What on earth could you have been thinking when you wrote what you did in your book? Could you really not have known what kind of response there would be – especially if you have dear, old friends who have a child with autism? Or was it your hope to gain added book sales from the publicity such remarks would generate?
I am not a prude and I do understand your humor. In fact, I even agree to some extent with your opinions on the state of parenting in this country today. I think there are too many parents trying to be friends with their kids and worrying about what their kids think of them. I think there is a lack of respect for and civility to other people that we try to pass off as “being cool.” That’s frankly where I feel you fall, but that’s not the point.
The point is: Was it necessary to make life more difficult for parents who already have been given a formidable task? I don’t think you’re an evil man. I don’t intend to rant and rave the way many have in the posts I’ve read. I’m going to tell you about my life with my son, who is now a 26 year old man with Asperger’s Syndrome (often referred to somewhat loosely as “high functioning autism” to help people understand it).
When my son was born in 1982, there was nothing out of the ordinary to warn us of the difficulties ahead. He learned to speak at the appropriate time. He learned to walk within the normal range of time. He smiled and laughed – in fact, he had an infectious kind of spontaneous laughter. There were things that seemed odd before he was a year old. Like the time we put him on the floor at my mother’s house and he headed straight for the TV, a console model that was on. He was nine months old. We tried to distract him with other things – games, toys, songs – but every time we put him down on the floor, he crawled over to that TV screen. Nine month olds are supposed to be distractable. He was not. It was not “normal.” But since everything else seemed so normal, we let it go.
When my son started pre-school at 3, he was reluctant to play with the other kids. He was quite content to look at books or play with toys by himself. But he did not want to interact with others. In his second year in pre-school, he chose not to talk to anyone except the teacher – and even that reluctantly. I was surprised when the teacher told me about that because he was his usual self at home – talking to family and friends. I mentioned it to the pediatrician. Not uncommon, he said. It’s a phase; it will change. Wrong.
When my son went to elementary school, he learned to read and write, do arithmetic and all the intellectual things that he should. But he had no friends. He had a lot of trouble looking anyone in the eye during a conversation. The pediatrician’s take – he’s just shy. His third grade teacher, God bless her, knew something wasn’t right, though she didn’t know what it was. To my dying day I will remember the comment that she made, “I would swear he was autistic, but whenever I call on him, he knows the answers.” She did have him “CORE” evaluated – tested for learning disabilities. The only thing they could come up with – he needed some occupational therapy because his handwriting was poor, indicating some lack in fine motor skills. They did have him attend a “self-esteem” support group at the middle school, too, but it didn’t do much. The problem is that, because he was different, there were plenty of kids – probably just like you – who would bully and mock him. School was not a pleasant place to go – but he went stoically anyway, because it’s what you’re supposed to do.
In the meantime, I was the one struggling to get him to do his homework. It wasn’t that he couldn’t do it – it was that he refused to start. When he did start, he did not stay focused on the task at hand. It was a constant battle – 3 or 4 hours to do what in reality took maybe half an hour of actual work. We didn’t know there was a reason for this. We didn’t know why he was so stubborn. We treated him like he was an “average” kid.
You can imagine how junior high and high school went. Those places are difficult enough for those “average” kids. For a child who lacks the ability to interact socially, the ability to think in “grey” terms instead of black and white, the ability to move comfortably in his own body, those places were sheer hell. In every new school or situation, he started out doing poorly and ended doing extremely well. He hated change. Imagine going to junior high, with lockers to open and classes to find, if you can’t handle change. Yet by the time he graduated high school, he had a friend and great grades. He was very smart, actually, in an intellectual way. He got a combined 1400+ on his SAT’s. He went to the prom. He was accepted to college.
Mind you, none of this was easy. For every 2 steps forward, there was at least 1 back. From the time he was 4, I was a single mother. I worked full time. I took him and his sister to activities: soccer, scouts, etc.. But while his sister blossomed socially, my son became less inclined to participate in activities. He always seemed to be the odd man out.
Part of the problem, of course, was that he was developmentally lagging behind his peers. The pediatrician’s response – there’s a wide range of normal. Easy for him to say. But as the years went by, I could see the delay. When he was 5, he acted appropriately for a 3 year old. When he was 12, he acted about 9. In high school, he was developmentally about 12-13. Always behind, therefore always different. Always alone. Can you imagine how much pain that causes a mother who loves her child?
My son went away to college, in Philadelphia. As we came to learn, it was too far away from his normal routine here in central Massachusetts. It was too much to cope with all the change on his own. As with every other change, he took a nose dive. His grades were poor – that’s what happens when you don’t have to self-discipline to go to class and do the work. When we saw his grades and spoke with the school officials, it became obvious that there was some problem. That comment his third grade teacher made kept coming back to my mind.
So I went to the obvious place – no, not a doctor, the internet. I searched autism and discovered Asperger’s Syndrome. It was an incredible moment, reading the diagnostic criteria and saying to myself, “That’s my son!” It was a relief to finally know that the problem was in his “hard wiring” and not intentional slacking off. We finally found someone to test him, although we had to go out near Boston to do it because central Massachusetts does not exist to anyone but those who live here. The doctor’s diagnosis was what I had hoped and feared.
Now that we knew what the problem was, we could tailor the approaches we took to teaching my son how to cope with the world to his needs. We could work with the need for routines, the reluctance to interact socially, the frustration of being book smart but street ignorant. He tried to finish college, but after a year and a half, with courage found in therapy (that resulted after “9-11” and my son’s resulting fears), he told us he was unhappy in college and wanted to stop and come home.
But what to do with a 19 year old who does not have a college education? We sent him out to look for jobs. We helped him all we could, but he had to handle the interviews on his own. After all, what man should have his mother going to job interviews with him? He got third shift warehouse jobs, full time. One was a temporary position, so after 3 months it was back to the job search. The next warehouse job was picking orders for a drugstore chain. My son could do it – but not fast enough to make the quotas. Too many distractions.
At that point, I think he became depressed. He resisted searching for a job. We reluctantly decided to see if he would qualify for Social Security disability. At least that way, he could manage a car payment and his college loan payments. He did qualify, gratefully, and for a time he lived on that. That was when God (or whoever you perceive as in charge in this universe) intervened again. The Asperger’s Association of New England sent out a notice that the Massachusetts Rehabilitation Commission had a new program aimed specifically at helping adults with Asperger’s Syndrome find and keep jobs. Just when I was at my wit’s end, trying to get my son to look for work on his own, there was hope.
Hope, however, took hard work. Mass Rehab did indeed have this program. But we live in central Massachusetts, south of Worcester. It took months and months for them to find a qualified provider to assist my son in this endeavor after he was accepted into the program. He still had to drive to Milford, MA to meet with the provider, who traveled an equal distance. That’s no small task for someone who at one time was driving to work in Putnam, CT and ended up on Rte 2 in northern MA after missing an exit.
My son did finally find work, unloading trucks on second shift at a new Kohl’s store. He worked part time. But we knew the economy was slowing before it was big news. Everyone’s hours were getting cut. It’s tough to live on 12 hours of pay a week, even with Social Security (ask any retired person trying to do it). So my son discussed it with us and decided to go back to Mass Rehab to see if they could help him find a full time job. He felt he was ready to try it. Mass Rehab was more than willing to help – if they could find a qualified provider here in central MA (are you sensing a trend yet?). Eventually they did and with the help of a new provider, my son found a full time job at a new Wal-Mart Supercenter, unloading trucks. He drives about half an hour to work, still and manages to keep track of his own schedule (most of the time).
He wants to have a place of his own, instead of living with mom and stepdad. He handles his own finances with our occasional supervision. But it would have to be the right kind of situation. My son doesn’t have the street smarts to deal with life’s details without support. We’ve gone to housing meetings at the Asperger’s Assn. They have solutions – most very expensive. And none in central MA, of course.
My son wants to live on his own – and we believe he needs to. After all, we are going to live forever and we think he needs to learn to be on his own before we aren’t here to support him. Yes, he has a sister – a sister with bi-polar disorder and college loans from an Ivy League college. She’d help if she could, but he might not like it. I have one sister – a 15 year breast cancer survivor. She has her own health issues. My son’s father? He lives on the other coast and, in hind sight, probably also has Asperger’s Syndrome – one reason the marriage didn’t work. Me? I’m disabled by fibromyalgia, and while it won’t kill me, it does make every day life a real pain – literally. The ironic thing? Stress makes fibromyalgia worsen. But having a child with Asperger’s Syndrome is stress, is it Denis?
You know, Denis, I wish you’d put your money and energy where your mouth is. I have admired the efforts you have made with the Worcester Fire Department (I love hockey!). But if you think you have the right to comment on parenting and autism, maybe you should do something to make it easier for us to function – especially here in central MA, the black hole of the wonderful Bay State.
You really made a mistake when you attacked parents of children with autism, however you meant it. You had to know there would be a lot of people who would take you at your written word. You should have known, if you have friends with an autistic child, that parents of autistic children are fighters who will jump at anyone who appears to hurt their child – because autistic children can’t fight back for themselves. If you didn’t, I feel sorry for your ignorance. If you did know all that and wrote it anyway, then you should probably stick your book in a place “where the sun don’t shine.”