A few days ago, there was a discussion on the Autism Science Foundation’s Facebook page in which parents of autistic adults with complex care needs were describing their children with the hasthag #ThisIsProfoundAutism. I asked to reframe the discussion to include people with multiple disabilities including autism in general, because it is rarely (but not never!) autism, no matter how severe, alone that causes a person to be completely dependent on caretakers. I then explained that due to the combination of my disabilities, I need 24-hour care, including one-on-one for most of the day.
Not surprisingly, I was quickly met with the question whether I was saying I needed 24-hour help with basic tasks such as eating, bathing, dressing myself, etc. Well, the Autism Science Foundation page is a public Facebook page and I didn’t want the people on my friends list (including immediate family) who don’t know this, to judge me for it, but the short answer is yes. While I, like presumably most “profoundly autistic” people who don’t have physical disabilities, am physically capable of eating and dressing myself for the most part with some difficulty, my executive dysfunction means I still need help with them. As for bathing, well, I basically need someone to wash me, because, while I can physically hold a washcloth in my hand, I don’t have the organizational skills to actually work out the ritual without a ton of supervision and even then it’d lead to a lot of meltdowns.
I did, incidentally, point out that I recognize intellectual disability as a valid additional disability that needs to be taken into account when I asked to reframe the discussion. After all, that’s most likely what’s causing these autistic adults to be unable to understand instruction and to be completely dependent. For me, it’s a combination of executive dysfunction, which is a direct autism symptom, blindness, mild cerebral palsy, and other things.
I also do recognize that the need for support with severe challenging behavior is not the same as the need for help with basic personal care. One does not exclude or necessarily include the other and one is not more valid than the other. I, for one, am somewhat more independent in terms of eating, dressing and bathing than my severely intellectually disabled fellow clients. I am a lot more dependent where it comes to the effects of my challenging behavior.
I also do not mean to say that autism on its own cannot possibly cause a person to need a lot of care. It can. I am reminded of a girl I read about on Dutch social media many years ago, who indeed had hardly any functional communication skills but did have an IQ above 85. She, unlike me, didn’t have any additional disabilities. She was completely left behind in the care system: she was too severely disabled for traditional child and adolescent mental health services, but her IQ was too high for intellectual disability services. Really, I should not have called for reframing the discussion to include those with multiple disabilities, but those with complex care needs in general.
That being said, I strongly disagree with those people who say that just because I can write, means I should have ignored the conversation, since it clearly wasn’t meant for me. The fact that I can write, does not make me not dependent on care providers and does not mean policy or lack thereof won’t affect me. I am autistic and that, along with my blindness and other disabilities, causes me to need the extensive care I get now.
A Multitude of Musings 
You know best what you need, fortunately, and some of those chat groups are pretty unreasonable.
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Thanks for the reminder. I should realize that these people don’t know me or my situation.
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It’s good that you’re speaking up about your needs and raising awareness.
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Thanks for saying that. It makes me feel so many conflicting emotions when people say that the mere fact that I can write on the Internet means I must not need as much help as I do.
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They don’t know you or your circumstances. You’re welcome
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Well done for putting your voice into the conversation! You had a right to ask them to reframe it! I would have too if I was reading it! Xx
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Thanks for validating me. That means a lot.
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I think you are great at explaining how your disabilities affect you, and I appreciate how honest and open you are about all this. My son is autistic with learning disability (intellectual/cognitive disability, whichever term you prefer to use). He would almost certainly ‘qualify’ as what they would describe as ‘profoundly autistic’ in the group you’ve mentioned here. I would say that his learning disability, just like his issues with executive functioning, is interwoven with his autism to such an extent that it’s not possible to say that they are two different things. So I see his learning disability as part of his autism. Not all autistic people have a learning disability, of course, but there are also many other sides to autism which not all autistic people have. My son’s whole experience of the world around him is profoundly affected by him being autistic – the way his senses perceives his surroundings, the way his brain interprets sensory input of various forms, the way his body functions, etc. His learning disability (which btw is not easily measured using intelligence tests, but that’s another discussion I think) is, as I see it, a symptom/effect of how differently his body and mind perceives and processes information, compared to how a ‘normally’ functioning nervous system works. So in my opinion, it isn’t possible to say that it’s his learning disability and NOT his autism which makes him profoundly disabled, because his learning disability is intrinsically linked to him being autistic.
That’s how I see things, I understand that not everyone will see it the same way, and that is okay. As long as we can be respectful about having different perspectives on things 🙂 x
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Thank you so much for explaining your son’s situation. That makes a lot of sense. Really, like I said at the end of my post, I should have said “complex care needs” rather than “multiple disabilities”. My point was really that just because I can speak (most of the time) and write on the Internet, doesn’t mean I don’t need a lot of support. In fact, like I said, I in some ways need more support than my severely/profoundly intellectually disabled fellow clients.
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I would be very careful presuming your son has an intellectual disability based solely on what the doctors say. Autism and ID can be very hard to identify even though they’re so very different: https://www.spectrumnews.org/features/deep-dive/the-blurred-line-between-autism-and-intellectual-disability/
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Yes, thank you, this is very close to how I see it (and also why I put a caveat in about how testing his intelligence is problematic in itself). His cognitive abilities are very uneven, he’s got an amazing memory for certain things, while finding some things almost impossible to learn/grasp. He processes the world so differently to ’the norm’, and I would say that is due to him being autistic. So his difficulties with learning etc – which mean he’s classed as having a learning disability – are, as I see it, an expression/result of his autism. Blurred lines indeed. (While in other individuals, you can have autism without learning disability, and learning disability without autism, so yes they can be totally different things too. In him I believe they are intertwined, two sides of the same coin.) x
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This is all so interesting. While I score as having a verbal IQ within the above-average to intellectually gifted range, there are certain cognitive areas with which I greatly struggle. For example, I have always wondered about my performance IQ, but this can’t be measured due to my being blind. I am pretty sure I’d score below-average on that.
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I think you might also like this blog post by Amy Sequenzia, who’s a nonspeaking autistic. She was assessed as having IQ below 30. https://ollibean.com/amy-sequenzia-matter/
A lot of the time (even most of the time), what looks like ID turns out to be extreme challenges with performing purposeful movements and controlling their bodies. The person might be able to perform learnt movements OK but has real difficulty making new motor plans. They mightn’t be able to control their hands to point purposefully to what they intend to point to. A lot of people mention that they couldn’t feel where their limbs where in space when they were young, making it impossible to perform many tasks without help for this aspect of their condition. They also describe difficulties controlling impulsive movements (e.g. turning light switch off and on repeatedly, unrolling whole toilet paper roles, etc.) which is often interpreted as meaning they don’t understand the world around them, when actually, they are usually highly engaged in the world around them, picking up on everything, and are highly empathic.
Damon Kirsebom describes his experience having “severe autism” in this video (I’m not sure about accessibility on youtube so will also post a an article by Damon that covers similar ground. I’ll put that link below this one, at the next paragraph): https://www.youtube.com/watch?v=CtK9paFGUjc&t=2s
Here is the article by Damon: https://i-asc.org/the-mind-of-a-hockey-player/
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