Steps Forward and Back

Steps Forward and Back

My younger son with autism, who is thirty-six, has been moved to a new house. He wanted to go. In the house he was in before, the rooms were so small that his things were spread out over two rooms. He also had to pay rent for two rooms. He likes to have several things going on at once, like TV, something happening on his computer, and jumping on his trampoline. The old arrangement made that impossible. There was also only one bathroom in the old house, which created some conflicts with his roommate. The true problem for him, was that there was no basement. That put the furnace, and the noise from the loud blower, where the sound could assault his senses. The agency overseeing the house had promised to get the blower fixed, but that turned out to be impossible. Sounds from heating systems and air conditioning systems have always been painful to him. We've provided him with a white noise generator and whatever else we could, to ameliorate the situation, but there's never been a truly satisfactory solution, except for having a system where he couldn't hear it. In the new house, the furnace is in the basement, and our son has a room big enough to accommodate all his things, with an en suite bathroom of his own. The house is also well built and in a very good neighborhood not far from where my husband and I live.

My husband and I take him out every Saturday for lunch at a place of his choice. For the past few months, that has been Wendy's. A couple of weeks ago, two things happened that were very encouraging. Normally for him, a door or a window must be fully open or fully closed. Anything else in unacceptable. He will try to close partially open doors anywhere he is, even doors he has no right to be near. On that day, my husband left the storm door of my son's new house ajar about six inches. Our son didn't run back to close it. That was a first. Then, the ice dispenser in the computerized drink machine at Wendy's wasn't working. In the past, that would have caused a meltdown. That day, it didn't. There was some grumbling, but our son drank his soda without ice. My husband and I thought he was making real progress.

That conclusion lasted about two days. Then the incident reports started coming in: barging into a bathroom occupied by a roommate, public masturbation, entering a roommate's room without permission to take cans of soda, and finally, biting another client at his vocational site. Biting has been a problem with him most of his life, but we hadn't had an incident in a long time. His initial excitement and joy at having new quarters had worn off, with disputes over thermostat settings, soda supplies running out, and several cable outages bringing down the internet, that is his real connection to the world. It had been a couple of steps forward and then a giant leap back.

I believe that there has always been progress over the years, but it has never been steady, and I've rarely known a week to go by without some sort of a challenge. That is still a lot better than his younger days, when a problem free day or even an hour, might have been cause for celebration. Most days I continue to have optimism, but decades of experience have counteracted any hopes for magical cures or great leaps forward. I'll take the little victories as they come and deal with the inevitable setbacks. That's life in his neighborhood of planet autism.

See my philosophy and my autism related books.

Autism Awareness Month

I remember, pre-Rainman, when autism awareness meant getting people to know the difference between artistic and autistic. That was even more problematical when both descriptions fit a particular individual, as was the case with both my sons. We, of the Autism Society, tirelessly went to talk to both college students and their professors, schooled aides that shouting at our kids was not the best choice, and dug our fingernails into our palms while getting the more intransigent principals to agree to the goals we needed in an IEP.

Granted, there are parents to whom IEP meetings are still accompanied by the rending of garments and the gnashing of teeth, but at least autism very rarely engenders a blank look anymore.

Sometimes I worry about the glamorization of autism. Teenyboppers fall for Spencer Reid on Criminal Minds and autism has become inextricably tied with savant skills. That is all well and good for individuals with autism doing nicely by exploiting their savant skills. I think I might even put one of my sons in that category, in a limited way. He doesn't look anything like a TV star and he wouldn't want to. He doesn't like drawing attention to himself. But how about all the individuals with autism who have no savant skills, or how about those for whom they make no difference because of the severity of their other disabilities? They make an occasional appearance on TV or the movies, but you don't see them much. That is a lesson from Rainman ignored. Yes Raymond could count cards beautifully but much of the rest of the world escaped him, even if he did decide that K-Mart sucked. When I saw the end of the movie, I imagined what would come next. Raymond would find that without an outside antenna, his portable TV wouldn't receive Judge Wapner in the Faraday cage of the train and he'd have a meltdown.

Some persons with autism live quite well on their own, needing no more services than the average human being. Some even live better. But many do not. Buildings can be bathed in blue light and stars play poker into the night, but most people are still woefully ignorant. They are well aware that autism exists these days, unless they live in a cave. But the everyday details of teaching someone to keep their voice down in a restaurant, or scraping feces off the wall, or kicking the ass of a money grubbing school district, those they don't know. Hollywood won't teach them, neither will t-shirts, bracelets, boots, or hats. It is up to those of us who deal with those details to tell the truth though tweets, posts, songs, and stories --- whatever we can do. Then there will truly be autism awareness.

You can see me and the autism books I've written at autismnovelist.com

When They Grow Up

When They Grow Up

When most people think about autism, they think about children. For parents, it’s all about the right school, the right program, the right therapy. Then there’s diet and possibly pharmaceuticals. And if you do all that right, you think things will turn out okay. You don’t see that much about adults with autism, and when you do, they are often portrayed like Spencer Reid on Criminal Minds, odd but brilliant and totally functional. Would that things always turned out that way.

The truth is, that barring co-morbidities, persons with autism live a normal lifespan. That means that they will be children for the first eighteen years of it and adults for the next sixty or so. They may get to be in school into their twenties, but after that, it’s a whole new ball game. Many of the high functioning can make it through college and/or get decent jobs. Companies like Microsoft are reaching out to employ the more talented among them. That’s great!

But how about the ones who aren’t high functioning, the ones who smear their feces on walls, who head bang, who would spend their days with their hands down their pants? Do you see them on TV or in the movies? Rarely if ever. They may have savant skills like their luckier brethren, or they may not. In either case, their behaviors, despite whatever interventions have been tried, prevent them from capitalizing on them. Autism is a spectrum. Those are the two ends. There are all the ones in the middle too, each with unique sets of needs. So what is the best care for all those adults?

There are as many answers as there are individuals, and almost none of them are easy. There are the lucky ones on the high functioning end who grow up to pursue careers, launch, and fend for themselves with minimal or no supports. Then there are the ones who get some kind of a job and with periodic interventions from parents, family, and or services, make out reasonably well. But then there are all the others, who may or may not be able to hold a job, but require twenty-four seven supervision.

There are group homes, in home supports, and work programs. Some are readily available, some have huge waiting lists. All require careful consideration, and many, a great deal of planning. Choosing the right options to fit the life of a son or daughter may be a lifelong task, both frustrating and draining, but best faced with clear eyes rather than rose-colored glasses. While even with a child of normal needs, one may never cease to be a parent, with an adult with autism, one may never cease to be a guardian. It may be a job from which you can never retire, but the most important one you’ll ever hold.

It is really easy to get angry watching confirmation hearings. It is the nature of politicians to lie. When that lie is contrary to your concept of what's right, or affects you personally, it's infuriating. For me that has applied in such matters as global climate change denial  and civil rights issues. But nothing upset me more than seeing a candidate for Secretary of Education who hadn't the vaguest idea what IDEA (Individuals with Disabilities Education Act) is, or even that it is Federal law.

Those of us who have spent large chunks of our lives fighting for the rights of our kids and other people's kids, to receive a free and appropriate education, have depended on that law, its predecessor, the Education of the Handicapped act, and the state laws that support it. When I advocated, I memorized the law chapter and verse. Even then, I often sweated bullets to get a district or even an individual principal to follow it. But through all that, at least I knew that the Federal government was on my side.

If I was a parent or advocate attending an IEP meeting today, I'd be very nervous. What rights will be pulled away, or at the very least go unenforced? What will happen to the kids who lose them? Instead of a productive life, will they end up wasting away in front of a TV set --- or worse? For those of us with children with disabilities, their futures haunt our dreams. Very soon those dreams could morph into nightmares.

There is nothing more damaging in this world than willful ignorance. Even if you disagree with those in power, they should at least be able to conduct an informed and intelligent discussion.