via Daily Prompt: Confess

I must confess that even though I hate it when people claim that someone is too high functioning to be autistic or not autistic enough to count or truly suffer, I am a perpetrator/victim of that kind of thing myself, at least in my own head.

I don’t feel comfortable saying that I’m autistic or have autism. Instead I say I’m on the autism spectrum. What essentially is the difference between being on the autism spectrum and having autism or being autistic? I’m not sure that there is one but somehow saying I’m on the autism spectrum feels safer and more appropriate.

Maybe if I emphasize that autism exists on a spectrum, I’ll protect myself from the judgments and accusations of others. Maybe they’ll realize that autism doesn’t just encompass people who are intellectually impaired, have limited use of language and are smearing feces but people like me who are able to express themselves eloquently, go to college and pass for neurotypical. Maybe I won’t get told that I don’t seem autistic or that it’s impossible for me to have autism.

Maybe if I emphasize that autism exists on a spectrum it will be understood that every autistic person is different, that if you’ve met one person with autism, you’ve met one person with autism. Maybe I won’t be compared to other autistic people, maybe I won’t be told I’m using autism as an excuse.

But if I’m being honest those kinds of judgments and accusations aren’t just coming from other people but from me. They’re directed towards myself and towards others. I don’t voice such opinions about myself very often and I rarely voice such opinions about others on the autism spectrum but they exist in my head. They’re often fleeting thoughts that I challenge, that I push away and that I’m ashamed of but they exist nonetheless.

For as long as I can remember I’ve felt that I was somehow different from most other people and not in the ‘everyone’s special and unique” kind of way. I knew that I had some kind of disability, that I was at some kind of disadvantage, that I was somehow wired differently. Everyone who got to know me realized this but for my entire childhood no one considered that I could be autistic and it never crossed my mind that I could be autistic either.

In those days the general views and perceptions of autism were pretty narrow. Autistic kids were only those kids who didn’t talk, didn’t make eye contact and were entirely off in their own world. There was no way a child who was as verbal and eloquent as I was could be autistic.

Even though the perceptions, classifications and diagnostic criteria have changed since I was a child, even though today plenty of people who express themselves eloquently proudly (or not so proudly) call themselves autistic, I still have trouble shaking the original stereotypical perception of the autistic person. It’s ingrained in my mind and it’s a person that isn’t me. “I’m autistic”, “I have autism”-when I try to make those words flow from my tongue or my fingers I feel like I’m wearing a coat that doesn’t belong to me and I want to take it off.

Logically I really disagree with the notion that ‘high functioning’ and ‘low functioning’  autistic people are so fundamentally different that they have no common ground and should not advocate for one another, that high functioning autistic people never suffer in the way that low functioning autistic people do ( and I have issues with the high functioning and low functioning labels existing in the first place.) I will readily and vociferously argue against anyone who holds such a viewpoint.

And yet… there’s a part of me that feels that viewpoint is right and that I don’t have the right to share the label of autism with someone who is unable to speak, that I haven’t experienced life or suffering in a way that’s comparable to how they’ve experienced it.

I’ve experienced that feeling in the opposite direction too. There have been times when I’ve read the blogs of people who call themselves autistic and thought “Fuck you! How dare you call yourself autistic and claim that you’ve suffered as a result of your autism! You’re not as disabled as I am! You have a job, a partner and kids! I can only dream of having those things!”

The fact that I’ve experienced that thought in both directions-that I’ve felt that I’ve suffered both so much less and so much more than other people who are labeled autistic is perhaps a good argument for why we shouldn’t try to put autistic suffering or any suffering for that matter on some kind of ladder or hierarchy.

Today my mom’s friend told my mother that a friend of hers had a six-year-old grandson that was diagnosed with autism. She said that he flaps and she remembered that I flapped as a child too. A hint, a suggestion, a validation that other people see me as autistic, perhaps a nudge towards feeling comfortable thinking of and referring to myself as autistic.

My mother informed her friend that I still flap. There was a moment of awkward silence on the other end of the phone.

It was a moment where I could have either laughed or cried. I chose to laugh.

 

8 thoughts on “Confess

  1. This struck a chord with me (as many of your blogs do). While you were talking about your experience with autism, you seem to share many of the same feelings I have about being a breast cancer survivor. It was hard— and sometimes still hard— to say out loud or think of myself as someone who had cancer. I remember when I was diagnosed the doctors and medical professionals I worked with kept referring to the cancer as my cancer. They would say things like “your cancer is hormone receptive” or “your cancer responds well to radiation therapy.” Of all the things in the world that I thought of as “mine,” cancer was just not one of them. I didn’t want to claim it either.

    I also understand what you mean when you sometimes feel bothered by people who minimize your challenges while at the same time you sometimes you choose to see yourself as not affected as so many others. I struggle with this too as a survivor. On the one hand— it hardly seemed like Cancer because I never felt sick a day, it was stage 0, found early, and dealt with effectively, efficiently, and with little suffering. On the other hand— when folks close to me and in denial about my diagnosis minimized what it was saying things like “hardly cancer” “lucky because it is barely cancer,” i got angry and reminded them that surgery, spending a few minutes 5 days a week for 7 weeks in a linear accelerator getting irradiated, taking pills every day for 5 years, and having nightmares about recurrence is not “barely cancer” it’s cancer.

    I know there are many differences between what you and i have experienced and i don’t mean to acquaint our situations—but I thought it interesting that we share many of the same feelings as a result of them. And like you… I will choose to laugh.

    Liked by 4 people

  2. This part: “I’ve read the blogs of people who call themselves autistic and thought ‘Fuck you! How dare you call yourself autistic and claim that you’ve suffered as a result of your autism! You’re not as disabled as I am! You have a job, a partner and kids! I can only dream of having those things!'”

    Yup, guilty as charged: I have a job, a partner and kids. And I find it wholly believable that you have suffered more from your own autism than I have from mine. I know that many people have, so even though I know almost nothing about you, I estimate a very good chance that you are one of these. If so, you have my sincere sympathies, for whatever they may turn out to be worth.

    I won’t offer you an insincere apology for trying to steal your thunder or anyone else’s. I don’t believe that’s what I’ve been doing. Believe it or not, what I’ve been trying to do is donate at least some of the gifts I have by virtue of my allegedly “milder” autism to the project of helping others, such as yourself, who have it worse than I do.

    But I don’t want to force myself on anybody. I understand that “the road to Hell is paved with good intentions”, as they say, and so if you feel that my own good intentions have backfired in some way or might at some point, then I will totally understand if you’d rather I go backfire them in the direction of someone else.

    I hope you won’t do that though. Even if I don’t have it as bad as you do, I really enjoy your writing (you write really well, by the way, beautifully, funny, insightful!), and I strongly identify with the experiences you describe. That whole fiasco with that forum you’ve written about, the way all of those people turned on you. That’s practically the story of my life. I have an uncanny knack for manufacturing conspiracies from otherwise arbitrary groups of people who have nothing else in common than their shared dislike of me.

    And I also understand your ambivalence about your diagnosis. Although my mind is still open to alternatives, after months of struggle similar to your own, I have finally come to feel totally comfortable with telling people that I’m autistic, and this without any qualification. Although I also enjoy saying that “I’m autistickish”, for me this is just a more colloquial way of conveying the same meaning that the more jargon-like word spectrum conveys. As I have come to understand autism, a primary reason that the experts have switched to calling it a spectrum is because no autism researcher has ever succeeded in drawing a clean boundary around it. There is simply no way to take any group of people and sort them into two groups — one that is autistic without controversy and one that isn’t.

    At this point for me, the burden of proof is on the skeptic, and any pretender to that title had better be ready to do more than squint and scowl at my diagnosis. Before I take any skepticism seriously, the skeptic will have to be a bonafide autism expert, and he or she had better come equipped with a plausible alternative diagnosis that better explains the data of my life.

    By the way, I have no interest whatsoever in turning autistickish into some kind of brand or trademark. I invite you or anyone to use it or not as desired (or not). And there’s no need to tell anybody you got it from me either. It’s just a normal word, that was put together by the normal rules of language extension in English.

    Hope some of all that was useful for you in some way.. 🙂

    Liked by 1 person

    1. No, I don’t begrudge anyone who has a job, partner or kids for calling themselves autistic or speaking out about their autism. I’m glad they do. I’m also aware that having/not having a job, partner or kids are not always permanent statuses. You can quickly (or slowly) go from not having to having one or all of those things or vice versa and you don’t become more or less autistic as a result. Thank you for your insightful response.

      Liked by 1 person

  3. I am currently classified as being on the spectrum here in the USA, even though what I have is medically distinct in its cause and some of the traits, at least according to experts. The truth is, I need community more than I need to be different. I grew up before my specific disorder was even clinically described with a fear of “the system” that I still think was appropriate for me. I have pieced together a lifetime with a variety of ways of supporting myself and relationships including one marriage that have come and gone. (No children.) Were I growing up today, I would probably wind up at the mercy of social workers, likely in a group home. Do I relate to and support others with autism? The truth is, I don’t even know very many. I worked for a while for a non-profit that employed higher functioning “developmentally delayed” people who basically provided the State of Ohio with cheap labor. I didn’t treat them any differently than anyone else, although I recognized their limitations.

    Liked by 2 people

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