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Reframing Autism’s ‘Welcome Pack’ 2024-04-17

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Overview History Discussion
Look, it's a really positive guide, and it's super cool that this has been developed. But this needs saying.

I really dislike the way my experience and that of so many autistic people is being written out of autism's representation.

I am as boring as you can get, but I'm also an autistic person. I don't have any cool piercings, I don't have quirky hair (don't have any, actually), I'm not particularly charming, no stand out features. I don't wear bright and wild clothes. I don't use make-up. I'm CIS hetero male. Bit of a dad bod. I'm entirely unremarkable, I couldn't model for Benetton and I'm struggling a lot. But I'm invisible. I looked through the pack, and I flicked through the site and the only place I found people who were at all close to me was "Parent of an autistic child". That's it.

I don't understand this whole branding thing that's happened with autism. For the record I believe everyone should feel supported and represented and at no point would I suggest that people are excluded, but that has to mean you also have boring men and women. They are the majority, and they need support. People who aren't arty types, who aren't particularly interesting. People who don't have dyed hair, or tattoos. People who might be accountants, or builders, or working in a factory. People who need to go home and make dinner for the kids. I just don't understand how the public face of autism got mixed up with all these other perfectly great, but entirely unrepresentative things so that autistic people are consistently represented as 20-30 something female, colourful, quirky with a pierced nose and a "wacky" sense of humour. Autism doesn't mean any of these images portrayed in the press and in these pictures. How did we let it become portrayed in this way?

In truth, I'm sad and fed up. Even in diagnosis I'm not part of the in-group. Not even allowed to be autistic.
 
MNAus said:
Look, it's a really positive guide, and it's super cool that this has been developed. But this needs saying.

I really dislike the way my experience and that of so many autistic people is being written out of autism's representation.

I am as boring as you can get, but I'm also an autistic person. I don't have any cool piercings, I don't have quirky hair (don't have any, actually), I'm not particularly charming, no stand out features. I don't wear bright and wild clothes. I don't use make-up. I'm CIS hetero male. Bit of a dad bod. I'm entirely unremarkable, I couldn't model for Benetton and I'm struggling a lot. But I'm invisible. I looked through the pack, and I flicked through the site and the only place I found people who were at all close to me was "Parent of an autistic child". That's it.

I don't understand this whole branding thing that's happened with autism. For the record I believe everyone should feel supported and represented and at no point would I suggest that people are excluded, but that has to mean you also have boring men and women. They are the majority, and they need support. People who aren't arty types, who aren't particularly interesting. People who don't have dyed hair, or tattoos. People who might be accountants, or builders, or working in a factory. People who need to go home and make dinner for the kids. I just don't understand how the public face of autism got mixed up with all these other perfectly great, but entirely unrepresentative things so that autistic people are consistently represented as 20-30 something female, colourful, quirky with a pierced nose and a "wacky" sense of humour. Autism doesn't mean any of these images portrayed in the press and in these pictures. How did we let it become portrayed in this way?

In truth, I'm sad and fed up. Even in diagnosis I'm not part of the in-group. Not even allowed to be autistic.
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So glad I read down to this post. I took a quick look at the resource and turned away, almost left the thread. I too am discouraged by this type of media treatment. I understand that they are trying to help a population of young people deal with the stigma of autism, but maybe I’m just too old to appreciate being included with the cool kids, because for me it’s simply not true. Doesn’t matter that I am now officially accepted for who I am, because I am still alienated from the human race.

Still, we’re not being singled out for special treatment. Our entire culture is all about image over substance. You must not be being who you are because you don’t have a tattoo or exotic gender. Remember when cool was defined by how extreme your sport was? (More shattered femurs in those days, but fewer shattered psyches.)

My point? I think it’s all marketing. First step to exploiting a market is to define it. You can’t sell treatments and trinkets and t-shirts and voter ads to people who haven’t been indoctrinated into who it is they want to be. Autistics, by nature, are difficult to get a handle on, but are nevertheless an emerging market. Like every other group, they’re being defined/pidgeonholed. And, of course, it would be naive in the extreme to believe that treatments, therapies and self help books are not marketed like toothpaste.
 
MNAus said:
Look, it's a really positive guide, and it's super cool that this has been developed. But this needs saying.

I really dislike the way my experience and that of so many autistic people is being written out of autism's representation.

I am as boring as you can get, but I'm also an autistic person. I don't have any cool piercings, I don't have quirky hair (don't have any, actually), I'm not particularly charming, no stand out features. I don't wear bright and wild clothes. I don't use make-up. I'm CIS hetero male. Bit of a dad bod. I'm entirely unremarkable, I couldn't model for Benetton and I'm struggling a lot. But I'm invisible. I looked through the pack, and I flicked through the site and the only place I found people who were at all close to me was "Parent of an autistic child". That's it.

I don't understand this whole branding thing that's happened with autism. For the record I believe everyone should feel supported and represented and at no point would I suggest that people are excluded, but that has to mean you also have boring men and women. They are the majority, and they need support. People who aren't arty types, who aren't particularly interesting. People who don't have dyed hair, or tattoos. People who might be accountants, or builders, or working in a factory. People who need to go home and make dinner for the kids. I just don't understand how the public face of autism got mixed up with all these other perfectly great, but entirely unrepresentative things so that autistic people are consistently represented as 20-30 something female, colourful, quirky with a pierced nose and a "wacky" sense of humour. Autism doesn't mean any of these images portrayed in the press and in these pictures. How did we let it become portrayed in this way?

In truth, I'm sad and fed up. Even in diagnosis I'm not part of the in-group. Not even allowed to be autistic.
Click to expand...
Thanks for that. You kind of verbalized something I've been feeling for a while, without even knowing that I was feeling it.

I am a 20-something non-heterosexual female, so at least I tick those boxes. But it stops there. My social media have been overflowing with "cool" representations of autism I do not fulfill. I am not an analytical brainiac hacker. I am not creative and colourful and loud. I don't even think I have a special interest - just interests that I can occasionally hyperfixate on. I'm not so quirky to make it a character trait. I don't have a unique style, I usually just wear functional and often boring clothes. I don't collect stuff - mostly because I know that it would make my place an even bigger, more overwhelming mess than it already is. I don't have much trouble socializing, I just crash sometimes sobbing at my place afterwards because I am so worn out. I don't even show much repetitive behavior when I melt down, on the contrary - I rock back and forth when I'm content and relaxed and focused on something. When things get really bad, I tend to move less and my whole body gets tense and stiff.

I will probably still read this welcome pack and even work through the workbook because I just love stuff like that. Risking that with almost every exercise in the workbook, I will feel like it doesn't apply to me, and get imposter feelings again. But I often feel unrepresented even in descriptions of autistic people. It's hard to find a niche, and it feels kind of lonely without one.
 
Does not change who I am still undiagnosed average guy a bit weird and strange good at solving real life puzzles no relationship issues, husband, dad, grandfather. Do not go out of my way to mask.just be myself.
 
MNAus said:
Look, it's a really positive guide, and it's super cool that this has been developed. But this needs saying.
I really dislike the way my experience and that of so many autistic people is being written out of autism's representation.
Click to expand...
I agree with you. When I first went looking for more information that particular resource and a few other Aussie resources are the very reason I ended up on this forum.

No, they don't mention AutismForums at all, but they were that irrelevant and useless to me that I went searching in other countries. The only Aussie resources I could find where I could talk to other people were on Facebook and Reddit - both platforms are so entirely unsuitable for our types of discussions that I wonder if the people that set them up have any actual understanding of autism.

MNAus said:
In truth, I'm sad and fed up. Even in diagnosis I'm not part of the in-group. Not even allowed to be autistic.
Click to expand...
You really should write to the government and have your say, they've actually asked us to comment and submissions are open until the end of May:

https://engage.dss.gov.au/developing-the-national-autism-strategy/
 
I'm really not into soft sciences they make a lot of nutty theories not strongly supported by facts the way hard sciences, are why I like debating my sister on economics, she is a trained geologist and economist, crazy mix only a fellow Aspy could pull off.
 
To be honest, I don't read any of the "in" things about autism, because of how unrelatable it is for me. I'm trans and bisexual, but it's all of the boxes that I tick in that department, definitely not a fashion person, I wear the same things over and over again and dress for comfort, no piercings, tattoos, dyed hair. I'm not funny and don't aspire to be, don't have interpersonal issues. I have a "boring" responsible career, I'm not an artist, I like to come back home early and relax on my sofa, not party. I wondered recently whether to write a thread about it and... the issue with politics, but it's a separate inflammatory topic - basically that certain views are "in" now, and I suppose they might be right, but I'm just a boring engineer working, taking care of myself, simply trying to survive and not able to keep up with all the news in the media. I'm not up to date and then I say something, which I might even agree that is somehow hurtful or discriminatory if explained, but I'm vilified by some of these people, because I'm (despite being trans) a nearly 30 years old white male programmer - the essence of a bad person and capitalism and "the system". I mean, sure... uh... the reality is that I'm just trying to survive, like everyone else, every once in a blue moon I'm socially awkward, god forbid (that's spite and bigotry, looking down on them, according to some), and I'm a live and let live kind of person.
 
With the exception of being young, tattooed, and having a ring in my nose (none of which matches me), I am the thing that others here seem to be saying they aren't, and critiquing the the resource for picturing.

I have weird hair. I dress funny. I am loud, and strange, and creative, and uniquely interesting. Plus, I like cats (irrelevant to current discussion, but still true).

I am not opposed to literature using photos that suggest that I may be fun and/or interesting, or that my life might include joy and pleasure.

To each their own.
 
My wife is NT she likes to colour her hair sick of being the blonde so it's not just use Aspies that want to be different.
 
Just to reiterate, because I certainly don't want this conversation to come across as trying to exclude certain groups, it's not saying people different to me shouldn't be pictured. So it's not a critique of ANYONE being pictured. I'm being very careful to make sure that's clear here, because I am aware how easy it would be to cause offence. Nor is it about tick-boxes, and pigeon holing. What I'm saying is that for some reason a certain branding has been generated that uses an image of autism that just isn't representative, and I feel that's both intentional and highly unhelpful.

Until a few years back, it was all about the Good Doctor cliche. Young, male, usually white, who despite struggling with some things was also a hidden genius and who, with careful assistance, could learn to do things that "normal" folks could. And that was a terrible generalisation that coloured both how NT folk saw autism, and also caused a lot of autistic people to question themselves.

We really don't need a brand for a disability. All the people in the pictures are wonderful, and if you associate strongly with them that's wonderful too. But it's been curated to portray an image of autism that I feel is misleading and that's problematic when it's not 'customers' you're losing, but those who need support.

I get that you need to have visually appealing people in branding. But I also think "we" should take care in how the disability is being portrayed.

I was in two minds whether to post the original comment, and still am as to whether I should. Thanks for understanding and the constructive conversation, and lovely to see how we help each other. All the best.
 
A lot of us do not see ourselves as disabled or in need of assistance. or pigeon holed to have a particular way of doing things or being seen as all being introverts, who hate socializing.
 
Ronald Zeeman said:
A lot of us do not see ourselves as disabled or in need of assistance. or pigeon holed to have a particular way of doing things or being seen as all being introverts, who hate socializing.
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Indeed.

One of the things I love about this place is that there is an implicit recognition and acceptance of the diversity of people with autism. If you put pictures of us all up on a wall we'd see a wonderful mix of people, though I recognise we're a self selecting crowd still. I wish we could somehow bottle that and sell it to anyone wanting to speak for or to autistic people. Real humanity, real people. Uncurated and raw. You're a lovely bunch, I'm glad everyone found a home here.
 
MNAus said:
Just to reiterate, because I certainly don't want this conversation to come across as trying to exclude certain groups, it's not saying people different to me shouldn't be pictured. So it's not a critique of ANYONE being pictured. I'm being very careful to make sure that's clear here, because I am aware how easy it would be to cause offence. Nor is it about tick-boxes, and pigeon holing. What I'm saying is that for some reason a certain branding has been generated that uses an image of autism that just isn't representative, and I feel that's both intentional and highly unhelpful.

Until a few years back, it was all about the Good Doctor cliche. Young, male, usually white, who despite struggling with some things was also a hidden genius and who, with careful assistance, could learn to do things that "normal" folks could. And that was a terrible generalisation that coloured both how NT folk saw autism, and also caused a lot of autistic people to question themselves.

We really don't need a brand for a disability. All the people in the pictures are wonderful, and if you associate strongly with them that's wonderful too. But it's been curated to portray an image of autism that I feel is misleading and that's problematic when it's not 'customers' you're losing, but those who need support.

I get that you need to have visually appealing people in branding. But I also think "we" should take care in how the disability is being portrayed.

I was in two minds whether to post the original comment, and still am as to whether I should. Thanks for understanding and the constructive conversation, and lovely to see how we help each other. All the best.
Click to expand...
I can’t see anyone thinking that you posted with the intent to exclude anyone or any group. FTR, my own comments were also not intended to be exclusive. My point was about the forces that haunt the background of your comments. IOW, trying to identify who is responsible that, “For some reason a certain branding has been generated…” and that it’s “intentional “.

I agree that it’s happening and it’s not helpful, and was suggesting who/what is responsible. The marketeers has been dissecting society into discreet little addressable sections for decades and what you’re seeing but not liking is that process of us being defined for packaging and sales. The exclusion plaguing our society is a byproduct of the market segment definition process, where they convince us we’re each members of a special interest group in need of their product/advocacy.

Not exclusionary, just a theory of who generates the divisive forces.
 
The Pandector said:
I can’t see anyone thinking that you posted with the intent to exclude anyone or any group. FTR, my own comments were also not intended to be exclusive. My point was about the forces that haunt the background of your comments. IOW, trying to identify who is responsible that, “For some reason a certain branding has been generated…” and that it’s “intentional “.

I agree that it’s happening and it’s not helpful, and was suggesting who/what is responsible. The marketeers has been dissecting society into discreet little addressable sections for decades and what you’re seeing but not liking is that process of us being defined for packaging and sales. The exclusion plaguing our society is a byproduct of the market segment definition process, where they convince us we’re each members of a special interest group in need of their product/advocacy.

Not exclusionary, just a theory of who generates the divisive forces.
Click to expand...
Understood. I only put that in to ensure that as the thread continued that intent was kept in my mind.
 
That's also how I understood it, that a person who dresses in alternative fashion catches the eye and this representation is a result of branding.
 
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