Autism Diagnostics Justice

The Failings of the Mental Health System for Autistic Women7 min read

Women are often misdiagnosed or undiagnosed, and it has potentially-fatal consequences for autistic adults who are told that they have a cluster of mental illnesses instead of a neurological condition.
Editor’s note: The author of this article is in the UK; however, much of what is discussed in this article is relevant in many countries and regions. 

Being an autistic woman is not easy.  Especially when you are un-diagnosed, self-diagnosed, or have been diagnosed later on in life.

A large contributing factor to that difficulty is the fact that you have grown up knowing that you are different, struggling to fit in– sometimes rejecting society and not wanting to fit in.

It’s hard trying to understand social communication, romantic advancements, and verbal communication and often being shunned or rejected by neurotypical women because you are different from them and viewed as either broken or a threat.

I have spent my life on the outside, believing with every fibre of my being that there was something very wrong with me as I just didn’t understand my peers.  I didn’t understand how to make friends, or how I was meant to act in order to keep friends. 

I didn’t understand why I was bullied so harshly throughout my school life or why there was this invisible target on my back that other people seemed to be able to see but to which I was oblivious.  I felt like an alien trapped on a planet with a species that I couldn’t relate to or fit in with, no matter how hard I tried.

White teenage girl listening to music sitting by a wall while two other white teenage girls point at her and laugh

Because of this I have suffered, for 29 years, with mental health issues.

I started anti-depressants when I was eleven because I felt like I was deficient, and everything was too hard for me to cope with.

Throughout my school years, my aim was just to survive it.

When I went to college, I found a group of people that were all different from the rest of our peers.  The outcasts, rejects, and rebels of the world.  For the first time, I felt like I belonged somewhere; however, with hormones kicking in to full blast, my ability to cope with my own intense emotions that I couldn’t understand or identify (let alone other people’s) was brutally upended. 

I spiraled dangerously out of control, bouncing from relationship to relationship, getting into dangerous situations without realising they were dangerous.  Although I had found people that I could finally relate to, I still didn’t understand them, their motivations, intentions, or what they wanted from me, so I just followed their lead and went along with anything that they suggested.

By the time I was eighteen, I had left my family home.  That was when I had my first breakdown.  I was arrested and charged with (car) insurance fraud as I couldn’t deal with the responsibility of being an adult and running my own life. 

Thankfully, I did not serve any time as my doctor had written a letter stating that I was currently suffering from five different mental illnesses, classifying me as clinically insane and, therefore, ill-equipped to be able to handle going to prison.  I served a suspended sentence that I did not understand.

At this point I was diagnosed with severe anxiety, clinical depression, borderline personality disorder, obsessive compulsive disorder, and avoidant personality disorder.

I was eighteen.

Unbeknownst to my doctor at the time or to me, I was actually a severely-depressed autistic with OCD.

The depression and severe anxiety were caused by the fact that I thought there was something wrong with me, that I couldn’t understand the world, and that my peers either shunned, bullied, exploited, or abused me.

I spent my whole life trying to fit in and appear normal.  It was only when I was diagnosed that most of the pieces fell into place for me.

Still, I was lucky.  I was able to get diagnosed, albeit much later in life than was mentally healthy for me.  For autistic women who are not diagnosed and have mental health issues, the prognosis is far worse.

If you are unable to cope with making phone calls, if you don’t understand the support systems, if you don’t know how to ask for help, if the forms are too confusing to complete, or if your demand-avoidance is so high that you hide away from trying to get help, there is currently very little support out there to guide you through.  

You are left to cope on your own, and many autistics, at some point in their lives, have self-medicated with alcohol or drugs just to try to stop what they are feeling so intensely but don’t understand.

The experiences that I have heard from other autistics of their time spent trying to get support or help– or who have spent time in psychiatric facilities– makes my blood run cold.

Phrases that I have heard autistics use to describe their experiences in the mental health system are:

Scary and overwhelming

I just didn’t understand what they were asking me…

Traumatic

Soul-destroying

They didn’t understand that I was overwhelmed and shutdown

They didn’t listen to me.  They ignored me telling them that I believed I was autistic and kept saying that my impairments were caused by mental illness– not autism.

These aren’t phrases that indicate the help and support that should be given within the mental and behavioral health system.

A big problem in this country is that a vast percentage of the mental health and medical society still does not understand that there are fundamental differences in the characteristics of female and male autistics, nor that autistics are often gender non-binary and don’t conform to gender stereotypes.

Therefore, when they are dealing with a female (un-diagnosed) autistic who doesn’t display the male characteristics associated with an autism diagnosis, the most common diagnosis that seems to be given is borderline personality disorder (BPD).

Although BPD does share a small number of characteristics with female autism, it is completely different in the way that the woman’s brain is wired, how she thinks, and in the motivations and reasons for the behaviours and actions of the woman.

The terms ‘manipulative’ and ‘self-serving’ are often used to describe BPD behaviors, and interpreting autistic behaviors according to the false narrative that the woman has BPD will only cause more harm to the mental health of the autistic person who isn’t manipulative, but misinterpreted.

White old guy doctor talking to a patient.

Misdiagnosed autistic women are given medication used to treat BPD’s symptoms, like mood stabilizers, anti-depressants, and even anti-psychoitcs; but those prescriptions do nothing to actually help relieve the mental health issues that they are experiencing.

It seems to be a common experience of autistics who, when they sit in psychiatrists offices, feel lost, anxious, and overwhelmed while being asked open questions that are not specific enough to be understood by the autistic patient, leading them to be labelled as difficult or not trying hard enough.

The truth is, the patient desperately wants to be open and honest and to answer the question, but simply doesn’t understand the question enough to do so or what the clinician asking the question actually wants them to say.

Their specific autistic needs are neither acknowledged nor supported, such as their pervasive sensory needs, slow auditory processing, social overwhelm, autistic shutdown, or difficulty understanding verbal communication.

Then they are released back into the world without the support and help that they struggled so hard to ask for.

This is a system that desperately needs to be fixed.  It is failing so many autistic women simply because practitioners do not have the training or education in female autism to be able to identify it.

Diagnosticians go through their standard tick list of characteristics and symptoms (that doesn’t include female autism) and diagnose with the label that fits the most check boxes, regardless if some of those criteria are actually characteristics of female autism. 

Without recognising that the patient is autistic, those characteristics muddy the mental health diagnosis waters, often leading to an incorrect diagnosis and, therefore, incorrect treatment. 

As a by-product of misdiagnosing because of the female autism characteristics, the true mental health needs can be missed or ignored as only certain aspects of it fit the incorrect diagnosis (making it the diagnosis with the most ticks).

By increasing awareness, knowledge, and understanding of female autism, we can help women such as those who suffer under and fall through the cracks of the mental health system.  We can help those who think there is something wrong with them but have only heard about the male characteristics of autism.

There are fantastic female autistic role models and advocates out there.  Just two of many are Sarah Henderickx – the leading specialist in female autism in the UK who is also autistic herself, and Greta Thunberg – an incredible autistic sixteen year-old who is challenging understanding of climate change on the world stage. 

Both Henderickx and Thunberg have many videos on YouTube that are phenomenal and need to be seen by as many people as possible to raise awareness and understanding of female autistics.

In order to make a difference for autistic women, society needs to put pressure on the diagnostic, mental health, and medical institutions to have more awareness of how autism presents in women.  Until society makes awareness a priority, the medical world will continue to neglect the life-saving needs of autistic women.

 

3 comments

  1. True.  Any advice on getting help for a middle-aged woman who has figured out her condition?

  2. Trust me, it’s not just women that have this problem.  I was in the mental health treatment system for 21 years (starting at 10 years old) and only got diagnosed a MONTH AGO!

    I was also given OCD, BPD, Depression, Social Anxiety, Adjustment Disorder, and more WRONG diagnoses.

    My life lately has been a whirlwind of realizations and discoveries about who I am and why I did the things that I did.

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