On losing the island, gaining the continent

P1010876Showing his niece the well-prepared garden beds

This weekend, for the first time in a long time, I got to spend a lot of time with my brother, all by ourselves.

Life intervenes and sometimes it will be a long time before adult siblings do things with “just” themselves, no spouses or parental units or children around.  He and I had a great time.  This wasn’t always the case when we were children in the same house, certainly, but we both really looked forward to his spending the weekend on the farm, and we both thoroughly enjoyed the visit.

It is with much happiness that I recently read that the DSM-VI, due to come out in 2012, will focus on the Autism Spectrum Disorders as just that:  a disorder that has a wide spectrum.  The world of shrinkdom and the general medical, educational and, indeed, American people will then just concentrate on this one thing.  Autism.  It’s a big flipping tent, people, with a strong emphasis on “spectrum.”  Gone will be the categories of Asperger’s and P.D.D.-N.O.S., little islands in the field, one stating a putative intellectual superiority, the other a not-quite-square-peg-but-close-enough nondiagnosis.

You see, my brother is autistic.  Not Asperger’s, not P.D.D.-N.O.S., not retarded, not a savant, but autistic.

One of the things that has irked me terribly is that most discussions of autism have tended to focus almost entirely on the cute, young, odd, mostly male children affected by it.  It’s a communication disorder, and I find it entirely ironic that it has been communicated to be a developmental disorder solely found in very young children.  My brother is in his early 40s, folks; though it showed up when he was a toddler, it’s still here!   Thank goodness for Rain Man, is all I can say, as people might never know that autism affects adults as well.

What is entirely interesting to me, in watching my brother, is that the disorder has ebbs and flows itself:  it, indeed, also follows a spectrum along any individual’s life.  Many of his autistic peculiarities have receded with time, residuals of a different way of being.  Gone is the hyper-number thing he had, gone is the full knowledge of the commuter train schedule, gone are many of the odd other parlor tricks he could pull.  What remains is an encyclopedic knowledge of certain events in his life (e.g., “Sister, on May 11, 1975, you said this to me,” etc.) and a somewhat odd ability to be able to tell you what day of the week anything happened.  This latter remains in parlor-trick status, as his one icebreaker is “What’s your birthday, and the year,” and he’ll spit out that you were born on a Wednesday.

P1010838Some aftermath

He’s still the best help I could ever have around here.  Uncomplainingly, he helped me winnow over 50 pounds of beans, and move about 70 wheelbarrowloads of mulch about the garden.  He’s shelling Christmas Limas with his niece as I type this, while I’m in a kitchen redolent of dehydrating cherries and roasting chicken and bread.

He’s no island-dweller.  He’s just who he is, and he lives under the big tent that is Life On This Planet, with all its wonderful, wildly varied human forms.  And I am so glad he’s in my life.

7 responses to “On losing the island, gaining the continent

  1. Have you read Born on a Blue Day?
    I have always been passionate about research on autism and worked with two boys for four years before going back to school to finish my degree in teaching.
    I have a child now that fits under that tent, and I love him to pieces.
    Anyway, back to the first question, I continue to read books to educate myself on what experience my child in class may be having. Even after years of reading everything I can get my hands on, this personal account of an autistic young man really helped me gain a better picture of how my classroom might look for my little guy.
    It is very rewarding when a parent tells you what an angel you are and how their home life has changed for the better with a positive classroom experience.
    So glad you can love your brother just the way he came and model that for your girl.
    Don’t we wish that were true for everyone?

  2. Lovely post! As a single child…I always miss the reality of having a sibling so I could share some of the burden of the day. I am sure, he is glad that he has you under that big tent.

  3. 70 wheelbarrow loads! You really had some good help. Thank you for sharing this information, my mom worked with autistic children for many, many years but after reading those links and a few other things I was surprised at how little I really understood about autism.

    My mind works the exact opposite as your brother when it comes to remembering dates, I can’t remember any dates ever without writing them down…not always a good thing for a married man.:) It sounds like you had a wonderful weekend.

  4. Very big tent. I’m sure you know about Temple Grandin’s writing. I found her through gardening channels, but her viewpoint is very interesting.

    That’s a lot of work — I cherish my time with my siblings and hope my children feel the same way, someday.

  5. My nephew in Liverpool NY is Autistic.My sister in law is a special ed teacher and my brother and her noticed his ways early so he is really a pretty normal young man that likes his space seeing as he has three sisters to live with.He runs cross country and really looks forward to each spring when he gets together with uncles and male cousins at the NCAA frozen four hockey tourney which my brothers and I have done for a good ten years.I don’t go every year but the kids love it and Kevin really likes it and opens up.

  6. Kimberly, how wonderful; *I* think you’re an angel, too. I haven’t read that book, thank you for recommending it. It’s kind of funny: I don’t have much of a desire to read much about autism, having experienced it as closely as I do. It was tough growing up with him and not having it as handy a label as it is today: everyone back then remembered the After School Special about the autistic boy who spun plates and they’d look at my brother and would say “but he’s not like that,” and that in itself is the mystery of the problem. It is no one-size-fits-all, as everyone exhibits varying forms of it, and some are absolutely life-altering.

    WF, well, there are good sides to being a singleton, too (I am hoping as the mother of one). He’s fun to have around.

    Mike, you can’t believe how industrious this guy is once you point him in the right direction: he’ll just do something until he’s told to stop. A great helper that way! And yeah, I had been hording leaf/grass/compost mulch all summer, about 5 yards’ worth. And there’s more out there! But indeed, even though it was a wet year we have a LOT of beans.

    Stef, yes, I do know Temple Grandin’s work. It’s funny, talking about how different autism is, in that her desire to be held tightly (sensorial overload is very common in young autistics) led her to create the cattle chutes that have humanized the slaughter industry…my brother HATES being held, hates all bodily contact, in fact. But indeed I am sure your kids will all grow up to appreciate each other; you’ve modeled great behavior with your sis, after all.

    John, one thing I do know about my brother that holds true with your nephew is how much they like the company of male relatives, and men in general. My brother gets to go to Notre Dame games with his uncles, for example; lots of male bonding going on. I hope you can make it this year: it would probably mean the world to him.

  7. I remember that movie well, Son Rise was the title I believe.
    I read recently that when you know a person with autism, you know just that- one person. Doesn’t mean you know much about autism, as the spectrum shoots it’s light in many directions.
    The most meaningful thing to me in the book was what the author hears in a conversation. Just reading his account, stepping in his shoes, has led me to be significantly more patient when my guy says, for the sixteenth time, “Now, wait!” ” What do you want me to do?”
    The author was a touch-me-not too.

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