14 Who Gets to Be Diagnosed? And Who Does It Serve?

Victoria M. Rodríguez-Roldán

Nobody is worthless; nobody should face lessened prospects or mistreatment because of who they are.

ONE OF THE PERENNIAL DEBATES in the autistic community is the topic of self-diagnosis. As someone who only “came out” as autistic in her adulthood, that is rather personal to me. Many people often try to invalidate the experience of autistic people who either realized their disability as adults or simply were never diagnosed by a clinician. In my case, I learned as an adult that my mother had been encouraged to get me “tested” for autism, but she had refused. And it tracks with the type of mother she was. She needed to see me as perfect and destined for greatness, and my being a near-gifted child with many academic honors only reinforced the idea that there was no way I could have intellectual or mental health disabilities. If she and the other adult figures in my life had a mental image or stereotype of what an autistic child looked like, it was the “low-functioning” (use of quotation marks intentional) child who is non-oral and is regarded as the R-word.

In some ways, I wish my mother had followed that advice and prospect with an open mind and taken the steps to get me a diagnosis. Maybe it would have been validating for me in adulthood to have had that. Maybe I would have received accommodations at some point that might have made my school years a bit less miserable. Who knows?

The truly big conclusion I’ve come to is that it was probably for the best that I never got diagnosed and flew under the radar. And the reason for that goes beyond the fact that it was the 1990s, though that forms part of it.

To get there, we have to answer a couple questions: First, who gets to have a childhood diagnosis? Second, what effect does it have?

So, who gets to have a diagnosis in the first place? Well, we can discuss privilege, to begin with. If you have good insurance and access to genuinely nonjudgmental psych specialists, you might be in luck. That already is leaving out a lot of the population. People with low income or limited access to healthcare have a lower likelihood of getting in through that front door. We must also take into account that people of color and women are less likely to have their concerns taken seriously by healthcare professionals. So, the people with the most access to a diagnosis are going to be primarily white, affluent, and well insured.

That is the obvious part. But, also, what impact does the diagnosis have? Often, among us disabled and chronically ill people, getting a diagnosis is a joyous moment, since it comes with answers and explanations as to whatever trials and tribulations we might have been experiencing to date. But outside our community, abled people often treat a major diagnosis as some tragedy that requires a mournful violin soundtrack. Autistic youth are routinely shunted into tortures like ABA therapy and segregated schooling, and unless the parents know better and fight for their kid, they are frequently sold the story by educators and therapists that their kid will “never amount to much,” so to speak. Throw in all the stereotypes often perpetuated by providers themselves (lacking in empathy, low emotional intelligence, will never find love, etc.)—I can keep on going. There’s a reason that as neurodiverse people, almost none of us wants to relive our childhoods. This one is part of that reason.

And thus, I wonder: How would I have been treated by the adults in my life had I gotten that diagnosis back then? Would I have gotten the amazing help I needed, or would I have been shunted into abusive “therapies” that would only have made my childhood even worse than it actually was? Would my parents have still put the effort and expense into channeling me to good schools, with higher education and a professional career already a foregone conclusion? Would the “extreme male brain” stereotype have been used as one more weapon against me when I came out as trans later in the early to mid-2000s?

Sadly, given the time and place and realities in question, I have to admit that it was probably for the best that I never got the vaunted diagnosis to begin with. In a weird way, it is its own privilege—that one of my disabilities flew under the radar and wasn’t used as a weapon against me.

But that speaks volumes and is in some ways what every parent should know: Your child does not have to be perfect, and your child isn’t a failure because they are or may be autistic. And you should allow no one to tell you that they’ll amount to less or are worth less, or that they should receive subpar treatment. Give them the best. Nobody is worthless; nobody should face lessened prospects or mistreatment because of who they are. Your role is to ensure that for your children.