By Steven M. Brown – @Autism3x on TikTok
Illustration by Michele Elise – @michele_elise on TikTok
About two months ago, I started an account on TikTok to share our experiences raising three boys with autism. During this time, we have received great feedback and one specifically that caught my attention was a parent who stated that “we are breaking down the stigma of special needs”. I had to think a bit about what she meant and reflect upon it. There are a few stories that I will share with you in this article on parents’ feedback and potential impact it has had. During the two months we have posted well over 200 videos, received over 12,000 followers and over 70,000 likes and too many comments to count. We read every comment as best we can and have a group of moderators that are extremely helpful during our live events. Purpose of the live events is to interact with my son Chris when I am with him and answer any questions the audience may have around special needs.
- During one of the live events, I shared my experience with antipsychotics. My son is non-verbal and has difficulty communicating the way he feels. As a caregiver and parent, I am his eyes, ears, and voice. We did not know what medications would work for my boys but anytime my son was on an antipsychotic his behaviors became very odd. For example, he would cower in the closet with his closet door closed in the dark curled up. This was a clear signal the medication was not right for him. So this and several other antipsychotics made his behaviors very odd and proved they were not right for him and we decided he will no longer be exposed to them since he cannot communicate how he feels. His actions communicated volumes of information telling us to stop them. I had shared this experience with the audience and a parent personally messaged me and I was able to arrange a zoom call with him and he thanked me. I asked why and he told me about his daughter on Abilify and was banging her head on the wall and would not sleep. So he started weaning her off the Abilify and she had practically stopped her head banging all together. I equated her reaction to her wanting to get the feeling out of her head. I could not imagine what nonverbal kiddos are experiencing. I realize these medications may work for some but not all kiddos on the autism spectrum. They did not work for ours though.
- Second story I want to share is about a lady who lives in Austria and her child was putting non-food items in her mouth. I shared the story of how my boys had pica and also put things in their mouths at a younger age. The tongue is a source of input to the brain for my kiddos because the tongue can taste, feel texture, etc. I shared how I had used chewies for special needs to mouth on for sensory stimulation. I sent her two as a gift so she could try them and she was very appreciative for sending them.
These are two examples of the information shared and one of our followers commended us for posting videos of the boys because she said, “we were breaking down the stigma of special needs”. Her feedback prompted me to write this article and share with our audience, followers, family and friends.
During live events on TikTok, the audience consists of caregivers, autistic adults, those that want to learn and parents trying to figure out what they can do to raise their autistic child. I will say I am not an expert with a degree in Applied Behavioral Analysis nor am I a doctor, but I know the power of a network of parents raising children with autism. This network effect can shatter the stigma of autism and special needs. The only focus we have has been how to improve the quality of life for our children or those we care about that have special needs.
I just want to revisit the network effect. TikTok is a global platform (Austria, Canada, USA, UK, Finland, Australia, etc.) that has connected us with people from all over the world who have expressed interest and support to this purpose. I am excited to share our experiences and know that the knowledge we share with each other during the live events will develop in a greater global network to help each other overcome adversity.
Comments are closed