Seems likes CNN is running a three-day series under the name of “Autism 911,” in which they’re focusing on a California family, the Bilsons, whose middle child, 13-year-old Marissa, is autistic and has tantrums that are “off the charts and seemingly unwarranted.” In “Supernanny” fashion, an autism consultant from an ABA provider, Autism Partnership, has been called in and, it seems, the CNN show will see if it’s possible to “[rein] in” Marissa’s behavior.

Since she’s 13, I’m wondering if she’s entering, or isin the midst of, puberty? As noted, adolescence and the hormonal and other changes has made this school year—already challenging as Charlie started middle school—-even more, well, challenging.

And then there’s this quasi-sensationalistic statement on the CNN piece:

….many of us have never seen autism in action……

The statement’s said following Mary Bilton’s uncertainty about what to do, but it seems rather presumptive, as if most people have never seen anyone with autism (with the 1 in 150 prevalence rate for children, most people probably have met someone with autism, whether they know it or not) and as if “autism in action” is equal to tantrums (talk about a limited view of autism). A state from the co-director of Autism Partnership, Dr. Ron Leaf, says something more hopeful and, I’d say, accurate:

The one thing that Leaf believes they all have in common is that “[autistic persons] are not expected to do enough.” Leaf insists we have set the bar too low for what we think children and adults with autism can do.

You can say that again—-presume competence and it’s onward and upward; assume “he can’t do that”—-we can’t do that, for Marissa Bilton, for any child.

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.