Canadian Autism 'Awareness' Month, October 2020 (an edited version of a post from 2014)

 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 that we are long past.

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.  That is impossible anyway.  Autism 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 allistic (not 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.  An allistic 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 experience happy anyway- I just am (I also 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 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.

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 support 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 some 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.

 

Photo says, Nothing About Us Without Us

 

 

Update

 I know I haven't written in a very long time.  

I am currently going through old posts and updating parts of them.  Once that is done, maybe I will have the ability to write some new posts.  

I am struggling with time and executive functioning issues. Also, never knowing what to write about.  I have a book that will never be published but that is okay.  My writing isn't that interesting anyway!

Current (summer 2020) picture of me with a horse(Troy) who is missing an eye.

My Experience with ABA

When my child was diagnosed autistic at four and half years old, the doctors recommended going on the IBI (intensive ABA) waitlist and calling Kerry’s Place Autism Services.  I was diagnosed several months later.

We knew someone who was training in ABA and hired her for a couple of hours per week.  We were taught to force M to do things they didn’t want to do, even if we had to physically make them.  For the most part we did not do that.  There was the occasional time where we would pick M up and put them in the car if we were supposed to be going somewhere.   Or in moment of weakness, I would try to make M sit in a chair.  It didn’t go well and should not have been done.  We were told that M was attention seeking when they were crying, climbing on us, and generally melting down.  I did not fully believe what we were told but I was brought up being told to do as I was told so I listen to those who are authority figures.  We were told to take away all of M’s special toys so that they could be used later as rewards.  This backfired on the therapist because M just did nothing and sat on the couch depressed and didn’t play with anything else.  We gave the toys back.  It was not fair to take them away like that. 

We were told to ignore the ‘attention seeking’ which made the meltdowns worse.  We didn’t know at the time that they were happening for a reason even if we didn’t know what it was.  

During our four year wait to receive IBI, I learned some more about autism and must have found a few bits written by autistic people online (there was very little back then).  I learned why I struggle with eye contact- in my case probably sensory.  We never forced M to make eye contact and when they started ABA, we made sure it was not done.  We received direct funding, so we hired our own team and M did 1.5 years (20 hours a week) of IBI.  M was not forced to sit still with their hands on the table but there were many programs, including compliance.

I was taking my Autism and Behavioural Science Graduate Certificate on line through Seneca.  I figured it would be a good way to learn about autism and support my child.  It was a course not only for ABA, but also social stories and visuals. In my placement and in various other learning situations I learned hand over hand- which is horrible for sensory issues and for making the individual feel powerless.  I learned negative reinforcement-if a child in the centre threw cards etc. on the floor, the command to pick them up was repeated over and over, along with physical prompts (while the child was melting down) until the child did what was asked.  I also observed certain children carrying a bucket of ice.  I never asked staff what it was for but assumed it would be used for hitting and the like.  Lemon juice in the mouth was for spitting etc.   So yes, punishments still happen in ABA/IBI.  

Using the negative reinforcement of the repeated command on my child made their anxiety so much worse and meltdowns more violent, as did the extinction (planned ignoring).

Candy reinforcers (rewards) for doing programs is bad especially in families where food issues run through generations.   Our young adult has been ‘addicted’ to candy since the IBI and didn’t really eat it before then.  They were also used to getting a reward for doing things and this took many years to cut out after IBI.

Through time, I became more aware of other autistics especially after I got Facebook and found community.  I learned from them better ways than what we were told from ‘professionals’.  I learned to not ignore meltdowns/tantrums even though every parent is told to do that.  If they are even just having a tantrum, they’re in need of support, not necessarily to get what they want but to be heard, to explain why they can’t have it, also to understand their big feelings.

 

My son was aggressive and as they got older, it got scary but I followed what other autistics suggested and when my son melted down, I would give short replies- “I understand you want …..”, ” yes, I am listening” etc.  Instead of staying behind a closed door, I blocked blows by turning my body.  It took a while but we no longer have those incidents.  

It always felt wrong to ignore when my son was very troubled but we followed the so called experts.  Now we follow the true experts.  

Verbal behavior tried to change the way my child communicated.  We would all know that my son wanted the juice on the table but if they said they were thirsty, the senior therapist said not to give it to them until it was directly asked for (with prompting at first).  Does it really matter how the point is gotten across as long as it has been?  There were lots of programs for that and for asking questions.  M did not usually ask, ‘why’, but got the information in other ways if they really wanted it.  Why is faster but does the method matter if you get what you need?

After getting my Graduate certificate, I worked for M’s therapist with a young 2/3 year old boy.  One program his parents wanted run, was for him to look at them when his name was called.  I had a favourite thing, called his name and started with physical prompts to turn his face to look at me, then gave him the thing.  It is a silly program.  I was taught to do the same thing with my dog.  It is not something that should be done with people.  Talk to him and assume he is listening even if he is not looking at you.

That job lasted a couple of months and I was glad when it was over.  It would have been better to interact with him in his chosen ways.  

Another ABA therapist job that I had was with a young girl.  I told the parents that I am autistic.  A big part of her program was eye contact, which was torture for me and probably for her.  She was funny though.  When I asked for eye contact, she would open her eyes wide, lean forward and look me in the eyes.  It was hard not to laugh.  The whole program was a waste of time.  I was told they couldn’t afford to keep because she was starting on biomedical but I think they actually just didn’t want me after viewing a taped session.   

I never practiced ABA again after those two.  I couldn’t make myself do that to other autistic kids.  I can’t do things like eye contact or in many cases even speak to people, so how can I force a child to do it, especially when it comes at the expense of mental health.  I didn’t have ABA as a child but was brought up similarly.  Being forced to comply has not helped me at all in my life.  It has been a partial cause of my anxiety and dysthymic depression.  I have trouble saying no and have been molested and sexually assaulted.  ABA has been proven to cause PTSD and parents who say their kids ABA doesn’t try to fix them and allows stims (likely only certain ones and at certain times) aren’t doing true ABA and it is just called that to get funding.

Autism Acceptance Day/Month 2018

 Many people know that April is Autism ‘Awareness’ Month (or Bewareness month as some autistic people call it).  The specific day set aside by the United Nations for World Autism Awareness Day is April 2.  Most people who follow autistic bloggers and/or are friends with autistic people know that most of us don’t like Autism Awareness Month.  Side note- I don’t presume to talk for every autistic person.  My opinions are mine and based on what I see in the communities.

Autism ‘Awareness’ Month is a time where organizations and groups, especially the big one A$, fund raise.  A big part of the way that they fund raise is by scaring people; telling the public that we are an epidemic; turning us into a list of symptoms; by saying how hard it is for our families and caregivers to take care of us.  

In 2011, Paula Durbin Westby started Autism Acceptance Month (Click here for some background) as a response to Autism ‘Awareness’ Month.  It is a day/month about us as opposed to non-autistic caregivers and parents.  We can talk about our autism, both the good and the bad parts, and celebrate it and each other.  It is a way of respecting autistic people and our contributions as humans. 

The past couple of years, I’ve noticed that organizations and groups are starting to refer to the day/month as Autism Awareness and Acceptance Day or Month, or even World Autism Acceptance Day.  They are starting to throw around words like neurodiversity, neurodivergent, and acceptance but they are just empty, meaningless words in these cases.  There is no action or follow through on their part.  I still see the same things coming out of these organizations and groups.  They have just taken our words and are using them to make it appear that they support and respect us.  Nothing has changed, except for the new words on banners and pages.  They still talk about us as symptoms and how we need to be fixed with therapies, like ABA.  We are still excluded. They hold conferences and presentations which do not include us even though they are about us.  Just before I wrote this post, I saw this come up on my Facebook Newsfeed,  "Join us tonight at 7:00 pm for our free first responders webinar. Hear perspectives of parents, police officers, and Autism Ontario professionals, with information and resources along with examples of what is working across our province to support people with autism and an opportunity to ask questions and hold a discussion.  It says nothing about actually autistic people, just everyone else.  We are not included in discussing supports for us!

 If we do get included, it is only autistic people who see things exactly the way the organization does (mainly because they don’t know that there is a whole autistic community out there and they can just be themselves instead of having to mask who they really are.  That is how they were brought up and the message in the media).  Also, if we are included, we are talked over and not listened to anyway.  I don’t see acceptance in that.  Where is our input?  If it is about us, then our input is the most important piece. 

If non-autistic people were listening to autistic people, then they would not just take our words to use.  They would not need their ‘awareness’ campaigns to know we exist.  They already know we exist, so do they really need to remind each other every year?  If they were truly listening, there would be action.  There would be change in how we are treated.  We would be listened to.  We would be respected and treated as human.  We would be accepted.  

photo says accept

Disability Day of Mourning 2018

This year I participated in my first Disability Day of Mourning.  It is a day to remember the disabled children and adults who were murdered by their parents or caregivers.  In the past, I have watched videos and read blog posts online for the vigils but have never been in person.  Mainly because there has never been one in my area.  This year, the group that I am a co-founder of, A4A (click here for link) was holding a vigil in Toronto and I really wanted to be a part of it and to help out. 

It wasn’t going to work out for various reasons though, so I decided to hold a vigil in my town.  My first job was to find a room, because being Ontario, it is cold at this time of year and potentially snowy or rainy.  I posted on my Facebook page and in local groups to see if anyone knew of a cheap or free accessible room that we could use.  I had a couple of offers and went with the one a FB friend donated the use of.  He uses a wheelchair so he made sure that the room was accessible.

It was only three weeks before the vigil and I had no idea what I was doing.  The great thing is that ASAN (click here for link) has you sign up your site and they then send you all of the material you need to hold a DDOM vigil.  Close to the day, they send out the list of names to be read and also a recording of the names being read.  They do it that way because, sadly, there are usually more names to be added. 

On the day of the vigil I set up a project board on which I had taped the seven full pages of names (about 950 people).  In the front opening, on the table, I placed several battery-operated candles. 

There were a total of five of us in attendance.  I read something I wrote (shared below); I read one of the readings that ASAN suggested- Ari Ne’eman’s On Our Backs We Will Carry Them; we listened to a recording of all of the names being read and then had a moment of silence; after that we had a final reading which was also suggested by ASAN- You Get Proud By Practicing by Laura Hershey.

My thoughts on DDOM.  It is an important day to remember those disabled people who were murdered by their parents and caregivers.  It is a day to think about the way disabled people are treated.  Why are our lives less important than non-disabled lives?  Why are we considered burdens and worthless?  The way these murders are treated in the media and by parents and caregivers is one of the reasons.  The story becomes all about the murderer and how bad their lives were due to taking care of a disabled person.  There are few consequences for murder of disabled people compared to the murder of non-disabled people.  It seems like it is an acceptable thing to do.  There are reports of lack of supports, yet many of the murderers actually turned down supports.  Even if supports are lacking, there are always alternatives to murder.  The focus in the media needs to be on the victims and not the murderers.

Something I don’t understand with the vigils is that why are they so poorly attended.  I know not everyone can get out but there are many who can and what about the many people who say they are allies to disabled people.  Where are they when this day comes around? 

One day, maybe the DDOM will be a remembrance of those lost but without any new names being added.  That is something that many disabled activists are working for.  Here is a link to ASAN’s anti-filicide toolkit.

photo of display of names with several candles in front

The following is the speech I wrote for the vigil:

Before we start, I want to thank Dave and Joe for securing and donating the use of this room for our vigil.

Hello, my name is Mandy Klein and I am a co-founder of A4A Ontario.  I am autistic and physically disabled.  Today, I will speak a bit and follow it by with a reading.  I will then play a recording of someone saying the names of the disabled people murdered by their parents or caregivers.  We will follow this by a moment of silence and another reading.

Disabled people are as human as non-disabled people, but we are not treated as such.  We are looked down on, treated like children or even animals, and considered burdens.  We are abused and tortured in the name of therapy and teaching.  We are denied equal access to schooling, recreation, and jobs. 

When disabled people are murdered by their parents or caregivers, it is the murderers who are supported and told what they did is understandable.  This does not happen when non-disabled people are killed by their parents or caregivers.  Those murderers are vilified.

We are here today to remember those who were murdered by their parents or caregivers.  Murdered by people who should have protected and taken care of them.  We are also here to stand up and say that is not acceptable to murder someone because they are disabled.  Caregivers and parents who murder disabled people must be charged and sentenced the same as caregivers and parents who murder non-disabled people.