The 7th Fact You Need to Know About Autism (#441)

In the midst of talking to a student about applying for numerous fellowships and graduate school programs, I paused and asked:

"But what about if you don’t get any of these?"
The following silence was awkward and during it, another question came into my head:

"What if your child has something wrong with him?"

It is not a question that I have heard at all recently and I cannot even remember if I was asked this specific question over nine years ago, when I was expecting Charlie and when Charlie was a baby. I do remember taking the test to see if our unborn Charlie had Down’s Syndrome and—I could feel him kicking and back-arching, already—thinking, "Well, of course I’m having him, whatever the test results." I do know that I knew 100% nothing about autism back ten years ago in the fall of 1996 and the winter and spring of 1997, and that there would have been a downright uncomfortable silence if someone had asked me "what if that ‘something wrong’ is autism?"

This morning I had come across a list of 6 Facts You Need to Know About Autism from I could imagine my nine-years-ago-self skimming the questions and finding way to say "that’s not Charlie" about each of them: Famous last words. I am sure, back then, I was engaging in magical thinking, always finding another way to explain away Charlie’s not doing X and Y until that awful moment when a parent sees what she has been denying.

Something is wrong. And the planned array of possibilities is sorely, terribly lacking for the reality before you.

I should say that, while that moment can be awful, it also can be one of true relief, when you finally know that there is a name for what your child has, that there is hope in quantities, that you will see your child who doesn’t have this, that, and the other skill acquired, ask you for help opening a container of cantaloupe, curl up behind you on the couch and press his face and feet onto you when you are home from work, and steal a certain light brown sweater to twist in his hands, grinning. Charlie had had a happy visit to the aquarium today with my parents—they noted how much he seemed to be taking in as they walked under a shark tank and got up and close with a hippopotamus—and an ABA session with the therapist who always greets him with "hello, my friend" and who Charlie will miss after his last session tomorrow (said therapist—Charlie’s first guy therapist—is studying to be a teacher and his own school schedule of classes has changed).

That is, the 7th fact to know about autism is that life raising an autistic child can be very, very good. It will be different; you may find yourself scheduling EEGs not soccer game practises; you may find yourself doing things you thought you could not do—quitting jobs, moving halfway across the country and into the basements of relatives. You will know, it is all worth it, and then some; that it is an honor to be the parent of such a lovely boy and to be charged with taking care of him.

You will find you have answers and hope.

To break the silence, I quickly said to my student, "But there’s lots of things you can do," and he was quick to mention jobs that he could apply for and other alternatives.

"I just had to ask," I said.

"Of course," said the student.

Possibilities shine, if we can only know to see them.

9 Responses to “The 7th Fact You Need to Know About Autism (#441)”
  1. tara says:

    There is a way around the darkness of the initial diagnosis. After that, the navigation within this disorder is not always easy, the way is not clearly marked, but we’re finding our way.

  2. Christine says:

    Funny, I’ve had a similar line of thought running through my head for the past couple of months. When I was pregnant I did not take any of those tests. It won’t change the outcome I thought so what is the difference. But those were brave thoughts from someone who really couldn’t conceptualize of anything bad affecting my child. Disability was something I could look the other way from because it happened to *other* people.

    Great post, Kristina. And yes, I believe that 7th fact is the most important!

  3. Erin says:

    Thanks for this great post, it brings tears to my eyes on this the first day of preschool special education for my 3 year old with PDD-NOS. It’s true about the relief. After a year of anxiety, denial, and crying, in some respects it was a weight lifted to finally have a name for what was happening to Thomas.
    Thanks again for a great blog.

  4. Aspie Dad says:

    “Magical thinking.” Exactly! Thank you for that term, I can see he using it a lot… 🙂

  5. Hsien Lei says:

    Life is full of options and opportunities but it takes a lot of courage to face them. Courage is something you are definitely not lacking, Kristina!

  6. On occasion I have met autism parents who have started a conversation by saying “I am so glad to have you and so sorry that we had to meet under these circumstances”—i.e., of having an autistic child.

    I would not be writing here, nor doing what I am doing, without Charlie and these years in Autismland.

    I am _so_ glad to have met all of you digitally, virtually–I’m never sorry.

  7. Ian Parker says:

    This may sound like a strange comment, but…

    I remember my wife regularly saying that we should enjoy the Bear’s childhood, because it passes so quickly. One of the things I’ve noticed just recently is that it is not. I don’t mean that it is dragging, or moving too slow, but rather, that the ‘cute toddler’ phase is lasting a lot longer than we expected, and we continue to get joy from the Bear learning new things that others take for granted in the frenetic pace of growing up.

  8. Meg says:

    I love your post today – I think a lot of us out here are going through the stress of the start of the new school year for our ASD angels. There have been so many posts of late about anxiety for all of us, and reading your post reminds us how much we have all gone through, and will go through with them. Through this process, the only thing we would change is easing the struggle, but never change our children. They are our hearts, and you so beautifully point out, help us see the way of things that are sometimes masked by the less important. You are a great writer, and I always enjoy reading your posts.

  9. Thank you, friends—-a day care teacher a long time ago called Charlie “a quiet leader,” and while at the time the phrase rang oddly—Charlie was clearly not developing like the other children; he was _too_ quiet—-the phrase resonates now.

    I used to worry that Charlie might “never grow up”—might never talk, be able to live on his own, take care of himself. I still have plenty of worries but have been thinking there is something to be said for more times of a certain sort with our boy. As Jim said while we were at the beach, how many nine-year-old boys still hold their dad’s hands….

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