Autism – The tragedy of the missed and misdiagnosed

The inspiration for this blog article came from three separate directions. First, I have noticed on many Facebook group forums that young girls have not been given a diagnosis because ‘they don’t meet the Part B criteria of the DSM 5’ or that they have never even reached the point of being assessed because they ‘seem too sociable’, display empathy, or make good eye contact.

The second struck me when I was preparing for a webinar that I am presenting with Cathie Long (a very experienced Autistic/ADHD social worker) in October.  The webinar deals with the trauma and shame associated with being Autistic and diagnosed as having an ‘emotionally unstable personality disorder’.  This is heavily featured in my new book, Autism – Missed and Misdiagnosed, Identifying, Understanding and Supporting Diverse Autistic Identities (due to be published on 21st November this year by Jessica Kingsley).  

“It very quickly became clear that it is not the individuals themselves who are complex”

When I first started writing the book, some two years’ ago, the original title was ‘Complex Presentations of Autism’, which came about because of the number of autistic young people who were deemed ‘too complex’ to assess, or support. It very quickly became clear that it is not the individuals themselves who are complex, it is the lack of understanding around any autistic presentation that does not immediately fit into the stereotypical description, like that used in the DSM 5.  The DSM 5 is one of the diagnostic manuals used by clinicians to support a diagnosis of Autism (the other is the ICD 11).   

The DSM 5 criteria for Autism is separated into two parts – social communication and restrictive and repetitive behaviours.  For a diagnosis to be made a young person must experience challenges in all the following areas:

Social communication and interaction (Part A)

• Social-emotional reciprocity
• Non-verbal communication used in social interactions.
• Developing, maintaining, and understanding relationships.

And two out of the following:

Restrictive and Repetitive Behaviour (Part B)

• Unusual patterns of movement or speech
• Sameness of routines and rituals
• Highly focused interests
• Sensory sensitivities 

Often, it is the Part B criteria which are more difficult to quantify, especially for girls.  They may prefer sameness and routine, but if they are heavily masking and trying to fit in, these will often be less apparent and in addition, they tend (and this is a generalisation, and there are always exceptions) to have fewer very fixed interests.

Unfortunately, though, if these young people are missed when they are younger, there can be significant problems when they get older.  The latest statistics for the number of autistic young people currently in inpatient services is scarily high, and rising.  The majority of autistic patients under the age of 18 who do not have a learning disability are female.  The most common reason for admission is depression and/or suicidal ideation.  A growing number are also being admitted to eating disorders units.

“First, personality disorder should never be diagnosed in teenagers”

Many of these girls will, at some point during their admission, have it suggested (or formally added to their notes) that they are displaying signs of Borderline, or Emotionally Unstable Personality Disorder.  This is disturbing for many reasons.  First, personality disorder should never be diagnosed in teenagers – they are still developing and personality, amongst many aspects of their presentation, is evolving.  Second, it is a highly stigmatising diagnosis which puts all the emphasis on the person, and none on the environment that has caused it. Many of these girls have experienced years of feeling different, of being bullied and rejected, and made to feel that there is something ‘wrong’ with the way they are.  It is hardly surprising that this manifests itself in extreme distress. 

This leads me to the third reason for writing this article.  There are still an unacceptable number of young autistic girls taking their own lives whilst in inpatient services.  These are sometimes reported in the news, but for many, there is no official mention.  This makes me especially sad as I have known or worked with some of them in the past, and whilst I don’t know all the details, the tragedy is that some will have had their autism diagnosis overlooked, or even overturned, and replaced with a diagnosis of personality disorder.  This is often referred to as ‘diagnostic overshadowing’ where one diagnosis is given more attention than another, and a fundamental part of who they are is not acknowledged.

 “ … there needs to be a fundamental change in how autism is assessed.”

So, going right back to the beginning of this article – there needs to be a fundamental change in how autism is assessed.  Sticking rigidly to the criteria and failing to see the whole person is shortsighted and can ultimately be dangerous and contribute to avoidable tragedies.  It also needs to be acknowledged that constantly feeling misunderstood is traumatic and needs to be treated as such.

For those families who are just starting to explore a diagnosis for their children, or those who have already been told that their child is not autistic, it is worth noting the following examples which our experience has shown are very typical of autistic girls (and some boys, and non-binary young people).

Social communication and interaction (Part A)

• Social-emotional reciprocity – the young person may talk excessively about topics of interest to themselves.  They might not really ‘get’ the concept of two-way conversations and turn taking.  They may mimic the accent and tone of voice of other people (often copied from YouTube)
• Non-verbal communication used in social interactions – eye contact and use of gestures are often used as a diagnostic benchmark.  However, many autistic young people do use eye contact appropriately (even though it might be uncomfortable).  Gestures are often used but may be exaggerated or ‘over the top’.
• Developing, maintaining, and understanding relationships – parents may find themselves having to support or ‘scaffold’ friendships and help the young person to repair relationships when they go wrong.  The young person may quickly run out of social energy and need time alone after interacting to recover and rest.

Restrictive and Repetitive Behaviour (Part B)

• Unusual patterns of movement or speech – unusual movements are not always seen publicly, but the young person may fidget or ‘stim’ when away from peers.  Unusual accents, or over-use of certain words or phrases is also common.
• Sameness of routines and rituals – the young person may become upset if a plan changes suddenly, or repetitively question about what is going to happen next.
• Highly focused interests – these can sometimes be subtle and are often age-appropriate (for example drawing, colouring, or crafting).  There may be an interest in animals or the environment.  Make-up and hair can also need to be ‘perfect’ and will be repeated and fussed with until the person is happy.   However, a strong interest can manifest as repeatedly watching a TV show or YouTube clip or re-reading a series of books.
• Sensory sensitivities – nearly all autistic individuals will experience some degree of sensory sensitivity.  It is important to watch out for ARFID (Avoidant and Restrictive Food Intake Disorder).

Book links related to this article:

Autism – Missed and Misdiagnosed, Identifying, Understanding and Supporting Diverse Autistic Identities (Published 2023)

A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum: Diagnosis, Intervention and Family Support (Published 2017)