Monday, February 10, 2014

This blog is not for you

"If you had known that your son would have autism, would you still have had him?" they ask me.

Sometimes, late at night, thoughts that I work so hard at pushing away during the day time creep out of my subconscious and plant themselves so firmly in my brain that there is no way for me to ignore them.

I lie awake, my head spinning, with these thoughts taunting at me- like shadows dancing on the walls of a candlelit room.

It is often in these dark hours that my brain finds fleeting moments of clarity, of epiphanies.

Sometimes, a sleepless night can change my entire world…

I've had a few of those nights lately. And I know that I now faced with a few choices to make.

Sammie is Autistic. This is something I understand and accept, with no difficulty and no reservations.

It is his identity. It always has been.

He life hasn't changed from one day to the next.

But mine has.

Somewhere in this journey, I have become an "Autism Parent".

It's not a title I would have chosen for myself. It's not a community I expected to join. It's not an identity that I was born with.

And yet, somehow, it is what it is.

Does this mean that my entire life will revolve around Autism?

Ha ha.

It already does. ;)

But it all seriousness, what does this mean? Where do I fit in? There are clear camps in this "autism community"…do I really belong to any of them?

There is a lot of division and anger between the Autistic Self-Advocates and the Autism Parents. In many ways, I can understand why. Autism, while beautiful, can also be complex, challenging, and downright difficult to manage. It creates very unique life challenges for all who are touched by it, Autistics and family and friends alike.

Yes, Autism Parenting is deeply impactful. It is a life altering change- one that is completely out of your control.

Change can be terrifying, even when it is change for the better.

Yes, it's true. Some days are hard. Some days take the wind out of you. I am not going to sit here and pretend that there are not moments of weakness where I ask myself "How did I find myself here…???"
There are days were I feel trapped.

There are days where I feel alone.

And so we find ways to cope as well as we can. And for many of us, that means sharing our thoughts through writing and building ourselves a community of people who understand us and to whom we can relate.

It's human nature to want to not feel alone.

And my experience, as an Autism parent, is an important one. It is one that should be validated and treated with whatever amount of respect one treats human beings who are doing their best.

Whether I like it or not, I am part of the Autism Parenting Community.

But there is another community within the world of Autism: The Autistics.

This is their world.  They are the ones feeling the meltdowns and the euphoric joys that can come from a ray of light reflecting on a mirror. They are the ones who live the social interplay, all too often as outsiders being told "look what you could have if you only tried hard enough." They are the ones trying to make their way through a world that is designed to make it difficult for them.

They are the only ones living the Autistic experience.

 This is their world, and I am but a tourist. 

Apparently, understanding this makes me controversial. I've gotten a fair amount of emails/messages sending me gentle warnings about not 'aligning myself with the self-advocates'. I can feel walls going up around me. People who were once so friendly and warm, suddenly looking at me as if I were now sleeping with the enemy.

Because why? Because I have said that I value their experience and input on my son? Because I have said that I believe that Autistic minds have always be here and that they have a great deal of good to offer the world? Because I would not change my son in any way that he didn't want changing?

Because I know my place in the Autistic community is to be supporter, not the person holding the bullhorn?

I have no idea how to navigate the vitriol and hatred that I have encountered in the past few days. I have no emotion means of justifying the abuses that I have witness. I have no ability to pretend it didn't happen, or to say that somehow it is ok because I had a hard day, or year…

As I watched these self-advocates getting attacked, all I could think of was this:

My god, what if someone was saying this to Sam? 

Because, in a sense, they were. They just didn't know it.

These people who claim to be the defenders of "low functioning and non-verbal children with autism" everywhere, they were saying these things to other human beings who were desperately pleading for their right to live.

Pleading for my son's right to live.

I don't know how to reconcile what I witnessed these past few days, but I will say this:

If that is what Autism parent advocacy looks like, I want nothing to do with it. 

And yet, I'm not Autistic.

So where does this leave me.

Should I even bother continuing to write? Who would I be writing for anyway?


I write for Sam.

He's the only person I owe any loyalty to.  And one day, he will grow up and he will read my journey. And when he does, I hope he's proud of how his Mama talk about him and how she talked to and treated others.

"If you had known that your son would have autism, would you still have had him?"

Unquestionably. Undeniably. Without any reservation.

If you even have to ask that question, then this blog is not for you.


  1. OMG Zita! Did someone actually ask you that question? That is so many shades of wrong I can't even fathom... I am so sorry. And like I said before, what you are doing for Sammie is amazing. Keep it up Mama Bear!

    1. Natasha: I get that question at least once a month from super well meaning people. They don't consider the implications. It's similar to those who ask me if I'm relieved that Charlie is "normal" (which, btw, despite the fact that she seems to be developing completely typically, it is way too early to detect any sort of significant delays at this time). When I explain what that question is really asking me (i.e.: Do you think Sammie's life is valuable or do you wish he had not been born), they quickly retreat their words. It's never intended to come across that way, but they also don't take the time to really think about what is being said either...

  2. I love this. I am autistic and a parent to autistic children. The voices and experiences of autistic people are critical in any discussion. I get a lot of questions from people who are shocked to learn I had another child after having twins (one of whom was showing signs of autism and my daughter also later dx) I would have all all 3 of them again in a heartbeat.

    I am so glad to have found your blog.

    1. As I mentioned on FB, I'm a huge fan. You are definitely one of my favourite mama bloggers and you have shown the world the very best face of autism parenting (and on a sleeplessness that I can't even begin to imagine.) You are more than welcome here. <3