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.
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.
I can hardly wait for part 2. Having just received a diagnosis of Asperger’s a week ago, this is a timely post for me to read. I have struggled with this idea of being in between somewhere for over a year now, and prior to that I simply felt like I had never belonged anywhere and never would. I was functional, but yet not as functional as most of the people I observed going about their lives.
I realize that there are probably many people who would discount my experience or my identification as being on the spectrum, even with 2 psychologists and a psychiatrist agreeing that a clinical diagnosis was warranted for me. And I don’t think I am strong enough to fight them or convince them otherwise, but I am so thankful for what this “knowing” has done for me already.
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!!)
Kathleen,
I think I understand and agree with what you’re struggling to say…but I’m not sure. Children are children first–that I agree with wholly and completely. And disabilities, whether its autism or something else, changes the way a life will unfold, but do not change that there is a person living that life. I love that your blog presents itself as a “parent blog,” with all the fun and messiness being a parent entails, versus an “advocacy blog” or a “woe-is-me blog” or a “you-have-to-try-this-latest-miracle-therapy blog”.
Autism is a significant part of who my children are, but it’s not all of who they are by any means. Some of that is that autism is a spectrum and presents itself differently. Most of it is that they are just different people.
Aspergirl Maybe,
I should clarify: There are many people who are on the autism spectrum who are functional. You can be functional and still have a disability. I was not trying to suggest otherwise.
It is my experience that there is a spectrum in ability in the general human population. Some people are able to do an extraordinary amount of things for themselves, with relatively little strain. These people are often admired and because ability comes so easily to them, people assume their lives must therefore be easy–which is an unreasonable and unfounded assumption. Some people are able to do many things (an ordinary amount of things?) for themselves, with relatively little strain. Some people are able to do many things (an ordinary amount of things?) for themselves, with a mild amount of strain. Others with a moderate amount of strain. (I consider myself inbetween the latter two, depending on how much noise or social interaction is required to engage in an ability.) Others are able to do fewer things but still experience mild or moderate amounts of strain. Some are either limited or unable to do things in specific areas (like walking or hearing) and others experience more pervasive areas of limited ability.
Where ability stops and disability starts (how absurd that sounds!) depends on whether you are using a social, a medical, or a governmental designation. For example, my husband’s bi-polar disorder is a disability by social contexts and by most medical context, but he’s not so limited as to meet the federal government’s criteria for SSI, but still limited enough to be (at least in theory) protected from prejudice on the basis of disability laws.
If disability were just about the things I can’t do–like pay attention to a professor’s lecture while making eye contact and attending to nonverbal social cues–then I would qualify. But it’s not so simple. I choose to make eye contact occasionally, to provide the teacher with the social cue of “paying attention”, I ignore body language unless its acute, and I listen–when called on or when class response is sought, I participate. I don’t need the teacher to do anything to accommodate me. I just need space to look away while he or she is talking without being snuck up on and called out for it (which happened a lot in grade school). Making accommodations for me now is just about allowing for me to be different than the norm. That’s all it takes. That’s all it would have taken in grade school, too.
Now consider Willy. Willy now presents as high functioning autism. He’s mainstreamed, he can keep up, he has friends, he communicates effectively, ect. But in order to present as high functioning autism, he needs a great many more accommodations. He needs the space and access to listen to his teacher from a bean bag chair in the corner. He needs breaks throughout the day–which might be as simple as a few extra minutes to sing his lungs out in the bathroom and let the sound (which is wholly under his control) wash over him. He needs speech therapy to learn conversational skills, he needs social therapy to learn how to better understand social situations, he needs occupational therapy to catch up his fine motor skills and coach him on his sensory diet, and he needs special physical education coaching to work on his coordination and help him keep up with directions when he’s struggling with the many different tasks that go along with participating in sports. He needs part-time aides to help him catch all the directions and sequence them effectively. He needs modified testing so he can read the questions aloud without distracting his peers and concentrate without them distracting him. Without these modifications and accommodations to his regular education curriculum, he would not present as high functioning.
I would not have benefited from any of those accommodations or modifications any more so than a typical student, except maybe a sensory diet, when I was in grade school. I don’t need that. Willy does. Reading Rachel’s book, I can’t help but conclude that though she did not get any of that, she could have benefited from it more than I would have. Her experiences were more acute. The worst things that happened to me, from an ability/disability perspective, in grade school were freezing whenever the fire alarm was sounded (which even I attributed to trauma from our house burning down, until I understood how such a sound sends me into a temporary state of sensory overload which is traumatic all by itself) and being called out and humiliated for “not paying attention” when I could (and did) repeat everything the teacher said back to her verbatim.
In conclusion, I do not want anyone–especially you in such a fragile state of understanding your own place on the spectrum–to think that function excludes a diagnosis of autism. It does not. Being able to function isn’t the crux–how much work is, how draining is it, would you benefit from accommodations and modifications which may or may not be available to you? That’s the crux. Surviving your autism without accommodations and modifications, while a horrible “accomplishment” to have to endure, does not make you any less autistic.
Aspergirl Maybe,
BTW, long responses are totally okay here–no need to apologize!
As for the question of how much anxiety and depression can be attributed to trauma, stress, and the struggle to cope versus how much it can be attributed to co-morbidity…I’m not sure anyone has the answers to that. But it’s a very good question. I know my anxiety levels spike only when I have to cope with sensory situations I should never have to cope with–like shopping on Black Friday. I would not, however, attribute my bouts with depression to my being adjacent to the autism spectrum. For me, depression is its own animal.
But Rachel’s experiences with anxiety and depression had a whole lot to do with her autism. If you haven’t read her books, I strongly recommend it. Short of that expense, spend time looking over her many wonderful posts–they’re not necessarily in order of experience, but I believe all the material is there.
- November 16, 2011 at 12:02 PM
Imminent Burn-Out? (Part 2—Rachel’s Experience) : Embracing Chaos[...] 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 [...]
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.
- November 18, 2011 at 12:05 PM
Imminent Burn-Out? (Part 3—My Panicky Aftermath) : Embracing Chaos[...] 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 [...]
Aspergirl Maybe,
You’re very welcome. I highly recommend Rachel’s second book. It’s an excellent follow-up to the first.
Wow. I could have written this post.
- November 21, 2011 at 12:05 PM
Imminent Burn-Out? (Part 4—The Next Word and Resolutions) : Embracing Chaos[...] I knew I was adjacent to the autism spectrum, I read about Rachel’s experiences, and I [...]
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!
