I see that John Elder Robin Hood-in-reverse is at it again giving his words of wisdom and practical advice from his experiences as a person on the autism spectrum. Gadfly wonders why if JER really cares about helping out those on the spectrum, why he would solicit and accept funds for his own personal use from a charitable organization where he serves in an advisory capacity that is designed (or at least advertised as) as an entity to help those on the spectrum far less fortunate than himself.
Robison starts out that stating that "study after study" has shown that 20 to 40 hours a week of intervention with autistic kids has shown they have far better outcomes as adults than kids left on their own. I am curious as to which studies he is referring to. Certainly not Lovaas (1987) in which no adult outcomes have ever been provided, yet is considered by some as the definitive proof that there is hope for autistics to have a coin-flip probability of normalcy and not have be dependent on the dole.
He also recommends helping a child find out what they are good at and helping them excel at that skill. He uses himself as an example of one who was encouraged in auto mechanics and technology. Never mind that most on the spectrum (regardless of whether they have Asperger's or autism) are not at the functioning level of this gentleman and won't be able to accomplish what he has.
Another word of wisdom is that kids need to avoid making enemies. They need to learn how to act and conform to the rest of the crowd. This is in spite of the fact that he gave a plug for his new book with the ironic title "Be different" at the beginning of the post. It is nothing more than a simple quick fix solution that autistic kids or Asperger's kids with loud voices and funny movements are ever going to be able to control this and they can immediately be accepted by others and not make enemies. Kids with these problems are going to be made fun of and ridiculed and make enemies inevitably. There is really no quick fix for these problems.
Gadfly wonders how wise these words of an Aspergian are.
Friday, April 15, 2011
One of the many tenets of neurodiversity is that autism is not comparable to diseases like cancer because autism does not kill. This has been proven wrong many times in the instances where autistic children died in accidental drownings (for example Ashley Brock) or James Deloroy who got lost and died in a snowstorm or children hit by cars, trains etc. due to their autism. From Autism speaks and the California DDS and a new journal article it would seem that there is evidence of a much higher mortality rate in persons with autism who have the comorbid diagnosis of epilepsy than in autism alone. These data found that the percentage of persons who had autism and epilepsy was higher than previously thought. So this is one reason that neurodiversity is yet again incorrect about autism not killing people and another reason we need to find a cure for autism. In an email I received from autism speaks this was elaborated on even further: It is well established that epilepsy is a major medical disorder that is often co-morbid with autism in as many as 30 percent of children. As many as one in 20 children diagnosed with autism by age 3 could either already have epilepsy or develop epilepsy later in life. As noted by the ATP more than a decade ago, sudden unexplained death in epilepsy (SUDEP) has been identified as a cause of death in individuals with autism. Higher mortality rates than in the general population have been reported among individuals with autism, however, there is relatively little known about the specific risk factors that account for the reported higher-than-expected rate of mortality in autism. “Sudden, unexpected or unexplained death in autism is often, but not always related to epilepsy and we need to use caution when interpreting these data,” explained Autism Speaks Vice President of Clinical Programs Clara Lajonchere, Ph.D. “These findings are important for understanding risk factors that may contribute to early death in individuals with autism and further underscore the need for more accurate and accessible records on cause of death in this population. Furthermore, state surveillance programs should implement better tracking mechanisms to help us better understand mortality for individuals with autism and co-occurring disorders such as epilepsy. Critical initiatives supported by Autism Speaks brain tissue program will help bring these issues to the fore and provide information our community needs to help prevent early death in persons with autism.” Though, this does not affect all persons with autism it is not an insignificant number, so once again neurodiversity can choke on this data while they are saying that nothing is wrong with having autism and that autism is not a life-threatening condition.
Thursday, April 14, 2011
Tuesday, April 5, 2011
I see that rogue scientist Laurent Mottron is at it again using results from a metaanalysis of various research showing enhanced visual perception in what is likely a limited subset of persons with autism in order to claim that trying to cure autistic children is a bad thing. As has been written before autism speaks, an organization which advertises on its walks and fundraisers that they are funding research to find a cure for autism has given this man a nearly half million dollar grant As has been previously written on Autism's gadfly, At the time this grant was awarded it amounted to 5% of autism speaks net assets. Not an insignificant amount. Dr. Mottron states: it adds another argument against attempts to "cure" autistics. "When we try to turn an autistic toddler into a non-autistic toddler, it's painful, it's expensive and it does not work," he said. "We should not try to assimilate or break the difference (between autistics and nonautistics), but just admit that it's a difference that has good and bad consequences." While I do agree with Mottron that it is not possible given the current state of the art to turn an autistic toddler into a nonautistic one, I do disagree that research that attempts to find a cure or ways to ameliorate autism should not be funded. Autism is more than just a difference. Whatever good consequences it may or may not have,particularly in a small subset of individuals, are far outweighed by the bad. It is really even a further stretch to argue that this research proves it. I will concede I have not read the original source, only the abstract linked on Michelle Dawson's TMOB comment board. However, I have read Isabelle Souleries' study which was published in this same journal. This study had, in my opinion, a myriad of methodological problems which I have commented on elsewhere An additional problem that I was unaware of at the time was that the Raven's matrices is not a timed test, yet they were claiming that the autistics who were matched on intelligence with the typical controls who performed the test faster were somehow superior in some way. Given that this is a nonstandard use of the testing instrument, this really does not seem to have any credibility. There is little doubt that Souleries' study is one of the studies that they are using to formulate this hypothesis. If the rest of the studies have the same limitations, particularly with the use of a subset of pretty high functioning autistics, who have no discrepancies in their scores on the verbal and performance tests of the Wechsler, then there is a real problem with claiming this is scientifically valid work, let alone using it as a reason not to do research to attempt to cure or at least mitigate autistic symptoms. Autism is a horrific disability and disease. We need to fund more research to help mitigate this disability with the ultimate goal that we can cure it and that at some point in time autism will be a thing of the past. Hopefully this effort will continue in spite of Dr. Mottron's sophistry.