Prologue- Today is nationally known as “Autism Awareness Day” which was created by a terrible eugenics group- disguised as a charity- called Autism Speaks. Please avoid Autism Speaks at all costs. This is the last place you want to go for information or donate your money. They speak over us, not with, for or by us, and they come from a Neurotypical viewpoint of Autism being an insidious disease that ruins marriages and is seen as “worse than Cancer”. They support an extremely toxic narrative of Autism, and barely any of their donations go to family support, only 4%. The majority of their funds to go marketing and researching a “cure”. There is no cure, and the majority of us don’t want one because it is an integral part of who we are, it can not be separated from us in any way. Besides, the world would be extremely plain if there was no Neurodiversity. Autism Speaks supports abusive techniques like ABA therapy (applied behaviour analysis) to make people with-hold their natural behaviours. It’s kind of like dog training, punishing people for displaying their natural responses and rewarding them for what they see as “good behaviour”. This may seem like a weird example but imagine being punished every time you needed to use the toilet, a completely natural and necessary bodily function. It’s much the same as Autistic people being punished for using stims (self-stimulatory behaviour) that are a necessary soothing mechanism, and to withhold them can cause great mental distress. Just like if you had to hold your bowel movements! It’s nothing but abusive and harmful, or in the very least, pointless! We- the actually Autistic community- see Neurodiversity as a completely natural and integral part of society, and to attempt to eradicate it is an impossibly bleak prospect.
artist: @hvppyhands
To rise up and counter the Autism Speaks Light it up Blue campaign, we wear #RedInstead and we have reclaimed it as #AutismAcceptanceDay, because we’re pretty sure everyone is already aware of Autism, but that’s just not enough. We need acceptance, allies and real understanding.
artist: @hvppyhands
Autistic lead organizations to support & receive support from: Yellow Ladybugs (for Autistic girls), The Autistic self-advocacy network, I CAN Network.
One year ago, I made a blog post for Autism Acceptance Month coming out to the world about the fact that I had recently been diagnosed with Autism Spectrum Condition. Some may think that was a bit bold, a bit too personal a thing to share on the Internet. Sure, it was a little scary but… I feel it was something I just had to share because it changed my whole perspective on a lot of things. I was happy! Why wouldn’t I want to share it?
Those early days were honestly like a ray of light cracking its way through clouds and shining a light onto my life in the best way possible. Self-knowledge is power, and when you know yourself, you no longer feel lost. Being diagnosed as Autistic is probably the best thing to happen to me so far because it took a whole bag-full of confusing traits and perceptions of mine and turned them into recognizable things that so many other Autistic individuals were experiencing. I wasn’t alone anymore, I had found my tribe after so long of feeling so alone. Now I could go through life with this new lense of self-knowledge and acceptance and change a whole bunch of stuff that wasn’t working for me.
One year on, I guess you could say the honey-moon phase is over. It was probably over six months in. I have learned alot since then and I thought for Autism Acceptance Month I would share some of these things.
I have learned that not everyone will be as happy about this as I was- some of my family members have barely reacted to this news, one has denied it’s presence altogether and they are now denied access to my life. Most friends avoid the subject, some even avoid me altogether. But to me it isn’t something to be feared, it is a celebration, I just wish it could be for everyone else in my life. For anyone to deny the fact that this is 100% real, is 100% offensive, aggravating and ignorant and I have learned that for anyone who denies it, I have no qualms saying goodbye to.
I have learnt a lot about self-advocacy, and the fact that we are all entitled to reasonable adjustments at work and school to help us get along (weather or not I am comfortable with those things is another story!). I have learned so much about society and the systems we live under, I have learned that there is nothing wrong with me and there never was, but there is so much wrong with that system that made me blame myself for so many years. The one-size-fits-all attitude isn’t ever going to work for so many of us and that isn’t our fault.
I have learned that the word disabled isn’t actually offensive, in fact it’s preferred, because its just a fact! Using all those other terms that people use to make themselves feel more comfortable is not the way to go. Its ok if you didn’t know that, neither did I, but now you know it’s better to just refer to disabled people as disabled people.
I have learned that Autism isn’t actually gendered. In the beginning, that narrative is what caught my eye, I identify as female, and Autism has long been more “male” (purely because the studies were all on males) and the understanding of Autism has come a long way (still a long way to go). A lot of male identifying as well as non-binary people are relating a hell of a lot to the “Female Autism Profile” just as I did. And you know what that means? It means it is not a “Female Autism Profile” at all, just another way that Autism can look that was long over-looked by professionals. I think it’s important to now move away from gendering conditions like Autism because it just leaves too many people out.
Although I do think it had been such great movement toward opening up the sphere of inclusivity.
We are the type that you “wouldn’t ever think were Autistic” (Hot tip: never say this, please, it’s very offensive!). We are the people who are a little different, but you don’t quite know why, the type you always tell “you’re so quiet!” and often see playing by ourselves. Honestly, we don’t look that different to you, but we feel so very different, and that is the hardest part of this. We look fine, we can act fine, but only for so long. On the inside we are not capable of certain things, but we don’t want to stand out like a sore thumb because we feel like we already do. We are the wall flowers, the fade-into-the-background-during-group-conversations type. We will miraculously disappear when it gets too noisy.
We are the type who relate to the animal’s way more than we do to the humans. We are the type who may seem blank but once you get to know us, have a depth as great as the ocean. We may be hard to get to know, hard to understand, distant, maybe not! I am just talking about how I feel, and you see, it won’t match everyone else.
That is something very important Non-Autistics need to understand- just as you are all different people, so are we. Just because you saw one show or met one Autistic person, please don’t assume you know us all. Please never say “It isn’t as hard for you cause you’re high functioning” because that is extremely dismissive and hurtful. We all have our own unique set of strengths and weaknesses, and something very important I have learned it that nothing can ever be judged from the outside, what’s inside is completely different.
Something else very important for people to understand -which may take a while because it has been so deeply ingrained in us- is that disability is not the issue. The issue is society’s attitude and the way it’s been set up to exclude us. The language people use may seem insignificant, but it plays a larger role in our beliefs than you may think. Pay attention to how you think or feel next time you see a visibly disabled person, or when someone with an invisible disability discloses that information to you. What are your feelings and where do those feelings come from? If it isn’t something you would openly say to that person, maybe it is something that you could try to change within yourself. It takes time, but it’s important to challenge these deeply held beliefs.
Remember- treating someone like an infant is too far the other way! Balance is key (to all things in life, my friends). Just because you don’t understand it, doesn’t mean it’s not there. I know it’s easy to default to denial but if a loved one tells you something like this please, acknowledge and love first, figure out the facts later, but the important thing is you are willing and open to learn. It would mean the world to them if you did research or asked for good sources of information to show them that you really care and strive to understand them.
You may come across many, many sources of misinformation or one-sided views on the topic of Disability or Autism and I guess it’s important to remember the best sources are those who are actually Autistic. Whenever you listen to a Doctor, Parent or news article written by non-Autistic people you are instantly going to get only one side.
Always remember the words “Invisible doesn’t mean non-existent”. When something doesn’t make sense to you, maybe think to yourself “perhaps I don’t have all the answers, perhaps there is a lot to this that I don’t actually know and maybe I should try to learn from the people who know best.” It’s so important to put ego’s aside, being wrong or right is not important. We’re never going to be perfect, me especially. I still say the wrong things, but that’s fine, because I am aware that I am only human, and I am trying my best.
As time has gone on, and the honey moon faded, it’s become hard again. Yes, I am Autistic, and I know this now which is amazing, some people have gone their whole lives never knowing. But it’s still a part of me and it’s still hard. Certain things are always going to be hard for me and that can be difficult to accept. People’s lack of knowledge is going to frustrate me, I am often going to be misunderstood, not believed, over or under-estimated. It’s tough because the majority doesn’t have the same knowledge that I do.
I now find myself with the weight of the entire community on my shoulders, I find myself needing to advocate for us all and that’s something I didn’t anticipate. But am open and unashamed and I do the best I can with the skills I have. If I can change anyone’s perceptions on this topic I’ll be glad. Please, spread the word! Autism and Disability are not all you may think!
We have so much to offer, we just need to do things a little differently. All we want is equity, because what’s the point in giving everyone the same sized pants (equality) when we all need a different size?! (equity).
Get to know us- Here is my list of Autism Profiles where I interviewed other Neurodivergent folk.
Useful links
@autie.alien
Autistic lead organizations to support & receive support from: Yellow Ladybugs (for Autistic girls), The Autistic self-advocacy network, I CAN Network.