I Am Lucky To Be Autistic. You Shouldn’t Have To Be.


Three years ago I knew almost nothing about autism. I didn’t know what sensory sensitivities were, what a meltdown was, or why a weighted blanket might be someone’s lifeline. I had been diagnosed with depression, anxiety, anorexia, and subclinical borderline personality disorder. I had been in therapy for almost seven years, including two intensive programs, multiple groups, individual therapy, and family therapy.

Three years ago I would have laughed if you told me I was autistic. No therapist had ever suggested the diagnosis to me. I’m highly emotional, not analytical. I’m overly sensitive, not someone with flat affect. I’m highly successful in school, I don’t struggle at all.

Here I am three years later with an autism diagnosis that makes sense of my life in a way that no prior diagnosis ever has. And I have to be honest; it was luck and privilege that got me this diagnosis. Not only that, it was luck and privilege combined with my own determination, curiosity, and NEED to understand myself that got me the diagnosis.

That is entirely unacceptable.

Why are autistic women slipping through the cracks? Why are verbal autistics getting missed? Why are “high functioning” individuals going untreated, even when they’re suicidal or showing oodles of other symptoms?

Let’s chat about the brokenness of autism diagnoses.

When it comes to mental health care I am lucky. I have been insured my whole life, I have had access to therapy, and I have had support from my family in getting therapy. So how is it that someone who has been interacting with the mental health system for years and who is definitely autistic never received a diagnosis?

There are many, many reasons that I did not receive a diagnosis until I began to work at an autism organization, recognized the traits in myself, and sought out a diagnosis. The first is that I am a woman. Women are chronically underdiagnosed with autism, in large part because most of the research of autism happens with men and boys. The second is that I am highly verbal…most of the time. If you’ve seen me during a meltdown you understand that my verbal abilities rest entirely on my emotional state. People assume that autistics are either incapable of speech, only speak in echolalia, or have very limited speech. The third is that I was being seen in an eating disorder clinic for most of my therapy. There are certain diagnoses that are seen a classic overlaps with autism (ADHD, anxiety, etc.). There are some that are seen as diametrically opposed: eating disorder, BPD, or other diagnoses that are woman dominated.

These are all horrible misconceptions, and they’re all misconceptions that I have heard from therapists and providers. I have had to teach my therapists what autism looks like. That is a huge fucking problem, and autistics (as well as specialists who have a better understanding of the spectrum) have a LOT of educating to do.

I’ve heard psychologists say that if someone can make eye contact then they can’t be autistic.

I’ve heard people say that you grow out of autism.

I’ve searched for a place to receive adult diagnosis and found only one or two instead of the dozens that diagnose children. This means that the wait time at most of these locations was 6+ months for a diagnostic assessment.

There is so much stigma and misunderstanding that leaves autistic adults struggling to receive services. What’s particularly awful about this is that if you are an undiagnosed autistic with no supports in place, trying to battle with healthcare providers is nearly impossible. Researching, self-advocating, creating appointments, following up on appointments months later…this is a gauntlet of executive functioning that would challenge anyone. It is entirely inappropriate that an entire population of people are expected to fight their own neurology as well as mental health providers in order to receive services.

I know that many providers out there are struggling to help their clients and to obtain services for their clients, but there is so much stigma and misinformation that continues to leave vulnerable folks in the lurch.

What happens when someone gets missed during school? What happens when the mental health system doesn’t recognize autism and keeps misdiagnosing? HOW MANY AUTISTIC PEOPLE have to go through two or three or four or seven misdiagnoses before finding the one that helps?

Why is so my research focused exclusively on boys? Why do so few clinicians who aren’t specifically trained in autism have any understanding of the breadth of the spectrum? Why aren’t more women and girls and nonbinary individuals encouraged to seek treatment? Why haven’t we researched the fact that there is a much higher than average trans population in the autistic community?

I don’t have easy solutions. It takes money and resources to better educate our service providers, to create more clinicians who can diagnose and who specialize in autism, teachers who recognize autism in a variety of presentations, parents who encourage neurodiversity.

But what I do know is that no one should have to be lucky to find the diagnosis that will change their life. We can do better. The diagnostic system is broken if nearly every autistic woman has to go through multiple diagnoses before getting the right one. And we need to fix it.

8 thoughts on “I Am Lucky To Be Autistic. You Shouldn’t Have To Be.

  1. LunaMarie

    I have followed you here and am grateful that you are moving forward. This piece is extremely relevant and I am sure this blog will give many people comfort, education and insight. Thanks.

    Liked by 1 person

  2. I worked with adults with developmental disabilities for 2 years and have wondered if I’m autistic. But I’m female and can be chatty/overly emotional so not sure how easy it would be to get diagnosed. It just makes sense of so many challenges I faced growing up and as an adult. Anyway, thank you, this resonated with me.


  3. Reblogged this on A Hat Full of Ness and commented:
    So much this.

    I got my autism diagnosis this year, aged 31, after struggling for years with so many things. I was a high flier at school and university, struggled through a PhD with very limited support, and no-one noticed or suggested it as a reason for my struggles. I went to primary school in the 90s and Asperger’s was not a diagnosis they considered for girls who were spectacular at learning (Gifted! Woo!) but sucked at making and _keeping_ friends.


  4. Concerned for you- another autistic whose thought about it more than you

    No such thing as privilege or non binary people, there are only two biological sexes and privilege should never be taken into account and is irrelevant: you’re just writing a leftist think piece and calling it autism awareness. This isn’t helpful and it’s just a rehash of every other leftist autism take. It doesn’t produce material benefits for autistic people to discuss us this way, it just produces further self victimization and our perception of being oppressed. Wake up and smell the coffee.

    Also, there being services for boys isn’t a bad thing. We don’t need to take services away from them to get them for ourselves. That’s a reductionist and very communist way of thinking about redistributing resources: it’s also immoral and pretty terrible, in addition to just being out of a place of jealousy and resentful sadism.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s