This recent New York Times article, states that the upcoming revised diagnostic criteria for autism will exclude many of those previously diagnosed on the high end of the spectrum. There were many comments on it on network news shows this morning, one of which I caught about half of as I turned on NBC this morning. I went online to view it in it's entirety and found this original article.
I knew the highly-anticipated DSM-V (Diagnostic Statistic Manual, Version V) was due to be released this year, but I did not know the time frame. It is easy to get up in arms and speculate ahead of time, but the more I read about it, I don't have many concerns...at least for our Morgan.
Though she has an official diagnosis of PDD-NOS, I think she falls pretty solidly on the spectrum, though possibly on the higher end. I think she received this diagnosis due to the fact that she did not have certain repetitive behaviors that are required for classic autism. As she has gotten older, I know some of those behaviors are there, but they are not as obvious as they could be in other cases. No, she does not constantly flap her hands or spin in circles...but there are other things she does repetitively or as a so-called "self-stimulatory" behavior that would qualify. It was just not seen that day by the professionals that diagnosed her. There are also so many traits she has and the specific way that her mind/brain works that fits the autism "mold." Also, as children get older, they tend to show traits more clearly...that is the reason that some professionals will not officially diagnose before a certain age (per their discretion). This is especially true for those children on the higher end of the spectrum as the signs of the disorder may not be obvious until later.
At this point I'm going to hope that the new criteria will simplify the diagnosis process and make it easier for professionals to decide who does and doesn't fall on the spectrum. I suppose this means I am cautiously optimistic. The criteria will not be fully released until late Fall, so we have much more time to anticipate this event. I also agree that folding Asperger Syndrome and PDD-NOS into the overall Autism Spectrum Disorder is a good call as it reduces a lot of confusion.
I think it is also important to emphasize the last part of the NYT article, in that in testing the new DSM, they are using data from almost 20 years ago. There is so much more awareness and knowledge at this point that when current professionals use the new criteria, the statistics will probably look different. I'm willing to bet that the 85 percent in the area of PDD-NOS is much lower, meaning more of these children with this previous diagnosis will remain on the spectrum.
Aside from this, my biggest concern is the fact that the school systems struggle to meet the needs of those who do qualify. Even with less children meeting the criteria, many school systems/districts still work more to resist services than provide them. We've only encountered this in a minor way here (thank goodness), but I know there are many districts who don't have near the programs that ours does. But...I could go on and on about this.
Well, I will a bit more. In thinking more about those children who may no longer qualify for services with an autism diagnosis, there needs to be acknowledgement and previsions made, in some way, for their differences in learning styles. These kids may no longer fall on the spectrum, but that doesn't mean they will be successful in the classroom or in life. There is something that is slightly "off" from what we call "typical," that is why they were put through some sort of diagnostic process in the first place. As an example, though not associated with the autism spectrum, I have a friend who has a learning disorder involving reading comprehension. She struggled in school, but accommodations were made to assist her, such as giving her extra time on tests and use of audio tapes of her textbooks. Though she had many challenges, she now has a Masters degree in Speech and Language Pathology. This is where I hope these children who are no longer "on Spectrum" will still be allowed accommodations per their specific need. They will not be left to their own devices, but set up to succeed. So many classrooms are set up for a "typical" learning model which not all children will succeed under. It's not that these children need a different classroom setting, but they may need some extra attention or assistance in the class they are in. Of course, my kids are not yet in this type of class setting yet, so I understand I may be somewhat ignorant in this area (I do not want to make assumptions, as this may be the way many districts work with kids from Kindergarten on up). I'm just thinking of those kids that fall in the grey area of this new diagnostic model. Though the new model may be simplified, some children will be at risk of falling through the cracks.
I'm sure there will be much more to say as we get closer to the official release of this revised diagnostic model.