Autism Blog

For a lovely moment in autism, take a look at this video featuring nine-year-old David Militello. David is a contender on "America's Got Talent" - and he's autistic. This beautiful little video will touch your heart.

July Fourth is one of those lose-lose holidays for folks on the autism spectrum. If the noise doesn't make you nuts, the crowds will. If the crowds don't bother you, the gluten-and-dairy-filled desserts are likely to do you in. Meanwhile, it's almost impossible to avoid SOME celebration of our national holiday: even if you're safely tucked in bed, you'll wind up having to cope with the noise of "rockets' red glare!"

If you're a family about to cope with July Fourth on the autism spectrum, you'll want to explore Terri Mauro's fabulous collection of resources, ranging from ideas for managing noise to recipes for gluten free cookies! In fact, if you're a parent raising a child with autism, you can't do better than to explore Terri's entire Special Needs Parenting site here at About.com.

By the way - our own "secret" to managing fireworks: buy a pair of the earphones used by jackhammer operators. They do a great job of muffling the sound, and they're terrific in the dentist's office too (the sound of the dentist's toothbrush can make my son nuts!).

SIMmersion is a high tech corporation which creates interactive software to train all sorts of people for all kinds of difficult social situations. Their virtual people help to train FBI agents, military personnel, medical professionals and others to manage tricky conversations. Now, they've developed a new "person" to help people with autism build their social skills:

SIMmersion is developing a simulated character to help individuals with Autism Spectrum Disorder practice conversation skills in the hopes of improving employability and quality of life. Adults and adolescents can practice identifying and responding to complex social cues such as tone of voice, body language, and idioms when they speak to Sam Martin™.

I took a look at their demo (linked from their front page), and I was very impressed. This is some high end technology - and it looks like it's versatile and believable. I'm told that the technology may run into problems when a user slurs his speech or uses unusual language - but of course I haven't had a chance to find out whether that's really the case.

I have to wonder, though: why the technology? A decent human actor should be better equipped than any software to present a wide range of responses to challenge and build social skills. And, since human interaction is qualitatively different from interacting with a machine, it seems to me to make sense for folks with autism to practice with the real thing. Folks with autism may find a real person more anxiety-provoking than a computer. But successfully coping with that anxiety is key to making successful human connections.

This particular program is just the latest in a string of new applications intended to build social skills through artificial intelligence. If you have a moment, why don't you take a look at the SIMmersion demo and let us know what you think. Is this tool a great idea? Or just an expensive gimmick?

Many parents, teachers and adults with autism are concerned about the direction that autism research is taking. If you're able to take time out of a workday to either attend meetings of the Interagency Autism Coordinating Committee (IACC) or send the committee an email with your thoughts, these two events may be a golden opportunity to let your voice be heard.

There will be a meeting of the Strategic Plan Workgroup of the Interagency Autism Coordinating Committee (IACC) under the Combating Autism Act of 2006 (P.L. 109-416) taking place on July 8th, 2008 from 10:00 a.m. to 1:00 p.m. EST. The meeting will review and comment on the draft IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research. The meeting will be an online conference call with web-based presentation. Audio of this workgroup meeting will be accessible to the public via a teleconference phone link, and web-based access to information will be displayed at the meeting via computer/projector. To access the meeting, please visit the following web address: https://www1.gotomeeting.com/register/250792981

The call-in phone number is: (888) 455-2920. The pass-code necessary to access the meeting is 3857872. The contact person for this meeting is:

Azik Schwechter, Ph.D.
National Institute of Mental Health, NIH
6001 Executive Boulevard, Room 8203a, MSC 9657 Rockville, MD 20852
(301) 443-7613
schwechtera@mail.nih.gov

A meeting of the Interagency Autism Coordinating Committee [under the Combating Autism Act of 2006 (P.L. 109-416)] will take place on Tuesday, July 15, 2008 from 9:00 a.m. to 4:00 p.m. on the campus of the National Institutes of Health at the Natcher Conference Center, Rooms E1 and E2, 45 Center Drive, Bethesda, MD. The meeting will be open to the public, with attendance limited to space available. The registration website can be found at this website.

Will you attend, listen in, or send email? What will you say to the IACC?

Yesterday, I received this email from a reader:

I was hoping you could help me....We have a couple that we have grown extremely close to over the past few years. They have 2 little girls, age 5 and 7, with autism. My husband and I yearn to support them and I am having trouble finding information on how to do so (we do not want to "pity" them but encourage them). We try and praise them and let them know how much we respect how strong they are and want to help them. They are definately still grieving, as you put it, and we want to help and support them as best we can. I am just having trouble finding resourcess on how to best do that. Any help would be appreciated.

My three best suggestions were pretty simple:

• Plenty of positive reinforcement is great: if you see a positive change in a child, be sure to let her parents know right away!
• A non-judgemental listening ear is critical. In fact, by providing another place to vent, describe, discuss and debrief, you may be the one who helps to save a marriage!
• Babysitting is probably the best gift you can give a couple with children on the autism spectrum. Time away and time together for a couple with two autistic children is absolutely precious.

What's missing on this list? How can this couple best help and support their friends?

Hey, look at this picture! The father and daughter appear to be sitting in the front (bulkhead) seats of the airplane, and the little girl is snugly tucked in with a blanket; she's holding several comfort objects; and there's even a drink of juice available. No wonder she's not having a screaming tantrum. Last time I flew, there were no regulations against a passenger having any of these items available pre-takeoff - and they've certainly made all the difference for us when we've flown with our autistic and typical kiddos.

We have been pretty lucky, though: our kids' biggest issues with flying include painful ears on descent and a troubling tendency to dash past the security personnel... but so far, no one's mistaken them for terrorists...

If a tight blanket, familiar objects and treats aren't enough to help your child manage an airplane flight, parents have come up with a number of techniques for travel - some of which don't involve flight at all. Here are some offered in the comments responding to yesterday's blog:

I’d never take my child with autism on a plane flight, in such a confined setting and expect him to understand or follow the rules. We drive.

I have to admit that I was wondering why they didn’t take along a car seat. An FAA approved 5-point harness would have kept most kids securely in their seat, and it would be comforting for the child to be in the same seat they normally use in the car.

What should have happened? Mom should have taken the things she needed for her son out of her bag, told the flight attendant not to touch her son or speak to her son, and then she should have restrained him while she tightened the belt.

I considered purchasing two CARES Kids Fly Safe harnesses until I realized then I would just have to rent two car seats for the rental car anyway. Looking for a cheaper way to get these harnesses, I discovered that several e-bay businesses rent them out by the trip. Really, if you use it 3 times it would be cheaper to buy than rent. ...I cannot imagine taking them on the plane without some type of 5 point harness because they would try to run around and climb over seats throughout the flight.

What works best for you when you travel with your child or children with autism? I hope to turn your hints and tips into a full "top ten" article for this site!

A mom and her autistic child were thrown off a plane. Various versions of this story seem to agree that this particular situation was a sort of "perfect storm" of bad management, poor decision making, lousy communication, and an extremely unhappy child.

Yesterday, the story was blogged on the Chicago Tribune's website, and drew significant attention:

I don't think there's any question the two-and a half-year-old was "pitching a raging fit" as American officials have said, according to this story by television reporter Ed Crump of WTVD-Ch. 11, the ABC affiliate in Raleigh-Durham.

But the mother, Janice Farrell, told Crump that the flight attendant made matters worse.

"She kept coming over and tugging his seatbelt to make it tighter, 'This has to stay tight.' And then he was wiggling around and trying to get out of his seatbelt. And she kept coming over and reprimanding him and yelling at him," Farrell said.

One of the pilots came back to the cabin with a stern warning and Farrell says the frustration level escalated...."He just melted down. He saw me getting upset. He was upset. He was on the floor rolling around," she said.

The Tribune writer finishes by pointing to this incident as an object lesson in how the public should better understand autism because, in essence, autistic people are here to stay:

This case, which comes on the heels of two other high profile examples--a severely autistic Minnesota boy who was banned from church and the autistic kindergartener in Florida who was voted out of class--shows we have a long, long way to go.

I disagree.

The flight attendant clearly should have asked some questions, offered some alternatives, and "managed" her passengers better. She should have done that whether the passenger was an adult or a child, anxious or angry, or just in need of a little extra TLC.

The mom should have done a better job of communicating her specific needs to the flight attendant. Perhaps she could have selected some items from her son's bag prior to liftoff - so that the bag could have been safely stowed AND the boy could have had his calming objects.

The pilot should have been able to manage the situation better, perhaps asking a different flight attendant to attend to this child, or recommending what should be standard techniques for handling a difficult or upset passenger.

But in the long run, if a child is clearly unable to sit in his seat and is so upset and overwhelmed that he's rolling in the aisles of an airplane that's about to take off - would you want to be the family waiting on the ground while his mother and the airline staff attempt to calm him to the point where he can safely be buckled into his seat (knowing that the same issues might arise again and again over the course of the trip)?

What if you, too, had a child with autism who was just barely managing to hold it together, and you were seated a few rows behind the Farrells?

In my opinion, this is a story about poor airline service (and there have been plenty). It's also a decision about some bad decisions made by people who really should have known better.

But a major news story? No. A story with a moral about the growing prevalence of autism? Again, I think not. It's not just kids with autism who have a tough time in airplanes - and over-reaction to human emotion in airplanes and airports has led to serious problems (and in one case even death) in this "post 9/11 era."

Soccer is a sport that involves split-second timing, total focus, and a strong understanding of team interaction. Baseball requires impressive hand-eye coordination and an ability to stay on task despite boredom, bug bites and other distractions. Boy and Girl Scout troops emphasize group activities with limited adult involvement - and often require kids to take part in tricky fine motor projects (knot tying, crafts, etc.) that are challenging even for typical children.

The vast majority of young children - autistic or typically developing - are not ready for soccer, baseball, Scouting, tumbling or dance. Yet here in America we seem to feel that every child should be enrolled in structured team sports and clubs by the time he's three, four, or five. And, for reasons that elude me, we seem to have decided that simple, fun activities like running, jumping, hiking and fishing are for teens and adults only.

For kids with autism, this odd cultural preference can be a set-up for frustration and failure. Parents see that almost every typical child in the neighborhood is involved with soccer or baseball or the like. And so they work hard to ensure their child's inclusion in an activity that may not be a great match for their child's interests or abilities.

Over the years, we too have tried to involve our son first in gymboree and tumbling, then in soccer, baseball and various kid clubs. In general, these experiences were terribly frustrating - for us, for Tom, and for the adults involved in coaching and teaching.

What we've found, however, is that Tom is really much more interested in hiking, exploring, art and music. By following his interests, we've been increasingly successful in inclusion.

For example, Tom is much more interested than his sister in listening for and identifying birds. He has more stamina for long walks in the woods. He's actually interested in viewing art in museums and listening to classical music. So ... we've started taking Tom on family birding expeditions (offered here by local clubs). We've taken him to art museum programs for children (gallery walks work better than hands-on programs). We've taken Tom to family concerts and, now, to typical concerts (it's taken time, but now he can enjoy a longer presentation). Bowling has worked out well for us, too - and Tom is now part of a junior league that stresses individual achievement.

It's not typical boy stuff. It's not even typical kid stuff. But the activities in which Tom's now included have the potential to be lifelong interests that build on his strengths.

What do you think of this approach to inclusion? Do you feel it's a better idea to ensure a child's inclusion in typical activities? Or to follow the child's lead for inclusion? What's worked for you?

Give away autism products you no longer need to family that needs them. Get products you're looking for from another family that been there and done that. What a great, simple idea - especially considering the fact that the simplest products, when the word "autism" is printed on them, can become multi-hundred-dollar investments!

Randy Abrams has put the idea to work at the AutismFreeZone. In addition to a Craigslist-like product exchange environment, he's also created separate spaces where resource groups, therapists, and business owners can advertise, offer discounts, and generally make themselves known.

The key to making this site a success is participation. I've got a pile of autism books I've read and no longer need - not to mention some DVD's, a pack of "inference" cards, and several sensory toys. Keep your eyes on the AutismFreeZone if you're interested!

Yesterday, my dad - who has Parkinsons and a gimpy hip - got out on the golf course and blew away the pro with fifteen perfect drives in a row.

Until yesterday, neither Dad (nor anyone else in his circle of friends, therapists or doctors) thought he'd ever get back out on the golf course at all. I figured "what the heck - I'll sign him up for a lesson. If it doesn't work out, he's no worse off than he was before."

Who knew his game would be better than ever before, due to improved focus and less concern about powering the ball?

Reflecting on the success of the day, I realized that Dad's experience of lowered expectations (why bother? you'll fail anyway. just keep doing the things you're comfortable with!) had slowed his rehabilitative progress to a crawl. And I realized that it was precisely this issue that pushed us to finally take our 11 year old son with PDD-NOS out of school and try homeschooling.

On a regular basis, when Tom was four, five, and six years old I'd ask his teachers, therapists and aides how he did. Their answers were intended to reassure me: "He did great!" Then would come the zinger (at least from my point of view): "He knows all his numbers and letters!"

Tom knew all his colors, numbers, letters and shapes by the time he was three. Like many children with autism, he was a champion sorter and categorizer. The fact that he could recite them now that he was five or six was hardly an achievement. But somehow, his teachers thought I'd be pleased by their report.

Later, as he was supposed to be building social conversational skills, taking part in complex games at recess, and developing age-appropriate academic skills, we'd hear "He did a good job sharing!"

I'd ask about his academics, his relationships, his anxiety level - and his school "team" would be quick to reassure me that I shouldn't worry too much; that he was doing "great." Administrators wondered why I was worried about academics, and couldn't quite fathom my concern with the fact that a literate ten year old had never been asked to read a book for school.

Of course, even though we're homeschooling him, Tom is still autistic. He still has significant speech issues and a hard time socializing with his peers. But this year we read aloud together - and made our way through eight or nine major novels (Charlotte's Web, Charlie and the Chocolate Factory, and the like). Tommy played clarinet in an advanced jazz band. He learned to do rock climbing, won a bowling trophy, and blew through basic multiplication. As of this spring, Tom has two new favorite expressions: "Of course!" and "I'll give it a try."

Who knew what Tom could do until we asked him to do it?

Who knows what any child can do until they're challenged to try?

Have you been frustrated by the low expectations placed on our kids with autism? How have you helped your child succeed beyond others' dreams?