1. Rate of InstitutionalizationIn Instant Institutionalization, Michelle Dawson informs us of a claim about institutionalization rates from a "fact sheet" that is disseminated among Canadian politicians:
Without treatment, autism is a lifelong affliction that results in 90% of afflicted individuals placed in institutions and residential facilities, facing an unfulfilling and bleak existence for both the individual and family members.
Michelle Dawson notes that the 90% figure cannot be supported by peer-reviewed science, and challenges autism advocates to provide a supporting citation.
I wanted to go further than that and verify if the figure can be supported by administrative data. Unless culture in California and Canada are considerably dissimilar, we should be able to learn something about institutionalization from the California Department of Developmental Services quarterly client characteristics report.
Before looking at the data, I should emphasize that, as a rule, only individuals with autistic disorder are eligible for CDDS services. The data is not supposed to include those with PDD-NOS or Asperger's Syndrome. Further, I will look at data for adults, who by and large were probably diagnosed under DSM-III or Kanner's criteria, and who could not have been part of an ABA program in early childhood. Adults who at some point were in the CDDS system and decided they no longer required its services for any reason are obviously not included in the data.
From the Q3 2006 report, we learn that 3,089 autistic persons do not live independently or at home with a parent/guardian. The report also says that there are 7,015 autistic adults (18 or older) in the system. So at most 44% of adult autistics in California do not live with family or independently. The actual figure could be lower depending on the number of children who do not live at home.
Of those not living independently or with family, the vast majority live in Community Care. If we only count Institutional Care Facilities as "institutionalization", the figure is at most 4.75%. That's correct, less than 5%. It should also be noted that all of these rates are falling rapidly.
2. Severe BehaviorsThere are people who go around implying that autistic children are, in general, little monsters who pose a danger to themselves and others. For example, Mark Geier stated the following in a Radio Liberty interview:
A lot of these kids are so severe, you know, they don't say a word, they attack everybody, they break their mothers arm. These are really, really aggressive kids.
Break their mother's arm? I wonder how often that really happens. The CDDS report won't tell us that, but it does have a category called "Severe Behaviors". From the latest report we learn that 16.31% of autistics in the system are classified as having "severe behaviors". That's roughly 1 out of 6.
3. Mental RetardationProfessor Meredyth Goldberg Edelson has challenged claimed rates of mental retardation in autism which are found in the scientific literature. This was recently reported in the press:
Goldberg Edelson reviewed 215 studies on autism, dating to 1937, which made 223 claims about the rates of mental retardation in autism. Only 58 of those claims were supported by data, she found, and most researchers stated their results without reporting how they measured intelligence.
Most of the studies that measured intelligence used tests that were inappropriate, Goldberg Edelson found.
"Many times, if the researchers had a child they couldn't test, they just assumed he or she was retarded and assigned a low IQ score," Goldberg Edelson said.
In the latest CDDS report we find that 28% of autistics of all ages in the system are classified as having some level of mental retardation. It's not clear how this determination is made. It is probably fair to assume there is some misclassification, and that a different type of testing would yield a different figure. In some cases a child may be presumed to be mentally retarded on the basis that he or she is unable to understand or comply with simple instructions. But the CDDS does have an "Unknown MR" category, which currently holds 6.75% of autistics in the system.
The issue is not that it is bad for mental retardation to be associated with autism. Mental retardation is a neurological difference which does not in any way invalidate disability rights, neurodiversity or self-advocacy. The issue is how easily facts and statistics are fabricated when it comes to autistic people.