To think autistic people arent liserned to

[blueapple123]

I would love to hear autistic peoples point of view on this. I feel that in conversations about autism autistic peoples voices are completely ignored. Autistic adults seem to be on the receiving end of nasty comments, often from some parents of children with autism and are ridiculed for giving their opinion on things.Surly things like weather you use person first language etc aren't up to neurotipical people?

But I got absolutely bolloxed here not long ago for referring to someone (or myself, or someone and myself???) as “aspie”. Which is my preferred term (and I’m damned if I can see what’s offensive about it).

I think that might have been me. If it was the post I am thinking about it was the assumption that the OP was happy to use the term 'Aspie' that wound me up as you (if it is the one I'm thinking of) referred to the OP as Aspie before she did herself. There was absolutely no need for me to do that though. I'm a bit of a dick sometimes and I can only apologise.

I think you are right. I am sorry to hear your experiences. I find people are like that to my son but i sort of hoped it was because he was a child. Its horrid to hear it doesnt get better.

In defence of parents ( i am one) i find my NT child just as hard and talk about the difficulties i face in being his parent just as much.

I either get treated like a two-year-old, or told I'm just making excuses. So I no longer tell people.

Well I see a lot of people with autism getting upset with the term aspergers. Or high functioning autism.
But in reality there does need to be a distinction, much like there is in almost every nuance of human life. Even NT people don’t particularly think of themselves as NT.
and there are so many attachments styles, personality disorders - the list goes on.

Sometimes it does feel a bit then and is. And that comes from both sides of the coins.

That’s very sweet of you @ohoneohtwo

Maybe it was a bit presumptuous of me. It just sounds such a nice word to me, i didn’t really have any awareness that some don’t like it.

And when I say them and us from my autistic ( aspergers) brothers point, no NT people understand me, and they’re all dicks, so I’ll stick to labelling them all. I’m in my bubble with my gang. And that’s that.

And from a personal point of view, I feel I try a thousand times harder to accommodate his natural needs than I think he does to accommodate my natural needs. But perhaps he’s just a dick head.

But in reality there does need to be a distinction,

There is.Spectrum.

Y y I agree - see this all the time with my dd

I subscribe absolutely to the neurodiversity angle - why aren’t viewpoints of people with ASC equally valid?

On a more personal basis I am desperate to hear views from adults with ASC. My dd doesn’t have a dx. I am thinking it may be time to go for it.

But part of me thinks why should she be told she has a ‘condition‘ when how she is as a person is totally valid. Just because random singing and reduced eye contact aren’t the norm!

I'm autistic and I'm a total jinx when it comes to seeking help. I can't even get medical help for ds and my dh has to take him to the doctors if he ever needs anything. Nobody ever listens to me and it's so demoralising and depressing. I feel as though I have no voice. I can't apply for PIP or anything. I've had to pack my job in due to a mental health crisis over the winter period and can't seek help. It's like I don't exist.

@PrincessConsueIaBananaHammock
Well of course there is a spectrum.
But A: I think that term is bandied about like mad.
B: how do people identity themselves on that spectrum?

But part of me thinks why should she be told she has a ‘condition‘ when how she is as a person is totally valid. Just because random singing and reduced eye contact aren’t the norm!

Is she old enough to understand the “social model” of disability? (That being a certain way is only societally labelled a ‘disability’ because society is organised for the majority. That disabled is just another word for different.) Actually thinking about it by eldest was diagnosed at 7, my middle one at 17 and my youngest at 6 and that’s roughly the line I took with all of them, just adjusted for age. It’s great to be unusual, and also has the odd downside.

I didn’t get my dx until I was an adult and I have to say, it would have been much better to have had the explanation much sooner, even though I’ve always been able to “pass for normal” a lot of the time. It was a huge inner stress. Understanding why some things are a struggle to conform to, and the reason for all the quirks, was a massive help, psychologically.

@arraysstartatzero @rosiethehen

Hi OP I think I kind of get your thinking...
Here's my perspective, as parent to a severely autistic (amongst umpteen other diagnoses) I've kind of adopted the armour every special needs parent learns quickly they need to.

You spend every waking hour battling for services, support and specialists fir your D.C. You're form provided shallow promises of help or contacts that just never materialise.

You spend years explaining conditions and their traits to family members who feel no shame publicly telling you your child need a firm hand , you're disrespected in your own home and your clear wishes are ignored because despite you facing extreme violence on a dsily basis they think they know better.
Then there's this called specialists and experts.....
Yes those folks who who naively think will support you once your battle for a diagnosis happens.
All along you've probably had to drop your career as you're the only one who is able to manage your child -you could no longer keep relying on the "understanding" of your boss when the school call collect three times a week before 10.30am

You cocoon yourself inside your own safe bubble-the school gates grant you a sympathetic head tilt from mums who glare at your child as you stare furwards past them and their perfect children & the senco looks at the floor as she know she's not replied to any of your emails.

Your whole life feels as if you are speaking Japaneswhich is baffling spend every day repeating yourself .

Autism is poorly understood, grossly underfunded and avoided by society. I don't believe any of our voices count but work tirelessly in the hope this nsy one day change

Even NT people don’t particularly think of themselves as NT.

YES and I think this is EXACTLY the problem. NT people recognise in other NT people that they are not the Borg, there are NTs with learning disabilities and others who are academically gifted, there are some who love words and some who love numbers, some who are clumsy and some who are graceful, some who are articulate and some who stammer, but nobody ever says "oh well X can't be that neurotypical because she keeps dropping plates," or says "my 4 year old nephew is NT and he's nothing like you, so are you sure you're NT?" because those would sound ridiculous.

Yet "X can't be that autistic because he makes eye contact" or "my 4yo nephew is autistic and he's nothing like you, so are you sure you're autistic?" are things that autistic adults often hear.

• But A: I think that term is bandied about like mad. B: how do people identity themselves on that spectrum?*

A. You might think that ,but that's what it is. And it is called that because while there might be some common traits for some autistic people, no two people will be the same. That's without adding that it presents differently in girls than in boys, the mix and match of the triad of impairments, or the complete opposite traits some people might display. A lot of people also look at it as a straight line with "low" functioning at one end and "high" functioning at the other, when it's more like a Venn Diagram. At least in my opinion.

B. I can't answer that. Have you asked them?

But part of me thinks why should she be told she has a ‘condition‘ when how she is as a person is totally valid. Just because random singing and reduced eye contact aren’t the norm!

They are in my household onceuponatimethen!

I can tell you as someone who was diagnosed as an adult, with a child diagnosed at pre-school age, that my daughter's life will be easier for the 'label' autism than mine was with the labels of difficult, rude, arrogant, challenging, daydreaming, disconnected, capable but lazy, insolent, oversensitive etc.

If I had diagnosis I feel I would be taken more seriously. I'm sick of being so misunderstood and trod on. I have a form of dyslexia too and have had to explain to people that although I'm bright, I take more time than NT people to process new information, surroundings, etc. I get easily agitated in large crowds and am sensitive to textures. When someone asks me a question I often misinterpret it and end up looking like a prat.

Nobody ever listens to me and it's so demoralising and depressing. I feel as though I have no voice
Snap, I have been in quite bad pain for nearly a year now as I'm treated like a two year old at the doctors, I've given up on trying to talk to anyone in real life tbh.
It's quite visible something is "wrong" with me, ticks, flapping, can't do eye contact etc and people either talk about me to someone else basically pretending I'm not there or down to me like I'm a toddler.

Depressing

I completely and wholeheartedly agree. It's depressing. The autistic community has a very distinct voice and opinions about things but society is not always willing to listen.

For example, the vast majority of autistic people I have encountered in autistic advocacy groups are against the use of ABA therapy and deem it as abusive.

The majority prefer to be called autistic rather than 'person with' because they feel autism is a defining feature of their personality and they are not ashamed of it.

They don't like functioning labels because they make such broad assumptions about people abilities which don't necessarily help. For example, people are categorised as either 'high functioning' and therefore are expected to just get on with things with little support or accommodation, which often leads to high anxiety and depression or 'low functioning' which makes people expect very little of them and completely disregard their abilities and potential. I am in a Facebook group for AAC users- it comes up time and again that they feel they are treated as stupid because they are non-verbal, and that society would prefer to either force them to speak or for them to remain silent rather than accommodate their use of a computer to communicate.

Autistic people tend to subscribe to the social model of disability - that rather than trying to make the individual to 'fit in', society should be more willing to accommodate difference.

They don't want an 'awareness month' each year, people are already 'aware' of autism. What they want is more acceptance and more understanding.

Autism is a life long condition, it is a defining feature of someone's being. Being a parent to an autistic child is hard, but acting like autism is a tragedy and a burden, does not help your child. Listening to autistic people and trying to advocate more for acceptance in society might.

For example, the vast majority of autistic people I have encountered in autistic advocacy groups are against the use of ABA therapy and deem it as abusive.

I watched a video of it being delivered and it almost triggered a panic attack just watching it. To me, an autistic adult, it looked like torture. Torment the child so badly that they behave as you want to make it stop. No different to me than that electric shock therapy that some awful places use.

I know people say diagnosis isn’t potentially a good idea.
But currently the population of the U.K. stands at 1.1%
Personally I think it’s much higher, and only in numbers will it be considered to have a much more important voice. Rather than an odd anomaly
Strength in numbers etc.

@Onceuponatimethen my niece got her autism diagnosis when she was 16 and was really relieved about it. She was happier to be seen as autistic rather than just plain antisocial or anything else with negative connotations.

@PickAChew thank you - really interesting

@LauraMipsum

Even NT people don’t particularly think of themselves as NT.

YES and I think this is EXACTLY the problem. NT people recognise in other NT people that they are not the Borg, there are NTs with learning disabilities and others who are academically gifted, there are some who love words and some who love numbers, some who are clumsy and some who are graceful, some who are articulate and some who stammer, but nobody ever says "oh well X can't be that neurotypical because she keeps dropping plates," or says "my 4 year old nephew is NT and he's nothing like you, so are you sure you're NT?" because those would sound ridiculous.

Yet "X can't be that autistic because he makes eye contact" or "my 4yo nephew is autistic and he's nothing like you, so are you sure you're autistic?" are things that autistic adults often hear.

So true. Well said.

I also think there's a double standard used against autistic adults by NT parents of autistic children.

On the one hand we're not disabled enough to have an opinion - often measured in terms of speech and continence. Now nobody gets to know how continent I am thank you very much, and I type (carefully set out, deleted, edited) with far more social grace than I speak. I have great language skills on a good day, but when I shut down I can no more force words out of my face than I could force bubbles out of my navel. I'd love to. I just can't. Obviously as an adult who has been managing this my whole life I am able to discreetly (or not!) leave situations where a child wouldn't have that option, so mostly, NT colleagues and acquaintances have never seen me meltdown / shut down and I sincerely hope I can mostly keep it that way.

On the other hand, we're too disabled to have an opinion. The only reason we don't like ABA therapy is we are just too incapable to understand what is in our best interests. We just don't understand why it's important to fit in with NT expectations. If we disclose that we did as children, or still do, find speech or continence challenging, then we're treated as incapable of giving any useful contribution about autism at all. When we try to offer commonality we're told we can't do that as we lack empathy, and when we try to offer hard facts we're told we're too stark.

We're Schroedinger's Autist. I'm not sure if we're dead or alive but we're definitely here and probably in your local autism awareness group.