An Evolution Of Theories

By Julie Sando

20 years ago I believed Autism was a behavioral disorder.

10 years ago I believed Autism was a social disorder.

Today I believe Autism is a sensory-motor disorder.

Why?

All we knew to do 20 years ago was behavior-based. But that didn't feel good to me. I would leave work and cry but I did what I was told. I was doing my best to help the kids I worked with.

Then I found a relationship-based approach. This felt so much better! I got to love the kids...and it was ok with my supervisors. :) But I was still looking at their behavior and assessing that they didn't grasp social concepts. And I still saw so many parents burn out from the long hours with little progress in return.

Then I let go of techniques, programs, and 40 hour a week expectations and focused on being more natural with our kids. I let go of seeing autism first and saw the human first. I started helping families come together in bigger ways and I help them figure out this new normal...and I encourage them to start living and experiencing life. I started to see more growth when we stopped trying so hard. When we let go of expectations for normalcy and allowed things to unfold naturally, things started flowing more. We opened ourselves up to unforeseen possibilities when we stopped trying to place them on a chart of where they were "supposed" to be.

I still do this in our Natural Play Therapy Courses. But things have evolved and changed again...

When Kaegan's family flew me up to meet "The Real Kaegan" (which is extremely different from the Kaegan I knew and had worked with for the previous 13 years) my whole world shifted. The 18 year old who seemed to desperately need us to answer the same questions about the Wiggles over and over, day after day, was spelling to us that he wanted us to ignore his mouth! Do you know how many years we valued each and every word that came out of his mouth as gold?!

I had a choice in that moment. Do I embrace this and recognize that my life's work was based on some less than useful strategies? Do I feel guilty or bad... even though I had the best of intentions and everything I did came from love? Or do I take that seemingly easy road of counting this as a one-off and go back to my normal ways?

I couldn't unsee what I saw. And it felt amazing... to finally hear what Kaegan was saying... even though it defied so many ways I interacted with him in the past. He knew I was coming from a place of love. He holds love for me, and recognizes I was doing what I thought was respectful and loving. He asked for me to come meet the real him as he knew I could make a difference for others.

It turns out I was being respectful to his body. But with the brain-body disconnect, I wasn't honoring who he really was on the inside. It could be easy to go down a path of guilt but Kaegan assures me he felt the love. He knew our intentions. There is nothing to forgive.

I still wondered if this was just Kaegan's experience. I wasn't sure how this could be the case for the hundreds of other kids I know. But I was now open. And curious. I started referring clients to start down this path of communication and sure enough, one by one, each of these kids and adults shared about their brain-body disconnect.

Every. Single. Family... Expressed similar thoughts along their journey (before their child was able to communicate fluently): "But my child is different from that child who is able to communicate." "My child gets overwhelmed by too much information." "My child will get upset if I don't respond to the things he wants me to do over and over." "My child can't _____." They all believed enough to try, but had way too much evidence that made it hard to fully embrace that their child could be like Kaegan.

It turns out, this seems to be a normal part of the process. At first I had a hard time trying to help parents get this before their child was able to communicate. I really tried to convince parents to see this other side of possibilities for their kids. But it felt so scary for the families. They have spent years getting to a hopeful place, only to be let down after huge emotional, physical, and financial investments left them with regrets or unmet goals...or even worse... regression. Parents learn to protect themselves. It makes perfect sense. I get it. It is a leap of faith that can feel scary to take.

One of my families and I came to a good agreement... They were going to continue to be with their child in the way they always were... repeating their part in his movies lines, helping him watch his Disney movies, talking to him as they always did. This way of being was how they connected with him. They enjoyed this way of being with him. And they were ok with me speaking to him differently....in a more grown up way. They were ok with me not responding to his movie lines and ignoring a majority of his stims as I taught him age-appropriate lessons and helped him learn to use the letter boards.

And eventually he too was able to tell us that he wanted us to ignore his repetitive language. His life and his parent's lives have totally shifted. We are constantly in awe of just how different their lives are. They always considered their son to be a non-responder. Whatever they tried, he didn't take off like other kids they saw. Nothing seemed to make a big impact. They looked at other family's successes and felt sadness at how they weren't able to experience what they do. Their lives became smaller and smaller as they felt more confined to home as their son (well, his body) protested each time he left the house. It looked and felt like torture to take him anywhere. So they stayed home, out of respect and not wanting to add more stress to his life. They just wanted him to be happy and he seemed happiest at home.

Now that he can communicate, it turns out he wants to experience the world! He tells us to take him to the climbing gym. He went to a live orchestra playing in a large theater viewing of Harry Potter. He went to a spin class. He goes to events with his family. He is experiencing the world. He was invited to be in a wedding party!...like standing up front IN the bridal party during the ceremony! Each time his body protested the new event but we now had the confidence to work through it. And each time it gets easier and easier. Suddenly, he is a responder.... at 17 years of age.

He told us he wants to eat new foods.... this coming from the guy who ate the same 10 foods for well over a decade. He has now eaten steak, salad, rice, a sandwich, avocado... the list goes on.

Honestly, I had to be patient with his parents through the process. I could see it before they did. And I wanted so badly for them to see it too. We had to find a balance until their son could tell them directly and I made peace with the process.

What we are doing here is different. I am not there to do it for you. You get to take steps toward increasing your level of interaction with your child. We aren't asking you to jump to any extremes and to let go of old ways of being. We are asking you to pick a way or two to shift in how you interact with your child. Your homeplay (because we prefer play over work) will guide you through the steps, one step at a time.

I still catch myself responding to the childish things their body does. It still makes me smile when they sing those old songs or flap those hands with great enthusiasm. I still respond to some of the things they tell me not to. I was very engrained for many years to respond to those loops. I love the little intricacies of each kid. And I share more about myself with them now. I share stories with teenagers and adults about how I met my husband or my most embarrassing moment in college. I tell younger kids about what I enjoyed when I was their age. And I look for ways to share those interests with them in a bigger way. I share things I would have never thought to share before. I look for ways to feed their brain. I speak to who they are on the inside.

Know that I presume competence in you. I know you got this! That is why you are here! We are here to celebrate successes. We are with you, in this process, to hold your hand, to talk about what doesn't feel right, and it is totally ok to express what is true to you. It is all part of the process. We will find a way to help you take one balanced step at a time (from where you are currently standing) toward your goal of getting to know who your child is on the inside! Your job here is to be honest, to share your process, to share your concerns, to share your shifts and successes. Your job is to participate as much as you can. Our job is to understand when life gets crazy and you get behind. Our job is to provide tools that match your individual situation. The more you share, the more we can help you do this!

I ask you to do what I first did. I ask you to be open. And curious.

We look forward to your family's evolution!