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.

[SnuggyBuggy]

But you were presuming to know that I thought everyone with a disabled child wished they had a child like mine.

[Itwouldtakemuchmorethanthis]

No. I said it “may” surprise you to know, not it “will” surprise you to know. This leaves room for the fact that it is possible that you don’t assume all people would prefer average children on standard developmental paths.

I’m sorry I obviously wasn’t clear enough.

To clarify, you can pity whoever you like but they don’t have to like it or feel it is warranted. I dislike being pitied especially for my family as they are. Other people may enjoy it. The sympathy may or may not be appropriate/welcome.

[SnuggyBuggy]

It still felt like a very unpleasant comment to me but I accept you didn't mean it that way.

I think there is a distinction between pity and sympathy. Pity feels one sided if that makes sense. For I example if someone said "I feel really sorry for you being married to someone with autism, I'd find it awful," but they were willing to listen to me tell them how it's not as bad as they think and how we've worked around some of the tricky parts I'd feel that's sympathy and a good dialogue. If they didn't listen and were all "I still just feel sorry for you," that would be pity and a bit

[Itwouldtakemuchmorethanthis]

Unsolicited sympathy or pity are normally unwelcome in my experience. Connecting and empathising with someone about any aspect of their life is usually a good thing, though I often find it intrusive and unpleasant if I’m honest. I don’t enjoy the feeling that people are looking for sound bites, which sadly is often the case.

[SnuggyBuggy]

I think if sympathy comes from the right place it's ok, even if the person gets it a bit wrong. Obviously it can also be an indulgent thing like when people latch on to tragedies that have nothing to do with them. It also depends on the situation and relationship, obviously not all feelings should be expressed all the time.

[Itwouldtakemuchmorethanthis]

It’s easier to forgive if it’s well meant, but tiresome none the less. I also don’t think it makes it ok for the recipient just not as unpleasant of the sender.

For example: We understand the ideas behind “putting away” of disabled children in years past. That it was seen as removing a drain on the family, removing a stigma so siblings were more likely to be marriageable and kinder to the child who would be “safe”. The intent was not cruel but the result was. The “first” identified autistic was put away in this way and his mother retrieved him a year later as neither of them could bear it. (Unsung heroes are everywhere).

[ChristmasCarrot]

I have Asperger's and my eldest daughter seems very likely to be on the spectrum. The reception I get from many people, including a fair number of 'professionals', is very hostile.

I realise that I can be difficult, but I don't really know how I can change it, especially if people are inflexible and cause me to have emotional meltdowns. A friend of mine says that I can't blame other people for being normal and it's me with the problem.

[Itwouldtakemuchmorethanthis]

ChristmasCarrot what a lovely name.. I don’t think anyone should be blaming anyone. I find if things go very pear shaped a letter afterwards explaining what you found difficult and what would help and asking what you could do to make things easier for them, can help.

[Howdoyougnu]

I think that the people receiving the sympathy/pity/compassion also have the same autonomy and can feel about it in any way they choose too. It IS sometimes abrasive and unwelcome. It’s lovely when people include us but I don’t enjoy by word or action receiving the idea that someone feels sorry for me for my child’s existence anymore than you would if I showed how sorry I was that you had to “endure” the presence of your child or partner. It might surprise you to know that not everyone wishes their child was more average, or secretly wishes they could swap them for one more like yours!

I dislike being pitied especially for my family as they are.

This

Why do you feel only your view should be expressed and that mine is rude? Of course I don’t know you or your child.
And this.

Some people just use autistic people and any conversation about them as a reason to indulge their feelings about themselves and validation of their prejudices.

They insist on blocking the voices of autistic people by calling them rude, unpleasant and even blatantly silence them.

[GaudaofEda]

Yes, this is about autonomy of autistic people and their unethical exploitation.

autisticadvocacy.org/about-asan/position-statements/
Position Statements

Unethical Fundraising Tactics Must Stop
Some organizations rely on fear and pity as fundraising tactics, invoking primitive changeling imagery to characterize Autistic adults and children not as human beings but as burdens on society that must be eradicated. These exploitative and unethical practices devalue people on the autism spectrum and others with disabilities, making our lives and those of our family members more difficult. When the message of autism awareness becomes one of stigma, dehumanization, and public hysteria rather than one of civil rights, inclusion, and support, we face a grave threat to our efforts to be recognized as full and equal citizens in our communities.

Bringing About a More Respectful World
Like any other minority group, we have the right to respectful and equal treatment in all aspects of society. Although offensive depictions of autism and disability are not the only barrier that must be confronted in the struggle for inclusion, quality of life, and opportunity for all people with disabilities, the issue is a significant one because cultural perceptions shape the reality of our lives. By challenging harmful and inaccurate representations of autism and disability, we can advance a broader and more effective agenda for our community as we seek to bring about a world in which all people with disabilities are fully included and accepted in school, at work, and in society at large.

[GaudaofEda]

A friend of mine says that I can't blame other people for being normal and it's me with the problem.

This is failure to make reasonable adjustment.

Just trying to debunk this.

In the social model of disability, the symptoms and characteristics are not the problem. They become a disability, an impairment on the contact with the systems and barriers in the society, when it is not adapted to accommodate and include.

It is easier to see with the wheelchair user. The problem is not the physical symptoms, but absence of mobility devices and accessible road planning.

By the Equality Act, the definition of disability is doing things differently in a different way.

Society needs to make reasonable adjustments to enable and accept that different way, in the case of autism, a different way of processing information and understanding the world.

For autism, the insistence of absolute and exclusive primacy of 'normal' ways of expression and processing information is disabling and discriminatory.

Blaming autistic people for the 'impact' they have on others in needing reasonable adjustments which are failed to be provided is victimisation.

[SnuggyBuggy]

Just out of curiosity would you rather someone who felt sympathy and that motivated them to make a reasonable adjustment or someone with no sympathy that didnt?

[ChristmasCarrot]

[b]Guada[/b]:

Very often society doesn't want to accommodate, or make reasonable adjustments. People who are ASD often suffer because reasonable adjustments aren't made, then suffer because we usually can't comply in the way that is expected of us. I would totally agree that it is victimisation, but how can this be stopped if the people making decisions don't actually care very much.

I also have a physical disability, although I'm not a wheelchair user. My physical issues are often, but not always, accommodated. It's much easier to say, "I need a ground floor flat", than "I can't comply in the way that you'd like me to, as I have x condition".

[b] itwouldtakemuchmorethanthis[/b]:

If people are unwilling to accommodate certain needs, it's much easier to 'blame', rather than make their own jobs harder. I've found that people will take a dislike to me, because I don't act how they'd like me to. If you don't follow their line to a 't', you're a bit screwed. Explaining in a letter would work if there was a lack of understanding, but often there needs to be a willingness to adjust, which is not actually there.

[ChristmasCarrot]

Sorry, I've just realised how to make text bold properly!

[Tomtontom]

Thanks Gauda and Carrot for some excellent points.

The lack of RAs is a real issue isn't it. One of my biggest difficulties is hyperacusis, I can't manage around noise. People don't get it, I should (somehow!) learn to like it. But then I got hearing aids (that suppress noise, but others don't know that), and now people think it's a physical issue, and suddenly they want to help. My condition hasn't changed, but a non visible disability becoming visible/ physical has completely changed people's attitudes to it.

[Chouetted]

People like to tell me off for wearing headphones while talking to them, especially if I mishear what they say. Sometimes they'll aggressively insist that I take them off.

There's a train conductor that likes to wave his hand aggressively in front of my face while I'm looking for my ticket (I guess he can't hear me telling him this is what I'm doing?).

People in cars and driving buses flip me off or honk at me when I'm waiting to cross the road. I can only assume they think the headphones affect my eyes?

They're special noise cancelling headphones - they cut out the background hum so I can hear people better. I have high frequency hearing loss as well as the autism though, so sometimes I still need to lipread. People will still lambast me for my rudeness in mishearing them, while standing in a position that guarantees I can't see their lips.

If I explain, people apologise profusely, and allow me to put them back on.

Being autistic means that I don't understand why any of this "normal" behaviour is not rude. But it hurts me. It makes me feel unwelcome, untolerated. It means that I can apparently badly offend people just by walking down the street.

Some NTs have no understanding of the impact they have on other people.

[Chouetted]

And the really odd thing is that if I started yelling at someone just because I didn't like what they were wearing, it would be considered aggressive, challenging behaviour.

[Dothehappydance]

So, I just wanted to report back. The zoo was a success, he was worried it would be really busy, but whilst it pretty much was, the size of the zoo means it never felt overwhelmingly crowded. still need to get home, but there is wi-fi there so all will be good.

May get the fallout tomorrow though. i'm at work so will miss it

[Itwouldtakemuchmorethanthis]

Just out of curiosity would you rather someone who felt sympathy and that motivated them to make a reasonable adjustment or someone with no sympathy that didnt?
I’d like people to treat me and my children with respect and kindness. Your question has put me in mind if a trip to our local cafe a few weeks ago. It’s somewhere we have gone regularly for 10+years and my autistic child knows “how to do it”.
New member of staff.
We ordered our normal order plus cutlery and straw that are not used by most people to eat this food. The server bent over backwards to help us.
Great you think?
Well yes I suppose so, but the thing is we’ve had the same service for a decade with little fuss and much kindness. This server felt the need to ask if ds was “on the spectrum”, state that “she’d noticed him come in”, ask if he was “high functioning” and tell me about other autistic children she’d had contact with.
Fine, but I’ll admit I cried for the first time in ages that evening. I know she was trying to be kind, I know she was sympathetic...but you see we just wanted to go to a cafe for a bit of a midweek treat.

[Chouetted]

Surely feeling sympathetic and telling someone all about it are different things?

If I see someone on crutches I might open the door for them, because I feel sympathetic. I wouldn't then tell them about my friend who broke her leg, or ask how they did it, or get upset if it turned out they didn't want to go through the door at all, because all of those things are fairly egotistic things to do.

[Itwouldtakemuchmorethanthis]

I expect what I was trying to say is that not all sympathy is welcome. Kind altruistic sympathy can be hard to take because while the person may mean to be kind they aren’t always. Personally I don’t really want sympathy and pity from people I want to be accommodated but not to be fussed over or for people to need a closer relationship than is the norm as payment.
I’m probably not explaining very well. It still upsets me and I’m not sure why really. Ds loved it and I expect that’s all that matters really.

[SnuggyBuggy]

I do agree that sympathy is usually best expressed via appropriate actions rather than words especially from strangers. Maybe that waitress just had a bit of a foot in mouth moment and panicked by babbling on. It's not good to feel singled out though.

[BlankTimes]

Itwouldtakemuchmorethanthis

[Itwouldtakemuchmorethanthis]

Thanks @BlankTimes I’ll live. It’s always the little things that are my big things.