The [autistic] Child is father of the [autistic] Man
July 5, 2006 by Kristina Chew, PhD
Filed under Health
On one day every month, the B5media.com Science and Health channel chooses a theme to blog on. July’s theme is children—a topic I, as am autism mother of a nine-year-old, blog on frequently at Autism Vox and at Autismland (aka “Charlie’s blog).
Too easy, I thought at first.
And then: Well, no.
Autistic children become autistic pre-adolescents, autistic teenagers, and—for most of their lives—autistic adults. There is probably too much written and studied about autistic children and, indeed, very young autistic children: Why is so much attention in the media and even among parents devoted to the causes of autism, such as the MMR vaccine theory? Even the term “early intervention” implies that, the only time to “intervene” is when a child is young. If the child still clearly has a lot of challenges and needs a lot of supports as he ages—as Charlie does and will—-it is neither so pressing to help him, nor so worth it, it is implied.
Indeed, autism mothers I know have said they don’t want to read writing about or by autistic adults because they find it “depressing” to think of when their children will be that age. In Autismland, I’m afraid we pay too much attention to children of a very young age. Charlie, as I have written on Autismland, has already (when he was at the ripe old age of eight) been the victim of age discrimination. Charlie learns best in certain highly-structured school settings that use a methodology called ABA (applied behavior analysis) and there are some schools (all very small) in New Jersey that specialize in this sort of autism education. We were not able to get three-year-old Charlie into one of these schools as we were living then in the Midwest and—-despite ample proof that Charlie thrives in an ABA setting—we have too often been told that “only three-year-olds” or “only children under the age of five” would be accepted.
And, as I have tried to write on Autismland, Charlie’s life is an example of how you can never, ever, give up. You never know at what age a child—an adult—may say that first word, be able to read five sight words, ride a bike, fall in love, or tie his shoes. You never can know and you can never stop trying and hoping.
For instance.
Charlie and I went shopping at the grocery store before dinner. He was very nervous on the ride to the store and kept asking “sushi, sushi, sushi dinn-nerr.” I directed him to get a basket which he duly carried all around the store as I (and he) put things into it. Twice he tried to make for the door and he came back (”we still have to get the fish!”) each time, peaceful-easy. A year ago Charlie would have been racing, and raging, in the aisles of the store, trying to open up packages and kicking and yelling in Terrible Two fashion when I “caught” him. Charlie held the basket with both hands as it became heavier and then we turned a corner and ran into another autism mother, whose skinny son has braces, a goatee, and a few inches over his mom.
We introduced the two sons we had talked about so much to each other at special ed parent meetings. “I hear you’re going to college. Where are you going?” I asked my friend’s son; as he said where, his mother shot me a significant glance and a big sigh: Over the past few months, she had told me regularly about her son’s college search, his winnowing his choices down to two schools, and his preference for the school further away.
My friend’s son will be attending the school closer to home (but in another state—-I cannot imagine it!).
Charlie carried out a bag of groceries, loaded it into the back of our stationwagon, unloaded it. Ate, took out the garbage, put on his pajamas, giggled in bed until I mentioned the “yellow school bus” and his new teacher, and what he might have for breakfast.
“Goo night!” said Charlie.
If I may insert a bit of poetry about my lovely child and his growing-up ways from Wordsworth’s My heart leaps up when I behold:
“The Child is father of the Man.”
And Charlie will be a fine man…
And your boy too, like his dad!
Beautiful, Kristina. Simply beautiful to read.
Wow. Pretty amazing! What a beautiful story. And I like what you said about never giving up.
I’ve seen first hand children with a later diagnosis (7 years and 8 years) make huge ground with the right support.
What makes me teary is this: I’ve listened, in shock, to parents that have made mental end dates to doing all they can to help their children. Really! Once I innocently asked a parent “what their child’s services will be like next year, how are things going?”. Their reply, right to my face “well, we’re going to try everything for ONE more year, really push, and then that’s it.”
That’s it?
Oye Vey.
You don’t give up.
I see different sorts of progress from week to week. It’s going to take years to get it all together, I’m sure. And I’m just trying to enjoy it right now. If there’s some progress, and he’s not miserable, I figure we’re on the right track. (Misery seems to be related to how much grief he’s getting from his siblings, which is how things are going for his sister, as well; she has the disadvantage of being the smallest, on top of it. His brother is more prone to being more frustrated with things, rather than people, but causes his fair share of misery in his siblings. They all love each other, but it’s so hard to share toys and space sometimes!)
Hi Kristina,
This is my first time visiting her. I came via the Carnival of Family Life.
That is such a good point about how children with Autism become adults with Autism and still need just as much support and attention.
Thank you for the great reminder.
I’m a mom of a nearly 11 year old autistic daughter. I don’t read too much about autistic parental experiences that I care for. For some of the same reasons you listed about how people think that life is over or it’s not worth trying after the child is past early intervention or that all autistic children are savants, or all that it takes for each of them is a diet change. Most things that some say changed their child completely do not work for my child. So most times I am left out.
The way you wrote about Charlie brought tears to my eyes and reminded me of shopping with my daughter. I love to see the changes in my daughter. And I always think about the day that she will carry on a conversation with me, tell me how she feels or falls in love. I know those days will come.
Thanks for writing to parents like me