Thursday, 31 March 2016

Autism Acceptance Month Post 1- Autistic Awesomeness

It’s Autism Awareness Acceptance Month.  Many autistic people dread this time of year.  It is full of stereotypes and fear-mongering about autism and autistic people.  Light It Up Blue was started by the hated organization, Autism Speaks to bring awareness that autism affects mostly boys (stereotypically along with the stereotypical colour blue for boys).  From their site: "What does the color blue have to do with the autism spectrum? The answer is that Autism Spectrum Disorders are almost 5 times more common among boys (1 in 54) than among girls (1 in 252). So, the color blue represents the boys diagnosed with autism."  Not only do they hate autistic people but they also discriminate against female autistics.   Doesn’t autism affect girls?  Of course it does, but I think one of the big reasons it is under diagnosed in girls/women is that many doctors and other people believe that it is only boys who are autistic and there are also different social expectations of girls.  The number of girls/women being diagnosed seems to be catching up though as more people gain knowledge and understanding.

Is an awareness day really necessary?  I don’t think so, most people are aware that autism exists and that has done nothing to help us.  It has not brought more supports or understanding.  Acceptance Day/Month is still necessary, although one day, if we are ever fully accepted and included, then even that will not be needed, other than to acknowledge the struggles of those in past generations who worked for change to make acceptance a thing.  

How do we get to a place of true acceptance of all autistic people?  It is hard for some parents to hear about acceptance.  Many of them think that it is only speaking adults who need little support who are calling for this.  That is not the case.  There are autistic people ranging from completely non-speaking individuals who need full time support to speaking individuals who need much less support calling for this.  Non-speaking does not mean not able to communicate.  There are many forms of AAC, so if an autistic person in your life needs a communication aid, keep searching until you can find what works for them.  Needing full support does not mean someone is incapable of accomplishing things.  So it is not just those of us who are able to speak (in my case part-time) and need less support asking for acceptance.  Amy Sequenzia is a non-speaking, multiply disabled autistic activist and she has written about acceptance here and here.  
To me, autistic person, means anyone who is autistic.  Not exclusively those who speak or don’t speak or those who need little support or a lot.  Autistic includes all of us with the diagnosis. 
Why should autistic people be accepted?  Why not?  We are just as human as the next person and deserve no more or no less than them.  Wouldn't it be nice to just be able to be yourself without constantly putting on an act (if you even have that ability)?  To not have to pretend to be someone else just so you can be accepted?  What is wrong with being different?  Different is good.  Different makes things interesting.  The world would be very boring if we were all the same.  I think there would be a lot less anxiety and depression in the autistic population if we could be ourselves and be accepted for who we are without non-autistic people telling us we are always doing things wrong.

They have sensory friendly days at movie theatres, but have you ever noticed that it is almost always a kids movie?  What about having all of the movies sensory friendly, once or twice a week so all autistic people can attend and we can choose a movie we want to see.  How about not finding it unusual to see someone shopping with sunglasses and noise blocking earmuffs?  What about encouraging all forms of communication?  And what about stimming?  Sometimes autistics do it for fun, for relaxation, and sometimes for calming themselves.  Why can’t these things be accepted and not feared or seen as ‘abnormal’.  There must also be some non-autistic adults who just want to be free to jump up and down, spin, or flap.  Of course that is not ‘adult-like’, not ‘normal’ (sarcasm) so it must be stamped out of autistic people.  But why?  Who is it harming?  If no one is being harmed then let it be.  Stimming is healthy and fun and can help keep someone calmer when they are stressed.

Autism Acceptance Month is about celebrating autistic awesomeness.  It is not about autism awareness and how we are such a burden and shouldn’t exist.  It is about celebrating who we are and our about autistic pride.  Let us be the people we were born to be.
photo says celebrate autistic awesomeness (with rainbow colours)

I am going to add a video of me being slightly more myself.  Not hiding as much of my 'autisticness'.  I don't usually intentionally hide the way I am but that is the way I was brought up--Hide the differences. In the video, I am practicing singing the song Top of the World by the Carpenters.  There is karaoke music that I use.  I will post the lyrics below the video because it is not captioned.  

Carpenters – Top Of The World Lyrics

Such a feeling is coming over me
There is wonder in 'most everything I see
Not a cloud in the sky, got the sun in my eyes
And I won't be surprised if it's a dream

Everything I want the world to be
Is now coming true especially for me
And the reason is clear, it's because you are here
You're the nearest thing to heaven that I've seen

I'm on the top of the world looking down on creation
And the only explanation I can find
Is the love that I've found ever since you've been around
Your love's put me at the top of the world

Something in the wind has learned my name
And it's telling me that things are not the same
In the leaves on the trees and the touch of the breeze
There's a pleasing sense of happiness for me

There is only one wish on my mind
When this day is through I hope that I will find
That tomorrow will be just the same for you and me
All I need will be mine if you are here

I'm on the top of the world looking down on creation
And the only explanation I can find
Is the love that I've found ever since you've been around
Your love's put me at the top of the world

I'm on the top of the world looking down on creation
And the only explanation I can find
Is the love that I've found ever since you've been around
Your love's put me at the top of the world
Top Of The World lyrics © Universal Music Publishing Group

Friday, 4 March 2016

Catch Up Part 2: PTSD. It's that time of year.

I’ve finally written part 2 of my catch up posts.  I don’t know if I have ever mentioned that I first hand write my posts and then type them.  For some reason I can’t usually just type it directly on the computer.  

With all that was going on with Micah’s arm, I completely forgot that November to March/April is Micah’s worst time for her PTSD because that is when the ‘incident’ happened in grade 6.  I was thinking her main anxiety was over not being in school to get the proper instruction in her courses.  It didn’t sink in to either of us until just after Christmas, when she was no longer able to speak.  She had two disappointments in one day on December 27.  Not speaking due to anxiety is common with autistic people who can usually speak.  To communicate, Micah used gestures, mouthed words, and typed.  Before school started in January, I emailed certain staff who were involved with her and let them know that Micah could not speak and that there were alternative communication options.  The staff were supportive.  It is interesting because if I had tried to put her in school as a non-speaking autistic student before the staff knew her, I wonder if she would have gotten the same education.  Emma, from Emma's Hope Book posted this around the time I was thinking about that.  Micah also has three great friends in her ASD class who just seem to go with the flow of whatever is going on with her.  

Since the grade 6 incident and being diagnosed with PTSD, this is the first time Micah has felt like cutting herself. Not talking was just a regular autistic thing to me but wanting to cut is a scary thing.  You don’t know how far it will go.  It showed me how much worse her anxiety is this year.  Part of it is the trauma of injuring her arm, part of it is that she was to start math in the second semester, and part of it is the yearly flashbacks of the problems that happened at this time 4 years ago.  Math was a big issue in grade 6.  Micah was failing and she didn’t get the support she needed so now she is stuck there (in the deep of her mind anyway).  As the days and weeks went on, Micah’s voice gradually came back and she is currently speaking at full volume.    

During that really dark time, mainly in January, Micah started up her blog again and wrote a couple of posts.  One was titled, Rock Bottom and the other was titled, It's Never What You're ExpectingIt was good for her to be able to do that.   She was finally able to write about what went on (some of the timeline was a bit mixed up but all of the facts are there).  I blogged about it almost four years ago, also.

We found out that our local abuse centre is now starting to offer groups for types of abuse other than sexual.  They are going to be starting the groups in the fall, so I asked Micah if she was interested.  She was.  We went to the intake where we were told that they couldn’t complete the intake because the abuse was not reported.  I explained that at first we didn’t even realize that what had happened was abuse and second of all the teacher was no longer living.  They told us that it still had to be reported for Micah to join any programs.  It seems wrong than an abuse program would refuse support just because there is no report.  The incident happened 4 years ago and the teacher involved is no longer around.  Reporting isn’t going to change things, although it would be nice if the school board was paying the for all of the therapy.  As of yesterday, the reporting was complete and we are waiting to hear back about programs.  

Through all of this, Micah completed first semester on the Honour Roll.  After missing over a month of school and her PTSD being really bad, she managed to still get high 80’s to 90’s.  She had some really rough days at school but the staff were understanding and supportive.  Her high school has been an amazing school for her.  I had only ever heard bad things about it and didn’t really want Micah to go there.  They don’t have a great selection of electives but it has been worth it.
My anxiety really feeds off everything going on around me, so it has been worse as usual but I am used to it.  I have never had the benefit of therapy.  Micah is doing well with therapy, even with the setbacks.  In the past, she couldn’t go to school.  This time even on her worst days, she was there, even if she couldn’t go to class.  She had an amazing vice principal who was her guidance counselor last year.  She is the first educator whom Micah has felt completely safe and comfortable with, so Micah went to her when things got really bad during the day.  Piano has been very calming for her as well.   The VP moved to another school so Micah doesn’t have her safe person now but she is getting stronger and is becoming better able to trust certain other people more.  She is advocating a bit more for herself and her needs.  

I feel very proud that Micah is my daughter.  She is disabled and able (does that make sense?  I know what I am trying to say but maybe others won’t).  She is doing so well even when she has bad times.  Each year she gets stronger and becomes more of an advocate.  Ever since she was a baby, she has known what she wants/needs and she makes sure she finds a way to get it.  When I grow up I wish I could be like her!