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?

[Paska]

@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.

Because I need to go to work and do my job, and go to the shop, and do all the things any other adult needs to survive. And because I do occasionally enjoy socialising and human interaction although mostly in certain ciscumstances with people I feel comfortable with.

[AdoptedBumpkin]

I agree, although not autistic as far as I know. Society is making progress with racism and homophobia, and hopefully in the relatively near future global society will be more accepting of autism, and neurodiversity in general.

[MashedPotatoBrainz]

I really don't understand how people can say autism isn't a disability. To be diagnosed as autistic your life has to be significantly impaired by your autistic characteristics. It's written into the diagnostic criteria:

'Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.' (DSM V)

[Lifejacket]

My question wasnt to offend, itwas genuine curiosity.

I'd be heartbroken if he felt that he had to do this to fit in. He is incredibly social, he loves people. Being the other end of the spectrum doesn't mean he doesn't want to be with people or have relationships. I hope he never does. I hope the same for my nt child too. People should like/ love you for who you are. That being said it's likely he won't have a job or responsibility.

Maybe if more adult people with autism were brave enough to show their true selves, younger kids would grow up not being as outcast and acceptance would grow. Easy to say.... my heart breaks that you're doing it to this extent.

@Hangingwithmygnomies I think funding is a problem across the board for children, there just isn't enough. Ehcp's can be given for social reasons. You could fight for it, specialist slt can help with emotional recognition and regulation and ot with sensory needs even if your son is doing ok academically it can still be given (if you haven't already).

[Sherlockfactory]

@Lifejacket you’re question wasn’t offensive at all. I mask because of personal experiences, I wish it wasn’t so. My family and my DH know when I’m not masking as I can’t seem to hide it from them!

I also have to mask at work, going to the shops as a pp explained. My niece is undiagnosed but it runs in my family, she has not learnt to mask yet.

[Hangingwithmygnomies]

@Lifejacket I've been told it's extremely unlikely I'll get an ECHP for him, due to his academic ability and the fact he hides it so well. I'm going to raise it again when he is back to school. My worry first, is actually whether or not I'll be able to get him back to school

[TriciaH]

I am a parent to a child with autism among other conditions. I personally always try to take my time with people with the condition. That will be my son in years to come. A man with autism working in my local tesco gave me some excellent advice regarding my son when out. The next time I was in there and saw him I thanked him for it.

[ShiitakePancake]

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

To be treated like an adult/have a job/do the things I want. Didn't last long though, I masked to get my dream job, burnt myself out and lost the job. Now I can barely mask at all, I'm treated like a small child even by doctors when I stim etc and can't get a job as I just can't hold it together to get through an interview. People seem to forget that autistic children become autistic adults and I've found myself treated pretty badly and condescendingly in my "non masking form"
The workd seems to have very little patience for outside the norm I live in the countryside far from other people now as I'm too exhausted to mask and I've found the reaction to non masking autistic adults to be a fairly depressing experience.

[XDownwiththissortofthingX]

@MashedPotatoBrainz

I think part of the resistance to 'disability' is that disability does, in itself, carry a stigma and lays you open to a whole new layer of discrimination and prejudice.

It's the same for all mental health/learning difficulties I've come into contact with in my professional role. The debate about yes/no to categorising your condition is pretty mush identical across them all. Advocates of 'disability' have concerns about access to services and people not being given the adjustments they are entitled to, whereas people who reject 'disability' often state that it's a discriminatory label that doesn't reflect who they are and just needlessly stigmatises them further.

I encounter it in myself whenever I used to apply for jobs in the past. The eternal dilemma of whether to disclose my legally recognised disability, and be covered by all the associated legal provisions, or whether to not declare it because I didn't want to be either a token interviewee for equalities purposes, or see my application go straight into the bin because I would be deemed not worth the hassle when there are also perfectly capable NT applicants.

I don't think there's a genuinely correct answer to the question. I think it has to be down to the individual or that individual's guardian and carers to decide what's best in each individual circumstance. I certainly wouldn't side with people protesting for the mandatory use of 'disabled' on my behalf, and in fact, I'd find it patronising, insulting, and infuriating. I'm far more inclined towards arguing the other way, but with the caveat that access to services has to be guaranteed in all cases.

[XDownwiththissortofthingX]

FWIW, DSM and ICD are reviewed and updated all the time. I don't think you can take it as read that whatever DSM says is absolute truth. It's just how the current medical model describes and defines a condition. It's been hilariously wrong in the past, and will be again in the future, no doubt

[Hangingwithmygnomies]

@ShiitakePancake

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

To be treated like an adult/have a job/do the things I want. Didn't last long though, I masked to get my dream job, burnt myself out and lost the job. Now I can barely mask at all, I'm treated like a small child even by doctors when I stim etc and can't get a job as I just can't hold it together to get through an interview. People seem to forget that autistic children become autistic adults and I've found myself treated pretty badly and condescendingly in my "non masking form"
The workd seems to have very little patience for outside the norm I live in the countryside far from other people now as I'm too exhausted to mask and I've found the reaction to non masking autistic adults to be a fairly depressing experience.

Right here, you have outlined the concerns I have for my son. I'm frequently told that it's common for children to slip/drop the mask when they hit secondary school. I worry for him if it does. Do you think learning appropriate coping strategies at a younger age would've helped your situation as an adult? Whilst I want to encourage my son to be himself, he will need to learn to cope with stressful situations that are beyond his control.

[Scautish]

I think we are a long way from societal acceptance. You just have to look at the threads on this site alone and to see how insidious the ignorance and prejudice is. I can only comment on my experience as an autistic person without learning difficulties, but the ignorance is astounding.

For example the threads in relationships - the ones offering support for those “married to someone with Asperger’s”. The fact that mumsnet don’t see how even having a thread Titled like this, let alone allowing ableist narrative of the thread itself speaks volumes - we are perceived as nasty controlling gaslighting antisocial abusers who don’t give the NTs the emotional support that every NT apparently needs (their words, not mine)

As many before me in this thread have said : if you mask then You can’t be autistic, or it must be “mild” (fuck that - mild is one of the most unhelpful terms) but if you don’t Mask you’re seen as weird and kept on the outside. The big problem is that so many people cannot empathise AT ALL with how we are made to feel by NT social rules.

Sorry to rant, bad bad bad week and recovering from massive shutdown/meltdown and I’m currently stuck in my head and unable to speak.

[Scautish]

@hangingwithmygnomies

If I have a stressful appointment eg doctor or dentist I print out a note so they understand that I’m on the spectrum, am very stressed but I don’t have learning difficulties and that I don’t mean to be rude as I know I can appear to be that way if I’m stressed.

I’m also open about my diagnosis professionally as much as possible as I feel more comfortable with people knowing. Further, their reaction the that information is a good way of assessing whether they are a twat or not.

[XDownwiththissortofthingX]

@Scautish

YES YES YES!!!!!

I'm saying this largely tongue-in-cheek, but my biggest problem with most NT's is how fucking nauseatingly needy most of them are!

I don't do spirituality at all, don't really believe in emotions, just reactions to stimulus. I don't do sentimentality whatsoever, I don't keep ornamentation in my home, I don't feel any requirement to keep photographs of friends or relatives. I have neices I've never met and have no intention of meeting, other people's children to no interest me in any way because I have absolutely nothing in common with them.

I am one of the 'monsters' described in those vile, hateful, ignorant threads, and the devil in me has forever wanted to start a 'Support thread for Autists in relationships with needy, overly emotional, devoid of logic, hysterical Neurotypicals".

I suspect it would last about two minutes before getting nuked, but to me it's just the simple counterpoint to the persistent 'Support" threads the other way around. I'm no monster. I do compassion, I do love, I do concern, I do empathy. I just don't do romance, and I find the majority of NT people overwhelmingly cloying and dependant. We just see the world in totally different ways, and our ways of interacting with it and what we require from it are polar opposites. We're the 'problem' though.

[vanillandhoney]

To be treated like an adult/have a job/do the things I want. Didn't last long though, I masked to get my dream job, burnt myself out and lost the job.

This, a thousand times this.

Autism/Aspergers runs in my family. My granddad had it, my dad and his sister are both Aspergers, and it's been passed on to me as well.

My life seems to go in cycles. So in primary school I masked and got through it (though there were a lot of meltdowns at home). I struggled a lot in secondary - I was diagnosed with anxiety and depression but nobody picked up on the autism. I barely coped with university and was eventually diagnosed when I was 21. I graduated with poor marks and managed to get a routine job in a supermarket and a relationship. Both fell apart within four years.

I got another job and got promoted twice but burnt myself out and ended up quitting in January of this year. Nobody I worked with had any concept of what life was actually like with autism. I was treated very badly by lots of people and it really knocked my confidence.

I now run my own business working with animals. I mask my way through any interaction with clients but spend 90% of my time on my own with the dogs which seems to be working well. It's not especially high earning but DH supports me and understands my need to escape from it all quite frequently!

[Haenow]

@XDownwiththissortofthingX

FWIW, DSM and ICD are reviewed and updated all the time. I don't think you can take it as read that whatever DSM says is absolute truth. It's just how the current medical model describes and defines a condition. It's been hilariously wrong in the past, and will be again in the future, no doubt

I fully respect an individual’s right to decide on how they identify and that includes whether they perceive themselves to have a disability or impairment or any of choice of word. On the other hand, I think we need to be aware that we don’t sway too far away from the trail of thought that the ICD may be incorrect. Being protected in the eyes of the law is important for many people and a privilege I wouldn’t want to take away from those who choose to utilise it. Hope this makes sense. I am broadly agreeing with you but adding a caveat about self identifying as a person with a disability and how the law protects.

[Haenow]

^^ugh I worded that so badly. I meant to say, while the ICD is not gospel, suggesting it may shift in the future is a possibility but not something to hang your hat on.

[XDownwiththissortofthingX]

Oh absolutely, and that goes hand in hand with what I said about access to services.

[XDownwiththissortofthingX]

I meant that in response to your point about legal protections.

[Lifejacket]

I don't think you should redefine diagnostic criteria in order to fit your own view. This is the reason the dx should be split between hfa and lfa (or other wording). This is also the reason I worry for my son about the aa movement (and other similar ones) as it ignores the needs of the most severe and those that the diagnosis was original devised for. You cannot have an autism dx without having an impairment atthe time of dx, it is clinical dx.

[RaaRaaeee]

I think people should be able to refer to themselves however they want, whether that be ‘autistic’ or ‘person with autism' From what I have read in autism advocacy literature however, it seems most autistic people prefer being called autistic so I will stick with that unless an someone says they prefer something different, which of course I would respect.
But I do think terms like ‘low functioning’ and ‘severe’ are much more problematic labels to put on a child. Why not ‘high support needs’ surely that is just as accurate and gets the point across?
Personally, I also really value the ‘actually autistic’ movement and other autism advocacy as it makes me feel hopeful -I want to listen to what they have to say- that will be my son someday. I don’t think it threatens my voice as a parent - I mean come on, society has no trouble at all putting a negative spin on autism and silencing autistic people and this needs to be challenged!
I need my son to be resilient and I think that starts with having a positive attitude about who he is, as with any child with their whole life ahead of them!

[ArriettyJones]

as it ignores the needs of the most severe and those that the diagnosis was original devised for.

In medicine, I don’t think they think of diagnoses as being “devised”, but rather of conditions being discovered. It’s quite usual for more obvious presentations of a condition to be the ones initially identified and codified in diagnostic criteria. Later the more subtle presentations are recognised.

It’s quite strange of you to think Kanner autists somehow get first dibs on the diagnosis of “autism” in general, or that people who have Aspergers or HF dxs are somehow interlopers, which seemed to be what you were implying.

[Onceuponatimethen]

Isn’t the issue that the autism dx isn’t isolating a particular genetic or physiological process, so it is an umbrella for perceived difference and/or disability?

You have epilepsy if your brain has eyes electrical activity that can be seen on EEG

With autism it’s about how far you different from norms decided by the NT population.

And some potentially very different types of experience have all been grouped together in that dx, which may or may not be helpful.