Clinical Director of The Rebecca School, Manhattan, New York
How are the DSM criteria for autism changing? From the official site:
"A single spectrum disorder [i.e., folding in Asperger Disorder and PDD-NOS] is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints.”We spoke with Dr. Tippy about what the proposed revisions to the DSM 5 will mean for Autistics, autism families, and autism professionals. Dr. Tippy also outlined actions everyone in the autism communities can take to prevent these changes from cutting off critical autism services and support.
"Three domains become two:
1) Social/communication deficits
2) Fixated interests and repetitive behaviors
"[because] Deficits in communication and social behaviors are inseparable and more accurately considered as a single set of symptoms with contextual and environmental specificities."
Why do you think people are so concerned about the DSM 5 changes?
It's important to remember that these changes are not new news. They've been in process for the past four years, and these guideline changes have been posted publicly for the past 18 months. What has happened is that Dr. Fred Volkmar, who used to be on the committee but left the working group, decided to do a study to see how many kids diagnosed under the old criteria would meet the criteria for the new Autism Spectrum Disorder diagnostic category. His study concluded that some of the kids who previously were diagnosed with PDD-NOS and Asperger Disorder would no longer meet the criteria for Autism Spectrum Disorder. The working group that is developing the new criteria felt that [Volkmar's] study did not take into account that a good diagnostician, a good Clinical Psychologist for instance, would look carefully at the child in light of the new criteria, and then diagnose appropriately.
I have to say I agree with both sides of this disagreement. I think that no child or adult, previously diagnosed with an Autism Spectrum Disorder by a thoughtful clinical professional should worry that he or she, or their child, will not be diagnosed appropriately with the new criteria for Autism Spectrum Disorder. However, I do believe that there is plenty of reason to worry, and for raising the alarm, Dr. Volkmar is to be thanked.
How will the changes to the DSM 5 affect eligibility for an autism diagnosis and services? That seems to be folks' concern, based on Dr. Volkmar's report and his statement about nipping the "autism surge" "in the bud."
The changes are not going to affect people who are diagnosing or treating people with autism. A good diagnostician is careful and thoughtful, they should see the overall picture of a person, their symptoms. The new criteria urges talking to family and other treatment professionals, but -- again -- a good diagnostician should already do this.
People won’t necessarily lose services because of the change in criteria. If, for instance, you had Asperger Disorder, you wouldn't lose support -- you would lose the Asperger diagnosis and instead have an autism diagnosis, on the less severe side of the spectrum. Same with PDD-NOS -- if you currently meet the criteria for that diagnosis, you'd meet the new criteria for an autism diagnosis. It’s worth mentioning that many kids and adults with Asperger's and PDD-NOS aren't getting appropriate services right now under the current diagnoses!
The problem is not with the changed definition or service providers, it's with the people paying for services. People who have services now may lose them because insurance companies could use the new guidelines to disqualify people. This makes sense; corporations' missions are about cutting costs; they may use the new criteria to say, "Well, you don't have a psychiatric disorder." While it's reasonable for companies to cut costs, it is not reasonable if it unfairly affects quality of life.
It all depends on the way in which the federal government makes these criteria part of the Affordable Health Care Act, which will be finalized by 2014. What is critical, where we need to take action, is in letting our state and federal legislators know that we vote, that we are watching this issue closely, that we demand appropriate coverage for autism, and that we will not compromise.
The federal government will be watching key states like California and New York closely to see how they legislate autism coverage -- and will use those rulings as the basis for its decisions. Once everything is formalized, local school boards will respond to state guidelines, which will in turn be based on Federal guidelines. So, it's especially important that we all take action now at the state level, especially those of us who live in key states.
Everyone needs to use their voices, needs to get together and say, "You can't exclude us! You can't legislate us out! We have power!"
What will the new criteria mean for adults?
It affects all ages; it doesn't matter if you are 60 or your child is 18 months old and starting to show signs of autism.
What are the goals of the DSM 5 Task Force with regards to autism and the new criteria?
I think the intent of the DSM 5 task force is to make things cleaner and easier for the people who will be using the criteria. This may be especially useful for diagnosticians with less experience. (Task force member Catherine Lord has also stated a goal of ensuring "...autism was not used as a 'fallback diagnosis' for children whose primary trait might be, for instance, an intellectual disability or aggression.")
I work in a school, I know there are other forces at hand -- and if you don't speak up, people who don't have you or your child's best interests at heart will be making decisions that affect them. We have to speak up, we have to do our own lobbying -- because you know that other special interest lobbyists are going to be trying to affect policy as well.
I don’t believe that these clinical diagnostic guidelines will affect one thing, not until state legislation passes, at which point federal guidelines will be based on the new state guidelines as an example of what's reasonable. Once the Affordable Health Care Act becomes law in 2014, federal legislation will determine who gets paid, and who gets treated.
People need to understand that the DSM 5 will be published, the issue is how people are allowed to interpret it. Again, advocacy groups need to get out in front!
What do the new severity scales mean? [Follow link, click Severity tab]
The new criteria will have a scale for social/communication, and restricted interests: Level 1 is "Requiring Support," Level 2 is " Requiring Substantial Support," and Level 3 is "Requiring Very Substantial Support."
That's where we need to lobby -- we need to make sure insurance companies aren't allowed to split people off due to their severity level, or say "We're not going to pay for a level one, for an 'awkward adult.'" This is especially important once young adults get out of school and enter society.
Officials get elected based on promises to cut costs -- what if they say, "We'll restrict services to Level 3! That's how I'll balance the budget!"? People are right to be worried!
What is your overall message about the DSM 5 revisions and autism?
The proposed changes in diagnostic criteria are worth being worried about, but not because the clinicians will exclude people from treatment; they will continue to diagnose and treat appropriately. If you, or your son or daughter has an appropriate diagnosis on the Autism Spectrum now, responsible clinicians will find that you or your children meet the criteria for Autism Spectrum Disorder under the new guidelines. Again, the place where we need to put our energies is in advocating with our elected officials on the state and federal level, to not allow our children to be excluded from appropriate treatment based on the new severity scales associated with the diagnosis.
The time to do this advocacy work is now, as health care legislation is in the works, and powerful lobbying groups will go in and speak to your legislators if you don’t. Parents and people with the diagnoses need to be the people who are directing this legislation. If you do not feel like you can go directly to your representatives, go to the not-for-profits you support who hire lobbyists to influence legislation. Tell them that you do not wish to have them advocate for one behavioral treatment or another, but that you want them to advocate for appropriate services under the new law. Insist with them that they need to follow your wishes, or you will no longer support them financially. There is power in numbers, and if we all joined together we could assure a better future for ourselves and our children!
- Find your federal representatives by zip code at www.house.gov
- Find your state representatives via thomas.loc.gov/home/state-legislatures.html
- Dennise Goldberg, Special Education Advisor: Proposed DSM-5 Changes and Autism: Ed vs. Med
- Melody Latimer, ASParenting: DSM-V Under Attack
- Allan Frances, M.D., Psychology Today: DSM 5 Against Everyone Else
- Judith Warner, Time: The One Question We Should Be Asking About the New Autism Definition
- Sullivan, Left Brain/Right Brain: The DSM 5 and Autism