Wednesday, May 27, 2015

The great divide within the autism community

My daughter was diagnosed in August, right before she turned two years old. I did everything on the pamphlet that the Neurologist gave me when he said "You're daughter has Autism Spectrum Disorder."

I told family, she was already receiving EI but we were now going to be getting much more...intensive in home therapies everyday. I was praised and commended for being her advocate and getting her diagnosed early and for did I fight! 

The pamphlet mentioned finding a support group, I looked and found none. I turned to the internet to find Moms and Dads like me, I knew I wasn't the only one who needed to talk it out and talk with people who get it, people who are living it, just like my family. 

What I didn't know was that there is a great divide in the Autism Community I didn't realize that not only would I be fighting and advocating for my daughter, but I would also be fighting and having to explain myself on how I advocate for her. 

I see it everyday...the great divide! 

I try and stay clear of it because I have a job to do. I am a Mom, Caretaker, Wife, Advocate, and I'm a person living with Autism! No, I do not have Autism...but my daughter does! I change her, not knowing how long she will be in diapers, I keep her safe by bolting furniture, and keeping all doors and windows locked, my kitchen chairs have been on top of my kitchen table for almost a year, I take her to every appointment and there are many, and I sit down on the floor EVERYDAY during her therapies so that I can take it all in and learn it so that I can teach her for when her therapists are not here. Her needs come before mine and I gladly make it that way...I have a job to do! 

I am an Autism Mom, I'm living with Autism! Autism came in to our House when Zoey was 14 months old, and it didn't just change Zoey's life, it changed all of us! I have become her voice, caretaker, teacher, and advocate...I'm living it with her, her sister is living it with her, and her Daddy is living it with her. It affects us all. We are her support system! 

So it baffles me when I see heated discussions through the Autism Community! 

"You can't call yourself an Autism Mom"

"You don't get it because your child is high functioning"

"You don't get it because your child isn't severe"

"Don't call me an Aspie"

"I refer to myself as an Aspie"

"No labels"

"Accept it, he or she is Autistic"

I've watched the fighting and I have seen people get mean and's sad!

A child with Autism has a different journey and path than that of an adult with Autism. Each person with Autism is on their own unique and beautiful path...who is anybody to judge how a person advocates for their young child, or how someone chooses to advocate for oneself? 

Don't we all want the same thing in the end? 

If we are judged by the way we choose to advocate for a child, teen, or an adult with Autism, then I'm truly saddened! 

That's not true Autism Acceptance! 

We need to Accept that "if you've met one person with Autism, you've met one person with Autism!"

We need to Accept that each path and journey will be different, and that the great divide isn't helping...everyone has their own story and how they choose to tell it...we need to accept that! If we as a community can not Accept one another, how can we ask others to? 


  1. Zoe is there an easy way to follow your blog? I would like to but cant seem to find a link.

  2. Hello!!

    We can be found on Facebook and Twitter:

    Life of Zoey - Living with Autism

    Life of Zoey

  3. Every adult with Autism was once a child with Autism. Nobody understand what being a child with Autism is like better than an adult with Autism. When it comes to matters of Autism, Autistics deserve to have a voice, and their voice should be respected. No neurotypical has the right to tell an Autistic person how to feel, think, or speak about Autism, because it's them who live with it, and neurotypicals will never know what that's like.

    1. I agree. Wholeheartedly.

      However I think it's important to insert that an adult with autism does not automatically know what it is like to parent a child with autism. And on this blog in particular, the child with autism is very young and nonverbal. So until she has a voice, her mother is her voice. No adult with autism can truly speak on her behalf the way her mother can, although they may be able to give insight. It's a fine line between respecting others opinions and absorbing them as your own. No two experiences are alike.

      Which, I believe, is why we should all listen to each others' opinions rather than fighting over them.


  4. That's why it is good to learn from both children and adults. My experience with Autism is that of my child, her journey and ME doing everything possible that I can do for her as far as advocating, just as I believe an adult should advocate the way they want. That's why each path and journey is different and unique...each person is unique. And I'm not just talking about Special Needs...I'm talking we as People, Human Beings, we are different and unique and each story is beautiful...we all have our own stories to tell. My daughter can't tell her story, so I am her voice until she has one, her advocate when needed, forever her Mommy that loves her!

  5. Thank you...Advocating for those who can speak and for those who cannot...United together we can make Awareness and Autism Acceptance happen!