Friday, March 27, 2009

Answers to Questions about Autism

I stopped at the store and bought two potatoes yesterday, ready to come home and blog, complete with pictures, about my famous healthy French fries alternative. But when I got home, I discovered that my son Wayne had posted answers to his daughter's senior-project questions about autism on Facebook. Those answers, especially the last paragraph, made me so proud, I figured the potato recipe could wait. I want to share Wayne's posting with you.

Here's what Wayne said:

My daughter’s senior project is a paper on Autism. Autism is a subject that gets a lot of attention at our home. In preparation for the paper, she asked questions directed to all members of the family and to friends. My answers to her questions are as the father of an autistic child, for my five-year-old son, Wayne Jr., was diagnosed with autism when he was three.

I am listing the questions and my answers below:

1) Do you feel you had enough information on autism when your child was first diagnosed with autism?

I did not have nearly enough information when Way Jay was diagnosed. I did not know what autism was, or what, if any, the treatment was. There was a stigma about autism. It seemed to be some terrible diagnosis that, if it was applied to Wayne, would turn him into some lost cause. What I learned is that autism is a neurological disorder that affects a person’s ability to learn and process. There are also social challenges for people on the autism spectrum. Wayne Jr. is fairly high functioning: he is just beginning to develop verbal skills, and he is not nearly as socially challenged as many autistic children.

2) Was it difficult to find resources/services available in your area?

Yes and no. For the most part, we have had very good luck getting Wayne the services that he needs. The waiting list to get into the
ASTAR clinic in Seattle was only 3 or 4 months (as compared to the UW program that had a year wait for the evaluation). Also, in Reno, we were able to get a grant from the state that got Wayne a lot of one-on-one therapy.

3) How old was the child when he/she was diagnosed?

We began to suspect something was wrong with Wayne when he was 18 months old. He displayed some repetitive behavior, he had limited eye contact, and he was not developing verbally. At two years of age, we spoke to our pediatrician and said we were worried about Wayne’s development, but we were told to be patient and see if he showed improvement in the next 6 months. The rest of the story would take some time to cover, but in a nutshell, we did get Wayne in to see a neurologist, and he was diagnosed as having autism when he was three years old.

4) What is your relationship with the child?

Wayne is my son.

5) What type of things do you wish you had known or are you still wondering about?

Of course I wish I had knows more about autism when Wayne was diagnosed. But that’s the challenge of being a parent. I could say something similar to that about each one of my children. Not that any of the older kids have presented me with a challenge as big as Way Jay’s, but with each of them, I could sit back with the luxury that hindsight gives us and say, gee I wish I had known more. I think that I was very blessed to have a wife that was so good at getting good information. She was tireless in her quest for information on autism.

As far as what do I still wonder about? I suppose my big wonder is what caused this? To look at Wayne, you would think that he is perfect in every way. He is a beautiful boy, yet somewhere in his brain there is a disconnect. I wish I knew why, and I wish I could do something to change that.

6) Do you wish there was something to inform you of what to expect and how to handle things when the child was first diagnosed?

In this area we were lucky. The ASTAR clinic has a wonderful follow-up program for the families of the children that are diagnosed at their clinic. We had lots of support from them, and they spent many hours working with us and educating us on what we could expect from Wayne. Of course, every child with autism is not the same, and so every outcome is different, but there are many things that are common to people with autism, and we were well informed by the people at ASTAR.

7) Would you have utilized such information had it been available to you?

We certainly did and would encourage anyone who has an autistic member of their family to get as much info as they can get their hands on.

8) Do you have any suggestions for anyone entering a situation with a newly diagnosed son/daughter, or for someone who is of any other relation to a newly-diagnosed child?

First off, don’t be afraid of the autism diagnosis. It does not change the child. Way Jay was still the same sweet boy both before and after we got the official diagnosis. What changed was that now, with this new information, my wife Shea and I, as parents, could start doing things with him that would be much more appropriate to help him learn.

Second, don’t blame yourself for your child’s autism. The fact is, no one has any idea WHAT causes autism, and it happens in families that are rich and poor. Spending a lot of time feeling guilty about your child’s disability is not productive, and it's time that would be better spent learning how to help your child learn.

Finally, autism is not the end of the world. Because of autism, Wayne cannot speak, but he is a very smart boy, and he has a well developed sense of humor. He is a pleasure to have around, and we spend hours playing and laughing. He is my companion on most of my errands, and really I can’t imagine life without him there. There are things about autism that are not pleasant, but having Wayne in our home has been a blessing, and I would not trade it for the world.

Liz here: You can see why I wanted to post this. Bravo to my granddaughter Lizzy for her senior project, and bravo to Wayne for his wonderful attitude. I've seen him parent that little boy, and it does my heart good.

Next week I'm going to give you a recipe for the perfect dessert for your Easter feast: Sour Cream Lemon Pie. Be sure you check back so you don't miss it! I'll do the Healthy Quasi-French Fries later in April.

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3 comments:

Monique said...

Thanks for sharing.

earwaxtasteslikecrayons said...

Liz--

My son, my baby, goes in for an autism evaluation next month. Since we started suspecting autism about six months ago, I've had to go through fear and anxiety to reach acceptance and submission. I had to let go of my expectations and just trust.

Thank you so much for posting this; it's wonderful to see a family coping and functioning so well with autism in their lives and their great attitude about it.

Wendy

Anna Arnett said...

Great post. I couldn't stop reading, and no wonder you are so pleased with your son Wayne.

I have a nephew who is autistic, but was never diagnosed as such. He's the most polite guy I've ever known, and his memory for names, dates, cars, etc., is phenomenal. He'll remind me of when I visited him on (month, date, year), when we drove a (car model, year, color,) and had (name the children we brought along) with us. I asked him if he reminds himself of these things now and then, and he says he doesn't. They're just stored in his brain for instant recall. And for up to 40 years ago!

He's a downright good kid, and his speech seems to improve every year. He couldn't talk at all until he was five, and then very haltingly. He earns a decent living, but has never married. He travels by himself, mapping out exactly what he wants to see in every state, city, or town he goes through, especially enjoying museums. He filled a mission way back when. Some of his companions gave him a bad time, but he persisted.

I wonder what his life would have been like had he been properly diagnosed and helped. He seems to have made his progress pretty well on his own, with encouragement and love from his parents. I applaud him. Just as I applaud you, your son, and grandson. Thanks for sharing.