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.

blooshampoo It is my autistic friend who says that autism is simply a different way of thinking. I know autistic people view their autism in a variety of ways. And I can accept her way of viewing it for herself, but not for someone who is non verbal and unable to do basic self care tasks.

So any difficulty that someone has which isn’t immediately obvious to the casual observer is.... non-existent? Exaggerated?
If you want to use the blindness analogy... some people use a guide dog. Others use a white stick. One might be more obvious to you than another, but that doesn’t mean the person who uses the other aid is just a tad short-sighted

It does sound like the classification system we have for autism could do with a bit of a shake up.

Lellow honestly I relate so much
@clairemcnam the thing is it’s pretty nuanced. Some non-verbal people can do a lot of basic tasks. Some verbal people can’t. For a lot of people, their “functioning level” changes in either direction as they get older

@clairemcnam The trouble there is that some people who are non-verbal and unable to do basic self care tasks are holding down jobs, living autonomously, etc.

The spectrum is so wide that spectrum is probably the wrong word to use!

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.

Yes, thank you. That makes perfect sense.

I don't really have much to add. I don't have autism and my only encounter with it is teaching the odd undergraduate who has it.

I am absolutely appalled by the slurs against autism on this site though...particularly the so called support group for people leaving autistic partners.

I think what upsets me most is that people cannot see the huge privilege that being NT brings...and that they further feel that being NT means they have an automatic right for their lives not to be interfered with in any way by disability.

Like its not enough for us to have the benefits of NT, we have to suffer no consequence of the existence of disability WHATSOEVER.

The classic example is people complaining that someone's disability has impinged on their cinema experience. The entitlement of believing that paying money for a ticket implies the right to view the film with no interference from disability. The fact that people WITH disabilities can also purchase tickets, and unlike for us, every single one of their cinema experiences will be impacted, simply doesn't register.

Like they think everyone has a right to a life free from disability...except people who have disabilities...who obviously have very very few rights at all....

I can't describe how much it pisses me off.

@clairemcnam The trouble there is that some people who are non-verbal and unable to do basic self care tasks are holding down jobs, living autonomously, etc.

This must be pretty rare surely? And they must have a carer. I was not talking about struggles to do basic self care. I mean those whose functioning means they have no idea how to wash themselves, get dressed, prepare a meal, etc.

And sure there are people with autism who are verbal who will not be able to do those.

Yeah - people can fuck off with 'a bit autistic'. Mind you they can fuck off with 'a bit OCD' and 'a bit depressed' too.

They are all spectra and the majority of people are not on those spectra AT ALL.

@clairemcnam it’s also worth noting that a lot of us technically can do those things, but it takes us a long time and causes us a lot of exhaustion.

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.

It's comments like this which are part of the problem, autism is a disability whether a person is verbal or not, whether they have a job or not. You have no right to decide a person isn't disabled or to minimise a person's problems/struggles. It's really fucking dismissive for you to say "of course her autism affects her." Well duh, if a person didn't have any difficulties they wouldn't get a diagnosis. Its really weird that if an autistic person has a job people are like "oh, they aren't disabled then."

Its spectacularly unhelpful that people keep perpetuating the stereotype of the spectrum as being only "severely autistic non-verbal people at one end and high functioning autistic adults who all have jobs and can live independently at the other end."

I don't know why it's so hard for people to grasp that a person can be verbal and still struggle with basic self care tasks and never be able to live independently. Then again I don't understand why NTs who clearly understand nothing about autism are so keen to deny anyone other than autistic people who fit their narrow view of disabled help or support.
An autistic adult who is verbal but can't go out alone, manage day to day life, let alone get a job is "obviously disabled" too.

Hi BlankTimes, thanks for popping up with that ever useful link. I fear a few people on here won't bother to even look at it though. The person who made the "the spectrum is too wide" comment could do with taking a look at it.

@JanMeyer Thanks, but I've seen it a billion times before - I'm both autistic and trained as a physicist. It doesn't change my opinion!

JanMeyer I am surrounded by autistic people who get very angry if you say it is a disability. I secretly think it is. But I get told all the ti,e in relation to autism the "correct" way to view it and things to say, and it is very different from what people here are saying.
And yes I do understand that for everyone it has an impact.

I used to work with severely autistic teenagers, and those teenagers were extremely unlikely to ever live independently. They were unable to do self-care tasks that a NT toddler could do. Most were still being spoon fed. That is what I was talking about when I was talking about self-care.

I am disabled myself so have tiredness around doing self-care. But that is different from simply not being able to do it at all ever.

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.

I think we will need to rethink even the idea of a binary spectrum in times to come as I think there are many many people like me who for many reasons won't seek or be given a diagnosis but will identify with many aspects of autism, especially the difficulties posed.

Unless you are someone with Autism, or like me live with someone with Autism. In my case Dd 22. Ppl should never make these statements or judgments. Yes since Dd has been a child life has been a rollercoaster especially with school. But I have three children, she is the youngest. And I'm closer to her than I am the others. She now has a child of her own and they both live with me. I totally understand why you feel the way you do OP. And agree. There is also such a massive sliding scale for Autism. Each person is different. Like every human being. You just can't make these generalisations about ppl. My Dd is so caring, always considers me, always includes me, and vice versa.

I think we will need to rethink even the idea of a binary spectrum in times to come as I think there are many many people like me who for many reasons won't seek or be given a diagnosis but will identify with many aspects of autism, especially the difficulties posed.

I totally disagree. There are only two reasons you will not be given diagnosis.

1. A qualified professional has assessed you and concluded you are not autistic.

1. An inadequate professional has assessed you and, despite you meeting the autistic criteria, they make a mistake in saying you are not autistic.

We do not need to rethink guidelines just so people who have decided they are “a bit autistic” can get a diagnosis.

@barbie222 Whether you have a diagnosis or not doesn't affect whether you have autism or not - in the same way that someone who has undiagnosed anemia is still anemic even if they think they're just a bit tired.

And someone who has some of the difficulties that autistic people have but not enough for the diagnosis still has difficulties, they just don't have the specific set of difficulties we call autism.

I don't think it's so much ' a bit autistic' or your either autistic or your not. It depends what aspects of autism you have. Some ppl with autism have certain strengths and weaknesses. I. E my Dd has and always has had from a child great eye contact and language skills. Which help he scrape through. Where as some ppl with autism find both these aspects difficult. Like I said in previous post there's a sliding scale depending on that particular individual.

Obsessing over minute details of my current fixation (Doberman dogs, no I don’t even have one)
Love it!
flapping my hands in Asda as I’m so fucking stressed by my senses that I’m close to doing a runner.
Me too! I rarely do supermarkets because I spend the whole time flapping, even when the place is practically empty. I think it's the lights.

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 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’m always a bit depressed by these threads.

It is my autistic friend who says that autism is simply a different way of thinking.
Bear in mind that they might be 'simplifying' it for you and their real thinking may be far too complicated for them to put into words. I'd probably describe it as a different way of thinking or a different operating system for some people but the reality is a whole lot more complicated. I don't see my autism as a disability as such (maybe because I'm so used to being told 'you can't you're autistic' that I'd not dare) but there are aspects of it that are disabling, either all the time or in certain circumstances. Other people are different depending on how it affects them.

I’m always a bit depressed by these threads.
Only a 'bit'?!

Trust me it is not about simplifying it. It is about arguing with anyone who says it is a disability.

@clairemcnam Sounds more like social vs medical model to me.

Deafness and blindness aren't disabilities either.