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.