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To think autistic people arent liserned to

(196 Posts)
blueapple123 Thu 18-Jun-20 15:44:35

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?

OP’s posts: |
blueapple123 Thu 18-Jun-20 15:45:14

sorry for the spelling mistake in the title!

OP’s posts: |
calpolatdawn Thu 18-Jun-20 15:47:38

Absolutely agree, really sidelined in society.

GinDrinker00 Thu 18-Jun-20 15:48:24

YANBU. You’ve been on the autism Facebook groups haven’t you?

ThunderRocket Thu 18-Jun-20 15:52:39

Agreed, often they talk about us but aren't willing to listen to our voices, even though we are often experts on our own condition because we've lived it.

PinkyU Thu 18-Jun-20 15:53:55

I think on the whole, yes autistic people do tend not to be heard when it comes to certain subjects.

I do understand the difficultly when it comes to nuanced language because in general there will always be differing opinions within the community itself (ie autistic person vs person with autism), which then causes confusion for those outwith the community (parents, friends, families, allies etc).

MattBerrysHair Thu 18-Jun-20 16:04:54

Totally agree. I have autism but 'pass' for neurotypical easily. On the odd occasion when I've told someone I can almost see their perception of me change in that instant. They go from treating me as an equal to talking down to me, not really listening to what I have to say or no longer seeking me out for school gate chats. Obviously not everyone has reacted that way, but it is more common than I had anticipated.

After being on a waiting list for 2 years Ds1 received a diagnosis in year 7. His primary school just did not value my opinion and concerns about his difficulties at all, despite the fact I know him better than anyone and have first hand experience of the condition. I don't know for sure if my concerns would have been regarded as being more valid if I had kept my diagnosis to myself, but I suspect so.

elliejjtiny Thu 18-Jun-20 16:20:12

Yanbu. However I have also noticed that on threads about autism it often ends in an argument between adults who have autism and parents of children with autism. I love my dh and my dc but sometimes it's hard and we get very little help. I do find some (and by no means all) people who have autism get offended when parents of children who have autism say that their lives are hard. We've had to replace a bed, a tv and a dining chair this lockdown due to breakages caused during meltdowns and stimming. We were lucky with the tv that my son is so unco-ordinated as he was throwing something at my head at the time but he missed and hit the tv instead.

MajorMojo Thu 18-Jun-20 16:28:52

What a refreshing thread. I'm undiagnosed, though I have a condition which frequently co-exists with Aspergers. I've been told that I can't have it (ASD) because I'm female!

Nottherealslimshady Thu 18-Jun-20 16:33:41

I agree, many neurotypicals believe their way is the right way and any other way is the wrong way rather than a different way.
Its infuriating and it takes a while to become self-aware and start forcing yourself to stand up for yourself.
We are rarely taken into account in any part our community though, the way shops are designed your whole social expectations of people, all geared towards neurotypicals it's hard and causes serious mental health issues.

Flyingagainstreason Thu 18-Jun-20 16:35:23

I don’t really agree at all.
But then I struggled with the last part of your paragraph and can’t really understand it.

I think there’s huge amount of support on here and it is often talked about. How are autistic people being sidelined on mumsnet?

Lima45 Thu 18-Jun-20 16:37:15

I don't have autism. But DP does and I'm fairly certain the DD is somewhere on the spectrum however school are keeping an eye on her but she's undiagnosed.

DP has had many frustrated conversations with people where he explains his condition and how he really needs people to talk straight to him. They always agree to state what they mean.

I've lost count of the times when there have been misunderstandings because he's misread a social cue and instead of telling him how they feel someone reacts badly because "well it's obvious I didn't want to do that/ wasn't happy with the outcome/ didn't mean it when I said I was ok"

Just because it would be obvious to someone who is NT doesn't mean it's obvious to someone with autism.

Am also fed up of the number of times I've been told he should have outgrown his awkwardness in social situations.

I think some people link autism to childhood and assume that you outgrow it 🤷

Boulshired Thu 18-Jun-20 16:38:47

I found it much easier regarding autism when Asperger was still used. My DS is diagnosed with Autism but I generally never use it and stick to learning difficulties as my son has little in common except a few traits with those with no learning difficulties. I know about his autism and his autism alone. Whilst autism awareness it still needs to go further on the individual rather than the group.

ThunderRocket Thu 18-Jun-20 16:52:56

@elliejjtiny it's true that they often end in arguments.

I think for autistic people, we don't mind neurotypical people acknowledging that they find us harder, but I will admit to getting fed up of neurotypical people making huge (usually negative) generalisations about us, or 'diagnosing' anyone that they dislike in their life (i.e: someone who shows no autistic traits, but is abusive or narcissistic, but they claim that it's 'autism') as autistic.

For example, I recently saw a thread where a woman was asking for relationship advice in terms of having a relationship with a man with autism. A couple of neurotypical posters then came and based on their, sadly negative, experiences with one autistic man a piece, told the OP not to date any autistic person ever, going so far as to call autistic people 'monsters'.

Several autistic people responded to this unfair generalisation, and were basically told to be quiet. It was quite depressing.

june2007 Thu 18-Jun-20 16:59:34

I think good practice is ovbviously to use person first but then I have worked with and know people with Autism who seem happy to say Autistic and I am happy to say dyslexic. It,s what I am used to and just easier. But I won,t tell others what is right or wrong.

Sherlockfactory Thu 18-Jun-20 17:37:57

It’s actually quite depressing when people make assumptions about me. For example ‘oh she will act like that’ or ‘she is like that because of her ‘autism’’ without getting to know me first. All they see is the autism once you tell people you are autistic.

It’s frustrating but I’ve learnt through the years to stay away from those people.

ThunderRocket Thu 18-Jun-20 18:09:23

@Sherlockfactory I totally agree.

I pass quite well for neurotypical, but the moment I tell people about my autism they suddenly talk to me in the tones you'd talk to a baby, forget that I am competent at things, and seem to see me as if I'm a totally different and less capable person.

That, and talking about me to other people rather than talking to me. It does get tiring.

Sherlockfactory Thu 18-Jun-20 18:50:35

@ThunderRocket - Yes it gets very tiring. I have also found that when people do this, they do not think this is wrong. Even when you explain it to them how it is offensive, they still do not think they have done anything wrong.

I fell out with a couple of family members (my husbands family) due to this last year. The comments that they have said about me is so hurtful, and after the third comment I decided enough was enough.

We are human too, we don’t deserve to be put down or assumptions to be made about us.

ThunderRocket Thu 18-Jun-20 18:53:04

@Sherlockfactory it is frustrating. Sometimes they're polite enough to awkwardly acknowledge that it was wrong, but then revert straight back to the same behaviour next time you see them, and expect you to be okay with it

WaterWisp Thu 18-Jun-20 18:56:44

I get fed up of people complaining about how much work we are, when often we're working equally hard if not harder to accomodate them.

I also get fed up when they confuse needs with wants. For example, I need my ear defenders in loud environments, otherwise I will have a meltdown, next there's nothing I can do other than putting my ear defenders on to stop sounds that seem a little loud to other people from being totally deafening and overwhelming for me.

So many people when I'm just out and about are like "it's ride to wear your earphones here" ('here' being a supermarket, or at uni, or anywhere else capable of getting noisy) and they don't understand that I can't help it.

ohoneohtwo Thu 18-Jun-20 18:57:54

Mid conversation when autism gets a mention....

'Oh, I totally understand that, I'm autistic myself'

'Are you? I never would have guessed. You much just be on the spectrum and no more' angry

PrincessConsueIaBananaHammock Thu 18-Jun-20 19:09:16

YANBU and I think there are several issues as to why it happens.

1.there is still a lot of ignorance ,which means generalisations,preconceptions,lack of understanding and putting people in a box.

A lot of people of people equate Autism with learning difficulties. A lot of people equate Autism with being a genius but with no common sense/life experience. Both sides of the same shit coin of "aww bless ".

2. The insistence of equating any and all abusive,antisocial,negative behaviour with Autism. It creates and perpetuates a very negative view, which means that people with autism tend to start on the "wrong" foot and then have to prove themselves. A lot of the time they'll end up victim of confirmation bias.

3. The inflexibility when it comes to "this is the real world". Yes there are certain rules,customs,respect,laws etc but a lot of people can't or won't make the effort to at least realise that they can easily change some things for the better when it comes to helping people with autism. Even things that are quite silly and unimportant in the grand scheme of things, but that could make a massive difference to someone with autism,make their life that tiny but easier,nope "they need to learn to live in the real world".

elliejjtiny Thu 18-Jun-20 19:13:46

@ThunderRocket that's awful, like someone saying nobody should date a milkman because they knew a milkman who was violent and they are probably all the same.

@Boulshired totally agree with this. I have one son who has aspergers syndrome and 1 who has autism with learning difficulties. They have very little in common and giving them the same diagnosis is not helpful to anybody.

ThunderRocket Thu 18-Jun-20 19:15:48

@Boulshired I also agree, we should bring back referring Asperger's as a term for those who are 'high functioning' and use Autism as the term for those who are more profoundly affected, as otherwise lay people get confused.

ArriettyJones Thu 18-Jun-20 19:19:22

TBH, we can’t agree terminology amongst ourselves. smile

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