I was diagnosed at age 40 after an impressively long run of not having “Autism Awareness”. I feel the need to say that right off the bat because I keep hearing within the community that there has been enough “awareness” and that all we need is acceptance. While I agree with the latter half of that statement, I can tell you that even within the medical and psychiatric communities that is no more awareness than I had prior to my own research on the subject before my diagnosis. The fact is this, at least in my state, the only people that have any understanding of who or what we are are those that either are and know it or those that have studied or lived with it.
But, all of that has personal bias. The medical community largely still accepts the medical model of Autism even though that has become largely suspect as we see a huge variation in those that seem to “exhibit” the signs. They tried for decades to find a box to put us in. Genetic models. Clinical trials. All to mitigate what exactly? It seems to partially be to alleviate parental “burden” as Autistic people age out of bad re-education camps. But, it seems the primary concern is to lessen or end the cost to society. Cuz who wouldn’t want to alleviate suffering and cost to society in one go, right? I mean, we just need these prevalence numbers just to know who to help, right? That’s what I would have thought before my diagnosis. The medical field is designed to help, isn’t it? Nope, but more on that later.
Why does this almost political set of questions enter into a discussion about who I am on the inside? Because 1) Autism colors every perception of every experience I have as a human being and therefore is an integral part of who I am, and 2) that to destroy that which makes me me, would effectively kill who I am. Okay, so it’s not a new argument, but it absolutely is a logical understanding of how I tick.
Next would come the naysayers that either try to argue against that understanding or try argue I’m not Autistic enough if I’m not absolutely miserable and totally wretched and worthy of munchausen by proxy style attention to my family. Cuz that’s what these “Autism moms” or “Autism parents” are looking for. They want to be told over and over how brave and kind they are to put up with us and how damaging we will be to marriage, siblings, society, et cetera. The list of our rather far reaching ill effects are near legendary amongst the Autism community (not to be confused with the Autistic community). It’s really no surprise kids have picked it up as the new catchall insult, when we have everyone trying so hard to demonize us. We even have a “survivors” group of women forming to bad mouth us partners. It seems everyone wants to cash in on us one way or another to sell a book, to maintain funding, and so on.
With this in mind, I don’t blame people for not wanting the stigma and refusing to be counted. Nor do I blame teens for being angry over their diagnosis and not wanting others to know. I don’t even blame those that think a cure would help them, cuz you know, self-hate looks like a shiny neurotypical if you get the dosage just right. (Oh right, I’m not supposed to understand sarcasm. I guess I’m not Autistic enough.)
I mean, I wouldn’t be Autistic anyway to many because I was late diagnosed. Clearly, I’m “high functioning” and just quirky, right? There is nothing functioning about my burnouts or my bad executive functioning days. There’s no coming back from some of social mistakes. But even with all that, my diagnosis was the best thing to happen to me, and that does not get airtime because it doesn’t fund campaigns or research facilities.
How does it feel to be an instant minority group that has been abused and persecuted? Pick any one group. None would say they wish they were not part of their ethnic group or religion without blow back, except the disabled. We’re always supposed to be sorry or felt sorry for. We have fundraising walks that allow otherwise selfish people believe they did something good in their matching sweatsuits and fancy bottled waters. Do they even know how this money will be used? It often matters more that they were seen at the event so they got another notch on their well-tanned charity belt.
How does it feel? A combination of self-righteous outrage and completely liberating at the same time. After a lifetime of not fitting in, I finally have a community of people that actually get me for me. For the first time in my life, I do not feel broken because I am now liberated from the expectations I had for myself when I thought I was neurotypical. That’s not to say I’m content “with my lot in life”. I have not lost aspirations, they have just modified dramatically, and not just as “lowered expectations”. Different expectations. And far less beating myself up for not having the spoons I need on a given day. For the first time I’m actually kind to myself, not constantly beating myself up.
And at the same time it feels like my diagnosis has built an institution of financial drain upon society that accomplishes absolutely nothing but damage to Autistic people. It exists solely now for it’s own sake. It provides jobs, and that seems to matter more than anything they actually do. They can’t seem to move beyond their own paychecks to remember that what they were supposed to be doing was helping.Or, they are just too blind to see that they cannot continue this charade that they can somehow find a way to make us fit the world rather than the world evolve to fit us.
Beyond that Autism doesn’t “feel” like anything. I think I feel “normal”. I thought I experienced the world like everyone else, but now I know that that is impossible because everyone experiences the world differently. Everything from how we experience a color to how we understand the same events can be hugely different. Some people see pictures in their mind’s eye and others cannot. Some think in words and phrases, but others think in feelings. There’s no simplistic cookie cutter we were all supposed to drop out of. Yet, we still cling to this notion that there is a right and wrong way to be.
What I can feel is exhausted more quickly due to social exhaustion. I can feel overwhelmed by lights and sounds. I might snap at someone if I’m under-rested. I may alienate an entire group because I am too honest about how I see things. I may not display my feelings in ways that others understand, but I certainly feel them. But who cares what I would actually like help with, the professionals know exactly what I need, right? My actually difficulties I’d like help with they, for the most part, have no answer for. They only know how to force us to mask who we are for the comfort of others at the cost of our mental and physical health.
Why are the needs we, Autistic adults, say we’d like addressed ignored or suppressed? Partially because they think know better than we do because they always think in terms of the intellectually disabled and it parallels the white savior mentality of the white Christian that goes to heathen lands to bring the Bible to “civilize the savages”. The rest is a true belief in the medical model that treats any brain that deviates from the supposed norm is defective and should be “corrected”.
If you want to know what Autism feels like on the inside, first consider that the very core of my being is now viewed by a very large portion of society as inherently flawed, and that the only reason this is true is because of the label now ascribed to me. For 40 years, I may have been just rude, arrogant, pedantic, but I was not “defective”. My IQ had always been high, so the expectation was that I’d have a very successful work life. No one seemed to account for the reality that women, in particular, must have social skills to navigate the work world.
So, I feel few things. I feel deep sense that I have been let down by my family, my school, my therapists, and everyone else that might have been able to recognize my differences, yet conversely so unbelievably grateful that I did not end up in ABA. Some OT might have been nice, however. I genuinely feel robbed of the career I might have had if people were capable of tolerance. I feel robbed of better choices I could have made. I feel that I don’t want another child to go through life hating themselves, feeling incompetent, being abused at home or school, hated by peers, and never allowed the opportunity to shine in their own way. Wasted potential, that is mostly what I feel. But, I don’t blame the Autism, I blame wasted time on cure obsessions, crackpot herbal quackery, anti-vaxx nonsense, and hours and hours of torture to force children to comply.
That is what Autism “feels” like .