“I can’t believe,” said Jill last night, ”that in a month the kids will go off to school in the morning, and then-”

Yes? Raunchy day-long fun like we used to have?

“-I won’t have the house to myself,” she said.

At 11:44 a.m. last Wednesday, my phone rang and my boss asked me to a conference room. In there I found him in front of a yellow legal pad scribbled with numbers, and next to him a woman I did not know.

“Jeff,” he said, ”do you know ——? From HR?” The next 20 minutes constituted a scene staged across the country, in near-record numbers, every working day. Last day at my job, and my last day still working to receive insurance benefits, is 5/22. Benefits and several and such will continue for a while. Then unemployment and COBRA — with its attendant lessened pinch from the Stimulus plan — will continue.

Alex’s autism will continue longer. I actually dread being home for months alone with Jill during the day (ha ha — sort of) more than I dread the extra time I might have to spend caring for Alex. In fact, a few extra hours during the week with the boys would be welcome before they become teenagers and hate me.

“You’re very calm about this,” my former (also recently laid off) boss said to me on the phone this morning, “and that worries me.”

Me too. I’m usually jubilant when I leave a job. Now I just have this low humming dread. Alex has no immediate medical needs; we’re even trying to get him off Topomax. Years of freelance writing and marketing books have also conditioned me to stuff envelopes against the enormous odds, but the odds these days of getting a full-time job seem beyond enormous.

Why not jubilant? The last time I hit the employment silk, in January of 1998, there was no Alex. Now there is. This crisis has at last trickled down to me, a low-paid publishing professional, and I have no doubt it’ll continue through 2009 to trickle down to the agencies that provide Alex’s services. Not to mention that it’s good to have insurance and a steady income when your child is autistic. It just quiets the hum.

A Google search for “parents,” “laid off” and “autism” turned up little, but you can check into autism meet-up groups for your city at http://autism.meetup.com/cities/us/. I bet you won’t be in a group long before you run into another member who’s been canned.

Image: bestrecessionever.com

Discussion was dominated by two stories, that of 13-year-old Adam Race, against whose parents a priest filed a restraining order, and of 5-year-old Alex Barton, who was voted out of his kindergarden class by his classmates, at the suggestion of his teacher, Wendy Portillo. These two incidents sparked some very heated and often acrimonious exchanges and remind me of why there’s a need to think about autistic persons and the community, in faith communities and all others.

Also: It was reported that there had been 72 cases of measles so far in the US, the highest number since 2001—-and the number would only go up, while misinformation about vaccines continued.

Sometimes it seems that everything, if not anything, could be said to cause autism (and that everything, and anything, has been offered as a “potential treatment for autism”). New tests to detect signs of autism in younger and younger children and, indeed, in babies were reported.

A New Yorker article on neurodiversity provided a simple answer to the question of where are the autistic adults?

And in May of the year when I started learning more and more about employment and housing for autistic adults, Charlie celebrated his 11th birthday–and am I always glad to be Charlie’s mother.

On today’s Good Morning America, a story of giving and compassion—-something we could use more of, and not just at this time of year: When layoffs were announced at the Governor’s School of the Arts and Humanities in Greenville, S.C., Ralph Hanahan—a state employee for 20 years—voluntarily asked to “take the hit,” so his fellow worker, Mike Camp, could keep his job. Camp has four children aged 6 to 10, the youngest of whom has “severe autism”:

The Camps already have dealt with the great stress brought on by the treatment and therapy for Aaron’s condition and, at times, their medicals bill are too much to bear.

“Ralph [Hanahan] definitely had a soft spot in his heart for Aaron,” Lorrie Camp said.

Her husband said, “He honored that by putting himself in my place and taking the layoff that should’ve been mine.”

Hanrahan, who is currently looking for a job, collects $326 in unemployment. Camp’s mother, Martha Pool, wrote to GMA to tell them about Hanrahan as the family’s “‘Christmas angel.’”

Over the years, it’s happened more than once, and most unexpectedly, that someone has helped us through a tough spot, has been there to help Charlie when we were feeling pretty alone, and (yes, call me a sentimental optimist) I still think there are more Ralph Hanahans out there than we might think.

h/t to Bonnie

Yesterday I wrote about 16-year-old Collin Driscoll’s Hire the Brain business—–in Maryland, 22-year-old Andrew Pegg of Frostburg owns Andilla Designs & Graphics, which personalizes gifts and adversing products. As noted in today’s Cumberland Times-News, Pegg, who is autistic, “has not spoken a single word since he was 2 years old.” He was recently awarded the Personal Achievement Award from the Maryland Division of Rehabilitation Services and the Maryland Rehabilitation Association. Pegg receives assistance from his family, counselor, and Derrick Swandol, a job coach from Spectrum, a local non-profit agency.

I know it’s a long road ahead to figuring out a job for Charlie and supporting him in it. Hearing about Hire the Brain and Andilla Designs & Graphics reminds me that, there’s more possibilities out there than might be thought.

Today Easter Seals is unveiling the results of its Living with Autism Study. The study was done in cooperation with the Autism Society of America. 1,652 parents of children who have autism and 917 parents of typically developing children were surveyed about daily life, relationships, independence, education, housing, employment, finances and healthcare. The results are summarized on the Easter Seals blog:

The Easter Seals Living with Autism Study results reveal parents raising children with autism are very concerned about the future independence of their children. In fact, they’re far more concerned than parents of typically developing children — nearly 80 percent say they’re extremely or very concerned about their children’s independence as an adult, compared to only 32 percent of other parents. This is especially true when it comes to their financial independence, quality of life, social and inter-personal cconnections, and employment and housing opportunities — and with good reason.

Autism is a growing public health crisis, and families are desperate for solutions and resources. Easter Seals and others in the autism community are doing their best, but current systems, structures and resources to help people with autism and their families do not adequately meet the growing need, especially for adults with autism.

Today’s Chicago Tribune provides more details:

The study by Easter Seals found that more than 80 percent of adults with autism between the ages of 19 and 30 are still living at home. Only one-fifth of children 16 and over with autism are employed, compared to 75 percent of people that age without developmental disabilities.

And children with autism under the age of 18 are far less likely than typical children to take advantage of some of the basic tools of modern society, like cell phones, bank accounts and credit cards.

We’ve got to start thinking and doing right now to address these more than pressing concerns: There has to be housing and trained staff and jobs, if autistic adults who need such services are going to have access to them. And we have not only to teach autistic children about using cell phones and ATM cards and managing their bank balance, we have to think that they can and will learn these things.

I really think that a first step is, indeed, believing and knowing that autistic children can learn all those things and that if they’re not, we need to trying different ways of teaching, and learning how they can best learn. Too often I’ve seen my son not learning something (after weeks, months, and years) and every time it’s been because the same old teaching methods were being used, and Charlie was making the mistakes and minimal progress.

Yes, we’ve got a lot of work to do, and what if we start by thinking, it’s not just that a child is not “getting something,” but we’re not “getting” how we can change ourselves and teach them in ways that best suit their ways of learning?

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.”"

As I note regularly here, finding the right school and teachers for Charlie, and making sure the education he’s receiving is appropriate, challenging, tailored to his needs, are our constant concern. ABC News visits the Community School in Decatur, Georgia; the school was the subject of a recent article in the New York Times magazine. The school doesn’t seem quite suited to what Charlie might need, but the focus on educating older—adolescent, teenaged—autistic students really interests me. Sometimes it seems the last time that most of us felt sort of confident that we had an idea about the right sort of educational setting and programming for Charlie was when he was preschool age—–elementary and now middle school remain territory for which there’s only a very rough map.

Learning about a career event in New Jersey that was attended by autistic students and other disabled students turns my mind to even more concerns. The event was held at Novartis Pharmaceuticals Corp. in East Hanover in honor of national Disability Mentoring Day. There were 17 other national sponsors present and 50 New Jersey companies at the event, which was overseen by the American Association of People with Disabilities (AAPD) and, within New Jersey, by Allies, Inc., which advocates for people with disabilities and their families.

Yeah, more to think about—-more new terrain to step into, after I take a really deep breath.

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.

Yesterday’s Wisconsin State Journal reports on changes in how the budget for severely developmentally disabled adults in Dane County is allocated, and how these affect individuals and the services they receive:

…….as more clients enter the system, the dollars are being spread thinner, with $76.5 million spent in 2007, the last year for which complete spending is available. On average, each adult client was allotted $49,196 in 2007 for housing, care, job assistance and other needs. Adjusted for inflation, the amount is down nearly $7,000 from seven years earlier.

Less purchasing power means less staff care for each person and even, as parents such as Kathy Karklus, of Madison, fear, a greater risk of injury for the vulnerable population.

Karklus’ son Ryan, 28, suffers from severe seizures and must be sedated and confined to a wheelchair. With the county’s proposed 3 percent average cut for existing clients next year, Ryan could receive fewer dollars, which means Madison Area Rehabilitation Centers receives less money for keeping him as a client.

That cuts into the rehab center’s budget and over time has meant fewer staff members, frozen salaries and reduced hours of care for clients.

It’s noted that Dane County was an “innovator in creating a community-based approach” in the 1970s and 1980s, when developmentally disabled individuals were moved out of institutions. This approach emphasized people living in group homes rather than in institutions and working with a caregiver alone, rather than in teams. However, this very approach has proved to be more expensive and “the county has promoted ‘efficiencies’ to save money, resulting in more situations where four or five people may live together in a duplex.” As the Wisconsin State Journal notes, it is financial needs and an emphasis on tight budgets that are now driving the program, rather than “a philosophical approach, emphasizing individual choice and human dignity.”

I think I know which approach I would prefer for my son: How to make it a practical reality?

Regardless of whether or not BitTorrent founder Bram Cohen has Asperger’s Syndrome as reported in the October 16th Business Week, this post about Cohen in Valleywag—according to which Asperger’s is “a sort of autism lite thought to be common among geeks” and a “mental condition”—might lead you to at least raise an eyebrow or sigh in annoyance. Or exasperation.