Autism Challenge: Isolation from the Community

By Bonnie Arnwine

This week I had the pleasure of meeting with a local children’s museum that is exploring creative ways to open up access for children on the autism spectrum. When I shared my adventure with my friend she sent me the following reply. I’m sharing it with you because it’s too good to keep to myself.

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I was encouraged yesterday as you were telling me about the possibilities that someone was thinking of children with special needs and their need of 'a place' to enjoy, feel safe, and be supported as they interacted with things they loved.

I thought back to the the time Daniel was between 3 and 8. The only place I could safely take him was your house, the church playground, and my back yard. These places were enclosed, I had full view of where he was and what he was doing.

Then you moved. Loneliness and isolation became my closest friends. My sons' communication was so poor, his runny nose so annoying and his actions so 'weird' that not many wanted to be involved in our lives.

It was about this time that a new play place opened: the Jungle.

I went there with my son. They had fully enclosed tunnels, ball areas, jumping places, rolling places, climbing places and young workers stationed all around to make sure things were as they should be.

I found it a little sad that the only place in town that I could enjoy with my son was "The Jungle". One could not help but think of the animal, aspect of that statement.

Imagine telling anyone the only place you could take your son was “the jungle.”

There were tables and chairs placed all over in different areas. Some were tucked in out of the way places. I always sat the same place so he would know where to find me. They had a food area where things were sold, and generally we had a treat each time. I would sit and read, do my Christmas cards, visit with strangers. I loved it.

During this time I had no clue that my son was going from table to table sampling peoples food and drink! It was weeks before I was told! In fact, he would just go up to the food counter and grab what was sitting there. He had no clue he had to buy it.

A young man that worked there came over to me one day and asked if Daniel was mine. I said he was and he proceeded to give me a list of purchases that my son had not made, but eaten..... I thought it was funny, but he did not! He stated that Daniel just took what he wanted off the counter.

I walked over and tried to explain to him that to Daniel the counter looked like our kitchen counter at home. I also suggested that food should be out of a 4 year olds reach. His reply, was that my child "should know" .

Today, my son is 24. I have spent his lifetime educating him on things he 'should know'. Looking back, I wish someone would have used their time and money to include a place for those 'who should know' but don't.

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I too have felt isolation, faced judgement, and lots of misunderstandings throughout the last twenty years. I’m so grateful for the continued awareness and empathy our communities are building. Let’s continue to have conversations about understanding and access. Everyone deserves the opportunity to engage in and explore all their community has to offer. Love, Hope, Support Autism!

Bonnie Arnwine is the President of National Autism Resources, the author of Starting Sensory Integration Therapy, and firmly believes all individuals on the autism spectrum deserve opportunities and supports to live fulfilling lives.