Of course, this isn’t news. But usually the cost is characterized in the danger to public health.
What about the cost to people with autism? Here’s a blog post from the Simons Foundation. (as an aside–there is a real autism organization). They are quoting Cathy Lord and Paul Shattuck.
Given the diversity of the panel’s members, the strategic plan was, unsurprisingly enough, hotly debated, and continues to be scrutinized.
Most of the debate centers around the plan’s emphasis on environmental risk factors. Lord says this came at the cost of research on more worthwhile topics, such as how to expand treatment services to low-income families — a project for which she was hoping to be funded.
“It’s gone, just gone. I was pretty astonished to see that that had disappeared,” she says.
The report also doesn’t emphasize studying autism’s course beyond childhood, notes Shattuck. “The amount of money that goes into understanding services and aging and supporting people in their daily lives seems disproportionately small,” he says.
One of the problems with the vaccines-cause-autism groups is that they really don’t advocate for people with autism. They have abandoned entirely people of low income and minorities (except where they can be used for political gain).
It isn’t just that groups like SafeMinds, Generation Rescue and the rest can’t be bothered to spend the time worrying about minorities or adults. It’s the fact that the data those groups use to support the “epidemic” makes ZERO sense when you consider minorities.
Consider this: the “rate” of autism is 0.3 per 1,000 for Hispanics in Wisconsin, but 10.6 for Whites in New Jersey.
Why isn’t Generation Rescue calling for an investigating the Hispanics of Wisconsin? Shouldn’t they want to know what is “protecting” that subgroup from autism?
They don’t care, they don’t want to bring attention to the Hispanics in Wisconsin (or the under represented minorities across the nation), because it blows a big hole in the “epidemic”. Obviously we still aren’t counting all the people with autism in our prevalence estimates. How can we rely on the historical data that shows an “epidemic” if we aren’t doing a good job even now?
We’ve covered this many times in the past. It is one thing when the damage caused is more abstract. But when it become very real, when minorities are being left out in the cold, it is an outrage.
Hours and hours were spent in the IACC meetings wordsmithing the vaccine language. To groups like SafeMinds and people like Lyn Redwood, the Strategic Plan was a political document. It was a statement by the government, and it was critical to get as much “admission” of autism being caused by vaccines as was possible. So what if another generation of minorities gets mislabeled with Intellectual Disability or some other Special Education category when SafeMinds was able to get the IACC to admit that many parents think vaccines cause autism?
This is what happens when psuedo “Vaccine-injury” advocates pretend to be Autism advocates and take seats at the table. Lyn Redwood put her own interests and those of her organizations ahead of the well being of people with autism.
That’s just plain wrong.
Left Brain Right Brain 
Good point – because those organisations have been pretty vocal about the rate of autism among Somali children in the US because it is a story that suits their purpose: An Outbreak of Autism, or a Statistical Fluke? – NYT looks at the rumours around the number of Somali children with autism or ASD in clusters in the US.
Good point – because those organisations have been pretty vocal about the rate of autism among Somali children in the US because it is a story that suits their purpose: An Outbreak of Autism, or a Statistical Fluke? – NYT looks at the rumours around the number of Somali children with autism or ASD in clusters in the US.
Neither do you. Where’s the lobbying on this site?? Instead of lobbying for services we’re lobbying to stop the “R” word??
How does stopping the “R” word get services?? Especially when CBC and it’s ilk are posting these “feel good” autism specials which make it look like services aren’t needed.
Where’s the Autism Acceptance project on lobbying for services?? Estee’s so far out of the loop with her “blank cheque book” and private schooling for her kid she doesn’t know what’s there or not. YET, she posts, post about how the rest of us have to “suck it up and get over it”.
Don’t blame the other organizations when you aren’t doing it yourself.
Farmwife- Where did anyone say services aren’t needed?
After more than a decade of looking for any connection between vaccines and autism, and finding none…shouldn’t we put the money into something worthwhile? Something that will actually make a difference to children and adults with autism?
They are the ones losing out.
Teaching society that people with autism shouldn’t be looked down upon, that WE can learn from THEM if we could just be quiet and listen…doesn’t mean they don’t need any help.
It is possible to draw attention to the need for services WITHOUT leaving the impression that people with autism are to be pitied.
I have learned from my experiences with my two boys (who have autism) that most of the time the “problem” belongs to everyone else and not to them. Which is why raising the “right” kind of awareness DOES make a HUGE difference.
“Neither do you.”
You are welcome to look for the posts on this site on the IACC. You are welcome to see where we got a number of people to submit comments to the IACC on the strategic plan. You are welcome to note that we pushed hard for IACC Strategic Plan to include lifespan and diversity issues.
Also,
you might want to see what ASAN is doing. They gave at least one very good, long, invited presentation to the IACC. They are working hard for real change, real help for people with autism.
Do you know what the rate of autism in hispanics is in N.J.? I was just wondering because having lived in both states…N.J. is much more ethnically diverse than Wisconsin..Is the rate of autism in Hispanics in N.J. considerably lower there as well? I am just wondering if the lower rates in diagnosis somehow relate to minority representation in the population of the state.
Lastly–
I’d welcome the chance to take Ms. Redwood’s seat on the IACC. I am certain I would do a better job.
New Jersey:
Hispanics 9.7/1,000
White 10.6/1,000
table 2 of this document
They have abandoned entirely people of low income and minorities (except where they can be used for political gain).
Thank you. Thank you. Thank you for making this observation. In the five years since my first child was diagnosed I can count on one hand the number of times I have encountered another non-white individual at some autism related function. The vaccines-cause-autism groups have a very select group to which they appeal. They have nothing to offer the vast majority of people in world living with autism.
For over 30 yrs i have had my daughter at home with me because she is not able to live independently , i dont care where she is on the spectum or what ever you call it , or that she has a mental age of 7 due to brain damage , i am not a “carer” , i am her mother . If you feel so ashamed of your “disabled ” child that you have to get involved in the blame game to show it was someone elses fault , so be it , if the only way you can deal with the 24/7 attention a special child needs is to fight for a cure , you go for it . but my advice to all of you out there who feel that looking after your child is a struggle take a good hard look at your selfs . The best we can do for each other is if you find something good , that helps , then share it , as for services – what the hell do we need that others dont ?