My speech about autism and my son, given at UUFG today

This is my speech as I originally wrote it. It was edited down a bit for the speech in the service today, but I like it as I wrote it so I’m going to publish that version. If you are from UUFG and you are reading this, thank you so much for your kindness and care for our family and for letting me have an opportunity to talk to you about my son and autism.

Hi Everyone! First I’d like to introduce myself to you all, in case you don’t know me or you are a visitor today. My name is Meg Jobes and I am a mom of 4 extraordinary people. I’ve been a member here for a bout a year now.  The reason I am talking to you today is that my little son, Elijah, has Autism.

 

I just found out last month that now 1 in 88 children is being diagnosed with autism. Yet, so many other people have no idea what that means now, or why it’s going up so dramatically. Well, it’s going up so dramatically because every year we understand more about this disorder and what it really is. Many things that we used in the past to classify children with special needs are really no longer being used or are being correctly diagnosed as autism. An example of this is mental retardation. Most kids with autism are not actually mentally retarded, they just think differently and learn differently than other kids. They are not the rain man or savants in general, but they do take longer to show their skills in some areas. Elijah could “read” when he was just a baby, this is known as hyperlexia. What he was really doing was memorizing all his books.

 

So, what the heck IS autism?  Autism Spectrum Disorder is basically 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. In other words, there’s a lot going on with these kids, and it’s different for each and every one of them, but they have a few things in common. 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.  But because he senses the world in a completely different way than you and I do, 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. He is 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.

 

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

 

Lastly, I want to give you guys an idea. We talk a lot in our fellowship about diversity. We’d like diversity of religion, race, emotions, you name it. But we haven’t talked about neurodiversity. This is a concept where we realize that everyone has a different brain, and it works differently than ours. My other children would be called neurotypical because their brains work the way we expect them to, at least for now. Who knows if any one of them will be assailed with challenges such as depression or adhd? All of these are things that we know makes our brain just a little different than typical. Well, autistic persons have different brains. We have yet to understand all the strange and unusual ways their brains work, and how to utilize this in our future, but the fact is, 1 in 88 children are currently being diagnosed with a form of Autistic Spectrum Disorder and 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. Definitely something to think about. For our congregation, and others in the world, we need to look at any person with understanding and acceptance and strive to understand who they are. Eli is autistic. I learn from him every day, and I hope that you can learn from him, too. Understand 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. He or she may look like other children, but she isn’t like other children. Her parents are probably exhausted, stressed, scared, embarrassed and ashamed. But they are also proud, loving and stronger than almost anyone.

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Published by

Megan Jobes

About to graduate college, moving into a job in the computer programming industry

2 thoughts on “My speech about autism and my son, given at UUFG today”

  1. Megan,
    Thank you so much for sharing this at today’s service and I hope you will bring Eli on UUFG on SUndays.
    Erin Parish
    UUF Member

  2. Megan,
    We haven’t met, but I’m the new(ish) DRE at UUFG.
    I didn’t get to hear your talk, so I’m so glad that Becky Moulton forwarded this page to me. I really enjoyed reading your speech, and learning about Autism from your perspective. It was lovely.
    I’d love to meet you and your children! If you’re interested in RE for any or all of them, I’d love to talk with you about any special needs any of your kids may have — including Elija, of course.
    Nureet Carmel
    DRE at UUFG

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