Monday, 16 October 2017

Autism Awareness Month October 2017

Autism Awareness Month is in October in Canada.  Sure, we participate in the one in April, but this is just ours.

It’s sad (or good actually!) to say that most people don’t even know it is Autism Awareness Month in Canada right now.  In many ways, it is good that people don’t know.  That way they can’t ‘be-ware’ of us.  Awareness doesn’t help us.  It usually hurts us.  The general public is given scary, pathologizing so-called facts about autistic people.  That usually just makes the public more fearful and misunderstanding of us.  How does that make us included and supported in the community or even in our families? 

Is lack of awareness (that strikes me as funny!) about Autism Awareness Month in Canada a bad thing.  In this case, I don’t think so.  We don’t have as many pathologizing, fear inspiring posts to avoid, like we do in April.  Social media is a mine field that we have to avoid in April. 

The question should be, do we get rid of it (there is after all the April awfulness) or do we work on true Autism Acceptance and full inclusion in society?  I could go with either one, although if we got rid of it, I wouldn’t have to figure out something to write!  Just kidding- a little humour!  So, if we keep it and change the name to Autism Acceptance Month, will that make a difference?  I say, no.  Not the way it is being promoted currently.  It would be a change in name only as we are already seeing with some organizations.  We need to see action.  Welcome us and our stims, sensory issues, communication differences in your public places.  Meet us where we are, don’t try to make us like you, the non-autistic person.  Most of us like who we are and we shouldn’t have to change to fit someone else’s opinion of how a human should be like.

So far there are some autism organizations calling it Autism Awareness and Acceptance Month.  Really?  If the organizations accepted us then they would listen to us.  The majority of us want acceptance.  We identify as autistic but they don’t listen to us when they continue to tell us we are with autism or we have autism.  Why aren’t at least half their board members autistics and I don’t mean just the autistic person who seems to pass as non-autistic some of the time.  I mean all autistics- speaking, non-speaking, high support, and everything in between.   These organizations make it look like they are listening to us when they add the ‘acceptance’ part but we know they aren’t, especially when they still keep the awareness part.  

So, Autism Awareness Month, I could take it or leave it.  It really has no meaning to me.  It is mainly a chance for organizations to say, look at us; see what we do.

photo reads Autism Acceptance in red font colour.

Sunday, 1 October 2017

Autism "Awareness' Month Canada

Right now, I am just re-posting an edited version of this blog post from 2014.  I am really hoping to get something current written soon, but is is one of my better pieces!  

It's Autism Awareness Month in Canada.  It's such a big thing (sarcasm) here that I forgot!  There is very little, to no mention of it in the news and on Facebook.
At this point we need more than awareness anyway.  We need acceptance.

The definition of awareness is having knowledge of something.

Yes, it is important but most people are 'aware' of autism.  They know it exists, but they don't truly know what it is. The way autism awareness campaigns are generally run, they portray autism as a tragedy.  It is a way to raise money for the organization running the campaign, especially that big well known organization A$ (they focus on the April awareness campaign it seems though).  Awareness involves talking about what is 'wrong' with us, our deficits, making us normal.  It is pointing out and getting rid of our differences, blending in with the crowd.  It makes it seem like it is not okay to be autistic.  It treats autism like a disease to be gotten rid of.  Awareness campaigns seem to focus on one part of the spectrum, making the public think every autistic is like that- a child who can't speak, constantly has meltdowns.....  It makes for good fundraising, usually for research (to 'cure' or prevent us).  That money can be put to much better use getting us the supports we need to have the best life each autistic is capable of living.  Awareness that autism exists is just a starting point.

What we really need is acceptance.  The definition of acceptance, in this instance, is favourable reception; approval; favour.

Acceptance is saying, it's okay to be autistic.  It's okay to be you.  It's not trying to separate autism out of the person.  It is impossible anyway.  It is part of our brain's wiring, it affects every part of us- our communication style, socialization style, sensory system, everything.  Taking away our autism is taking away a big part of us.  We would be completely different people.  Could you imagine changing your child or friend into someone you no longer know? 

Acceptance is knowing that autism is a disability in some areas and an advantage in other areas while supporting us in both if we need it.  It is saying, 'it's okay to be autistic'.  It is saying, 'how can we help you, what areas do you need support with?'.  Including us in everything to do with us.

Acceptance is autistics not feeling we have to be embarrassed by or have to try to stifle our stims and interests (some are very original!).  It is non-autistic people knowing and understanding that stimming may be one of our forms of emotional expression.  Some autistics flap, jump, squeal, or all three when they are happy.  A non-autistic person on the other hand, may smile and some may even cry when they are really happy (which to me makes no sense, but there is nothing wrong with crying when happy.  It is just the make up of some people!).  I flap when I am really anxious or frustrated.  Sometimes, I will flap, jump and squeal if especially frustrated.  For me, I don't flap when happy.  I don't get happy anyway!  I just am.  Maybe the emotions thing can be another blog (I have alexithymia).

Acceptance would mean me not having to be afraid to use AAC (augmentative and alternative communication) in talking to someone or a group.  It's people not thinking I'm faking or trying to pull something by using AAC, because I can talk most of the time.  It would mean that if I were to sing on stage at a recital (I'm taking lessons) that I could rock side to side while I do it or have a fidget and nobody would think that I'm "weird" or that it isn't proper- the way a performance should be.  It helps me and if it helps me and does no harm to anyone, should it really matter?

Acceptance is the world knowing that autistics have valuable contributions to make to society the same as any other human.  It is letting us speak for ourselves, however that needs to happen- verbally, signed, typed etc.

Accepting us means giving us the same rights and respect that you would to a non-autistic person.  It is knowing and seeing that we are different but just as capable.  We are all individuals after all.

We are not projects for someone to work on, we can be friends, and an autistic friend can be a truly loyal friend, who can keep your secrets.

Acceptance is observing an autistic person shopping while wearing ear plugs/muffs and sun glasses but thinking nothing of it.  Just seeing a fellow shopper.

Acceptance doesn't mean we don't have really rough days or need treatment for various issues.  It means meeting us where we are and supporting us through it.  Just being there for us even if it is just in the background to assist us if needed or just helping us wait it out and then not seeing us any differently when the bad time is over.  We have bad times like everyone else but ours may be a little messier!  Acceptance is loving us no matter what for our whole person, just as you would love your non-autistic loved one.

I don't generally feel accepted in most places I go.  I try to hide most of my true self.  I want to feel that I can openly stim and not just in socially appropriate ways (chewing my pen, twirling my hair).  I want to be able to flap when I am upset in public or anywhere that I am.  I want to be me and not have to hide.  Very gradually that is happening but I'm not sure that I will ever be able to openly act the way I do when I am alone.  I have had to hide for so long that I don't do most of my stims, except for verbal ones, in front of my immediate family even.

It is time for Autism Acceptance to be what everyone is striving for!  We could do so much more with support than with people constantly trying to change our neurology.