What is wrong with the autistic community?

I hope my message comes across properly. I spent 20 minutes writing this before going to sleep because I really needed to get it off my chest.

Around this time 6 months ago, I was at my student house on my own as everyone else had gone home for Christmas. I was desperate to hide from the world that I hated.

On Christmas Day while everyone else was opening presents, having dinner with friends and family and sharing love and Christmas cheer, I was sat on my own in a dark room, eating tuna straight out of the tin with a bottle of wine on the side.

I felt hopeless, desperate and alone. No one understood what I was going through, and I wasn’t sure how much longer I could go on for.

I didn’t go to or flopped each of my university exams. I barely even left the house except to go and visit my little mate, an autistic non speaking boy who I felt was the only ray of sunshine in the world at that time.

Fast forward to mid-January when I bumped into the fabulous Kieran Rose on Twitter (I spent most of my time during this period on social media) and he introduced me to the online autistic community. From that moment, my life changed for the better. I reached out in a Facebook group for autistic people, and I got responses from dozens of autistic people who had either been through what I was going through, or who were currently going through it with me.

That night I didn’t sleep. Not because of stress and anxiety like every other night of the past month or two, but due to excitement and hope. I finally found a place where I belonged and it felt amazing. At the same time I met a group of passionate autistic advocates who are fighting for a better future for all autistic people. A group I am proud to still be a part of.

However, as I spent time discovering myself and building bonds with people in the community, I also saw some things that weren’t as pleasant. There were other people who were opening up, but rather than being welcomed, they were attacked for using the wrong autism terminology, for saying they struggle with being autistic or because they were sharing success stories of other autistic people. This wasn’t the community I signed up for. If this was the response I got after opening up, my life would have followed a completely different path. I hope that these people have all found a place where they feel happy and supported.

I get it. Having to deal with people talking about curing autism, harmful practices and other nonsense online constantly can get really frustrating and can leave us short tempered, when we are simply trying our best to support autistic people. But for some people, the online community is all that they’ve got, and they have as much right to be a part of it as you do, just like their views are just as valid as yours.

You might not like posts that are positive about autism. That’s ok. But that doesn’t mean that I can’t celebrate being autistic every once in a while and maybe also spread some positivity for people who need a little something to brighten up their day.

You may not like it when people say they are struggling with being autistic as you believe autism should be celebrated. That’s ok too. But I am still allowed to struggle and search for others who are also struggling that I can empathise with.

It can be frustrating when people use the wrong terminology to refer to autistic people. But this doesn’t mean they deserve to be left feeling ostracised by the only group of people they may relate to. They are on their own learning journey, just as you are still on yours.

In real life, I visit a lot of autistic children and their families and provide advice and support. There is one thing I say to everyone I visit:

“The most important thing for you to do as an autistic person is to stop comparing your life to the life of others. Only then can you learn to accept yourself and be happy.”

I think this statement applies to the autistic community too. People are different and as a result will have different views, and that’s ok. Sometimes their views will change over time and become similar to yours. Sometimes they won’t. Either way, how they think and feel is a direct result of their life experiences. Their view is just as valid as yours, so as long as they aren’t causing harm to anyone, please let them be. How boring would the world be if everyone thought and acted the same way anyway?

I receive negative comments about some things I say too, and as a result I sometimes question whether or not I actually belong in the autistic community. I know a lot of other autistic people also feel the same way I do.

If you see something you don’t agree with that is written by an autistic person, please try your best to just ignore it. Think about how much energy you’ll save my moving on and thinking about something else. If that doesn’t work, think about the other person. You don’t know what they’re going through. They could be desperate or worse, and one comment can have a much bigger impact than you may think. Your time would be much better spent writing something positive to someone else.

We are alone enough in the outside world as it is. PLEASE help to make sure we as a community have at least one place where we can unite, support each other and communicate with others who understand. Otherwise, future autistic people may not be as lucky as I have been this year.

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7 thoughts

  1. I’ve found the same thing. It’s disappointing because, after 46 years of not belonging, I finally thought I could, but I find it’s really not much different than before. There are many wonderful people who understand me and that’s great, but some autistic people are mean or argumentative for the sake of it. I’m so confused about terminology right now, my head is spinning. I’m autistic, that’s all I know. If somebody says, I ‘have’ autism, I might twitch a little, but it’s more important that they accept me, yes? I do get annoyed with parents who’s agenda is about their needs, rather than their autistic child’s, but I’m slowly learning to walk away as I can’t handle the arguments on social media. Life’s hard enough without all this ‘in-house’ arguing, eh?

    Liked by 4 people

    1. The parents who put themselves before their children are who frustrate me the most (they also seem to be the people who are determined to push person first language). I’m really hoping that something changes soon!

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  2. No. Ignoring people’s harmful commentary on things is absolutely and 100% not an option. That is something that absolutely should be called out when it’s posted, especially in a public forum where other people can see it.

    Liked by 1 person

  3. Same. Word. It didn’t used to be like this in the online Autistic Community. I have a number of theories why it’s going on now. That said, I’ve been a fringe part of the Autistic Community since the internet became a thing. Even when we had a world in SecondLife…the coolest part is that we all could come together, in our differences, and we were accepted and united under Autism.

    Personally, I do not think it’s the Actually Autistic Community doing this…but rather millennial wannabes who have infiltrated and taken over the ND Community. For what it’s worth, my gay and trans friends are posting these same sentiments…it seems anyone older than unlaunched young adults feel this backlash.

    My daughter, an Autistic Millennial, shares that millennials agenda of all are equal, but they are clearly more equal than all….has to do with a number of becoming adults idolizing Sherlock Holmes and envisioning being a psychopaths is a great thing…and argue, psychopaths (albeit wannabe ones) and pedophiles (god only knows if they are really harming children in their pretending), and those with NPD…all classes of people lacking ANY ability or potential for empathy for others. And for whatever reason these young millennials argue they deserve equal rights.

    So essentially, pedophile wannabes are attacking Autistics in Autistic Communities….for being Autistic. It’s internalized Ableism 101

    Liked by 2 people

  4. I avoid online communities for exactly that reason. Just when I found a group of people like me, I find that is not enough and as much as I’d like to think I’ve found kindred folk and friends, it turns out not to be the case. Even the misunderstood seem to still misunderstand me, and I’m back in the same old cycle. Now I keep away, its taken many tries to realise it’s just not for me. I just cannot connect, not the way it’s supposed to be.

    Liked by 2 people

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