Tag Archives: autism

Get educated

World Autism Awareness DayToday is World Autism Awareness Day and this year, as in years past, I’ve decided to take the day as an opportunity to discuss with you the disorder that affects 1 out of 68 American children. The disorder strikes more boys than girls, but only just. It strikes across racial and class lines. It is pernicious and it is growing and we still don’t have any idea what causes it, how it develops, or how to treat it effectively.

When I first started seeing a psychiatrist for meds five years ago, he did a full diagnostic work-up on me and said that, yes, I suffer from Bipolar II, but I manifest a number of traits associated with Autism Spectrum Disorder. Neither of these diagnoses came as a terrible shock, or at least they didn’t in retrospect, because I’d been showing the symptoms of both for my entire life. The bipolar really got hold of me in my teens, but I’d always been an odd child and, in a key developmental track, I’d been significantly behind: speaking. I can speak now (perhaps too much), but sometimes it’s difficult. More crucially, though, I have issues with social cues and behaviors and this has led more than once to me pissing people off when I had no intention of doing so. They assume malice and never stop to consider other causes.

Given that I have the Krazy Straw genes necessary for a couple of disorders, it should probably come as no surprise that my son has suffered. Unlike me, he is firmly on the autism spectrum and suffers the stigma and difficulties associated with that. He’s also, in recent years, become more volatile, which may be a precursor to a full-blown case of bipolar. A double whammy no one would wish on their worst enemy, and I have to stand by and watch it ravage my son every day.

There are some things that work sometimes with some sufferers of autism. There are behavioral therapies that can, if applied early enough and consistently enough, alleviate some of the worst maladaptive ways of the autistic child and adult. Sometimes drugs work, specifically antipsychotics, as these have a tendency to slow the brain down to allow more rational thought. Antipsychotics are most commonly used for people with Bipolar I or Bipolar II, so there’s an added benefit in my son’s case.

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The bitter box

NemoI don’t do a whole lot of what you’d call personal blogging on this site. I stick to reviews and discussions of my work and various bits and pieces of writing- or publishing-related trivia that some people seem to find interesting. Occasionally I’ll talk about my son. Today is one of those days.

You’ll recall my son turned thirteen in October. I know they always talk about how “they grow up so fast,” but I’m here to tell you that’s not an exaggeration. I honestly have no idea how we got from the sweet little boy we had to the raging, hormonal teenager who lives in our house now. It’s not a transition I hoped for or dreamed about and it’s not something I’d wish on anyone.

I mentioned last week that from the ages of about 23-39 I was a wild man on the internet. I picked fights with regularity, was rude and unforgiving even to people who were my friends, and was generally unpleasant in a way that causes me great shame today. You may wonder what’s changed between now and then, and I will tell you now, though I have never discussed it openly before: I have bipolar disorder.

Specifically I have Bipolar II, which is a less extreme manifestation of the illness. Not something to be trifled with, certainly, but I have never been so manic that I’ve seen things and heard voices, nor have I ever been so depressed that I needed radical therapies to get moving again. That said, I’ve been in some dark places and I’ve made a lot of poor decisions when manic. I was an entirely different person before I got treatment, and I hardly recognize the person I was then.

My son, as you well know by now, has autism. We knew from a fairly early age (about six) that his autism was also accompanied by bouts of aggression. This isn’t uncommon among autistic children and adults. It wasn’t until my son was nine that I knew the root cause of my own issues, and even then I had some difficulty putting two and two together. Bipolar had cost me so much during my lifetime, from good friends to family, that I refused to believe that my son, who was already laboring under a significant handicap, might have this problem, too.

It wasn’t too bad at first. Like I said, we knew aggression was an issue, and a dose of a specific medication seemed to curb most of that. As he grew older, he was diagnosed with ADHD — something else that’s very common among autistic children, sad to say — and got a couple more medications to help with that.

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Light it up blue.

World Autism Awareness DayToday is a Tuesday, so as usual you get a couple of reviews. But today is not an ordinary Tuesday, and that’s what I’d like to discuss with you now. Today is World Autism Awareness Day.

If you’ve read Tequila Sunset, you know about the character of Freddie Salas. Freddie is a ten-year-old boy with autism whose mother works as a police detective. Freddie is verbal, but he has impulsivity and temper issues, plus he keeps a fairly regimented pattern of behaviors that, if disrupted, causes him great distress. Those of you who’ve read my blog for any length of time know that Freddie is essentially my son. On the blog we call him Nemo, though that is not his real name.

We first learned that our son was autistic in 2003. He seemed to be developing normally in all respects save one: he was essentially nonverbal. Oh, sure, he could speak a handful of words, but he should have had a vocabulary of a few dozen words by that age. He understood them well enough, which was good, but his speech was a mess. We took him for an evaluation, thinking that he might need speech therapy. We learned far more.

It took a while for the actual diagnosis of autism to come down. He was seven before they would say without reservation that he was autistic. Even then they continued to say that he had Asperger Syndrome, which is a kind of high-functioning autism due to be folded into an overarching diagnosis called Autism Spectrum Disorder. He had been in special education from pre-K onward, receiving various therapies related to his disabilities, which grew in number the older he became. Obsessive behavior was the first after his speech issues, and thankfully he did not develop major problems with his motor skills, though his fine motor abilities were eventually, and continue to be, affected.

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My son does not have superpowers.

TouchThe other day I watched the special preview of the new Fox show, Touch. I have some thoughts on the subject.

Just to be clear at the outset, I enjoyed the episode quite a bit, so if I sound critical of Touch it’s not because I’m slamming it. I do think that Touch is going to have some serious issues maintaining the complex storytelling method it lays out for itself in the first episode, but that’s just the writer in me talking. I’d rather discuss something more fundamental to the show, something that parents of children with autism will probably identify with.

In Touch, Kiefer Sutherland’s character is the single parent of an eleven-year-old boy who has never spoken, who shuns physical contact, obsessively counts kernels of popcorn before eating them and who spends most of his time (when he’s not disassembling cell phones) writing dense rows of numbers in various notebooks. Though the show goes out of its way to say that Jake (David Mazouz) was misdiagnosed as autistic — we never get a clear explanation of just what he’s supposed to suffer from — it’s pretty clear that the child is autistic. Or rather, that he represents the common media portrayal of autistic children.

Pretty much from Rain Man onward we’ve been primed by the entertainment industry to believe that all autistic people have tremendous gifts to offset their social and physical issues. Quite often these are related to numbers, such as when Dustin Hoffman’s character in Rain Man instantly counts the number of fallen toothpicks on a diner floor, or picks up on what cards have been dealt in a game of blackjack. And it is true that some tiny percentage of autistic people, children included, have some amazing abilities. The real truth of the matter is, however, that most autistic people are not gifted any more than the average person is, and their condition is crippling.

Some autistic children are so withdrawn that they don’t walk or even sit up under their own power. Some don’t speak, or use very few words or jargon. Some have social deficits that are impossible for them to overcome, even within their own families. Most will spend their lives as dependents, either of their parents, their extended family, or of the state. There’s no magic wand that’s going to make them all better if we could just understand them. Autism is a handicap. It can be severe or minor, but it is a handicap.

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When states attack

My son has autism. I may have mentioned this before. Our family is very lucky to live in a county that will cover his educational needs, sending him to a private school that specializes in physically and mentally handicapped children. They’ve done wonders for him, and though he will never be “normal” — or neurotypical, as they say — he has made outstanding progress in the years he’s been there. He also received early childhood education and instruction through kindergarten and first grade from a public school for disabled children.

I read yesterday about the costs associated with an autism diagnosis.

According to a 2006 study by health economist Michael Ganz, the direct costs to raise a child with autism to age 22 are more than $500,000 — and that’s in 2003 dollars.

That’s a hell of a lot of money, and we would be unable to come up with any of that on our own. So it’s imperative that we receive assistance, which we do, and I am forever grateful for that. Without the schooling my son has received and without the treatment, he’d be completely unreachable.

Education is only part of it. As I mentioned, my son needs treatment and a lot of it. Unfortunately for us, we don’t live in a state where insurance coverage of autistic children is mandated. From the article linked above, we learn:

In the past three years, the advocacy group Autism Speaks has coordinated a push to get states to pass laws mandating that insurance companies cover autism treatment.

“Our community had gone for far too long at the mercy of insurance companies who used autism as the basis of denial for meaningful, necessary, evidence-based interventions,” says Peter Bell, executive vice president for programs and services at Autism Speaks.

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