Saturday 22 February 2014

In My Words



If you saw a flyer, like I did last year, for an autism organization promoting an event for World Autism Awareness Day and they called it “In Their Words”, what would you think?

Would you think, like I did, that it was great that an autism organization was having autistic people speak about their autism, needed supports, how they are perceived in society etc.?   I thought it was amazing that finally they were getting it- that even non-verbal autistics have a voice and they, along with verbal autistics, have much to say verbally or using alternative communication. 

I was very wrong and seriously disappointed.  I read the description and discovered “their words” were not autistic words, but "neurotypical words" spoken by authors, parents, and researchers.  All of them had some relation to autism but they were not (or not openly) autistic.

I wrote the following comment on the organization’s Facebook post:  “I was excited to see the title “In Their Words” and thought it would be autistics speaking.  I was disappointed to see that it is not.”

Their response to me: “Hi Mandy, the event features individuals who support autism and write/speak/do work in the field and will speak as to why ‘in their words’.  It was designed to create more awareness and raise funds.  Stay tuned, as we are hoping to do an art show in the fall, featuring artists on the spectrum!”

Unless I misunderstood the title of the event (I do also have a learning disability) then I would think most people would assume, as I did that “In Their Words” meant the words of autistics.

I am the only one who commented on this.  In Canada, we don’t seem to have a group of vocal autistic advocates like they do in the U.S.  I am sure there must be a few though!  I believe that if an event was advertised on Facebook like this in the States, advocates might have posted on their Facebook pages and asked other people to go and comment on the Facebook post.    

A couple of weeks ago, I got the post on my Newsfeed from the organization.  This year they slightly changed the message.   I am paraphrasing the message here: they are celebrating World Autism Awareness Day with “In Their Words”: An evening supporting autism that features celebrated individuals from the field of autism.  

At least it is clearer this year that it is not likely to have autistic individuals speaking “In Their Words”.  I looked at the flyer and it is definitely not autistics (or not openly) speaking.  One of the speakers is the father of a well know autistic.  

I haven’t commented on it this year.  I don’t even know what to say.  I guess this blog is it.  It would just be nice if they either completely change the name or have autistic speakers.  




Tuesday 11 February 2014

Another Week and No Post

I still haven't written my next post but I have an idea and have to try and get it down on paper.  Yes, I do hand write it first, then type it in Word, and then cut it and paste it here!  I guess because I grew up handwriting assignments, I can't seem to get the words out on the computer the same way.
While you are waiting, here is Micah's latest post:  http://battleofagirlwithptsd.blogspot.ca/2014/02/winter-week.html
It has been an up and down week and very busy.  I can't manage to get things done because the schedule keeps getting thrown off.  It really increases my anxiety when that happens.  I'm supposed to start my allergy shots for trees this month but it is already half way through the month and I haven't managed to make the call to our doctor's office to see if they can do them.  I dread the phone calls and have to wait for the perfect day (whatever that is).
Hopefully, I can start my next post sometime this week.

Tuesday 4 February 2014

Rough Week

Micah has written a second blog post about her PTSD, http://battleofagirlwithptsd.blogspot.ca/2014/02/another-bad-week.html .  As she says, it was a rough week for her.  She did have her first session of art therapy but couldn't get into her music therapy.  We have decided to take a break from it for a bit and hopefully she will be able to go back soon.
Home instruction hasn't started yet but should be soon.
We are working on figuring out high school courses now and have no idea how anything works.  It will be hard to do a long slow transition when there is no actual class or teacher yet.