Autism only applies to children

"It's Asperger's and Autism Awareness month! In honor of all children who struggle every day!!"

Every now and again I see similar things appear on my Facebook newsfeed from well-intentioned people trying to 'raise awareness' of the suffering that autistic children face. Inevitably with World Autism Awareness Week (27th March - 2nd April 2017) coming up, I expect to see more of those kinds of social media posts. 

There's a few things that irritate:

Firstly they claim to raise awareness and provide no education, no quick facts or anything that we can learn. If you want to raise awareness, actually provide some meaningful and useful content might be a starting point, yes?! When is Asperger's and Autism Awareness month anyway?!

This notion of universal daily struggling or suffering kinda grates on me. Actually some days as an autistic person I couldn't actually say I struggle. I've had issues all my life but I am not sure if it's just manageable (ish!) because this is all I have known or if in the grand scheme of things, I am generally okay? I avoid stuff that upsets me and that's my coping mechanism. I know certain social activities and career paths would upset me so I don't do it. Simple, right?!

Okay, I get sensory overload and yes it's unpleasant but it's not constantly upsetting me. I am one of the fortunate ones who can generally extract myself from situations before they get to the point of a meltdown. I realise too that not all autistic people can do that and perhaps I am on the end of the scale where I have fewer undesirable autism related aspects about myself than many others.

Autism doesn't impact on my mobility either so I think myself lucky that I can do lots of things for myself. 

When I think of suffering, I think of someone with chronic pain and challenges that impact their lives so greatly that a large chunk of it is utterly miserable. Maybe I am an ablest amongst the autistic demographic but I have never put myself in a category of where I feel I suffer daily. I won't apologise for that either. My lens is how I view the world and I can't pretend to fully know or understand everyone's view but I can try (despite supposedly autistic people being void of empathy - yeah, right!). Sure, life can be struggle at times but autistic people don't have a monopoly on that. 

The whole "in honour of" thing...

Are autistic people in need of celebrating or having our challenges, differences and similarities respected via a little Facebook post? We didn't pick to be like this. We didn't earn this cognitive style. It makes as much sense to me as celebrating people with blue eyes. 

WELL DONE all you lot with the eyes the colour of the sky. You worked so hard just being yourself. 

This is how we are and I think most of us, like the rest of the planet, generally get on with it the best we can?! 

It's all a bit patronising for me.

Finally.... 

There is some notion that within these copy and paste crap that autistic adults are off the radar. 

Do only autistic children count? Now you're 18, the Facebook concerned no longer bother about us. Or maybe they think we have a terminal disease called autism whereby we don't actually reach adulthood. Incidentally, I am exceeding all lifespan predictions being in my 30s... Or perhaps one of my autism super powers is cheating death by using complex mathematics?!

Hmmmm or maybe by the time one leaves childhood, we have magically grown out of our cognitive style and become fully signed up members of the "Normal Club"?! Here we have lost our sense of systemising, become extremely empathic and gained wonderful social skills to become an artful host within high society. 

Or more likely, we just get on with it. We perfect our coping mechanisms in time, we learn how to pretend we're okay, understand more about ourselves to avoid things in life that upset us and perhaps care a little less about what others think. It's not that we have cognitively changed in our essence but many intellectually higher functioning autistic people probably have adapted from where they were in early childhood.

So when I see such Facebook posts, don't be surprised if I remind the person about the existence of autistic adults. It's not to be pedantic (ok, yes a touch!) but because it's attitudes like that which reinforce the view that only those in education and young people are entitled to autism related support. This is because I often feel like the existence of autistic adults is denied unless they have comorbidities and require social care and institutionalisation. Us autistics who seem okay on the surface are often forgotten. Time and time again, I think back to my experiences of working in education and my life and seeing support in schools and colleges but it almost disappears overnight once one has left their educational institution.

So please, let's not make sweeping statements that do nothing to help anyone, spread generalisations and misinformation but also ignore a sizeable demographic with autism. I'm not sure we need your kind of sympathy...

Now, if you like, you can return to your fake news, click bait websites and videos of extremely daft people doing very daft things! 

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Facebook "copy and paste plea" posts: autism as the 'invisible illness'

Some people on Facebook can have this habit of coping and pasting well meaning but ridiculous posts such as the one below to 'raise awareness' of a given issue. This one is on 'invisible illnesses':

Not one of my Facebook friends will copy and paste (but I am counting on a true family member or friend to do it). If you would be there no matter what then copy and paste this. I'm doing this to prove a friend wrong that someone is always listening. I care. Hard to explain to someone who has no clue. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness - Ehlers Danlos Syndrome (EDS), IBS, Crohn's, PTSD, Anxiety, Arthritis, Cancer, Heart Disease, Bipolar, Depression, Diabetes, Lupus, Fibromyalgia, MS, ME, Epilepsy, hereditary angioedema, Migraines, Hashimotos, AUTISM, Borderline personality disorder, ADHD, RSD, rheumatoid arthritis , etc.

Urgh. I find this so utterly irritating not least as this example has autism capitalised as if its an acronym. 

There you go:

Always

Unique

Totally

Interesting

Sometimes

Mysterious

I didn't make it up; I found it in Google Images.

So here's the thing that irks me the most. Actually no, you'll see in a minute that there are two or three things that annoy. 

The first one: I don't personally find that I am in daily pain or feeling sick on the inside whilst normal on the outside. I appreciate some autistic people do have such sensitivities that they are in pain but please don't generalise. We are not all the same. Actually, when I am melting down, I am very much not normal on the outside. I swear and shout and my husband will testify that I am anything but having an invisible episode. My behaviour is very odd to a neuro-typical. I have had moments of shutting down and being mute but it is still clear to people who are trying to communicate with me that something is up. Okay so I don't require the use of a wheelchair and I don't need medication for my autistic 'problems' but I would suggest my difficulties are not something that can be seen on my person but rather in my behaviour. Invisible? I am not sure. I would guess to a neuro-typical person they might spot something, maybe not. I certainly find it an odd term to use.

And again, some of the conditions listed could be visible - requiring the use of a wheelchair with joint difficulties, tremors in MS, rheumatoid arthritis causing inflammation and swelling in the joints, etc.

Point no. 2: Autism isn't a bloody illness. I am not unhealthy or unwell in my mind or body and to suggest that is really not nice. I didn't catch it from poor quality drinking water. I didn't get it from eating loads of fatty foods and sitting on my bum all day watching TV. It wasn't caught after going swimming and nor was it from the MMR vaccination. Incidentally I had the MMR vaccine much later in life as my mother wanted both my twin brother and I to have it. It was introduced in the UK in 1988 so we would have been about 7 or 8. I was autistic before it and I am now, just that back then we just didn't know it. There has never been that point where I was neuro-typical and now I am not, unlike those with cancer and many of the other conditions listed where one identifies that they aren't feeling right and a disease or something medical manifests in some way. I do take the point that some medical conditions are from birth but autism in itself is not a medical condition even if it is from birth.

Point no 3: what a wide ranging bunch of things to lump together. I find it hard that one could put autism in the same category of many physical diseases. Cancer. MS. Diabetes, etc. And lets be fair, for those with well managed diabetes, what daily pain is there compared to those with Ehlers Danlos Syndrome? Or those with MS who have the horrific pains? I don't feel any pain except when sensory overload triggers a migraine but whilst it can limit what I can do whilst it goes away, I am not faced with any life shortening or life threatening problems. If I am in the position to manage my environment, the migraines do not occur so often. My autism is not causing a tumour and or damaging my nerves, joints or organs. It might impact on my mental health but I guess any factor in life that adds additional stress that pushes us to our coping limits will have a negative impact on our mental well-being. Again, lumping physical conditions/diseases in with mental health and cognitive developmental concerns is a bit weird. 

So I guess the people who copy and paste such junk feel that they have raised awareness for a long list of challenges/conditions/illnesses people can face and then they can feel smug they have done their bit but what they have done for autism is to further the nonsense that it is an illness.

If you want to help educate people about invisible illnesses, brilliant! But please read about them, educate yourself first and write a well thought out caring post and perhaps do a cake sale to raise some money to support a particular charity. Don't just copy and paste mindlessly because myths around those 'illnesses' in the Facebook post are continued and it doesn't provide the awareness needed as all it does is spread ignorance.

I am sure it is well intentioned but it is bloody irritating. Please stop!

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