NEW BLOGS FOR OLD
There is a new blog on the block. Autism News Beat opened with this.
“I’ve started this site as a resource for journalists looking for accurate, evidence-based information about autism. I plan to review and comment on print and electronic coverage of autism, and interview journalists, editors, and others to gain their perspectives on this much reported but little understood story.”
The second post seemed to recommend the evidence based intervention of ABA over stem cell therapy. In fact the evidence base for ABA is open to question as Michelle Dawson was quick to point out. Her blog, The Autism Crisis, is a useful source of well referenced criticisms of ABA. I suspect that Autism News Beat was probably so impressed by a news report which for once clearly rejected biomedical interventions, that they decided not to highlight the controversy surrounding ABA. This is akin to backing Stephen Dawkins in an argument against intelligent design while deciding not to mention his disagreements with fellow evolutionist, Stephen Jay Gould. Disputes within the evolutionary camp are of minor importance compared to the gulf that exists between us and the creationists. Similarly the differences that exist within autism science are clearly of a different order to the differences between autism science and autism woo. [Pace Ms Dawson. Despite the efforts of autism curebies to reduce it to the level of woo, behaviourism is science based.]
Another news story centres upon the death of an autistic child. Hakeem was not subjected to life threatening interventions to “cure” his autism. He was loved and accepted by a mother who removed him to America to escape the ignorance about autism that leads people to regard it as a form of demonic possession in Senegal. Similar ignorance exists in parts of America, sometimes with tragic consequences.
Hakeem was not killed by quackery. His death appears to have been a natural tragedy. His mother was so impressed by the progress he had been making following a programme of relationship development intervention that she is returning to Senegal and mortgaging her home to set up a school based upon RDI principles to help autistic children there. I have some doubts about RDI. It comes across as evangelical and expensive. There are no independent studies to support it. But it is better than exorcism or stem cell therapy and I send good wishes to Hakeem’s mother, Sabelle Jelani and to her proposed school.
PC VERSUS FC?
Another news story centres upon Ralph Savarese, who adopted an autistic child. They apparently made great progress using facilitated communication. The media interest surrounds his book on the subject. I have not read it yet. But I am thinking that this is yet another approach that helps some individuals but is hyped up as a solution for all individuals and falls into the abyss when these impossible claims on its behalf are dismissed.
DISABILITY RIGHTS KNOWS NO BOUNDARIES.
Leaving autism aside, two other news reports caught my eye this week. One is about accepting people with Downs Syndrome The early years of Downs Syndrome are reminiscnt of more recent attitudes to autism. In the year of my birth, 1952, the Guardian reports that parents of Downs children were told:
‘Not to worry, there are plenty of places for children like him.’ And she said, ‘In any case, they don’t live long.'”
Attitudes have changed, as the article makes clear.
“Or perhaps, as some of these stories may show, it could be because of a slow but growing understanding that a child born with Down’s syndrome today really does, perhaps for the first time, stand a chance of leading something remotely resembling a decent life.”
Downs Syndrome has not changed. But attitudes have. So Downs kids can now look forward to decent life. As a consequence parents are no longer desperately seeking amniocentesis and therapeutic abortions in the numbers they once did. The level of Downs births is now constant. The level for positive outcomes is rising. Downs children are no longer routinely sterilized. Some of them may marry or have children.
DISABLED SEX LIVES!
I have seen severely disabled people in wheelchairs go potholing, abseiling and rock climbing. Usually this involves able bodied people and a lot of rope. There is no way they could do it on their own. Sometimes it is the same with sex. But helping a severely disabled person achieve sexual fulfillment involves a far more serious risk assessment than mountaineering. So full marks to Treloars College for tackling this and the Observer for a good job of reporting it. We have nuns arranging for a prostitute to visit a young man so he have sex before he dies, couples being assisted into position and them left alone, even marriage. And what about the possible offspring of these relationships? If the love and care that facilitated their conception is transferred to their upbringing these will be lucky children.