More thoughts on prevalence & DSM-V

Here are two more reviews/discussions of the CDC prevalence report from sources I believe to be intelligible, authoritative, and well-meaning, as opposed to fear-mongering, uninformed, and unskilled).

The Autism Science Foundation describes the basics of the report in cogent language and provides a little education along the way, helping the reader understand what is being measured and what is not as well as the potential sources of error.

This DSM-V field testing report from Autism Speaks’ Dr. Geri Dawson is a helpful letter describing the types of studies going on, as parents had hoped, to sort out what the practical effects on diagnosing children are going to be.

The obvious fear from parents is that this chain is not only possible, but deliberate:

DSM-IV => too many ASD findings => too many $$$ for services => desire by insurance companies and districts to spend less => DSM V tighter criteria => fewer diagnoses => reduced services from schools under IDEA (insurance still a mixed bag at best in spite of state mandate laws).

Descriptions of the studies being done to identify empirical differences as opposed to theoretical ones will help shed light on the situation, and the results will hopefully speak for themselves.

 

On a related note, let’s all recognize that the main reason the DSM criteria are controversial is because of the unholy[?] link between the ICD codes assigned to the diagnoses and the insurance coverage. The tightness of the linkage between the specific diagnoses and IDEA eligibility is something I’ll have to review in a future post; it normally applies only to children over 5 where the generic “preschool disabled” classification is no longer used and children are specifically classified.

If coverage for therapies and treatments were not affected, improvements in classifying different “phenotypes” of autism would be beneficial as parents and professionals narrowed in on likely effective treatments more readily and information sharing was improved because of closer connections between studies and specific diagnoses. But that’s just how I think about things. We’ll have to see what happens.

 

Autism costs more than money

 

Here’s a short CNN piece reflecting on the costs of autism. It’s not news to those of us who’ve been living with it, but I’m sure it will surprise the heck out of those friends of yours and mine who don’t know the numbers.

But there’s another poignant moment in this piece that is even harder to communicate to those around me, even to my three closest friends (the “newest” of whom I’ve known for over 20 years). It’s when the mother of the older boy speaks frankly about her worries for the future. I know in my heart that every parent of a child on the spectrum, no matter what level of impairment the child has or had, has these fears.

In showing what this feeling looks like whenever we let it out (almost never to parents of solely NT kids, of course), this piece accomplished something far more valuable than shedding light on the tallying of costs and societal losses from our struggling children. It’s showed our friends why we struggle, why we’re distracted, why we smile faintly at spelling bees and private schools and middling college opportunities.

We not only have these fears, but as we’ve grown close to others like us, older or younger, with boys or girls, we know parents who feel our same fears. And as for me, I know that if my son could come home from school today and decide not to have autism, my feelings will always stay on the same path as the parents I know.

(Free wisdom: it’s only been as a result of this past 4 years that I can begin to understand the inner workings of the mind of a friend I know who has a child with leukemia. My heart goes out to her because I know that although I have seemingly insurmountable fears, I don’t think they compare.)

How have you communicated these deep feelings to your friends and family? The closest I think I’ve really come was in sharing a phrase from a panel where I presented as a parent: “Hope and fear, delicately balanced.”

Get dinner in Glen Rock NJ on May 2 and support Autism Speaks for free

My friend Christina Peck is helping out with a fundraising event at Francesca’s in Glen Rock on Wednesday, May 2.

Every order leads to a donation to Autism Speaks. Christina is a very involved parent who has helped many families with her book, Blessed with Autism.

I’ll be there, and you might as well too. We all gotta eat, right? Details here (PDF) and here (PDF) .

Recent ASD developments

It’s time once again for the GoTheDistance for Autism bike event in north Jersey. My son can now ride without training wheels, so please support him here: http://tinyurl.com/DylanTrain (opens in new tab)

We’ve all been busy digesting new incidence/prevalence numbers, new DSM criteria, fundraising, and, of course, IEP season. Here are some highlights:

Prevalence: AutismNJ extracted this from the CDC’s recent report:

New Jersey: 1 in 49
Boys: 1 in 29
Girls: 1 in 172
Average age of autism diagnosis is 3 years, 2 months old (earlier than in previous studies)

For more, visit Autism Speaks’ page on prevalence.

Webinar on Key Components of school programs

Our friends at rethink autism are presenting a webinar that will be valuable for a broad number of parents with children on the spectrum.

From their announcement:
School districts nationwide are challenged to keep pace with the complex needs of a growing autism population. This webinar will define 7 Key Components that research and practitioners have identified as necessary to effectively support students with autism.

It will provide a framework for district leaders to allocate resources, for teachers to coordinate direct services, and for parents to advocate, all in an effort to improve supports for students on the autism spectrum.

Join Jamie Pagliaro, Co-Creator of Rethink Autism & Former Executive Director, NY Center for Autism Charter School, for this presentation. Click below to register:

Thursday, August 4, 2011 at 2 PM EDT

These folks are both good at what they do and care about our kids. If you’re new to this and starting to learn how to evaluate programs, or your child is moving to a new environment, I’m convinced it will be worth your time.

Augcomm New Jersey: augmentative communication meeting

Augcomm New Jersey is being produced by Eric Jager, who I’ve met. He’s a parent and skilled in meeting and event planning (at the big-boy level). I’m sure this will be a well-planned event with useful information for participants.


Registration is now open for Augcomm New Jersey, a forum on augmentative and alternative communication (AAC) for parents and professionals.

Expert presenters from Eden Family of Services, Disability Rights New Jersey, The Boggs Center and the College of New Jersey will offer process-oriented advice on funding, assessment, AAC in the classroom, parent/professional collaboration in implementing high-tech and low-tech AAC solutions and other key topics.

Come and network with parents, speech therapists, special education advocates and others with a stake in helping non-verbal people to communicate effectively.

For updates on this information-packed event and a quick video of AAC in action, visit the Facebook event page.

To register, go here: http://augcommnj.eventbrite.com

Need some flyers for your school district? Just ask Eric.
Questions? Send him a note or tweet.

Rick’s first fundraiser finishes on 4/9

Here’s a short link to one of my other blogs, Watch Rick Train. I’m raising money all year for Reed Academy, starting with the Tough Mudder in Pennsylvania tomorrow and finishing with Ironman Florida in November. My goal is $140,000. This is the start.

Thanks for your support; I’ll post updates at the WRT blog.

Parents: welcome to bad parts of SpEd world

Apparently No Child Left Behind is failing because it’s revealing that schools are leaving children behind. And so schools, rather than contemplate that they’re not doing well, are suggesting that goals be changed so that they can succeed.

Seriously? They’re going to change the rules because the schools are failing? Isn’t that exactly the point of NCLB in the first place? Standardized testing that couldn’t be tweaked, sidestepped, or BS’d into meaninglessness?

And redefining “proficient?” Are you kidding me? There’s a specific reference to a state that redefined “proficient” in a subject to increase the pass rate. What’s next here? 2+2= (any answer from 3 to 5?)

The funny thing, the tragic thing I suppose, is that the constant redefinition (always downward, of course) is exactly what happens to special ed students when schools fail to meet goals they set in advance. This “facing reality” is vastly more common with teachers and schools and districts that don’t know what they’re doing and don’t care. Those that care make changes. Those that know what they’re doing make changes.

This article on NCLB explains exactly why my take on special ed at this point is that it’s all about performance management. Goals are relatively easy to set, the pace should be adjusted on a student by student basis, and then it’s a matter of performance management to figure out what’s going on. Are there organic deficits in the child that limit learning pace or ability that were not known in advance? Maybe some element of adjustment is appropriate, such as when my son’s behavior took a six-month detour into extreme silliness and interfered with his overall learning during that period. I couldn’t imagine holding the school or the district responsible for that.

But when a kid has a 100 IQ, there shouldn’t be a lot of excuses for maintaining, and eventually increasing, pace of learning. Lots of data can solve all the objections that are running through the heads of the people who don’t want to be held accountable for this right now — comparing apples to oranges, in terms of kids and learning objectives, being the main source of objections. But just because things are difficult is no reason not to do them. My son doesn’t have a choice; neither do I. Neither should our schools, not if they want to regain the position of authority and trust they once had in America.

My younger son will be starting kindergarten in the fall. I have no illusions that there will be far less management, even in terms of goals for the year, than for my son on the spectrum. But our district is great on the special ed side; I feel like the people I work with care about my son, I feel like they care that he makes improvements, and I feel like that care isn’t motivated solely by eventually making his program cheaper (although I would be fine with motivating good behavior with monetary savings!).

What are your experiences with general education goals and objectives? Do teachers look at you cross-eyed when you talk about such things?

Why my iPad lives at REED Academy

Here’s a great new app, intended for the visually impaired, that recognizes US currency in realtime.

Yes, my old iPad doesn’t have a camera, but the accessibility of these tools to my Dylan is just amazing. I’ve started to take nearly every idea for a program and think about how it could be legitimately — meaning better, simpler, more generalized, automatically data tracking & graphing — be implemented with these tools.

Thanks, Steve. Maybe you knew this, or maybe you just had faith. But still, thanks.

Does ABA work on typical kids?

I enjoy reading Eric Barker’s blog because he cites to published research on interesting topics. I think his tagline should be: “not what you thought.”

This post questions the wisdom of using rewards to encourage desired behavior, namely eating vegetables. It caught my eye for lots of reasons:

  1. School’s been expanding my older son’s menu for months
  2. I’ve been using the same techniques on my younger neurotypical son
  3. My family adopted ABA as our primary method of helping Dylan after a research review yielded no reliable support for any other technique

So, seeing someone question the efficacy of a fundamental ABA tool, positive reinforcement, seems a little funny. But as my readers know, I am a huge fan of this quote from Milton: “I will not praise a fugitive or cloistered virtue.”

In my mind, science is a method, not an answer. So I welcome any research that helps us figure out how to help kids like mine.

Oh, and of course the answer is that reinforcement improves behavior more than no reinforcement, and although focusing on eating vegetables without reinforcement improved behavior for a few months, after three months the un-reinforced kids showed no difference from before the experiment began. Put differently, failure to reinforce meant that the efforts lasted less than three months.

So reinforce, reinforce, reinforce desired behavior. It works on everyone.

Do you have a story about using ABA principles on your NT kids, or, for extra credit, coworkers or bosses? Share your stories in the comments!