New Definition Of Autism? No, Thanks.

by Jenn (eating bender) on January 20, 2012

I rarely find myself ranting on this blog, but there are always going to be moments in life where you have to take a stand one way or another. This morning, I found my blood boiling in opposition to an article posted on the New York Times: New Definition of Autism Will Exclude Many, Study Suggests.

I encourage you to take a moment to read the below and share your thoughts.


Here are the key points of the article:

  • The definition of what it means to have autism is being reassessed, and the results could significantly narrow the criteria for diagnosis.
  • The changes could especially affect people who are high functioning or who have Asperger syndrome, not only emotionally, but also financially in terms of access to funding and state-backed services.
  • The analysis comes as a result of combing through a 1993 study of 372 children and adults who were among the highest functioning. With the proposed autism spectrum diagnosis now under review, only 45 percent of these people would qualify (though the authors admit that these numbers might be slightly exaggerated).
  • Researchers say the focus would be on diagnosing more “classically autistic” children, who have the severest cases on the spectrum.

Don’t get me wrong. I can understand wanting to analyze past studies in an attempt to understand why the statistics have skyrocketed in recent years. But using past studies as a way to more narrowly define autism for future generations, thereby making the statistics look more favorable while failing to deal with the real issue? That doesn’t sit well with me.

There are many reasons to be upset with this article that are not limited to the fact that my brother is considered high functioning and could very well be negatively affected by the outcome of this proposal. We are talking about excluding people from getting the aid they need and making them question who they really are – that’s a hard battle for any individual to go through.

All for the sake of what Dr. Volkmar, the author of the analysis on this new proposal, claims would “end the autism surge” and “nip” the skyrocketing rates of diagnosis “in the bud.”

Sure, you would nip those numbers in the bud, Dr. Volkmar, and save a bit of cash while doing so. But at the cost of exclusion? I think that is a recipe for disaster.

Here’s an idea: let’s continue to search for proof as to why there ARE skyrocketing rates rather than trying to cover our tracks by making it so that kids don’t get diagnosed in the first place.

Also, I didn’t know there even was such a thing as “classically autistic.” Don’t insult the intelligence of the families and individuals who know what autism looks like. Kids and adults with autism are as diverse and unique as the snowflakes that are falling outside my window right now.

It’s called a spectrum for a reason.

Rant over, but I would love for you to read the article and share your thoughts.


1 Megan (Braise The Roof) January 20, 2012 at 10:18 am

I agree with you. There is also some autism in my family, and my cousin’s wife actually volunteers at a school that is solely for autistic kids (her kids attend the school). Makes me worried about what would happen to attendance that school if there were new parameters for diagnosis. I also think that we have a huge problem in our country with addressing the effect rather than the cause and I couldn’t agree more- why not use the money from studies like this and actually study why more and more kids are being diagnosed? THAT’s how you save money in the end.

2 Jenn (eating bender) January 20, 2012 at 10:35 am

You are so right. My brother actually attends a school solely for kids on the spectrum, and I would also shudder to think what would happen to the attendance. And your thoughts on addressing the effect rather than the cause? Spot on.

3 itwillneverwork January 20, 2012 at 10:25 am

The only reason that I’m glad they are looking at the diagnosis again is because of the fact that so many types of conditions are currently grouped as an ASD. I’m not an expert in these diagnoses. My son was PPD-NOS, and now I guess fits the “classic autism” diagnosis. I’m horrified that by restricting a diganosis like this that it would give an opportunity for “cost cutting”. I can understand trying to differentiate the various disorders as an exercise to understand what is most likely the large variety of causal factors leading to these diagnosis. Perhaps some conditions should be treated differently, or maybe can be prevented differently. However, the idea of restricting benefit to a “highly functioning” person on the ASD makes me physically ill. Fundamentally, though, I think that if this doesnt result in helping to prevent and treat the problem, then its really a waste of resource. IMHO, of course.

4 Jenn (eating bender) January 20, 2012 at 10:40 am

Thank you so much for commenting and sharing about your son. I’m certainly not an expert, either, but I am as horrified as you are about using this as a potential “cost cutting” measure, and definitely feel sick to my stomach about the potential ramifications. You are so right about the fundamentals — if this doesn’t get to the cause or address building more programs that can help, then it is an absolute waste of resource.

5 Rose January 20, 2012 at 10:34 am

very well written, jenn! I have thoughts but not nearly enough time to share them. thanks for bring this to the attention of your readers – it’s a very important topic that needs to be highlighted.

6 Jenn (eating bender) January 22, 2012 at 1:54 pm

Thank you, Rose! I truly appreciate your support!

7 Judi Nadreau (@JudiNadreau) January 20, 2012 at 10:49 am

I’m afraid tptb are looking at everything as an excuse in cost cutting. If a huge population on longer fall within fundable parameters they have achieved their goal.

My grandson has PDD-NOS. I’m just grateful he is now 13 and has had many years of successful services. I fear what is to come for others like him down the road should all this happen, as I fear it will.

I’ll link you to a couple of Autistic twitter friends I have, Jenn. You may already have them but if not they are good resources.

8 Jenn (eating bender) January 22, 2012 at 2:02 pm

I couldn’t agree more on the “cost cutting” mentality, Judi — and it’s not fair. Thank you so much for linking me on Twitter. Looking forward to connecting with them!

9 Cara (Twinthusiast) January 20, 2012 at 11:14 am

Sigh. It’s all about the money here, huh? Got to love the quote “it will effectively end the autism surge.” Like you said, perhaps we could address why there is a “surge” at all? Maybe they should narrow the definitions of STDs or heart disease or bipolar disorder while they’re at it since those are on the rise too.

10 Jenn (eating bender) January 22, 2012 at 1:56 pm

It truly is, which is what makes it so disheartening. That quote literally made me scream out loud in frustration. It’s so obviously wrong – I just hope it makes for a bigger outcry against this.

11 Maggie @ Say Yes to Salad January 20, 2012 at 9:59 pm

I like “itwillneverwork”‘s reply. I actually don’t know anyone with autism but I do think it’s a huge (growing) issue that needs more research. I think we need to find the root cause of it and work to prevent it from occurring if possible. I feel like all these studies are just to save money and not to actually produce any actionable, helpful results. Sigh.

12 Jenn (eating bender) January 22, 2012 at 2:00 pm

I couldn’t agree more, Maggie. Thank you so much for commenting. It’s definitely easiest to garner support from people who are touched in some way by autism, but to have someone who doesn’t know anyone directly feeling the same way truly means a lot, and is how we can create change!

13 Stephanie January 21, 2012 at 6:17 am

YOU “RANT” was spot on! Thanks for sharing your thoughts with the world…

14 Jenn (eating bender) January 22, 2012 at 2:01 pm

Thank YOU for all you do, Stephanie! I was thinking about you and wondering what your thoughts would be on this one.

15 Susan January 21, 2012 at 10:49 am

Thanks for discussing this. It saddens me to think that people may not have access to much-needed services as a result of these changes. I went to a presentation a while back led by a guy from the Asperger’s Association of New England, and he talked about how much the DSM modifications could negatively affect their clients – not just in terms of funding for their programs, but in taking away the sense of relief that many felt in having a diagnosis that matched their symptoms. He talked about how the majority of these adults didn’t get the help they needed as young people, as the spectrum wasn’t understood and Asperger’s wasn’t in the DSM. He went on to say how reassuring it was for these individuals when Asperger’s finally made it into the DSM. And now to remove it (not to mention the other changes) after so many years to save some money and make people feel better about numbers?? Sad.

16 Jenn (eating bender) January 22, 2012 at 2:21 pm

This is so interesting, Susan — thank you for sharing. It really does have a variety of negative consequences, from financial to emotional and everything in between. It will be interesting to see what the feedback will be as this progresses. My hope is that there will be enough people voicing their dissent that we will be able to avoid something so completely (and, if you ask me, obviously) detrimental to a wide group of people.

17 lovetotrain January 22, 2012 at 2:35 pm

wow thanks for that post and the link. i am studying animal assisted therapy and work with autistic kids. going to have a read right NOW!

18 Jenn (eating bender) January 24, 2012 at 2:30 pm

How awesome that you are studying animal assisted therapy — that is fantastic!

19 Karla January 22, 2012 at 2:53 pm

Amen, Jenn! I could not agree more. I REALLY hope they reconsider the proposed changes very soon and really appreciate you sharing the piece and your thoughts on this important issue! It reminds me a bit of the struggle some patients with eating disorders face when trying to get a bit of coverage for their treatment. Sometimes the classifications in the diagnosis books can play a huge role in medical care/insurance—which isn’t always a good thing…

20 Jenn (eating bender) January 24, 2012 at 2:30 pm

Thank you so much for sharing your thoughts, Karla. It’s definitely true that diagnosis is a tricky business — and I just sincerely hope that this won’t hinder the ability of so many deserving kids and adults to receive the help/coverage they need!

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