Thursday, June 19, 2008

Nine years

I wrote about the life and death of Tiffany Pinckney here.

She was a young autistic woman who was neglected for years extending back into her childhood, by her sister and legal guardian Allison Cox. In the spring of 2005, Tiffany died of starvation in the place where she lived, deliberately locked into a filthy, windowless basement, with no access to a toilet, food or water. She was skin-and-bones when she died, a skeleton, and caked with dirt and feces, just like the room she was locked into. She suffered beyond what can be described in words, in the middle of a wealthy Mississauga neighbourhood, hidden underneath a fancy four-bedroom home.

She may have been dead in her basement prison for more than two days before her death was reported via a 9-11 call.

Today Allison Cox was sentenced to nine years in prison for deliberately neglecting and starving her sister Tiffany to death.

You can find information about Ms Cox's sentencing in today's Toronto Star. Here is an excerpt:

Justice Joseph Fragomeni described the circumstances of the case as among the worst he's ever experienced as a trial judge.

He said Pinckney endured a "slow, painful and lonely descent into death," and that the "graphic and disturbing photos" presented during the trial "spoke volumes" about the last days of her life.

He told Cox that society demanded that she serve a lengthy period of incarceration in a federal penitentiary for what he described as a "tragic, horrific and senseless" death of a "vulnerable" young person.

He said Pinckney was denied the "most basic" of human necessities. "She was denied food, water and medical attention," he said.

"How is it possible in a country of such wealth and abundance that a person could die from a lack of food and water?" Justice Fragomeni asked. "Tiffany didn't see a doctor for five years ... (Cox’s) breach of trust was egregious."
The question remains why Ms Cox was not charged with a more serious crime. In a November 1, 2007 story, the Toronto Star quoted John Raftery, the prosecutor, as arguing in court that:

"Not only is there enough evidence to convict her (Cox) of manslaughter but there is sufficient evidence for first-degree murder."
In 2002, a young boy called Jeffrey Baldwin died in Toronto of extreme neglect at the hands of his legal guardians. He was locked in a room, starved, "forced to sleep in his own excrement", and grossly mistreated, though unlike Tiffany, he had a toilet to drink from. Jeffrey was not autistic. His horrific death (his body was "covered with sores and abrasions" and at nearly age six weighed less than what a one year old should weigh) attracted sustained attention from the major media. No one attempted to blame his death on his own characteristics, his own needs or abilities, his own presumed level of functioning, his own behaviour, etc.

Jeffrey's guardians were originally charged with first degree murder, were convicted of second degree murder, and were required to serve 20 to 22 years in prison (close to the maximum for first degree murder) before being eligible for parole.

Nine years in prison (and two years of house arrest for Ms Cox's husband, Orlando Klass) does not seem much, against the life and death of Tiffany Pinckney, and how much she suffered for so long.

Before being deliberately neglected and starved took all her possibilities away, and when she was away from the horror of her home, Tiffany "loved music." She was "lots of fun" and "excited and happy." She was "great." I will always remember her, every day.

Monday, June 16, 2008

Verbatim: Levels of functioning in autism

This very short entry in the verbatim series is from Lovaas (1996). The children Dr Lovaas refers to in this quote are autistic. Italics are in the original, which sits within one of the major autism ABA manuals:

Terms such as high-functioning versus low-functioning children are derogatory and should be avoided.


Lovaas, O.I. (1996). The UCLA young autism model of service delivery. In C. Maurice, G. Green, & S. Luce (Eds.), Behavioral intervention for young children with autism: A manual for parents and professionals. (pp. 241-248). Austin TX: Pro-Ed.

Friday, June 13, 2008

The epidemiology of Autism Speaks

Autism Speaks promotes 1.5 million as the number of autistics in the US, a figure Autism Speaks associates with a 1 in 150 prevalence of autism. For example, Autism Speaks' FAQ states that:

"As many as 1 in 150 children are autistic, according to the Centers for Disease Control. That adds up to almost 1.5 million people in the United States."
You can also find Autism Speaks informing the public that all those 1.5 million autistics are children. Here's a quote from a recent Autism Speaks press release, where Mark Roithmayr, Autism Speaks' President, is quoted as saying:

"Toys“R”Us has been a tremendous partner in helping us shine a national spotlight on this disorder, which affects 1.5 million children in the United States."
My question is, where does the Autism Speaks 1.5 million come from? Other autism advocacy organizations use this figure, but Autism Speaks is the current authority, the major private autism research funding body, a major influence on public spending, the biggest, most powerful autism advocacy organization of them all, representing and deciding the (ideally, according to Autism Speaks, very short) future of all autistic people.

If there are 1.5 million autistic children in the US, as Autism Speaks claims, and if the prevalence of autism is 1 in 150, as Autism Speaks also claims, then the total number of children in the US would have to be 225 million.

According to the US Census Bureau, the total US population is currently just above 300 million. According to the same source, the total number of children (age 0-19) in the US would be about 80 million. If Autism Speaks is still insisting, as it did in a May 2008 press release, that there are 1.5 million autistic children in the US, then Autism Speaks has discarded the 1 in 150 prevalence figure in favour of 1 in 53 (even higher than the UK Observer could manage in its big, bogus, retracted autism scare story).

On the other hand, if Autism Speaks is claiming that there are 1.5 million autistics in total in the US, including autistic adults, this produces an overall prevalance of about 1 in 200, dramatically lower than Autism Speaks' widely advertised 1 in 150.

Or Autism Speaks might be claiming that the prevalence of autism is 1 in 150 in children, and lower in adults. In order for the 1.5 million figure to work this way, the prevalence of autism in adults would have to be about 1 in 220. This is not a figure that I can find anywhere on the Autism Speaks website, never mind its rationale.

On the other hand, if Autism Speaks applies their advertised 1 in 150 prevalence figure to the entire US population (which cracked 300 million in 2006), then the result is a total of 2 million autistics in the US, of whom about 500,000 are children and 1.5 million are adults. But this would mean that there has been a high stable rate of autism. This is a scientifically sound position, but one that Autism Speaks and autism advocacy in general has rejected.

All of the figures above are easy enough to find and calculate--well within Autism Speaks' abilities. After all, Autism Speaks has numerous scientific advisors as well as a chief scientific officer. And a difference of 500,000 between the figure promoted by Autism Speaks and the figure consistent with the existing scientific literature is hardly trivial. What major, high-profile disability organization would so persistently deny the existence of hundreds of thousands of the disabled people it claims to represent? This can only result in disabled people being unable to obtain services, unable to be recognized for their contributions, unable to have a voice in their own future, etc.

But this is what autism advocates do. One of the near universals of autism advocacy is the promotion of the autism "epidemic," and the rejection of the scientific position that there's been a high stable rate of autism. The main effect of this has been the denial of the existence of older autistics. In Canada, this denial of autistic lives by autism advocates has been extreme.

Another universal of autism advocacy is a gross disregard for accuracy and ethics in reporting what is known about autism. Autism Speaks is telling the world--including governments--that when it comes to autism, you don't need to bother with the facts. You don't need to check your basic arithmetic, much less take the trouble to look up primary sources. Autism Speaks' widely disseminated 1.5 million figure, and its casual denial of half a million autistic lives, is just one example of the standards of science and ethics that leading autism advocates apply to autistics.