Autism and the Fear of Intellectual Variability

My kid is a smarty pants.  He has a memory that I would love to have (I’d be able to remember everything I needed to get at the store if I had it).  He can – by memory – remember the sequence, position, and script of the spelling of each and every word every spelled on Super Why!  He knows all of his numbers, colors, and – of course – all of his ABCs.

Yet, on 3 different occasions, my son has tested as having a mild to – depending on the test – moderate cognitive impairment.

Now, I’ve spoken before about the trouble with IQ testing.  Really, IQ tests are designed to test the IQ of NT people.  They are designed for someone who does not have communication challenges and someone who does not struggle with attending to task, sensory distractions and issues, and social challenges.  Unfortunately, our own inadequacies in testing butt heads with the fact that a single number – IQ – is used to measure and project and stereotype and determine the future of an individual.

All this because of a damn test?!?

Now, as much as I would like to believe that this is the sole reason for Jack’s performance on previous IQ testing, I know that it’s probably not the whole story.

You see, Jack’s special instructor – who he’s worked with for nearly 2 years – feels very confident that he does in fact have a mild cognitive impairment.  Now, we know he has cognitive delays certainly, and whether those delays stick and the impairment is more stable is up in the air.  I can say that having seen Jack undergo various tests like the Stanford-Binet non-verbal portions and other tests, many of the tasks he couldn’t perform for them are ones that I have not seen him spontaneously perform for us.  He still struggles with matching.  He’s still grasping object permanence.  His cognitive reasoning skills seem very delayed, based on what we can tell so far.

We just don’t know, either.  It’s hard to tell what our kids know and don’t know when they don’t always reveal it to us.  As Jack’s days increase, it will become more clear.

But so what if he remains in the mild cognitive impairment range?  Who cares, really?

Which is why when I hear other parents of kids on the spectrum – or adults on the spectrum – try to vehemently deny that autism and intellectual disability can (but not always or even most of the time!) go hand-in-hand, I cringe a bit.  I also cringe when – in the same breath – I hear claims that most kids on the spectrum are actually more in the gifted range in terms of actual – not measurable – intelligence.

I think that as the definition of autism evolves over time – as it has – we see a very broad spectrum of abilities among autistic individuals.  I see it among children Jack’s age very clearly.  I see children who learned to point and clap and wave around the age of 2 (still delayed), while my son is still learning these skills.  We see children who are fully verbal – little professors, if you will – and some who do not speak at all.  The majority probably fall in the middle somewhere.  We see children who have very good motor skills while others, like Jack, need physical therapy.  I see kids who can self-feed and kids – like my son – who can’t.

And while I don’t have statistics to back it up, my gut feeling is that the distribution of actual – again, not measurable – IQ among autistic individuals probably resembles the distribution we see among the NT (which, for these purposes just means “non-autistic”) population, too.  There are certainly autistic people who are gifted, but most aren’t.  There are certainly autistic people who are of average to slightly-above and slightly-below average intelligence.  I’d argue that the majority of autistics are in that range, whether or not they test that way.  There are also people on the spectrum who have cognitive delays and impairments, but again that percentage of the autistic population is low and the distribution probably resembles what it does for the rest of us.

Yet, I hear people claim that those cognitive delays and impairments can’t be due to the fact that a person is autistic.  Well, if we look at what we think causes autism – a difference in neurology, or being “wired differently” – doesn’t it stand to reason that different wiring probably produces variations in IQ, too?  We see a spectrum of behaviors among autistic individuals, and yet we see people argue so strongly against including IQ among that spectrum.  If the way our brain is wired affects speech, motor planning, and social reasoning, then why is it a stretch to include IQ in that arena?

Why is that?  Why are we afraid of intellectual variability?  What is it about linking cognitive delays in some individuals to autism that sends everyone screaming foul?  The autism community doesn’t want the ability to speak to reflect an individual’s capabilities, so why must IQ be thought of in this way?

Some calls are valid.  Websites that claim that a vast majority (we’re talking upwards of 75% or more) of individuals on the spectrum have an intellectual disability are just plain wrong.  If they are basing those numbers on data collected from IQ testing, I’d also say that they’re wrong.  To truly assess an individual’s IQ, one must look at how they perform in all settings, not just a standardized testing scenario.  Even taking into account only IQ testing outcomes, 3/4 seems like a very high number.  I would far prefer to see something that states that while some autistic individuals test as having a cognitive impairment, that number is likely to be skewed due to testing inadequacies.

Really what needs to happen is that we need better scientific study of IQ among autistic populations and how to best assess IQ in special populations in general.

But why do we want to disconnect IQ from autism?  Why is it that the autistic community fears being linked to low IQ?  Well, in part it is because society has created a stigma about low IQ.  Having an IQ below a certain number that represents a certain placement on the bell curve seems to have all sorts of implications for what someone is capable of doing.

But does it, really?  If my son is – as many have said – demonstrating cognitive delays and showing signs of a cognitive impairment, then I think it is nothing to fear.  So what if my kid’s IQ is below what society thinks should be considered “average”?  Does that really have that many implications for his life?  Does it say that he is anything less than you or I or even other autistics with average or above average IQs?  When elements of our community scream and point “This is not who we are!” when referring to cognitive delay or impairment, we send the message that there is something wrong with that state of being.  That we don’t want to be associated with it.  That we are afraid that people will consider our children, loved ones, and friends as less than worthy of respect and regard if this is what people might think when they speak to or about our autistic loved ones.

Isn’t that what we work against every day in trying to remove the stigma that society has placed on autism itself?

For the record, cognitive ability has NOTHING to do with potential, or worthiness, or even intelligence.  My son is a smarty pants.  How many kids his age know all of their letters or have his memory?  Does being able to reason through the placement of tangrams on a card, or feeding a picture of a boy, or following two-step directions with imbedded language have anything to do with who he is and his true intelligence?  Does finding a ball hidden under a cup without a visual cue have anything to do with his true intelligence?  Does putting together a 4 piece puzzle have anything to do with his true intelligence?  He – along with many other children with cognitive delays – can navigate an iPad like a friggin’ rock star.  He – along with many other children with cognitive delays – is SMART.

No, it doesn’t.  Because we have to redefine what intelligence means to us.  Each person is intelligent in their own way.  Each child is smart in their own way.  A child doesn’t have to be verbal to know how to cry and manipulate his parents to get what he wants.  That’s smart!  A child doesn’t have to have object permanence to know that I can climb up on the counter and open the cookie jar because I saw Mom stash Oreos inside.  That’s smart!  A child doesn’t have to be able to read to know that those golden arches mean French fries and that a smile and a simple word of “Fries!” will melt Mama’s heart, sending her speeding towards that drive-thru.  That’s smart!

Intelligence should be redefined as using what abilities you possess to get your needs and desires met.  I’d argue that all children – regardless of IQ level – are masters at doing just that.

I’d also argue that I know people who are considered absolutely NT and very intelligent – graduating from the best schools, top of their careers, and have many accolades – but who are some of the dumbest people I’ve ever met.  I’d argue that we all probably know one or two people like that.  My husband went to a very prestigious school here in the South and I met loads of very intelligent idiots there.

So, let’s not work so hard to exclude or marginalize individuals with low IQ from our conversations about autistic individuals.  When we do, we are doing the very thing we want people to not do to our community, and that is stigmatizing.

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