Why do autistic adults & parents of autistic kids often not get along?

[Autistamatic]

Over many months I've engaged with parents of autistic kids who have been scared by what they've seen from autistic adults on social media, and many autistics who have also been discouraged from engaging.
These problems are not so noticeable on a forum like this due to the active moderation of real people, but on social media where moderation is lax and algorithms rule the roost, it's a major issue. Since social sites are the first place most people look to these days, it's a cause of serious concern.
I am obviously heavily immersed in the online culture we have built for ourselves too, so I took some time to analyse the rift that has arisen between these two groups who seem to have the same goals but often don't get along.
Here's my conclusions.

 

[Gracey]

Bravo.
A well thought out and useful video.

To date I've only spoken with one set of parents in real life; out of many,
whose child had been diagnosed at four years who 'got it'.

Who ask themselves 'How can we adjust to suit and help him?

Not, 'How can we change him?'
No drama, judgement, snake oil, voodoo or exploit for profit/sympathy involved.

I imagine the bleach enema to arise from pure desperation,
I'm struggling to imagine any other possible reason for that extreme action.

Thanks for the clarification on the phrase 'Autism Mum'
before your explanation I understood it as the mother of autism or an autistic mother,
which may not stray too far from the truth.

I can't remember everything you said in your video verbatim,
could you remind me if you offered an alternative, suitable phrase?
thanks

 

[Kalinychta]

Autism is “a foul scourge”—hahaha! I’ve been laughing at that for about the last hour. I love hyperbole.

It’s a great video and quite humbling, actually. It’s counterproductive to respond with annoyance or hostility to ignorant comments about autism. Good reminder. People already think we’re emotionally unstable, so biting their heads off when they say something stupid will only reinforce their ignorance and prejudice, as you said.

I wanted to add re: autism moms that the very fact that they’re actively searching for answers and becoming so frightened by the deluge of autism-is-a-foul-scourge misinformation out there shows that they actually care about their kids and want to help them. Lots of parents don’t, so it’s even more important not to scare off people who have a good chance of becoming our allies and, of course, good parents to their autistic children.

 

[Judge]

Over many months I've engaged with parents of autistic kids who have been scared by what they've seen from autistic adults on social media

Scared how? What do they fear or are so concerned about? I'm just curious.

This forum is the only social media I've been willing to interact on for some time.

Frankly given the nature of the Internet, one can find very scary people and ideas if they really want to look for them, regardless of neurological considerations.

Though I often wonder how many people really consider the obvious. That autistic children inevitably grow up to be autistic adults. It's what bothers me so much about government and media always projecting an impression that autism is confined to only children. And that there are two other levels of autism to consider besides level 3.

 

[Autistamatic]

Scared how? What do they fear or are so concerned about? I'm just curious.

That's what the video seeks to explain

 

[Autistamatic]

could you remind me if you offered an alternative, suitable phrase?
thanks

I didn't because there isn't really anything that sums it up better, and as was said in the video, parents new to autism won't know to use it anyway.
A few phrases have been suggested, all clunky and overlong, but such name changes don't tackle the problem itself.

 

[Gracey]

I agree with you although I'm at a bit of a loss as to why autism has to be included in their categorisation of self.

Why they can't just be a 'mum' ? instead referring to themselves as an 'autism mum'
- don't hear many parents refer to themselves as a hearing deficit mum, meningitis mum, cerebral palsy mum and so on.

I don't need an answer. Just one of the things I find it difficult to tolerate with some parents. Those who make it all about themselves, not so much their child.

Thanks again for the video.

 

[Autistamatic]

To be fair, it's often us that applies the label, not something they take on themselves.
Unfortunately a lot of those who voluntarily describe themselves using their child's autism as a descriptor either fall into, or are on their way towards the martyr category. Where we let ourselves down is in not recognising the difference between those with a relatively open mind who have been subjected to horror stories and need clarity and those who have made their minds up already to treat autism (and autistic people) as the enemy.

 

[Judge]

That's what the video seeks to explain

I got that, though I found it a bit generalized. I really was looking for specifics beyond things like a "foul scourge" and particularly something relative to these other domains on the Internet you speak of that you didn't identify. It's why I pointed out that I don't venture beyond this domain in terms of discussing autism in whole or in part.

Most of us are well aware of the stereotypical ways in which we are disparaged. I was just looking for something more to better try to understand such bias. In particular, wondering if NT parents of autistic children may ultimately prove the most biased if they internalize their most negative experiences with their own children.

Where they may be more prone to lash out using such stereotypes that more or less reflect their own anger and frustration more than perception alone. While organizations like "Autism Speaks" allows a sense of parental fellowship among their ranks, they only promote their interests and not really ours.

 

[Autistamatic]

When a child is diagnosed as autistic, most parents haven't a clue what that means. Most of them haven't the slightest awareness of the abuse that some of us endure.
My work is not intended just for "us". Yes plenty of autistic people watch it & derive comfort or learn from it, but it does the same for NT people with an interest. They don't necessarily know about the horror stories we do or why some of us are so touchy when we meet them.
What you are asking after @Judge is an insight into the mind of bigots, which I did not set out to do. That's a task for psychologists and sociologists. Martyr parents are just another form of bigot, just like racists, homophobes and misogynists.
They can be so wedded to the concept of "normalcy" that they are willing to put their children through torture to rid them of the factor that makes them different. It is not for the good of the child, though they will convince themselves it is. They just can't bear the idea that their child doesn't conform. They don't care what we say and nothing will ever get through to them. Logic, facts and reason are lost on them for they are so emotionally invested in their fight to make their child "normal". Anyone who argues against them will be treated as an enemy and an intelligent autistic adult is their kryptonite. That's why they frequently cast doubt on the validity of our diagnoses, even on occasion claiming to have proof that a well known member of the community is bogus.
Most parents aren't like that but we often drive them away by assuming they are based on limited evidence, hence the need to make the video.
I was not specific of where on the Internet this kind of thing happens because it happens everywhere. You'll see it on social media platforms, on specialist boards like LinkedIn, on forums run by autism charities or even forums that have no connection. It happens in places like mumsnet and on the comments pages of news outlets. It can and does happen anywhere people can talk online.

 

[Judge]

What you are asking after @Judge is an insight into the mind of bigots, which I did not set out to do. That's a task for psychologists and sociologists. Martyr parents are just another form of bigot, just like racists, homophobes and misogynists.

I was just curious to see if there was a pattern here, perhaps relative to the domains they may congregate on.

Though what you're saying stands to reason...that more or less they are everywhere. Not good.

"Mumsnet"....hmmmm.