A Tale of Two Autism Movies

Two documentary films shown as part of a screening and discussion panel at Brandeis University on Wednesday night serve as stark reminders of the sea change in public services – and public attitudes – toward people with autism in the past 50 years.

"Without Apology" is Susan Hamovitch's effort to tell the world about her family's deepest, darkest secret – her brother. Alan, who was born in 1950, had mental retardation and autism and was institutionalized in upstate New York when he was eight years old. Hamovitch's parents stopped talking about Alan for years -- sometimes telling people they had only one child, not two – though they did continue to visit him once a month until their deaths. Conditions at Letchworth Village were horrific, leading to a famously shocking expose by Geraldo Rivera in the early 1970s. But the searing truth of the movie was that Hamovitch's parents had no choice but the state-run facility when they realized they could no longer care for Alan in 1958. There were no alternatives for people with autism at the time. No early intervention. No treatment. No progress. No hope.

The film was hard to watch, even for panelist Dr. Margaret Bauman, esteemed pediatric neurologist and autism researcher. But Hamovitch, who came in from New York for the screening, wrapped up her comments on a high note, telling the audience of parents and professionals that things finally started to turn around for Alan after moving to a group home in the 1990s. (Letchworth finally closed in 1996.) Today Alan is 55 and has still never spoken a word. But he is about to begin a communication program with a speech and language pathologist for the first time in his life. And Susan Hamovitch is proud to say Alan is her brother.

The second film shown at Brandeis was much easier to watch; for some parents in the audience it was an inspiration. In "The View from Here: My Life with Autism," Taylor Crowe looks right at the camera and describes how he went from being a nonverbal 3-yr-old to a 25-year-old college student studying computer animation at a renowned California art school. He has a driver's license. He has friends. And he has a strong conviction that someday he will achieve his dream of having a successful job and living on his own.

When Crowe was diagnosed with autism a generation after Alan Hamovitch, his parents had many more options to choose from. With help from speech therapists, occupational therapists and other professionals, Crowe's family pushed him to develop the social and communication skills that most people take for granted. They never gave up. And neither did Taylor.

Viewing these films together is a celebration of the last half-century of progress in society's treatment of – and treatments for – people with autism. Of course history cannot account for all of the differences in the lives of Alan Hamovitch and Taylor Crowe; Hamovitch obviously has a more severe form of autism than Crowe. But there is no denying how far we have come since the 1950s in our ability and our willingness to help people with autism meet their potential – whatever it turns out to be.

Near the end of the evening, Dr. Bauman pointed out that much more is known about autism today than even when Taylor Crowe was a boy. While there remains a subset of children who make little progress regardless of treatment, Dr. Bauman noted that "a high number" of kids on the autism spectrum go on to college. "Our expectations for these kids -- out of the box -- are far higher than just 5 or 10 years ago," she said.

-- Written by Carol Gerwin

Welcome to Autism Bulletin

There is no shortage of information for parents of kids with autism spectrum disorders. The problem can be too much information. That's where Autism Bulletin comes in.

Autism Bulletin sifts through the avalanche to post meaningful news, information and resources to empower parents and families raising, educating and nurturing kids on the autism spectrum. Information about services, interesting events, items in the news.

Updates about legislation and important research. Items that help parents communicate about their kids with relatives, friends. Strategies for working with educators. Ideas for helping siblings. And reminders for parents to take time to care for themselves every now and then.

Parenting a child with autism is a demanding role, but it doesn't have to be a lonely one, as I was reminded tonight at an event at The New England Center for Children, a school in Massachusetts for children and adults with autism. There is information and resources and people out there to help if we know where to look. It also helps if we find the energy to advocate for expanding these resources for this growing autism population.

One last thing about Autism Bulletin: the assumption here is that parenting autism spectrum kids doesn't have to be a constant struggle. There are tough times, no doubt. They happen a lot, especially at the beginning. But there are good times, too. As Susan Senator, the author of "Making Peace With Autism," has written: "Throw away expectation and you may be pleasantly surprised."

So read on. Post a comment, e-mail me with a suggestion and tell me what you think.

A Toy Catalog for Kids with Disabilities

Toys R Us has teamed up with the National Lekotek Center, an organization that helps disabled children integrate into family and community activities, to create a "Toy Guide for Differently-Abled Kids." The 52-page catalog, available here, is above all about selling toys, but it does use criteria for each toy to say what kind of play or sensory experience it's designed to promote, such as spoken language, gross motor skills and social interaction. The catalog is available in Toys R Us stores starting this week.

Toys R Us has been doing this guide since 1994 with Lekotek, which evaluates toys to see if they are suitable for children with physical and developmental disabilities. See page 3 of the catalog for Lekotek's "Top 10 Tips for Buying Toys," a list of questions to help friends and relatives match a toy or gift to a child's abilities. Questions particularly useful to kids with autism spectrum disorders include: "Will the child be an active participant during use? Will the toy encourage social engagement with others?"

Progress on "Combating Autism Act," But Time Grows Short

First, the good news: the Combating Autism Act of 2006, which would provide $900 million in funding for research and services over the next five years, has 190 co-sponsors in the U.S. House of Representatives, according to the advocacy group Combat Autism. That means proponents have convinced about 50 new House members to join as co-sponsors since August 7, and are 28 co-sponsors short of a majority. The bill has already passed the Senate. You can read a recap here, which includes links to House and Senate versions of the bill.

Now for a sobering thought: there's one week left in this year's term, as Congress prepares to go home for the stretch run of members' re-election campaigns. As this New York Times article suggests, there's a lot left on politicians' plates-- and autism legislation doesn't make the front burner, what with issues like Iraq, definitions of torture, port security and immigration, just to name four. House and Senate leaders tell The Times that they will reconvene for a lame-duck session after the election, which means there will be time to work on some last-minute business.

But it doesn't leave much time, either way. You can go to this branch of the Autism Speaks website to see if your House member is a co-sponsor. If that person is, great. If not, you could consider sending a note or e-mail pointing out the merits of the legislation. And if you know friends or family who care about helping people with autism advance in society, and who care about researching the causes of this spectrum of disabilities, you can ask them to check if their House member is on board. If not, consider that election time is a good moment to get a House member's attention about something a constituent cares about, deeply.

Time Magazine Plays "Blame the Victim" with Parents of Autistic Boy

Time Magazine's September 17 article, "Who Pays for Special Ed" plays into the hands of critics of special education who allege that parents seek "too much" for their children at the expense of the rest of taxpaying society.

The story sets itself up as a typical two-sided affair. One side (the parents of 9-year-old Luke) seeks a lot: help getting their son with autism to stop his tantrums and use the toilet and be able to sit in church. The other side are school district board members and administrators, who say they can't afford to send Luke to a $135,000-a-year, out of state boarding school. The parents are sending Luke to this school, the Boston Higashi School, and suing for tuition refunds.

There are problems to this conflict that are not stated explicitly in the story. For example, one can read between the lines of the conflict to see that a key factor here is a refusal by the Berthoud, Colo., school district to consider a compromise school placement in a neighboring town. Second, while Time explains to readers that schools don't have to offer disabled children the "best" education, but rather a "free and appropriate" education, the story gives clear voice to school officials who say that it's not their responsibility to teach a disabled kid how to live outside of school. In fact, with disabilities like autism, schools do have to include such life skills as toileting and feeding skills on a student's individualized education plan.

A third point. Time's writers sinned by burying the most important aspect of the special education problem here: a lack of federal funding to help support school districts educate disabled kids. It's not until the 12th paragraph of a 13-paragraph story that we learn that "the federal government picks up less than 18 percent of the additional costs of educating" students with disabilities.

No wonder all Time found to write about was families and schools fighting. With the federal government's abdication of responsibility on this issue, school officials and families of disabled kids are left to fight amongst themselves. And then critics of special ed have at it, saying we have to keep those costs in line because every dollar spent on disabled kids takes dollars away from "regular classrooms" or activities like sports and gifted-and-talented classes. It's set up as a false choice -- one between special education and "regular education" -- because the federal government is not in the equation.

P.S. to school officials in Berthoud, Colo.: If you had just discussed alternatives with Luke's family, maybe you wouldn't be spending so much in legal costs right now.

The Virtue of an Insistent (and Appreciative) Advocate

This article from yesterday's New York Times health section, "Overattentive Families May Be Underrated," serves as a useful reminder of the importance of advocacy -- especially for those parents who find that they don't take naturally to the role. And though the article is about healthcare, the lessons apply to parents advocating for their kids in the special education system.

Article author Dr. David A. Shaywitz of Boston recounts two situations in which family members of sick people insisted that their loves ones needed immediate attention -- contrary to what medical experts felt was required at the time-- and explains how these families saved their loved ones' lives. (He asserts that overworked doctors and nurses can't spend enough time to pay enough vigilant attention to every patient's condition-- at least not as much as a patient's family can.)

Shaywitz gives some useful advice to laypeople who become advocates.

What not to do: He says he has "seen numerous cases in which hypervigilant families actually ensured that their relative received worse care, families so irritating that everyone avoided their room unless it was absolutely essential."

What to do: "The most effective families, it seems to me, are those who genuinely appreciate the efforts of frequently overwhelmed healthcare providers and who seek to work with them to help care for their relatives. At the same time, as a concerned family member, you may know the patient better than anyone else, and if you see something that doesn't seem right, speak up."

The Autism Acceptance Project

Check out The Autism Acceptance Project, a group based near Toronto that is holding a lecture series, art exhibit and concert featuring work and performances by adults with autism spectrum disorders. This special festival, called "The Joy of Autism," starting October 5 and running for about a month, aims to educate the general public about autism and achieve acceptance for people with autism.

Driving this project is Estee Klar, who seeks to make the world a more welcoming, accepting place for her young son Adam. Watch a video featuring them and a trio of artists whose work will be on display at the Joy of Autism festival. The list of speakers includes parents like Susan Senator, the author of Making Peace with Autism, as well as Phil Schwartz, vice president of the Asperger's Association of New England, who also has Asperger's. You can see Estee Klar's blog here.

The basic message from this project is: autism is here, let's deal with it, find the best services for our kids, include them in school or find the best alternatives. And surround them with love and help them find acceptance as adults.

Ohio Conference Focuses on Adults with Autism

The Medical University of Ohio at Toledo is holding an interesting two-day conference Thursday and Friday this week focusing on the issues involved in caring for adults with autism spectrum disorders. (You can see a brochure here.) Friday's program includes a field trip to Bittersweet Farms, a residential and day program for adults with ASD, in Whitehouse, Ohio.

Organizers are claiming the conference is the first in its area to focus specifically on issues related to adults with autism, including drug treatment, life expectancy, job training and family support. This story from the Toledo Blade introduces readers to some people who attend Bittersweet Farms while telling readers about the conference. Barb Yavorcik, president of the Autism Society of Ohio, tells the newspaper that it's often difficult for families to find facilities like Bittersweet Farms that cater to adults with autism.

The conference is set up for doctors, educators and support service providers, and includes a lineup of doctors speaking about autism in adults and reviewing some research about interventions for children and what that means when the kids grow up.

Video Glossary for Autism in the Works

Autism Speaks, the advocacy and awareness group, said it plans to unveil a free "video glossary" on its website early in 2007 to help parents understand the early warning signs of autism and the terms that doctors, educators and other professionals may use to describe what's going on with their children. A statement from Autism Speaks says the group plans to stock 125 video clips. Some of the clips will show examples of child development concepts like joint attention, which is what young children start to do when they want to engage another person's attention to share enjoyment of something. (This quick definition of joint attention comes from a longer document published on a website for an Autism Society of America conference in 2005.) Many kids with autism, parents know, have to learn how to experience and initiate this kind of shared enjoyment, a sense that comes naturally to typically developing babies and toddlers starting at 9 to 15 months.

Autism Speaks plans to make clips available showing examples of children with autism and their behavior, set up so that viewers can compare the behaviors to typical children. Some clips also will show different types of therapies that are available to help children with autism.

This video glossary is designed for parents who are new to the autism spectrum diagnosis and who are bombarded with information and need to start making decisions about what services to seek. It could also come in handy for parents who are having trouble conveying to others in the family that something different is going on with a child who recently received a diagnosis.

Autism Speaks is collaborating with First Signs, a group that advocates early identification and intervention for children with developmental delays, and Florida State University's First Words Project, an early intervention speech and language program.

Three Federal Autism Studies Launched; One To Examine Chelation Therapy

The National Institute of Mental Health (NIMH) in Bethesda, Maryland, today started three major clinical studies on autism, part of what the federal research center calls "the first products of a new, integrated focus on autism generated in response to reported increases in autism prevalence and valid opportunities for progress." You can read a press release from the NIMH on the announcement here.

The three studies include one that "seeks to address the widespread but unproven theory that autism may be treated successfully by chelation therapy, which seeks to remove heavy metals from the blood," the NIMH said, adding that families who believe autism was caused by the mercury-containing vaccine preservative thimerosol seek the treatment to remove mercury and other metals from an autistic child's blood.

The government's announcement doesn't say so, but chelation therapy is controversial. The launch of this study comes one year after a 5-year-old British boy died during chelation therapy treatments in a Pennsylvania doctor's office -- a case the police are still investigating, The Pittsburgh Post-Gazette noted recently.

The NIMH also launched a study to examine the use of the antibiotic minocycline, a drug that has anti-inflammatory effects on the body, to see if it is a useful treatment for regressive autism. This is in response to past research which suggests that autism may be linked with changes in the immune response system that cause the brain to swell.

And the NIMH will define differences, behavioral and biological, in autistic children with diverse developmental histories. "Increasingly," the NIMH notes, "scientists are considering the likelihood of 'autisms,' that is, multiple disorders that comprise autism." Scientists will study children with two types of autism -- regressive and non-regressive -- and compare them to kids who have other developmental delays and to typical children. The researchers will examine a subset of these children to study whether environmental factors may trigger symptoms of autism.

Tips for the Start of the Special Education School Year

With the new academic calendar just starting, here's a useful list of "10 Tips for a Successful School Year" by Pat Howey, an advocate at Special Education Consulting in West Point, Indiana. The list includes a set of good practices such as reviewing your child's IEP, getting to know your child's new teacher and breaking out a fresh notebook dedicated to managing the school year. The article is not specifically aimed at parents of students with autism, but rather at all families with a child receiving special education services. Click on the link and you will find a web page at Wrightslaw.com, part of a series of educational pieces designed to train parents to be informed, diplomatic advocates for their children.

A Court Victory for Virginia Parents Seeking Services for Autistic Child

In a victory for a family seeking services for their 12-year-old child with autism, a federal judge ruled last week that the school district in Hanover County, Virginia, failed to offer a free and appropriate education for the child as required under federal law. The result of the ruling (pending appeal) is that the school district will have to pay for the child's private school tuition. The case is called J.P. v. School Board of Hanover County, Va.

This article from the Richmond Times-Dispatch explains the facts of the case. The article points out that this is the second legal victory this year won by parents of kids with autism in front of federal Judge Robert Payne. (You can read about the other case, Henrico County School Board v. R.T., here.) In the latest case, the judge found that school officials in Hanover County did not accurately represent the facts of J.P.'s abilities, and so created a program that did not appropriately serve his right to an education.

Peter and Pamela Wright, the couple that make up Wrightslaw, have a very useful summary of the issues in this case that would be helpful for parents and special education lawyers to study. See the Wrights' writeup here, which also links to a copy of the 88-page court decision.

For example, the Wrights point out, the case shows how vital it is to keep reliable, objective data reflecting what progress a child in a special education program makes -- or fails to make. The judge criticized the school district for presenting a speech therapist's log in court that purported to show J.P.'s progress. But in fact, other evidence that was more reliable showed that J.P. was not making progress.

The moral of the story: J.P.'s parents were justified in persevering with their concerns about their child. They could have given up after a state hearing officer rejected their arguments. But they pressed on and prevailed.

Vote for Autism Activist in Volvo Contest

Check out the Volvo for Life Awards and consider voting for Carolyn Gammicchia, a police officer, mother of a child with autism and activist for Americans with disabilities from Shelby Township, Michigan. Your vote online could benefit public safety programs for people with autism.

Carolyn is one of more than 200 citizens from across the United States who are semi-finalists in this contest. All are people deserving of recognition who are doing good works in public safety, quality of life and the environment. The top nine vote-getters in this Internet balloting will win awards ranging from $25,000 to $50,000 to give to the charity of their choice. (The winner selected by a panel of judges also gets to drive a Volvo for life.)

If she wins, Carolyn intends to donate any money she gets to the Autism Society of America, according to her husband Andrew, "to assist in the development of a national training model for first responders and how to best meet the needs of individuals with Autism." That will greatly benefit the kind of work the Gammicchias have done already through their group the Law Enforcement Awareness Network, also called L.E.A.N. on Us.

You can read more about Carolyn by going to www.volvoforlifeawards.com. See the U.S. map and click on Michigan, then click on her picture. And vote. The voting lasts until February.