Lots of very lovely and clever people have made videos to share some awareness for Autism Awareness Day/Week. They are really good, I’ve watched maybe a dozen now, and either I or my kids feature in two.
The problem is, if the video has children and/or adults who would have typically be described as more severe autism, then people from the opposite end of the spectrum are saying that this does not represent them and it’s wrong.
If the video features children and/or adults who may once have been diagnosed with Aspergers, who maybe have fewer care needs, then parents and people with greater needs are saying "hold on, this video does not represent us at all".
Some videos have a mixture of people from all over the spectrum, and the response to those videos? "Well, I didn’t see anyone with needs like mine in there so that doesn’t represent me".
Ever felt like you can’t win? That’s exactly how I feel recently.
So I’m having a long and complex conversation around the diagnosis and use of the word ‘Autism’. Does ‘Autism’ describe every single person who is autistic?
There is a huge amount of pressure on parents not to use any descriptors such as low functioning, severe, classic, high care needs… Simple because if you use that then it implies that at the other end of the spectrum they must all be high functioning, not severe, non-classic (I don’t know what that word is so let’s stick with this for now), low care needs.
Read the thread below that I ripped from Twitter and then come back to me…..
Good to have you back.
So here’s the problem. A strong group of people who are autistic (diagnosed or self-diagnosed) are giving parents a lot of pain over their terminology and the fact they speak for their children. Many feel that parents have no right to speak for anyone on the spectrum, but they have every right to speak for our children. Even though they have never met them…
I think some of them genuinely think they are Autism Whisperers or something.
It’s a problem, we are having our voices removed – well at least they are trying, but to be fair people have been trying to shut me up for 45 years without any success so good luck with that.
Over the course of several long discussions on Twitter this morning, all very polite, I discussed ‘options’. We can’t use the word ‘autistic’ to describe the needs and abilities of everyone who is, indeed autistic. That’s like someone asking you what car you have and the only descriptor you are allowed to use is ‘car’. Try it… Suddenly we all have the same car? Well no, of course not.
Heres another – go out to eat, any restaurant you like, but when asked what you would like to order all you can say is ‘food’. No other names, don’t describe what you want as you are discriminating against other types of food.
Come on, this stuff doesn’t work does it…
We talked about options. What could we do? One was to take the key ‘categories’ you might need to use to describe someone’s needs. So we have Communication, Behaviour, Mental Health, General Care, Personal Care, Social, and Sensory Needs.
We started with a smaller list of 4 but people kept adding them. So then we need to use a scale to explain the level of each need. 1 to 5 should work. Only, does ‘1’ mean some needs? What if they have no needs in a certain area – they can take care of their own personal care needs without any support. So let’s go from 0 to 5.
That’s 6 options, for 7 categories. So that will be, unless I’m wrong, 6x6x6x6x6x6x6
So, in simple terms, you could list every possible variation of those 7 categories and the 6 options for each, and you would have just under 280,000 results. You could then list them, and if someone said they were at point 132,994 on the Autistic spectrum you could look up their level of needs in each category. I need to point out that I left out Learning Disabilities from the list, and if you include that category the number of variables reaches just under 1.7million.
Another problem is people with lower needs in each category would have a lower number, and that’s going to be similar to saying they are at one end of the spectrum – no? So one answer would be to just randomise the numbers. They would be meaningless unless you could check against the database to find out what the number represented.
I’m mostly joking here, this isn’t a viable idea at all.
We can’t give people a number, but surely we can’t just say everyone is ‘autistic’ when there are potentially 1.7million levels of variance across the spectrum. No wonder people have started to draw the spectrum more as a circle and plot points on it.
So what can we say? We could list the needs – Ben is autistic (I can’t use a descriptor remember), he is non-verbal and has very little understanding, severe learning disabilities, he’s hypersensitive, has complex behavioural needs, complex mental health needs with severe anxiety and depression, and relies on us for all of his care and personal care needs.
It doesn’t roll off the tongue that’s for sure. We also can’t explain any of that by using the word ‘autistic’ can we? And here comes the next problem – if we say all that for one person, and the next doesn’t have those needs, do we list them such as ‘no mental health needs, no learning disabilities, no behavioural needs and so on, which would make the person feel like their needs were somehow diminished. Or, do we simply say they are ‘autistic’, which after all is what they want, right?
If we say that but don’t list any other needs are we understating their needs? Are we offending them by not being descriptive of their needs or how they would like help and support?
Another big issue with this route is people with a list of needs are almost giving away their autism diagnosis to people on the other end of the spectrum. There is a group of people who want this, they want to claim the word ‘autistic’ and let young people like Ben explain their diagnosis through the listing of their needs, in particular, learning disabilities, as this is very often the key differentiator. Being autistic without learning disabilities is very different from being autistic with learning disabilities.
Do people with learning disabilities and other support needs ‘give up’ the word ‘autism’ if it’s being used to describe people with a completely different level of need, almost a completely different diagnosis.
This isn’t by any means everything in my head about this complex discussion. It really is an issue, and it’s gathering pace. We can’t use medical models to describe the ‘level or type’ of autism, we can’t use descriptors, and if we list other needs we are somehow discriminating against those who don’t have similar needs.
I don’t have an answer if that’s why you are still reading. I want it to be a discussion but if you come in to be an asshole about it I will just boot you from my page. I am more than happy to listen to anyone and hear any thoughts on this, but it needs to be a friendly debate. If you are here to say you are right and everyone else is wrong take your opinions elsewhere as you are actually wrong. I know this because there is no answer, we are simply discussing how complicated it is.
I know that some people think they should own the word, I know that anything else offends others, I refer you all back to my food example, try it, see how far you get. Or consider the car example – another pointless exercise that will get you nowhere.
And that, sadly, is where we are with the word ‘autism’. To some, it will always describe people who have amazing memories or people who can count how many matches are on the floor if they are dropped from a box. To others, it will mean describe young boys wearing ear defenders with some speech and lots of special interests (they can’t be girls and can’t be adults). Others still will always see someone sat in a corner rocking back and forth and stimming, maybe hand flapping.
Autism does not describe Bens needs. It does not describe Ayesha’s. Sammi’s are not explained by the word.
Neither are Isla’s. Or Esmae’s. Or Aiden’s. Or Ross’.
Asa’s needs can’t be described by the word, and neither can Sasha’s, Tyrus’ or Noah’s.
Even Toby and Daisy’s needs are not explained by this one word.
David, Riley, Sonny, Esmae, Xavier, Jude, Tommy, Chris, Zac, Elizabeth, and so many other amazing people, kids and adults, are all just so very different and saying they are all ‘autistic’ really doesn’t give you a clue as to how they will communicate, how they will react, and what support they might need.
I’m sure my daughter is autistic but nobody has bothered to diagnose as she has significant LD – so that skews the stats on the number of people diagnosed and how they present!
I mentioned your post to my husband and he said it’s a problem with the word ‘spectrum’! Which in science is normally linear and therefore makes people think of a linear scale? He reckons if neuro operation is to be considered more 3D it needs to be considered a ‘field’ (in the physics sense of the word).
I think they are still at the top of the iceberg about how the brain and individuals processing works and it’s even more tricky if you can’t use any descriptors – how can we learn if we don’t discuss differences!?
My son is autistic and has learning differences which are intrinsically linked to his autism. If he wasn't autistic, I think he probably wouldn't have his learning differences. But some people who are autistic will not accept that my son's version of autism is just as valid as theirs, because they see him as unintelligent and they're are afraid to be connected with that. So they will tell me that my son's learning differences are completely separate from him being autistic. And the most ironic thing is that many of those "actually autistic" who shout about what is or isn't allowed to be called autism, don't even have a formal diagnosis themselves! They just identify as autistic, and claim that a self-diagnosis is just as valid… Well no, not when you're trying to tell me that my thoughts on autism are not as valid as yours! Autism is the name for a diagnosis, there are diagnostic criteria which, if you fulfil them, mean that you can be called autistic. While you don't have a diagnosis you can call yourself neurodivergent, for example, as that is NOT a diagnosis. And, if you don't see being autistic as a disability, then you don't need a diagosis. The term autism/autistic is a diagnosis, not a label, not a quirky personality trait to make you more interesting. There you go, that's my rant on it x
My stepson (who lives with his dad and i) is autistic. He will be 13 in July. He will brush his teeth before bed without prompting but does not understand the need to brush his teeth in the morning and if left to his own devices then brushing in the morning would not happen. He does not see the need to bathe and again he would not do so without prompting. He can wash his body, but lacks the motor skills to wash his own hair. He is verbal, but can not hold a general conversation. He can talk for hours on the things he finds interesting. He does not know how to explain any emotions he is feeling. He is in an autism specific school as he would not cope in mainstream. Educationally and emotionally he is 6/7. He does not understand the value of money and thinks spending £5 is the same as spending £5000. Whether he would be described by professionals as high, medium or low on the spectrum I don't know. What I don't understand is how an autistic adult could profess to know more about my stepson having never spent any time with him, than we who live with him do.
What infuriates me is when my grandchild is told they cannot confirm he's autistic as he doesn't tick all the boxes- what bloody boxes ????
6 months ago
Something else I’m helping out with this month.
Autism – it means different things to everyone – I don’t really ‘do’ Autism Awareness these days, all I care about it making sure my kids live their best possible lives 🙂 … See MoreSee Less