Imminent Burn-Out? (Part 1—Where I Stood)

  • Posted on November 14, 2011 at 11:29 PM

I recently finished Rachel Cohen-Rottenberg’s books, The Uncharted Path and Blazing My Trail. I’ll do a full review of each book, I promise, but those will have to wait. Right now I must address one urgent issue particular to those adults who either are on the autism spectrum or those who, like me, are close to being autistic, but don’t quite meet the diagnostic requirements.

As I’ve said before, and will again, I have many of the traits attributed to autism, including sensory processing difficulties, language processing peculiarities (a marked difference between speech skills and writing skills), and social processing difficulties. Were it not for the facts that autism (as it is defined by society) is a disability and that many people with legitimate diagnoses of autism struggle much, much more than I do (including all three of my children) and that I feel expressing my experiences as being equivalent to their experiences would detract from their struggles…were it not for these things I would feel wholly comfortable calling myself autistic.

Before I discovered autism in order to understand my children, I had never really understood what set me apart from my peers. I never understood myself. I’ve never felt I belonged in a community better than I belong with autistic adults. While I’ve always (as far as I can recall) understood that people have different gifts and different abilities, before I discovered autism I’d always more or less assumed people experienced the world in more or less the same way. I just wasn’t very good at coping with it.

Compared to the ideal neurotypical, I’m still not good at coping with it. Compared to the struggling autist, I am quite good at coping with it. And, that’s the thing. As far as I understand current diagnostic standards, I don’t qualify for a diagnosis of autism because I cope too well. I’m not disabled. Sure, coping is hard work. Sure, there are some days when I just don’t want to cope with the outside world. There are days when I dread answering the telephone, and would much rather the person trying to contact me via a letter or an e-mail. Sure, I freeze in social situations most people take for granted. But, when it comes to traversing my day-to-day life, and getting by in the world at large, I can cope more or less successfully.

(This is not some sort of gloating self-congratulatory baloney. There is absolutely nothing wrong with being disabled—except for the lack of acceptance, accommodation, and appreciation from the world at large, but that’s a problem with the world, not a problem with being disabled.)

The point is that I cannot, in good conscience, consider myself disabled. I struggle, but I can cope without the kinds of accommodations others need to cope. Sure, those same accommodations would make coping much less work for me. But I can do it on my own, with my own self-provided coping mechanisms and accommodations. There are many people who can’t and they deserve the focus of the autism community much more than I do.

I’ve struggled to communicate this position of being between to my readers, my family, my friends, and anyone else who has a need to know or who just might be interested. I was confident that I’d gotten it down (though there are still those who want to call me autistic and those who are offended when I consider myself close-but-not-quite).

But, perhaps it was time for my understanding to change.

9 Comments on Imminent Burn-Out? (Part 1—Where I Stood)

  1. Kathleen says:

    I have so much to say from a personal view point on this topic…but find the words just aren’t coming out in any sort of cohesive way.(sorry!) One of the reasons that I took three months off from blogging this past summer-was because I needed to distance myself from the online autism community.
    I have always seen my children as just that…children. Do I recognize that they have disabilities? Absolutely! My house is a very good example of what a spectrum is. We do use the word “autism” at home… However-all four of my children are unique individuals. I see many traits of myself and my husband in them. I look at all of them-some may leave home…and there is a very good possibility that some will not. Because of the diversity of all of us-The word “Autism” (for us), is an explanation-not an identity.
    I look forward to your next post.

  2. I also wanted to say that although I managed to get by for the first 32 years of my life, since then I have not been able to go for more than a few months without support from a therapist and from antidepressants. Another question that could be raised is whether my anxiety and depression developed as a result of not being identified and helped earlier, or would have reached the crisis level it did no matter what.

    I have also found that the therapy is much more helpful now that I am approaching it from the perspective of Asperger’s. I have seen more positive change in the last year than in the previous decade.

    (And I guess this should be its own post by now – sorry!!)

  3. […] I knew I was adjacent to the autism spectrum and I thought I knew what that meant. Then, I read Rachel's book The Uncharted […]

  4. Thank you so much for your response to my comments. I greatly appreciate everything you said. I have read Rachel’s first book and loved it, and I am hoping to get her second book soon.

    I lived so much of my life with my primary emotion being confusion, and now I feel like I am getting glimpses into the truth.

  5. […] I knew I was adjacent to the autism spectrum and then, I read Rachel’s The Uncharted Path. I read about how she once had a lot more functioning […]

  6. Stephanie says:

    Aspergirl Maybe,

    You’re very welcome. I highly recommend Rachel’s second book. It’s an excellent follow-up to the first.

  7. Sharon says:

    Wow. I could have written this post.

  8. […] I knew I was adjacent to the autism spectrum, I read about Rachel’s experiences, and I […]

  9. Stephanie says:

    Hello Sharon…yeah, I’ve met a lot of parents who see so much of themselves in their children with autism that they didn’t necessarily realize before. It’s an enlightening experience. At least there’s no doubt where they get it from!
    😉

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