Not Apathy, But Weariness: New Numbers, Same Dance

The Canary Party's Ginger Taylor has broken the embargo (courtesy LBRB) and revealed the new 1 in 88 rate that the CDC will be releasing (yes, I guess I've broken it to, except I wasn't given the embargoed information). Age of Autism has a piece on the Canary Party revealing the new number, so it looks like the gang's all together. All we need to make it complete is Orac to cover it, and Liz to start collating the posts on the new statistics, and it will be like old times.

Wait, we need outrage on one side about the numbers as proof that there's a horrible tsunami coming our way. And we need folks blaming the "bloated vaccine schedule." Oh, the Canary Party already did the second. I'm sure Anne Dachel will do the former. Then we need people writing that this is just improved counting, that the kids were always autistic at that rate and there's nothing to see here. Cue the nasty posts and the name calling. And don't forget the charged rhetoric on all sides designed to push their agendas. Autism organizations will leap on the new numbers about the increased cost of autism and use that to whip its supporters into a frenzy of giving.

And I read these things and I sigh. It's not because I don't care, but I think I grow weary of seeing the same things  playing over and over and over again, with little constructive change occurring.

I don't know if the increase in numbers represents a true surge in autism or reflects more kids being diagnosed. You know, like the surge in ADHD diagnoses. I don't see the same level of fever-pitched histrionic rhetoric about the tsunami of ADHD kids reaching adulthood. 1 in 10 kids are diagnosed with ADHD and there's considerable overlap in symptoms in ADHD and autism. Some professionals ignore the DSM and co-diagnose the two conditions, but the symptoms in ADHD are accounted for in autism--the inattention, the impulsivity, and the hyperactivity.

I'm in the trenches, working my butt off with my three kids, who are working their butts off, to help them be the best thems they can be, to find workarounds for those gaps and challenges that cause them serious roadbumps, or where we can't even do that, to not see those gaps as making them less than those who don't have them.

We all have issues; some more than others. Neurotypicality is a myth and the denigration of neurotypicals is just as bad as the denigration of others with neurological differences. Don't think that NT is a myth?

16% of kids in school have a neurological difference causing learning difficulties. The NIMH has a list of disorders and their prevalence and cost. "Mental disorders are common in the United States, and in a given year approximately one quarter of adults are diagnosable for one or more disorders. While mental disorders are widespread in the population, the main burden of illness is concentrated among a much smaller proportion (about 6 percent, or 1 in 17) who suffer from a seriously debilitating mental illness." And that's just adults. Children: "Mental disorders are common among children in the United States, and can be particularly difficult for the children themselves and their caregivers. While mental disorders are widespread, the main burden of illness is concentrated among those suffering from a seriously debilitating mental illness. Just over 20 percent (or 1 in 5) children, either currently or at some point during their life, have had a seriously debilitating mental disorder." And we're talking serious, not those who are less impaired.

So I'm not inclined to freak out about these numbers. I don't dismiss them either, but we've got to (as a society, as professionals in the medical, psychiatric, and psychological fields) get better at naming things, defining them and sticking to that definition. As long as the APA is going to frak around with what autism is and professionals are going to inconsistently apply the criteria, as long as families have unequal access to health care (including the diagnosing of neurological conditions), we're not going to know what the real picture is.

I'm not inclined to fall for the assumption that all families dealing with autism are devastated, as it's just not true. Some families are undoubtedly financially devastated because of severe autism, but severe autism is not the lion's share of diagnoses being given.

I'm not apathetic. I have empathy in abundance for families and individuals struggling, but don't expect me to go to extremes of emotion over the latest round of numbers. That doesn't create change. We need to not freak out--we don't need heights of emotion. We need calm resolve to do the hard work to create real change in the real world. We need better training for parents and caregivers, more effective education (job related, especially) for those with autism and other neurological differences, and we need companies who respect the value and abilities of the disabled to pay them an equal wage for an equal job (see Business Week for a serious fail).


kathleen said...

"real change in the real world" YES!...*sigh* it is a very different place than online...I love how you put a time line to this-i.e. who is going to do what-when etc. I am not however, amused enough to watch it for the fifty billionth time though...

Elise said...

Agree with everything...read that article OMG...so much work to do it boggles the mind

farmwifetwo said...

My family Dr told me once that anyone could be diagnosed with anything using the DSM IV. So IMO, it needs a major overhall and I hope the new definitions show true values, not those that "might be".

ADHD is one that has been in the news a lot. My ret. Ped long ago - I asked about the dual dx's - told me that it was one or the other and they did overlap. I suspect that many people would have medicated my eldest son during the first 6yrs (6 to 8 he was on Risperdal) and the last 4yrs. I have journals full of the issues, meltdowns etc. I wouldn't blame them either because most days I thought about it. But we waited until it was "wrong" (started today). He went out the door saying "but I can't tell anything is different" and probably at the starting dose there won't be any changes... Adderall is a weaned in and out drug.

I truly believe many are diagnosed that shouldn't be or are incorrectly to fit into what services there are. The eldest being one of those - and at 8 (these numbers) would have still been dx'd ASD but at 12 is not. BUT, at the same time we got services that are not available to those with ADHD. The same services those with ADHD require.

The only way to change it is to actually teach children as individuals... not a label. That isn't going to happen unfortunately.

MJ said...

" You know, like the surge in ADHD diagnoses"

Minor point but I believe that ADHD stopped growing and leveled out a little while back.

But, depending on the exact real numbers (not ones whispered by a little bird) and the years that they are for, there might be a consistent pattern of grown in the CDC's numbers for the 2000s that doesn't show any signs of slowing down.

If the real figure is 1 in 88 and that is for eight year olds in 2010 then there is about a 10% year-on-year increase in the rate that has held more or less constant for a decade or so.

K Wombles said...

"Case counts of attention deficit-hyperactivity disorder (ADHD) have risen by nearly one-quarter in the past decade, but whether the increase was real or an artifact of more aggressive diagnosis and reporting remains uncertain, the CDC reported.

Researchers at the CDC's National Center for Health Statistics (NCHS), culling data from the National Health Interview Survey, found that the percentage of children who had ever received a diagnosis of ADHD had increased steadily from about 7% in the 1998-2000 period to 9% in 2007-2009.

The findings were reported in NCHS Data Brief No. 70, released Thursday, with Lara Akinbami, MD, listed as lead author."


MJ said...

Well, shows you what I know about ADHD. The last time I looked up the numbers a few years back they said the growth had slowed down. I guess I should have checked again before saying anything.

Do I get brownie points because autism is still growing relatively faster than ADHD?

K Wombles said...

:) Sure.

The biggest problem we're facing when it comes to counting the prevalence is that the new criteria will screw up any counting. We'll be comparing apples and oranges. And that is frustrating.

It's important to get a true handle on the severity of autism that's present, whether that's increasing or if it's been increasing because the milder end of the spectrum has grown so.

Anonymous said...

Great post Kim, thank you for saying what so many of us are thinking.

Lori said...

Thank you for this post. You put into words my exact thoughts. Hang in there!

Lori D.

Phil Dzialo said...

Just to let you know that this is the most reasoned post regarding the "new numbers" that I have read anywhere. Thank you so much...

K Wombles said...

Thank you, Lori and Phil. I appreciate it!

And Orac has spoken: http://scienceblogs.com/insolence/2012/03/the_antivaccine_movement_resurrects_the.php

Liz Ditz said...

I actually DID have a draft post listing various reactions...but by Saturday it didn't seem worth it.

This is a great post, Kim, and I thank you.

One of the things that struck me as I dug into the report is that (depending upon the state) as much of as 1/3 of the children reported as autistic didn't have a previous autism diagnosis. It's not clear if the children had been identified with other issues (such as learning disabilities or ADHD). I just don't know.

The ADHD numbers...I really wonder about the role of direct-to-consumer marketing of ADHD medications in this respect. I don't have a conclusion, but just a wonder.

I know from digging into the available data on my local k-8 district, compared to another district with greater resources, that learning disabilities (such as dyslexia, dyscalculia, and dysgraphia) are still underdiagnosed and under-remediated.

K Wombles said...

Sorry this sat in moderation for so long, Liz. Didn't realize it was there--blogger glitch.