On Monday, I drove Ian about 30 minutes away to a picturesque corner of New Jersey with green hills and white horse fences to a private therapy center for a fresh set of educational and IQ tests for Ian. Our lawyers insisted that district get new data on my kid in order to rewrite Ian’s transition plan.
Ian’s IQ has been tested many times over the years. I don’t think we ever tested Jonah, my typical son, but it’s just something that happens when you have a student with an IEP. Students with IEPs must be tested for everything — IQ, education, speech, whatever they need — every three years, because theoretically those tests should guide schools about goals and services for the student.
Most school evaluations tests are conducted by school staff who have varying levels of training; so sometimes these tests are done well, other times not so much. Remember: if you don’t believe the tests are accurate, you can request in writing that the district pay for evaluations with an outside expert. That’s what we did, and that’s why we at the grassy, hilly town that morning.
When we got there, Ian went into one office with the psychologist, and I spread out my work in a spare room and began fleshing out pitches for magazine articles. Three hours later, a famished Ian and the psychologist emerged, and we talked about the results.
Testing the intelligence level of people with autism is not easy. The standard IQ tests are overly reliant on verbal instructions - a weakness for most people with autism. Many people with autism will have wildly divergent scores for verbal and nonverbal areas of intelligence, which makes it tricky to create an accurate composite score. They may not perform in expected ways, because of the autism stuff. They might not be able to concentrate on a test that day, because the testing room has florescent lights. Those are just a few of million of problems that come into play when doing these IQ tests. That said, we’ve come a long way in understanding the autistic brain.
When Ian and I were first starting off on our autism journey, we would still come across people who thought that all autistic people had cognitive disabilities. They refused to acknowledge that Ian was smart; any talents he had were chalked up as “splinter skills.” We would look at tests that put him in the 99.9th percentile for something, and they would not believe the results. But now, we know that half of all children with autism have an average to above average IQ, and that information has trickled down to schools, so I don’t usually have to fight that fight with teachers anymore.
There are various tools for testing a person’s IQ. Some people like Raven’s Matrices over the WISC for measuring autistic brains, since it is less verbally based. Ian took a young adult version of the WISC test that day. While she didn’t have the scores ready, the evaluator predicted that his scores would be similar to previous results — superior for non-verbal and average for verbal. She didn’t think we should consider other tests she gave for measuring processing speed, because he cared more about perfection than speed and didn’t want to rush his answers.
Now, some of my friends refuse to have their kids tested by the school — it is very painful to see those results sometimes — but sometimes it’s necessary to put on your parent armor and get those tests done. Schools want to create one-fit-for-all special education classes. They want to throw all the oddballs in one room and walk away.
However, parents have to fight against the special ed dump. Everybody has their own talents and abilities, which require individual programming. Right now, Ian is in a classroom with non-verbal students; it’s not fair to Ian or to the other students. Those tests force schools to create programs that work for kids with IQs below 90 and other programs those for kids with IQ above 90.
Also, if there is a large gap between IQ and other measures, like reading ability, parents can demand that the school provide additional help for the student. A high IQ score gives parents a great deal of leverage when asking for specific services.
At the same time, a high IQ test alone does not predict success in adulthood. Autistic people need coping abilities and survival skills. They can’t tell their boss that he is stupid. They have to remember to turn the stove off, after making eggs. They can’t stay up all night playing video games. An autistic person may have a non-verbal IQ in the top percentile, but has the coping ability of a three-year old. Those other disabilities are just as debilitating as cognitive challenges.
Also, an IQ test, even one that is correctly administered, does not tell us about the awesomeness of any person. It’s just a number, a game. A 60-minute snapshot of person that tells us nothing about their inner greatness and value to a community. It doesn't tell us anything about the warmness of a person’s heart, the joy of their laughter, the comfort that they bring to their family — and that’s the stuff that really matters.
An IQ test is a useful tool for advocating for better services for your child, but at the end of the day, it’s just a dumb number.
We’re watching “As We See It,” a show on Amazon about three people with autism learning how to become independent adults. VERY on topic.
I wrote about my student loans on the personal newsletter.
Some pictures of last weekend. While I am struggling with the realization that helping Ian transition to adulthood is going to be my full time job for a few years, I am also learning that this job can’t consume me. So, I had lots of fun last weekend.