Over a year ago, I wrote a post at Autism Street titled,
“California’s Invisible Autism Epidemic“.
At the time, IDEA child count and population data was available through 2007. Admittedly, what follows is a bit of a repeat, but there is updated information included too.
That January 2009 post asked the following question:
It would seem that many an “autism advocate” has warned us of an impending “crisis” that looms for California’s healthcare systems and schools. If autism caseload is increasing, and it represents a real increase in autism itself, then a next logical conclusion is that, ceteris paribus, similar increases will also be seen in the total numbers of children in special education in California’s schools, right?
And suggested an answer:
Wrong – well, maybe wrong.
Another year has passed, and IDEA data for 2008 is beginning to become available. Here’s what the preliminary IDEA data for California kids in elementary, middle, and high schools shows for autism now:
To borrow a phrase from Bev over at Asperger Square 8, “Don’t Panic!”.
Also, please remember, that like the CDDS client data, the IDEA is not descriptive epidemiology.
The USDE data are not reliable for tracking the prevalence of autism, and they in fact never were meant to fill this need.
What we can actually learn from this, is that the increase in the number of kids receiving special education services who wear an “autism” category label continues to increase.
Of course the, “not so fast” is next.
The Invisible Epidemic
The next graph shows a bigger picture in California. It’s the number of students (age 6-17) receiving special education services, as a percentage of the population (age 6-17) for all disability categories.
The percentage has been flat, at a little under 9.2%, for 11 straight years. How is this possible? If there have been “epidemic” increases in the autism category, all things being equal, we should have seen this number rise, shouldn’t we? And therein lies one potential answer – all things are probably not equal. It’s true that within the IDEA data for California, the increase in the use of the “Autism” category label is not offset by decreases in the use of the category label “Mental Retardation”. The increase is also not offset by a corresponding decrease in use of the label “Speech or Language Impairment”.
Speech or Language Impairment
A communication disorder such as stuttering, impaired articulation, a language impairment, or a voice impairment that adversely affects a child’s educational performance.
So what else is there? Something big in California?
Specific Learning Disability
A disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in an imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations, including conditions such as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. The term does not include learning problems that are primarily the result of visual, hearing, or motor disabilities, of mental retardation, of emotional disturbance, or of environmental, cultural, or economic disadvantage.
I can still see how, in days of lower awareness and recognition of autism among parents and educators, an autistic child could easily be placed in this category (as a kind of catch-all), based on the first portion alone – “A disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written…”. It could even be the case, that alongside less awareness and recognition, there was also some degree of unwillingness to use a category label like “Autism” on the part of both parents and educators.
Interestingly, the apparent in increase of .09% of the resident population categorized under “autism” appears to be offset by a .09% of the resident population decrease for “specific learning disabilities” in 2008.
Source data can be found at http://www.ideadata.org
Left Brain Right Brain 
The Truth is out there. These are political statistics, in the sense that they relate to statutory provision.
I am sure they might have rich pickings for a cultural anthropologist or a sociologist because what they reflect is changes in social policy and the publics conceptualisation of various disorders. It is tantamount to societal munchausens by proxy with so much manipulation of diagnoses going on.
It’s not unlike the fraud that parents practice in the UK in order to have there children placed in schools, whose catchment area they do not live in.
http://news.bbc.co.uk/1/hi/education/8334503.stm
See “Autism Home Healthcare Staffing Realities” on You Tube for an insight look at how hard families have to fight for obvious needs. Here’s a family that shows that they have a child who would cost state of California over 356,000 yr. PLUS (plus, meaning the basic cost of institutional care isn’t factoring in the 1:1 this autistic patient would need). This family is willing to KEEP the child at HOME, which saves the state over 200,000 a year, yet the state agency charged with duty to provide home health care under Olmstead Act and other laws, is actually FIGHTING this family, and telling them, “we aren’t equipped to help you….you should place your son in an institution until the budget cuts are over.” As if they will ever be over. What is so news worthy about this story/case, is that the FAMILY has managed to do what GOVERNMENT has FAILED to do: keep their high risk, costly child at HOME. Yet, despite the family doing the job government can’t do, the same government FIGHTS the family and tells them, “we can’t offer you more than 12,000 dollars a month in home health care services,” though the cost of OUT of home care costs would be around $33,000 month!. Now, that is clearly a REASON why California continues to be one of the states that just doesn’t understand how to SAVE money.
Source: Basic cost for institutional care at Fairview Developmental Center is around 356,000 per year, NOT including 1:1 or 2:1 overtime costs paying extra nurses and staff at institution to care for the type of autistic person portrayed in this and other videos on you tube under cdfoakley and kgaccount. The cost to KEEP this type of autistic person at HOME is FAR less than what it would cost to place him OUT of home. Keep in mind, this person portrayed in videos is OVER 18, so family does NOT have to keep him at home. But they are willing. A rare case indeed, which is a case study in cost effective in home care vs. out of long term nursing care expenses. So the question remains, if California officials do NOT provide this family with needed in HOME supports (nursing assessments repeatedly assessed this case at 2:1) then the state will be paying FAR more than what they need to pay to KEEP the child at HOME. It’s RARE to find families that are WILLING to keep an autistic patient with this HIGH level of care at HOME. So instead of supporting this family, the state pushes them to place the child? How does that make economic sense?
A new study suggests that the observed increase in the diagnosed prevalence of ASD is almost completely explained by diagnostic changes:
http://www.ocregister.com/articles/autism-714688-chapman-study.html