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.

What?

What?

The woman who sits next to me in choir was telling a story tonight. She went down to the mail room and asked an employee there a question. The question was not directly related to his job. She mocked the fact that she didn't understand her question. She was even more disdainful of the fact that when she explained it, he didn't know the answer.

I inquired if it was possible that he might have been have been unable to give her the answer she required because he had been placed in the job by the local developmental disabilities agency. It was the sort of job that would be a good placement for an intellectually challenged person. She responded that this was possible, but if he was, he should wear a badge or something so she'd know she was working with someone of limited capability. (My more polite words, not hers.)

What? Someone is supposed to wear a badge to indicate their IQ score? I told her there are groups of people who might think that those with so called normal intelligence should do so. She took that as a joke. I was not really joking.

My mother and my older sister were in the high IQ society, Mensa. I took the test at fourteen, because it would have matter of total humiliation if I couldn't make the grade. I passed. As a result, I grew up in Young Mensa. To be considered in the intellectually disabled range generally requires an IQ score about thirty points below average. Most of my friends and I, depending on the test used, had a gap bigger than that between us and the so-called normal population, most likely including the lady sitting next to me in choir. I don't ever recall anyone proposing making the "normals" wear badges because they would be slow to work with, but there was plenty of frustration expressed about having to deal with people who couldn't keep up.

People are who they are. We all have different gifts and different levels of functioning. We don't label people as Alphas or Deltas as Aldus Huxley had his society do in Brave New World. We are all entitled to basic human rights and basic human dignity. No one is proposing that someone at any level be put in a job they are not capable of doing. But whatever the job is, if it is done competently, there is no reason for derision, if they don't have knowledge in other areas.

Sometimes “normal” folks don't have knowledge that would make them better at what they're doing. A quick example, the lady in my story doesn't read music. When the musical director mentions half notes, or rests, or musical terms, I explain them to her. Does she have any plans to learn to read music? Nope. Maybe I should hang a badge on her.

Interview with Sally Ramsey

Why did you write Galapagos Finches?

Since my sons were diagnosed with autism, it has had a profound effect on my life and my writing. I have given much thought to the possible future of a world with an ever-rising incidence of autism. Galapagos Finches explores one possible future.

Do you remember the first story you ever wrote?

I barely remember a short story I wrote at age eleven when I inherited my grandmother's typewriter. I remember a novella I wrote at age twelve, featuring my favorite hero and a heroine who was an idealized version of me. These days a story like that might be referred to as a Mary Jane. Not long after, I auditioned to join actual creative writing classes and was required to churn out a story a week. Not long after that, I started doing the same just to please myself. It is difficult to remember when I didn't love spinning stories and use the written word as a refuge.

What is your writing process?

I start with an idea and usually an ending. The first line starts me on my way and I write until I get where I think I should being going, generally to a certain word count per day. Once I finish, I usually do at least three rounds of edit/rewrites until I'm reasonably happy with what I read. Usually important points in the story are clarified during the rewrites as well as correction of continuity problems. I also attack a raft of problems with construction and just plain grammar.

Do you remember the first story you ever read, and the impact it had on you?

The first story I remember reading by myself was The Cat in the Hat. I was very proud of myself and memorized the whole thing. I couldn't wait to read more books by myself.

How do you approach cover design?

I have very little artistic talent, but I want the cover to reflect the story. I search for art that will do that. I recently found a professional to turn the art into a viable cover design.

What are your five favorite books, and why?

I honestly can't limit it to five. I like series and genres. I will immerse myself in one for a while and then move on to another. At various times in my life I've devoured science fiction, romance, mysteries, and paranormal adventures.

What do you read for pleasure?

I like books with happy endings, or books where I can't figure out what the ending will be. I love to be reassured, but I also love to be surprised. I also love biographies of interesting people, which can be almost anyone.

What is your e-reading device of choice?

I use an iPhone.

What book marketing techniques have been most effective for you?

I've found that if people develop a personal interest in me through something I've put online for free, they'll be more willing to shell out for my books. I post a chapter to a free story every day --- weekends, birthdays, and holidays included.

Describe your desk

I have a computer table next to my bed with a laptop and a monitor on it. I sit on the edge of the bed to type. I keep a stack of notebooks on my bedside table.

Where did you grow up, and how did this influence your writing?

I grew up in Newark, NJ and then in New York City. There were considerable safety issues, for several reasons. Writing was one way to find a place of security. The need to fight back is reflected in my characters, especially the female ones.

What motivated you to become an indie author?

I do have some books from a publisher, but I like the control, the speed, and especially the higher royalties.

How has Smashwords contributed to your success?

I just started on Smashwords, so I'll have to find out.

What is the greatest joy of writing for you?

I love the act of creation, whether it is in the laboratory, the kitchen, or on the page. I especially like to hear from readers whose lives I've made better, if only for a few moments. I've been told I've brought readers through hospital vigils and tough times at work. There's not much better than that.

What do your fans mean to you?

I love fans. Some of them have become friends. I learn about their families and their lives. I bask in the support and love I feel flowing back.

What are you working on next?

I'll be writing a semi-autobiographical novel. Autism will be a continuing theme.

Who are your favorite authors?

Robert Heinlein, Nora Roberts, Lynsay Sands, Earle Stanley Gardner, Edgar Rice Burroughs, Margaret Truman, Isaac Asimov, L. Frank Baum

What inspires you to get out of bed each day?

I start editing what I wrote the day before, almost immediately (about 6:00 A.M.) and post to the web. That gets me going.

Published 2016-11-18.

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Books by This Author

Galapagos Finches by Sally Ramsey

Price: $0.99 USD. Words: 18,380. Language: English. Published: November 17, 2016. Categories: Fiction » Science fiction » Utopias & dystopias

Galapagos Finches is a science fiction novella which paints a portrait of a future in which the increase in technology spawns an increase in the prevalence of a subset of the autism spectrum (Aspies), given to extraordinary skills. As those with such skills occupy increasingly higher rungs in the society of the United States, a backlash takes place.

Food

“I don't want that cookie. It has raisins in it.”

“But you love raisins.”

“I like to eat them by themselves, not in anything.”

OR

“That has chunks in it. I can't eat it.”

“Those are tomatoes. You love tomato sauce.”

“Not with chunks in it.”

When the people of Planet NT think about problems with food, they may think about allergies or perhaps gluten sensitivities, or even vegetarianism. Lord knows we may have to cope with all of those, with loved ones on the autism spectrum. And we may throw in casein (milk protein) with the gluten as a no no. I have a cookbook to help with GFCF if you need it. Actually I have two. One, originally distributed by the Autism Research Institute, is out of print, but copies come up occasionally on Amazon. The other is free or cheap on Kindle and is also available as a cheap little paperback. But I wanted to talk about the quirkier stuff. A lot of that has to do with texture.

There are many things that may be unacceptable, or just evoke extreme anxiety. I remember watching my older son going over a fish filet for an hour, with a pair of tweezers, before creating a fish taco. He was making sure there weren't actually any bones in it. Nuts and seeds may be unacceptable. Lumps, chunks, or even bits of herb may refused. A hamburger patty and a bun may be eaten separately but refused when together. Vegetables may be anathema.

You can try insisting that what is put before your loved one must be eaten, which is very unlikely to be successful, or you can adapt. Honestly, would you eat something that made you uncomfortable? Would you want to be forced?

Adaptations are not that tough, once you understand what preferences are. There are many smooth sauces out there. If you can't find one, things can be pureed. It you leave nuts out of a cookie or cake, you may find that mini chocolate chips or butterscotch pieces are not only acceptable, but make a better cookie. If you are caretaker to someone who wants to cook for themselves, you might want to let them do so, just hang close enough for safety. You may find the amount of food they shovel into their mouths when they've cooked their own meal, astonishing. In addition, you will be teaching living skills in a non-threatening way.

The most important thing about food is reading labels. That's not always the easiest thing to do, especially if you're like me and left forty in the rear view mirror a long time ago. A magnifying app on your phone can be helpful. So can a plain old magnifying glass. 

In our family, the biggest hazard has always been MSG, which makes my younger son violent. I have met food buying caretakers who did not know that it stands for monosodium glutamate. Bad things ensued, especially from chili beans. 

Due to a quirk in the law, non-dairy does not mean casein free. If you're worried about casein, you do have to check the fine print. Forget the word natural. It doesn't mean something is good for you. The cyanide in peach pits is perfectly natural. That doesn't make eating it a good idea. The USDA organic label refers to the avoidance of artificial fertilizers and pesticides. That doesn't necessarily make the food good for you either. You still have to check on what is in it. 

Eternal vigilance can be the price of a quiet dinner and healthy son or daughter. As I've said before, the buck stops here.