Saturday, 28 March 2015

Autism Acceptance Day 2015 #AutismAcceptanceDay5



That time of year is upon us again- ‘autism awareness day’.

Awareness of autism just allows everyone to know it exists.  Generally, most campaigns talk about how horrible it is to have autism and what a burden it is to the family.  There is talk of tolerance, cure, and prevention.  At this point, I think most people are aware autism exists.  They may have no clue what autism really is, but they know it is out there and dread it.

I choose to participate in Autism Acceptance Day.  Acceptance does not mean just tolerating our presence in society.  It means actively including us as you would any other person.  We are equals. We are just as human and valuable as any other person is.  It means letting us be who we are, letting us do what we need to do in order to be part of a society that is so different from us.  It means including us, supporting us, and asking us what we need in order to accomplish this.   

If the autistic person is non-verbal, then keep trying until you find a way for them to get their words out- it may be RPM (Rapid Prompting Method), FC(Facilitated Communication), or something that you both come up with, but all people deserve to be heard whether it is verbally or using AAC (Augmentative and Alternative Communication).  Accepting means not stopping our stims because you think they are ‘weird’.  Neurotypical people also have them and don’t even realize it.  Ours are just different sometimes.  Some stims help us self-regulate and some can just be fun, like saying the word alpaca or chupacabra in multiple different ways- fun!  

Part of acceptance is inclusion in ways that make us feel comfortable and safe.  We may turn down invitations to do things many times.  Please, don’t give up on inviting us.  Ask what we need to feel safe doing what you are inviting us to do.  We may not know what we need right away, but do not give up- one day we may surprise you and say yes.  I have been invited to do things many times and usually turn down the invitation. Sometimes, I just have no interest but not usually.  I don’t know if people are aware that it is mainly due to my autism (other autistic people may have different reasons).  They don’t think to ask how to support me to do what they are inviting me to do.  It’s not like I will ask for help either.  Partly because I can’t (maybe I don’t know what I need), partly I don’t trust the person to follow through on their offer to help- not necessarily their fault that they don’t realize how much support I need.  Sometimes I will be with person and someone else interesting comes along and I get left on my own.  It has happened multiple times so I don’t trust or expect people to help me.  It is a lot to ask of someone to shadow me the whole time, so I don’t.  In my case, I need help with dealing with the sensory, communication, and basic skills areas of what we would be doing, otherwise I turn into a big ball of anxiety.  Sometimes, I will say an automatic yes to an invitation and then once I’ve thought about it more, I back out.  It isn't only my autism that stops me from accepting invitations.  I also have co-morbid severe generalized and social anxieties, so they definitely don't help me any.  My anxiety becomes too much.

If we refuse invitations, they stop coming.  I know it can be frustrating to keep inviting someone but unless they explicitly say to stop inviting, then don’t.  One day we will accept- what if the next time you were going to invite us, we were to think that we were ready to participate?  That scenario wouldn’t happen because you have given up on us already.  Another reason we may not participate is that we don’t know all of the steps or skills involved in whatever it is you are asking us to do.  Ask us if we don’t want to do what we are invited to do or if we are anxious and/or don’t know what is expected.  If the problem is that we don’t know what to expect, then take us through everything step by step, not just things you think are important, I mean everything!  Take us through verbally and/or written, depending on what is best for the individual to whom you are talking.  Every step from the moment of leaving the house- or even before, sometimes you are expected to look a certain way to go somewhere- that is an area where we may need to be accommodated, we can’t necessarily look the expected way but can manage something close but comfortable for us.  

The following scenario is something that would be true for me but not necessarily so for another autistic person.  Say the invitation is for me to go for lunch with friends or coworkers (I usually invite people to my house in order to avoid the stress of going out). I want to go but there are several things holding me back and I say no.  An accepting person whom I trust could ask me if it is because I am not interested or if I want to go but can’t.  The person inviting could ask each question in such a way that the autistic person only has to say yes or no and not have to go into sentences that they may not be able to form at that moment.  I know that that is what I would need in that case.  Say I said yes to a question of whether I wanted to go but can’t.  You could try asking why, but not all of us can just tell you due to communication issues and/or anxiety (we are used to being made fun of or a multitude of other reasons).  Many people treat us like we are ‘just being silly’-yes, that has been said to me many times.  You could start by thinking about what it would be like for an autistic to go to a restaurant.  There are sensory issues for one thing.  You could list all of the ones you can think of and we can say yes or no as to whether we have a problem with that and then brainstorm a solution to each one.  For example, if we say yes to it is too loud, you could suggest earplugs, earmuffs, and alternative seating and that may help us.  Continue through all of the senses this way.  Next, you could talk about the skills area.  Some of us, (me for sure!) also struggle in this area.  How is billing done- group bill and splitting it is definitely harder or, individual billing which is easier?  Who pays the tip?  Finding the bathroom.  So many things that allistic people just do and some of us autistics really struggle with and get huge anxiety over.  I will go and eat in a restaurant with my husband and daughter because he takes care of everything and I don’t have to worry about it.  I don’t go and eat in a restaurant with just my daughter or anyone else.  Going out is a big scary social issue for me because there are so many variables involved.  Accepting us means supporting us as needed so we can just go out and do activities with you. 

Most autistics stim, although some have been taught to only do it in ‘socially appropriate’ ways or to hide it or to not do it at all (I’m sure it comes out somehow though, especially through anxiety).   Is there really any harm in someone hand flapping in public?  What about eye contact?  In North America, it is expected and even forced in some cases, but it is considered rude in other cultures.  Not making eye contact does not make us bad people.  I am better at making eye contact as I get to know a person and if I trust them, otherwise there is little to no eye contact.   

Acceptance is just seeing these issues as an everyday part of living in society where everyone has differences.

Another problem with autism awareness is that Autism Speaks has pretty much taken it over.  It is just another big promotional/fundraising day for them.  They started the Light it Up Blue campaign.  According to A$, "World Autism Awareness Day(WAAD), celebrated each year on April 2, was adopted by the United Nations in 2007 to shine a bright light on autism as a growing global health crisis".  After looking up A$ autism awareness day, I went to the UN website for World Autism Awareness DayI didn't read anything about it being a 'growing global health crisis'.  It does have a lot of medicalizing terminology and says autistics "can bring significant economic hardships to families".  We are not a health crisis or an economic burden.  Autism is not a health issue.  It is a neurological difference and disability.  

To sum it up, we do not need more awareness.  We need acceptance and respect for who we are and what we can achieve.  We are just as much a part of society as anyone else.  We are valuable, hardworking, contributing members and need to be allowed the dignity to be the people we are meant to be, not what someone else wants us to be, and certainly not cured or prevented.

Light skinned woman with brown hair and glasses holding a sign which says Acceptance Not A Cure.  Photo credit: Micah Klein