The evolving science of autism spectrum disorder

A recent story in the New York Times describes the ongoing evolution and evaluation of medical and scientific understanding of Asperger's syndrome and similar conditions within the range of autism spectrum disorder.

Here's an excerpt:

If these experts have their way, Asperger’s syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder — a category that encompasses autism’s entire range, or spectrum, from high-functioning to profoundly disabling.

“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,” said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual [on psychiatric diagnoses, being revised for publication in 2012].

“Asperger’s means a lot of different things to different people,” Dr. Lord said. “It’s confusing and not terribly useful.”

Taking Asperger’s out of the manual . . .does not mean the term will disappear. “We don’t want to say that no one can ever use this word,” Dr. Lord said, adding: “It’s not an evidence-based term. It may be something people would like to use to describe how they see themselves fitting into the spectrum.”

A new ray of light (and hope) for children with autism

A diagnosis of autism is heartbreaking for the parents of a young child whose development is delayed or impaired. Now, the Washington Post reports that a new study seems to indicate that some children with autism spectrum disorders can be treated and possibly even "cured." Of course, the study raise hopes for parents, and therefore these early results are controversial if they only offer a false hope. Yet, the study may lead to a fuller understanding of autism and the treatments and teaching techniques to assist the children effected by the disorder.

"I don't know that the children 'recovered,' though they did improve . . . to the extent that they no longer met the diagnostic criteria," [Vanderbilt University professor of pediatrics and psychology Wendy] Stone said. "Almost all continued to have some form of developmental disorder."

"I think the most hopeful message we need to give parents," said Geraldine Dawson, chief science officer of the nonprofit group Autism Speaks, "is that all children with autism are capable of learning and developing new skills with the help of early intervention."

Special needs trusts

The Wall Street Journal recently included an article on special needs trusts.

Here's a bit of statistical information from the article:

More than 41 million Americans, or almost 15% of the population age 5 and older,
have some type of disability, according to the 2007 Census survey data. Some 6.2% of children age 5 to 15, or 2.8 million children, have disabilities, the Census Bureau found. And individuals with disabilities are living longer than ever before. That means that many disabled children will outlive the parents who support them.

To address the future needs of such children when they become adults and especially after their parents are gone, parents can prepare documents for the health-related and financial well-being of their children. Parents should consider special needs trusts, sharing information with relatives for the relatives' estate plans which may benefit the child with disabilities, powers of attorney or guardianships, and letters for caregivers. Because the laws regarding special needs trusts are complicated and vary from state to state, it is highly adviseable that parents check with a well-qualified attorney when they wish to explore or pursue such a trust.

One starting point, especially for those with modest-sized estates, is the Wisconsin Pooled and Community Trusts (WisPACT) website. WisPACT is a special needs trust with subaccounts for individual beneficiaries, where each subaccount may be relatively small, but the pooled assets of all the beneficiaries can be professionally invested and managed.

"We're not letting autism back us into a corner."

In spite of the challenges and frequent (but thankfully, lessening) public misunderstanding or disapproval of associated behavior, families are traveling with their children with autism spectrum disorders. A combination of family coping skills, growing societal awareness, and special travel accomodations creates greater opportunities for the kinds of family vacations that many of us take for granted.

"[W]ith Americans who have disabilities spending $13.6 billion annually on travel in the United States (not including the caregivers and family members who often accompany such individuals) . . . , a small but growing number of tour operators, travel agents and resorts are offering specially geared getaways."

In another story, a family explains how their advanced planning helps a college-bound son with Asperger's syndrome and mental illness. This young man shows great promise in math and science, and his family arrangements give him the extra support he needs to succeed. These stories illustrate how broad inclusion of those with autism spectrum disorder can enhance the lives of those individuals AND the rest of society.

Attorney Barbara S. Hughes, one of the law partners I work with, has created an education power of attorney to assist young adults with disabilities continue to include their parents in their educational decision-making. Here is a short article describing how she developed it, and what it entails. Without such a power of attorney, parents could be excluded from student records or other confidential information and processes after a student reaches the age of majority. An education power of attorney, in similar fashion to a financial power of attorney, adds parental involvement without taking away any of the student's rights or authority.

(Photo by Baston, used by permission.)