Your Presumption Is Obnoxious

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CW: self harm, eating disorders

Earlier this week I posted an article detailing some clashes between autistic self advocates and parent advocates about whether it was appropriate for self advocates to represent the autism community as a whole, especially because (in the perception of parents) if a person is capable of engaging in self advocacy, of being part of a committee, of speaking for themself, and of intellectually understanding and pushing for civil rights, they are not even on the same spectrum as a child who will never live independently and has severe needs.

I am not the first person to explain why this is so very very wrong. You say that we are not like your child, but when we tell you the ways that we are, you discount our abilities. You say that we are not like your child, but when we show you that functioning depends on context, you demand conformity to neurotypical behaviors.

But I think that I am a particularly good example of why “you’re not like my child” is such BS, because no one has ever accused me of being high needs or dependent or any of those other awful words. I present as highly competent and highly functional, and I flew under the autism radar for a very long time. In fact I flew so under the radar that no therapist ever even brought up the diagnosis to me. I brought it up to them.

I was successful in school, I have always lived independently, I have always had a job, I have always had friends, and I have always had romantic relationships.

I appear incredibly high functioning because I am productive. I hold down a full time job and I freelance. I write a blog. I record and edit a podcast. I build websites. I volunteer. I am a public speaker. I do crafts and art projects. I create a great deal of output that people can point to and say “look how productive and functional she is.”

But autism nearly killed me.

How could something that doesn’t keep me from earning money or getting a degree or having relationships cause so much damage?

Before I was diagnosed, my mind was a hellish place to be. I don’t remember much clearly from the five years between the ages of 18 and 23. I do remember how nearly every moment of my life felt painful. Every moment I was a second away from feeling vehement hatred for myself, an overwhelming emotion that left me almost blinded, and desperate to rip out of my skin, destroy my body, or disappear entirely.

Being on the brink of suicidal for five years is exhausting. Externally it might have appeared that I had a reasonable quality of life, but internally I cannot express how deeply awful it felt, constantly. I spent years of my life counting down the hours until I could cut myself again, doing it daily if not multiple times in a day.

If it hadn’t been for the aggressive support system of my family, I would have killed myself.

Why? Because I was constantly feeling as if I couldn’t navigate my social systems. I felt lonely and empty and pointless because of perseveration and missing social cues. I was on sensory overload far more of the time than I realized. I didn’t get that I could stop and try to fix these feelings. They were just what living felt like to me. It was like my life was one neverending meltdown, but I had to get up in the morning and keep going because there were no other options.

And this whole time I was going to college. I graduated in three years, double major. I was published. I held a job. I had boyfriends. I had friends. I went to extracurriculars. Many people point out the fact that functioning is uneven, that you may see when someone is at their most functional but miss that at a different time, with different supports, they are not as capable. Someone could look highly functional in one setting, but require significant supports in a different setting.

But functioning labels miss even more than that. They completely overlook quality of life. They forget to think about what accomplishing a given task takes out of a person. Sure, I was functional, but every day for years I was on the brink of suicide (which I would argue is the least functional thing you can be).

I tapped out every resource that I had to keep going through those years, and every day felt like I was expending energy equivalent to climbing a mountain. Giving me the supports that a “lower functioning” person more visibly needs has improved my quality of life by leaps and bounds. Saying that they are “higher need” than I am misses that the impact of supports in my life has literally been night and day, the difference between spending every day wanting to die, and finding myself actually feeling joy on most days.

It’s the difference between being incapable of feeding myself, and refusing food for five years, and today, where I eat a reasonably healthy diet, intake food regularly, and even cook at times.

So yeah, I COULD survive, for a while, as a “functional” human adult without supports. But why should I? Why should I have to suffer because I’m really good at doing things that feel awful?

The presumption that I don’t understand what it’s like to be seriously disabled, that my condition is less serious, that I do not need supports…these are the things that lead people like me to go undiagnosed, to spend years of our lives in deep, dark depression, and sometimes even lose those fights. Functioning labels fucking kill, and that’s not a god damn exaggeration. Your assumption that I am not like your child dismisses all of my struggles. It disrespects not only me, but all the invisibly disabled people out there.

I am like your child. I struggle. I require supports. I require understanding. You do not know my life.

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

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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.