Sensational Learning with Penguin

In this post I will talk about what it means to be autistic with learning disability (a.k.a. general learning disability, intellectual disability, or intellectual impairment). I’m not a medical professional, and I’m not autistic myself – I’m ‘just a mum‘ of an autistic 15 year-old boy. So this post will be based on what I’ve learnt and experienced since my son’s diagnosis, and I’ll be focusing on how problematic it can be to measure ‘intelligence’ and class a person as ‘intellectually disabled’. I will also share my thoughts on the complexities of distinguishing learning disability as something separate from a person’s autism.

Background – Our Experience

My son was diagnosed autistic as a young child, over 10 years ago now. At that point, it wasn’t specified whether he had an “accompanying intellectual impairment”, as it’s worded in the current DSM-5 diagnostic manual. He was just diagnosed as having autism. When he was about to start school, he was also assessed for ‘learning disability’, as that would mean other options for what curriculum to follow in school (at that point in time we were living in Sweden, where having a learning disability is a requirement for access to a special education curriculum). After several tests and evaluations, it was confirmed that he could indeed be classed as having a general learning disability.

I had mixed feelings about that result. I absolutely acknowledge that my son has major difficulties with learning a lot of things. Most things actually. So I have no problem with the term ‘learning disability’. And his education absolutely has to be individualised for his needs, abilities and disabilities. This is part of why we’ve ended up homeschooling, rather than staying in the school system (this has also meant leaving Sweden, as homeschooling isn’t a legal option there).

However, having what in the UK is often called (general) learning disability is the same as the more internationally recognised ‘intellectual disability’, and regardless of which term you use it is generally said to mean having an IQ lower than 70. That stung to me, as I was often fighting to show my son’s abilities, and how I wanted people to see that he was able of more than often was assumed, and that he understood more than was assumed, etc. The ‘low IQ’ label felt like it went against that, and that is was somehow a ‘green card’ for those who our son as ‘hopeless’, or ‘less than’. The old word for ‘intellectual disability’ is ‘mental retardation’, and I could sense some people thinking ‘yep, just as we thought, the boy is retarded’. So yes, the confirmation of our son’s learning disability brought mixed feelings for me.

The Complexities Of Measuring & Diagnosing ‘Intelligence’

The current manuals used when diagnosing autism (DSM-5 and ICD-11) actually don’t use the term ‘learning disability’ at all, but rather the terms ‘intellectual disability’, ‘intellectual developmental disorder’, ‘intellectual impairment’ or ‘disorder of intellectual development’. I personally prefer ‘learning disability’ as to me, saying that someone is ‘intellectually disabled’ comes with the same connotations as ‘poor intellect’, ‘unintelligent’, ‘dumb’ etc. Whereas the term ‘learning disability’ rather communicates that *learning* (anything and everything) is very complex for this person, but that doesn’t necessarily mean that they have a complete and overall lack of intelligence (which in itself in a complex concept…). Especially in autistic individuals, it’s very common to have a ‘spiky profile’, with some exceptional abilities combined with profound difficulties. Like my son for example, who is nonverbal, autistic, with learning/intellectual disability. He’s severely disabled and does not score well on an IQ test. But when watching his favourite videos on YouTube he can navigate to his exact favourite snippets (most of them only a few seconds short) with extreme precision, so it seems he’s stored in his memory exactly where to scroll to on each of hundreds of clips, which – although not terribly useful – is surely a form of intellectual *ability*, rather than disability. Just to give one example. So I have no problem saying he has a general learning disability, as learning is very complex for him in all kinds of areas, but I still struggle to accept the term ‘intellectual disability’. Perhaps I might get used to it in time? Or maybe the terminology will change, as often happens, for better and for worse (and as always, it’s not so much the terminology as the meaning we ascribe to the words we use, and the effects of that on individuals, which is of importance.)

On top of autistics often having an uneven or ‘spiky’ profile, as mentioned above, it is notoriously complicated to measure IQ when a person has issues with auditory processing and other sensory processing issues, as well as impaired communication. This post by Bill Nason of the Autism Discussion Page also explains about this: IQ and Autism! Are they valid and reliable?

Autism With Learning Disability/Intellectual Disability – Are They Two Separate Things, Or Not?

Autism and learning/intellectual disability do exist as two separate diagnosis. However, the two can also exist together, and when they do, I think it’s fair to see them as two sides of the same coin. I find the way some people try to separate learning disability/intellectual disability from being autistic actually often comes across as ableist (not a word I use a lot, as I find it’s often used by others just to shut people up or dismissing them, but in this case I can’t really think of a better word to use). Yes you can absolutely be autistic and not have any kind of ‘intellectual impairment’. But it is a common co-morbidity (I think it stands at around 40% who are autistic with ‘intellectual disability’), and in the diagnostic manuals it says explicitly that it should be specified, and although ‘intellectual disability’ (or similar alternative term) can also be a separate diagnosis, when you have both they are – as far as I can see – quite intrinsically linked.

When looking at my son, for example, I can’t say that certain issues of his are because of his autism and other issues are because of his learning disability. He perceives and processes the world differently to most people and that is mainly due to his neurodevelopmental differences, which means that his brain, his nervous system and all his senses process things differently to ‘the norm’. These differences makes him autistic AND make learning complex for him in pretty much all areas. They are not two separate things. If his neurodevelopmental differences were less severe/significant, he would most likely be less obviously autistic as well as less obviously ‘intellectually impaired’.

You could compare it to anxiety, which can also be a separate diagnosis on its own. A lot of autistic people experience anxiety, but it isn’t a core feature of an autism diagnosis. You can be autistic without having anxiety, and you can have anxiety without being autistic. But when an autistic person has anxiety, I think most will agree that it doesn’t exist separately from their autism, but rather as a part of it. And I think it is fair to say that the same goes for when an autistic person has a learning disability/intellectual disability.

I hope my reasoning makes sense. We don’t all have to agree with each other on everything (in fact it would be very strange if we always did), but if and when we disagree, we can hopefully still have some understanding for our different perspectives.

PS. A short side note to clarify a couple of things related to this subject: The term ‘learning disability’ can be a little confusing as ‘learning disabilities’ can be all kinds of difficulties with learning, such as for example dyslexia, dyscalculia etc, whereas ‘general learning disability’ is an overall thing, and a synonym for ‘intellectual disability’. Also worth mentioning is that a young child who was previously given a diagnosis of GDD/Global Developmental Delay (or sometimes just ‘developmental delay), will usually (as I understand it) have that translated to general learning disability/intellectual disability as they get older.

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