Tuesday, April 10, 2007

Health Crisis or Crisis of Opportunity?

I started writing this as a reply to Harold Doherty's blog on the impending health crisis brought on by the increased diagnosis of autism and the lack of urgency in both the US and Canada for the generation about to impact the coffers of both countries as they turn to adults. I decided to see if I could expand it into a cohesive coherent post (fat chance, but here it goes anyway!)

I fear that Ms Dachel is more concerned with trying to prove the mercury/autism link than trying to help those affected by autism. She's trying to 'save' those poor souls about to be impacted by a lifelong illness and if she could just garner enough support, a 'cure' could be found. In short, she favors finding causations over treatments. While her goal is admirable, you don't just 'find' world peace or a single cause or 'cure' for autism.

We do indeed need to find better ways to circumvent, to mitigate, to eliminate symptoms of autism. The inability to communicate, the self injurious behaviors, the sometimes violent outbursts, the inability to concentrate, the lack of life preserving fear are some of the things that need to be worked on to improve the condition for autistics and their caregivers. But isn't it more an educational and societal crisis with some medical undertones than it is an health epidemic of mythic proportions as Ms Dachel likes to portray?

I would also like to put forth that those autistics writing essays may be some of our best advocates. The ones that can show society that these people are not just mere throw away, institutional-bound burdens on society. If we can get past the communication issues; the self injurious and violent behaviors; the ticks and stims, we do have potential productive members of society. Even if these autistics are the exceptions rather than the rule, don't they serve as benchmarks to show what CAN be achieved?

Part of my problem with this whole impending 'crisis' attitude as if pertains to the aging out of these 1 in 150 is that we honestly don't KNOW how many more children are seriously impacted. Do we truly have a large upcoming adult population of autistics that will need services or do we just have a handle on classifying a group of people that were just there to begin with? Do we have a brand new entire group of non verbal autistics coming up that will overwhelm the system with tsunami-like power? Or do we have better classifications of those formerly labeled as mentally retarded who now have an opportunity to be better helped because of the new classifications?

I honestly don't know what the next 10 years will bring. I'm pretty sure it will be somewhere between the budget shattering catastrophe that is being predicted by Ms Dachel, and the Y2K dud of a firecracker being foretold by some on the autistic advocate side. We simply don't know what positive impacts early interventions will have; everyone can agree that widespread early intervention and early diagnosis for that matter have only been around for less than 10 years. Most of this new 'autistic generation' aren't even teenagers yet. We simply don't know the impact of having many kids 'reclassified' as autistic instead of generically mentally retarded will be. Will the better understanding yield better results? We simply don't know how many quirky kids were missed in the past who were really the Aspergers we classify them as today.

Granted, there are enough challenges facing us over the next 10 years with regards to autism to fill a stadium. We do need better strategies for therapies for each 'color' of the spectrum. What we don't need, however is someone telling everyone the sky is falling or is about to fall. We need people like yourself, Mr Doherty, to get up there and show Parliament what you know and what needs to be done for these groups. I have no doubt that you have, you do, and you will continue to advocate in the future. We have their ear (somewhat anyway). Let's not shout in it, let's talk it through with them and work to mitigate this autistic Y2K bug on the distant horizon.


Club 166 said...

I agree that there is no "disaster" that is coming down the pike. I also agree that there will be an increased demand for services (as there should be).

Because we more fully recognize autistics potential, we need to invest more money in helping them to achieve their potential. This should be at least partially, and perhaps totally, cancelled out by increased tax revenues from more economically productive autistic citizens.

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That's where Ms Dachel gets to me. It's that alarmist attitude that every last one of the 1 in 150 is a train wreck, incapable of anything more than rudimentary skills. I'm sorry, but not going to the prom, having only one or two friends, and spending most of your time in your room does not constitute a national tragedy!

The other piece of this, which Mr. Doherty usually hits square on the head, is what about those of us with classic, Kanner's, Low functioning Non Verbal autistic children. Many don't like to talk about classifying autistics, but I feel that if we're going to get the governments prepared to understand funding, we need to show this group of non verbal/low functioning in a light that says "Yes, there are larger amounts of monies needed for this group, but the benefits will be great.” This is not for just autistics, but for any disabled group with high functioning brains but mal-functioning mechanisms to deliver the knowledge, both physical and psycho-sociological. That’s not to say that all autistics will be able to reach this level, I think many are trapped in a ‘prison’ that they may never be able to get out of. I really think that many of this group was formerly classified as mentally retarded and from an economic sense, the burden on society would be minimal. Hopefully we find a way in the future that we can spend more money and ‘find’ these people a way out…

It remains to be seen whether autistics and other disabled groups that were, in the past, considered nothing more than wards of the state can achieve economic productivity. At the very least they can be productive members of society even if they are not 'economically' productive.

THAT will be the next battle, I fear, once the technology fully frees these groups to pursue intellectual um...pursuits. "Why should I have to pay for that person to exist when all they do is proselytize about all the things we do wrong to their group". I'm not sure society is quite ready to let go of the capitalist POV...yet

jypsy said...

Mr. Doherty's son is not "non verbal", in fact, he began speaking before my ("classically autistic", that is, diagnosed with "Autistic Disorder") son did. (Alex appears to fit Mr. Doherty's latest definition of "low functioning")

We do not need Mr. Doherty spreading the untruths he is spreading, on his blogs and others, about what folks he refers to as "the neurodiversity movement" say, do and believe.


I don't really like his views on the ND movement, I think he is fighting against something that can provide great benefit to his cause.

I do, however, understand his POV regarding high vs low; and his frustration with the potential of having some of the more distressing symptoms of some autistics being glossed over by things being accomplished by many in the ND movement.

It's a fine yet fuzzy line between having a difference extolled vs lamenting the sacrifices needed to achieve stability for both the parent and autistic child. It is both a public and private enigma that I find Mr Doherty sometimes personifies.

It is my hope this 'line' would not be a battle line, but a line for discourse and ultimately understanding...

Sorry to be so full of shitake mushrooms...

abfh said...

On the economic impact of reclassifying kids as autistic instead of generically mentally retarded, Kristina Chew recently posted a link to a report from the Hoover Institute, which suggests that the cost might actually turn out to be less because "mentally retarded" was an expensive category to serve:

The near doubling in special education costs is not attributable to a rise in rare and expensive disabilities. Media reports often emphasize the growth in students with autism but their numbers remain very small, less than 0.3 percent of enrollment. The total cost of special education services for autism does not exceed 0.45 percent of all spending. Severe disability categories like mental retardation, which are costly to serve, have actually experienced a decline in enrollment. The bulk of special education cost increases comes from explosive growth in the specific learning disability (SLD) category, which is among the least costly to serve. Students in this category grew from 796,000 in 1977 to 2,848,000 in 2003.


You'd think as they get closer to the 'core' of the disorder, they'd be more efficient at treatments. We've gone from the insane, to the retarded to the autistic, I wonder what the future holds for further subclassifications?

I also think we live in this autism is larger than it really is reality because it is so close to us all. If you look at the mentally retarded category, I think it is some 5 to 10 tmes larger than autism. Not sure of the exact numbers but I was bowled over at the amount of moneys being spent in special education NOT going to autism.

María Luján said...

Hi Bill
As the mom of an autistic child outside USA, I consider that there are many more views than the more vocal or the most discussed in the blogosphere.
You say About Mr Doherty "I don't really like his views on the ND movement, I think he is fighting against something that can provide great benefit to his cause."
I agree with you in this area.
I disagree also with many opinions on the ND movement about the impact of concomitant medical problems to the autism diagnosis in the individual autism AND with the position of Mr Doherty on ABA.
Therefore, I disagree partially with both groups. I consider that autistic adults should be included and considered and heard properly. However this does not imply that I agree with what many autistic adults present as the (ir) reality that affects my son- because HIS reality has demonstrated to be different than the one they present. However, I respect and have appreciated the opportunity to learn from them about the how is to be autistic-individually.
To disagree in several aspects do not imply to be in agreement necessarily with extremists views.
Like you, I do think that every time that "disaster" visions are mentioned, they are totally counterproductive. This does not imply to deny the serious and increased demand for proper services- and not only from children.
ALSO other personal and life´s experiences- such as mine and MY son´s- should be heard because there are as many autisms as autistic children/teens/adults and as many voices as different autistic people and as many positions of parents as parents of autistics are. The problem is, IMHO, that it is very much difficult that some group hear different positions- than the ones that are defended-with the needed degree of self- criticism or open mind not to analyze everything as valid, but to stablish the validity of what is presented many times with the needed degree of objectivity. And this is difficult because many times the only thing to offer is anecdotical evidence. In a very ambiguous situation such as we have today in research in autism, it is very difficult to find answers or support .
And I consider that to hear is required for evolution of the advocate that I am. And I do it.
Advocacy implies for me as the advocate of and for my son to be involved in as many levels as medical care- the needed, required, proper scientifically based one that I least for my son it was extremely difficult to get-, emotional/educational/sociological/legal support to HIM from us. From his point of view, I need to care about his needs to truly help him, not my need to know about the why- whatever valid they can be and I consider that they are.
However, advocacy has developed in autism or presented sometimes as the fight against or the fight for (ABA,autism, please choose) and it has been reduced to the discussion of causes/cures yes/no many times, in an (apparently for now) noway out road.

and I feel as alone as in the begining, 3.5 years ago- except by very few exceptions-, in the understanding of what is advocacy for my son (and why I understand advocacy this way).

Thank you