support to meet girls’ needs.

Describing the current assessment process for autism diagnosis, the book explains why girls are under- or mis-diagnosed, leading to later mental health issues. It outlines the types of intervention that are particularly helpful for working with girls to reduce anxiety, improve social interaction skills, and manage self-harm. The book also covers how to manage eating disorders and feeding difficulties, focusing on working with girls with sensory processing difficulties. There is advice on how to deal with the emotional impact on parents, carers and families, and the challenges they face when negotiating appropriate psychological and educational support.