Be careful before you jump on the 1 in 68 children have autism bandwagon, here are facts you may not know:
1) The CDC statistics are based on data collected from 8 year olds diagnosed with ASD in only 11 states. – The CDC, Center for Disease Control in Atlanta, uses data collected from a network called ADDM, Autism and Developmental Disabilities Monitoring. They use only 8 year olds, which is hardly representative of all children ages 2-17 ( I pick 2 because that is the earliest age which we can currently diagnose autism). The states that are included are shown on this map on the CDC website – ADDM FACT SHEET.
2) These “new numbers” are based on data collected in 2010 using the 4th Edition of the DSM, not the new 5th edition. – The results published on the CDC website clearly state this in the Description of System section of the paper. This is important for 2 reasons, a) this data from a small sampling of the US population is already 3 years old, and b) This data was not gathered using the new DSM-V (after all the hype and arguing that proceeded the release of this book), but not one news report has pointed this out, misleading the public. Here is the CDC PAPER.
3) Because of the demographics of the states participating, minorities are under-represented. – I won’t interpret this data for you. You can see for yourself. You should note that I am not implying that the CDC has underrepresented minorities in their sample, but I think it is difficult to draw a conclusion on autism in minority populations when data is collected from areas with small populations of people of color. Perhaps prevalence is different, higher or lower, in areas where people of color are in places of power such as government, or are well represented in the medical profession. Below are links to the 2010 census data on the states participating in the new numbers. If you don’t like my sources, you can visit the CENSUS BUREAU WEBSITE.
Arizona – 76.4% White http://en.wikipedia.org/wiki/Demographics_of_Arizona
Utah – 88% White – http://en.wikipedia.org/wiki/Demographics_of_Utah
Colorado – 81.3% White – http://en.wikipedia.org/wiki/Demographics_of_Colorado#Demographics
Arkansas – 77% White – http://en.wikipedia.org/wiki/Demographics_of_Arkansas
Missouri – 82.8% White – http://en.wikipedia.org/wiki/Demographics_of_Missouri#Demographics
Wisconsin – 86.2% White – http://en.wikipedia.org/wiki/Demographics_of_Wisconsin#Demographics
Alabama – 70% White – http://quickfacts.census.gov/qfd/states/01000.html
Georgia – 59.7 % White (better, but still may skew data) –http://en.wikipedia.org/wiki/Demographics_of_Georgia_(U.S._state)
South Carolina – 68.4% White – http://quickfacts.census.gov/qfd/states/45000.html
North Carolina – 71.9% White – http://quickfacts.census.gov/qfd/states/37000.html
Maryland – 58.2% White – http://en.wikipedia.org/wiki/Demographics_of_Maryland#Demographics
New Jersey – 68.6% White – http://en.wikipedia.org/wiki/Demographics_of_New_Jersey#Demographics
4) Most states represented in this data collection, at least in 2010, did not have laws requiring insurance companies to cover autism diagnosis or treatment. Some of these states still don’t. Georgia, for example, where the CDC is headquartered, has voted down autism legislation and actively blocked Federal plans of expansion of healthcare. Many of us dealing with autism are under-employed, and struggle to pay for care. Many of us then are forced to fight public schools for intervention, which is usually followed by mistreatment and misdiagnosis. This is especially noticeable in the female autism population, and in poor families, again skewing data. Here is a link to autism insurance LAWS BY STATE.
5) The population sample size keeps changing. http://www.cdc.gov/ncbddd/autism/data.html
6) There seems to be no linear data following the sampled population throughout childhood. What about children misdiagnosed as autism that are later diagnosed has having another problem? What about the DSM-V that so many organizations pushed for, how does that effect the numbers? When they apply the DSM-V, will they exclude people having to get a second diagnosis to stay in the system?
7) The autism industry will benefit financially from this new statistic. – Concerned parents everywhere will feel a negative pressure with this new data, and will seek information. Large autism corporations, one in particular that spends more on fundraising than it actually collects during these fundraising events (LOOK HERE), will see a rise in profits, benefitting from peoples fear. As the word autism becomes a profitable Ad word, more people will publish these statistics, furthering the depth of the fear parents feel, and pushing them into medical treatments with companies who financially benefit above and beyond what is reasonable. I am not at all saying people shouldn’t be paid for their work. I just have a problem with the record profits while families exhaust all their assets.
What to do?
Push your local Universities to conduct linear studies on the autism populations in their cities or states. Then, publish the data into a national database.
Petition the CDC to do more extensive, linear research on all ages of children with autism, into adulthood.
Include autistic adults in the organizations collecting, processing, and interpreting data. There are many who are qualified to do so.
Include autistic adults in the diagnosis process, application of interventions, and in the law making process. Don’t think this matters? How different would the campaign for cancer awareness look if people with cancer and cancer survivors didn’t participate?
Avoid pumping your hard earned dollars into the autism industry, and put it into local resources that advocate and include autistic individuals.
Be careful, history repeats itself. Remember Baby Doe in the 1980s, the down syndrome baby that was denied a life saving surgery because of down syndrome? Remember in 1981 when several people with disabilities committed suicide because of the removal of benefits for people with disabilities by the federal government? What about Rosemary Kennedy, remember her? (http://www.tiki-toki.com/timeline/entry/50235/History-of-Down-Syndrome-Human-and-Civil-Rights-Timeline/#vars!date=1963-02-12_10:52:03!). We must be careful not to get wrapped up in statistics that instill fear and divide us.
The fight in the autism world is not unique to autism. People with disabilities have been fighting for rights, interventions, access to education, and access to healthcare at least since the late 1700’s. Yet, somehow, we are starting the timeline over with each disability, which is dramatically obvious with autism.
Perhaps we could all benefit by uniting the entire disability world, covering all disabilities, and form a coalition that allows us to advocate in a united format.
Perhaps we could start with a million person presence at our nations capitol, just like the civil rights leaders did.
I respectfully borrow the words from my hero, Dr. Martian Luther King, Jr., when I say “I have a dream.” I have a dream that one day people with disabilities will be judged by the content of the character, and not by their perceived limitations of their disability.
Engage in a discussion on our new discussion forum – http://whitephoenixautism.yuku.com/
