I know it’s been a very long time since I’ve updated – not that I haven’t wanted to, but it’s been a mix of the usual autism spectrum difficulties of difficulty multitasking when other things are going on, difficulty switching from one task to another, difficulty getting organised. I have been tweeting now and then though – Twitter is easier, somehow. You just pop in and post very short updates. And Twitter is what I want to write about here – or rather the very specific autism spectrum hashtags that have really been taking off lately.

First the autism community were boycotting the #AutismSpeaks10 hashtag – while Autism Speaks is celebrating its tenth anniversary, the autistic community were drawing attention to the fact that Autism Speaks actually doesn’t give them a voice, and constantly portrays autism as a terrible tragedy, using outdated stereotypes and attitudes which are very harmful in terms of how society sees people on the spectrum. So we were posting giving our perspective, using the #ActuallyAutistic hashtag. As we were posting our tweets and retweeting other people’s tweets, we started to develop a sense of solidarity, and I think it is from this that the next big hashtag emerged. The #HighFunctioningMeans hashtag.

If you are on Twitter, I recommend you take a look and follow it. Or even if you’re not on Twitter – you can take a look here. And if you have a Twitter account, or decide to make one, you can join in with tweets of your own. It’s about the frustrations of what it means to be labelled ‘high functioning’ – what this means in reality, how people in society view us, the secret struggles that no one knows about, the misconceptions in particular. The hashtag’s been going a couple of days now, and I hope it lasts longer. If you want to follow me on Twitter, I’m @appleshoelace there.

I’d love to post all the tweets here, but that would take a very long time, so I’ll just post a sample, and urge you to check out the hashtag for yourselves. These are things that are clearly striking a chord with many of us, considering the number of favourites and retweets.

someone else thinks you could learn to stop being disabled if you tried hard enough

“You’re not like MY child”. Actually, i WAS that child.

“you can’t have autism. I should know; my cousin has it and you’re nothing like him. I’m an expert in autism.”

not getting a job cause of disability but also not getting benefits cause in theory you could work.

writing 2500 words on organizational dynamics in an afternoon but struggling to routinely eat/shower/sleep.

awareness of your limits is treated as low self-esteem and learned social caution is treated as anxiety to overcome.

“Oh, I don’t mean YOU. You’re, like, normal and stuff.” But you do mean me.

people get annoyed at you when your shows; disbelieve your diagnosis when it doesn’t. Often on the same day.

no one sees you’re struggling because you’re so “articulate” & “self aware”

And a few that I wrote:

working out:

1 how to ‘act normal’

2 its necessity for survival in an NT world

3 the huge cost in energy and integrity

if you express your struggles, you’re not fit for work, but if you express your abilities, you don’t need support.

fighting our own way, confused but persistent, in a world that doesn’t understand us, but thinks *we* lack empathy!

I can fake ’normal’ when things go well, but when I’m unwell, PMSing, or fatigued, I have no more energy to fake it.

being afraid to disclose your diagnosis, because people either disbelieve you or treat you as incapable and stupid.

These are all issues that really need to be raised, as they highlight the lack of understanding and support from the neurotypical world for those of us who are ‘high functioning’ – who can talk and live independently and often work and act ‘normal’. These tweets, and the many more that can be found on Twitter, speak for themselves.