Reaching My Autistic Son Through Disney

Reaching My Autistic Son Through Disney is a fascinating read. This is a really long excerpt with a book coming out (by a Disney publisher in interests of disclosure) in a few months. Also, I have a 9 year old daughter on the autism spectrum so this subject interests me more than most folks. That said, if you have the time, it’s really something unique that may grab you. Trust me, it’s not a national enquirer style “vaccinated autistic childn healed by Mickey Mouse hug” story.

Long story short, it’s the journey of a family with the youngest of two boys who went from a normal kid at age three to becoming a non verbal child on the spectrum very quickly. And then the familial 20 year journey, as narrated by the father. Disney animation movies were extremely popular, as they are with many kids, and became a key family activity.

The only quote I will share from the teaser first 2 paragraphs: **In our first year in Washington, our son disappeared.

Just shy of his 3rd birthday, an engaged, chatty child, full of typical speech — “I love you,” “Where are my Ninja Turtles?” “Let’s get ice cream!” — fell silent. He cried, inconsolably. Didn’t sleep. Wouldn’t make eye contact. His only word was “juice.”**
Spoilers to follow:

Fast forward a few non-verbal years, and thousands of viewings of Disney movies, and their son uttered his first real words, and they came from a Disney movie. Thus the next phase of the journey began where the family discovered how to use Disney as a tool for communication. Walt Disney always had a guiding principle of the movies should be understood even without the accompanying voice track. For a child that is effectively locked in without speech, this can be pretty interesting.

I’m still thinking about the article, parallels with my child, implications as a tool kit for my child, etc. It touches close to home and I’ll be back.

Anyhoo, throwing this out as something that you may find fascinating on many levels and not just autism.

(Mods, I wasn’t sure if this should be MPSIMS or Cafe Society).

I didn’t have a chance to read it yet, but it sounds interesting.

However, the title of your thread jumped out at me. I was thinking that I had missed several years of your life! My first thought was when did you get an autistic son? I knew about your daughter, of course, but didn’t think there had been enough time for you to have had a son and for that son to be diagnosed.

Everything going well? How is the therapy?

I read the article, which was interesting. I was amazed that the writer mentioned that his family spent $90,000 each year on therapy, education and other expenses for his son. That’s a lot. Now he was and is a journalist with the Wall Street Journal so perhaps they were able to afford that. But what do less well-compensated families do?

And I liked this bit, when the autistic son was 6 1/2 and the older son was nine.

What we do is hope our school system has competent therapists who aren’t overworked to the point of barely checking in when your child is supposed to get 2 half-hours a week one-on-one. And hope that our insurance covers the therapists/neurologists we’ve heard so many good things about instead of a training center for students like we got. Inexperienced, barely-trained students who don’t actually know how to deal with children with autism.

Anyway . . . -sigh-

It sounds like a good read. I swear King of the Hill did something for my daughter, no kidding. She watched obsessively for at least a year, maybe closer to two. When she started talking it was with an Arlen, Texas accent.

I read the article - wow. Just . . . wow. One of the most interesting parts was when they talked about how “normal” children develop a sort of voice in their heads that helps them solve problems, a voice that everyone has but doesn’t really notice. The boy in the story was able to gain that tool by using his “sidekicks”. It’s fascinating on so many levels.

Every time you read a tale of a child with autism who has a miraculous response to Disneyland, horseback riding, dolphin encounters and the like, go back and follow up on these cases a few years later - especially if you can get a neutral third-party report. There are few cases where the “miracle” doesn’t basically evaporate.

Autism can be dealt with effectively, with lifelong results, only at the earliest stages. Once you’ve missed that window, either through poor parental choices or ineffectual treatment, palliative therapy may be just as miraculous as a shot of morphine to a chronic pain sufferer, but it will have about the same lasting effect.

Parents with a new diagnosis need to pick a working therapy and put everything demanded into it, not dither and rush out after pointless miracle fixes. The choice is between a child that grows into at least a self-sustaining adult and sometimes a fully-functional one, and a lifetime burden for which there are limited miracles.

Are there any actual studies on this? You hear it often but from what I’ve seen while therapies like ABA are helpful they are no magic bullet either.

Note that in the story from the New York Times Magazine, the kid in question is now twentysomething and the autism started at age three. And the story includes video of the kid in the present day. So we don’t need to wait to follow up on this case.

Amateur Barbarian, did you even read this? I hope I made it clear in the first post that this is not a magic Mickey hug story. And if you actually read the article, it’s been a 20 year journey with his son becoming reasonably high functioning. I believe the medical community would say that the earlier the intervention the better.

Certainly, in my parent experience with a child on the spectrum, I’ve never heard any consensus claim the “only at the earliest stages.” And each child on the spectrum is different with different approaches that may or may not work. ABA therapy is not one single therapy, but thus far seems to be one of the most effective solutions. And it’s no magic bullet, costs a lot (we’re about $50k per year - mainly insurance), is a lot of work, and comes with no guarantees of success.

There are endless studies and publications. I agree that there is no magic bullet or assured outcome, but I’ve seen plenty of real “miracles” and a very high success rate for genuine intensive ABA. (I add the qualifiers because ABA, and even “intensive” are subject to some slippery uses.) Intensive ABA is incredibly demanding on provider, child and parents and there is absolutely nothing surprising that many providers are not really up to the job (school-based programs being nearly total failures), many parents can’t support the process and that as a result there are many failures attributed to “ABA.”

The bottom line is that there is NO easy road, so you can choose what seems to be an easy path and lock parent and child into a heartbreakingly awful life, fiddle around with a hard path and pay at both ends, or recognize that a hard road through is the only one with any possibility of a good outcome.

But like all other difficult roads, the tendency to dismiss the hard, embrace the easy and then wallow in justifications and self-delusion all around is very high.

I am married to a world-class expert in the field, who over 13 years sent 50% of her clients to regular education (no support/no special qualifications), established the path for long-term home/family life for another 30% or so, lost about 20% to parents who could not maintain the discipline and support (not always their fault), and had a net failure rate - no real improvement or good long-term prognosis - in something under 10%, which included some severely disabled, retarded and medically compromised children. She did no cherry-picking of subjects (hi, Dr. Lovass!) and in fact tended to take the clients other providers rejected. Oh - this is a sample of about 450, by the way.

So I know what miracles really look like. Mrs. B. does, too; she read the article this morning and literally threw it across the room. It’s not that it may or may not have worked in this kid’s case; it’s that the odds of it, or any other late-stage palliative therapy, working for any significant number of other kids are nil. (Yes, childhood leukemia sometimes spontaneously vanishes. Go ahead, hope for that instead of living with the hard, hard treatments and regimen that have a good chance of curing it.)

Yes, we do. The kid’s had his shot of morphine; let’s wait until it wears off. Bookmark this and get back to it in a few years.

[hijack]AB, with all due respect, maybe you should, ya know, actually read the article or get your expert miracle worker wife into the thread. Since what you’re pontificating about isn’t really related to the “Reaching My Son Through Disney” article nor this thread. Thanks in advance. [/hijack]

Back to topic. “Reaching my autistic son through Disney” had some interesting ideas. Most essentially, that the use of widely known Disney animations (or frankly others) as a tool kit that can be utilized by some kids on the spectrum. Spectrum kids (and mine sure does) can watch the same episode over and over and over and over and can do so literally hundreds of times.

An example would be instead of saying “swim like a fish” one could say “swim like Lilo when she goes to feed Puff.” The latter may be a better construct and context for someone who’s watched it hundreds of times and maybe identifies to an extent with Lilo. Maybe that’s helpful when trying to learn how to swim. Maybe Lilo does a swim stroke that we’re trying to teach. It might be a good, comforting example.

Or to use a phrase from Disney like a saying or colloquialism. Many Disney lines are colloquialisms. I can certainly see the advantage of that to someone with limited expressive skills. I can relate. When I was a Chinese student, I learned that I could use well known sayings to express something extremely complex that I didn’t have the language skills for.

And I can see leveraging Disney for peer to peer interaction. Spectrum kids rarely have friends, and pretty much all kids have a shared Disney type experience.

And no one, including the author, is suggesting using Disney to replace ABA or other therapies. But maybe as another tool to try. Christ, we’ve certainly tried multiple “approved” Autism/speech/communication therapies such as PEX (which just didn’t work in our case despite working on it really hard for a really long time with professionals involved). We’ve got an ABA program manager, several therapists, about 25 hours of ABA per week, daily communication with the special needs program folks at school, and then all the personal time and effort that our whole family puts into it 24/7. And just so it’s clear, ABA and the special needs school program are the core of our approach. The author’s experience and his son’s success says maybe there is something in there that can also be useful to my daughter on her journey. And it was a fascinating read.

You keep mentioning ABA programs. I wasn’t aware that the American Bar Association was involved in autism education, but if they are, good for them.

Applied Behavioral Analysis. Wiki’s take here: http://en.wikipedia.org/wiki/Applied_behavior_analysis

In a simplistic introduction, ABA is therapy designed to give whomever (such as kids on the autism spectrum) a framework to function. For example, getting up and out the door to school is a large set of activities such as turn off alarm, get dressed, bathroom activities, eat breakfast, grab your backpack, walk to the bus stop. Each one of these activities can be broken into steps, sub steps and micro steps. For example, to brush your teeth, take cap off of the toothpaste, grab your cup, fill cup halfway with water, grab the toothbrush, dip into the water, squeeze out the toothpaste, brush teeth, rinse with the cup of water, and a dozen other micro steps.

Kids on the spectrum (hell some adults I know) are just overwhelmed at the task of brushing teeth. But break it down into manageable steps, follow the steps each time, rinse lather repeat as long as necessary (and it require hundreds of repetitions to master) until the micro steps become one manageable and sustainable step. Do this for each step until one can master/handle getting up and off to school in the morning. Do this for all the life and schools skills required.

It is very intensive 1:1 therapy. Otherwise, you might just as well institutionalize these kids and forget them. Thus far, ABA a repeatable method that drives progress. No guarantee that the child will become high functioning but again the alternative is probably institutionalization.

Giving a bump in case other’s find this interesting.