Safety Tips for Children with Autism

The latest newsletter from the Federation for Children with Special Needs, a Boston-based non-profit organization that provides support and information for parents of disabled kids, has an article with safety tips to help parents of children on the autism spectrum. (See page 14 for the article written by Karen Douglass, mother of a five-year-old boy with autism.)

The tips complement this two-page handout produced by Dennis Debbaudt, a Florida parent who has become an advocate and safety expert for people with autism and runs Autism Risk & Safety Management, which produces training videos for public safety agencies and educators. Debbault's materials are written with both children and adults in mind.

The tips range from simple steps to those that require some shoe leather and homework. As with any contingency planning exercise, some of the steps are sobering. They include:

Program an "ICE" telephone number into your mobile phone contact list. ICE stands for "in case of emergency" who should be called. This is a good idea for everyone, but as Douglass points out, it's vital in an emergency if you become incapacitated while with your autistic child.

Childproof your routes of exit. Families with young children on the autism spectrum should consider putting door latches out of reach. Douglass notes that her family also installed an alarm system that sounds if a door is opened, so her son won't leave the house unnoticed.

Prepare an information sheet about your child to share with public safety officials. Debbaudt's handout has a suggested list of details to include that go beyond name, physical description and photograph: all telephone numbers for parents and caregivers; atypical behaviors the child may do that will attract attention; favorite locations to visit; likes and dislikes when it comes to approaching the person; and method of communication, both verbal and non-verbal. Debbaudt also recommends preparing a map of dangerous locations near your home, including bodies of water.

Get to know the local police and fire department. If your child's wandering off is a concern, Debbaudt recommends contacting police, fire and ambulance services with this information, so they can flag it in their emergency response database. "When we provide law enforcement with key information before an incident occurs," he writes, "we can expect better responses." Visit the police and fire stations and emergency medical technician (EMT) station.

The advice extends to traffic safety. Douglass' town agreed to install signs at both ends of her street, alerting motorists to the fact that a special needs child lives in the neighborhood. She advocates that other parents do the same in their communities.

Get to know your neighbors. It's important for parents to do their best to educate neighbors and friends about their children. "If the neighbors know about the child's special needs, they are much more likely to act quickly if they see a child outside alone or in unsafe situations," Douglass says.

Fathers Can Help Improve Communication Skills of Kids with Autism

Researchers at the University of Florida say that training fathers to help their children with autism communicate can benefit the kids' verbal skills, and help dads feel more involved in their children's lives.

This television news report from Gainesville, Fla., focuses on the story of a father who helps his autistic son do writing and drawing exercises at home, and explains how the father has learned to be much more patient in his dealings with his son after he received training to help his son communicate. (In the video, you can hear the words of the father, but not his 11-year-old son who was diagnosed at age 3.) "These boys teach you patience, that is for sure," the father, Chuck McCormack says.

Jennifer Elder, Chair of Department of Healthcare at the University of Florida in College of Nursing in Gainesville, is one of the researchers of this issue, and she has trained Chuck and other fathers to work with their kids. She says that for fathers, "there is a tendency to really direct the children, but what we found is that doesn't work very well in autism. It's much better to follow the child's lead."

The news report cites the research of Elder and her colleagues who have found "teaching fathers how to talk to and play with their autistic children in a home setting improved communication, increased the number of intelligible words the youngsters spoke by more then 50 percent, and helped dads get more involved in the care," thus empowering fathers who are often less involved in caring for their kids with autism.

This link takes you to an abstract of the study entitled, "Verbal communication outcomes in children with autism after in-home father training," research which Elder and her colleagues published in February in Journal of Intellectual Disability Research.

Temple Grandin's Voice

Temple Grandin, the best-selling author and animal expert who has autism, broadcast an essay this week as part of National Public Radio's "This I Believe" series of personal statements that guide peoples' lives. Listen to Grandin's essay, "Seeing in Beautiful, Precise Pictures," by clicking here.

If you are just learning about Grandin, you are likely to find her message positive and hopeful (even as her voice sounds a bit flat in her delivery). She explains that she assembles thoughts using sensory impressions -- sights, sounds and feelings from her memory -- rather than abstract concepts like most people. "I believe that doing practical things can make the world a better place," she announces. "And one of the features of being autistic is that I'm good at synthesizing lots of information and creating systems out of it."

In this long conversation Grandin had in 2005 with Terry Gross of NPR's "Fresh Air," the story gets more interesting. Yes, she has a high-functioning spot on the autism spectrum, but she's overcome a number of challenges our children face: emotional estrangement, educational hurdles, anxiety, discomfort with unfamiliar situations and sensations. She's been taking anti-depressants for two decades, and attributes her successful life and career to the calming effects of the medication.

By inviting Grandin to speak about her views on life, NPR puts her in the position of speaking for an entire population of people with autism. That might seem unfair, but it's a position she has cultivated in her books, including Animals in Translation and Thinking in Pictures. And Grandin's "This I Believe" piece and her interview with Terry Gross make her sound like an inspiring figure. She told Gross:

"Another thing about being autistic, there's no magic turning point. It's a gradual emergence. You just keep learning more and more and more. It's like you never really grow up. I didn't feel like I was a really grown up adult until I was 45."

On Working With a Special Education Lawyer

Charles Fox, a Chicago attorney who writes the Special Education Law Blog, has just posted a useful set of guidelines for parents who want to work effectively with a lawyer. Fox, who has a child with special needs, bases his "Guidelines for Working with a Special Education Attorney" on his experience working with parents. It covers practical matters like billing practices (driving to your house is on the clock) and setting clear and reasonable goals.

Some tips include: Ditch the shoe box full of papers in favor of organized files of past IEPs and other documents, presented in order of importance. Focus on results -- the best outcome for your child's education program -- when discussing strategy with your lawyer. And keep your emotions in check; don't let animosity against any individual school system represenatitive cloud your judgement.

Study: Boys with Autism Have Fewer Neurons in Brain's Amygdala

The red spots in the image at left shows the location of the amygdala in the temporal lobes of the human brain. Researchers at the M.I.N.D. Institute at the University of California, Davis, have found this part of the brain, which involves a person's emotion and memory, has fewer neurons in males with autism. The researchers say in this press release that it is the first time scientists have identified such a difference between the brains of people with autism and those without. More research is needed to figure out more about what this means about the ways that brains develop in people with autism.

The research was funded by the federal government through the National Institute of Mental Health and the National Alliance for Autism Research, which is now part of the Autism Speaks advocacy group.

Research in brain development is a major theme in autism-related medical studies. This quote helps explain the context of this study:

"While we have known that autism is a developmental brain disorder, where, how and when the autistic brain develops abnormally has been a mystery,"” said Thomas R. Insel, a physician and director of the National Institute of Mental Health . "“This new finding is important because it demonstrates that the structure of the amygdala is abnormal in autism. Along with other findings on the abnormal function of the amygdala, research is beginning to narrow the search for the brain basis of autism."

The study, by David Amaral of the M.I.N.D. Institute and Cynthia Mills Schumann, who's now at University of California at San Diego, is in the July 19 issue of the Journal of Neuroscience.

The image comes from the Wellcome Department of Imaging Neuroscience, posted on the web encyclopedia Wikipedia.

A Primer on The U.S. Government's Autism Activities

The Government Accountability Office has just come out with a report that provides a good overview of the federal government's activities over the past six years for people with autism spectrum disorders. You can find the 50-page report online here.

The report with the not-so-enticing title ("Federal Autism Activities: Funding for Research Has Increased, but Agencies Need to Resolve Surveillance Challenges") focuses on activities at the National Institutes of Health, which sponsors research, and the Centers for Disease Control and Prevention, which studies how widespread autism spectrum disorders are. The report outlines the government's work to identify the scope of the autism problem, to understand its causes and identify treatments and existing programs to help people with the disorder.

This report, sought by Senate Majority Leader Bill Frist, would be a good study to read if you plan to write Congress or President Bush about the Combating Autism Act now pending in the House. (For background on that issue, see this post.) Selected highlights include:

• Information about spending on autism research. Starting from a very small base, the National Institutes of Health has increased funding, from $51.5 million in 2000 to $101.6 million in 2005.

• Where federal research money goes. In addition to government agency research efforts at the National Institute of Environmental Health Sciences, and the National Institute of Mental health, the report identifies 9 centers of research excellence at academic institutions around the country (see page 9), and eight more academic institutions where research on treatment takes place (see page 10). Other efforts include scientific inquiries into genetic causes for autism.

• Why the U.S. has had trouble organizing autism-related efforts so far. The reason is that, according to the GAO, "no federal agency perceives itself as having lead responsibility for addressing the service needs of adults with autism or services for children beyond education." And while there's a group called the Interagency Autism Coordinating Committee set up to quarterback the government's autism efforts, it lacks the clout to set clear direction for the nation and states, the GAO points out. (See page 4.)

• Why the CDC has lost momentum in tracking the growing U.S. autism population. The reason, according to lawyers for the CDC, is that new federal privacy laws require parents to sign consent forms if they want to share private medical data about their kids' diagnoses. Because the government bureaucrats don't want to go through the effort to ask parents to consent, not all the information about kids with autism diagnoses is getting to the government researchers counting this population. The GAO scolds the agency and the Department of Education for not solving this problem.

There are other facts and stats in there that you will find important. If you care about what the government is doing, or not doing, to help Americans with autism, at least take a look at the highlights page and the table of contents.

On to the House for the "Combating Autism Act"

Thursday night, Aug. 3, the Senate passed by unanimous consent the Combating Autism Act, Senate Bill No. 843. Now it's on to the House of Representatives. The coalition of advocacy groups that has been working to win approval for the bill has a website, CombatAutism.org, that urges supporters to contact their representatives to support the House version of the bill, H.R. 2421. You can visit CombatAutism.org to see if your Congress member is one of 141 co-sponsors of the bill. If not, you can contact him or her to urge their support. The website says the next 30 days are critical to winning support in the House -- no doubt because the November elections loom just 90 days away from now.

If you don't have time to read the 31-page Senate bill, here is a recap of its five-year, $900 million agenda.

The House version, H.R. 2421, is (so far) shorter in terms of the money it would devote to autism screening, research and treatment. It calls for spending $570 million over 5 years, in the latest version available on the Congressional website, Thomas.gov. So if an autism bill does make it through the House, it will be important to see whether it moves any closer to the Senate version.

The House bill would set up an "Autism Coordinating Committee" in the federal government, with officials from the Department of Health and Human Services, Centers for Disease Control and Prevention. The bill says others should be included -- such as a Department of Education expert, and families and others who deliver services to people with autism, as well as people on the autism spectrum -- but leaves such decisions up to the secretary of health and human services. This committee would coordinate autism research efforts.

Some important similarities are in both the House and Senate bills. The House version also calls for monitoring autism screening of children, and for funding research and treatment of people with autism spectrum disorders. On treatment, the House bill calls for providing "comprehensive medical care for individuals with autism through evidence-based practices, with specific attention to medical conditions that may be associated with autism, and to disseminate information on the medical care of individuals with autism to health professionals and the general public." It also says the government will award a grant "to a national organization that will establish and support regional centers of clinical excellence to provide medical care to individuals with autism and promote research aimed at improving the treatment of such individuals, and that will build a shared national medical database to record the results of treatments and studies at the regional centers."

One last thing. According to a statement from Cure Autism Now, one of several advocacy groups lobbying for passage of this legislation, the Combat Autism Act -- if it passes -- would be one of only a handful of single-disease laws. The group says the most notable one in recent times was the 1990 Ryan White CARE Act for HIV/AIDS.

Adaptive Sports for Kids with Autism

The New York Times published an article today, "A Can-Do Approach to Autistic Children and Athletics," that parents should read. Embedded in the story's research are some encouraging anecdotes and important health notes for kids who have autism spectrum disorders.

The main point of the article is this: "Autistic children, even those who are considered low functioning, can excel at activities like swimming, martial arts, running and surfing -- sports that don't entail having to read social cues or figure out when to pass the ball."

In the article Georgia Frey, an associate professor at Indiana University, points out that parents of kids with autism have a lot of battles to fight, "So when it comes to getting their kids involved in recreation and physical activity, it can seem too exhausting. But I do think that parents see the value in these programs, because the demand for them is very high."

There are important health reasons for that high demand, the article points out. All kids need exercise of course. But some kids with autism may need exercise more than typical ones, for its fitness and therapeutic benefits. For one thing, rigorous exercise such as running and swimming (more than playing alone with a bouncing ball) can have a calming effect on children who might otherwise spend that time doing repetitive, stereotypical movements with their bodies. A second reason is that the high number of autistic children who take antipsychotic and other drugs are susceptible to side effects that include weight gain.

The Times story refers to a number of experts and adaptive sports programs around the country. Among them:

• Georgia Frey's adaptive physical education program at Indian University's School of Health, Physical Education and Recreation. The program, which offers movement, bicycling and other lessons based on individual child assessments, won recognition from its local chapter of the Autism Society of America in 2004.
• The Aqua Pros Swim School in San Diego, which runs a "pool pals" program for kids on the spectrum.
  
• The North East Westchester Special Recreation Program in Hawthorne, N.Y., which offers swimming, Special Olympics training in a number of sports, as well as social activities, and day-long and weekend outings. It is for both children and adults with developmental disabilities.

That such programs offer both physical fitness and social benefits to kids on the autism spectrum shows their value. Participating in them can be a source of self-esteem for the kids, pleasure and pride for parents. If you see examples of other programs, please drop me an e-mail.

"Combating Autism Act of 2005" Moves Ahead, Slowly

The Senate Health, Education and Labor Committee on July 19 passed the Senate version of the Combating Autism Act of 2005, a major bill which would set aside close to $900 million over the next five years to respond to the growing population of Americans with autism spectrum disorders. The act would:

• establish the National Institutes of Health director as the nation's "autism czar," accountable for coordinating research and developing an annual budget to present to Congress;
  
• expand federal research studies, including investigations into potential causes of autism, including environmental causes;
  
• provide for early autism screening for children across the country;
  
• fund efforts to identify the best medical treatments;
  
• continue public education programs.

Aside from the link to the bill itself, there's a wealth of information at advocacy organizations like Cure Autism Now, which set up a special website for citizens to rally for Congress to pass the bill. The site lists 18 national autism advocacy groups that have been working since November for its passage. Among the other groups sounding approval are Autism Speaks (here is the group's statement) and the Autism Society of America.

While the autism community is buzzing about the bill, there's a way to go yet. The Combating Autism Act must win passage in the full Senate and also in the House, which is where advocates are seeking more co-sponsors. As of today, the Senate bill has 42 co-sponsors, shy of a 51-vote majority; the House version has 142 co-sponsors. You can see a list of all the co-sponsors here. And of course, the House and Senate would have to hash out any differences in their respective bills, and then President Bush would have to sign it into law, all before the next Congress gets installed in January. (Has anyone seen or heard President Bush say anything about autism? The only recent reference I found to the president discussing autism is when he congratulates Jason "J-Mac" McElwain, a New York teen with autism, for a great high school basketball performance last March.)

There's one other rub in this political battle. As Bloggg, who writes often about autism, has pointed out, a number of advocacy groups withdrew their support for the Combating Autism Act after the Senate committee voted to approve it. The group Advocates for Children's Health Affected By Mercury Poisoning, also known as A-Champ, says it has withdrawn its support for the Senate bill because it doesn't address the group's specific concerns about researching whether vaccines containing mercury preservatives cause autism.

Hopefully A-Champ and others will find reason to rejoin the bandwagon. The legislation watchers at Autism Speaks sounded like they were trying to assuage the concerns about vaccines when they wrote about the bill's language setting up Centers of Excellence in Environmental Health. The Autism Speaks people then explain what they expect to happen when the Combating Autism Act reaches the Senate floor: "It is expected that language in the [Senate] committee report accompanying the bill, and statements made in the Congressional Record when the bill is considered on the Senate Floor, will convey congressional intent that vaccines and their preservatives should be considered such 'environmental factors.' "