“He’s not intellectually disabled; he’s just intellectually disabled,” ASD & ID

Moving On

Image by K. Sawyer Photography via Flickr

Discussions of intelligence and autism get heated very quickly. There are passionately divergent views; some seeing astoundingly high intellect as part-in-parcel with the autistic mind, with others claiming low intelligence levels almost always come hand-in-hand with an autism diagnosis. These debates have only got more heated with the proposed changes in the DSM-5 (a key diagnostic manual for identifying such conditions as autism), since it moves to make a separation between autism and various intellectual disabilities.

I’ve only recently become aware of a vital difference in how people use particular terminology, that I think requires clarification. From what I can gather, much of the different terminology use reflects country of origin; particularly of people in the United States, where rhetoric and political movements around the use of the word “retarded” have gained significant momentum and received wide-spread coverage. This is particularly relevant to the use of the terminology “intellectual disability.”

There is another grouping of directly related words which also cause confusion and disagreement where often the disagreement is not actually substantive. That is around the use of the words “intelligence,” and “intellect.”

In this post I will attempt to explain the broadly different uses of those terms, and how their different uses affect the rhetoric about the relationship between ASD and intellectual disability in particular.

I’ll start by saying that under one meaning, my son is intellectually disabled. And under another meaning, he is not. But that under both meanings, the substance of my claim is directly related to and impacted by his autism.

The first meaning of intellectual disability, is that as a replacement word for “mentally retarded;” often used to refer to those of notably limited intelligence when measured as an IQ of 70 or below. With the discriminatory and derogatory use of the term “retarded,” “intellectually disabled” has increasingly taken its place as a kinder and less-loaded terminology.

There is a second, very different use of the term. That is to refer to people who have intellectual disabilities as opposed to physical disabilities. Whereby the word “intellectual” is just a descriptor that the disability primarily affects the mind, rather than the physical body. Some disabilities are both intellectual and physical, and sometimes the line between the two is less clear. But in terms of such activities as charities, services, support, and meeting education needs, it is frequently helpful and highly relevant to be able to differentiate between whether the person you will be dealing with has a physical, intellectual, or both types of disability.

So when I say my son is intellectually disabled, what I mean is he has an intellectual rather than a physical disability in this sense. Specifically, that autism has affected his intellect. But not necessarily his intelligence, and therefore, he is not intellectually disabled in the first sense I discussed. Already, you can see why I now have to discuss the difference between “intellect” and “intelligence.”

“Intellect” is always affected by autism, since autism affects learning, it also usually impacts on reasoning and the ability to think abstractly (particularly when autistic children are compared to “normally” developing peers). “Intelligence” however, is a more controversial thing than “the intellect,” and is notoriously difficult to measure in autistic people (and indeed in the average population; I recently read a very good book that explains the bad educational practices based on unsound and disproven theories about how intelligence develops in children.)

Because of the clear and predictable difficulties assessing the intelligence of children who face challenges with social interactions and language use, using an IQ test to reach a  conclusion about either the current intelligence levels or the child’s potential intelligence levels, is often unhelpful (though there are certain intelligence tests which can perform the task better than others). Even if one could get a read on the intelligence of a given autistic individual, intelligence itself continues to be a rather elusive and poorly understood thing, with many theories still being developed (for example) about the nature versus nurture of intelligence levels. For all such difficulties, there are times of course when we can meaningfully say “this person has very low intelligence and for medical reasons we can expect that not to change” or “this person has remarkably high intelligence and is functioning significantly above their age-peers and even the average adult.”

For what it’s worth, the professionals that have worked with my son, and my family members who have spent significant amounts of time with my son, have all commented that – despite the serious challenges affecting my son’s intellect – he is clearly quite intelligent. Over the years – as his language and social interactions have significantly improved – that intelligence has become more obvious.

I suspect in the past I have not been 100% consistent with my use of terminology, since I was not as aware as I am now of the difference (and importance of the differences) in uses. I will no doubt in the future too, make occasional slips into using the word “intellect” when I mean “intelligence,” or use the term “intellectually disabled” when I mean “low intelligence.” I will make a particular effort to be clear with my uses; if my use is ever unclear please do ask for me to clarify. I would encourage you too – if you find someone else using such terms in a way that leads to conclusions you hold to be false or outlandish – to first clarify in your mind what they are really trying to say, and thereby make sure your reply is relevant. They may not even realise their own confusing use (and perhaps multiple uses) of such terms.

This post is not meant to be definitive in the debate about uses – chance are there are other uses or dominant uses that I have not addressed or given too much / too little weight – but I think it is at least important to be cognizant of the varying terminologies and how they impact our ASD / intellectual disability debates.

***

A selection of my previous posts on intelligence and ASD, relevant to issues discussed in this post:

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9 Responses to “He’s not intellectually disabled; he’s just intellectually disabled,” ASD & ID

  1. sarasiobhan says:

    Mmm.. interesting. The problem is that ‘intelligence’ is socially constructed and what is held to be intelligent is defined by particular people, or groups of people. In the UK, generally white, middle class people. I think one of the fascinating things about autism is that it makes visible the way in which we take something like ‘intelligence’ as a given, something that can be measured using an IQ test. This test measures a static set of variables, of things that are held to be an indication of intelligence. If your ‘intelligence’ is outside of these indicators, you are defined as less intelligent. Autistic people are disrupting this accepted measure by demonstrating other ways of being very ‘intelligent’, ways that don’t fit into standard IQ tests. That is a fantastic development 🙂

    • An interesting aspect of the discussion of intelligence for me, particularly relevant to how it is presented in the autistic individual, is that I’ve long thought of intelligence as a type of synonym for adaptability. Such as, having the ability to quickly understand and accurately apply new ideas. I never put much stock in IQ tests as an actual measure of intelligence, again I wonder if that’s something to do with the country I’ve grown up in since we don’t use IQ tests to figure out which schools children can go to or to figure out who is gifted even at older ages. As you say, there’s definitely some social construction of intelligence, but I wouldn’t go so far as to say it’s entirely a social construct; I think it is perfectly fair and reasonable to say that we can identify intelligence in cultures and countries different than our own in ways that would be recognised in those differing cultures too (though, indeed, it might go under a different name than “intelligence” per se). Interesting questions and thoughts. Thanks for your comment sarasiobhan.

  2. dianne says:

    I agree with your sentiments, I generally prefer to use the term that a child (I only work with children) has learning difficulties or is impaired in acquiring new skills and that some children also have a cognitive impairment. I see children who don’t have a cognitive impairment but still have learning difficulties.

    • I like that approach dianne; it’s important to be precise, and using those expressions – rather than blanket terms like “intellectual disability” – definitely aids precision and thereby understanding of the child and the child’s challenges.

  3. Jack says:

    We are struggling with this point right now. Our son is clearly intelligent, especially around IT issues. Give him an iPhone/iPad and he is off. But ask him to say ‘I want a drink’ and he struggles to verbalise it. He can take a photo of another child by lining up the camera and timing the photo but struggles to ask the child to play with him. I fear the two abstract terms are hard for most

  4. Aspergirl Maybe says:

    I have always been told that autism is a developmental disability as opposed to an intellectual disability, although a person could have both. I’m curious what influenced your thoughts on this as I don’t recall any of the professionals we have dealt with over the years calling autism an intellectual disability.

    • It sounds like you’re falling into the trap of exclusively using the first meaning Aspergirl. Opposing an intellectual disability with a developmental disability in the way you have, presupposes the first use of the term, but I’ve used it in the second use re my son’s autism. I suspect the different approach – and primary use – that you have from myself, reflects our countries of origin. Here in NZ, there is nothing particularly scary or distorting about referring to autism as a intellectual disability, indeed one of our biggest charities for intellectual disabilities (IHC), encompases autism and deals a lot with autistic individuals. If you keep in mind the different uses of the terms – particularly thinking about the function and purpose of the second use – I think you’ll find it’s not odd at all, and doesn’t tell you much other than autism affects (and primarily affects) the mind.

      • Aspergirl Maybe says:

        I don’t know that my repeating what I have been told and asking for clarification on your original post constitutes my falling into a trap so much as seeking more information to understand what you are saying and put it in context with what I have heard elsewhere, but perhaps I am reading too much into your word choice there.

        In doing some additional reading, I have learned that the DD term is most widely used in the US and Canada, so it makes sense as to why I was told that by local professionals. Thank you for the clarification. (Have to go oversee bedtime, so I’ll sign off now.)

  5. Pingback: Intellectually disabled | lovenlearning

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