I have been looking for the benchMARKED film for a while now - this is a production of the Ontario Autism Coalition. It's a good introduction to autism and the realities faced by families in Ontario. A warning before you watch - the film is a downer and I think the producers meant it that way, so watch it when you're in a good mood. (If you get a warning saying you have to download a player, just refresh the page and fast forward to where you left off to continue.)
Also, here are some updates since this mini-documentary was made:
- Paul Ceretti lost his appeal and Delanie was ejected from IBI.
- Mackenzie, Paul's other twin daughter, was also ejected from IBI.
- On a positive note, Paul has found a way to train students and other volunteers to continue this therapy for his girls on some level.
- I have no updates on the McIntoshs.
Because the regional autism programs in Ontario rely so much on standardized testing to determine how well intensive ABA (known as IBI in Ontario) is working, I have (probably not surprisingly to some readers) taken an active interest in psychometrics - instruments, theory and interpretation. It's really quite fascinating, but at the same time - potentially unfair - to children with autism and their parents.
There are two measures of importance that regional autism providers use to determine if IBI is effective. The first is called adaptive behaviour. A measure of adaptive behaviour is basically a test that determines how well - compared to children of the same age - a child is able to function "in the real world". Examples include understanding when people give instructions, being able to ask for something, using the toilet, making phone calls, understanding that cars are dangerous, how to make friends, following rules, and how to play on a playground or cut with scissors. It essentially covers everything we need to do in order to live independently "normal" lives. Some psychologists use it as a measure of development because if someone has the adaptive behaviour of a two year old, they will mostly act and behave like a two year old does, even if they are say, four. This is vastly different from intelligence (discussed next) because it is a very practical measure. Someone with high IQ could potentially solve differential equations but yet be unable to make change. Making change is much more practical (i.e. useful in everyday life) than solving equations (and more of the population can do it), so it's an adaptive behaviour but solving equations is not.
Most people with autism have severe deficits in adaptive behaviour. If they didn't, they wouldn't have autism. Usually as children with autism age, they continue to develop, but still slower than their peers, so their overall level of functioning continues to become more delayed. If intervention can slow the delay by increasing rate of development, the Ontario regional autism providers deem IBI to be successful.
Intelligence is a completely different matter. Although many estimate 75% of children with autistic disorder (not Asperger's or the generic PDD-NOS) to have a cognitive disability (IQ < 70), some do not have a cognitive delay or intellectual disability. This is another important measure guiding discharge for IBI because if a child has an IQ equivalent of 24 month old and has adaptive behaviour around 24 months (or lower) and little change is observed, they typically will discharge from IBI with the explanation that the child has "maximized their potential given their cognitive functioning."
There are two types of intelligence. Crystallized intelligence (often abbreviated Gc) is intellectual ability for a particular task. Generally tests that look for Gc are verbal tests and involve vocabulary and knowledge of the world. Children with autism usually do poorly with Gc. It is very difficult to do a verbal test if you can't speak. For this reason, good psychologists will measure non-verbally, using the non-verbal part of a test, or a non-verbal test that provides a full scale IQ.
Fluid intelligence (often abbreviated Gf) is general intellectual ability that can be applied in all situations. It is usually tested with non-verbal tasks, such as doing puzzles, mazes, replicating block designs, remembering things, visualizing 3-D shapes in your head, etc. Children with autism do much better at these tasks because they don't require language.
If you are interested, here are some common tasks that measure Gf that have been adapted for use on most modern IQ tests, such as Weschler tests:
This is a photo of Carly Fleischmann with Temple Grandin. Not surprisingly, Carly has said that Temple is her "hero". Both have overcome incredible disability to be able to communicate and function in this world.
What makes Carly a hero to me, besides her obvious courage and tenacity, is how much she reminds me of Alanna. I pray Alanna learns how to talk, but she struggles with apraxia and Carly does too. But Carly found her voice - despite being non-verbal, she is able to communicate very clearly in written form, and thus verbally through technology (such devices are called voice output communication aids). This gives me hope that even if Alanna cannot speak, we may hear her voice anyway.
I do not believe Alanna is non-verbal because she has nothing to say. She clearly wants to speak but just can't. When her speech language pathologist tries to manipulate her mouth to make phonemes, Alanna welcomes it because she knows she needs the help to make the sound! She is almost saying, "that's it, help me say it!"
Carly gives me hope for Alanna. That makes her a hero to me. Thanks Carly.
This recent article from the Ottawa Citizen is reporting that the CDC in the United States estimates Autism Spectrum Disorder prevalence at 1 in 91 children (about 1.1% of the population) and 1 in 58 boys (1.74% of boys). This is a huge increase from the early days of 1 in 10000 births (0.01%). What was once a rarity is now becoming more and more common. A typical elementary school of perhaps 500 students will now include between five and ten students on the spectrum.
Will the prevalence reach 5% of boys in the next 20 years? Governments need to prepare now for this inevitability, while researchers continue to work to determine what must be the missing environmental trigger for this disorder.
In Ontario, this means:
- More trained ABA therapists graduating from Ontario colleges, and appropriate placements for them to gain valuable experience.
- Mandatory training for Educational Assistants (EAs) working with children on the spectrum.
- Increased funding for the Autism Intervention Program - there are over 1,600 kids waiting, and this will get worse, not better, as prevalence continues to grow.
- Better access to early diagnosticians for autism.
- A plan and individualized funding for community care and involvement for adults transitioning from school.
I am personally dreading the day we put Alanna in school. She does so well with IBI and she has the right supports. I am not convinced she will get this in school. My wife came across this video and I have to say - this is what I'm afraid our conversation with the school board will look like...
