My most recent book, Girls and Autism, discusses why we do not cater well for girls with autism.
For far too long, autism has been considered a male-orientated condition. Initial research by Kanner in 1943 and Asperger in 1944 was a watershed as it paved the way for diagnosis and treatment in children. However, it focused only on boys, as autism was considered a male condition. Consequently, the diagnostic framework is entirely male-centred.
As we now know, male and female brains differ; something that works for one gender is not necessarily going to be successful for the other. Using a male-dominated framework when diagnosing women often leads to issues and misdiagnosis, as it doesn’t account for their needs as women.
Until we act on how neurodiversity presents in girls, we cannot fully support them to reach their full potential. Focusing entirely on the male brain has led to a massive gap in research about autistic girls. This omission has often led to these girls lagging behind their male counterparts educationally and with far-reaching consequences.
My work focuses on the problems this lack of research continues to create for autistic girls. Girls and Autism blends academic discussion and real stories from girls living with autism to give a unique perspective about the condition and how we can all do more to support them going forward.
Girls with autism need earlier diagnosis and intervention
It may seem obvious to say this (although, in education and medicine, it has not always been the case), but it is important to consider a girl with autism as a girl first. In other words: to not only see the condition but the girl behind it. By remembering and acting on this key point, we can begin to shape the future for girls with autism and pave the way for an equal experience at school.
One key aspect of my work focuses on the ages at which these girls are receiving a diagnosis. While most autistic boys get their initial assessments between the ages of three and five, autistic girls tend to be in early adolescence before the first assessments, and a diagnosis is provided.
The impact of not catching autistic girls in early childhood is enormous. By flying under the radar for far too long, they don’t get the support they need. As a result, mental health conditions, such as eating disorders and depression, often creep in during adolescence when the child becomes aware of their neurodiversity but unable to get the support they need.
Grace Hershey, an occupational therapist specialising in child and adolescent mental health, alongside Dr Tina Rae, a senior educational psychologist, co-wrote a chapter of the book on the impact of mental health issues on autistic girls. Identifying these difficulties is a major concern when supporting these girls – as it is with boys. Crucially, though, understanding and dealing with how gender difference may present emotionally in girls must inform the process after referral to the mental health service and how that proceeds.
The diagnostic tools need improving
The importance of restructuring the way we diagnose autism is a significant part of my work. The book includes a message from co-author, Professor Francesca Happé from King’s College London, who states that the diagnostic tools we use also need to change before we can begin to adjust the way we treat autistic girls and women effectively.
We now understand that autistic girls often display a trait known as ‘masking’, where they copy neurotypical behaviours and use them in social situations. Paradoxically, it seems, girls’ innate communication abilities are one of the main reasons autistic girls do not receive a diagnosis until adolescence. Unfortunately, by this stage, a girl might first present with a mental health disorder and be referred to a specialist, where autism is finally inadvertently identified as part of the mental health assessment.
What a price these girls pay to get the diagnosis they need! And it is, in my view, an avoidable failure of our education and healthcare that should not still be happening.
The classroom needs to change
Of course, not every girl with autism will develop mental health issues, but managing their condition without sufficient support in a traditional educational setting can be very challenging. Socially too, they may struggle with relating to their peers, which can be distressing.
As a result of not responding to these gender differences, our schools and health system are better equipped to accommodate autistic males. From an educational perspective, this means that we are currently not providing the level of support needed to help girls with autism thrive in the classroom.
In addition to the major changes needed to support neurodiverse girls, we can implement more subtle things. Surroundings can often trigger autistic people. To tackle this, I have co-designed with the headteacher a new-style classroom in a school in Chaddesley Corbett in the Midlands, tailored for autistic children.
Based on research compiled over several years, I chose purple and pink tones for the room. These colours engender a positive yet unobtrusive reaction, with grey tables and fittings to produce a neutral response. The idea being that these colour combinations keep the child’s focus on the object (the desk and learning materials) rather than the surroundings (walls and floors). We have not used fluorescent lighting, as some neurodiverse children find that type of light triggering.
Although these changes appear small, they can make a big difference in improving an autistic girl’s experience in the classroom. Fortunately, alternations like these that positively change a neurodivergent child’s lesson time tend not to be noticed by their classmates.
We cannot afford more lost years
When I’m asked my motivation for writing this book, my mind goes straight back to a woman I met at the last National Autistic Society conference. I had brought along a pre-copy of my book, and she took the opportunity to browse through it. She then waited until the room had cleared before she came and told me that she was now 63 years old and had received her diagnosis of autism aged 59.
Having lived most of her life without a diagnosis, this lack of recognition and the ensuing inequality she endured made her feel like she had lost 58 years. To this woman, my book told her story. I knew then that I didn’t need any other reason for publishing it. We can all do better than that, and it is my driving force for achieving educational equality for all girls with autism.
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