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.

Yes I’ve read Neurotribes. . I’m not sure I think he was a hero exactly, but I do think he saw the humanity in his patients and his ideas about utilising interests are good. He looked for a life for them and I find that fairly rare even now.
I’m not sure what he could do not to be part of the euthanasia I don’t think there was an awful lot of choice. I suppose he could have run away to America like Kanner. Would the children in his care have faired better?

I’d say that’s a given isn’t it? That’s basically what autism is. Not understanding social cues, other people’s perspectives, fixation on routines etc. It’s not negative it’s just the facts.

But it’s true, isn’t it? I don’t think my suspected ASD son understands how he makes people feel.

I briefly dated someone diagnosed with Asperger’s. He broke up with me by telling me he had been shagging someone else the whole time and decided to make things serious with her as I wasn’t ready to lose my virginity yet. In the middle of my workplace, in front of coworkers, for max humiliation. Then couldn’t understand why I didn’t want to be friends and thought I was unreasonable for looking through him.

@Nettleskeins Thank you. Had a dreadful horrible morning which resulted in dd1 (13) sobbing in my arms. But we are on our way, delayed, but getting there.

We are away next weekend for the week but it is somewhere we have been going to for years so very familiar.

I hope Monday goes ok for you.

when you get to your destination with ds, I recommend putting very few demands on him, so if he needs to just watch telly and eat cereal, perhaps let him. Our "bad"holidays with ds, one in Broadstairs, and the other in Spain, did have lovely times and he did go out of his comfort zone quite a few times, walked up steep hills, swam in the sea, was extremely energetic on many ways, visited a castle etc but I think the rest of the time we needed to do much more familiar things with him, sacrosanct screen time etc, eating familiar food, no pressure to be polite/do chores or engage.

best of luck..

He's not been too bad. DH took him to the park which helped, worrying about tomorrow and milk for when we get home.

Blooshampoo and friar tuck. You both sound unpleasant actually. Is it really hard to understand that sometimes other people whether nt or autistic may have a negative impact on others. And autistic people don't have the monopoly onot that

It's interesting to look back and wonder how the process of autism being recognised might have been different if indeed Asperger had gone to America. For one thing his paper would have been known to the English speaking world a lot sooner than it did in reality. If things had played out that way perhaps Kanner's overly narrow view of autism and how it presents would not have prevailed for so long.

LuvSmallDogs - No, it's not true because you can't make a sweeping statement like "autistic people don't understand the impact they have on people." Because it is just that, a huge generalisation. Autistic people are just like everyone else, they're all different.
Yes, it's true for some autistic people, but not all. Some autistic people will never be able to grasp a concept like that, others need some help and can learn to be more aware of such things.

zwellers - Congats on missing the point of the thread completely. How much of it did you actually bother to read?
You are right about one thing though, autistic people don't have the monopoly on "having a negative impact on others."
Difference is when an NT person has a negative impact on other people they probably actually know and understand that.
There's a huge difference between NT and autistic people having an impact on other people, for one thing the latter may not be able to help their behaviour let alone understand it.

Wow! No... of course not!

That statement was totally ignorant and untrue.

Autistic people are amongst the most sensitive and caring people I know. Please ignore these horrible comments and know that this isn’t what the majority of people think at all !!!!

Difference is when an NT person has a negative impact on other people they probably actually know and understand that. I don’t think that’s true at all. People negatively impact others all the time. I’ve had some stupendously obtuse and limiting professionals involved in dss care over the years and some in my own life.
There's a huge difference between NT and autistic people having an impact on other people, for one thing the latter may not be able to help their behaviour let alone understand it. NT people are not gifted with some sort of second sight they are empathetic and less so dependent on a myriad of characteristics.

Truthfully it can be draining living with ds, but like most hard things the rewards far outreach all that.

Autistic people are amongst the most sensitive and caring people I know.

Is that not just as bad? As in putting them all together in one group.

DS was not 'sensitive and caring' yesterday by a long shot. Sweeping statements whether negative or positive are not helpful (or indeed correct)

This thread is confusing. To be honest I don't know whether I should group all autistic individuals in one group because you can't be only slightly autistic or not because they are individuals.

I get that it's simplistic to see it as a spectrum but how should someone like me, an ordinary bog standard person without training in this area talk about autism? Things like this make me feel out of my depth and like whatever I'd say will be wrong.

This thread is confusing. To be honest I don't know whether I should group all autistic individuals in one group because you can't be only slightly autistic or not because they are individuals.

I get that it's simplistic to see it as a spectrum but how should someone like me, an ordinary bog standard person without training in this area talk about autism? Things like this make me feel out of my depth and like whatever I'd say will be wrong.

You have absolutely nailed it on the head with this comment! Thank you.

The thread is confusing because many people believe they understand autism (and can armchair diagnose it) but they can’t! It needs a qualified professional. It IS a very complex condition.

In terms of how you talk about to - talk about it in the same way as you’d talk about any other complex condition. Most people don’t have in-depth knowledge of any of these conditions (beyond personal experience) and therefore don’t talk about them as if they understand the condition in all people. Somehow autism (particularly in where learning difficulties are not present) is viewed differently and this is a HUGE problem. It gives rise to the comments such as the one this OP is about.

So - this sounds obtuse - your confusion is a good thing!

I will have a go at explaining it.

Everyone who is autistic has 4 areas where their brain responds differently from a NT brain. These are in social interaction, social communication, the way their brain interprets information flexibly, and the way they perceive sensory information. The differences are significant enough to mean that person rubs up against the expectations of the context they are in - it has to cause or have caused difficulties in daily life.

Non autistic people can have difficulties in one or two of these areas, sensory perception is a common one, but unless you have all of them severe enough to have caused you issues in your daily life, you aren't autistic. Autistic people have all the areas, but they have different"peaks" - my child's highest peak is in social interaction which is excruciating for him, my friend's son was in flexible thinking which when he was younger caused huge issues handling change.

One of the problems with "mild" as an epithet is that this is usually made on the basis of the person's impact on others around them and not on their own experiences - which are often not even sought. Many times families will tell me their child is desperately unhappy, highly anxious, suffering with their mental wellbeing - but the school will say "she's fine in school", because she isn't throwing chairs around and is trying hard to keep invisible and do her work.

Therefore all autistic people have common differences in the way they experience and perceive in a NT dominant world, but the way this expresses itself differs according to the context and the person themselves. It is not up to anyone other than the autistic person themselves to judge how a person experiences the impact of their autism.

Cross post with spectrum.

JanMeyer, ok not all, but a massive part of autism is that people with it don’t tend to be intuitive when it comes to others feelings. It doesn’t mean they’re out to hurt, or are incapable of empathising when they “get it”. But yes, they can really upset people because of their difficulties with social skills, and it doesn’t make people less upset that it’s because of autism.

OP, no, I don’t think this is true. I think the issue is more complicated.

I think many people find it difficult to understand people who think differently to themselves, and that includes people who would be classed as ‘NT’. Many people have an illness or condition that impacts on those around them and sometimes, in all honesty, that is difficult.

I think autistic people struggle with face to face social communication - that is part of the diagnosis.

However, you only have to read MN to see that some people with an autism diagnosis are very perceptive and sensitive (more so than others).

how should someone like me, an ordinary bog standard person without training in this area talk about autism?
What is it you want to be able to express? What questions do you want to ask and what opinions do you want to share?

I think what a lot of people are missing is that while autistic people may have a negative impact on NTs, much of the time it's caused by the negative impact that the NTs are already having on the autistic ones. For example, someone autistic who struggles with (amongst a lot of other things) noise sensitivity may feel absolutely bombarded by noise during the day thanks to NT people playing music loudly without thinking of others, open-plan offices designed by NT people who love the noise and chat etc., and so when they get home they desperately need quiet and need their partner / family to be really quiet. Partner then comes on Mumsnet and complains about their controlling selfish thoughtless autistic other half without thinking that actually that person has had a huge struggle to get through the day in one piece.
And zwellers may think I'm unpleasant - well that's fine but maybe I'm ranting on here because I'm sick to death of reading the shit posted on here about people with autism, and so tired of trying to fit in to a world that's blatantly not designed for people who are different in any way. If I was ranting (as I could easily) that it was a shit place for someone stuck in a wheelchair anyone who disagreed with me would be absolutely slated (and rightly so), but those of us defending our autism are seen as fair game. So I will complain, and I will defend it, and I don't give a shit what people like you think.

Well said FriarTuck

Floating you have explained that really well, thank you.

My Ds is 14 and currently being assessed for ASD. He knows he is different and has spent so many years trying to fit in, unfortunately the pressures of Secondary school have made him struggle more. He still has no behaviour problems in school and staff think he is fine even though sometimes he is struggling and very overwhelmed. He is desperately unhappy and it is having a awful time trying to communicate his needs. The school won't even provide him with a regular point of contact as they say it he wouldn't speak so it's a waste of time. Unfortunately we are at the mercy of NHS waiting lists as the school won't put him on the sen register until he is diagnosed.

Unfortunately we are at the mercy of NHS waiting lists as the school won't put him on the sen register until he is diagnosed.
. This is absolutely NOT how it should work. School should be responding to need not dx. I’m not even sure what the SEN register is in this context. They are obligated to differentiate for him and (incidentally) to identify that he may have Sen. Do you know what accommodations you think might help? Can I suggest you post on the SN board as there are many many people who’ve been down the same road and some of them are quite brilliant.

friar I get that (and fwiw open plan offices are pretty much universally hated), I get that DS has it tough, I get that he is a pressure cooker during the day and explodes once he is home. I know all that, I accommodate that, but how I and the rest of the family feel should not be minimised, being screamed at, my youngest child being on the end of his fists and feet, my 13 year old sobbing in my arms, me crying with hurt and frustration. My other children are missing out on things and quite frankly at times it is shit. He doesn't live in a bubble, I can't put him first in every occasion. He is at my parents because I want to be here, that is not me being selfish, but he has to fit into that. We will do our best to make it easier but me and my children are not going to miss out.

@Dothehappydance balancing conflicting needs is always difficult. Do the best you can. Forgive yourself when you get it wrong and of course he must bend for you too. That is how families that work, work.

I know all that, I accommodate that, but how I and the rest of the family feel should not be minimised, being screamed at, my youngest child being on the end of his fists and feet, my 13 year old sobbing in my arms, me crying with hurt and frustration
I'm not saying it's crap for you. But the difference is that you can all go off and live your own lives in time and get away from the stress. Your other kids will have their lives and will have relationships, they'll travel, they'll have successful jobs etc. But he'll have stress every day of his life just because he's autistic. It won't get better for him. He might get away from one stressor but it will be replaced by a different one. Every day, day after day, week after week, month after month, year after year.
And that's what you're all just not getting.