Reader Laura (the autismfromtheoutside blog) wrote in response to “Work It Out”: “What do you see in his future? Helping sorting in school cafeteria, hanging clothes as a local store, watering plants at a nursery.” She mentions these are jobs she’s seen students trained for, and they all sound pretty good to me for Alex. (Of course, I just got laid off, and they sound pretty good for me, too.)

I remember watching Alex in the isolette after his premature birth (21 ounces, 27 weeks’ G), watching him grip the breathing tube in his silent, tiny determination to some day pull it from his own throat — which he did, more than once, and sometimes before he was ready. Doing something before you’re ready has always been to me a sign of a good spirit. Alex’s, what should I call them?, internal resources have developed a lot over the past year: concentrating on homework, picking up around the house, remembering the precise location of some fun store he’s visited only once. Says Jill, “There’s not nothing going on in there.”

My problem is not what he can do, but what I’m afraid I can’t do. I watched Alex a few months ago, for instance, as he struggled to finish the tougher levels of an IQ test. He pieced together the puzzle smoothly when the solution called for using four and six pieces, for instance, but I could see his progress wind down like an old clock at the eight- and 12-piece levels. To be honest, I couldn’t have quickly done the 12-piecer, either.) Stalled, he looked away, but still he sat there. Then he looked back at the puzzle, touched a piece, looked away, sat in front of the damned puzzle with a look of defeat that probably felt as good in his throat as that air tube.
But here’s the thing: He realized he’d hit a wall, and didn’t like it. A big part of the workworld is like that, and an equally big part is moving on and up (tell me about it). Obviously he’ll do that puzzle someday. Somehow, as long as it never cuts into how much I believe in him, I think that my current fear buys him the ability to do that. It’s a cheap price to pay.
The NYC agency YAI has a new online autism community, and they let me do one of their first blogs. See it and their new community at http://www.yaiautismcommunity.org/blog/

“We fear for Alex as he grows up and maybe comes to depend too heavily on a system that was built when there was a lot more money around. Is there a reason to suppose that a money shortage is going to abate just because Alex is closer to 21 years old than he used to be?”

I wrote this in my second book. For a long time, I thought I was the only one thinking this way. Then I ran across the recent piece by Linda Davis, who in addition to being the author of Charles Addams: A Cartoonist’s Life, is president of the nonprofit SAGE Crossing Foundation, which was formed to create a farmstead for autistic adults. David and her husband wrote what should become a classic piece to every parent who fears for their growing special-needs child.

“What coming social expenditure will cost more than a third of this year’s budget for the Department of Health and Human Services and be larger than the entire current budget of the Energy Department?” the authors posed. “Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually.”

Image: artnet.com

Read this thing (available on site, among others, at http://www.concordmonitor.com/apps/pbcs.dll/article?AID=/20090407/OPINION/904070328). Among the points: the number of autistic children expected to need extensive adult services by 2023 is roughly equal to the population of Minneapolis; most of these cognitively impaired citizens don’t vote, can’t live alone, or can’t work in public places; and, perhaps most critical, “the wrecking ball swinging at all levels of social services” may alter what we assumed was the standard care in their future.

I grew up thinking that if you’re sick or impaired, someone will take care of you. For years, not being sick or impaired, I assumed it’d be the government (my parents loved FDR). After Alex, I assumed it’d be one of the agencies in the sub-strata of support that seems to have mushroomed below the federal level.

A few years ago, though, I began wondering deeply and often what budget will be left unaxed to help Alex the young adult. I live in a city, and as I passed the doorways and the park benches, not looking at the men living there, I began to wonder more.

“I understand that no one wants to look at a child and imagine the clunky, in-your-face adult he or she will become,” Davis writes, wondering “who will love or at least protect (her 22-year-old son) when he ends up in a group home run by an underpaid, overworked staff.”

Jill tells me, when I mention my fears for Alex’s fate, that she’s the one person on earth - Alex’s mother - to whom I can’t voice this wonder. And I can’t, and then I feel lousy when I do. But somebody should start wondering, and soon.

Often through Alex’s seven years of formal education, I’ve had to learn why he does what he does in school. A few years ago, I was unsettled by the amount of coloring homework he brought home. How was coloring ever going to help him get a job, especially since he could rarely stay within the lines?

Image: sxc.hu

Then we went to a parent-teacher conference and I chatted with his OT. “When Alex does his coloring,” she said, “make him do it standing up, with the paper held against a wall. This strengthens his arm for writing.” I’d never thought of that. Were we correct in how we were teaching him how to write during homework? Well, no. We used markers at home, and his teacher called them “cheating, because they make the stroke evenly for you.” We should also have let Alex use only short pencils, she said, about the length of those you’re issued on miniature-golf courses, because they also prevented him from holding the pencil too far up.

One of Alex’s recent IEPs contained, at my insistence, teaching him to use a fork and teaching him to blow his nose. The fork’s a work in progress, but somebody sure taught him in the last few years how to use a Kleenex, and his number of respiratory infections has since plummeted.

The Alex in school, even special-needs fifth grade, is not the Alex at home. Once upon a time he would only cling to us when we visited his classrooms, and cried when we left. Then he went through a period of eying us askance when he found us there, then studiously ignoring us. Now he comes up and takes our hand but only for a moment, then heads off to his morning’s work the way anyone might if their parents popped into their office unannounced. This I find encouraging.

Jill and I were in a typically over-shopped Manhattan grocery store the other day. The shelves were disordered, and while Jill picked out her cans of chicken broth I straightened one part of a shelf, and a thought stuck me of Alex flawlessly sorting shapes and colors from about age 2.

Too bad he can’t pick the right stocks instead, I said to a friend then.

Maybe he can do that, too, she replied.

The thought came to me of Alex today, arranging toy animals by height and color on our living room rug. “You know,” I said to Jill in the grocery store, as I placed the green beans back where they rightfully belonged, “I have no doubt Alex could stock shelves some day.”

Alex can do much more, we’re coming to think, but we’ll find out what that is only as our education continues.

Learn more about IEPs at http://www.wrightslaw.com/advoc/articles/iep_guidance.html and http://specialed.about.com/od/iep/Individual_Education_Plan.htm. And Google “SEPTA” and find out about local special-education PTAs nationwide.

If you weren’t able to listen in to yesterday’s meeting of the IACC meeting, this is a brief summary:

In the morning, the committee members reviewed the draft of the Strategic Plan and “wordsmithed” various additions and revisions suggested by various members of the IACC. These revisions included:

• the use of “may” or “can” in regard to describing the effects of Early Intervention
• mention of “comorbid” and “co-occurring” (medical) conditions
• a lengthy discussion about vaccines and about what science and evidence there is to refute or support a link (it was decided to include the statement “the weight of the available evidence does not support a link between autism and vaccines”—more details about this are below)

Much more of the draft of the Strategic Plan remains to be reviewed and there was talk about the committee reconvening in December to finish reviewing the revisions.

Paula Durbin-Westby of the Autistic Self-Advocacy Network (ASAN) gave a well-received presentation on the need for ethics in autism research. There’s a need for research on the strengths of autistic individuals, she said, and on the positive aspects of difference, and it’s necessary that autistic individuals be fully represented on the IACC.

In the afternoon, there were detailed presentations on Medicare and Medicaid and on waivers (prompting the Chair of the IACC to note that these systems are as or even more complex that various topics in biochemistry); on the pressing need to focus on adult issues (will the employment rate for autistic persons be better in the future?, Dr. Cathy Pratt asked); on the waivers and other programs in Pennsylvania’s Bureau of Autism Services; and on the Autism Spectrum Disorder Pilot Program in Connecticut.

Pamela Beck spoke about her 24-year-old son Brandon Beck and the self-direction model. The Executive Directors of two agencies providing services and supports for adults in California (Dr. Jeffrey L. Strully of Jay Nolan Community Services) and in Maryland (Ms. Emily Homer of VOCA of Maryland D.C.) described the realities and successes of their programs, and of the intense need for staff: What are traits of staff who are really good at supporting people?

After comments from six members of the public, the meeting was adjourned.

There’s more to note—-will end for now with a quote from Lee Grossman, President and CEO of the Autism Society of America:

“”it’s what we hear the community is asking the most for—lifespan services.”"

Vaccines don’t cause autism and yet a connection between the two seems to have become deeply lodged in the public consciousness. Some believe in a vaccine-autism link with something akin to religious faith, or fervor, to the point that, no matter how often one cites scientific studies refuting, such a link, some are not, will never be, convinced. Some say that parents should have the right to choose to vaccinate or not; meanwhile, measles has been on the rise this year with some 131 cases so far reported, This focus on vaccines has come to preoccupy discussions about autism, over and above the very real concerns of appropriate schools and educational programs, and housing and jobs for adults.

The excessive attention given to a hypothetical vaccine-autism link keeps discussion about autism centered on children, and on young children and infants. It’s the schedule of vaccines a child receives in his or her first 18 months that are especially under scrutiny, and it’s autism in children that most public discussion tends to be about—-but what about older children, and about autistic adults?

This past week I talked to two mothers of older children—-one’s mother son is in his 20s, the other mother’s son is in his 50s. “Your son’s very young,” the mother of the 50-something child said to me and did I feel relieved. So often over the past few years and certainly since Charlie’s grown so tall, the word has been “he’s getting older” and “he’s not so young anymore.”

Charlie, as noted regularly here, is 11 1/2 years old—-certainly no longer a little preschooler who might, or might not, be able to enter kindergarten with same-aged peers. On the other hand, as those other moms pointed out, he’s just at the start of his life and so much still lies ahead.

The years between birth to 5 and 2 to 5 are often referred to as a time that there’s a sort of “window of opportunity” to do as much as one can—intensive ABA, biomedical treatments even like the experimental, and potentially dangerous, chelation. The message delivered to parents is that, if you don’t hurry hurry hurry and do everything, do all, you can now, you’ll lose that precious window and it’ll all be nevers: A child will never be able to lead a normal life, go to school without special ed, go to the prom, go to college, get married. Take care of themselves. The result is that parents—-as we did when Charlie was younger—-throw themselves headfirst into every possible therapy they can try, and many dollars are spent in the process, and many hopes rise and fall.

An article in The Gazette about 4-year-old Peyton Thorpe. His father is Noel Thorpe, the special-teams coordinator and defensive-backs coach for the Edmonton Eskimos; Peyton was diagnosed at 2 years old with autism and currently does in-home therapy five days a week and attends an integrated preschool four days a week. He is not talking yet.

I remember and still feel what it was like that have that “sense of urgency” to do everything we could before Charlie turned 5, as if kindergarten were some sort of magic goal—a finish line to normality. But far from 5 being some magical age that “everything” must be accomplished by, Charlie’s has kept on learning at 6, 7, 8, and onward. What hasn’t kept apace with his getting older is people—-school administrators, autism consultants of various sorts, his own parents—-knowing what to do, as far as programs, teaching methods, training for staff, transitioning Charlie from each stage. Though parents of just-diagnosed children often feel so confused and uncertain, Early Intervention and preschool services and programs are (here in New Jersey, at least) in place. After that, it always seems to be “the great now what” all over again.

But the fact that we have a sense of how to help young autistic children and are slowly finding our way to teach older children, suggests that we maybe kind of have a better sense of what to do. (Maybe….) The mother in her 80s said to me that, compared to what was available for her son when he was Charlie’s age and younger—-nothing—–everything we’ve gotten has been served up on a silver platter. “And I’m glad it has,” she added. Now the work, or the work I know I have to do, is to figure out how the things Charlie’ll need—a job, a place to live, a way to be among the community—can be put in place and can work.

Returning to Noel Thorpe in The Gazette:

Thorpe doesn’t know what the future holds, but understands there will be challenges and obstacles ahead; hurdles he seems willing to tackle head-on.

“I can’t imagine [Peyton] not speaking. That’s a goal,” he said. “But let’s be honest. If he doesn’t, I won’t love him any less. It’s about the connection between two people. There doesn’t have to be words.”

The mother of the 50-something year old young man told me that her son was 10 when he started to talk. Over time, much can happen, and I want (I need) to savor every moment of our time with Charlie. Yes, childhood’s not forever—that’s why there’s no need to rush it, or to speculate endlessly about theories of what might cause autism.