An item in the inbox has made me think of Alex’s future worklife: CareerAdvice, “Succeeding at Work With Autism.”

Citing such luminaries as Temple Grandin, the piece discusses how the workworld needs to prepare for an influx of autistic adults as those “1 in every 150″ mature, and what skills the autistic possess to handle a job. “Jobs requiring specific, concrete tasks such as library cataloging, equipment or graphic design, data gathering and mathematical modeling are well-suited to autistics,” reads the piece. “They do less well in positions requiring complex social skills, such as management. And jobs that depend on multi-tasking, such as being a restaurant hostess or receptionist who must simultaneously answer phones and type, are also poorly suited to autistics.”

Image: sxc.hu

Library cataloging? Definitely, as long as you teach Alex not to take the dust jackets off the books first. Equipment or graphic design? Not for him in my opinion, but that’s due more to his inate abilities and talents than due to autism. Data gathering and mathematical modeling? Maybe the first; I’m not sure what the second is, so I guess I’m not suited to it, either.

Surely there will be somebody who just needs something put in order? Or done over and over? Hell, I’ve had more jobs like that than I can remember.

I can’t imagine Alex, who’s almost 11, holding a job (or voting, or driving a car). He has answered phones, though he’s better at hanging them up in the proper cradle. I wonder if he’ll ever make a reservation, let alone take one. I certainly can’t imagine him managing anyone, unless his job was to direct staffers to Elmo DVDs or bags of pretzels.

This isn’t to say he’ll never do them. But like so much of being the parent of an autistic child and like so much of what I have to continuously fight, it is to say I can’t now imagine him doing them.

“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.

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.

February brought on winter doldrums and also a topic that came to dominate 2008, the presidential election, starting with a post on the candidates’ views on autism prior to Super Tuesday on February 5th.

There was more evidence refuting the vaccine-autism link—and specifically the MMR vaccine—from the Archives of Disease in Childhood. We need to get the word out about the evidence that there is no link, as it’s been reported that more parents are choosing not to vaccinate their children, because they fear that vaccines or something in vaccines might cause autism. And measles cases have been on the rise in 2008, with 5 cases reported in San Diego (and soon 11 cases) in mid-February.

In the UK, the National Autistic Society began another phase of its Think Differently about autism campaign, with a focus on autistic adults and the message “I Exist.” The need for this campaign was more than made apparent on hearing comments about autistic children as “retards” made by Adam Jasinski, a contestant on CBS’ Big Brother TV show.

After an article in Wired magazine featuring Amanda Baggs and Michelle Dawson, questions about autism as disease/disability/difference led to discussion (of a rather heated nature, at times).

And then, on February 28th, then-presidential-candidates Senator John McCain linked the rise in autism cases to mercury in vaccines…………………

Soon as December started, my students started asking me what we were getting Charlie for Christmas. I fumbled with an answer—what do you get for the child who doesn’t ask for anything?—and they seemed quite incredulous that he’d no desire for any electronic devices or a football jersey with X player’s last name emblazoned on it. I’ve been used to telling people that things are different with Charlie but, on further reflection, the thought occurred to me:

Charlie, at 11 1/2, is getting closer and closer in age to my college-students. Certainly there’s more than a few similarities between him and the tall guys with really big sneakers or Timberlands with legs too long to fit in the desks and always fishing around in a beyond dog-eared notebook for the homework they forget they had to do. But it’s been a new thing to conceive of, that, before I know it, Charlie will be nearing the age of a college freshmen—a young adult—an adult.

Well of course—-like anybody, Charlie is going to be an adult for most of his life. With his limited expressive language (two and three word sentences) and his struggles with his academics (finally finally he is writing both his first and last names), I guess some would say that Charlie “seems” or “is” a lot younger than his age; that, “mentally” he’s at preschool level or some such. I guess this might seem to be the case to some when they first see Charlie, taller than all of his cousins on Jim’s side (and that includes the cousin in his 5th or so year of college), and when some hear Charlie humming more than saying words, and when they see Jim and me hold Charlie’s hand as we cross an icy parking lot. But time and again I know, never presume too little competence, to little understanding.

Often there seems to be a sense of division—of interests, of needs, of priorities—between parents of young autistic children and autistic adults. Parents of younger children tend, understandably, to focus on early intervention and educational services, and ways to obtain and pay for such services. Talk about “autism rights” might strike some as absurd and beside the point in trying to teach a child to say his own name. But—while my son clearly has a lot of challenges and is most likely always going to need a lot of support to work and live—I find that, more and more, discussions about autistic adults’ needs and autism rights speak to him and his situation.

My son is tall and strong. I don’t believe that restraints or any physical procedures, and certainly not any aversives, are how to help him, at school and elsewhere. He’s in a school district that understands this but that’s not everyone and my son needs always to be treated with respect and in ways that acknowledge his sense of self, his dignity. Too often, this gets forgotten. Charlie has his reasons for organizing his stuff in the living room in a certain way and we don’t see this as odd or aberration, but as Charlie making sense of the world around him, in his own way, in a way that we’ve come to appreciate and then some.

I mean, I like to order the stuff on my desk and in my bag in a certain way; last thing I want to be doing is scrambling for the car key when I’m flying off to meet Charlie’s school bus.

The question that keeps playing in my head, truly, is: When Charlie is the same age as my college freshmen, will he be as tall as the tallest guys and with those seriously big feet?

It’s said to be something that parents of children with developmental disabilities experience. An article by Amy Basking and Heather Fawcett coins the terms “Empty Nest Envy,” as noted in today’s Orangeville Banner:

While most parents can look forward to children spreading their own wings, there are some who look to the future with trepidation and uncertainty. Not just for themselves, but more importantly for their adult children who have developmental disabilities. These parents, when their children graduate from high school, suddenly find themselves supporting their adult child full-time.

The reality for these parents can be daunting. In the article, the authors talk about how for one family their 28-year-old son remains with them. Despite thinking that he would be living on his own with supports at this age, the reality is that he will probably remain with them “until one of us dies or we’re in crisis.” This couple has little time alone and never the opportunity to holiday away together.

Another mom, who is 60 with a 30-year-old son with autism, is quoted as saying, “When the kids graduate there is nothing but endless applications for funding. I can’t afford to retire. I have no savings. I’ll retire when I drop dead.”

The just-this-week published Easter Seals Living with Autism study reports that more than 80 percent of adults with autism between the ages of 19 and 30 are still living at home and I do wonder what wil happen for Charlie. Sure I think a lot about, advocate for, how to provide more housing for disabled adults, more jobs, more and more and more: But how to turn needs, advocacy, testimony, research, into realities? Into an actual place for Charlie to live when he’s older, with the supports that he’ll need?

Let’s say, I don’t want to have develop empty next envy. But it may well be inevitable.

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?

In the midst of talk of diagnosis and disability rights, of treatments and of what’s an appropriate education for an autistic student, we took a hands-free cold walk last weekend to see the Christmas tree at Rockefeller Plaza, and passed a wall of snowflakes too.

• Age of Diagnosis and the Apparent Increase in Autism
  A study in the December Archives of Pediatrics and General Medicine examines autism prevalence trends over time in Denmark and states that “the apparent increase in autism in recent years is in part attributable to a decrease over time in the age at diagnosis.
• Recovery Distracts
  How the notion of “recovery from autism” colors—not for the better— parents’ decisions about “treatments” and “therapies” for autism, and also on the popular perception of what autism is.
• Dangerous Ideas About Autism
  From Icad: “Suggesting that parenting a child with a disability is so challenging or stressful that killing these children is somehow understandable or excusable adds to the probability that other parents will kill their children, because sick minds struggling with the impulse to kill can be assisted to go over the edge by social endorsements, which help them to rationalize murder.”
• Overglut of Gluten-free?
  If everyone’s going gluten-free, is a “special diet” really a treatment for autism?
• Human Clinical Trials Underway for Fragile X Drug
  Experimental drugs that are said to “correct” symptoms of Fragile X, Rett Syndrome, and tuberous sclerosis complex are now in early-stage human trials, the MIT Technology Review reports.
• The Daily Commute (Your Child’s)
  How far does your child—or do you—travel to school?
• Letter to OSU President Gordon Gee
  A letter by Melanie Yergeau, a 2nd-year Ph.D. student in English, in response to remarks by President Gee including the statement that “‘It [autism] should not exist.’”
• Older, and Trying to Be Wiser, and Better at Hemming Pants
  I turn 40 and find myself wearing hand-me-ups from a not-yet-adolescent boy
• The Private-Public Dance: What’s Appropriate?
  What’s an “appropriate” education for an autistic child?
• Who’s On the Board?
  No one with autism when it comes to Autism Speaks.
• Arrested: The Charge? Bad Behavior
  Children with autism and other disabilities, and more of them, are “actually getting arrested for having tantrums at school,” Minnesota’s WCCO reports.

Earlier this week, mega-autism-organization Autism Speaks announced the appointment of three new board members, Artie Kempner, lead director for the NFL and NASCAR on FOX; Billy Mann, President of International A & R - Labels and President of Global Artist Management, EMI Music; and Jack Schneider, managing director of Allen & Co.. Kempner and Mann are both fathers of autistic children.

It’s been noted (by Lisa Jo Rudy at About.com) that the new board members include no one who’s autistic. With the rise of self-advocacy organizations like ASAN, and also GRASP and many others, the absence of an autistic member on Autism Speaks’ board seems more and more puzzling. The Interagency Autism Coordinating Committee lists Stephen Shore, a self-advocate, on its roster, and Paula Durbin-Westby, a member of ASAN, was asked to present at the November 21st IACC meeting (and you can view her presentation here). The Autism Society of America has a panel of people on the spectrum of autism advisors; Shore is also on the ASA’s board as is Valerie Paradiz. And ought not most or all autism organizations have an autistic individual on their boards?

The Interagency Autism Coordinating Committee (IACC) is meeting today from 9am to 4pm, at the National Institutes of Health Neuroscience Center, Conference Room A (6001 Executive Boulevard, Rockville, MD 20892). You can listen in virtually via a webinar:

Use this link:

https://www1.gotomeeting.com/register/446892042

Or, you can attend via conference call at these numbers:

USA/Canada Phone Number: 888-455-2920
International Phone Number: 212-287-1838
Access code: 3857872

The agenda for today’s meeting is to complete the review of the IACC Strategic Plan for ASD Research Strategic Plan. The Strategic Plan addressed six questions:

1) When should I be concerned?
• What are the early warnings signs?
• Are there typical characteristics that are part of an ASD diagnosis?
• How much variation is there in symptoms and severity associated with ASD?

2) How can I understand what is happening?
• What is happening early in development?
• Are there known biological differences that help explain ASD symptoms?
• Are there subgroups of people with ASD that have been identified?

3) What caused this to happen and can this be prevented?
• Is there something in my genetic or family history that poses a risk for ASD?
• How might genetics and/or the environment influence the occurrence of ASD?
• Could an exposure to something in the environment lead to the development of ASD?

4) Which treatments and interventions will help?
• When should treatments or interventions be started?
• What are the medical issues I need to know about?
• How do I know that treatments are both safe and effective?

5) Where can I turn for services?
• What types of services and supports should I seek and where can I find them?
• What is my state or local government doing to provide services for ASD?
• What is the cost of interventions and how will it be paid?

6) What does the future hold?
• What will my family member be like when he/she gets older?
• What is known about adults with ASD and how can I plan for the future?
• How does American society support individuals with ASD?
There’s more about the six questions here.

Review of the plan was on the agenda for the November 21st meeting, which I attended. The committee had to consider each and every revision; many of the revisions were made by Lyn Redwood, Vice President of Safe Minds (= “Sensible Action for Ending Mercury-Induced Disorders”).

Starting here, I live-blogged some of the November 21st meeting. A sense of some of the discussion about revisions to the Strategic Plan is evident here, in an exchange about research regarding a hypothetical vaccine-autism link between Redwood and Dr. Edwin Trevathan, Director of the National Center on Birth Defects and Developmental Disabilities at the CDC.

Dr. Thomas Insel, director of the NIMH, referred to the the detailed rewording of certain sections of the Strategic Plan as “wordsmithing. Many of these revisions were in reference to defining autism as a “biological” and “biomedical” disorder, and to vaccines. Whenever, it seems, these two particular topics were mentioned in the Strategic Plan, Redwood had made revisions and, in many cases, rather extensive ones. Generally the other committee members did not propose such extensive revisions, and generally the other committee members did not speak too much or at much length.

Regardless, midway through the November 21st meeting, the committee was still on the third question and Dr. Insel said that he wanted to complete the revision of the plan, and talked about meeting in December.

I really wanted to hear what the IACC had to say about the full Strategic Plan and was disappointed that they were only able to get not even halfway through the revisions. In particular, I wanted to be present at the discussion about questions 5 and 6, and especially about services and supports for autistic adults. A presentation about services for autistic adults was scheduled in the latter half of the meeting, to be given by Ellen Blackwell, MSW, of the Centers for Medicare and Medicaid Services, and Lee Grossman, President and CEO, Autism Society of America, and I learned a great deal from this, especially about different possibilities for housing for Charlie when he’s an adult.

And one hopes that we can stay focused on addressing the needs of autistic individuals here and today and tomorrow.