You might have seen, read, or heard something about the recent debate underway in the autism community about some proposed new criteria for diagnosing autism. Most notably for this family, these proposed changes would possibly eradicate Aspies' existence from the autism spectrum.
I am going to rough in the basics before sharing my open letter to the American Psychiatric Association (APA) with you. Please know, however, that this is a very rough sketch of the basics and background. If you simply Google "DSM-5 debate autism," you can find a lot more (read better) info.
In a nutshell, the APA publishes the criterion used for diagnosing, among other things, autism in its Diagnostic and Statistical Manual of Mental Disorders (DSM). These criteria, then, become the working definition of "autism." The DSM has undergone various editions in its tenure, and autism wasn't actually even added into the DSM until 1980 (even though it surfaced in scientific literature in the 1940s). Asperger's Syndrome wasn't added as a separate diagnosis or category on the autism spectrum until the DSM-IV in 1994.
Boiled down to the simplest and shortest explanation, the proposed DSM-5 does not have a separate code or category for Asperger's Syndrome. The proposed changes in the DSM-5 purport to include the entire spectrum in a single more concise code under the rationale that ASDs share a common set of behaviors. While Asperger's Syndrome is mentioned specifically in the APA's rationale or notes about the changes, it is not listed anywhere in the DSM-5 itself. It's as if Asperger's has been eradicated from the face of the DSM-5 and the spectrum (so, too, has PDD-NOS).
In another nutshell, the APA rationalizes that these changes are necessary to produce greater reliability in ASD diagnosing. The APA purports that greater reliability is needed because there's been too much variability across sites (read people who are doing the diagnosing) and over time (read the autism epidemic that has been so repeatedly reported in the past several years). The APA further rationalizes that these variations or inconsistencies were driven by too much of a focus on "severity (of symptoms), language level or intelligence rather than features of the disorder."
What we have now then are some proposed changes that would wipe out a disorder or two from the medical diagnosing rubric used by docs, an acknowledgement by the APA of too much variability in diagnosing, and a qualified/calm concern by families who live with high-functioning autism. These folks, us included, want to know what the hell happened. Some even want to know what this means for their kids and their kids' services and futures IF these proposed changes go into effect.
As an aside, I am clear about our Aspie's future and services. She has autism. A gold-standard diagnostic assessment at a leading autism facility has made that plain. She is doing well, which means that she is largely able to conform to or meet the educational and social expectations in her life, because she has received for six plus years and continues to receive multidisciplinary, consistent, and continuous support at home and at school. At home, nothing changes with this new DSM-5 IF it goes into effect. At school, we believe nothing will change.
How can we believe that, you ask? The folks at 4A's school are super clear about who she is and what she needs to succeed. That's not going to change with the DSM-5. What happens if we move or when she moves to middle school, you ask? Will her dx remain intact? 4A actually has two diagnoses. The first is a medical diagnosis of Asperger's Syndrome that was established by the aforementioned gold-standard assessment. We don't believe that the DSM-5 changes 4A's medical diagnosis because it was made at a time when the DSM-IV was in effect. Even if a new assessment became necessary under the DSM-5, we believe 4A would still receive a medical DX of autism because the symptoms she displayed in her very early years would meet the DSM-5 criterion.
4A's second diagnosis is an educational diagnosis of autism. That educational diagnosis is based on the medical one, but they are separate and distinct. The DSM-5 doesn't (theoretically) touch that educational one. (This is an issue that deserves a lot more stringent treatment on this blog, and it'll be in an upcoming "holy grail of DX" post, I promise!) In fact, an educational diagnosis is really, IEP-wise, the true basis for educational services. A medical one is somewhat like gravy for IEP purposes.
Most most most importantly, we have documented volumes of PROOF about what works for 4A. The diagnosis isn't what treats the autism (this, again, is something that I plan to tackle in my upcoming "holy grail of DX" post). The supports and interventions are what treats the autism. Call it what you like, Asperger's, autism, whatever, certain supports work for 4A, and we have proof of their efficacy. Interestingly, as we learned earlier this year in reading, even having an IEP that lists and mandates these supports doesn't mean that a teacher is going to use them. I'm of the opinion that ain't no crazy teacher in her right mind wants to try handling 4A without them. If someone were crazy enough to try, I figure she'd last a week or two TOPS before she threw in the towel and came crawling back to the huge 4A rule book we've created over the last six plus years.
And, here's the worst case scenario (and, again, I know it first-hand because we lived it in reading this year before the big switch). Suppose we loose our IEP after the DSM-5; it's not likely, but do the hypothetical with me (good law school student that I used to be). IEP gone equals no basis to demand accurate supports (those ones on which we have volumes of proof). When 4A doesn't have her supports, as she didn't in reading earlier this year, she gets shitty grades and she displays passively disruptive and oppositional behaviors at school. She's described as minimalistic, limited in her thinking, reluctant, whiny, oppositional, etc. So they think she's a pain in the ass. Oh well. We can either live with that and all of the aggravation it causes at school and at home, OR we can pull her and homeschool her. I ain't afraid to do it, no matter what the passerby says about home schooled kids being screwed up (which I, for the record, disbelieve). I can't possibly produce as shitty of an outcome educating her myself as a real educator teaching her without her supports could produce.
So, it'd suck, of course, but it's not likely, and we could survive it. Remember, "at first I was afraid, I was petrified," right? Ms. Gaynor was right. We will survive!
(These latter issues of what happens to the services of a DSM-IV diagnosed child IF the DSM-5 goes into effect are nicely addressed and quieted, I think, in a recent open online forum presented by Autism Speaks. It's a must read for families who live on the spectrum.)
So rough sketch and nutshell of what's going on established, here is my family's letter to the APA about these proposed changes.
To: The Neurodevelopmental Disorder work group of the DSM-V Development Committee
From: Our family
Our family lives with autism. Specifically, our eldest child (currently age 8.5) was diagnosed with Asperger's Syndrome in 2008. We have three younger neurotypical children, as well.
4A underwent medical diagnostic testing for autism at (unnamed medical institution), a leading autism diagnostic, therapeutic, and research facility.
When at 14 months of age, 4A first presented with symptoms of what we now know is an ASD, we, like you, were very concerned with getting a reliable and accurate diagnosis. For our family, that answer needed to come from the most credible place so that it was reliable for us and 4A's eventual educators. Because autism experts consider the neuropsychological profile to be the gold-standard for diagnosing autism (blog readers: I will address this in the "holy grail of DX" post), we pursued this at (unnamed), a leading autism facility.
Even after three plus years of intensive intervention (behavioral and pharmacological), which worked together to reduce the severity, intensity, and frequency of 4A's symptoms, the neuropsychological profile still confirmed a diagnosis of Asperger's Syndrome as defined in the DSM-IV. (CARS also confirmed whereas ADOS was inconclusive; blog readers, this, too, will be addressed in the "holy grail of DX" post).
4A is currently functioning well at home and at school because she has received continuous, consistent, and well-rounded multidisciplinary support for the past 6+ years. Our family will continue these supports whether or not Asperger's Syndrome is recognized by the DSM because we know first-hand that these supports are effective in keeping 4A present in her own life.
While we share your concern with inconsistent and variable diagnoses over time and across sites, we respectfully believe that these issues could and should be addressed without eradicating Asperger's Syndrome from the DSM.
As you know, "Aspies" feel a social disconnect with the world around them due to the neurological impairment with which they were born. We respectfully submit that erasing their existence from the DSM will further impair their ability to connect socially with those around them. So many adult and adolescent Aspies and Aspie families report that diagnosis gives them a sense of community. This community will be impaired if the proposed changes in the DSM-5 take effect.
More importantly (and, yes, I mean more important than that, which is remarkable, I think, because Aspies feeling a sense of community is HUGE given their social neurological impairment), inconsistency of diagnosis across sites can be handled in a more effective manner. If neuropsychological testing, the gold-standard for diagnosing autism, were made available by increased insurance coverage, more credible diagnoses would be obtained. When folks who are not fully qualified to make diagnoses make autism diagnoses, inconsistency is certain. However, many families turn to these lesser-qualified sites for diagnosis because the gold-standard sites and diagnostic tools are unavailable to them due to lack of insurance or incomplete coverage. Surely, increased availability of gold-standard tools and sites is a more effective option than eliminating a group of neurologically impaired individuals from the DSM.
Thank you for your consideration.
And, there you have it my friends. VOLUMES more I could write to these folks, but they're being inundated, and these are the most solid arguments against the DSM-5. There are more, if you're interested.
In particular, some studies show rates similar to the CDC's estimate of 1 in 110 in populations pre-DSM-IV. Basically, there's a group of folks investigating the pre-1980 population (remember 1980 is when autism arrived on the DSM scene) and determining whether or not this population has the same incidence of autism. Here's what they're finding (surprise?!)...the pre-1980 population has the SAME 1 in 110 rate of autism that the post-1980 population has. The difference? Folks with ASD were just not diagnosed before 1980. So, the same amount of ASD people lived in this world before 1980 and after. The only difference? We now know how to treat and identify the folks with ASD. That's a good thing.
It's also been reported that Asperger's and high-functioning autism diagnoses aren't even included in the 1 in 110 number. If that's the case, then any "murkiness" caused by the inclusion of Asperger's in the DSM-IV is really irrelevant since those cases aren't even being considered by the CDC when discussing the autism "epidemic."
It's all very interesting of course, but it's really largely irrelevant in this household because it doesn't change our daily landscape. It would, however, make our Aspie feel even more misunderstood and left behind. For that reason only, I am in favor of these proposed changes falling by the wayside so that the DSM-IV stands, allowing children like 4A their very best chance at life.