A New Blog for Applied Behavior Analysis Junkies

Angela Mouzakitis, a board certified behavior analyst (BCBA) who teaches in the graduate special education program at City University of New York's Queens College, has only been blogging for a few months, but she has things to say that could enlighten parents and families of children with autism spectrum disorders who want to understand more about topics applied behavior analysis (ABA).

ABA is the method of behavioral management -- of using positive reinforcement to encourage and shape positive behaviors while discouraging and eliminating negative behaviors -- that is widely used in teaching people with autism everything from bathroom etiquette to talking, reading and writing. But for a range of reasons -- it's challenging to do well, it's labor intensive, it's demanding on everyone involved, if not done well it can make conditions worse -- ABA has a PR problem. (Notice how the presenter in this article, What Makes An Effective Home-Based ABA Provider, advises behavior analysts to avoid generating negative perceptions of ABA service providers.)

Enter into this context Angela Mouzakitis' blog, called Applied Behavior Analysis: Current Topics. Not all entries appear written for laypeople, but most of the ones I have scanned are interesting. Take a recent essay on "the table, the chair and Applied Behavior Analysis," in which she explains why it's wrong for ABA therapists to insist on doing discrete trials at a table with very young children who are upset. She writes:

The focus of the first couple of weeks of session should be getting to know the child, performing assessments in the natural environment through observation of the child's interaction with family, people, and the environment. Language samples should be monitored. As the child becomes more comfortable and begins to get excited to see his therapists, more structured programs can be implemented. However, the majority of ANY session, with ANY age child, should not be at the table. This is a tool used in therapy, but not the only one, and certainly should not be the focus of an ABA program.

This is a challenge for many therapists and families. Many of us are married to the table, and find it challenging to pull away from the table and engage the entire environment that a child lives in. While challenging, it is necessary, and requires talented and creative therapists to be able to use all aspects of a child's environment.

Therapists will not leave the table on their own and may require training and coaxing to leave it. The table is easy. Sitting a child in a chair, once instructional control is established and running cards and programs, is easier than identifying learning opportunities in the natural environment. Training is necessary. Often natural environment instruction is perceived as playing in the natural environment and questioning a child on labels, colors and shapes in everyday objects. Natural environment teaching requires planning, programming, and data collection and monitoring.

The bottom line is that the child's instructional environment should from the beginning be positive and enjoyable. If the child is screaming when he sees a therapist, crying at the table, something has gone terribly wrong and must be changed. ABA therapy for children with autism does NOT equate discrete trial teaching in a chair at a table. The principles need to be applied to teach a child functional language and skills that will promote independence in his life. This should be done in any and all environments that a child will experience. Divorce the table.

What's interesting about Angela's post is her ability to explain both the discipline and creativity involved in delivering quality ABA services. Another recent post on "Parent Anecdotal Records" does a similar good job explaining the need for parents to collect accurate information about what happens at home, and suggestions for how to do it well.

The Autism Puzzle Shows Its Complexity in Autism Speaks Controversy

That members of the same family disagree on how best to deal with a child's autism is not news. (Concerns about divorce among parents of autistic kids recently led the National Autism Association to announce a new program to provide marriage counseling to keep parents together.)

What is news is that members of the Wright family -- founders of Autism Speaks, arguably the nation's most successful charity at raising public awareness, advocating for Congressional support and collecting dollars for autism research -- are disagreeing, vehemently, in public, about the way to deal with every child's autism. The New York Times' front-page story today, "Autism Debate Strains a Family and Its Charity" illustrates how people united in their desire to help people with autism can come into conflict.

The quarrel between Bob and Suzanne Wright and their daughter Katie Wright, stems from comments Katie made to David Kirby, author of "Evidence of Harm," which argues that mercury in vaccines given to young children is a cause of rising autism rates. (You can access a portion of the interview here via AutismMedia.org.) Katie's son Christian has autism and his diagnosis in early 2004 led her parents to form Autism Speaks. The organization has absorbed other advocacy and fund-raising organizations including the National Alliance for Autism Research and recently Cure Autism Now.

In her interview with Kirby, Katie Wright praised both her parents as wonderful, strong advocates. And she insisted she was not commenting as a representative for Autism Speaks; but at the same time, she argued that it was time for groups like Autism Speaks to put genetics-related research on the back burner in favor of looking into the possible environmental causes for autism spectrum disorders. "I think that people who have been doing this a long time, pioneers who were doing this in the early 1980s when nobody was paying attention, these people are more conservative researchers and parents, are so resistant to change, I think they are frightened that they could have been going down the wrong path," she said, adding, "It's clear to me that we have been going down the wrong path in research. ... It's time to step aside" and let the parents of younger children take the lead, she said.

Her remarks sparked dueling statements, first from Autism Speaks disavowing Katie's remarks as not representing the group. Then Katie Wright posted a statement expressing disappointment in Autism Speaks, and reasserting that "it is my greatest hope that Autism Speaks as well as the scientific and medical community will fulfill their promises and commit themselves to the environmental, biomedical and therapeutic research so urgently needed." (The quote comes from a longer statement posted on the home page of the National Autism Association.)

The Wright's family drama illustrates a number of themes, not the least of which is the desperate urgency that parents like Katie feel to help their children. That's undeniable and widely shared. But it's also clear that the biggest challenge facing the autism community -- including people with autism, their families, clinicians, educators, researchers, service providers, advocates, policy makers, advocates -- is that its members frequently and loudly present themselves as belonging to several different communities.

There are people who believe in behavioral approaches. Those who see dietary restrictions and supplements as essential. Those who believe environmental causes, like mercury preservatives in vaccines, are autism's cause and therefore must be the primary focus for research and experimental treatments. Those who see the benefits of prescription medication. Those who see a combination of some of these as the way to go. Others who emphasize acceptance as the most important approach. And that doesn't cover everyone.

So it's not difficult to find, say, a group of families who have autistic children and find all of these beliefs and varied approaches represented in the gathering. They may be united in their desire to help their children, but they are not united in how to go about it.

Surely the complex and varied nature of autism spectrum disorders, and how they affect the lives of the people touched by them, makes this dynamic impossible to avoid -- at least until we have more answers. More clarity about what autism is, and what different autistic subtypes are. More information about its causes. More answers about effective treatments that resonate with more people. More supports in more communities for more individuals and their families. And more understanding.

Texas Governor Signs Autism Insurance Bill

Without fanfare, Texas Gov. Rick Perry signed a bill to amend the state insurance code to require some health plans to cover autism-related services for children older than 2 and younger than 6 years old. The Houston Chronicle cited Perry's signing the bill (House Bill, or H.B. 1919) in a story posted June 16 which summarized a number of the governor's legislative actions. (See story here.) The governor's website confirms Perry signed the bill, which includes other issues related to health insurance for individuals with brain injuries. Perry's office has not yet posted a statement about why he signed the bill, in spite of a powerful business lobby's opposition. (Read more background here.)

You can read text of the bill, H.B. 1919, via the Texas Legislature website, by clicking here. The new law takes effect September 1, 2007 and spells out what kinds of autism-related services must be covered, including evaluation and assessment services; applied behavior analysis; behavior training and behavior management; speech therapy; occupational therapy; physical therapy; and medications and nutritional supplements "used to address symptoms of autism spectrum disorder."

With the passage of new insurance laws in Texas and South Carolina, I've updated a map of what state legislation around the United States says about autism-related services. See the map below on this blog, here or here.

Advocates Establish Autism United to Offer Community Services; First Efforts Based on Long Island

Autism United, a new coalition of advocacy groups and service organizations based on Long Island, N.Y., announced its plans to provide community-based services, information and fund-raising for research in a press release June 12. Read the press release here, and see the group's new website AutismUnited.org.

The first two projects are to create a resource center (named in honor of a state legislator, Harvey Weisenberg), and to perform "a comprehensive study to provide an accurate count of the number of people with autism living on Long Island." Plans also call for projects in other states with money collected through fund-raising walks. The first event is scheduled for September 30 at Belmont Lake State Park in Babylon, N.Y.

Participating organizations include Long Island chapters of the Autism Society of America and the National Autism Association, as well as A-Champ (Advocates for Children's Health Affected by Mercury Poisoning) and Lifespire, a non-profit organization that helps people with developmental disabilities to live in their communities.

Texas Autism School Voucher Bill Appears Stalled

While researching bills in the Texas Legislature, I looked up Senate Bill 1000, a proposal to allow parents to use public school vouchers to send their autistic children to be educated in schools of their choice, including private schools, using state money. The bill appears to be stalled in the Senate, with no action reported in the House. (Find it here, via the legislature's website.)

This bill got some attention earlier this year among education policy watchers. (See "Autism Takes Stage in School Voucher Debate," here.) While proponents saw the idea as a way to help children with autism spectrum disorders, critics (including educators who have opposed school voucher plans in general) opposed the measure as an attempt to open the door to broader attempts to use public funds for private schools.