Autism and IQ Scores | Supporting Children with Intellectual Disabilities

There seems to be a lot of confusion about autism and intellectual disabilities, which is an IQ score of under 70.  What does it mean if a child is diagnosed with both autism and an intellectual disability? Do we need to be seeking a diagnosis with both?  Today, I’m talking all about autism and IQ scores and how we can help a child improve their cognitive abilities no matter what their age is.

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.

Want to learn more about autism and IQ scores?
Take me to the workshop!

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.

Autism and IQ scores that lead to intellectual disability do occur in a sizable minority of kids with autism. And children of color have a much higher chance of having both.  Our job is to work to reduce the chances of intellectual disability, especially at the first signs when your child is very young. And as your child gets older to focus on skills like self-care skills, safety skills, and language skills to not only improve their cognitive ability, but also improve their safety and their quality of life. 

If you would like to learn more about joining our courses and community, you can attend a free online workshop at marybarbera.com/workshop.

Want to learn more about autism and IQ scores?
Take me to the workshop!

Transcript

There seems to be a lot of confusion about autism and when it is existing with intellectual disability or an IQ score of under 70.  What does it mean if my child is diagnosed with both? Do I need to be seeking a diagnosis with both?  Today, I’m covering all about IQ scores, intellectual disability when it happens with autism.

Hi, I’m Dr. Mary Barbera, autism mom, Board Certified Behavior Analyst, and bestselling author. Each week I provide you with some of my ideas about turning autism or signs of autism around and today I am giving you, giving our members an answer about IQ and how we can turn, uh, intellectual disabilities around.  How we might be able to prevent cognitive, uh, differences, deficiencies.  How we can help a child improve their cognitive ability no matter what their age is.

We’re talking all about IQ and intellectual disabilities today so let me share that clip with you. Big, important question that just came in yesterday from one of our members. Um, how do I know if my child has an intellectual disability? They say most children with autism has, have intellectual disabilities. Is this true?

I really wanted to tackle this question because, um, I told this story a few times, but most people know that Lucas was diagnosed one day before his third birthday, with moderate to severe autism at the Children’s Hospital in Philadelphia. But he was actually diagnosed a month before that. So this is the late 1990s, 1999 to be exact. Um, and Lucas, uh, a month before that, we brought him to a psychologist who did an hour’s worth of testing. I didn’t realize, but he was actually doing IQ testing. Um, and I don’t know what else he did, but at the end of the visit, he said he, uh, diagnosed Lucas with PDD NOS, Pervasive Developmental Disorder Not Otherwise Specified, which is no longer a thing.

That was a thing in the DSM 4. We have moved on to the DSM 5, which is the diagnostic manual. Uh, we moved on to the DSM 5 in 2013 and no longer is PDD NOS, a diagnostic criteria or a diagnosis or Aspergers syndrome.  They melded everything together to be Autism Spectrum Disorder. So when we got the diagnosis of PDD NOS, which was like, doesn’t quite meet all the criteria for autism.

So I took it to be very mild autism. So I still was upset even though I was expecting it. And so I started to cry and the doctor kind of rushed me out of there. I asked if I should go down to the children’s hospital, which I had an appointment the following month. He told me no, why would you go there?

He’s going to tell you the same thing I told you. And I’m like, well, they want to put him in a classroom, like three mornings a week. He’s like, oh yeah, that should do it. And I’m like, well, what about ABA? Oh yeah. There’s nothing to that. This is what the doctor was saying. So anyway, it was a devastating visit.

And when we got home, a couple of weeks later, I got the report in the mail. And not only did it say PDD NOS, but it also had diagnosed Lucas, the psychologist had diagnosed Lucas who was not even three years old with mental retardation, which is the old way to say  intellectual disability. We don’t use the term mental retardation anymore, but both the terms, uh, including the new term of intellectual disability means an IQ of under 70.

Now there’s verbal IQs and there’s non-verbal IQs and non-verbal IQs are more like puzzle building and those sorts of things. Um, But either way, whether you give a child, a nonverbal IQ test or a verbal IQ test, it still requires them to sit and to attend and to follow directions. So when we got to, I was really devastated when I saw that actually on his record, uh, being diagnosed with that.

So uh, when we got to children’s hospital a month later, the day before he was three, um, and he was diagnosed there with moderate to severe autism. Um, I asked the doctor about this mental retardation diagnosis that the psychologist had given him. And he said that at children’s hospital, they would not have diagnosed him with that.

They wouldn’t have, um, kind of pinned that label on him until at least about five years of age. Um, and then I, I learned after that, that an IQ is pretty stable only at the age of eight. But, um, so, you know, he’s had, Lucas has had, uh, the diagnosis since the age of three. He’s also had subsequent IQ tests and he always, um, kind of scores in that mild, sometimes moderate range of intellectual disability.

And, in many states, including my own state and some, you know, areas that having a, an intellectual disability diagnosis in addition to autism is, does usually provide more protections like IEPs, um, every two years, instead of every three years in the, in my state.  Um, it provides more protections like legally, if your child does something and has both sometimes that’s that provides more, uh, more, uh, safety net.

Um, and then it also, um, provides more services. Um, because a child with more intellectual disability is going to need, like Lucas does, supervision around the clock. How often does mental retardation occur, uh, with autism? So I did a podcast with Dr., well, not with Dr. Ami Klin, about the work of Dr. Ami Klin in episode number 93, which is a great podcast interview.

He’s done some amazing work and he is, he has found and researchers have found, uh, he, it wasn’t all, it wasn’t his research necessarily, but the current research suggests that, um.  I don’t have the actual article.  I may be off by a percentage or two, but Dr. Klin says that, um, Uh, uh, autism plus intellectual disability occurs in white children at 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%, I believe, and Hispanic children are right in the middle with about 36%. When I saw Dr. Klin present in 2019 at the National Autism Conference, which is actually available for free online, it’s linked in the show notes to podcast number 93.

Um, I asked Dr. Klim, I said, uh, do you think autism can be prevented? And he said, no, I think, um, based on my research with eye tracking and twins, um, that the autistic gene is present. And, um, but I do believe based on my research and the research of others, that language disorders, behavioral issues and intellectual disability can be prevented, reversed and remediated in many children with autism. So, and then the fact that black children have doubled 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 to quality early treatment. Um, I just interviewed Maria from autisminblack.org recently she’s going to be on a podcast coming up and, um, she was not aware of these new statistics, but it is, um, 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 not to have, um, to have as little intellectual disability or no intellectual disability, and, uh, nobody has a crystal ball to look backwards or forwards, but, uh, we do need to make sure that we are doing what we can to engage a child, to teach them language and the right way to teach them other 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, a lot of our time on language and verbal and nonverbal IQ, where a lot of the IQ 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 three years old, by four years old, you know, 75% of kids are potty trained.

So, but 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 and standardized to be, uh, what a typically developing kid does versus, um, your child. This is, potty training, is just one example. Uh, other safety awareness will your child know not to touch a hot stove?

Will your child be able to regulate the water in the bath? Will your child be able to brush their teeth independently? Wash their hands independently. Wait in line. Um, engage themselves in, in, um, leisure activities without you worrying about their safety. So all of these things. Can they dress themselves?

Um, and that’s why it’s so key that we not just focus on table time, not just focus on length of utterance, but we actually focus on the skills that are not only going to improve cognitive ability, safety skills, IQ points but these are the skills dressing, potty, hand-washing, waiting in line, not darting in the streets, that are going to make a better quality of life for the child, your clients, and the families.

So I love the question, uh, about intellectual disability and autism, because I do feel like, um, there’s there shouldn’t be a person in the world that would want to not prevent or reverse cognitive disabilities because it’s, it’s just a, a huge burden for families. Now, with that being said, you don’t want to focus too much on the scores.

You know, if you have a five-year-old or you have a, um, six year old or eight year old and they’re making progress, you are doing the right things and you and your family 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 and I kept going and I kept getting more IQ tests, but you know, a psychologist, um, when he was about four or five, she told me she’s like, my biggest piece of advice is don’t focus too much on intensive teaching skills and language focus a lot on, on self care skills.

And so we are, um, in the process of making some improvements in the courses, one of those improvements is, um, we’re going to focus on more self care skills. We’re going to, you know, part of the assessment is the one-page assessment, the one page plan, Mark Sundberg’s self care checklist, um, and maybe if your child has language, intraverbal subtests, um, as well, but that self care is just super important no matter what your age is.

So in summary, intellectual disability does occur in a sizable minority of kids with autism and children of color, um, have a much higher chance of having both.  Uh, our job is to work, to reduce the chances of intellectual disability, especially at the first signs when your child is very young and as your child gets older to focus on skills like self care skills, safety skills, and language skills to not only improve their cognitive ability, improve their ability to follow directions, but also improve their safety and their quality of life. I hope you enjoyed that short excerpt from our monthly Q and A call with my members of my Verbal Behavior Bundle Courses.  If you would like to learn more about joining our courses and community, you can attend a free online workshop at marybarbera.com/workshop. And if you liked this video, I’d love it if you would share it with somebody else that might benefit, leave me a thumbs up, leave a comment, and I’ll see you right here next week.

Download the Transcript