To think autistic people don’t understand the impact they have on people

[SpectrumBlues]

Is a pretty appalling statement to make?

(On the guest blog thread about the under-diagnosis of autism in women and girls)

As an autistic person, I find it hurtful and also deeply unfair. But am I completely naive - are we really just viewed as horrible sub-humans? Should I give up trying to argue that we are just people who process the world differently? Is the fact that I have had to suffer a whole load of bullying and pain by NT people because I’m different irrelevant?

I know this is a huge indulgent pity party but I just don’t get why hurtful comments are continually made about autistic people in this website and it is accepted.

I’ll now await deletion.

I understand the social model of disability. She does not mean that.

I think it’s fine not to find your autism particularly disabling but fairly silly to think that’s a universal experience.

And I know there'll be a parent coming along to tell me that because I can write this that my view is invaild, that my autism is most definitely mild compared to their non-verbal child who has severe learning difficulties, I'll just say this, you have no idea of the difficulties a person has in real life. Being able to type words on a screen tells you nothing about a person's real life capabilities.

I’m a parent of an (adult) child with ASD. They were diagnosed when they were around 7yo from memory give or take a year. As I said before they identify with Aspergers though, don’t tell them they have autism if you know what’s good for you.

I will say, as a parent, I DO know the difficulties they experience in real life. I DO know their real life capabilities. To say if you don’t have autism you have no idea is incredibly naive. Holding it together elsewhere and dropping the mask at home means parents are quite in the know in this regard. No, we will never know what it’s like to experience having a form of autism but that’s not to say we don’t have a shitload of experience with those that do.

My child with autism is going to be very successful in life as per standard definitions. However, despite this, life will never be easy for them. To get to this point it’s been one HELL of a ride. Hell for them having to navigate each day. Hell for us parents. Hell for siblings. And in our case, hell for the school in the earlier years.

My child will be successful. The only reason for this in their case is because of the sacrifices everyone around them has willingly made. That’s the reality. A shitload spent on specialist developmental paediatricians in the early years. The hunt for a school that genuinely embraces ‘differences’ and believes in working with individuals to fulfil potential. The enormous cost that comes with that (in our case private as we couldn’t find a public school that fulfilled this brief). The virtual full time job of connecting with other parents to enhance social opportunities for our kids that didn’t come naturally. Constant liaison with school so that we all worked as a team with a common goal. A shitload spent on specialist mental health assistance in the latter years.

Yeah, as a parent I’m not coming in to tell you that your view is invalid. It isn’t. Absolutely not. But to think we DON’T have any idea of the difficulties or capabilities ‘our’ person with autism has is a bit rich. Yes, we do have more than an ‘idea’. In our case our assistance in this regard, to assist with these difficulties, realistically means a 10-15 year delay in retirement plans, siblings who are drawn into the support network and many other complex interactions building long term support networks for your child. So the blanket thinking that if you don’t have autism you can’t possibly understand, yeah, Fuck. That.

Of course. Everyone views their conditions differently. I am disabled and do not subscribe to the social model of disability.

I should add, there has been enrichment all round. So many thing that our child with autism has added to our lives and so many things that we and their siblings have added to their life. But the reality is it has all come at a cost to BOTH sides.

but these are not an indication of your IQ, they are an indication of how severely your disability effects your day to day life
I didn't say that they were anything to do with my IQ?genuinely confused

Is it perhaps a very poorly worded way of saying some struggle with empathy or something like that? It would probably be fair to say that I don’t understand the impact I have on others (purely because I’m really not with it enough to care at the moment). Because the way it’s written makes it seem like they negitively impact society just by existing which is a bit extreme.

@BlooShampoo I think there may be some confusion on your end as to what high functioning means. HFA means your IQ is above 70, it’s nothing to do with how well you pass for NT when stressed, or if you can remember to shower.

I’ve never heard that definition before, to be honest - I’ve only ever heard people use HFA/LFA in relation to executive function. In either case I’m still not keen on HFA/LFA labels and will not personally be using them or acquiescing to people applying them to me.

I thought the IQ 70 threshold was to do with learning disabilities, not autism? Surely if someone is autistic and has an IQ below 70, it just means that they are autistic and have an LD as well, not that they have more “severe” autism?

So the blanket thinking that if you don’t have autism you can’t possibly understand, yeah, Fuck. That.
Would you tell someone who was completely blind that you understood how they felt just because you had a blind child? Or someone that was permanently in a wheelchair? You may have some understanding in that you can see some of the difficulties they cope with but unless you can actually be inside their head living their life then no, you can't understand. And you can fuck that.

@FriarTuck it’s glaringly aparent that many posters who are autistic on this thread have little or no understanding of the lives of less able autistics. That there’s very little understanding that communication and intelligence are not so closely linked that verbal/non verbal are not shorthand for severe/learning disabled or anything else. It’s similar in the NT community the difference is that they don’t assume to know better than people who support their loved ones day in day out. I can say FUCK that too. Does it aide comprehension or understanding?

@BlooShampoo google might help, but the people who you hear using the terms are not using it correctly. However it probably means we’ve been talking at crosses purposes.

Would you tell someone who was completely blind that you understood how they felt just because you had a blind child?
Not an accurate analogy, better would be telling someone with tunnel vision that you understand some of the impact because your child was sightless.

Itwouldtakemuchmorethanthis
I find your tone to be consistently unpleasant. I’m always happy to be disagreed with, but if your principle discussion tactic is to sneer at others, I’m not really interested in continuing. I spend a lot of my time discussing ideas with people whose views I do not share, and the overwhelming majority of them manage it in a civil way. I have better things to do with my evening be sneered at, so ima peace out now.

I have better things to do with my evening be sneered at, so ima peace out now.
I think you're right there Bloo. There's a lot of sneering and I'm damned if I'm going to be told how it feels to be autistic by people who aren't. I hope all of us autistic souls / Aspies have a pleasant evening free from tosspots. I'll be on the sofa with DDog.

How is it sneering at you to say that your misunderstanding of the terms HFA/LFA means we’ve been talking at cross purposes?. I’ve explained my understanding of the terms, which was brought up around midday by Ellenborough. If your acquaintances use medical terms to mean something different than they are of course it’s going to lead to confusion. Google will probably give you a more reassuring definition than I can.

I'm damned if I'm going to be told how it feels to be autistic by people who aren't similarly I would not allow a highly articulate autistic to present their experience of autism as a universal truth, especially if I think they have limited if any experience of more dependent autistics.

Lellow - for you

Bloo - I would assume that Ellen missed you saying already that you are autistic, not that she doubted you were.

Autism is just to big of a spectrum, i never use the diagnosis for DS2 anymore and stick to severe learning difficulties. Awareness whilst it helps also creates a false sense of knowledge. The first thing that should be learnt is that their is no neat groupings. But how many adults who may be clumsy with their language also have autism. There must be many adults oblivious to their autism. DS1 is very honest and is to worried about his impact on others whilst he struggles he should still have an independent life whereas DS2 is extremely violent and is currently being considered for residential school, they are under the same umbrella but are miles apart.

Right now, Ds has no clue about the impact he is having on me. He is absolutely oblivious to the distress I am in. He doesn't care that I am sat bawling my eyes out. He just wants what he wants.

I get it's change of routine (school's out) I get this weekend is different to usual, but damn it I just want to go and see my parents for the first time since Christmas. I do not want an 11 year old screaming obscenities in my face and trying to kick my door in.

@Itwouldtakemuchmorethanthis

It was actually Asperger who came up with the “little professor” stereotype to try and save his patients from the “final solution” in the hopes that the Nazis might let them live for their possible usefulness. It didn’t work, but the idea remains.

This article in Nature might be helpful in assessing whether Asperger’s intentions were genuinely well-intended

www.nature.com/articles/d41586-018-05112-1

I’m don’t feel warm towards him.

Written by Baron-Cohen? . I find most of what B-H writes banal and unhelpful at best. I WILL try and read it but perhaps not tonight. He tends to make me furious which won’t help me be calm for those that need it.

Have you read any of Aspergers ideas? If I could read German I would love to read it in the original. There is no question that hideous unthinkable things were done to his patients in the name of science. I’d not have them die in vane, but I do understand if others feel differently.

Ok, takin into account your antipathy towards SBC (I know you’re not alone, my reference point was the esteem of the scientific journal), here is the original publication where it describes Hans Asperger’s active involvement in child euthanasia

molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0208-6

So given the number of disabled children that did die (horribly and in great pain) in vain due to Asperger’s complicity, I’ll maintain my stance of not seeing him as some sort of hero. I do understand you feel differently.

@KeepOnKeepingOnAgainandAgain thank you ❤️ Absolutely beautiful. How old is he/she? Can you tell me a bit about their personality? X

Ah yes Baron-Cohen, the idiot who came up with the idea that autism is an "extreme male brain" and that we're all systemizing little robots who lack empathy. Yeah, I don't think I'll take his word on anything autism related, not least when he's a big part of the reason it's so hard for autism in girls to be recognised.

Itwouldtakemuchmorethanthis - Have you read the book Neurotribes? Because if you haven't there's a fair bit about Hans Asperger in there. Not everyone agrees with the idea that he was a Nazi. If he was then he wasn't a very good one, he wasn't even a member of the Nazi party when doing so would have aided his career significantly. It was actually somewhat unusual for a doctor in Nazi Germany (and Austria) not to be a member of the party, doctors were among one of the professions that quite readily joined up and quite early too.

I think it's naive to suggest that any doctor (whether they were a member of the Nazi party or not) could have avoided being part of the euthansia program when they worked in the field he did.
It's rather ironic that both of the men involved in identifying autism have skeletons in the closet. The difference is whilst Asperger was working under a fascist regime Leo Kanner had no such excuse for the dehumanising way that he treated the disabled people in his care. Even more ironically Kanner was Jewish and had he not already left Germany in 1924 he would have been persecuted by the Nazis, a fact which didn't stop him from persecuting disabled people in the US though.

History isn't black and white, it's possible that Hans Asperger was the the man who gave autistic children a place to learn and be themselves, who recognised the fact they actually had talents and not just deficits, and still was the same man who was part of the machinery that sent other children to their death. It's not palatable, but then reality rarely is. I don't hold him up as some kind of hero, but neither am I willing to condemn him on the say so of one paper.

@DothehappyDance it is a horrible stage when anxiety wins over everything else. Ds2 used to be like that at 11 (I remember a dreadful holiday with him screaming at ds1 nonstop) but he is not like that now. I'm sure I was like that too, on occasion. You are allowed to feel it is awful and yes, selfish. But you can probably talk him down if you break it up into small steps. Transitions are very difficult for people with autism. I'm travelling on Monday and dreading it. Ds2 now loves travelling and changes of scene. He is 17.