I was invited to join a private group on Facebook for people on the Autism Spectrum. I was told that it was run very well, and that the admins kept a keen eye on posts. This was because a particular group had been spammed repeatedly with religious posts saying a certain monotheistic religion’s deity needed the person to share a post to ten groups, or his arch nemesis (a red guy with horns) would win.
Don’t get me wrong, I’m all for religious freedom of speech. I mean, I own – and have read – three different books of holy scriptures, so I’m pretty diverse and tolerant – or at least I’d like to think so.

I decided to take this person up on the offer and join the group. I’m not going to mention the name, for obvious reasons. As a private group, I had to confirm I’d read the rules before being allowed to join. Mostly, they were straightforward, like no promotion of ABA therapy or Autism Speaks, etc. Fairly standard stuff in most ASD groups I’ve joined really. But then there was a question I thought was a little strange. It read:

“Do you understand why functioning labels (including Aperger’s and Aspie) are harmful? If no , are you willing to learn?”

I was curious as to why this was the case. Sure, I understand tha functionality labels like high or low functioning can be harmful, as they’re not really applicable, and I covered this very thing in my post Higher or Lower in December. I can at various times seem either low or high functioning so I understood that bit. The term Asperger’s, though, I didn’t understand, as it’s still used as a diagnosis in the UK, even if the Americans stopped it being used in 2013. So, I answered the questions and waited.

Ping..!

“You’ve been approved to join the group”. Hurrah!

Then I got a notification to say that I’d been sent to a page explaining the question about labels, so I could be educated on why I was wrong, and the things I needed to learn to be able to stay within this group.

The article read: “No functioning labels or “ Aspie Supremacy” we’re all autistics here, there’s no need to “other” yourself in this way. Functioning labels are ableist and Aspergers/Aspie are particularly ableist as well as being rooted in Nazi history.

I thought this was a bit harsh, as I am diagnosed as having Asperger’s Syndrome.

It then continued to say “Aspergers specifically is much worse than just a functioning label. Aspergers syndrome was a functioning label featured in the DSM for 19 years (1994-2013) and has now been removed because it is inaccurate.” This is only the case in the USA – the UK still uses it. They went on to say: “The only recognised autistic diagnosis is Autism Spectrum Disorder. Aspergers was used by high functioning people to separate themselves from their autistic peers. Even if you were diagnosed with Asperger’s, it’s not ok to use that term here. If you’re caught using said ableist Nazi labels, you will be muted for 24 hrs and sent to this page to learn why such labels are offensive to all autistic people.

Really? I’m autistic and I don’t find it offensive.

What I do find offensive is the fact that I can’t refer to myself as I was diagnosed. Admittedly, mostly I’d say to people that I’m autistic, as I have a form of ASD. But to be called an Aspie Supremacist is not only rude, but also it’s the kind of attitude that drives a wedge between all of us on the spectrum. I don’t think I’m better than another fellow person on the ASD, just because I occasionally say I have Asperger’s. For goodness sake, there are times when I stutter and become non verbal or meltdown like any autistic person. We’re all one big neurodiverse tribe, so why can’t we just get along, instead of creating issues that don’t exist?

I didn’t join the group…

Stay Safe X

This is a quick scribble called “Future Stories”. Please feel free to drop me a comment on what you think.

To my younger self

Take the time out to Enjoy those precious Times, people, places. Make another memory. You’ll thank yourself in the future.

Take the time out to Heal those wounds. Keep moving forwards Physically and mentally. You’ll thank yourself in the future.

Take the time out to Create those stories; Ones that your future Generation will re-tell You’ll be remembered in their future.

I’ve had a great few weeks, creatively. I feel as if I’m really on form with my scribbles, which is unusual for me. My writing is finally at the stage where I’m just starting to believe the nice things people are saying about my poetry.

Yes, I’m finally starting to see what I do as actual poetry. I’m no Oscar Wilde, Burns or Kipling, though, that’s for sure! Still, I do share a fraternal membership in common with those heavy-hitters of the literary world. – I’m certainly happy with my creative path.

I’ve now turned my head to creating ways of advertising my work, and getting myself out there, not for fame or fortune, but in the hope that I can raise awareness of two things that I have a lot of experience with: Autism and depression.

I’m guessing there have been times in everyone’s lives when you’ve felt sad or low. It might be that, when these feelings arrive, they last for a few weeks and get in the way of day-to-day life. It could be a period of depression, which has a range of symptoms that vary from person to person, and could be mild or really severe.

It’s no different for someone like me, on the Autism spectrum, to deal with depression than a non-autistic person. I’ve done some research, and at least 20% of people in the world will experience a form of depression at some point in their lives. Sadly, it’s even more common in people who are on the Autism spectrum.

In my humble opinion, depression and suicide should be treated much more seriously. That way, it might make its way into books and education curricula everywhere and the message can be repeated over and over to our children and grandchildren that it’s ok to not be ok. We need to make it ok to talk about it.

Stay Safe X

I recently took a 4.5 hour each-way train journey to see my daughter and granddaughter. While it was a fun and exciting trip, it also reminded me of a saying: “not all disabilities are visible” because of some of the comments and ignorant attitudes I was exposed to from (in this particular experience) the older generation.

I got on the train and went to find the seat I’d reserved. I always reserve a seat, even if I’m just going one stop. The seat I had reserved was, by chance, one of the disabled priority seats. Unfortunately, it was being occupied by two older ladies, who were engaged in a loud conversation. Not wanting to cause any disruption, I sat in one of the seats opposite, which also happened to be a disabled priority seat. I got settled and prepared my iPad and my new (awesome) headphones, and was about to press play on Netflix, when I heard one of the women say to her companion “I thought those seats are for disabled people”. I bit my tongue and let it slide, until the conductor came round to check my ticket. I then showed him my e-ticket and announced (rather louder than normal) while showing my railcard, “here’s my disabled persons railcard!” The conductor said thank you and went on his way. The ladies were suitably silenced.

This isn’t the first time I’ve come across this type of attitude. It’s the same as people saying to me. “You don’t look disabled” – which in this day and (supposedly enlightened) age is wrong and damaging.

It can be easy to make certain assumptions about someone from the outside. With autism spectrum disorder, the majority of what is going on is below the surface, much like an iceberg. A smile doesn’t always mean happiness. Illness doesn’t always appear as wheelchair-bound or missing limbs. It can present itself in a number of ways, some of which are not always visible or obvious. That doesn’t mean they are less disabling than a missing limb or blindness, for example

There are numerous people all over the world who are struggling with invisible disabilities. They may also have problems with employment, due to restrictions that may not be obvious to others in the workplace. If you can prove your seemingly invisible disability, then you you may receive help and support.

No one knows how much courage it took for a person to get out of their house that day. Or how how long it took afterwards, to recover from what most people see as a small, minor outing. Should they just become a recluse to avoid the stresses of day to day life? Of course not.

As one of these people with an invisible disability I find that I have to keep providing proof to people when I go out. Even in the workplace, at times. I fortunately have found the courage to face the outside world on a daily basis. I’m not asking for a gold star or a medal for taking part – I, like most of us, just want a level of acceptance and a lack of judgement. For people to realise that having an invisible disability doesn’t mean that the pain or struggle is any less real, just because it’s not visible.

Stay Safe X

I’ve been working on some artwork to go with my Scribbles, it’s nothing special just me trying new ideas.