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.
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.
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.
I am a passionate autistic advocate and my aim is to help to spread awareness, understanding and acceptance of autistics.
I live in the UK and, other than writing, enjoy several different craft hobbies (when I have time and my PDA lets me indulge!) and talking our son and our dog to the woods for a meander!
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15 Responses
I was wrongly diagnosed, as well. Thank you for sharing your story. Here is a post that is related. https://everydayaspie.wordpress.com/2016/02/03/autistics-share-professionals-miss-the-mark-in-recognizing-autism-in-women/
True. Any advice on getting help for a middle-aged woman who has figured out her condition?
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.
I have tears rolling down my face this is my beautiful daughter journey
I actively participated in therapy, psychiatry, etc. for twelve years after (what I now know was) a shutdown. ASD or Aspergers was never even suggested. Thank you for the post. I hope you don’t mind I included it in one of my recent ones. – Carmen
https://sustainablespoons.com/autistic-voices-and-their-unique-stories/
No problem at all, I’m glad you liked it and am thrilled that you’ve included it in one of your own! 🙂 xx
The psychiatric who diagnosed me was amazing – she heard me, saw me, paid attention – but the therapy I received from the same organization was beyond inadequate. First therapist politely ignored my autism and treated me as NT; second one talked to me like a five year old. She hooked me up with an organization which I was led to believe would help me find funding for returning to education as a post-graduate, a cherished dream. In reality the agenda appeared to be to help me find work, no matter how unsuitable, but I had to work this out myself; the “mentor” wouldn’t respond to direct questioning about it. As for the level of bureaucracy – more than the council. So I returned to default of trying not to have feelings, or at least to stay detached and separate from them.
I’m so sorry you’ve had to go through that 🙁 It’s unfair and totally wrong that we get treated this way. I am hoping against hope that understanding of autistics continues to grow exponentially so that, one day, we get decent health care and support. Wishing you the absolute best of luck moving forwards and I’m so sorry that you’re still suffering 🙁
I’m a 51 year old woman. Three days ago I took psychometric tests with a psychologist, via my work place, and was told I’m neurodiverse. I haven’t got the full report yet so don’t know specifics. I have a long history of mental health issues, BPD, depression, anxiety & bulimia. I also have fibromyalgia & Sjogren’s Syndrome. My mental health is better than 20 years ago, but now my pain is physical & my stress levels unbearable. I’m still in shock.
Any ideas of where I can look for support, or helpful websites much appreciated. I don’t know what’s what, although some things make more sense already. Ty. I’m in UK.
Hiya, there are some really good groups on Facebook that may well be worth looking at or joining; The Aspergian Has An Article For That, Autistic Allies, Autistic Inclusive Meets Community Group Aim, Autistic Not Weird, Neurodivergent Rebel.
I’d also look on YouTube at Sarah Hendrickx – she is the leading expert in the UK for female autism and is incredibly informative if you are trying to work out if you are autistic or not.
If you do think that you’re autistic and are a mother, I run an autistic mother’s group called The Sanctuary (A Safe Space For Autistic Mothers) that you would be welcome to join.
When I first realised I was autistic, the best thing I found were Facebook community groups for autistics – finding your tribe is incredibly healing and empowering.
All the best xx
Thanks so much. I’m not a mother, so can’t join your group. I want to see the full psychologist’s report before making my mind up for definite. However, what I’ve read so far about autism totally fits me.
Yes, indeed. We have a long way to go. The long term affects due to mental health of misdiagnosis, a lack of appropriate services, and more have lead to long to adverse long term health effects for my daughter, who is only 22. It angers and saddens me. My daughter was lucky in that she did get diagnosed but issues started arising in high school when they didn’t want to provide what she needed and only grew worse. In college she ended up in a psych ward for 2 weeks. She was misdiagnosed with other mental health difficulties and subject to ablist and minimizing comments…. and then ultimately lost her full ride college scholarship. Supports are better but the trauma I fear has caused long term further damage.
Pressure and lack of resources are exacerbating this problem within the NHS – staff are in too much of a hurry to slap a label on a file and too quick to throw people in the bin when they can’t fit the box they told them to jump in.
I experienced the same misdiagnosis. My autism has lead to life long medical phobias. When I finally got to mental health services a male psychiatrist diagnosed EUPD in 5 mins flat without discussing my mental health with me, and then they did not tell me that that is what they had done. I found out by accident two years later and it’s cost me thousands for the impartial private expertise needed to get that corrected.
All the way through my time with them I believed that they were attempting to address a medical phobia. In fact they were putting me through therapies for an EUPD. Thank God my phobia meant I refused the meds. No wonder nothing they said made any sense in relation to my experience. No wonder nothing they did, when they did anything at all, helped. Indeed much of it harmed me. No wonder I never really understood what it was they wanted from me. Of coursed, they blamed me for the fact that I was not getting better from a condition I never had.
I am astounded that despite the Autism Act of 2009 requiring them to be suitably trained, that not one of the people I dealt with recognised my autism. As I look back over my correspondence to them and the conversations I had with them, I can see so clearly now that what I was describing was an autistic experience of sensory processing difference and shutdown/meltdown in a medical environment. I’ve seen my notes now. They thought I was delusional.
I eventually worked out that I am autistic for myself and have now been properly diagnosed.
I can forgive the services their lack of training, their lack of resource and time – such issues need addressing from the top. I cannot forgive their slap dash diagnosis or their failure to believe me – that much speaks of an endemic organisational attitude (arguably laced with a dash of sexism) that needs to change bottom up. I am traumatised by my experience with them. The only way to feel better, I guess, is to be part of the conversation that stops this happening to other unidentified autistic women.