When Families Affected by Profound Autism Feel Isolated in the Autism Community
When Ian was first diagnosed, I use to jump headfirst into any and all support groups and discussions. I used to look at it as, “It’s not a disability, it’s a different ability.” I would post supportive articles and quotes all over my profile, post all the happy and quirky aspects of autism that made us laugh and unique. As the years went on, there was a shift. I’m not exactly sure when that shift started to happen, but I found myself looking back and wondering when was the last time I posted a funny story or posted on an online autism support forum? When was the last time I felt like autism was a gift? What once used to make me feel welcomed and part of a community, made me feel anxiety, loneness, and frustration. Where were others like me? The moms with the kiddos who don’t talk, who will probably never utter a word. Where are the moms whose kids are still in pull-ups and may never be toilet trained? Where are the moms with kids who have intellectual disabilities? Where are the moms with kids that are aggressive? And so on. I saw more and more judgement against families who didn’t feel autism was a blessing. Why is that a requirement to fit into the autism community? When did I start feeling like autism wasn’t a blessing? Where does my family fit in? I felt a shift within the autism community, the community I was supposed to be a part of, feel support and understanding. I no longer searched for comfort and understanding from within the autism community, the kind often found in support groups, blogs, and even within our very own neighborhood communities. I became more isolated. I only looked for support from families like ourselves, who weren’t afraid to separate high functioning autism from profound autism, who were ok with the distinction and didn’t judge us for it. I was careful who I let into our world, especially those within the autism community. As the years went on, I began to carve out a space for families like ours, ones I hold close and I’m fiercely protective of. The profound autism community exists. Often times we don’t see our autism as a blessing. We hold dear our loved ones who are severe and profound but we do not judge those for being scared, frustrated, and wishing things were different, and dare to say: When we wish our loved ones didn’t have profound autism. Instead of judgement and contempt, we fill each other up with words of understanding and support. Why is there isolation within the autism community? How do we change this? What is the answer? I’m not sure, to be honest. Is there a way for the autism community as a whole to find support and understanding together? To stop judging and understand not everyone is going to feel and see their circumstances the same. We all have battles. My hope is, one day, the autism community can come together from high to low and everything in-between.