The Interactive Autism Network (IAN) Project has released its Parental Depression History Questionnaire, in which parents share “their experiences of the challenges involved with raising a child on the autism spectrum.”

Part one of the report explores “stress associated with child-focused issues, such as challenging behaviors and erratic sleep habits.” Part 2 will address additional issues, such as the impact on finances or marital relationships.

I haven’t read the report — I’d like to, in the same way traumatized Vietnam vets wanted to see Platoon — but I have a feeling it reads like a template for a lot of lives.

“For many families,” the report opens, ”the experience of raising a child with an ASD begins with a feeling that something is not quite right. Perhaps during infancy, the child seems to be behind in development …” (”Jeff… he doesn’t look at me.”) “Eventually, as the feeling grows stronger, the family may seek a diagnosis to explain the child’s emerging, more pronounced autistic behavior.” Oh yeah, the doctor with the dolls, who didn’t take insurance.

“Whether the diagnosis comes earlier … or later … chances are the family is already under considerable stress. No aspect of family functioning is unaffected.”

Sounds spot-on so far. Autism jerks every aspect of our life like fish jerking a line.

The report (findings are still listed as preliminary) cover child behaviors such as meltdown and aggression; parent self-esteem and feelings of competency (I take the silent, seething, knitted-brow approach to such moments, and one teacher surveyed said her parenting experience “has completely blown my confidence” as a professional); improvement of behavior over time; “other people and their lack of understanding” (how long is this report?); sleep disruption and its exacerbation of stress (“well over 50% of the problem, I think,” said one mother, and “it’s literally killing my family” said another parent); and treatment issues.

“I am so tired,” concluded one parent, “of fighting.”

The report is well worth reading.

Image: IAN

I know that when Aunt Julie (aka my sister) reads this, she’s going to say, “You want to WHAT? You want to inject your son with PARASITES?” Very important to read the all-cap words with just the right amount of amazement.

One day, I’m sure, they’ll have some more answers to autism’s causes and effective treatments. Right now, thought, it’s like we’re all bumping into each other in the same dark room, looking for the door to get out. Every now and then someone says, “Try the gluten-free, casein-free diet!” And you think, “Nah, that just doesn’t seem right to me.” And you’ve read from people who seem reliable and sensible to you that it’s not effective.

Then you bump into someone who says, “Helminthic therapy worked wonders for my son!” And you think, hmmm, didn’t I read something somewhere about worms being used to treat autoimmune diseases like MS and lupus? And then this turns up in your inbox (see the description for May 14), so you do a little digging and watch this video, which definitely reminds you of all the times your son has had a fever, and he acted (how to put this nicely?), well, less autistic.

Why does this unproven, unapproved, and untested therapy seem so appealing to me? (We’re not going to do it, because my favorite way to research something — quickly glance at a few web sites before moving onto items I bookmarked on eBay — indicates you have to buy worms from Thailand for thousands of dollars. THAT doesn’t make sense to me.

What does make sense is a hodgepodge of facts and figures. Not everything old is bad: look how leeches made their great comeback after being discredited for centuries. Now they’re used in microsurgery and reconstructive surgery.

Who remembers Phisohex? When I was a kid, mothers who wanted to be hypervigilant bought it and made their kids wash their hands with it. (Not my mother. She felt soap was perfectly fine.) I loved that acid green plastic bottle it came in. It smelled like the future: ultra clean, faintly plastic. Then all these reports started coming in about damage to newborn babies, who used to get bathed in it in hospitals, and Phisohex (aka hexacloraphene) was taken off the market. (It’s still available as a prescription.)

Recently I’ve heard about the low incidence of inflammatory bowel disease among children who grow up on farms and how vitamin D supplements may worsen autoimmune disease, another instance of thinking you can raise your level (when it’s low because of a disease) and then finding out this is actually counterproductive.

It would be embarrassing to admit I don’t really have a point. We’re not going to do helminthic therapy with Alex, but I wish we could. When I think of those farm kids growing up and never having Crohn’s Disease, when I think of leeches helping newly reattached limbs, it only makes me realize how very poorly understood many conditions are.  (It also makes me think of Mose, Dwight Schrute’s cousin on The Office, who makes infrequent appearances and seems sort of autistic to us. If all this is true, he’s an even more improbable character, since farm children grow up healthier than city children, if they’re not exposed to pesticides or dangerous farm-equipment-related accidents.)

We are still looking for the door. We’d even settle for being nearer the exit.

Sometimes when I wish I were writing on some other topic - knitting, say, or clutter - I think how those subjects can find their way via a twisty path back to Alex. Take knitting. Decades passed before I knit anything, and when I picked up needles again, it was because Alex had arrived and was in the hospital, and I was stressed and wanted to make him something.

Wild Foote sock yarn/Deb Roby

More years passed, and I picked up needles again about two years ago to make mittens for Alex and Ned because I’d read them The Mitten by Jan Brett, which reminded me of the great mittens my grandmother used to make for me. (I can’t find a picture of these awesome skunk mittens. Will have to take a picture of the ones I made.) This triggered a full-on knitting mania, which has stuck mainly because, I think, it’s so soothing. It’s my yoga, I tell people. It’s how I stay calm.

Inside, however, I’m not calm. I’m tense. I’m worried about Alex, I’m worried about money, I’m worried about his future and I’m worried about mine. The only time I’m not worried is when I’m knitting. So I guess that’s why I’m doing it a couple of hours a day.

I wouldn’t give Alex just anything that dissolved in water, despite how Jill chose to put it. But soon after we (mostly Jill) broke the glass ceiling of Alex drinking medicine from a little metal cup a few years ago, I began to wonder what supplements he might take.

The trend started with melatonin and continued with his Topamax. He takes also nothing that I don’t take, and not much of that. (The exception is folic acid and multivitamins, which I heard from Dr. Internet were bad for men older than 45.)

Image: Nassaulibrary.org

Alex’s schedule includes one tablespoon of liquid Vitamin Shoppe children’s multivitamin every morning. Then I give him stuff alphabetically, the only way I can keep it straight, two a day, starting with one teaspoon of children’s acidophilus and one teaspoon Benefiber, both dissolved in water. (Benefiber since he stopped drinking V8 juice months back).

The next day: one B12 capsule and one cinnamon capsule, both dissolved in separate metal cups of water. Day three: one folic acid tablet and one ginseng capsule, both in water. Day four: one selenium tablet and one potassium tablet, in water. Next day: schedule starts again.

Alex’s health regimen is much like mine: Not enough of anything to harm, and delivered because somebody said it helped. The recommendation for acidophilus from the head of a local autism support group; B12’s from an autism dad and AutismOne radio host, who said that in moderate amounts it improved speech; and selenium from Jill, who told me it was good for preventing cancer. I figure his diet is so crappy, the odds of him getting too much of any nutrient are pretty long.

I’d love to add fish oil and magnesium, (heard good things), but they don’t dissolve in water.

More on supplements and autism.

Author Paul Collins (Not Even Wrong) has a great piece in the recent Cookie magazine. Collins, whose son is autistic, advises prospective hosts (parents of the typically developing, most likely) on what to expect and now to prepare if someone’s bring an autistic kid to their house. Interesting perspective and smart piece.

From the e-letter Spectrum parent NYC at spectrumparentNYC@yahoogroups.com:

“Scientists at Albert Einstein College of Medicine of Yeshiva University have proposed a sweeping new theory of autism that suggests that the brains of people with autism are structurally normal but dysregulated, meaning symptoms of the disorder might be reversible.”

Image: FreeFoto.com

“The central tenet of the theory, published in the March issue of Brain Research Reviews, is that autism is a developmental disorder caused by impaired regulation of the locus coeruleus, a bundle of neurons in the brain stem that processes sensory signals from all areas of the body.” The article adds how the new theory stems from “decades of anecdotal observations that some autistic children seem to improve when they have a fever, only to regress when the fever ebbs.”

Alex took a medication once that made him act strange. This happened during a period when he wasn’t especially affectionate, and in the middle of the night he turned around in the crib he still slept in at that time and gave me a big kiss on the cheek. This could just be anecdotal, but maybe he takes after his dad and is a friendly drunk.

He does cuddle more when feverish, though this could be the effect of his need for comfort overriding his autism. Maybe it’s also a fact of seeming to calm down, burdened with the fatigue that comes with being sick, which, oddly, he usually is when he has a fever.

That hot skin makes me feel weak and helpless, and probably always will until he becomes able to tell us exactly how he feels. Though I’m unsure I’d want to heat any part of him in the hope that his autism would reverse, it somehow seems heartening news.

The article is at
http://www.sciencedaily.com/releases/2009/04/090401145312.htm .

Many thanks to Laura at Autism From the Outside for running a review of a chapter from my new book, “Alex the Boy,” on April 6. Hoping to have her here as a guest soon! Autism From the Outside is at http://blog.autismfromtheoutside.com

As an occasionally delinquent autism mom, I don’t keep up with the literature on autism and developmental disabilities. I guess I blew all my research energy on the last few months of being pregnant with Alex and the year-long hospital stay. He’s clearly a boy with a developmental difference, and that’s that.

photo by Finsthwait

But Mel Levine,  North Carolina pediatrician, and author of “A Mind at a Time” and innovator of the Floor Time technique of allowing a child on the spectrum to direct play activities, always seemed like someone whose instincts were fairly sound. I often thought, I should read one of those books. So it’s disappointing that he’s no longer in the helpful camp. Can you honestly separate someone from his actions? I’m not sure I can, even though I’m sure there are people who think you should. For that, perhaps I’ll turn to another book, “Why Good People Do Bad things.”

Levine has had to give up his medical license due to allegations of sexual abuse by a number of former patients who have been coming forward to relate incidents dating as far back as 1987. Angry comments are flying around Internet boards, and I’d just like to say as someone who’s watched stories develop in several newsrooms, the truth is almost always somewhere in the middle.

Levine denies the charges but admits the Medical Board of North Carolina has enough evidence to support the accusations. His books and theories remain, though, as does his organization, All Kinds of Minds.  Time will determine whether Levine’s techniques are valid.

Happy 2009!

We’re leaving tonight on the red-eye to go back from the Bay Area to New Jersey so, in the interest of being able to spend more time in the California sunshine with my guys and my parents, and since it is, indeed, 2009, a few more highlights from 2008.

August means one thing in my household—-two weeks at the beach, at the Jersey Shore. Not surprisingly, it was still impossible to avoid talk about vaccines. A new clinical trial of the GFCF diet was announced. While people have strong disagreements about the “right” of parents to vaccinate or not, everyone agreed that the use of “retard” in the movie Tropic Thunder was unncessary.

Charlie started middle school in September and, by October, he was deep into middle school blues, and Jim and I found ourselves back into the old familiar advocacy mode, including meetings with teachers present and past, Charlie’s case manager, ABA consultants, school district administrators (but not, yet, “legal counsel” of the sort this family in Montgomery County (Virginia) has had to take).

Also in September: A 13-year-old autistic boy treaded water for 15 hours off the coast of Volusia County in Florida, until he was found the next day.

Another study showed that the MMR vaccine does not cause autism.

And, with Election Day nearing, the choice of Alaska governor Sarah Palin—whose youngest son, Trig, has Down Syndrome—-as Senator John McCain’s running mate got the (Special Needs) Mommy Wars going again.

In October, I (former warrior mom that I am) was on a Science Blogs book club panel writing about a newly published book, I get a lot of hate mail”: Autism’s False Prophets by Paul Offit. (And I’ve not been feeling that I need beware Jenny McCarthy and her so-called angry mom-mob; I know that someone’s watching over me.)

More to the point than “debates” about vaccines and autism was the passage of the mental health parity bill.

And then, in the middle of October, was the McCain-Obama debate in which McCain apparently confused Down Syndrome and autism, and after which I was interviwed on Newsweek about the candidates.

Around the same time, Denis Leary did a Michael Savage, Charlie seemed to grow taller every week, and David Kirby exonerated thimerosal, and as quickly said he hadn’t.

November brought a new theory about autism and genetics, another suggestion for identifying autism in infants (”strange play“), and more speculation about autism and schizophrenia as the same. A mandatory autism registry was proposed in New Jersey; researchers began to look for autism’s causes at home; and I attended the November 21st meeting of the Interagency Autism Coordinating Committee (IACC), at which the draft of the Strategic Plan was discussed.

December, this past month, began with Autism Twitter Day, organized by Bonnie Sayers; an exchange about some dangerous ideas about autism, and some events concerning autistic rights, from an autistic girl in Wisconsin becoming a Brownie after being asked not to return to a special needs Brownie troop, to calls for the inclusion of autistic individuals on the boards of autism organizations. (This letter states why.)

And some final thoughts as 2008 ended: What would you like to see in autism legislation? (Something besides insurance coverage for specific therapies.) And isn’t it time for vaccine talk detox? (Yes.)

So farewell to 2008 and onward into the new year, which I suspect holds some more changes all the time for Charlie, and which holds a big one for me, too—-but more on that tomorrow, once we’re back home in Jersey.

I read about plans for a new preschool for autistic children (in Brownsville, Texas, which—one upon a long while ago—-I briefly visited). An occupational therapist is hoping to start the school, which sounds as if it’ll have some emphasis on sensory sensitivities. I read about a new book on understanding autism written by a written by a 13-year-old whose best friend has a younger autistic brother. I think back ten years ago, to the winter of 1998.

That December was the first time I didn’t make it home for Christmas in California since I went to college back east in 1986. Charlie had had a number of ear infections and colds and the like throughout September of 1998 and, with his latest raging infection, the pediatrician told us we couldn’t take him on an airplane for the holidays. Charlie wouldn’t, we were told, be able to stand the pressure on his inner ears—-so Jim and Charlie and I celebrated Christmas of 1998 at the Rio Grande in St. Paul.

We did make it out to California to see my relatives after Charlie’s ears had cleared up, but all was uneasiness. It was becoming more and more apparent that it wasn’t just because of all those ear infections that Charlie was not talking and kept so much to himself in his daycare room. The image that is fixed in my head from that trip is of a very small Charlie standing between the couch in my parents’ study and the coffee table. My parents had given him a V-tech toy laptop. We turned it on for Charlie and he stared in the direction of the screen, while cheerful recorded voices said “press enter! count how many squares.” And Charlie just stood there.

Charlie was diagnosed with autism a few months later in 1999. And I still so often feel that twinge. What if there had been X program when he was just diagnosed; how much might it have helped him? What if we’d been able to move immediately from St. Paul back to New Jersey, what might that have meant?

And then I recall the conversation I had a few months ago with another mother of an autistic son. She is Lila Howard and is 84 years old, and still the primary caregiver for her son, who’s now in his 50s. She noted that we parents today have it “served up on a silver platter.” She was exceedingly glad about this, and her words gave me a wake-up. How many therapies, programs, services has she learned about over the years, and thought about as helpful to her son? How many more will she hear about still—how many more will I?

Now stop right there, I say to myself. There’ll always be “some new thing you’ve got to try” (one hears this all the time, as it is). There’ll always be some fabulous new remedy, or treatment protocol, or super-duper guru therapist. There’ll always be some new formula for hope in a jar.

Or rather, as I think of it—-even over the past two days when Charlie, far away from his usual routine, his usual order, here in California for Christmas, has seem unmoored and hyper-anxious, and trying so deeply hard to keep it together, and not able to at all, at times—-you just have to keep hoping.

And not the least because I want Charlie to know that we always, always believe in him, and that every day we spend with him is the best present there can be, this Christmas and for every Christmas to come.

You could call 2008 a year of autism legislation, with bills proposed and (in Arizona, Connecticut, Florida, Louisiana, Pennsylvania, South Carolina and Texas) passed for insurance coverage for children with autism (of varying ages; for instance, Texas’ House Bill 1919 calls for coverage for autistic children between two and six; efforts are being made to pass House Bill 451, to require certain insurance plans coverage to autistic individuals up to age 18). Via the National Council of State Legislatures, you can access the NCSL Autism Legislation Database, which provides information about legislation in different states. Autism Bulletin also has a map of autism legislation, and here are various posts I’ve written on legislation concerning autism and disabilities. Military families are lobbying to get treatment for their autistic children under the extended care arm of the federal healthcare program TRICARE, as noted in today’s US News and World Report.

But what besides health insurance for autism treatment (which tends to be for Applied Behavior Analysis, or ABA), would you like to see in autism legislation?

This week, the Autistic Self-Advocacy Network has been invited to give input to the Office of President-elect Obama at two meetings relating to disability policy. The first meeting will focus specifically on autism policy issues and the second on health care policy from the disability perspective. ASAN and other disability organizations will be present, and you can email ASAN’s president, Ari Ne’eman, with your concerns and ideas.

Over at Change.org’s Ideas for Change for America page, the top-ranked idea in the education category is about the “Autism Reform Act of 2009.” This proposed Act was posted by Michael Robinson of Wahiawa, HI and from its first sentence, suggests an air of more than emergency:

As a country we have watched Autism Spectrum Disorders grow in a devastating number. Over the last decade it has spiraled so quickly out of control that:

with the 12 points of the “Autism Reform Act” following. Lisa Jo Rudy has offered commentary on this act over at About.com and I’m borrowing her format, quoting the text of the Act and including my comments in italics:

1.) There must not just be one person but an ENTIRE U.S. OFFICE OF COMPLIANCE for Educating Children with Autism. Why “compliance” in particular for this office? Where has (has it?) such an office ever been mentioned before?

2.) The use of Time Out Rooms, Corporal punishments, Restraints, and the high amount of Abuse must be monitored with severe penalties to states and fines or conviction of those that break such a REFORM Law. Ok, but I’d suggest that the use of these—certainly corporal punishment and restraints—should not be allowed at all. There are certainly too many cases of abuse, physical and otherwise, that get reported involving autistic persons and much more needs to be done to promote and train staff in other practices.

3.) School Districts/States must each have an ” Office of Autism Education Compliance or be subject to loss of Federal Funding. Again, “compliance” needs to be explained. And what is meant by “autism education”?

4.) Due Process Hearing Officers must NOT be employees of the state and shall be employed by the Federal Government ONLY. Lisa expressed some puzzlement at this. I’m also wondering at the emphasis in this Act on who is employed by whom and, again, on compliance.

5.) Insurance companies MUST provide the Early Interventions such as ABA Discreet [sic] Trial at no cost to parents. As noted above, while early intervention is needed, autistic children often need therapies and services for many more years. Further, ABA/Discrete Trial Teaching is only one type of teaching for autistic individuals and others also need to be considered, according to each individual’s needs.

6.) Protection and Advocacy MUST be funded properly to allow parents that need help get it without any more then a 15 day waiting period. Certainly parents with a just-diagnosed child or with a child having many difficulties at school need their concerns addressed as quickly as possible. Who would such “protection” and “advocacy” come from?

7.) Grants for research, education, and non profit organizations for those with Autism Spectrum Disorders must be made in the amount of 5 billion dollars.Why this particular figure of mondy and what kinds of grants are being called for here>

8.) Relief for parents who have paid out of pocket to educate their children must be made swiftly with 100% reimbursement. Who is this reimubursement to come from and on what grounds? Only for educational services? How much of this “relief” will be compensated? (And there may be some concerns in the wake of stories such as this.)

9.) Behavior Intervention Plans must accompany all Individual Education Plans.My son’s IEPs have always included such Behavior Intervention Plans (BIP)—-parents have the right to ask for such in a child’s IEP, and to make sure that the BIP is created under IDEA regulations.

10.) Insurance companies must make available all resources for children and adults with Autism Spectrum Disorders including but not limited to any items deemed necessary by the physician for the treatment of metal toxicities and any other theraputic [sic]orders their physician may order. Interesting to find mention of “metal toxicities” and of biomedical/alternative medicine theories about autism in the Act. Is there an intent to try to have such treatments (which are not supported by the scientific evidence) covered by insurance?

11.) The Autism Reform Act shall consider all Autism Spectrum Disorders including Aspergers. Ok; the possible revisions to the DSM might also be taken into account.

12.) This Reform Act must be ‘open’ for additions as needed and create a 12 parent panel to propose such additions.Definitely seems essential to keep this Act as “live” and “in process” as possible—-why as panel of 12 parents? Who would choose these parents? What about teachers, scientists, and others?

What you think about the “Autism Reform Act”—–again, what do you think legislation about autism should include?

With legislation for insurance for “autism treatment” under consideration around the country (in Virginia, in Florida, in Illinois), a question: The “treatment” called for is principally in the form of Applied Behavior Analysis (ABA). What other treatments might you wish to see covered and how might they be justified as the sort of treatment and therapy that health insurance must provide for?