To think autistic people arent liserned to

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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?

So very very keen to listen

Thank you for the advice, I will certainly give it a try. Can I ask, did you find it hard to get across when you found things difficult as a child? We often get "I don't know" when asking him what's bothering him and he'll either meltdown or shutdown and refuse to talk to us about it. He struggles hugely with emotions and this year there have been plenty of strong emotions, with lockdown and the loss of my Grandad (who he refuses to talk about).

@WaterWisp I understand what you mean and agree not all parents will try to understand their child with autism. I also agree that people with autism may understand also if they want to. I guess that is all human nature. I think some nt parents with traits but not autism may understand best of all and also some nt people with traits or sensory difficulties will also be able to sympathise. At this moment in time I gave no doubt that I understand my son best but think this will change when his brother gets older.

This is a genuine question and I thought about sending you a pm, there is no malice intended. When you refer to nt and people with autism do you see them as two distinct groups/ races? I think this maybe where we're disagreeing as I see autism as a disability of humans rather than a different type of human. My son has a disability. I can see why this doesn't hold true for those with hfa as the social model works better in those circs. I would welcome a proper conversation around this. I don't want to argue or point prove though.

As a general observation if it is agreed that for someone to get a dx they have to fit the diagnostic criteria and have an impairment or require support and that there is a spectrum why is it then that people who are more sever are assumed to have comorbid conditions? It's almost like some dont want the lower end of the spectrum to be defined by the same diagnosis yet don't want different diagnosis. I accept that there may be co existing conditions but I don't think it's right to say that anyone who is severely impaired must therefore have a learning disability rather than be more impaired by autism. Aspergers was brought into the autism diagnosis, that original group of people still exist.

My referral to hfa isn't ment to offend it's just to distinguish the difference if that makes sense. I could have put mild or less impaired. There are so many terms, hfa and lfa are the ones we use.

@LavenderLotus

You've got to remember that a lot of the difference between them is how easily they can pretend to be NT. Just because someone is articulate and can behave like an NT socially, doesn't mean they don't have meltdowns once they get home, or that they don't have sensory issues that they've found ways to hide

This describes me to a tee.

I'll turn up at a social event, immaculately turned out, big cheery smile, life and soul of the party, so I 'can't be autistic'. What people don't see is that an hour earlier I was having a cataclysmic meltdown, because getting ready to leave the house is a two hour long ordeal, a series of difficult actions that trip me into overload if any of them go wrong in any way. I've trashed rooms, destroyed objects, and so on, then thirty minutes later stood in front of 20 people and facilitated a training session.

I totally accept the other posters points that perhaps I can't relate to a non-verbal child because I was never non-verbal as a child for example, but as adult I shut down and become non-verbal when I'm extremely stressed or angry, and I do have the odd period where for days on end all my autistic traits become more pronounced, and as a result I become significantly less able to function. This is a thing that is never really acknowledged either, that autism itself isn't a constant. The consequences of my autism can, at times, be easier or far more difficult to mask and cope with depending on other factors in my life. My health, stressors like work and relationships, significant upheavals, all of these can contribute to what I can only describe as an autistic 'flare up', and it's at those times even NT people who are usually totally oblivious would recognise that I'm quite clearly someone with autism.

I agree so much I'm doing a PhD on it!

I pass for NT when out because I watched people and have a record of their behaviour playing in my head. I copy what that 'video' but when the video runs out then I'm completely lost and fuck it up.

@Lifejacket

I see autism as essentially a difference that is often very disabling. I also think that society perpetuates the disabling nature of the condition though forcing an individual and their family to try and change to fit in or be marginalised. I don’t really understand why you seem so against the social model of disability? Surely you would prefer society accepts and values your son and tries to accommodate for his differences? It might not magic away all his difficulties but it would surely make his life more pleasant and your life easier if you didn’t have to fight to get him the help he needs?

@WaterWisp thank you for the reply. I agree nobody is superior, I don't agree/ follow the neurotribes view. Just to clarify I don't believe in eugenics (incase it came over that way), I fight for my son to have access to everything he wants/ needs that he should have access to.

This thread is incredibly interesting to me just maybe not in the way some posters are intending. It is really good to get insight into what it is like for someone with hfa.

@LauraMipsum’s post about “Schroedinger’s Autist” is really excellent.

We’re not listened to at all. My personal experience is also that autistic people are mistreated on a systemic level. My experience of being autistic is that no matter how hard you try and no matter what you do, no matter how much you bend over backwards for everyone, a lot of people will hate you. And then you will be gaslit by people telling you that this is not the case. And to top it all off, despite their utter ignorance of the subject, they will tell you that you don’t really have the right to talk authoritatively about autism, that you have “mild autism” or “high-functioning autism”. No one gives a single shit that you’re exhausted from putting in ten times as much effort as most people to do things.

Ableism is so, so rampant yet is overlooked, dismissed and minimalised. In my experience the world is a hostile environment.

I hope I haven’t offended anyone with this long-winded moan, it just upsets me.

[quote anotheronebitesthecrust]@LauraMipsum’s post about “Schroedinger’s Autist” is really excellent.

We’re not listened to at all. My personal experience is also that autistic people are mistreated on a systemic level. My experience of being autistic is that no matter how hard you try and no matter what you do, no matter how much you bend over backwards for everyone, a lot of people will hate you. And then you will be gaslit by people telling you that this is not the case. And to top it all off, despite their utter ignorance of the subject, they will tell you that you don’t really have the right to talk authoritatively about autism, that you have “mild autism” or “high-functioning autism”. No one gives a single shit that you’re exhausted from putting in ten times as much effort as most people to do things.

Ableism is so, so rampant yet is overlooked, dismissed and minimalised. In my experience the world is a hostile environment.

I hope I haven’t offended anyone with this long-winded moan, it just upsets me.[/quote]
Very well said. 👏🏼 Excellent post.

I can pass for NT but it’s a big process and what is termed as ‘masking’. It takes away a lot. When I get home I have a meltdown and then do my routine and then I want to sleep! I went to coffee shops and listened to conversations people had so I know how to speak to people and carry a conversation. I can do this well now but it didn’t happen overnight.

I was non verbal as a child had to have intensive speech therapy got diagnosed as an adult though. Teachers at school used to say to me ‘why aren’t you social? Why don’t you speak up? What the hell is wrong with you?’ Not all teachers are like this though. I used to see my sister easily make friends, and I used to wonder what the formula was to that. I still don’t have any close friends, but that’s ok.

@RaaRaaeee yes it would 100% but in reality I don't think it'll ever happen. People are just too selfish.

I'm not against the social model at all.

I am aware of the growing trend of groups such as actually autistic (an example). Where parents like me aren't viewed very kindly, which worries me as groups like this for the reasons I've given previously wouldn't be able to advocate for my son, in addition he would be defined as having learning disability which he doesn't.

I feel conversely about how autism is portrayed. The recent inclusion of hfa in the dx and focus of diversity in media is mainly showing the higher functioning side. I cant think of a tv show where a character not even a main character is severely affected but can think of many to the reverse. I'd love my son to see someone on tv like him, flapping, vocalising, stimming, echolalic maybe. Not the good doctor or the a word (the a word being the most severe character I can think of) def not the sesame character.

I find society expects him to conform and he doesn't and we don't force him so if I say to someone who doesn't know that he has autism it isn't what they expect.

I do worry that the trend for people with autism to be listened to over parents and carers will leave the most in need of support left behind, those unable to voice their needs.

My son does need alot of support (life long, no super powers) so I do see his autism as a big disability, I would take it for him if i could.

I'm happy to engage in conversation around this with anyone but I dont want get into an argument about it which sometimes these types of conversations can turn into. That's a general comment for everyone and I do think these conversations are valuable.

At those they say they mask or get exhausted by trying to fit in, why do you do it? I'm wondering if my son hasn't developed in those areas as we've never pushed that with him.

I really liked "The good doctor", even if it still romanticised autism and glossed over many difficulties that the character should have had given his other traits. I cried when he had the big meltdowns.

Definitely much better than Sheldon Cooper for example.

It sparked some very interesting discussions about disabilities and SEN with my daughter.

@WaterWisp as a book, I think the history of autism is well recorded. I dont have such a sympathetic view of Aspergers, also detest the term refrigerator mothers. I see autism, my sons autism as a disability nota difference. I do wish I could take it from him and if I could I would, I wouldn't be without him in the world tho or remove autism from the world for those who arent as disabled. I want my son to have a better, easier, fuller life. He needs and deserves more than being just accommodated. Which was my take on the book, accommodation and acceptance. Yes I want those things now as that at the moment is best case but if I could give him a magic tablet and make him less disabled i would. I guess that's my general neurotribe view too. For him it's a disability not a difference.

@Lifejacket if you’re not diagnosed in early childhood it’s very "sink or swim". Masking is for survival. No one made a single allowance or accommodation for me as a child, and I wouldn’t wish that level of difficulty on anyone. There’s an unfortunate "uncanny valley" sort of thing going on for a lot of autistic people who mask, where, to people who don’t know a lot about autism (i.e. the vast majority) we don’t quite seem "autistic enough" to be deemed worthy of any adjustment/affirmative action etc, but we seem "off" enough that people see fit to treat us really cruelly. There’s an incredible amount of suffering involved with masking which isn't necessarily compensated for by the occasional advantages it can provide.

(Only speaking from personal experience with some input from other autistic people/people with autism I've spoken to)

@Lifejacket

At those they say they mask or get exhausted by trying to fit in, why do you do it? I'm wondering if my son hasn't developed in those areas as we've never pushed that with him.

We've never pushed our son to mask, it is something he has done since he was small. It's a copying behaviour, something he has done from the age of 2.5 when he started talking in comprehensive sentences. He absolutely hates to be different in anyway, so does whatever he can to fit in. It makes me sad he feels he can't be himself. I feel the same as you with regards to it being a disability (even though he is hfa) it disables him from being able to do everyday things that most people take for granted. I think that both adults with autism and parents of children with autism should be listened to, as each view point is valid. I too would also take it from him if I could, to take away the anxiety that overwhelms him, the self depreciating when he doesn't get an answer right the first time. He does not get the help and support he needs, as ironically he is not autistic enough.

@WaterWisp thank you, I didn't realise it had a name to it.

At those they say they mask or get exhausted by trying to fit in, why do you do it?

Because contrary to what people think, we don't want to be alone. Just like everyone else we want to make friends and connections and feel like a valued part of society. My autistic DD's headteacher told me that she only has problems with other children because she keeps trying to join in and play with. If she left them alone there wouldn't be an issue.