World Autism Day -- Autism and My Story

Light it up blue ---  World Autism Awareness Day

I was going to write the symptoms here -- to try and spread awareness.. instead i want to tell you a story.. about me and the way Autism has touched my life.

In 1991 I meet some pretty fantastic Adults -- all of them profoundly touched by Autism. They were all moving "back" into the community after having lived anywhere from 10 to 20 years in Ontario institutions for the developmentally delayed. I was "fresh",  2 weeks out of College with my diploma in hand - though by this time I had worked for 6 years with people with developmental disabilities. I was 19 years old, full of engergy and ready to make a difference in the world. - it was not until years later I realized, I wasn't making a difference in the world -- I was making a connection with amazing people who would be part of who I am for the rest of my life -- I am most greatful for the strength , humility and honesty the people who I have walked alongside in this life with -  have helped me find.

I started working full time for a small but growing organziation. Then I met him -- a six foot 200 plus pound early 20's guy -- who stole my heart -- with the words --"Touch your ear" - I had no way to know that this great big guy, who could not put many sentences together and who rocked back and forth, and would ask for "hugs" would so profoundly change my life. Not to mention he could make a mean dish of rice and beans, and chicken with a side of fruit salad - all by himself.

I then met a wonderful , loud, chocolate loving woman who could scream in a pitch no one would every want to hear -- but who when she liked you -- would melt your heart -- I even tried to learn small phrases in German just so I could communicate with her in her first language.. I would spend the next ten years working with this woman in her group home, and day treament program -- first as her primairy worker , then as the supervisor of the group home, then as a  manager of program development for her day treatment centre. Rational detachment to hell - she was my friend - and all the fun we had over the years , all the tears , all the frustrations all of it - even the hard stuff -- I would never change a single moment. From our first shopping trip to get rid of those horrible polyester pants ( no one under the age of 50 should have been wearing those!) to getting past her 8 foot no enter zone. I made this a mission - to be allowed within her eight foot circle of space - it took me six months to put my foot within that invisable circle. In the end when I said good bye and told her the truth - I wasn't going to see her again - she smelled my hair ( this was a sign of affection from her, took the candy dish off my desk and a picture of me and left my office)

I would spend from 19 to 25 working as a direct care worker with a group of adults who shared only really one thing in common when they first met - they all at some point had been diagnosised with Autism. Each of these adults also had an additional mental health issue as well.

I learned so much from them - this blog would be a small novel -- I learned about dignity -- and how to make sure we honour that in people who require intensive support. I learned about choice -- and the rights and responsibilities we all have and must teach to those who don't know they have choice. I learned about vulnerablity - and how far I will go to protect someone who cannot speak for themselves -- but who has so much to share with the world. -- I also learned how to say goodbye -- after 11 years working with these fantastic people - I told each of them one by one the truth - they had all meant so much to me -- but at 29 years old and having spent so much time with them I wanted to work with children and there was this new initative I was hearing about .. so I left my management job , took a huge pay cut ( I don't regret a single moment) and I dived in -- to the professional side of Autism - head first.

The first 11 years of my career - I learned  with my heart. The last 10 I have spend learning with my mind, body and soul. I thought  I knew what Autism looked like, I thought I knew it all -- I knew nothing. I had only glimpsed into the world of families , and I had only seen the adult side of profound ASD. I had no clue how many faces Autism had..

Now 10 years after joining the  Autism only professional world - working one on one doing treatment - was tough , but I learned more in a year then I had in ten about the brain's ability to learn. I learned the importance of early intensive intervention, I learned that each child may share the same "symptoms" but not a single one of them is the same - they are all SO different. I learned some would excel and some would not.

Autism taught me what tired meant - when I looked into the eyes of a mother whose child hadn't slept in 4 months during the night. I saw what life might have been like for the woman I knew once upon a time in the eyes of a little girl. I cried for what I wish I had known about strategies, visual supports and every other technique I learned about. I learned how different the same word "Autism" meant to each parent.

I learned about denial as coping, I learned about fighting to cope. I learned about how two people who love each other so much -- can struggle together and apart. I learned what love could make you do for someone else - how much  so many parents will give up.. to hear their child's voice. I learned how angry I can get at those who try and sell a "cure" where none yet exisit. I learned that after 21 years full time -- I still have so much to learn.

Autism we know so much - yet so very little.  I have known over 500 people across the lifespan from 18 months to 65 with Autism. My life is better because of it. 

You can learn only so much from the books, the internet , even the story's your read.. Get involved -- money for research is fine.. but how about becoming respite for someone ? Because you know what -- I figure you ask 6 people and someone you know -- knows someone with Autism.

I know over 500 people. It started 21 years ago with just 2

To every  person I have known, every family member, every other staff member I have ever worked with -- Thank you - you are why I do what I do every single day - and I would never change one moment.