ASDworld

Placebo effect and autism

We all know about the placebo effect, but we don’t really know how it works. It does seem, however, that there’s some mental element to the placebo effect, even to the point that recent studies show that if patients know they are getting a placebo (no double-blind there!), they still exhibit a placebo effect.

A question that occurred to me recently as an interesting angle: do children and adults with varying presentations of autism experience the placebo effect in the same way – meaning under the same circumstances and to the same degree – as folks with NT brains?

What does creating employment for ASD adults look like?

This short film, Employing the Full Spectrum tells the story of a family in Florida that built a car wash business around their adult son with autism. Most of the employees, in fact, are on the spectrum. The young men working there talk about what it means to them, and the father running the operation comments on the favorable qualities of the employees and makes it clear that this isn’t a charity.

What business would you build for adults on the spectrum? I personally think about hydroponic or aeroponic or organic farms, where clean and safe living conditions, hard work, and self-sufficiency can help ensure sustainability that government programs cannot promise.

Six Flags NJ – bring a doctor note

This summer, I finally managed to stop in at the guest services building (which is not the main guest services, so ask first before you wait in the line) at Six Flags in Jackson, NJ. I picked up the Equal Access Pass for my son with ASD.

The process was super-fast and painless. The pass allowed us to either enter through the exit immediately or come back through the exit at a designated time to avoid simply waiting in the line.

Today, I received an email from the park directing me to their new page on the “Attraction Access Pass.”

Six Flags offers an Attraction Access Pass for guests who are unable to wait in ride lines due to a disability, mobility impairments, or certain qualifying impairments. Beginning November 7, 2015 any guest requesting use of one of these special passes will need to provide a doctor’s note at Guest Services at the time they pick up the pass. This new program replaces our old Equal Access Pass program.

So get your note from your child’s doctor in advance and it will go more smoothly for you.

Non-jobs for people with autism

As many of you know, my son with autism is still a young child. But already I see that I am more and more thinking about the next 80 years of his life. I am aware (not ready to resign myself to ANYTHING at this point or any other, ever) that his life may be “non-traditional” in terms of job, home, and family.

In the past, I’ve thought about the idea of setting up an organic farm where he and folks like him could be self-sufficient, eat well, have good, honest, work in a close-knit community setting, and ultimately build a future for themselves. I’ve spent time thinking about how to restructure and break down even computer-aided instruction in programming for kids on the spectrum. Kodable is a great fun introduction to concepts and thought processing, but it doesn’t teach coding and programming in a way that pays you money.

I’ve thought about using Amazon Mechanical Turk to structure specific tasks. I’ve thought about how to package up those common task types and create instructional programs to actually teach them.

This article describes two smartphone apps that offer random tasks to people through that channel. The samples seem very human-oriented, i.e., things that computers can in fact not do. As a plus, though, they seem to be tasks that are out in the world rather than in front of a keyboard. For many on the spectrum, avoiding isolation, whether internal or external in source, will be a lifelong challenge. I like the idea of my son walking through a grocery store more than him sitting at a table typing alone in a room.

I can see that I should start building a platform for collecting these types of small alternative task channels (for lack of a better term) and categorizing them by a few major characteristics – online, offline, speaking required, reading level, type of output, freeform vs. structured. As with any NT person, skills will always have to match up; but I suspect these other characteristics can be critical deal-breakers for someone on the spectrum, and pointing a person in the right direction is hopefully going to be a big help.

What ideas or dreams have you thought of for the person on the spectrum in your life?

Autism Speaks housing survey – responses needed

Autism Speaks is seeking responses to this housing surgery from people with autism aged 14 and up – and their caregivers. Take the Autism Speaks Housing and Residential Supports Survey to share your needs and hopes for the future! Complete it for a chance to win a FREE iPad! http://www.autismspeaks.org/housing-survey

What chores does your child do?

I just came across this article about a boy whose family has integrated him into family chores in the classic ABA model: harnessing natural motivations, creating discrete tasks, and implementing positive reinforcement, both tangible and social.

My older son is 8, and he’s certainly capable of many things. But I haven’t formalized the chores for him or my younger son, 6. Perhaps it’s time to do that. (And yes, I believe that self-care leads to self-reliance, which is the core of self-advocacy.)

I think dishes and the dishwasher, vacuuming, and picking up clothes as a precursor to laundry (have to install a washer/dryer in the new loft apartment we just moved into). I know that older kids at Reed Academy have learned to do laundry

What chores do your kids do? And at what ages?

Pathway to individualized therapies

While the I in “IEP” mean “individual,” many parents question how individualized educational and treatment programs are. When every child in a class has the same amount of classroom time, PT, OT, and speech therapy, they wonder where the I comes in.

One problem I see as a parent is what seems to be a disconnect between diagnostic, analytical, and assessment tools on the one hand and specific treatments/programs on the other. A physical therapist can assess a range of motion problem on a post-surgery shoulder and has a suite of exercises known to improve range of motion. A speech therapist can identify a lisp and use specific exercises to teach proper teeth, lips, and tongue placement. But in the more nebulous world of cognitive processing, it’s a world of best guesses.

IQ tests yield many subset scores, but no one has yet been able to explain to me which programs would be more appropriate for my son given his individual mix of skills and evident difficulties. For example, he is a great speller with a good memory for words. Teaching spelling seems like an unnecessary use of his classroom time, and his teachers certainly agree.

But other, more complex issues, such as breaking down his reading comprehension skills, do not, at present, have such tailored answers — at least, none that I’ve been able to uncover. It’s as if the psychologists who divine these distinctions have never corresponded with teachers who teach these skills

This article describes an early age (2) experiment that might create a diagnostic tool to classify kids with autism into different groups related to the way their brains function. The author correctly surmises that these sorts of precise tools may help guide children into treatment/program paths that will better address the precise nature of their difficulties with language.

It’s my goal that we learn how to match each assessed weakness with a specific set of programs and therapies to address that exact weakness.

I wish research on things like the n-back “game” to improve executive function crossed over into the world of our kids.

World Autism Awareness Day 2013

Today is World Autism Awareness day. My Facebook profile picture is my 8yo son Dylan, showing you, and me, what he thinks of autism. I imagine it’s something along the lines of “I just want to do what I want and have fun like every other boy. Sometimes it’s just hard.” Other times I imagine that’s it’s a hearty “fuck autism,” like when he’s scrambling up the rock climbing wall better than any 8yo in the place.

But he probably doesn’t think about it. He just moves through life, doing what he can and frustrated when his reach exceeds his grasp — just like the rest of us.

So, be aware, be supportive, and perhaps this year you’ll take some action, however small.

Awareness only gets you so far. I’d venture that Dylan is unaware that he has autism. He just acts.

Thanks, Ridgewood Soccer!

Summer is well past over, and one hurricane, one Fall season, and a few major holidays later, there’s finally some time to think about it.

I’d like to say thanks to the Ridgewood Soccer Association, which runs a special needs soccer program alongside the large program for typical kids in town.

What made this special for me, and my sons, is that they could both participate in the same sport and share many of the same experiences while still having a good time appropriate for each of them.

Here’s a brief rundown of the season, including lots of extra gratitude for the RHS women’s soccer players who helped out every Saturday. Dylan’s in the grey shirt in the last picture!

Knowing that my community — not just the school district — cares about my son in this very visible way means an awful lot to me. I really like this town.

Damn, science!

I really love this site; she’s got a way of focusing on clarity of communication.

Damn, science!

Yes, I know that many parents don’t agree, many more worry, and even more are questioning. Some of those are people I personally like and respect. Feel free to sound off in the comments if you want to. I won’t censor any comments that are remotely on point.

My response in advance: if you question something or wonder something or want to discredit something, do it with evidence, not just conjecture. I’ll believe anything that can be proven. I’m skeptical of anything that can’t.