is changing Autism acceptable?

How much can you change Autism, yet keep
Last week in the post, Are Autism Behaviors Annoying, I mentioned a conversation which took place between me and a family member about Autism. You can read that post to see where this relative, Joan, was coming from.

Joan continued from the “…annoying,” comment to telling me about an acquaintance they recently ran into. This acquaintance (someone I also know), Lacy*, has a son, TJ*, who has Autism.

TJ’s mom, Lacy, had chosen to open a store where her son was present during business hours. Lacy cried herself to sleep every night because of the horrible comments the customers made about her son.

She couldn’t handle the criticism.

I understand that it’s so hard to hear comments about your child, or about Autism behaviors in general when your child is on the Spectrum. I haven’t spoken with her about it, so I don’t know if she felt she couldn’t run a business with her son present, or if the comments made her feel bad. Maybe she felt for her son and what he was going through. Whatever her reasons, it’s important that as Autism parents we ask ourselves where our focus lies.

Is our focus in “curing” our child so we can live “normal” lives? Or is our focus to help our child be the happiest they can be? Do we want our child to have different behaviors so we can function in the way we want, or is it because we think it will be best for our child in the end. As I’ve talked to adults on the Spectrum, I’ve learned that so much of what some Autism parents want is not what the Autism person wants.

Forcing them to fit in isn’t necessarily what’s best for them.

I’d already heard about what Lacy had done with her son to help his is our goal in changing Autism to make our life easierAutism, so I said to Joan, “I really don’t want to ‘cure’ Jeremiah’s Autism.” She looked at me as though I was an alien who had fallen from another planet. “Why not??” I answered, “Well, I’ve talked to many adults with Autism, and they like who they are, they don’t want to be changed. And second, I like who Jeremiah is, I feel he’d be very different if his Autism was taken away. His Autism largely makes him who he is.” Joan disagreed and said she thought he’d have the same personality without Autism.

I can see where it would be impossible for someone to see it from my perspective if they aren’t involved in the Autism community, don’t talk to others who are Autistic, and see the positive attributes of Autism. So many want Autism to go away, as I’ll discuss a little later.

Joan explained again what the doctor had done with TJ. He used wires which connected to TJ’s head while TJ held a dog in his lap. A video played on the screen, and anytime his brain made a connection on the “right” pathway, the dog danced in his lap, thus reinforcing that “right” pathway. Here’s my concern I shared with her, “I would have it done on myself before I ever let them do it on Jeremiah.” She gave me an odd look. I added, “I would want to make sure it didn’t hurt him. Shock therapy is being used on Autistic people and it’s not okay, so I would want to make sure it’s not painful or irritating.”

Joan replied, “Oh, it’s perfectly safe.” Well, that’s nice, but I added that there are those who do NOT practice safe and beneficial therapy.

My point of view on Autism is changing drastically, and this is an example of where people go blindly into situations and they forget to contemplate the desires of the Autistic person.

There are two schools of thought on Autism, those who want to “cure” or “fix” it, and those who don’t. Okay, maybe there are a few who fall in the middle. I was more on the side of fixing it until I began immersing myself in the Autism world by living it, studying it, and writing about it, and communicating with Autistic adults. I began to see how truly unique my son is and how much his Autism affects who he is.

Heck, we all have a little Autism in us.

In reading and talking with adult Autistics I hear many of them don’t want their Autism “cured” and some blast groups such as Autism Speaks for their drive to “cure” Autism. They like who they are. As a result of listening to their ideas, I began to see more and more of the qualities Jeremiah possesses.

I’ve also looked at the way Jeremiah has changed me, and I see how it’s drastically formed who his sister is. I feel I’m so different because of him. Yes, doing foster care changed me, but having two children with disorders and disabilities has wrecked my world, in a good way. A life changing way. My perspective of the world has changed, I have more compassion, I know that others may be dealing with underlying issues and therefore exhibit diverse behaviors. Although I have God given sensitivities, I have been made more sensitive to both of my children’s needs, beyond what would have normal for me.

Maybe I’m scared to remove Autism because the child I love so dearly would be different.

I don’t want to change Jeremiah, I adore him. It would be like me wanting to drastically change who someone else is, although I may not like certain aspects of who they are, it wouldn’t be fair for me to change them, and frankly I can’t.

The world needs to change, and Autism is one way to do that.
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*Names have been changed to protect privacy.

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why my child is “differently abled” not “disabled”

 

embracedifferences

After my son was diagnosed with Autism, I began reading articles, blogs, Facebook statuses, and Tweets written by Autism parents. I noticed some parents don’t have a problem with the word “disabled” and some don’t use it.

I didn’t have a problem with the word in the beginning of my journey with my sons Autism. I thought, “My son is disabled, why can’t we use the word?” Parents were disagreeing with many words; “My daughter has Autism, she’s not Autistic,” “My child doesn’t need a label.” When it comes to parents and their children, there can be many things to argue about, but when your child is diagnosed with a disorder or disability that defense of your child can go from hot to boiling over in seconds.

I felt parents were being particular about issues that didn’t really matter. But did they? Those issues/word definitions mattered to those parents because we are all individuals and have different experiences. It’s okay to feel strongly about something and tell others what we think, but sometimes it’s not worth arguing about. And sometimes it is, and should always be done respectfully. Unless of course someone is calling a person with a disability “retarded.” Then it’s perfectly fine to be less than poised and proper. (Side note, you can take a pledge and tell others to end the R-word here.)

In reading these articles and blogs, I came across a mom who didn’t use the word “disabled,” but said her child is “differently abled.” I like it. I wish I could remember whose blog it was on, if I did I’d send you straight over there. She was right. This idea of not using the word disabled isn’t new, I first noticed it when my son started attending preschool at an inclusive school. The school had shirts made for the students and staff that say, “I see your dis ABILITY. Everyone matters.”

Differently abled is right. My son isn’t disabled. I will fully acknowledge he has Autism and believe diagnoses are important to help our children because we then know what they are dealing with, but he has several abilities, they’re just different. So I love what that Autism mom said about her daughter being differently abled. Exactly!

differentlyabled

Jeremiah sees what we don’t see, he notices what we don’t observe, he hears what our ears tune out, he processes the world through a different filter. That doesn’t sound like disabled to me, it sounds like he has different abilities than we do.

I could go on forever about how amazing our son is; how he’s taught me about what life is truly about, how to be aware every moment of what’s around me, how his differences brought out a passion in me, how love conquers any disability. But you can just read more about him and Autism in the posts Discovering the Child Behind the Label and Viewing My Nonverbal Child Differently.

I don’t mind if people use the word “disabled.” I’m not offended, at least at this stage I’m not, but I would love for others to spread the word about the ABILITIES of special needs people. It’s beginning to happen, but we will always run into the fools, who are like the guy I overheard, say, “They overwhelm teachers with large class sizes and have high expectations, then stick the stupid kids in there.” We have a lot of work to do, but some amazing parents, professionals, adults with Autism, and advocates have paved the way.

I want others to see the ABILITIES in every person with special needs.
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