Thoughts and illustrations on living with Asperger's Syndrome.

Tuesday, November 1, 2011

Chasing Typical

Today is the 2nd Annual Autistics Speaking Day, a day for those of us on the spectrum to make our voices heard, to raise awareness, and to self-advocate through blogs and social media. If you’re a first-time reader, welcome. I encourage you to read as many points of view as possible today. Then, if you wish, join me in turning your support into action, by making a charitable donation to an autism organization of your choice, such as ASAN.

This is a day for autistic pride. We have so many reasons to be proud. Yet it remains difficult to be as proud as we should. Because for all the awareness we raise, we still feel like aliens on this planet. We do not fit in. It is hard to be proud, when many of us carry with us a sense of shame. If you are a neurotypical (NT), I would like you to understand where this shame comes from. Because every day, however unintentionally or implicitly, you expect us to behave as neurotypicals do. This is an expectation we cannot meet.

I have been told, throughout my life, I have so much potential. I could do so much more. If only I would learn to be more outgoing. I heard it as a child, before anyone knew I was autistic. I still hear it as an adult, from people who know I am an Aspie.

In school, I was an A student. I had “outstanding” math ability, “far exceeded my peers” in grammar, and was “a prepared and excellent test-taker.” In art class, my teacher said of my talent, “Such expressions of beauty and acute perception reveal a mind and soul of rare sensitivity.”

I was a good student. Good, but not good enough.

I would not take part in class discussions, they said, because I “found the contradiction or assent of others too risky.”


I had made “a decision to not communicate orally,” which “stifled my development.”


I was “unmotivated” to discuss class material, “refused to get involved,” and “had no debating skills other than with pen in hand.”


I was disruptive, disrespectful, and a discipline problem.


Consider the effect of such criticism on a middle school age child who was also a victim of bullying by his peers. It was for my own good, they said. These flaws would hold me back in life, and what a shame that would be.

“I can’t do what you ask,” I told them.

“Not can’t,” they said. “Won’t.”

They were so sure. Scornful, even. As if my choice was obvious. As if I was sitting on a treasure chest full of potential, and chose not to unlock it to see what was inside.

No one had heard of Asperger’s back then. But I suspected that I was different. There had to be some reason I could not do these things others found so basic. It would be some 20 years before autism gave it a name.

But at the time, I could not help but develop a sense of self-doubt. A sense I would never be good enough. A sense of shame.

As an adult, learning about the autism spectrum lessened this burden somewhat, but not completely. Our world is an NT world. It will always be an NT yardstick we are measured by. Our world values smiles, phone conversations, small talk, and fitting in with the group. It values extroverts.

As an adult, I continue to receive constructive criticism, well-intentioned, to help me reach my potential. I’m not enough of a leader. I’m not assertive enough. Not engaging or friendly enough. It still hits like a punch in the gut.

I can explain now, that I am autistic, and I may not meet these expectations. I am glad to say people are more understanding, when they know. It still bothers me though, to fall short. It hurts to have to say, “I’m sorry, I can’t do what you ask.” Not because I am defiant, or think I am special, or know better than you, or am not trying. I am differently abled, though I may not look it. “Different, not less,” is still a long way from being reality.

I’m reminded in indirect ways, too, that I fall short of the NT ideal. I’m reminded, every time your conversation swirls around me, and I’m not a part. I’m reminded, when you can’t read my mood by my expression. I’m reminded, in your moment of surprise that I didn’t anticipate what you were thinking. I look like you, but I do the unexpected. I can confuse you, and I feel guilty for that.

I also must allow for the possibility that in fact, I can, and should, be working to improve my social weaknesses. Everyone is capable of self-improvement. I don’t believe being an Aspie should give me a "free pass" against anything I find too hard. Could I be a leader if I tried? Could I have better phone skills? I don’t know. I’m not sure where the line is between “can’t” and “won’t.”

On this Autistics Speaking Day, my hope is that by sharing my point of view, NT’s may understand why I will not always meet your expectations. As one of my readers recently put it, “Too many people are not aware of how far out of our ‘skin’ we go to do things sometimes. Some of them don't realize how it is to push yourself on things that come easy for them.”

It will always be an NT world. Despite the progress we have made in autism awareness and education, I still feel that I am “chasing typical,” looking for something more that will “complete” me. Is there more of my potential inside that locked chest? Or is there nothing but an empty box? Maybe all that potential is already here, outside the box. Maybe I am squandering what I already do best, in chasing after something more that might be inside.

My hope is that a day will come when I no longer have to compare myself to the NT ideal. When I can stop chasing after what I can’t do, and start going full speed ahead at what I can do well. When I am truly free to be different, not less.




To read more posts from participants in Autistics Speaking Day, please visit the AS Day blog or Facebook page.

32 comments:

  1. I really like your post. I love your blog.

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  2. Happy Autistics' Speaking Day, Matt. I'm commenting on every Speaking Day post.

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  3. Thank you for saying what I've struggled with most of my life. The things that others find so easy I have to push myself so much harder to do. I was so painfully withdrawn in school because I couldn't do these things that others did. This was beautiful. It makes me even prouder of the things that my sons are accomplishing because I know myself what they are struggling with. Thank you.

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  4. ::REPORT CARD ENCLOSURE::

    I cannot praise Matthew enough. Despite being in a class loaded with NTs (who suffer from extroversion and herd conformity syndrome), he is HIMSELF. He has found the pen to be his instrument and mastered the art of writing and drawing at such a young age! I'd like to recommend that he help the kids in our Neurotypical Special Ed so that he can teach them that being smart, shy, and individualistic are NORMAL and DESIRABLE character traits. Because the NTs just don't seem to get it. Poor souls. It's like they are from a different planet or something...

    You are awesome, Matt. Never change.

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  5. First, I absolutely loved Jennifer's comment!

    Second, I can relate to some of this. I was never given any reports of disruption or disrespect... which is what shied me away from thinking I could be on the spectrum for a while. But let me tell you something, that thing about "not assertive enough"... boy do I hear that a lot!

    Why do they think breaking out of this shell is so easy? We don't have a hammer or chisel like they do... we're given different tools to do the same job.

    Yay for Matt! He's himself and finding he's quite a desirable person to know! All who are getting to know him on this blog are the lucky ones indeed!

    Chris

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  6. About self-improvement: there's an assumption that that being extroverted/outgoing/neurotypical is superior to being introverted/shy/autistic, so that anyone who's introverted, shy or autistic (or all three at once!) who makes an effort to be more (or, at least, to *seem* more) extroverted/outgoing/neurotypical is said to be engaging in "self-improvement." So that word makes me really uncomfortable. Do I believe that everyone's capable of self-improvement, to some degree? Yes. But I think we have to ask ourselves whether or not what we're considering "improvement" is actually improvement and not just considered to be improvement because it fits in with the totally unfair "extroverted/outgoing/neurotypical is better" ideal.

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  7. Thank you, mybrainyourbrain, I'm glad you enjoyed it!

    Happy AS Day, Julian! I read your post too.

    Thank you, Forgotten, I'm glad you can relate to this yourself, and for your kids.

    Jennifer: Ha ha hah, AWESOME! NT special ed, can you imagine? Thank you for this. :D

    Thank you, Chris, I am lucky to get to know you as a reader as well!

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  8. To Anonymous #6, yes, this is what I'm saying. It is very much a "gray area" what is and is not "self-improvement" for those on the spectrum.

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  9. Matt,
    I've been enjoying your blog for a while. I don't think I've commented before, but I have learned so much from you. Your words help me communicate, because for so many years I never had words to describe myself. I'm an aspie - diagnosed at 45.

    I'm teary-eyed. These words could be my own: "I have been told, throughout my life, I have so much potential. I could do so much more. If only I would learn to be more outgoing."

    Shall I include: "more sociable", "more assertive", "too polite", and "too honest"? If only I "would make the decision" to "step up to the plate" - Oh the things I could accomplish - if only I WOULD. (sad sarcasm intended)

    I had to endure another pep-talk/ criticism just yesterday afternoon from the boss. How does one respond to such a "pep-talk"? It is so frustrating to know that a certain response is expected, and to be unable to figure out what that expected response may be.

    It is very shaming to be told that it's simply a choice - when I seem incapable of "choosing" the desired behaviour. Your post shone a flashlight down my own memory lane. Ouch.

    And thanks. It helps to know I'm not the only one.

    Danyelle

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  10. What a great post.

    It made me sad, too, because I hear these same things said about my son, in slightly different words. Even though he's in a Special Ed program with an IFSP, teachers and therapists use the word "noncompliance" a lot. Or his refusal (inability) to do something will be described as a "behavioral" issue, as in "I know he can do it — it's just behavioral."

    My knee-jerk response in all these situations is to tell them all to fuck off — how do they know what he can and can't do, or his reasons for not doing something? And why is every refusal interpreted as "noncompliance" when there are a dozen equally valid interpretations: Maybe he literally can't do it—just physically, neurologically can't. Maybe he's not interested, or maybe the crappy toy you offered as a "motivator" is not as motivating as you think it was. Maybe he resents your fake condescending tone of voice, or maybe he dislikes being told what to do. Maybe he didn't understand the request.

    Mostly I don't say this stuff out loud, since I'm a conflict-avoiding introvert myself, and because they're the professionals and they Do This For A Living. And because I know that eventually my son needs to learn that there are times when it's expedient (or even necessary for survival) to follow the rules, no matter how pointless or ridiculous they are.

    But this post fills me with renewed willingness to challenge other people's assumption of "Not can't; wont."

    Thanks for writing this, and for everything else on your blog. I can't wait until my son is old enough to read it.

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  11. Hi Danyelle, thanks so much for your comment. Like you, I thought I was the only one, and it means a lot to know others can identify. To your question, how to respond to your boss, based on my own experience, I would tell your boss you are an Aspie if you have not. You may need to explain in detail how that affects your ability to do the job, with specific examples. Hopefully, your boss will be more sensitive and accommodating. At the same time, offer to work on those areas where you feel you are capable of improving. I am sure you can find a middle ground. Good luck!

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  12. Hi Sarah, I can certainly understand where you're coming from. My hope was that things had gotten better in the schools in 20 years, now that we have better diagnosis and IEP's and services. I can see we still have a long way to go, so all the better that I wrote this post. Please do continue to challenge those assumptions. Thanks and good luck!

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  13. This is an incredible post and it really speaks to a lot of my experiences growing up as well; thank you so much for posting it. My son seems to have the exact opposite reaction from teachers lately because he wants to participate and he is a very chatty Aspie and sometimes he gets the message that he should be quiet, be good, behave.

    It's like a lose-lose situation that no one can win: keep quiet and keep your head down or speak up and risk being told you're too loud. It's a middle ground that I wrestle with myself too. Thank you so much again, I'm really thrilled there are so many stories being told today.

    - Hanne

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  14. Hi Hanne, isn't it the truth? "Just stay inside the lines and don't color outside." The middle ground is a fine place to hide and be non-threatening... and to not be an individual either.

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  15. I had a similar comments on my report card from the 6th grade-it basically said I had a thirst for knowledge and I would rush through my work so I could get back to reading and doing the things I liked and that when I made mistakes I get very upset and I didn't also like to work with the other kids-I was also horribly teased and bullied back then and I still feel the pain and bear the scars from that time in my educational experience-thank you for writing the above article-it hit very close to home for me.

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  16. Hi C.R., I am finding today that many of us have those scars, but isn't it good to know we are not alone?

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  17. and in some ways the hurt and pain continue to this day-its now grown ups and peers doing the bullying and teasing-it never seems to end for me-what in the world did those of us on the spectrum do to be treated like this?

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  18. This is a tremendous post and gave me a lot to think about. When I think about my son and all of the unexpected non-NT things that he does, none of them are inherently bad or wrong, but we have created a society that says they are wrong because they are not what most of us do. (Did that make sense?) It's incredibly unfair that he, like you, has to chase typical (great phrase, by the way) just because there are more NTs than autistic people.

    It is going to take me days to read through all the ASDay posts, but I know that I will learn from every one.

    Thank you for being you, Matt. I'm sorry that you have those scars. You are wonderful.

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  19. Thank you, Stimey! Yes, you perfectly summed up my premise - anytime there is a majority, that majority will set the expectations of right and wrong for all. I too am still going through the AS Day posts, and gaining new insights, and learning from the comments of you readers.

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  20. I only just realised I am an Aspie and the joy of being able to understand other people (Aspies) instead of wondering what everyone is on about - It is a revelation. I have tried all my life to fit in - I am a chatty, low to average IQ Aspie (bummer - not a gifted part in sight). Guilt is the thing I have always felt - never enough no matter how hard I tried. Since reading your articles and those of other Aspies, I am beginning to feel free. Keep writing your wonderful stuff.

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  21. Thank you! I'm sorry you relate to the guilt, but hope you continue to feel free as you connect with others.

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  22. Awesome post, Matt! I truly enjoyed reading it! Skillz!

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  23. Hey Matt,

    what a great and touching post. my son is an aspie, and maybe me a tad. it was very helpful for me to hear how you felt when people told you that you have so much potential. i tell my son that in hopes that it makes him feel better, but now see, that maybe it doesn't. wow... it's frustrating as a mom to know how sweet and smart and funny my kid is.. and that even though he avoids most social situations, how lonely he gets. that's one of the hardest parts...
    thanks so much for what you are doing...

    Cindy

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  24. Hi Cindy - Yes, "you have so much potential" is a longtime pet peeve of mine, at least as others applied it to me. It was a veiled way to say, "you're not good enough." If it was meant to motivate, it had the opposite effect. But I can understand how you want to encourage your son to do better where he can.

    Readers, what has been your experience with being told you have "so much potential?" Do you have any suggestions on giving positive encouragement?

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  25. "so much potential"... oi. I can do so well and in school had good grades... but sometimes I feel like people are telling me that I should have a paid off house and everything by now... I have so much potential and could be anything I want to be... why is being me not good enough?

    Chris

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  26. I loved reading this blog! I've suspected for some time now that I'm an Aspie, but never really faced it until now. I've put so much effort into learning the NT's way ever since I discovered there was a problem with me, I was 12 then (27 today). I've done so much work on myself that it's hard to distinguish me from the NT's now. My eyes opened 2 weeks ago when I started to wonder what could drive a person to be public about having Aspergers. "It isn't so much big deal", I thought, "so why, telling everyone about it like you're retarded or something? I'm definitely not retarded." Then I realised that society hasn't been fair with me. Did I really need to go through so much stress and other emotional suffering to become like "them (NT's)"? Was that fair? And is it fair that I must feel bad and ashamed whenever I do or say something inappropriate without knowing? Is it my fault? The answer is NO!! Society must accept me the way I am. I will never be able to turn myself into a NT, no matter how hard I try. I believed I could because I saw so much progress in the past, but now I see I can't and I must accept myself the way I am and society should treat me fair with regards of this born-with deficit of mine. I'm done playing this stupid game, it started to drain my soul couple of years ago after progress got slow.

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  27. Hi Mamiko, thanks for your sharing your story. Many of us work hard to adapt and to "pass" as an NT. And disclosing does make sense when we find we are still seen as different.

    Your frustration is completely understandable, but remember that NT's for the most part, aren't being unfair to us on purpose; it's that they don't understand our perspective. My goal with this post is to give them a window into how we see it.

    Good luck to you, and I hope you can find a sense of belonging and healing among the online AS community.

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  28. I hadn't thought about this entry in a way relating to my religious beliefs until today. For those of you who do not agree with my beliefs (Catholic, to be specific), please just bear with me. I feel I have a valid point to make.

    To start with, I realized that this ASDay is on the same day as All Saints Day (talk about irony, not only the date but the initials as well!).

    Even more so is a specific concept within the Christian beliefs (though I have found it to be considerably more expressed in the Catholic church)... this concept being that we are all called to join together as the body of Christ on Earth. The body. Not just a specific part.

    If we all were to be His feet and move around, we would have no one to see where we are going or what we could do. No hands to hold, no arms for hugging, no ears for listening.

    The same can be said for the AS community, as well as the NT community.

    Really... does it make sense to expect us all to be alike, to be the same body part? Socially speaking - wouldn't it be absolutely awkward if we were all doctors, but no pharmacists? All students, but no teachers? All speakers, but no listeners?

    The Catholic Church - not unlike any other denominations, mind you - has had it's trouble. But there is so much knowledge and wisdom hidden within (at least for me).

    I'm not requiring nor asking that you convert - any of you. That is perhaps the most personal decision anyone could make. All I ask is that you think on this particular analogy. If even 1 person has a new, positive outlook because of this - well then, I have succeeded in making a positive change for someone besides myself.

    What more could I ask for? After all, isn't that the quest we are all on, especially with ASDay?

    Chris

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  29. Guess I got more loquacious than I thought on my last comment!

    Chris

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