In particular, I would like to answer a question that came from a member of my Turn Autism Around community: How do I know if my child has an intellectual disability? They say most children with autism have intellectual disabilities. Is this true?
Intellectual Disability and Autism Diagnoses
Lucas was diagnosed one day before his third birthday in 1999 with moderate to severe autism. But a month before that, we brought him to a psychologist who did an hour’s worth of cognitive tests, including an IQ test.
At the end of the visit, the psychologist diagnosed Lucas with PDD NOS. Pervasive Developmental Disorder Not Otherwise Specified. PDD NOS is no longer a diagnosis as of the DSM 5 but did exist in the DSM 4. We now no longer use the diagnosis of Asperger’s as well. They melded everything together to be Autism Spectrum Disorder when the DSM 5 came out in 2013.
The diagnosis of PDD NOS didn’t quite meet all the criteria for autism so I took Lucas’s case to be very mild. But I was still upset and I asked if I should go down to the children’s hospital, where I had an appointment for the following month. The doctor told me no. That they would tell me the same thing that he just told me.
I got the testing report in the mail a couple of weeks later. And not only did it say PDD NOS, but it also had diagnosed Lucas – who was not even three years old – with mental retardation. We don’t use the term mental retardation anymore, instead, we say intellectual disability. Both the terms mean an IQ of under 70. So I was really devastated when I saw his diagnosis.
When to Measure Intelligence
When we got to the children’s hospital a month later, Lucas was diagnosed with moderate to severe autism. I asked the doctor about this mental retardation diagnosis that the psychologist had given him. And he said that they would not have diagnosed him with that.
They wouldn’t have pinned that label on him until at least about five years of age. I learned after that, that an IQ is only stable at the age of eight. Lucas also had subsequent IQ tests and he always kind of scores in that mild, sometimes moderate range of intellectual disability.
In many states, having an intellectual disability diagnosis in addition to autism does provide more protection. Like getting IEPs every two years instead of every three years in my state. It can provide more protection legally if your child does something and has both autism and an intellectual disability sometimes that’s that provides a safety net. Then it also provides more services. Because a child with a more severe intellectual disability is going to need, like Lucas does, supervision around the clock.
How Often Does an Intellectual Disability Occur with Autism?
I did a podcast about the work of Dr. Ami Klin in episode 93. The current research he works on suggests that autism plus intellectual disability occurs about 27 or 29% of the time in eight-year-old white children. In black children, they have almost doubled the rate of intellectual disability with autism at 47%. And Hispanic children are right in the middle with about 36%. Give or take a percentage or two.
When I saw Dr. Klin present in 2019 at the National Autism Conference, I asked him if he thought autism could be prevented. He said no, but that he did believe that language disorders, behavioral issues, and intellectual disability can be prevented, reversed, and remediated in many children with autism.
Also, the fact that black children have double the burden of intellectual disability with autism does not mean that they have different genes. It means that they lack access to quality early detection and to quality early intervention. It is really important that no matter what race you are or how old your child is that we do everything in our power to get a child to be as high functioning as possible and to have as little intellectual disability or no intellectual disability.
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Teaching Adaptive Skills
Nobody has a crystal ball to look backward or forwards. But we do need to make sure that we are doing what we can to engage a child, to teach them language skills the right way, and to teach them adaptive skills in the right way.
I also want to say that I think in the ABA field and the Verbal Behavior field, we focus a lot of our time on language and verbal and nonverbal IQ, where a lot of the IQ range is actually more related to self-care skills. Like if you have a four-year-old who is not potty trained, he’s not that far off the curve. Because by four years old, 75% of kids are potty trained and 25% aren’t. But if you get to be five or 10 or 12 and are not potty trained, then you have much more of a gap between what is expected of a typically developing kid and your child or clients.
Potty training is just one example. Other safety awareness includes knowing not to touch a hot stove. Being able to regulate the water in the bath. Brushing their teeth independently, etc.
That’s why it’s so key that we not just focus on table time, but actually focus on the skills that are not only going to improve cognitive ability, but that are going to make a better quality of life for the child and their families.
Don’t Focus Too Much on Autism and IQ Scores
If you have a child who is making progress and you are adamant that you do not want that extra diagnosis, you don’t have to get one. You don’t have to pursue it. In my case, Lucas already had it from age three. I kept getting more IQ tests. But a psychologist when he was about four or five told me her biggest piece of advice was: don’t focus too much on intensive teaching skills and language. Focus a lot on self-care skills.
We are in the process of making some improvements to our courses, one of those improvements is that we’re going to focus on more self-care skills. Self-care is just super important no matter what your age is.
If you would like to learn more about joining our courses and community, you can attend a free online workshop at marybarbera.com/workshop.
Attend a FREE Workshop!