Autism Spectrum Disorder, sometimes referred to as ASD, or simply just autism,
has long been underdiagnosed and misunderstood in women. Awareness of ASD is
growing, as well as the number of diagnoses, especially in women, which sometimes
leads to comments such as ‘everyone is autistic these days’, or ‘they will diagnose
everyone.’ However, there is still a significantly large gender gap between autistic
men and women, especially when it comes to the understanding and diagnosis of
the condition. Personally, I have watched many of my friends go through the long,
and pricey (especially if you choose to go private) process of getting diagnosed, just
to be misunderstood and misdiagnosed by health care officials, due to said gender
gap, leading to significant consequences in later life.
The Gender Bias in Autism Diagnosis
So, where does this gender gap come from? Historically, autism research and
diagnostic criteria have been based predominantly on male presentations of the
condition. Early studies focused on boys, leading to a stereotype of autism as a
male-dominated disorder. As well as this, autism in women, especially adult women,
is very different to autism in boys, and so of course there is a gap when it comes to
getting diagnosed, as how are we to compare adult women to a diagnostic criterion
based on male representations. As well as this, autism is harder to detect in women,
leading to more adult diagnoses. According to Autsimsa, an Australian website, the
main signs of autism in women and girls are, masking, avoiding social interaction,
being seen as shy but an as extrovert when it comes to their hobbies and interests,
and a limited number of close friendships, which can formulate into very intense
friendships, which often end quickly. Then, with men and boys’ autism presents itself
in intense focus on topics that they are interested in, monotone voice, difficulty
picking up tone, and constant repetition of words or phrases, to name a few. Just
from this website alone, is it clear that the signs are very different based on their
gender.
One of the main signs of autism in girls which makes the condition hard to detect is
masking. This is where a girl or woman may copy behaviours, mannerisms and even
speech or those around them, in order to fit in, or act neurotypical. Because of this,
many autistic women may appear neurotypical, and many of my friends describe that
in fact they have masked their entire lives. Autistic people also thrive with routine,
and so autism can show itself most providently when this routine ends, for example,
many of my friends have realised they are autistic since leaving school. The lack of
understanding of masking, a mainly female characteristic of the condition, causes
this.
The Consequences of Late or Missed Diagnosis
For many women, the lack of an early autism diagnosis leads to years of
misunderstanding themselves and struggling with mental health issues, especially in
adulthood. For example, many women instead of being diagnosed with autism, are
diagnosed with anxiety and depression or even borderline personality disorder, as
the symptoms are very similar. As well as this, a lot of autistic women suffer from
burnout and fatigue due to constantly masking, as well as social anxiety.
Furthermore, in a world built around social norms, autistic women tend to struggle in
relationships, friendships and in employment, leading to social anxiety. As well as
this, I want to make a special mention to eating disorders largely caused by autism,
especially AFRID, which stands for avoidant/ restrictive food intake disorder. This
dangerous eating disorder is rare but is largely misdiagnosed and misunderstood
and is matched with the signs of autism in women, such as a dislike of certain foods
or textures of foods. This is present in a number of autistic women, and the question
remains of how much the consequences of this could be prevented if women were
diagnosed in earlier life.
Improving Autism Diagnosis in Women
So, what can be done to close this gender gap? First of all, it is imperative health
officials are properly schooled on what autism looks like in women, and therefore
diagnose based on a different criteria then men. Furthermore, there should be more
awareness of what autism looks like in women publicly, so women can be
encouraged to seek assessments. This could lead to important support groups,
helping the self-esteem and mental health of autistic women, helping manage the
symptoms of autism, in a world built for neurotypicals.