The social media 'attention' on autism

[OnyxM]

So I'm navigating a well known pictures and albums/pins platform trying to find posts regarding autism and autistic people and I'm suddenly swarmed by hundreds of posts, most of which are about either 1) autistic kids or 2) the PARENTS of autistic kids.

I get it..parents of autistic kids are brave and bad ass for having to 'go through' autism in their kids and they're so tough for defending them and they want to desperately share 'what it feels like to have these struggles' and blah blah blah..but you'd think that in our year you could find more posts about autistic people themselves and THEIR stories and struggles in ALL ages..I'm specifically referring to posts not scientific documents or articles, I can easily find those everywhere even here.

I'm just confused by this because it seems that even in this area of interest, neurotypicals somehow still have the 'most attention' by constantly making it about themselves..you know what it's like for them to be around autistics, deal with them or raise them, etc..

Not that they do it on purpose or anything, but it seems like even in the internet autism is still a supposed 'mystery'. I think the same occurs with ADHD too. You'll find a million of posts about ADHD people's PARENTS or about little kids with ADHD but barely a sufficient amount of content for adults with ADHD. It kinda pisses me off
Sorry for the rant, had to say it :l

 

[Neonatal RRT]

At the age of 52 and having worked with the public in the hospital setting, I see a lot of this behavior. So many parents want to make it about themselves and their struggles with their children, regardless of the diagnosis. I've even seen pathologic Munchhausen syndrome,...and parents get arrested by the law,...crazy things. The sad part is that these parents, often are doing this out of some sort of advocacy for their child, even out of love, but somewhere along the way it gets a bit twisted,...controlling behaviors, insecurities, frustrations, etc. Parents of chronically ill children can, at times, be a serious pain to deal with.

Now, I can understand where these parents get frustrated with all the "helpful advice" given by others who have zero idea what it is really like to raise a child, let alone one with "special needs". I get that. Perhaps some of these social media posts are out of some need to let others know,..."Just keep your advice to yourselves,...you have no idea what you're talking about."

Now, as far as people with autism being their own advocates on social media, this forum is a good example of one. However, I think it can be difficult for many of us, including myself, to be on the "broader platforms" like Facebook. There is so much false information, misleading and derogatory memes, bullying, and low intelligence on there, it just doesn't suit me. Even within the autism groups on Facebook, I had to quit because there was a handful of people that were serious "social justice warriors" that were internet bullies whenever someone worded something wrong,...in some convoluted way, came off to them as "offensive". I am 52, and definitely not "woke" enough for this crowd. Frankly, I have a difficult time believing some of these people actually had autism.

Many of us are not "social butterflies" in need of social interaction and conversation,...many of us would be classified as "introverts". That said, the fact that there appears to be a general lack of awareness and conversation around what it is like being an adult with autism,...does not surprise me in the least.

 

[Mia]

I'm just confused by this because it seems that even in this area of interest, neurotypicals somehow still have the 'most attention' by constantly making it about themselves..you know what it's like for them to be around autistics, deal with them or raise them, etc..

Given that autism is genetically inherited, some of the people raising children with autism have autistic traits themselves. They are likely undiagnosed, 'made' to fit in from early on and may see their children as difficult.

My parents had autistic traits but were raised to supress them.

So they and others perceive their children or grandchildren to be spoiled or bratty or uncontrolled in some way. Because they had to hide anything outside the acceptable 'norms' of social convention.

In my parents and grandparents time, they would have been sent off to either a sanitarium or a government home for girls or boys if they had noticeable traits. Or they would have been placed in the military to control their behaviour.

It's highly possible that parents with autistic traits, find it doubly difficult to raise children with traits or behaviour that are familar in some subliminal way to their own repressed early childhood traits.

 

[The Pandector]

Last year an incident led me to analyze (once again!) my alienation and social incapacity. I feel like I've learned to recognize internet BS and separate the real and useful from the vast majority. Because DSM 5 took a different approach, I was finally able to recognize myself in autism. I searched until I was certain. My life began to make sense.

But I had a very nagging feeling that these authorities simply did not understand my situation. They were correct as far as they went, but...

Finally it occurred to me to leave off searching for what autism is LIKE, and start searching for what it's like to BE autistic. It took very little time from there to find my way here to this forum.

When I read what the authorities say, I still felt hopelessly alone. When I began to communicate with others who understand, my life took a definite change for the better. Thank you, all, for showing up.

 

[Kalinychta]

I think it’s because there’s such a big stigma about being an autistic adult. You’re expected to have “gotten over it” by the time you reach a certain age, and if you haven’t then it’s because you’re lazy or immature. Autistic people will talk to each other on forums like this, but it can be really embarrassing and even dangerous/damaging to talk about it in the open. Also same reason adults don’t talk about their own struggles with mental illness or addiction. In our culture they are seen as weaknesses. We’re supposed to have “free will” and be in control of our behavior.

 

[OnyxM]

I think it’s because there’s such a big stigma about being an autistic adult. You’re expected to have “gotten over it” by the time you reach a certain age, and if you haven’t then it’s because you’re lazy or immature. Autistic people will talk to each other on forums like this, but it can be really embarrassing and even dangerous/damaging to talk about it in the open. Also same reason adults don’t talk about their own struggles with mental illness or addiction. In our culture they are seen as weaknesses. We’re supposed to have “free will” and be in control of our behavior.

'Kalinychta'..are you Greek btw?

 

[OnyxM]

Thank you all for your insights on this. I agree with all of you, you all kind of wrote what I've been thinking in many cases. It's definitely a huge benefit for all of us to have websites and forums like this one where we can chat and share experiences. Maybe the majority of the internet isn't yet very aware or filled with autistic adults sharing their stories but at least we do have places like this. At the end of the day that's all that matters. If it weren't even for forums like this many of us wouldn't stand a chance to get a 'first hand' look at what autism is like in people similar to us and have help in gaining the right insight!

 

[Soleil]

I think the media focus on ADD/ ADHD also tends to focus on kids, leaving adults out of the conversation entirely. Maybe it's because ADD/ ADHD and autism are frequently diagnosed in children, and not adults?

I don't think other kinds of neurodiversity have this; I don't recall seeing things about parents of OCD children, or children with Dissociative Identity Disorder; those tend to focus more on adults (though admittedly I haven't really looked into it).

 

[Tom]

There is a tendency to not always think of us as people but as a disorder/disease. So parents (or outsiders) can view themselves as the sufferers of a disorder (us) that effects them.

 

[Qoyote]

I think it’s because there’s such a big stigma about being an autistic adult. You’re expected to have “gotten over it” by the time you reach a certain age, and if you haven’t then it’s because you’re lazy or immature. Autistic people will talk to each other on forums like this, but it can be really embarrassing and even dangerous/damaging to talk about it in the open. Also same reason adults don’t talk about their own struggles with mental illness or addiction. In our culture they are seen as weaknesses. We’re supposed to have “free will” and be in control of our behavior.

Maybe it's cause most people only encounter "special needs" people in public school, and once they become adults they don't know when people are hiding it and never meet/talk to anyone who can't. So they associate it with kids when they shouldn't.

Also people throw around words like "mild" without knowing what it means. Like, its impact's mild compared to the strongest autism, not mild as in "a mild inconvenience".

As a young adult, my biggest surprises on this forum are

1. Age. I've never seen another forum where so many 40+ people mixed with young people, even other forums for things you can't talk to people about. It proves to me that the "only young people have autism so they're overdiagnosing it" thing is at least mostly a lie.
   
2. Different levels of autism. It's presented really often as "some people grow out of it after high school, other people are crippled for life", no in-between, and since I'd never had other autistic friends or admitted how much autism still affected me, I guess I thought so too. It even hurts the non-autistic parents. Mine were terrified until I started talking.

 

[Thinx]

I think the media focus on ADD/ ADHD also tends to focus on kids, leaving adults out of the conversation entirely. Maybe it's because ADD/ ADHD and autism are frequently diagnosed in children, and not adults?

I don't think other kinds of neurodiversity have this; I don't recall seeing things about parents of OCD children, or children with Dissociative Identity Disorder; those tend to focus more on adults (though admittedly I haven't really looked into it).

I think Dissociative Identity Disorder tends to have been produced through extreme abuse, this might explain why parents of children in that category aren't posting about it. It's estimated that around 90% of cases are associated with childhood abuse.

 

[AprilR]

Yeah, this is sooo frustrating. I think a lot of these parents with victim mentality need therapy.

As a teenager, i had to learn not to expect some things from my parents because they are human too and they also have needs. They are not endless sources of unconditional love and understanding. Their love and support capabilities are also Limited because they grew up in an inherently ableist society.

That said, i was able to come tot his understanding because i could manage some of my needs on my own. Some of the autistic people however cannot do this. Their needs forever go unfulfilled because of abusive and neglectful parents it is just depressing to think about.

 

[Kalinychta]

'Kalinychta'..are you Greek btw?

No! I can’t remember why I chose “Kalinychta.” Ha!

 

[OnyxM]

No! I can’t remember why I chose “Kalinychta.” Ha!

Haha I saw the word and thought you might be xD You probably saw it somewhere or heard it and it stuck in your mind

 

[OnyxM]

Yeah, this is sooo frustrating. I think a lot of these parents with victim mentality need therapy.

As a teenager, i had to learn not to expect some things from my parents because they are human too and they also have needs. They are not endless sources of unconditional love and understanding. Their love and support capabilities are also Limited because they grew up in an inherently ableist society.

That said, i was able to come tot his understanding because i could manage some of my needs on my own. Some of the autistic people however cannot do this. Their needs forever go unfulfilled because of abusive and neglectful parents it is just depressing to think about.

It is indeed depressing. I rely a lot on real people's stories shared on the web to gain more insight on myself and it did help me greatly in my discoveries so I get frustrated when I see info about us being monopolized by experiences of non-autistics. I guess it's also the fact that maybe autistic people aren't yet posting/sharing enough info in social media :l

 

[Hylian]

I don't really think most NTs view us as "autistic people", they view us as "people with autism", if that makes sense? To them autism isn't an integral part of us, it's something that's afflicting us and needs to be treated and fixed.

Things about autistic children seem to get more attention because it's easier to pity kids and their parents "dealing" with the affliction of autism. As an NT it's easier to put yourself in the NT parents shoes and think about how hard it would be to have an autistic child, and also to compare the child to NT kids you know and go "Oh, that's so sad that he/she doesn't get to/can't do X/Y/Z that my kids can do."

Verbal adults and adults that can advocate for themselves don't get the same amount of attention because we're not as easy to pity. We're more of a nuisance to employers/friends/family etc. with our accommodations and limitations that we should have "grown out of" or just "shouldn't need/have". NTs can't relate to or pity autistic adults, so they often don't care enough about our issues to talk about them or pay attention to them.

 

[ZebraAutismo]

I like to look at the #actuallyautistic hashtag for content by actual autistic people. The abundance of parents compared to disabled people them selves annoyed me. Plus so many of the parents over share their child’s life. Like don’t share potty training and melt downs would you like people to know that about you.

 

[zozie]

I follow a couple of autistic self-advocates on Instagram and YouTube. @autisticats on IG is one that I really like -- I think it's a handle that has several people who post, and recently did some really effective breakdowns of that Sia movie, Music, as well as some awareness posting about stimming.

Autistamatic is a YouTuber that I follow through Patreon, who's been making videos for a while and has a lot to say about the ND-NT relationship, he being married to an NT. His advocacy is especially geared towards bridging the gap between ND and NT communication and understanding.

As for other social media, Facebook eats my soul and I don't do Twitter. Just Instagram posts and YouTube.

 

[Booknerd515]

I don't tend to look at autistic content on Facebook that often. However I know my mom has posted things about me and my brother being autistic on Facebook because she has been using an account on there for several years. So sometimes she may show me articles on there and I will read them for common decency.

Apart from this forum, I don't tend to look at things on social media about autism as my online activity is tracked by my mom. I tend to stay away from most of the more popular social medias due to social anxiety.

As someone with a multiple personality condition with memory loss and several alters that have been mistaken for dissociative identity disorder before (which typically tends to develop in those around the ages of 6-9, not adults like me), I can agree that DID and multiple personalities are significantly less known than autism even though there are other autistics like me with those conditions. I have experienced emotional trauma in the past and my life feels like a literal nightmare because it is in my mind as that's something that can't be easily solved by therapy. If it was easily solved, I'd just have one personality and wouldn't I be depressed. Several others I've communicated to online around the same age as me even have had undiagnosed DID for years and they're wary about telling their family about it because they know their family hasn't acted well towards them in the past. Some even have parents that hate them just for being autistic. There are others suffering out there even if it's not known or diagnosed for them. Some NT parents are good and adapt to children with special needs, but not all are.