Yesterday morning, I wrote that the The Canary Party's Ginger Taylor broke the embargo(courtesy LBRB) and revealed the new 1 in 88 rate that the CDC released later that morning. Age of Autism has a piece on the Canary Party revealing the new number. Cue the 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. Just wait for the nasty blog posts and the name calling to start. 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. Some organizations, like Autism Speaks, will actually push the new numbers to get people to give $188. You know, 1 in 88? Exploiting statistics for financial gain is the name of the game, after all, and it's what they do--the more they get the more they give to research. Imagine if that call for money was about helping actual families now. Talking about family devastation and then asking for research money rather than money to help actual families right now misses the mark by a wide margin.
And I read all 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 in the online community, with little constructive change occurring. Occasionally, I growl, but mostly I grow tired of the lack of both constructive exchanges and effective changes to make lives better.
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. Around 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 that occurs in some circles online is just as bad as the denigration of those with neurological differences. Don't think that NT is a myth?
16% of kids in school have a neurological difference causing learning difficulties (add in dyslexia, which as much as 15% or more of the population deals with, and increases in ADHD and autism, and 16% is a conservative estimate). 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 seriously impaired, truly disabled by their conditions, not those who are less impaired and manage to function fairly well with some assistance and accommodations.
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, and 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, either, as is being pitched, as it's just not true. Some families are undoubtedly financially devastated because of severe autism (and some are certainly emotionally and spiritually devastated, in part because of the lack of supports), but severe autism is not the lion's share of diagnoses being given.
I'm not apathetic, either, despite my refusal to respond to this emotionally or to feel impelled to give generously to autism organizations simply because of a change in numbers (there's more than a bit of the "sky is falling" mentality going on in autism-land). 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).
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