Cont (2) autism diagnosis and descriptions

[OneFrenchEgg]

Continued from previous thread

Originating thread www.mumsnet.com/talk/am_i_being_unreasonable/4745242-autism?reply=124189935

Just pulling up a stool

Hi guys, just place marking and makingsure I get updates x

autisticmama.com/neurodiversity-doesnt-exclude-your-autistic-child-you-do/

First hit when I googled 'does neurodiversity exclude severe autism' and I know that my search term isn't brilliant but I wanted to get results that matched my internal thinking out loud.

It’s a bit like man splaining but (for me) WAY more offensive. I read as far as I could but I’m sorry I find parenting blogs/gurus daft most of the time and this one is just so silly.

Yes I didn't like it. Plus I started reading Judy Singer and she says she was always thinking about HFA/Asperger's (remember this is the 90s) so sounds like neurodiversity was always exclusive? I'm trying to learn about what actually was intended before a load of people hopped on and spouted off.

There will always be people who think they “get it” because they’ve thought about residential care, or capacity, or what it’s like to have a child who will not “grow up” in the way others do, for five minutes or chatting over a drink in the pub. They are SO obtuse.

I don't know what's really the correct word for where I am on the spectrum. I guess it's the more HF part. But I read that article and, what a load of patronising twaddle.

Mothers, you're doing it wrong! Again! is what she seems to be saying. And that is unfair. She discounts mothers' own experiences of their lives.

Those of you with older children, when did you know the autism was severe?

I don't know if DD1 has severe anything. She's classed as having MLD. She has ASD. But she doesn't seem very 'moderate'. We can't rely on her to wash, I have to wash her. Ditto teeth. Can't let her get her own breakfast because she'll impulsively serve far too much of Nutella, etc, or overflow her bowl with cereal. She can't cope in college without in a 1:2 ratio, so they had to draft in extra staff. Can't be left at home alone. Can't go out with her because she doesn't cope.

Life is pretty restricted, tbh and I can't see it getting easier.

@doadeer 2 years old.

What made you know?

My son is 4, non verbal, no effective communication system, he doesn't respond to pictures or makaton. We have started using an aac but he isn't interested yet.

We find it so hard to know what he understands. Compared to the other autistic children I know my son seems to struggle even more.

How do you know the severity?

@ISaySteadyOn

I don't know what's really the correct word for where I am on the spectrum.

Start by learning about what the spectrum refers to. It's not something people are placed upon. There is no me here and you over there line. The spectrum is about how your autism affects you.

Reading Judy Singer's book is actually really interesting. It is the 90s so context is emerging recognition of ASC in people and Asperger's is a newly discussed diagnosis amongst people.

@doadeer also 2. We started having investigations at 18 months because we thought he might be deaf, he had no interest in interacting with anyone and was non verbal.

It was very hard at first because the only way he could communicate was through his behaviour and it took a lot of trial and error to work out what behaviour meant what. We're still working on that now!

At 4ish he learnt to sing. Then he learned to use quotes from Disney movies as communication. Again, it took a while to figure out what he was trying to tell us. Now he can read and write basic things and is verbal-ish, to the extent where he can tell you he wants or doesn't want something but he still can't hold a conversation or answer most questions. If he got lost for example he could tell you his name but not where he lives or who/where his caregivers are.

It's still very challenging now but it is easier now he is able to communicate a bit more, sadly I don't he'll progress much more than where he is now, we just have to work with what we have.

I was diagnosed with Aspergers as an adult.

Whilst it does affect my life, (I was diagnosed following a significant breakdown and in hindsight I've been "weird" all my life) I obviously present very differently to more severe autism.

I understand there's an argument for promoting better understanding of the range of severities that now fall under the ASD umbrella, but I also feel uncomfortable that more functional people are the ones dominating the discussion, when we are in a position of privilege

Personally I prefer using the old fashioned term of Aspergers to explain myself, as I find people tend to understand it better. But then I've been told that's offensive and I'm distancing myself from other autistic people out of abelism. But I've also been told off for saying "high functioning autism" too

So I don't know what the more correct/PC/better language to use is :(
People have different needs and I think it's not necessarily a bad thing for language to reflect that

I wouldn’t agree with this at all @kindercup i do think people occupy different places on the spectrum and that it refers to the intertwining of their deficits and gifts so the whole cane be more than the sum of the parts. Eg if we used three disabilities like deaf, blind, and mute, someone who was very visually impaired, partially deaf, with no speech would have very different needs to someone with mild VI, totally deaf, but verbal.

That's what I was trying to get at in my post but you articulated it so much better. Thank you!

Having a diagnosis of Asperger’s isn’t offensive, as it is still in use.

The disabilities you've mentioned are easier to separate though. I'm lumped in with friends of mine who work full time, have long term partners, kids etc. They don't have the sensory issues I have. I can't unlike them attend groups because I can't cope with noise or crowds

I'm classed as partially sighted. Like my friends with a different visual impairment who are registered partially sighted, neither of us are able to drive and struggle with things like reading. Yes we see differently but our needs aren't wildly different.

It’s the interaction of the deficits (and gifts) that makes it a spectrum.

I posted about my DS on the previous thread, and how autism or ASD doesn't seem to fit him. I feel fraudulent using the diagnosis and it also doesn't help him. People, not just the public but teachers, assume he will have stereotypical autistic traits (rigid thinking, repetitive behaviours or interests, meltdowns/shutdowns, routine oriented, needing extra help at school, being fearful to try new things - he's trying a tea cake for the first time as I type this!) He doesn't have any of these 'traits', so describing him as being autistic does not seem to help him or the understanding of people around him. People seem to understand him much better when I say he struggles with his social skills, or he is Aspergers or 'aspie'.

I think the current system fails both ends of the 'spectrum'. And whilst the autistic spectrum isn't linear, in my opinion there are clear differences in functioning between what most people would describe as 'high' and 'low'.

I think the suicide rates amongst non LD autistic women speak for how difficult navigating life can be for people who are expected to participate in mainstream society. It's a completely different challenge, and not comparable to the disabled people with limited communication, physical challenges, no sleep and their carers. I do think more nuance would help, but not going back to Asperger's and the 'little professor' and quirky characteristics associated with it because that denied any disability.

Life expectancy for individuals with autism, learning disability is I think 40 so while it’s in a different way I would imagine life isn’t well navigated for them either.

@OneFrenchEgg I don't necessarily think going back to Asperger's or quirky characteristics is the answer, but it's the only terminology we can currently use which describes DS, and which people understand. Not just member's of the public, but care givers, teachers etc. Using the terms 'ASD' or 'autistic' lead to people making unhelpful assumptions, like school stating he has problems with routine change (he categorically does not). Which is why I question how much the diagnosis is currently helping him at present, and how much it will help him in the future, when his traits definitely fall under the 'unusual social skills' rather than anything else that is associated with autism.