I am generally not a fan of re-printing material verbatim from other locations on the web, or re-hashing a discussion to which I may simply give a link. But in this case, I will make an exception because it is so important it deserves an exception.
Amelia is a little girl with Wolf-Hirsch-horn syndrome. You can read her story here.
The short version of her story is that she needs a kidney transplant, and this surgery is potentially dangerous due to potential brain damage. The problem is that the attending physician does not believe Amelia should have the surgery because she is "mentally retarded". I am not sure of all of the governmental rules of organ donation in the United States but it appears your IQ and adaptive functioning are enough to condemn you to death if you need a new organ.
Keep in mind that by definition 2% of the population is "mentally retarded" because this diagnosis is based on cognitive ability combined with adaptive behaviour (ability to communicate, socialize, and take care of one's self) relative to the rest of the population. By definition, 2% of the population is always mentally retarded. We can get collectively smarter or better at being independent, or collectively less smart and less independent, and 2% of us will still be "mentally retarded". In other words, this diagnosis is not criterion based (if can't do X, then they are "mentally retarded")!
The doctor's response was bad enough, but the social worker's response was even more appalling. She was in the family interview to try to convince the family to give up, because hey, Amelia won't go far in life anyway, and when she needs yet another kidney in 10 years, Amelia's parents may not even be around to take care of her.
Really? That's the value we put on a life? What a slippery slope we have started. Mentally retarded today, perhaps tomorrow the elderly, or the low class factory worker. In fact, why not simply ration all health care based on our usefulness to society and our potential measure of quality of life? It's well known in Canada, for example, that people aged 65 years or higher cost double the annual health bill of people under 65, and people 75 and older double the 65-year old people. Easy way to save money - if you are 65 or older, pay your own way or suffer because hey, you might need more surgery later and what are you going to do with your life anyway? You're 65!
If anyone spouted off this nonsense they would be laughed off or lynched with extreme prejudice. But apparently my logic does not apply to "mentally retarded" people at the Children's Hospital of Philadelphia.
At first glance, it is hard to see anything wrong with the Globe and Mail's recent article on autism featuring Dr. Laurent Mottron and his colleague, Michelle Dawson.
It is easy to read this article and celebrate it as proof saying, "see, autistic people are intelligent and we are not measuring them properly." There are some very good points in this article, but there are also some very incorrect arguments.
First, Dawson and Mottron use the word "autistic" to really describe people with Asperger's Syndrome. Even people like Temple Grandin, who are considered diagnostically "high functioning autism" are really people with Asperger's Syndrome. The media paints autism as Asperger's Syndrome and the two are not the same thing. They have related symptoms, but the main point is that people with Asperger's Syndrome can communicate effectively and have no cognitive impairment.
I am not saying this to trivialize the difficulties people with Asperger's Syndrome have - they can communicate effectively but have difficulty with social communication. This is a very different problem than someone with autistic disorder who is essentially non-verbal and possesses cognitive impairment.
So when you read "typical autistics" in the above article, you really should read, "typical people with Asperger's Syndrome". I say this because typical people with autism do not have the same skill in communication that Michelle Dawson does.
Now, let's move on to intelligence. The article says that intelligence is mismeasured in people with autism because of the nature of the test. First off, I have always believe IQ tests measure ability based on the tasks on the test - that is, a test score represents someone's ability to perform the tasks given on the IQ test. It is not a measure of true intelligence, because if it were, all IQ tests would correlate 100% - but they don't. A person could get an IQ of 69 on one test and 86 on another. On the first test they are cognitively impaired, in the second, they are low average. IQ tests are a theoretical measure of true intelligence but it is impossible to measure actual intelligence. You can only get an approximation.
Now, let's examine the argument that if you replace a standard Weschler IQ test with Raven's Matrices, autistic intelligence increases. First off, some people will do equally well on both tests. Secondly, it makes sense that if autistics are better at a matrix task their scores will improve. Some tests like the Weschler scales include a matrix component but also have many other components. I'll tell you what - you take an IQ test and then base your intelligence on one subtest - your highest score, and I'll bet you were smarter than you thought too.
Doing well on Raven's Matrices proves one thing - you have ability in abstract reasoning. A definite benefit for sure, but only one part of the construct of intelligence.
The reason we have tests that are standardized across the population is to get a sense of how someone performs relative to everyone else, that is the point of normalized scores. By saying "autistic people don't do well with verbal tasks" Mottron is recognizing a core deficit of autism - verbal processing. Since the measure of intelligence is ultimately meaningless (remember, it is a measure of the tasks performed which is an approximation of intelligence - and the approximation varies widely depending on the tasks), it is equally meaningless to say "autistics have higher IQ if given a different task". Of course they can. I have higher IQ too if you only give me a task I am good at doing. This doesn't mean people with autism aren't intelligent, it means ability is quite variable depending on the task and this is not typically seen in the unaffected population.
So putting aside the idea that IQ score = intelligence, I can say that people with autism will have a lower score on these measures than people without autism generally because of the tasks, and by altering the tasks I give, I am not giving the same test. Then the normalization becomes meaningless because I am not comparing apples to apples.
Or to put it another way - if a person scores 60 on a verbal test of "intelligence", it doesn't mean they are not intelligent, but it does mean that relative to everyone else, they are not good at this task. Since one's ability to do the task can impact how well that person learns, we have to either change the way we teach or help that person do better at that skill. Either way, having the measure is useful.
People who advocate for neurodiversity or "acceptance" of autism push the idea that modifying expectations or the environment for autistics will allow them to contribute better to society. No argument there. But it is a completely different thing to say, "if I modify the environment, this person is functioning at the same level as everyone else." No, they are not. They are doing something they couldn't do before because of a modification. There is nothing inherently wrong with that, but we have to recognize the difference between being able to do something independently the way everyone else does it and doing it with modifications. This measure is important because without it we can't really measure progress.
A person's ability to be self-sufficient and independent is based on their ability to adapt and function in the real world. Sure, some employers may be willing to adapt to help people with autism but why bother when you can hire someone who doesn't need help? Isn't this the definition of disability? Mottron does mention that despite "intelligence" day to day functioning is definitely a problem for most autistics. In some fields, for some people, autism may be an advantage. For most people with autism, it is not. Pretending it is is disingenuous, and that is reality.
I should mention Michelle Dawson intervened at the now famous Auton case that determined the Supreme Court of Canada could not compel governments to cover ABA treatments as medically necessary therapy. Her claim? She did not receive treatment and she is fine. Good for her. My daughter isn't like her and needs treatment. It's her best shot.
