An autistic adult noted, "I'm an adult autistic and don't think I have said that it's not a disability now that I've got more perspective on coping."I commented back that, "I think it's possible to have a disability that has positive aspects. I know autistics who consider it disabling."And another autistic commented that, "I love my#autism. And I acknowledge that it is#disabling. Esp. sensory issues and linguistic processing."
This conversation turned out to be one of intense interest to me even more than would be apparent thanks to this sudden non-sequitur (to me) from TH this morning as we were doing schoolwork:
If I could make it happen, I would make it so that no one ever has autism, ever again.
This is from the same child who, only a few weeks ago, sent the following to an autistic boy to show his support:
Based on his statement this morning, my son is clearly grappling with his own reality--something he cannot change--while still not wishing his reality on others. I'm sure my face--well, maybe I'm not sure--registered the shock I felt from his observation. I asked him to elaborate, and he did.We talk about it all the time, my parents love and accept me the way I am. But there are others that are like us. Hundreds. Thousands. Maybe even millions! But we must learn to love and accept ourselves! It doesn't matter if were different, it doesn't matter what people call us! And it doesn't even matter when they insult us! Being different is hard at times, but being different is a gift, too! It makes you unique in a good way! So take this advice, Noah! From now on don't feel ashamed or useless! Whenever anyone insults you or treats you badly say: I'm proud of who I am! Or I'm not perfect but nobody is, and I'm a good person! Now, you know that it doesn't matter if your different, but it matters how you treat yourself and how others treat you!
I can tell that much of what he was saying arose from his cogitations after watching the Lesley Stahl 60 Minutes segment on autism last night. While the narration of the segment and commentary from Stahl left something to be desired, TH clearly felt a connection to the children in the story. And when Temple Grandin had her brain imaged, he was exclamatory, wondering what was different, how it was different from what they kept calling "normal" in the segment. (As an aside, when did Grandin become someone who has "Asperger's"? I though she had a language delay? I don't buy into the diagnostic divisions, but the current distinction is primarily the language one.)
He expressed to me how hopeless he feels about ever making friends. He doesn't want people to have the same struggles with social interactions that he has. He doesn't want people to find it hard to talk (not a problem for him) or not be able to talk at all. He's anxious and a little sad that he has "only" ever made two friends, and I think he's concerned that even those two may be slipping away thanks to the twin gulfs of distance and time.
Sigh. I know that feeling alienated and isolated comes with the territory not of being autistic, per se, but of being pre-pubescent, peri-pubescent, damned near pubescent. He's expressed other anxieties that he doesn't relate to autism, talked to me about just not feeling quite right in his head, feeling strange and a stranger in his own mind. That sounds alarming in black and white, but I think what he really means is that he feels confused. Who wouldn't feel confused as middle school approached, as puberty's shadow grew on the horizon, complete with all sorts of (to him) horror stories (not from us) about the foibles and confusions of adolescence?
But he's also grappling with being different. He knows he's different. One of the first lucid questions he ever asked me was when he was in kindergarten, again a seeming non-sequitur: "Why am I so different from everyone else?" It was heartbreaking at the time because he was collected enough at that moment to ask a question, and it was the first one to come to his mind. But the answer, "Because your brain is made differently. That's not a bad thing, but it is different," was one that no child--but especially our child--was going to encompass without considerable repetition and explanation. Yet only a few weeks ago, he was proud enough of his difference to write the way he did, to support someone else with a similar difference.
A couple of weeks ago, Dubya observed that "The big difference between turning into an adolescent and turning into a butterfly is that with the butterfly, no one can see you." TH's dual specters of being different (autistic) at a time (adolescence) when many people simply don't want anyone to notice them are a potent combination acting on a plastic, impressionable, sensitive mind. One that's so sensitive, he wouldn't wish this combination on anyone else.
So, we talked. We always talk, although for once, we weren't having an Important Conversation in the car. We talked about friends, how many you need, how brothers and family can be friends, too. How college, with the way it (in theory) raises appreciation for knowledge and reduces emphasis on the finer points of social interaction, will be a place where he'll find friends, find his own. That autism isn't going to prevent that for him. We all have our people, somewhere out there. It just takes the right environment for the good to outweigh any negatives. We even talked about how autism may well underlie some of the way that people advance in culture and technology, how autistic people, in spite of the pain that some sectors of society may inflict on them, are important to humanity, too.
He understands that his autism has benefits, and he understands that there are negatives for him, too. Today, I think hormones and 60 Minutes and maybe a bit of loneliness on a beautiful fall morning led to his expression of a wish that whatever his reality is, he wouldn't wish it on anyone else. Strangely enough, his vocabulary word today was "catharsis." Thinking that perhaps scribbling out his worries in his journal might indeed be a catharsis for him, I had him write a second entry for the day. And all he wrote (given here with permission) was, "I wonder if I will be different in college." That's it. That was the entry.
No one said adolescence would be easy. It almost never is with that much change, the epic reconstruction and rebuilding of a child into an adult. I know mine was a mess for me, from the inside out. But it's looking like autism and adolescence may be a synergistically painful combination for our boy. Insights and experiences from autistics in the middle or on the other side of that metamorphosis are welcome.
11 comments:
Oh, TH, my heart hurts for you right now. I can't promise the future will be better, because no one can know that, but... college was so much better for me. All the people who are still my best friends, I met in college.
I think the kind of people who are worth being friends with are gonna think you're awesome in college.
Dear TH:
It gets better, my young friend. (can I call you that? Will you be my friend?)
And when you get older and bigger and have choices for friends who don't live in your neighborhood or go to your school, you will discover a whole world of people who think you are amazing, just as you are. Some of them will be autistic, some of them will have different brains in other ways, and some of them will have NT brains. They may not be like each other much at all--except that they have good taste in friends.
It's hard to wait, but the people who will come into your life in a few years will be worth it. And more importantly, they will know YOU are worth it.
I'm glad it get's better, because right now we're in the middle of the same thing. I have two adolescents on the spectrum who grapple with many of the same things. I just want them to reach a stage of acceptance of who they are -- wonderful, complicated individuals.
Catharsis can be such a beautiful thing, and I think you are smart to encourage TH to write out his thoughts and feelings. I am the parent of a special needs child, myself, and I find that writing helps me find my own balance.
Another part of your blog that stood out to me was your paragraph starting with 'So, we talked.' Talking can be just as much of a catharsis. Keep up a consistent dialogue and you will help TH more than you know.
I love this post. You could be writing about our oldest son right now. He is starting to really see the difference between himself and others.
This is heartbreakingly beautiful. And I especially love and appreciate the first two comments.
This is heartbreakingly beautiful. And I especially love and appreciate the first two comments.
Man. The period I was in secondary education (12-18 here) was... beyond horrible. I wouldn't say that I wouldn't wish autism on anyone else, because that would not be accurate (I do consider myself disabled, by the way, and I'm also happy being who I am), but I would definitely not wish the life I had from about 12-18 on anyone else. Among other things I was deeply depressed (with suicidal tendencies).
A lot of it could have been different though. I knew I was different but did not know why or how (I knew about autism but one brilliant "expert" had written down in a book 'autistic people do not have a sense of humour', so I spent years after I had already learned that I was autistic, convinced that I couldn't be), and I searched desperately for a why. I was bullied badly. I struggled with school, not just the social environment (I was underchallenged in some subjects, but severely overchallened in others, the main thing here being that that went unexamined and I received no support). I desperately longed to be in a special school with people like me, instead of going unaided in a 'regular' school. (It was actually not even a regular school, in that it was rather tiny. We already knew I wouldn't do well in one of those massive schools with a gazillion people in a classroom). I had no friends for a very long time.
I also have an anxiety disorder that was absolute hell for me during childhood and puberty. That also went untreated in any way. We did try to find help, but professionals dismissed it (they meant well, with stuff like "you don't have to be ashamed of this, everyone feels afraid sometimes and that's completely normal", but they were utterly useless).
And I did do better in university (no college here). I felt better too (though I do have to mention that I did not finish it. Twice. No aid again). But you shouldn't have to wait for that. The adolescence/puberty period is probably always going to be turmoil and difficult, but it shouldn't have to be horrific. I know not everyone's is. And a lot of this stuff could, in hindsight, have been easier and more pleasant for me.
I thought of something else, too, TH, which is that, while in many ways you're socially behind your peers right now, in other ways, you're probably more mature. You've had to be more self-aware and resourceful. You've had to be stronger, even when it felt like you were weaker.
So in some ways, you're waiting on your peers to grow up in order to be able to be your friends. And they will.
I know that doesn't make the waiting easier.
Oh, I feel so bad for TH. I had problems a lot like his, when I was maybe between the ages of 11 and 14. I was just learning how much of other people's social interactions I could not comprehend; particularly painful was the revelation that some guys I had believed were my friends were really just laughing at me the whole time. Then, later, the more aggressive bullying came (7th and 8th grades) along with my discovery of the one thing I *could* do that always seemed to work, socially, which was to make people laugh by doing silly things in class.
Even when you know all your life that you are different, and *HOW* you're different, somehow all your peace with it, your pride in it, flies out the window as you approach puberty.
It improved a lot for me in high school; I wasn't bullied anymore (mostly because I no longer saw the bullying group anymore), I made plenty of real friends, and found lots of cool stuff to do. And it got even better in college, as my understanding of other people and my own emotions deepened, and I became able to express more, and have more satisfying relationships. I am still autistic, obviously, and still impaired in some ways (though the things that seem to have the greatest effect on my ability to do things day to day are executive-functioning and sensory processing issues, rather than a lack of social or emotional intelligence). I also retain everything that I liked about being autistic when I was younger, like my imagination, my emotional self-sufficiency, my slow, deliberate way of thinking, speaking and acting (I am basically immune to stress; I just can't be hurried), my attention to pattern and detail, and my delight in sensory stimuli.
I hope this is what lies ahead for TH.
Being disabled doesn't mean hopeless or unable to have a good life. I'm disabled - hearing impairment - and I'm a professional. I teach online and love my job. I'm also mom to one neurotypical and one with Asperger's. Both are wonderful young adults, disabled or not.
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