Debating About Changes to Autistic Spectrum Diagnoses in the New DSM-V

The following debate originally took place on my Facebook wall, upon my post, “Estimates Indicate Redefinition of Autism Within Fifth Edition of DSM Manual Will Significantly Affect Diagnosis Numbers“…

Rayn: According to three separate research estimates, under the proposals of the new DSM V, due out in 2013, up to 75% of those previously diagnosed as having Aspergers Syndrome will no longer qualify as being on the Autistic Spectrum, as well as up to 85% of those with PDD-NOS…

Redefining Autism:
http://www.nytimes.com/interactive/2012/01/20/us/redefining-autism.html

Jessica G.: So much fear mongering. So much. The research was based off of old guidelines, and old articles. The core of autism isn’t being changed at all. I’ve posted lengthy discussions on this already, people need to not worry so much.

Rayn:  whole thing has been COMPLETELY POLITICIZED, through and through. To begin, the Autistic Spectrum doesn’t really belong in the DSM, in the first place! It is a neurological condition, not a mental illness! (I wrote about this in my 2009 blog on the topic).

Second, few are discussing the impact that fully dropping the terms “Asperger’s syndrome” and “PDD-NOS” from medical jargon will have on the autistic community. Many strongly identify with the aforementioned phrases, personally, and among their peers, so they will not want see them go. Much of Autistic cuture is based around them, and large numbers will fight hard to keep them alive. Even more will battle against the next logical step for neurotypical society: ever-increasing popular usage of the degrading, inappropriate eugenicist phrases, “high-functioning” and “low-functioning” to distinguish Autistic individuals from each other. This will result in a large backlash from the Autistic community. Also, if you’ll note, with the new terminology, Asperger’s SYNDROME will now officially become a DISORDER, too – something that will not be embraced by all parties, either! And, of course, the very presence of the new definition within the DSM, much like the old ones it now covers, still implies the ridiculous notion that a “cure” is the always-desired route for a hard-wired neurological condition! Ha!

Finally, with the New York Times article referencing a sharp reduction of “skyrocketing” numbers of autistic diagnoses, this appears to be more about denial of available services than anything else!

Here are the proposed DSM-V changes:
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94

There is a tab on that same link for DSM-IV definition for Autistic Disorder, so that you can read it right after. But, it can also be found here, as well:
http://www.autreat.com/dsm4-autism.html

Now, here is the DSM-IV definition of Asperger’s Syndrome:
http://www.autreat.com/dsm4-aspergers.html

DSM-IV PDD-NOS:
http://www.pervasivedevelopmentaldisorders.com/dsm-iv.htm

As far as general symptoms go, you are correct, Jessica. The core definition for the new “Autistic Spectrum Disorder” in the DSM V combines most features of “Autistic Disorder,” “Asperger’s Syndrome,” and “PDD-NOS” in the DSM IV. However, let us not overlook the new and ominous criteria (D), requiring that the new list of “symptoms together limit and impair everyday functioning.” This factor will most assuredly effect the rate of diagnosis, by far, which will become fleeting for those individuals who are able to sucessfully manage their Autistic symptom within our neurotypical society! Like I said in the beginning: it’s POLITICS! And, the Autistic community is caught right in the middle, like always!

Jessica G.: Politics influence everything, that’s nothing new. And it’s always been severity that influences someone getting a diagnosis or not…Someone who has ASD traits but it doesn’t affect them at all generally doesn’t go seeking out a diagnosis, right?

Rayn: Yup. Nothing new, for sure. One of the biggest problem with today’s society, really… But, severity and ability to mask symptoms are two different things, in my opinion. And, someone with ASD traits should not expect to move beyond diagnosis for a hard-wired neurological condition simply because they have mastered the art of acting neurotypical. That’s illogical, and unscientific…

Jessica G.: Well yeah, but even being able to mask it you’ll still show some symptoms that are easy to spot by a trained eye. I’m able to mask most of it around others but I’ve had people spot it right away that I was trying to fake eye contact n such.

Rayn: That might be true for some, but others may have better acting skills. Females, especially, are under diagnosed due to a natural ability to mask their symptoms, while also often being mislabeled as “shy.” Personally, I was not diagnosed as being Aspergian until I was 26 simply because my symptoms are masked by severe social phobia and selective mutism… And, I wasn’t even looking for a diagnosis. I had simply decided to try cognitive behavioral therapy, as a new approach to my social issues.

Even more recently, right at the end of 2011, now 31 years old, as part of a study I took part in, I was evaluated by the professionals at Mt. Sinai Seaver Center in NYC, and the Autism Diagnostic Observation Schedule (ADOS) identified in me symptoms consistent with the more “severe” “Autistic Disorder,” instead. So, it would seem that an individual’s diagnosis story might not even end with a very late first one in adulthood…

Jessica G.: I was considered ADHD and ‘shy’, a ‘good kid’, and quiet my whole life. I had one friend that was the mother-hen type, who took in anyone different and clung to them and introduced all her other friends to them. I was ok til middle-high school, when it became too hard to hide and try to fit in. But I lack the means or money to seek therapy of any sort to try and help right now.

Rayn: Hmmm… Perhaps it’s time to form a self-advocacy group with some of the other Autistic individuals in your area. There are no ASAN chapters or GRASP groups in your neighborhood at the moment, but perhaps you could try Meetup.com for now.

Here’s something promising! Looks like some of the members are trying to set up a first event, too, so the timing’s great:
http://www.meetup.com/Aspergers-Adults-Group/

Jessica G.: Oh sweet, last time I checked meetup nothing was even close to being planned. I’m rather shy and afraid to meet people, but maybe this can be an option with a bit of help from my mate.

Rayn: No doubt! It’s being co-organized by a 26-year-old Aspie who’s “very social phobic” and his mother. It sounds like a great environment to get you both started! You may very well become an asset to the group! 🙂

Kate P.: R u a teacher? It seems everyone’s a teacher n they say kids in their class have aspergers add or something else. I think these r made up things never heard of them years ago n now many kids r on heavy meds

Jessica G.: Actually aspergers and autism have been “around” for many years- autism was called something Along the lines of kanners syndrome back in the early stages. Aspergers was found by Hans asperger and autism by Leo kanner. You should do your research… It’ll really benefit you and anyone else who thinks its just some new craze the drug companies made up. FYI ive never been on medication for any of my “problems” and sometimes I wish i had medication as an option to help with some of my symptoms.

Jessica G.: http://www.webmd.com/brain/autism/history-of-autism

Rayn: Actually, I’m an Autistic Self-Advocate, Kate. 🙂 I can assure you that Asperger’s syndrome is a real neurological condition, hard-wired to the brain. It is NOT a chemical imbalance, so drug therapy is illogical.

But, I understand your point about the ABSURDITY of DRUGGING CHILDREN, as well as the recent trend towards creating bulls*t illnesses like ADHD and the ever-laughable “oppositional defiant disorder.”

Jessica G.: I wouldn’t say ADHD is a BS illness seeing how badly it affects my bf day to day and seeing how he’s struggled throughout his whole life. But I do not think that medication alone is the answer to any psychiatric or neurological condition . I believe in using medication if needed to bring the patient to a level where therapy can take over and further assist in teaching ways of combatting the problems and working through situations that arise as a result of the condition

Kate P.: I think I have add I lack concentration in a big way lol aw sorry u girls suffer I’m not sure what any of these things make u feel I kno there are diff types of autistics I hope it Gets better 4 u ! I get anxiety n panic attacks out of nowhere it’s awful

Jessica G.: I blank out or Zone out frequently, sometimes getting lost in random thoughts out of nowhere. It’s more than just “I can’t focus” it’s “my mind will not let me focus on one thing without getting sidetracked 2 minutes later”. A typical moment for me is something like this: listening to someone explain something to me even if it’s important > can’t make eye contact so eyes wander around the room > random flier grabs attention (let’s just say its pizza hut special for certain discount ) > mind wanders from listening to person speaking to thinking about how much money difference it is to get a large pizza vs a small > then mind jumps to an episode f “hey arnold” because pizza somehow reminded self of that. If I mange to notice that I zoned out then i try to fill in the pieces of conversation I just missed … Usually doesn’t work too well since I normally don’t notice I zoned out until it gets abnormally quiet around me.

Jessica G.: And for another example … While writing that post I got distracted twice from my original intended reply lol. My bf is worse… I’ve learned coping ways at least.

Kate P.: Interesting I zone out to but then refocus I feel sick lots dr says it’s anxiety . Sorry u go through this n I hope theres a cure xo

Rayn: Personally, I think that the symptoms of ADHD sound a great deal like sugar or caffeine addiction… perhaps even some other neurotoxin. But, even if it is not a substance causing them, do the behavioral issues described by this condition really qualify as a “mental disorder” or “mental illness”? NO! That’s where I call “bullsh*t.” I do agree, though, Jessica. To use medication alone is useless.

While I gratefully thank you for your concern and sympathy, Kate, rest assured that I don’t at all suffer from my autistic condition, but rather, from lack of understanding by my neurotypical counterparts, who just so happen to make up the majority on this planet. However, as Autistic culture continues to grow and flourish every day, awareness about neurological differences, and acceptance of Neurodiversity, will only continue to increase! 🙂

Jessica G.: I can vouch for two people that it’s not sugar or caffeine addictions for us. I never have caffeine in this house because it works opposite for me And puts me to sleep fast . I drink maybe one soda a month if tha, same goes for my bf since we live together. Sugar is a harder one to avoid since its in a lot of food but I’ve fasted for a week before and felt no withdraw symptoms at all. Yet my ADHD symptoms were still prevalent