Thursday, January 26, 2012

Anxiety about Changes to the DSM-V

We must bear in mind, then, that there is nothing more difficult and dangerous, or more doubtful of success, than an attempt to introduce a new order of things in any state. N. Machievalli

In my world as a mother of a son with autism, even the smallest of changes can create havoc. Most people are aware that people with autism have difficulty dealing with change. Change has the potential to cause extreme anxiety and outbursts in the individual on the autism spectrum.

My son, now 13, was diagnosed with autism/pervasive developmental disorder not otherwise specified at age 6 under the DSM-IV.
Actually, though if you think of it, change can make anyone nervous. Try to change anything in any institution and see what happens. People will become "concerned" or "worried" and  inevitably this concern will lead to an individual or a group of people opposing the issue.

According to Machievalli, there will always be opposition to change, especially those who feel they have the most to lose if the changes go into effect. In this case, advocates in the autism community are casting a wary eye at the proposed changes to  Diagnostic and Statistic Manual of Mental Disorders, Fourth Edition, (DSM-IV). The main worry is that the changes will make it more difficult for some children to receive special education and/or disability services. (There are other worries/controversies too as outlined in this post.)

This concern was highlighted in a New York Times article that was published January 20, 2012. The title alone is enough to to induce panic in the calmest of all individuals. What advocate wouldn't be concerned when reading the headline "New Definition of Autism Will Exclude Many, Study Suggests"?

Whether or not the worry is warranted, the study and related New York Times article has created a media avalanche and prompted a  press release from the American Psychiatric Association (APA), who publishes the DSM-IV. According to the release, "The proposal by the DSM-5 Neurodevelopmental Work Group recommends a a new category called autism spectrum disorder which would incorporate several previously separate diagnoses, including autistic disorder, Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified."

The new guidelines are currently being field tested and the decision, according to the APA, is months away. The new edition will be published in 2013. Supporters believe the changed guidelines for autism will lead to more accurate diagnosis and thus a better designed treatment plan for newly diagnosed individuals. 

However, due to concern about what the outcomes of the new guidelines will be, it is likely there are far more opponents than supporters of the changes to the guidelines for autism. Before taking sides, it is important to get the basic facts first if one has not done so already. The Washington Post published an article which quotes a representative from Autism Speaks extensively. I've scanned through several including this one and have found that out of all the articles out there about this topic, the Washington Post has the best basic question and answer article.

That said, it will be a long time before we see whether or not there is truly anything to worry about. It could be that the supporters are correct in their assumption that this change will actually benefit individuals on the spectrum. In the meantime, major autism advocacy groups like Autism Speaks and Autism Society are acting as watch dogs. As for the rest of us, according to the APA, they will be accepting comments for a third and final round in Spring 2012. The specific date was not listed. The date will most likely be posted at the this site in the near future.


Cassavaugh Family said...

All of this recent talk has made me reflect on something. Our children with ASD generally struggle with change and transition as you have stated. But as a parent I find that I have what I'd call ASD induced anxiety. When I see changes and potential for change that could affect my child, where there are unknowns as to how things will play out, I stress. I think it will be interesting to see how this plays out. But it doesn't stop at DSM V. How will other groups react to this? As you know in Michigan a medical diagnosis is not used to secure public school services. So would this impact how the schools go about making their own determination? I think we have several years ahead with some interesting waves to ride. I hope they all bring us to the shoreline.

Accidental Expert said...

While I am in favor of redeveloping criteria for autism, I am not in favor of what has been done. One researcher estimated that up to 75% of those with Asperger's Syndrome and 85% of those with PDD-NOS would be excluded using the new diagnostic criteria. This is a huge gap and does not address the epidemic, instead denies services to the many that need them.

Blue Girl said...

I agree with Accidental Expert. It appears these changes are just designed to deny certain children various services. It appears to be much to deep a cut to be accurate. Denying the problem doesn't make it disappear.

Katie Saint said...

As a therapist I share your concerns. Criteria changing is already making it more difficult for my clients to qualify for services. It puts us in a difficult spot where we have to show progress but if we show too much the services get booted.

linda c pressman said...

i have 2 children with autism and i have put a petition up to try to stop these changes and i have already talk to my state rep who is going to help me in my fight and a congressman has also responded to my plea if you want to check out my petition its

Anonymous said...

Hey, i found that for the Autism Awareness Month, maybe it'll be of some interest to some of you. It's about a french initiative that shoulb be followed :

Nowadays, in France, 650.000 individuals are affected by autism, and it goes up to 2 millions if you include their close family members…
Condemned by the European Council in 2004, France is still very late in the area of research and adapted care for autism.

With the promotional films called “Les Electeurs” (The Voters), VAINCRE L’AUTISME calls on the French government, the politicians and the public. Autistic people have been left for a long time on the fringe of society. They still suffer from legislative, political, administrative and social discriminations.

VAINCRE L’AUTISME asks for a parliamentary commission to study autism in France, as well as an economic study on the cost of autism in France, and a specific legislation, adapted to the peculiarities of the autistic persons’ needs. VAINCRE L’AUTISME also stands up for the creation of the Autism General States, a moratorium against Packing and a ruling against unsuitable cares.

In 2012, every French autistic individual and his/her family will take into account the politicians’ commitment before voting.

Check the videos on YouTube: and