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.

No one is trying to dismiss Aspergers work - rather, we’re just not hugely keen on honouring him. And one would hope that everyone would agree that understandings of autism developed in the 1940s need updating

If you are posting on a forum like this and at this speed it would be extraordinarily if you had an IQ under 70.

I don’t know who this “We” is you talk about. Are you suggesting your view of aspergers work is universal

I personally think he was an extraordinary man and I’m not sure staying with his patients through the horrors wasn’t an act of extraordinary bravery and kindness. I know my own child would have gained comfort from the familiar and that I would feel disgusted if he had run when he could.

Could you point to where I claimed that my IQ was under 70?
“We” = me and the many, many other autistic people (with very varied support needs) who discuss issues a great deal. Acknowledging that a huge number of us share these views is not remotely the same as claiming it as a universal viewpoint, so I don’t think that was a well-intentioned interpretation at all

I don’t give myself any functioning label, it makes no sense to me. I’m good at some things, and very bad at other things, and okayish at quite a few things. Overall I’m a pretty middling individual
My point was you are very obviously HFA (if you’re autistic) it doesn’t matter how you ID. Sorry if that wasn’t clear.

You don’t actually know me, and even if you did, you have no right to make that declaration. How I ID does actually matter. HTH.

“High functioning” is just another tactic used by non-autistics who think they know best to shout down actual autistic people on the grounds that they don’t know about “real autism”. Nah thanks. Not accepting that.

Let me re-phrase it, then to say 'at the mildest end of the spectrum.' So mild in fact that she probably wouldn't get a diagnosis, or try to seek one.

Yeah, people will pick you up on that, because autism being less "visible" doesn't make it mild in any way. And honestly I'm really sick of reading people say stuff online like "oh well I think my child/relative/partner is on the spectrum but it's so mild they wouldn't get a diagnosis. No, they wouldn't get one because guess what, they don't have autism. Don't meet the triad? No autism - it's that simple.
People saying that crap makes me want to scream at them THERE IS NO SUCH THING AS MILD AUTISM.

And I'm sick of people equating Aspergers with "mild autism" and "not that really affected." There is no mildest end of the spectrum. 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.

Ellenborough - The defintion of supposed "high functioning autism" is a person who has an IQ over 70 and with no significant speech delay, that is they would have began to speak before age three. It's a very unhelpful term and it just confuses matters even more. Why it's gained such currency as a phrase I don't know because it's not even a proper diagnosis, no-one gets diagnosed with HFA because it doesn't exist in any diagnostic manual, it's simply a very unhelpful functioning label which creates more problems than it solves.

I don't have a problem with needing to distinguish different presentations of autism, but functioning labels are the worst way to go about that. People hear high functioning autism and assume it means "autistic but really smart and quirky with no real problems."
It's equally unhelpful when people assume that being non-verbal always means a person has learning difficulties.

Itwouldtakemuchmorethanthis - I agree with your point about Hans Asperger, his work is far too important to be forgotten about. For one thing everyone seems to overlook the fact that it was actually Asperger who recognised the concept of autism being a spectrum long before anyone else did. He had a much better understanding of autism than Kanner did, who had an absurdly narrow view of what autism is and how it presents.

I don’t give myself any functioning label, it makes no sense to me. I’m good at some things, and very bad at other things, and okayish at quite a few things. Overall I’m a pretty middling individual
Me neither, though partly because I don't have the self-confidence to be able to claim to be good at anything which is what the 'high' bit makes me think. But low and high are remarkably condescending terms - it makes it sound as if 'low functioning' is basically a vegetable and 'high' is a genius. We have no idea how a 'low fucntioning' individual really feels or understands because they lack the communication skills (generally) but that doesn't mean that they don't have high levels of intelligence. It's akin to saying that someone with locked-in syndrome is thick just because they can't express their intelligence to you!

And can we please get away from the idea that the autistic spectrum is a line with not at all autistic at one end and really very very autistic at the other. It isn't. It's more like a spider's web with different AUTISTIC people placed at different points depending on their own individual autistic qualities. You're not a bit autistic, you're either autistic or you're not. And if you're not autistic you're not on our spectrum. Have your own sodding spectrum!

Aspergers is no longer given as a diagnosis

Correct, but some of those who were diagnosed under that DSM refuse to give it up. My (adult) child being one. Try telling them they have autism. Double dare you. They firmly refute that they have autism but identify strongly and are happy to tell all and sundry that they have Aspergers. Who am I or anyone else to tell them they are wrong and in fact every medical professional they have come across including those involved in mental health agree wholeheartedly and claim those involved in the DSM change must either be deranged or have nothing to do with patients in a clinical sense.

No such thing as “mild” autism, only “autism which isn’t obvious to me” or “autism which I find to be a harmless oddity”

Of course people can identify with “Aspergers” if they so wish. I was just pointing out that it is no longer given as a diagnosis. It was made clear when this was changed that people who were diagnosed with aspergers and identified with that label that this would not have to change. I have no desire to stop anyone identifying themselves as they wish to. However, if someone says that I have aspergers, I correct them - I am autistic.
I’ve met so, so many supposed mental health experts and professionals who didn’t have a fucking clue about autism. Some know a great deal, but being a medical professional does not necessarily bestow any great autism-related insight or expertise

I think many people view the autistic spectrum like this

@SpectrumBlues true
I also think that there’s an assumption that all autistic adults who can communicate and express their ideas were “little professor” quirky savants as children and that they couldn’t possibly have had any real difficulties, or understand what “real” “severe” autism is like

Let me re-phrase it, then to say 'at the mildest end of the spectrum.' So mild in fact that she probably wouldn't get a diagnosis

Bingo! ~ Waves to JanMeyer

the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

But there is a big difference between autistic adults who are non verbal and totally unable to carry out even basic care for themselves, and my friend who is autistic works full-time, lives by herself and has friends and hobbies. Of course my friend's autism affects her, but for her it makes sense to say autism is just a different way of thinking. For someone who is non verbal and can not carry out the most basic self-care tasks their autism is obviously a disability.

I mean... I also live by myself, and have friends and hobbies and all that, but I wouldn’t say that for be being autistic is only “a different way of thinking”. I had an incredibly awful time growing up - bullying and so much more - and a lot of that has affected me into adulthood. I can mostly, kind of, hide my sensory issues so as to be more socially acceptable, but at a huge, huge cost to my energy levels and mental health. I can do self-care tasks like bathing myself but again, it costs me a great deal in terms of exhaustion. A lot of what I technically can do is extremely overwhelming.

I would be considered “high functioning aspergers” by some. I have a professional job, am married and have hobbies.

The secret is mask mask mask ...

To most people I’m simply quiet, a bit quirky and don’t like socialising. They don’t see me at home, flinging off the uniform that has been driving me insane all day in order to put my baggy loose clothes on. Obsessing over minute details of my current fixation (Doberman dogs, no I don’t even have one) flapping my hands in Asda as I’m so fucking stressed by my senses that I’m close to doing a runner. Banging on and on about the same subject relentlessly because it’s my current obsession and I’m aware it’s doing my husbands head in but I can’t help going on ...

Once the mask comes off, I don’t appear so high functioning at all

@LellowYedbetter
Yes!!!!
I bottle up so much until I get home. Always have. And anyone who wants to tell me that I’m clearly “high functioning” should see how long it takes me to execute the most basic daily , or the sudden waves of paralysing exhaustion which hit me some days when I’ve had to try and be punctual for something

I have a group of local friends - we all have children with autism of similar ages. Some of our children are in mainstream school, some of them are in special schools, some of them are non-verbal, some of them aren't.

For those who are doing well academically, autism is a lot more than just 'a different way of thinking'.

*daily tasks

The problem is in the lack of acknowledgment of the irony that autistic people suffer because NTs don't realise the effect of their behaviour on them.

I saw an anecdote recently where a young autistic man was being put at risk of burning himself because his efforts not to be burnt were dismissed as "controlling behaviour".

Also the numerous conflations of distress with "challenging behaviour".

When you don't differentiate between different kinds of autism it is like giving the same pair of glasses to every short sighted person

That is ^exactly* the analogy I was just thinking of myself. Or worse - it's like someone with a weak reading prescription demanding the same support, allowances and consideration for their condition as someone who is profoundly blind.

@BlooShampoo - same, I’m so exhausted after work that I can barely drag my carcass off the sofa. I probably act “more autistic” than I am because I’ve been putting on a persona all day that when I get home my “autism” spills out in waves.
I can’t make decisions, I deliberate over the most stupid things for hours so I don’t actually get anything done (currently I’ve been deliberating over the right time to walk for the dog since 8am this morning). The exhausting stress of psyching myself up for social situations only to cancel at the last minute anyway. And the piss taking ... yes I’m going to watch terminator 2 again later, I’ve not seen it this week. DH and I can laugh about it but try telling someone on “the outside” about these things and watch them run for the hills (unless they’re curious enough to stick around and find out what other weird stuff you do)

But to colleagues and clients - there’s absolutely nothing wrong with me, I’m just a bit “quiet”