2012-05-14

Meg's Story: Elijah Has Autism

Guest post by Meg Jobes
Reflection at the Unitarian Universalist Fellowship of Gainesville
Delivered 2012 May 6, Sunday

My name is Meg Jobes, a member of this Fellowship for two years, and a mom of four extraordinary people. One of those extraordinary people, my little son Elijah, has autism.

One in every 88 children is being diagnosed with autism. That’s a big increase, and it is because we understand better what autism really is. Many of the classifications of special needs are no longer being used or are now being correctly classified as autism. For example, it used to be common to diagnose an autistic child as mentally retarded.

Kids think differently and learn differently from other kids, but they are not retarded. Nor are most of them like Dustin Hoffman’s character in “Rain Man,” nor are they savants in general. They do take longer to show their skills in some areas.

Elijah appeared to be able to read when he was just a baby – a trait known as hyperlexia. Actually, he had memorized all his books.

Autism Spectrum Disorder is an inability to understand social rules, sometimes an inability to verbalize, and seems to contain another disorder as part of it known as Sensory Processing Disorder, or Sensory Integration Disorder. There’s a lot going on with these kids, and, while they have some things in common, it’s different for each one of them. In Eli’s case, he cannot understand how to do basic things like read an expression on a face and assess what the person might be feeling at that time. I might feel angry, but it is impossible for him to understand the look on my face or the tone of my voice as angry.

He’s a sweet guy, my son. He senses the world in a different way, so he doesn’t act the same way. When he’s sitting here in the congregation, he might find the lights too bright, or the noises too loud or too soft. He might feel the air is strange on his skin or that the smell in the air is unbearable.

He can’t express his thoughts and feelings like others. We’re lucky if he can manage to use words to ask for help or to tell me he needs the bathroom. He has developmental delays so that he may look 9 years old, but he acts anywhere from 2 to 9 years old, depending on the situation. He is not undisciplined or intentionally trying to disrupt or be annoying. He simply cannot control the way his senses process information, so sometimes he jerks or claps or makes a noise so he can cope with the environment better.

Imagine sitting in your chair and an overwhelming light envelops you while discordant noises assault your ears and funny smells assault your nose all at the same time. So you clap, because that can make you focus on only the clap and not the overwhelming amount of information coming in. That’s what we think he and other children with autism are going through every day.

Eli wants to be here. He asks to come to church. Some vibe in the air, some feeling of normal he gets here makes him want to be here, despite how hard it can be.

We talk a lot in our fellowship about diversity of beliefs, of culture, of class, of race. The time has come to talk about neurodiversity. Every brain processes inputs differently and forms responses differently. Some brains – like the ones my other three children have – process within the range we call “neurotypical” – which means their brains work more-or-less the way we expect them to – so far. Who knows if any one of them will be assailed with challenges such as depression or ADHD or something else a little non-neurotypical.

We don’t understand much about how brains work, though, if the brain is typical, it’s easy to act like we know "what’s going on in there." Autistic brains surprise us. The strange and unusual ways they process their world startle us into realizing that we do not, in fact, know "what’s going on in there." With 1 in 88 children now diagnosed with a form of Autistic Spectrum Disorder, we, as a society, are going to have to figure out how to make those kids a part of an adult world that doesn’t work for them right now.

We need to look at any person with understanding and acceptance and strive to understand who they are.

I learn from Eli every day. You can learn from him, too. That little boy or girl who cannot sit still, who seems to be the biggest brat you ever saw, may be facing challenges you can’t see. His parents are probably exhausted, stressed, scared, embarrassed, ashamed. They are also proud, loving and stronger than almost anyone.

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Part 2 of "Neurodiversity"
Next: Part 3: "The Holy Wholly Other"
Beginning: Part 1: "Gator Wrestling"

A slightly different version is posted on Meg's blog: Click here.