APA considers new definition for autism, a change that could limit kids’ access to special education

Autism is a word that haunts parents.

More than 36,000 children are diagnosed each year in the United States with it, a disorder involving impaired social skills and communication.

Most parents dread hearing that their child has it. Now, some parents are dreading the opposite — that their struggling child who might be or who already is considered autistic will no longer meet the clinical definition.
In this 2011 photo, a British girl with autism plays with a doll designed to teach communication skills. (Alastair Grant - ASSOCIATED PRESS)

The fear comes as the American Psychiatric Association is considering a new definition of the collection of disorders commonly known as autism.

It would create a new category called “autism spectrum disorder” and pull under its umbrella previously separate disorders, such as Asperger’s syndrome and childhood disintegrative disorder. Supporters of the proposal say its more strict criteria would lead to a more accurate diagnosis and effective treatment.

It also may also disqualify many families from the special education and services on which they have come to rely.

After the New York Times published a front page story on the issue Friday, the APA issued a press release [pdf] noting that the final decision is still “months away.” Nonetheless, the APA did not back away from a recommendation it said reflected “the work of dozens of the nation’s top scientific and research minds and are supported by more than a decade of intensive study and analysis.”

I asked Geraldine Dawson, the chief science officer for the advocacy group Autism Speaks, to explain more about the proposed change and how it might affect families of autistic children.

Here is our edited Q&A:

How would this definition differ from the current definition?

The scientific rationale behind the changes actually are quite solid. The different distinctions among the subtypes (Autism, PDD-NOS, Asperger’s syndrome, and so on) don’t map onto different causes or different treatment approaches. For example, a very similar treatment approach would likely be used [on] someone with Asperger’s syndrome, as would be used for a child with high functioning autism. The only distinction between Asperger’s syndrome and high functioning autism in the current system has to do with how much speech the child had by 3 years of age.

It has been difficult for even expert clinicians to make reliable distinctions among the subtypes because these distinctions rely on people’s recollection of very early history. So, it does make sense to use a broad category – Autism Spectrum Disorder (ASD). In addition, for each person, the doctor will need to describe the severity of symptoms, presence and degree of intellectual and language disability, and other factors, such as presence of medical conditions and genetic etiology (e.g. fragile X).

While the new changes make sense scientifically, we need to keep in mind that this is not simply an academic exercise. We need to make sure that these changes don’t lead to people being denied the services they need and deserve.

How close is this proposed change to becoming part of the Diagnostic and Statistical Manual of Mental Disorders, the definitive guide to mental disorders? What has to happen before it becomes part of the new edition of the DSM planned for release in May of 2013?

The proposed new DSM criteria for diagnosis of ASD are very close to being finalized but still need to be fully tested in field trials...

The proposed criteria are available for public comment. The first two periods of comment took place in 2010 and 2011 and are now closed. However, a third and final period for public comment will be opened in the spring of 2012. See http://www.dsm5.org/ for more information about the criteria and process.

How might this suggested change affect families with autistic children? Could they lose out on access to special education and other resources?

We really don’t know yet how the new system will influence the ability to receive a diagnosis or services...The concern is that persons struggling with autism symptoms may not qualify for a diagnosis under the new system, especially those who are more cognitively capable. We won’t know how much of a concern this is until definitive studies are conducted...

Although it is possible that some service providers or funders could request a re-evaluation, especially if a child or adult is seeking new services, it is our hope and understanding that the current diagnosis will stand for existing services. Presently, many social service, medical, and educational programs require an assessment and diagnosis of ASD to determine eligibility for ASD-specific services, such as early intensive behavioral interventions.

Almost all the autism insurance laws that have been enacted in 29 states define autism spectrum disorders according to the most current definition of autism in the DSM; thus, all categories of autism, as long as they meet the criteria of autism spectrum disorder, will continue to be covered.

Does Autism Speaks have an opinion on the proposal?

Although the scientific rationale for the new criteria is solid, Autism Speaks is concerned and will monitor carefully whether the new criteria will exclude persons struggling with ASD symptoms who are in need of services. We are committed to ensuring that all people get the services they need, regardless of whether their condition is severe or mild.

Those who have milder symptoms (which can occur because they have responded well to early treatment or other interventions) can be helped to live productive, satisfying lives by continuing to provide some level of support (e.g. job coaching).  Helping people achieve their highest potential is important not only for people with ASD and their families, but for society as a whole as this lessens the financial burden to society in the long run.

What do you think of redefining autism? Is it a good idea or will it jeopardize struggling children?

Related content:

Va. families of autistic children still waiting for coverage

MyAutismTeam.com: New social networking site for parents of autistic kids

Parenthood’ producer Jason Katims on including a character with Asperger’s Syndrome on television

His autistic son’s terrific memory helps him connect with others

View the original article here

Gridlock in Washington, change everywhere else: 2011 in health policy

(Kiichiro Sato - AP) It was the most gridlocked of times, it was the least gridlocked of times. In one sense, nothing much happened in health care this year: Congress and the White House proposed ambitious Medicare reform packages, only to take little action. But in another sense, everything changed--and it changed quickly-- as 2011 saw insurance plans, hospitals and doctors frantically reorganize themselves around the health reform law.

After the 2010 passage of the Affordable Care Act, health care legislation settled into a bit of a holding pattern. It wasn’t for a lack of effort: House Republicans kicked off the year with a Jan. 19 vote to repeal the health reform law. Budget Chairman Rep. Paul Ryan would follow by defining the deficit reduction debate as one over Medicare spending, while the White House pushed out any of the good news it could find on the health reform law. Sen. Ron Wyden (D-Ore.) rounded out the year by partnering with Ryan to endorse a Medicare reform plan where seniors could use government funds to purchase a public or private insurance plan.

But for all the health care policy and politics, nothing much changed. Aside from a tiny tax-reporting requirement, Republicans failed to repeal any part of the health reform law. No grand bargain was struck in this summer’s deficit reduction negotiations. And while some Medicare proposals were positioned as “game-changing,” it all felt a bit familiar to veterans of the debate. As Heritage Foundation’s Bob Moffit and Rea Hederman note, the Wyden-Ryan plan that rounded out this year picked up where similar proposals in the 1980s and 1990s left off. As Princeton’s Uwe Rhinehardt put it in the New York Times “The Ryan-Wyden Plan: Deja Vu All Over Again?”

“The politics of Medicare are depressing,” says John Rother, who spent 27 years at the AARP before leaving this year to become CEO of the National Coalition on Health Care.

This year, he says, was no different. “I’m not sure we’ve moved the ball very far despite a lot of attempts to make the program more efficient.”

And on the health reform law too, public opinion remained stubbornly stuck in place: Americans are just as evenly split on the health reform law as they were when it passed in March 2010:

A lot of that probably has to do with most of the health reform law still not implemented: Many benefits, like an end to pre-existing conditions, won’t start for another two years. The health insurance market is just as dysfunctional as its ever been, with individual market premiums rising to their highest level ever. With little noticeable change to the public, it’s hard to rally voters in favor of the health reform law.

Rallying Americans against the Affordable Care Act has proved an equal challenge. The law’s unpopular requirement to purchase health insurance has not started yet -- and may never start, depending on how the Supreme Court rules in 2012. The Supreme Court will hear more than five hours of oral arguments over three days in March. The Court will opine by late spring on whether the federal government can require Americans to purchase health insurance and, if it can’t, what that means for the rest of the law. With that lawsuit pending, many states have moved forward cautiously on implementing the health reform law, not wanting to lay the groundwork for a law that could disappear in six months time.

But compared to all that gridlock in health care politics and policy, the health care industry feels like an alternate universe. As Anna Wilde Mathews chronicled in a heavily-reported Wall Street Journal piece this month, the health care industry is became increasingly consolidated in 2011: Hospitals launched their own insurance plans. Health insurance companies bought up physician practices and health care technology companies. Some health insurance plans went out of business. New partnerships and mergers sprung up regularly.

“There’s this feeling, in the health care world, that something big is going to happen,” says Bob Kocher, a former Obama advisor and current health care venture capitalist. “Maybe it’s the Affordable Care Act, maybe that’s overturned and it’s something else, maybe it’s the Affordable Care Act on steroids. Either way, something is going to happen. The fiscal situation is forcing the government to act and businesses to ask. So people are changing their business plans and repositioning.”

A lot of that had to do with all the wave of health care regulations released this year, largely as part of the Affordable Care Act. The health care industry operates in a world that’s changed a lot in 12 months. A new medical loss ratio requires them to spend at least 80 percent of every dollar on medical costs. Accountable Care Organizations, a new, bundled payment system that Medicare begins testing in 2012, pushes hospitals, doctors and insurers to collaborate more. Double-digit premium increases are now subject to increased regulatory scrutiny to determine whether or not they’re “reasonable.”

“Our members all created special units this year to make sure they’re keeping abreast of all the new requirements,” says Karen Ignagni, president of America’s Health Insurance Plans. “That has been a full court press.”

In health policy, 2011 might be best viewed as the year of getting ready. The health care industry got ready for a wave of changes already coming at them, moving towards more integrated and coordinated care. Congress readied for a battle over Medicare spending, but never quite fought one. And the White House got ready for what will be a hard-fought battle to implement and sell the health reform law over the next two years. And it’ll probably be much of the same story in the coming year too, as health industries ready for a Supreme Court decision, a presidential election and another wave of regulations that stand to shape the sector for years to come.

View the original article here