Too often when working alongside children with autism I hear people say, “Oh he’s just mildly autistic,” as if this somehow exempts the child from needing support or patience or understanding. Somehow ‘mild’ means ‘pretty much typical’ in some minds. I’m here to tell you, there is nothing ‘mild’ about autism no matter where you fall upon the spectrum.

Today I took my son to a Children’s hospital to have a minor outpatient surgery. This was not his first surgery of this nature and it won’t be the last. My son also has something called Eosinophilic Esophagitis, a very painful disorder that affects the esophagus and requires multiple upper endoscopies with biopsy to determine course of the disease and effectiveness of treatment. Because he is also autistic, we know that this is doubly difficult for him. We prepare him for the stress of unfamiliar environments, unfamiliar staff, and unfamiliar sights, sounds, and smells by walking him through the sequences over and over and over before he takes one step inside the building. By the time Ewan gets to the OR, he could write the book on how to do it. That repetitive exposure to procedures is comforting to him. Now this may or may not work for all children on the spectrum, but it works for Ewan.

Children with autism deal with enough anxiety on a daily basis and whatever parents and staff can do to reduce that anxiety in special circumstances, the better off everyone is. The more we work to reduce anxiety through cognitive and language supports, the less we need extra medications and the less we require the need to use restraints. The supports we can provide children with autism quite often are free of charge and require nothing from you but a change in your mannerisms. Let only one person speak, slow the rate of your speech, turn the lights down, maintain a calm demeanor, and explain as much as the child needs you to. Allow them to explore the materials and the space in a safe way. Give them the time they need to acclimate to such a foreign environment. Respect the fact that this child is experiencing EVERYTHING in a way you can’t imagine. None of these things cost you anything. None of these things take superhuman strength or unrealistic expectations on the part of caregivers.

However, if we look at a chart labeled ‘Mild Autism’ it’s easy to assume that mild means you’re off the hook. It’s easy to assume that this ‘mildly’ autistic individual doesn’t need your support, or your patience, or your understanding—after all, he’s only ‘mildly’ affected right? Wrong. There is nothing ‘mild’ about autism, no matter where you fall upon the spectrum.

It’s like being a ‘little bit pregnant’. You either are or you’re not. You can’t be ‘mildly’ pregnant. If we assume that a ‘mildly’ autistic individual is mild based off his verbal speech ability, then we forget that his coping skills may not be on the same level. If we assume that a ‘mildly’ autistic individual is mild based off his lack of screaming and kicking and biting the staff, then we forget that his sensory needs may still be great—that the environment may still be too loud, that the smells may be nauseating, that the lights might be provoking headaches. If we assume that a ‘mildly’ autistic individual is mild based off his superior knowledge of bugs, then we forget that autism is a social disorder at its heart and that anything involving other people—most especially strangers—provokes serious anxiety at the situation. And the anxiety can be subtle. The child with autism may not appear anxious to those who don’t know him or her. It’s easy to assume that this ‘mildly’ autistic individual needs no extra steps of comfort to reduce that anxiety.

It is unfortunate that in this day and age that there still remain such deeply entrenched misconceptions about what autism is and what autism isn’t. It is unfortunate that we as parents and professionals advocating for those with autism must do so loudly and repeatedly. It is unfortunate that often, parents are the only champions and advocates a child with autism has in this world. And certainly, I was the only advocate for my son this morning in that hospital and I make no apologies for being the ‘Mom From Hell’. It takes so little from others in this world to improve the quality of life for individuals with autism yet we continue to fight so much to receive such small mercies. The barriers these children and adults face every single day are more than most people will climb in a lifetime. Don’t be yet another barrier in their lives. Be the support they need. Be the change they deserve.