No matter what parents like me say, or what advocates say, the Diagnostic and Statistical Manual of Mental Disorders is going to redefine Asperger’s and autism when the new version, the DSM-V is released later this year or early next year. As it is now, the DSM-IV has a broader category of autism spectrum disorders, of which Asperger’s belongs in the higher functioning area.
When I first starting reading and researching this, I found myself already having my mind made up about where I stood. In my mind, this was a terrible thing. And then I took a step back and relaxed and did some further investigating. While I may not be totally convinced of the reasoning for the changes, I at least understand some of the rationale. It basically came down to how it was presented in some of the articles I read, and you can click here and here to read a New York Times article or an article from NPR.
The way the material was presented in the Times left me a little upset. It seemed to focus on more of the negatives of a new definition, such as the possible number of individuals that may lose services because they are considered disabled now but may not be with the changes. Or the people who may lose protections under the Americans with Disabilities Act, or students that may be removed from specialized services in school, or have their IEP discontinued. All valid concerns, I think, and my hope is that the impact will be minimal. The most troubling part of the article is the quote from Dr. Fred R. Volkmar, the director of the Child Study Center at the Yale School of Medicine regarding the increase in those getting an autism diagnosis: “We would nip it in the bud.” Spoken like someone who could care less about people in general. Dr. Volkmar presented some flawed numbers to back up his “nipping in the bud” claim that showed about 75% of those with Asperger’s would no longer qualify as being autistic; of course, he bases his claim from the analysis of data that is nearly 20 years old and was collected by doctors who were not fully aware of what behaviors the definition required.
The NPR article was a little more reassuring. It summed up the changes as ones that will help un-blur the lines of a diagnosis. Because an Asperger’s diagnosis currently relies on the evaluation of a person’s language skills, the criteria are rather subjective. The new definition will help to eliminate the subjectivity of an evaluation. As Roy Richard Grinker, the father of a daughter with autism, is quoted in the article, “I want to be able to turn to the official criteria and see a description that sounds like my child.” He goes on to note that he believes that “almost anybody with an Asperger’s diagnosis also could qualify for what is called autistic disorder” under the new definition, meaning that most people would not lose the services they are currently receiving. And because there are some states that provide services to children with autism but not those with Asperger’s, the new definition could open up services to more people. Quite the contrast to the Times article information.
The big question is: What does all of this mean for Kaitlyn? The answer is, it means nothing will change. Amber and I know who and what our daughter is, and we could not be happier. We know that she is “different” than other kids socially, and a change in a scientific definition will not change that in her. I am fairly certain that she will qualify as autistic under the new definition, at least when I compare her diagnosis to the proposed new criteria. A new definition will not change how we go about raising Kaitlyn; we were introduced to a whole new understanding of her at this time last year, and we are better parents for it. We were never going to let her be defined solely by her Asperger’s, and it is never going to be an excuse for us, either, and that will not change. I’ll say it here and get it out early: no matter what the new definition says about her, Kaitlyn is an aspie, and we are proud of that fact, just as we will be proud of her inclusion in the category of autistic under the new criteria.
I guess the biggest change may be the name of this blog, but that is not a given and is a long way off.
Study after study concerning an autism diagnosis points to early intervention as being a key contributor in the overall well-being of the individual. It makes sense, because the earlier you can address anything, the greater the potential for a favorable outcome. Autism and Asperger’s are no different.
We are fortunate that Kaitlyn was diagnosed at a really young age (4), and that we were able to start the process of doing everything that we needed to do to improve her daily life. We’ve started her in Miracle League, which has given her an opportunity to play sports in a completely fun environment, and it has also forced her out of her shell; I would have never thought that she would drop me as her “buddy” as quickly as she did, but the safe, fun environment that Miracle provides has allowed her to branch out and work with a new “buddy.” We battled the school district and have won, and will be meeting with school officials next month to construct her IEP.
It is the small doors that are opened up through early intervention that are key.
I fear, however, that through a combination of cuts to education funding and a change in the criteria to diagnose ASD, many children will be overlooked or bypassed, thus not having the benefit of early intervention strategies.
The DSM-5, the psychological assessment tool critical in diagnosis a variety of disorders, including ASD/Asperger’s, is due out in 2013. In it, there will be only one category—autism. No more high functioning autism, no more Asperger’s. Individuals will have to meet a more strict set of criteria to receive a diagnosis, possibly opening the door for many to be overlooked. I am certain that Kaitlyn could fool the new criteria, but it was because of the persistence of her doctor, and the broader definition for Asperger’s that allowed us to begin our early intervention strategies. There is no telling what might have happened in school if we had not known she was wired differently. We may have thought we had a child with behaviorial problems that just did not want to listen, instead of realizing that Kaitlyn processes things differently.
Sadly, in addition to the changes to the DSM-5, education funding is being slashed across the country. I guess it is easy to manage a budget when you can take funds from educating today the same people that will run our country in the future. In Leon County alone, there will be $554.64 per student funding for the 2011-12 school year. In a class of 14-18, that translates to $7700-$10,000 less that is being spent to properly educate the students in the class.
What does all this mean to the future of early intervention? I think it means that fewer students will be receiving the strategies they need to succeed. I saw a study (which I cannot recall off the top of my head, and I seem to have lost my notes on) that said that something like 55% of children that are diagnosed with an ASD receive their early intervention strategies (occupational therapy, physical therapy, etc.) through their public school. With cuts to education, I have very little reason to think that these providers will feel the pinch, and probably first and hardest; it is almost always easiest to take from those that need it most, and since it is easy to take from education, it is probably that much easier to take from students that need additional services.
I am thankful we know about Kaitlyn’s Asperger’s, and that we found out early. No matter the fate of early intervention at public schools or the number of new diagnoses that are provided with the new DSM-5, we will be able to continue to be proactive in Kaitlyn’s treatment. No change to terminology will change the fact that Kaitlyn has Asperger’s; no cut in school funding will stop us from searching for the best possible treatments for her.