THE BLOG

In Our House, We Stim

08/21/2014 04:30 pm ET | Updated Oct 21, 2014

My oldest autistic child is almost 16. My youngest autistic child is 7. I have four other kids aged between 19 years and 18 months old. I've been parenting for a long time, and tried a lot of different things.

When I first knew it was autism causing our son's challenges, I tried a heap of strategies to help him. He was older when diagnosed, almost 8, so we'd been using our own strategies until then, and having some extra input was helpful. Besides, I had to do something because all I ever heard about autism from society was that it was bad. However, it was with sadness that I noticed that a lot of the strategies the professionals wanted us to use relied on him appearing to be less autistic to be considered successful, when what I really wanted was people to help him with the things he needed to go to school and do well without needing to be different than he naturally is.

When my daughter was diagnosed at 2 1/2, I noticed the same thing. So we didn't do much therapy, because I didn't see much point trying to make her into something different than she is. Anything we chose to do was simply because we could see clearly how that therapy would support her in being herself and teach her skills to manage life in a world not designed for her.

I still had an internal conflict going on, though, because what we were doing was at odds with the messages we were getting from the people who were supposed to know. The doctors kept asking when we were going to do this therapy or that. And I tried not to feel pressured into committing to things I wasn't comfortable with.

The best thing that happened during this time was that I met some autistic adults. It was such a relief to hear from them about their experiences in life, both when they were young and now as adults. I was empowered by hearing things like, "there is no wrong way to play" from Cynthia, and this, from Amy:

I am presumed to be competent. It is not by everyone and I still have to deal with pity, ignorance, disdain and the usual skepticism. But every day, and with a consistency I am happily getting used to, I am seen like a whole person, a complex human being, someone who has worth.

An autistic child's sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child's attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of "social and communication deficits," by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience." - Nick

"I want you to teach your children to say no and I want them to know how to mean it and back it up when they say it. I want you to teach your children to value themselves and I want you to teach them to own their bodies." This quote is from Sparrow, in her confronting essay "No you don't" in which she talks about the dangers of teaching Autistic children compliance.

"Autism in our family is activism because the alternative is self defeating.
It is a deep yearning to make the world a better place for people like us to live in," writes Lei

These words helped consolidate my ideas and the insights I gained from listening to them gave me confidence to continue letting my autistic kids do what comes naturally to them and support them by offering strategies to try when things are hard.

We are just making it up as we go, but in our house, that works. There is no formula for what we will do when we reach a certain stage. We concentrate on the here and now. We make decisions using the information available and we follow our instincts a bit. If our instincts aren't being helpful, I ask someone who can help... usually an autistic person, often my kids. After all, why would you not ask the person who needs help what kind of help they feel they need?

I appreciate the opportunity to be a member of communities like Parenting Autistic Children with Love and Acceptance, We Are Like Your Child, and Autism Women's Network. These groups have been instrumental in supporting me to gain confidence in advocating for my children, and beginning to help them gain the skills to advocate for themselves. Listening to the folks there share there stories helps me know how to better hear what my children are telling me and to better support them when they have difficulty negotiating our intense and demanding society.

So in our house, we stim. In our house, we meltdown. In our house, we make allowances for each other. In our house, we sometimes write down our feelings and frustrations to share them more easily than trying to speak them. In our house, we take lots of breaks from the big world out there. In our house, we are ourselves, without apology. It's not tidy. It's not easy. It's not what I expected my family would look like. But it is safe. It is liberating. It is home.

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Earlier this year, I was reflecting on our family journey. I wrote a poem that celebrates having reached a place of acceptance of us all in all our differences and individualities. I called it "We are perfection". It finishes with this:

"There is nothing wrong with us -- we just aren't what most expect. 
There is nothing broken in us -- we are just in the minority.
There is nothing to be fixed in us -- we are just works in progress. 
There is nothing particularly special about us -- we are just like you in many ways. 

We are neurodiversity represented in one household. 
We are surprising. We are one in 100, or one in a million, or just us. We are humanity.
We are the ultimate, the greatest thing since sliced bread, the bee's knees. 
We are spectacular! 
We are perfection."

You can read more about Michelle's parenting journey at her blog Amazing Adventures