Have you bought “Your Baby Can Read”?

It’s come to my attention from a friend, classmate, and father of a child on the spectrum that the “Your Baby Can Read” program was recently exposed (challenged, to be sure) as a likely fraud. It was the subject of a segment on the Today Show about a week ago.

Here’s the clip:

Apparently this program has been heavily marketed to families like ours.

There is at least one lawyer looking into things, and I’ve agree to help him out. Here’s more information (PDF link) if you’re interested, or you can contact me here.

Improve learning and retention of flashcard info

So many, many flashcards and pictures around our classroom (what the unitiated refer to as our “playroom”) fill bins and bins, sorted into ziplock bags.

This Lifehacker article suggests that using a slightly more unusual font, such as Comic Sans MS or Bodoni MT, had 14% greater retention, even at different font sizes.

One group was given the lists in 16-point Arial pure black font, which is generally regarded to be easy and clear to read.

The other had the same information presented in either 12-point Comic Sans MS 75% greyscale font or 12-point Bodoni MT 75% greyscale.

The volunteers were distracted for 15 minutes, and then tested on how much they could remember.

Researchers found that, on average, those given the harder-to-read fonts actually recalled 14% more.

The original BBC article has a picture comparing the typefaces used in the Princeton study.

I think this would make a great master’s thesis project for an aspiring BCBA. The ease of changing fonts for new materials is so tiny that a 14% gain is literally like thousands of dollars of free therapy!

With as much detail as great therapists put into breaking down tasks, responses, prompts, SDs, reinforcement, motivation, and everything else that is concentrated into each teaching-learning interaction, why wouldn’t we now start paying attention to something a whole lot easier to fix?

I hope to see a standard on this develop over the next year here in Northern NJ.

Tell us about your health insurance

Since the passage and effectiveness of New Jersey’s autism insurance bill, I have been struck by the odd circumstance of it being so difficult to figure out if you have coverage under the law.

It took a while, but I finally created a system to share information about the health insurance benefits provided by our various employers and their health care companies, here in NJ and elsewhere.

Here is the background and plan.

This is a direct link to the actual form.

I will post updates to the collected information here and brief pointers on Mosaic from time to time.

Please contribute what you’ve learned about your own insurance in NJ; this will help families entitled to the benefits of NJ’s autism insurance bill get what they deserve.

Making enemies of parents and teachers

This post on paying for our own professionals from rickcolosimo.com was sparked by a health-care editorial, related to prohibitions on sharing legal fees with non-lawyers, and now belongs here.

The phrase “doctors and patients as enemies” is what knocked me over in the reposted editorial by Milton Friedman. Is there anyone who doubts that very many, and certainly too many, parents and schools see themselves as adversaries in the special education process?

This mindset comes from a few places: scarcity (only a few districts would oppose services paid for by someone else), fear of responsibility (some districts and teachers don’t want to be accountable), and simple distrust and fear all around (parents initially have few skills to address autism’s challenges and look to experts, expecting solutions).

But we can probably all agree (except for the misanthropes (and I need a special word for those who dislike children and people with autism)) that this shouldn’t be how it is. Many parents I’ve met who are unhappy with a child’s placement almost uniformly started out expecting the school’s child study team to have the child’s best interests at heart, finding out later that the placement isn’t merely right or wrong, appropriate or not, but “negotiated.” And, beyond the simple disconnect with the statutory imperatives of IDEA, this concept sets up parents to be wracked with guilt because there is an implication that they could have always negotiated for “more” or “better” and at the same time forces parents into antagonistic relationships with districts because the school could almost certainly have “given more.”

By taking the placements for children from autism from a research-based model to one that is perceived to be driven by other factors clearly NOT based on what works for which children, this dynamic is created. And it flourishes festers because there’s no clear path out.

I gave a presentation last week on NJ autism insurance reform and discussed the possible silver lining for parents of the golden lining of insurance coverage for medically necessary ABA and related therapy for children and adults with autism: to me, the notion that insurance companies will be paying for ABA and other therapy mean that they might investigate ways to achieve similar outcomes for less, or better outcomes for the same money. If they can figure out how to know which drug to give to which patients, maybe they can focus their much larger wallets on the problems facing our community.

Autism’s urban legend

Jen Laviano (@JenLaviano) has a post up this week that mentions my un-favorite urban legend about autism: that there are parents who get their kids a diagnosis so that they can get “extra help” from their school district.

Jen talks about having discussions with parents, friends, relatives, teachers, etc. to explain the value of special education laws and our goals of educating kids who fall into these statutory groups.

Jen, it’s not just friends and acquaintances who ask strange questions with missing premises. The anguish some parents feel is simply incomprehensible for parents of typical kids. I have colleagues, some of whom are also lawyers, and who I know/believe to be generally kind people.

Yet they will repeat (more than once) this urban legend about parents wanting to have their children classified so that their kids will get extra services in school. I have yet to meet one of these parents, of course. I doubt that the benefits of “extra help” will ever overcome the stigma of “special ed” in any parent so focused on the outcome for her typical child.

If you don’t think “special ed” carries any stigma, search twitter for #specialed and see what pops up from people outside of advocates, lawyers, and parents. These folks had to type that in on purpose.

I gently remind them that while that is a hypothetical possibility, it’s easy enough to identify far too many children whose deficits are so great that it absolutely interferes with their daily existence. “Like my son,” I say.

Perhaps that’s one of many “next jobs” on this front: identify these parents so ignorant of the label that they will push NT kids into our wonderfully effective special education system. Because then I can send all my clients’ kids to that school district where special ed works so well.

Quick question: who’s interested in an autism-focused IGNITE event?

“Ignite” talks are presentations composed of 15 slides that automatically rotate every 20 seconds, meaning they’re only 5 minutes long.

Since I’ve been working on a similarly sized presentation to introduce my ideas on a comprehensive ASD curriculum planning & tracking tool, and since March 1-4 is Global Ignite Week, I wondered whether there are others in our community who would like to present a short presentation in this style.

There’s certainly more that can be done, but perhaps some focus might be an interesting way to get ideas on the table and excite each other about what we’re thinking in the background.

Please leave a comment if you’re interested in presenting or helping organize such an event. If there are only a few of us, perhaps we’ll piggyback on some NYC events that same week.

“Stealing” money from special education?

This article on the siphoning of stimulus funds for special education to general education is one of the few I’ve seen in the WSJ on special education. By itself, I think that’s a major achievement — it means that special education and the plight of students and the often under-funded special education departments is getting more attention.

My fear is that even good people, friends and relatives, colleagues and classmates, will see this as a good idea, as a way to protect general education kids. My fear is that they won’t think about the tremendous needs of so many of our children, not just those on the spectrum but also those with other developmental disabilities, those who are deaf and blind, those with dramatic medical problems.

This isn’t “budget realignment;” this isn’t “creative accounting:” this is stealing the future from these kids. If our “educators” do this indirectly now, how long until they do it directly? Is it just a matter of time?

When research isn’t science

Some time ago, a link to this quasi-review article crossed my desk. Briefly, it explains why, in the author’s opinion, the subject articles on genetic research in autism are somehow untrustworthy or flawed.

In some ways, it’s well-written. I like the bibliography. It’s all Nature, Science, NEJM, and Nature Genetics.

But to me, the real story is what’s not on the page. It’s too bad the author didn’t cite leaky gut papers from those journals or anything related to his “environmental” arguments/theories/guesses. That’s the real story – he can complain about these genetic studies because they’re published and methods are revealed and all the rest is an open book — including funding sources, conflicts of interest, and even access to many of the underlying samples. In some cases, the journals themselves require researchers to share all their data even if the lab wants to keep some of it private so they can look for more publishable findings.

Anecdotal evidence isn’t. Much of what is passed off to parents as “research” or “science” or “medicine” is so opaque or poorly structured that no one writes about it critically. It’s not deserving of criticism, and the practitioners who operate in this way don’t really complain about being shut out of mainstream scientific discourse. They haven’t even ante’d up the price of admission to the discussion.

I asked a research scientist once about whether there was any point to telling these other doctors and “researchers” (and I feel compelled to put it in quotes) about what constitutes a reviewable study. The response: all they have to do is read the journals and they can see what types of studies get published in terms of study design, replication, confirmatory evidence, and disclosures about ancillary matters (conflicts of interest and funding).

When you think about it like that, you see that the real reason the “alternative” and “biomedical” research is ignored or rejected is that it just doesn’t get presented in a way that looks like what society has spent hundreds of years refining as science and the scientific method.

Yes, it’s true that this post is aimed at discussions about the science of autism. But the same issues are there when it comes time to select specific interventions for remediating reading problems for children with learning disabilities. Some things work, and some don’t. If there isn’t research supporting the use of a particular intervention in the circumstance that a specific child presents (not just children in general or dyslexics or “most” autistic children) and if another reasonable intervention isn’t identified, then good advocacy demands that an IEP include a process for determining whether progress is being made and whether that progress is satisfactory.