The Office of Governor Ed Rendell of Pennsylvania has announced the release of the Pennsylvania Autism Census Project Final Report, which was begun in 2005. This marks the first statewide census report on autism to be released anywhere in the country. Continue below the fold for a look at the details:
For those of you who would like to take a look at the report itself, this link will take you to the PA Department of Public Welfare, the home page of which offers a link to a PDF of the full report.
Here, to me, is one of the most significant pieces of data:
In 2005, an estimated 20,000 Pennsylvanians were living with autism. The report predicts the number will grow to at least 25,000 by 2010. While the number of children diagnosed continues to rise, the report details an expected dramatic increase in the number of adults with autism. According to the report:
In 2005, more than 1,400 Pennsylvania adults were living with autism - just over seven percent of the total autism population in the state.
That number is expected to increase by 179 percent to more than 3,800 in 2010 and to more than 10,000 by 2015.
It is important to define the term "adult" in this context. "Adult" here means 21 years of age or older. This term of art is used because laws allow juvenile services for the so-called disabled up to age 21. If you add those who are age 18 to 20, the total percentage of autistics who are adult in the more traditional sense of the word increases to over 11%. By 2020, the size of the adult autistic population is expected to be equivalent to the entire autistic population as measured in the 2005 census.
This is a significant piece of data. The vast majority of resources allocated to and research done on autism is related either to research on causes or on support for non-adult autistics. The fact is that, to the extent that adult autistics will require support, that need for support will persist for significantly more years than the non-adult period of life. And states have not yet done much planning for that eventuality, particularly in terms of housing.
There is going to be a political cost which will need to be paid to make sure that sufficient resources are available to fund the needs of this population. The good news, as evident in a great many states and how legislation has been pushed through, is that this appears to be a non-partisan issue. This is, of course, related to the Six Degrees of Kevin Bacon which this condition represents. The primary impetus, for example, of much of the legislative progress in Pennsylvania came from a Republican Assemblyman, who agreed to become Speaker of the House for a Democratic majority in the Assembly, in return for pledges from both the Democratic Assemblymen and the Democratic governor to move forward on special-needs legislation. Dennis O'Brien, the Republican Assemblyman in question, has a nephew who is autistic, and has been a prime mover on special needs legislation for many years. One sees this pattern in state after state.
It's been a couple of years since I have polled the Kossack community of autism. It will be interesting to see if the numbers have changed substantially.
(In an unrelated note, this day represents the 146th anniversary of the Gettysburg Address. May we hold true to the pledges and promises of that great oration.)