Social media has been able to bring those impacted by autism together in ways that were unimaginable when my son was diagnosed over twenty years ago and in many ways, the forums to connect have been really helpful. Numerous sites exist that connect me with one quick click to many families willing to share information and resources. But of late, I have become increasingly concerned about the dark side of social media after reading posts on Autism sites where parents respond with critical comments towards other parents who have shared their heartfelt feelings about how hard it can be to live with a child who has autism. Recently one brokenhearted mother asked back, “why do you have to be so mean when I am just being honest?” A bunch of other parents jumped into the battle to defend this mother, but there were several comments basically telling her that she should celebrate her child’s autism and stop trying to fix what does not need fixing. Excuse me, but those comments are just crazy.
It is generally accepted that supportive parents are proactive in focusing on building on their child’s strengths, not ignoring the areas of struggle, nor by just accepting the status quo because of a diagnosis. If the silver bullet of a cure for autism arrives tomorrow, I will be fighting for a place in line to help Micah have a fuller life than he has now. That does not mean I do not appreciate the gifts that he currently brings to those around him. The ugly truth is that we all compare our children to the children of others and some parents seem to have children with easier traits to embrace on the autism spectrum. Families sitting in the emergency room trying to get help for their child’s self abuse or violent outbursts need to know that they are not alone in their experiences; they are not failing as parents; and that the rest of us in the autism community have their backs. If you have not lived this nightmare, please know that you are only adding to the pain that already threatens to drown them by statements noting their need to celebrate autism.
I speak from experience, fortunately in the past, but still painful to remember. Several years ago when Micah was a preteen, he went through a time that he was so aggressive that he put his aide in the hospital. Additionally, his self abusive behaviors became so intense that his father and I decided that we had no choice but to take him to the local emergency room to request that he be admitted. I will spare you the details, but after several hours of being shut in a windowless room with my out of control son, the hospital sent us home as they had no beds available and really no ideas of how to help. If someone had told me that night that I should “embrace his autism”, I probably would have been committed for murder. In reality, as a clinical social worker I had access to far more resources for support that most other families would have in trying to get help for their children. I am so thankful that that Micah was helped and that today he is a gentle, genuinely kind man. If, God forbid, his self abuse or aggression returns, it will be impossible for me to keep him safe as he is now 6’2″ and weighs about 200 pounds. I pray we will never need to live with those behaviors again, but I know many other families live in fear of the next outburst, the next trip to the hospital with no hope in sight of lasting change.
It should not be too much to ask that everyone impacted by autism think twice before posting snarky comments that add weight to the heavy loads many are carrying. Yes, we have much to learn from our family members with autism and we can rejoice in their uniqueness and achievements.
But is is also OK to say that we wish our loved one and our families could be free of the autism banner that hangs over us. This is honest. No shame allowed.
Jan Lessard Peightell 9/17/19