From Dr. Kerry Magro – Speaker, Author & Autism Self-Advocate
Dear ER & medical professionals,
Growing up with autism I dealt with severe sensory challenges. Bright lights would hurt my eyes. Loud noises would either have me covering my ears or bolting away from the noises. There were plenty of meltdowns. These are all too common reactions for many of us on the spectrum. Experiences like going to a doctor and/or hospital can be scary for all children (and adults) but especially for someone like me who has autism.
Long waits in emergency room waiting rooms created heightened anxiety. The bustling activity in the ER seemed chaotic. Above all, the most challenging was communication. My parents who knew me best would try to explain what was going on and how it was affecting me in order to try and help the emergency room staff understand and deal more effectively with me.
Staff rarely understood me and treated my family as if they were impediments. One of the most hurtful things during those years was, when instead of communicating to me, medical professionals would only communicate to my parents instead of what each procedure would entail. They would see a kid with autism and think that because of the basic definition of autism – a social and communication disorder – that it would be too much for me to process.
I was constantly frustrated, frightened and stressed by these interactions. I think back now as an adult and wonder how parents felt when they had to disclose to ER staff in front of their child they are autistic when some children don’t know their diagnosis and how confused the child was.
I hope when you read this letter today you will realize those with autism and special needs are always a person first before you begin to discuss our disability. When you communicate with me directly and give me a detailed description of what is about to happen, you can gain my trust. Another thing to remember is that you don’t grow out of autism – children with autism turn into adults with autism.
Another obstacle I want you to know about is my pain scale. We have all had a professional tell us at one time or another that “this will just hurt for a second,” but for those with autism like me who have a heightened sensitivity to pain, those feelings could linger.
Thankfully, many professionals such as yourself are now realizing the importance of truly understanding our autism community. Those with autism are 8x more likely to go the ER room and 52x more likely to go to a doctor. This is why training for healthcare professionals is of utmost importance.
Additional ways you can help individuals like me is considering having your ER or Urgent Care Center become a Certified Autism Center™. The International Board of Credentialing and Continuing Education Standards can provide your staff with the latest research and best practices as well as evidence-based training to enhance your care for individuals with autism. It can be so helpful to families and adults like me to be reassured that all the professionals have received training on how to help me.
I want to thank you for taking the time to read this letter and I hope you know you can make a huge difference in this community.