Well I saw this one coming. I was actually asked in an interview about a month ago what I predicted to be the biggest news story of 2012 regarding special needs children or research and boy did I hit the nail on the head….. the upcoming DSMV.
This week has been a frenzy of news media overload inducing fear and panic especially among the autism community. Is it justified? We will just have to wait and see. One of the ways we can decide is by listening to the two men at opposing ends of the table and hear their concerns and their views.
One such man is Dr David Kupfer, the chair of the DSMV task force, I am looking forward to hearing what he or a representative of the task force will share with us when I interview them in an upcoming interview. What are the changes and what is the science behind them? How will revisions affect our children, their diagnosis, their accommodations, their treatments, therapies and coverage?
I have had the pleasure of interviewing and continued communicating with Dr Allen Frances the Chair of the DSM-IV Task Force a man at the center of the controversy over the upcoming changes. Is this new news? Not unless you have been living in a cave. For the past year I have done interview after interview with the worlds most respected psychiatrists and mental health foundations and in most have discussed how the upcoming DSMV will impact specific disorders. The concern was universal, the confusion palpable. Dr Frances will return to The Coffee Klatch Wednesday and explain his opposition to the changes being made. To me, he is a man with some regrets, a man who did what he thought best at the time, who saw how misinterpretation could lead to misdiagnosis, how what was intended could be disregarded.
These are good men trying to do good things. The enormity of their work and responsibility to Americans is…. well… enormous. These interviews are not intended to sensationalize but to educate, inform and quell very nervous parents.
Autism is not the only disorder parents need to keep an eye on. Juvenile bipolar disorder, the new diagnosis of TDD Temper Dysphoric Disorder and SPD Sensory Processing Disorder are all up for revision, some news is good some, well, let’s just say just as with autism we will have to wait and see.
The DSM is one of the most influential manuals in the world. It determines diagnosis, labels, treatment and funding for our children’s disabilities. In my mind it is hard to imagine how any manual could possibly take into consideration all the variables that we see in our children. How can children with such dimensional aspects to their disorders be so easily defined? How do we ensure phenotypes and subgroups are clearly represented in criteria. This is no easy task but a very important one to get right.
As I have always said, getting a diagnosis is important, it is what will get your child accommodations and health coverage which is vital but please understand that it is otherwise just a label. Getting a diagnosis is often a validation for parents that what they were feeling, what was in their gut was right. It gives them a place to start on their long journey. As mentioned above, with such dimensional aspects to our special kids there is no one size fits all diagnosis and no one size fits all treatment. I think it best to treat the symptoms and challenges and not the diagnosis or label. Labels are for designer clothing not children, do not get hung up on them. When you see your child do not see a diagnosis or a label see that terrific kid with all their competencies and gifts.
Let’s all take a breath, listen to the facts and make informed educated decisions.
Wishing you all strength and calm.