Tuesday, June 27, 2006

How to Plan a Community Outing with Your Autistic Child

It can feel like pulling off a successful community outing for a child with an autism spectrum disorder takes the knowledge of an autism expert and the skills of an experienced teacher of such children -- plus the logistical know-how of a presidential candidate's advance team. Here are some tips to make the trip less daunting.

1. Know your kid.
Understand what motivates him. If he's young, does he love music and kids shows like Sesame Street? A touring musical stage show featuring Elmo and the gang could be worth a try. What kinds of activities, food, attractions, people does he prefer? Does he like the beach? Those "moon walk" bubbles? What gets him excited? (What gets him too excited?) What stresses him out? What does he need to feel comfortable? Who should be with him? (A sibling can be a comfort, but if grandma would be embarrassed seeing a loud tantrum in public, maybe she's not a good choice.)

2. Scout out the scene. What do you know about the venue? If it's at a local park, church, library, store, school or mall, it's easy to walk around and imagine what it will be like. If the outing is an event at a place unfamiliar to your child, what can you learn about the event? Is it likely to be crowded? Noisy or not, both in terms of audio and visuals? (Some stimulation can be good, but too much can be bad). If it's an arena or theater performance, is there a seating chart? Can you get reserved seats not at the front, but still close enough to see what's going on? Is there a place to walk around if the main event is proves too much to take? Where's the bathroom? How long is the walk from the exit to your transportation? When does it get crowded, and can you go to a venue at an off-peak time, where there are not so many people, like the first movie of the morning, or the last hour the gym is open?

3. Assess what your child could gain from attending. Maybe it's a chance to learn something new, or experience something with his family. Maybe it's to hear music she enjoys. Maybe it's to see his brother do something special. Whatever it is, there must be a real benefit for this child, that, I would argue, goes beyond sharing in family time. If it's a family event, make sure there's some experience with other family members that takes up part of the event that is just for him. It could be a game, or reading a book with him, or just playing together. If you don't know what is in this event for your child after analyzing the situation, you don't have to go. (If you feel like you do have to go, then bring along activities just for the child.)

4. Prepare the kid. Not everyone likes a surprise, and it can help to give a preview of what's coming up to your child with ASD. You can try writing a story (sometimes called a social story, there are lots of links if you search on Google) telling him what to expect. Social stories are especially useful for going to places like the doctor, dentist, a family dinner or school at the start of a new program.

With other activities, the child's reaction to the preview also can be a tip off to you about the activity's attraction. Example: the child likes Curious George books and loves the movie trailer on the web. This prompts his interest in going to see the movie, in spite of his dislike of crowds. It's a key factor in a successful outing. But when he's shown the movie trailer for Cars, he's clearly not as interested. So he doesn't go to see it. There are better things to do.

5. Celebrate small, partial victories. Even when doing all this advance prep work, it's unlikely that any event will be a purely wonderful experience. It's vital to appreciate the moments that do work, where your child loves a certain part of the experience -- one ride at the carnival, one song at the concert, one segment of the religious class, one treat at the birthday party. That moment where he's fully engaged in experiencing something, rather than shutting himself off from that potential enjoyment, can be thrilling to see.

6. Have an exit strategy. If things don't go well, and there will be times they won't, it's good to have one-on-one coverage -- mom or dad, for example -- to play defense. That way, you can try to persevere through a period when your child is uncomfortable, or stuck on something he sees but can't access (like a "moon walk" at the fair before it's open to kids). Use the tricks you use at home to calm and comfort your child, get him to focus on you and your voice and your words. The idea is to get him to avoid non-compliant behavior that will, in the end, prevent him from having any fun.

If that effort fails, and it sometimes will, hit the eject button and bail. You can try to persevere next time. (I know parents with more than one child who have brought two cars to an event as a contingency plan in case things don't work out. That way, one parent can stay at an event with the typically developing child, so she doesn't miss out.)

7. Don't give up. It's essential to keep trying, even after a failure. If one kind of event doesn't work, learn from what happened. What were the conditions there? Was the mall too crowded, noisy? When does it open, and is it quieter then? Did we give a good preview of what to expect? Did the child expect something else? Did we expect something else? Are the child's preferences changing? It could even have been a bad day. We all have them.

The point is to look for opportunities to have great ones. Try again.

Tuesday, June 20, 2006

Thinking About The Big Picture, The Long Term

There's a lot of media coverage nowadays focusing on parents of young children recently diagnosed with autism spectrum disorders, and it's justified given the rise in diagnoses, and the subsequent puzzling out of what services work for the given child's circumstances. This blog will pay attention to those kinds of questions (note the guide on the right from behavior.org about choosing ABA providers, under "Reports and Books," for example). But while parents will always be focused on the immediate needs of their kids, assessing what services they require and whether they are making progress, it's also vital to think about the medium term and long term.

This report from the Government Accountability Office, about a conference to study how California helps disabled youths transition to work and postsecondary education is intended to help policy makers in Washington understand the gaps in services required by law that exist in a big state witha diverse population. (The report mentions autism only once, in passing, as one of the disabilities covered by the Individuals with Disabilities Education Improvement Act (IDEA).) The report gives a basic grounding in what is supposed to happen and what really does happen in federal efforts to help disabled teens -- a $10.5 billion investment for 6.8 million youths in 2005. The take-aways include:
  • School districts pressured to include disabled kids in assessment tests reduce vocational and life skills training time to focus on test-related materials.
  • Youths are not participating in the development of their individualized education plans (IEPs), which offer a chance to learn self-advocacy skills.
  • School districts often don't reach out to government agencies or community-based groups which could help them take advantage of vocational training and other services for disabled youths.
  • The low-income eligibility requirements for students to receive government income assistance such as Social Security can lead to gaps in services for some students.
In other words, if California is a good case study like the GAO asserts, the big puzzle for getting access to the right services to help older children with autism spectrum disorders (or other disabilities) is a quite a bit like the early childhood days: parents and their kids have to navigate what services are available and where, the best fit, and the search has to extend beyond the school district.

It's important to note that there are some promising programs, according to the GAO (see page 15 of the report). Several vocational programs, including the Marriott Foundation Bridges program that has provided training for young people with disabilities in six urban areas around the country since 1990, and even helps provide trainees with adaptive technologies to help them do productive work. Other programs cited here were much smaller, California-based, but also promising.

Tuesday, June 13, 2006

The Power of Team Sports for Autistic Kids

This recent Washington Post story, "The Power of Play" shows the potential for team sports -- in this case, ice hockey -- to be a valuable and enjoyable way for kids on the autism spectrum to get physical exercise, learn something new and establish relationships with peers. Or, as 9-year-old Robby Callihan puts it, the chance to skate at the home arena of the Washington Capitals is nice, but the best part about participating on a youth hockey team "is playing with my friends."

The Post story explains that the NOVA Cool Cats, a youth hockey team based in the Washington, D.C., area, is one of 30 teams for people with developmental disabilities across the U.S. The Cool Cats has 30 members, and each has a parent or sibling or other person to help them on the ice.

The story doesn't delve into how much training these support people and parents get to help the kids play. But a branch of the national youth program USA Hockey has a division called the American Special Hockey Association that provides information about starting such programs and appears to offer some training assistance.

The Special Olympics provides more information about getting people with developmental disabilities involved in athletics. I am interested in learning about other team sport applications, too. Imagine creating a preferred activity for an autistic child that has social benefits and physical fitness attached to it. If you know of activities or programs for soccer, basketball or other sports, please let me know by posting a comment or e-mailing me. I will publish another post with more information when I get it.

Monday, June 05, 2006

The Pressures Parents Face

The first section of the piece "Autism's Parent Trap," in today's New York Times is tough to take, but it's worth reading to the end. Because while the writer, Cammie McGovern, speculates about what drove parents in a trio of recent tragedies to murder their autistic children -- does she really know? -- she makes some important observations about the pressures parents face.

McGovern, a novelist who is the mother of three kids including a 10-year-old boy on the autism spectrum, argues that it's parents' unrealistic expectations that they, if they empty their hearts, souls and wallets, can find a cure for their child's disorder. She says, in so many words, forget it. Forget the tales you have read in books like "Let me Hear Your Voice," by Catherine Maurice, that talk about autism cures. Instead, McGovern says: "I've never met a recovered child outside the pages of those old books. Not that it doesn't happen; I'm sure it does. But it's extraordinarily rare and it doesn't happen the way we once were led to believe."

She goes on to write: "Every parent of a child on the autism spectrum knows this feeling: I've done everything possible; why isn't he better? The answer is simple: Because this is the way autism works. There are roadblocks in the brain, mysterious and unmovable. In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic children feeling like failures."

Parents should understand that their kids can get better, she writes. Just don't expect a cure. "Being more realistic from the start might make it possible to enjoy the journey and to see it for what it is: helping a child who will always function differently to communicate better and feel less frustrated."

There are two reasons McGovern's essay is in the newspaper. Aside from citing an apparent pattern in recent news headlines (a trio of tragedies in which authorities allege parents in Illinois, Oregon and Hull, England, killed their autistic children), McGovern has a novel "Eye Contact" coming out this month, which she explains on her website is a story inspired by her parenting experience. In the book, a main character is a barely-verbal autistic child who witnesses a crime. His protagonist mother's quest to "unlock" what he knows is at the center of the plot.

Sunday, June 04, 2006

A Researcher's Dose of Reality for Parents of Autistic Kids

In a Q&A in the May 24 San Diego Union Tribune, psychologist and autism researcher Laura Schreibman notes that there's been an explosion of media coverage and Internet-based information about autism spectrum disorders. "More people are aware," she says, adding "There's been a tremendous emphasis in government and other agencies to promote research. Organizations, primarily parent-started, are flourishing and providing their own funding for science."

Science is where Schreibman lives as a psychology professor at the University of California at San Diego and leader of the school's autism research program. The explosion of information inspired her to publish a new book recently called The Science and Fiction of Autism (Harvard University Press, 2005). In the book, according to her interview and its online description, she seeks to bust the hype about autism "cures" and other controversies, including allegations that vaccinations cause the disorder.

In the newspaper interview, Schreibman was asked what advice she has for parents of children diagnosed with autism. Her answer:

"Be careful about what you read and hear. There's so much information out there, particularly on the Internet. You need to stick with reputable, specific sites, like the Autism Society of America. Parents get inundated with stories, tales of what vaccines or vitamins do or don't do. They need to be realistic. There is no cure, but there are behavioral treatments that have been shown to be effective in improving the condition.

"When parents talk to people, when they're evaluating services, it doesn't matter so much what helped another child. They need to ask, 'What is the scientific basis for the validity of this treatment?' If something sounds too good to be true, I'm sure it is. If somebody promises too much, grab your wallet and run.

"Once in treatment, keep monitoring. If you're not seeing any change, ask questions. Be watchful and critical. Nobody should be afraid to say this treatment isn't working. Autism isn't a disorder where parents can sit back and hope things will just get better or that the professionals will do it by themselves."

If Schreibman sounds blunt, I took it that she meant it that way. She does also note that she's hopeful that researchers can determine the basis or causes of the many subgroups on the autism spectrum. "I am optimistic that some day, but not in the near future, we'll untangle this mess," she adds. "But any cure is way, way off."