Autism is Not Cancer.

 

I don’t often ban people from Ottawa Autism Connection, but when I do, it’s pretty obvious why. This time, maybe not so much, so I want to explain.

autismpride

Today is Father’s Day.

When I was 2, my mom loaded up her car and packed me up and drove two hours to her parent’s house. It was her wedding anniversary. She left my dad without even a note. I didn’t see my dad again until I was 22.

My dad became a mentor over the last decade we’ve been back in touch, but he has his own life. He also has stage-4 cancer.

So as you can imagine, Father’s Day is … complicated.

To suggest, as someone did on Ottawa Autism Connection’s Facebook page that cancer has anything to do with autism is insulting to everyone.

My experiences with my sister being born a micro-preemie, my neighbor in the delivery room having to deliver her still-born, and my own son having a heart murmur at birth, have all taught me that autism is a very low priority to a sick baby.

There are parents who are dealing with loss. They didn’t deserve it, and some would happily “live with” autism. Does that diminish the real grief and sense of loss that we experience initially? Absolutely not. I spoke with Bereaved Families in passing a few years ago, because I was in the same building as their offices, and their representative said the process is the same, it’s just a different type of loss. It’s an abstract loss. An ultrasound technician implied that my second child was female. He wasn’t. He was born male. What’s odd is my husband and I still have the baby clothes for the non-existent daughter. In fact, we’ve moved twice with the bin of clothes. I mentioned this to Bereaved Families, and told her I felt ridiculous and guilty (because others have real loss, and mine is abstract), but she was warm and empathetic: this is normal.

Your sense of loss is normal. Your anger is normal, but misdirected.

“Should we have a cancer pride day?” Well, we already do. Breast cancer, pancreatic cancer, prostate cancer … all of these have fundraising celebrations. I think we need to clarify what is meant by “Pride”. Pride in overcoming challenges. Pride in accepting ourselves, others, and our situations. Pride in the community for changing its point of view towards us. Pride in societal progress. Pride in scientific progress.

See, a long time ago, cancer was something to be ashamed of, and it still is in some cultures and faiths: http://www.wsj.com/articles/SB122304682088802359.

Autism, like cancer, is stigmatized. But there is a place for celebration and pride. People who have autism, or autistic people (depending on your preferred identification), have made huge strides in changing the dialogue around the “disorder”.

Cancer happens. Autism happens. Gay happens. Life happens.

I have to admit, I’ve often thought of just closing up from the autism community altogether, this episode doesn’t help that feeling. The idea of autism being the same as having a child with cancer is so disgusting — even if it was said out of pain, I think it’s unforgivable. Cancer carries with it a possible death sentence. I actually worry about the children of parents who feel this way. What neurosis are they developing about themselves? I remember when my son became more verbal and I was trying to correct him on his speech, he burst out with “why are you trying to fix me? Why can’t you just love me?” If you read from self-advocates, many of them felt this way. I answered my son like this “I’m not trying to fix you. I’m trying to help you. You need to be able to speak for yourself; I won’t always be able to. So I want to teach you how to do it in a way other’s can understand. Ok?”

We, as autism parents, must move away from the puzzle piece mentality of our kids as though they are missing pieces of themselves, or trapped in their bodies, or other romantic and melancholic ideas of autism. They are human.

When we started 8 years ago, the conversation was very much around “curing” autism. Wakefield’s fraudulent link between vaccines and causation was just being believed by desperate parents. The gut-theory, also since debunked, was the rage. I remember one mother telling me “God doesn’t give us any more than we can handle”, and I almost punched her. I had no idea who was telling me truths or who was selling me snake oil. Cheri’s autism page was a great asset, until she started a therapy that involved Saran-Wrap and banned anyone who asked questions. Eventually, I wanted to know what autistics themselves found helpful. I started with Temple Grandin. Then I moved on to the lady named Amanda, who filmed herself “stimming”. Then I understood stimming: it’s like when I shake my leg or click my pen. Carly came along and I wanted to know everything she had to say, until she became silent. I followed Thinking Person’s Guide to Autism and the Autism Self-Advocacy Network (ASAN). It wasn’t always easy, there were harsh words and judgments for parents like myself who believe in IBI. But since my son was too young to tell me his thoughts, it seemed obvious to know what had worked for people who had been through it.

In reading the experience of autism through an autistic person’s own voice, I found my truth. Autism was not something that was “done” to my son, or to me. It’s just something that happens. We try, as a society, to do the best things we can. We don’t always get it right. Sometimes, we get it quite wrong. Parents try to advocate for their children, but run the risk of being caught in the pits of despair and self-blame. Instead of viewing autism as a deadly illness, we should look at it as diversity.

Neurodiversity, like the Gay Pride Movement, started with advocates with in the community. The need and want to overcome (religious) stigma and gain acceptance. The self-advocate community has helped me accept my child for who he is and what his autism means.

Most of all, my son has shaped how I view autism. His perspective is unique. He has made people think and perceive differently. His life has brought joy to many others in our community. To me, that is the true measure of being a parent – how much your child adds to his or her community.

Autism can feel like a tragedy. The child you thought you are going to raise is not who you thought. Nope, he or she is someone very different. That isn’t something to lament; it’s something to explore.

One more thing: one of the interesting things I’ve noticed is that the neurodiversity movement has challenged how even the most zealous “cure” organizations into coming to accept their sons and daughters who have autism. I think that’s a natural progression in parents learning more about their children as they grow up, but also I credit the self-advocates who have not been silent.

Autism is not cancer. Autism is autism.

Support Groups: List Request – UPDATE including update on Autism Ontario’s Ottawa Chapter

Autism Ontario Ottawa Chapter has formed a new CLC and there was an email announcement recently that the chapter will be re-launching support groups again.

From Heather Fawcett’s mailer:

Hi all,

For those of you looking for the resurrection of any of the support groups, e.g., Asperger Syndrome Parent Support Group, Parents of Adults with AS, or the creation of new ones, consider lending your support by attending one of the Chapter meetings in the bulletin below. Also, there are lots of opportunities if you are interested in helping fundraise for the Chapter.

There are only a couple more weeks to register your teen or young adult between the ages of 18 and 28 for the 12-week diploma course “Transition to Life” run by Integrated Consulting out of Algonquin College  starting in April.  See the last item and for more information click on the link: https://www.integratedautismconsulting.com/transition-to-life-about.html

Heather
Asperger Syndrome News

From the Chapter Newsletter:

Happy New Year to Members and Friends of Autism Ontario – Ottawa Chapter

As we begin this New Year, let 2015 be the year of revitalisation [sic] of the Ottawa Chapter. We are currently at a pivotal point with the Chapter where there is abundance of needs and wants here in Ottawa and resources are limited and then deciding where we should focus our energy. Some of the things that are coming up on the CLC agenda in the New Year to keep you informed:

January 17th – CLC is having a strategic planning meeting to create a plan for the upcoming year.
January 13th – Creating a support group for adults who have ASD. Anyone who is interested email ottawa@autismontario.com. Meeting at the Citizen Advocacy building 7pm -9pm.
January 15th – Create a fundraising group to build up our funds to support the support groups and future projects. Anyone who is interested email ottawa@autismontario.com. Time 7pm -9pm, at Portia Learning Centre – 50 Steacie Dr. Kanata ON K2K 2A9
January 21st – Creating a support group committee to fill in the gaps that are not being met. Anyone who is interested in being part of email ottawa@autismontario.com. Meeting at the Citizen Advocacy building 7pm -9pm.
February – Family support groups will be starting thanks to our Family Support Coordinator Marnie Potter marnie@autismontario.com. Details still to come.
April – Fundraiser: Ford Drive for your community event. Date and time to be decided.
May – Fundraiser with the Lions Club of Baarhaven [sic]. More details are to come.
May – Annual General Meeting. If you want to be involved on the Leadership Council, start thinking now.

This is just the beginning. Let it be our mission for 2015 to restart the process to ensure that each individual with ASD is provided the means to achieve quality of life as a respected member of society. If you have questions, or suggestions and or you want to help in any way email me at ottawa@autismontario.com.

I look forward in working with you in making the Ottawa Chapter an effective organisation [sic] in the Ottawa region. Thanks for your support and a have safe and wonderful year.

Sincerely yours,

Andrew Wilson
[Chapter] President, Autism Ontario – Ottawa Chapter

 

Ottawa Autism Connection wishes the new Autism Ontario CLC best of luck re-launching the brand.Thanks also to Marnie for taking all of this on. It is not an easy task, but I hope the chapter will re-emerge like a phoenix once again!

Support Groups: List Request

Hey folks, I have had the question if I have a list of support groups. I used to, it was removed because it was out-of-date, several groups asked not to be published publicly, and the demise of both Renfrew and Ottawa chapters of Autism Ontario added to the confusion. For a list as of January this year, check out Debbie’s list on the Yahoo! Support Group list under FILES. Link follows, you may need to join the group to see the document “Compiled Directory”. https://groups.yahoo.com/neo/groups/autismsupportOttawa/files

In the meantime, if you wish to add your support group (i.e. you are a facilitator) please leave a comment or write on our Facebook page!

Website Revamp… Again

Hi Folks,

I hit the big red button on the previous blog.  You’ll notice that the older site, https://ottawaautismconnection.igloocommunities.com is still live — this is because I use it as a portfolio.  Apologies if this causes confusion  I will be keeping it there, but remaining updates will be here and on the Facebook page.  I’m hoping to compile a list of online support groups for our area soon. I’ll also update the in-person support groups list soon.  There’s been some changes.

I was actually thinking of ending our run, but the page has had dozens of new “likes” in recent weeks, so obviously the need is still there!

Thanks!