This One or This One?

Posted on July 7, 2014 by simpleijustdo

As part of the “Wishing Away the Autism” debate, one of the posts I read argued that we show too much of a positive side of autism to the rest of the world, and that we need to share more of the horror stories, that we, the autism community do ourselves a disservice by showing the nicey-nice stuff because people are less likely to support funding for research and resources if autism “doesn’t look all that bad”…

Well.

Which is clearer?

Sounds like a sales pitch to me. I guess I just don’t have patience for anything less than the truth, which is why I share the good, the bad, and the ugly on this blog. So that others on a similar journey, or even one that is not similar in the least can share in my hope, commiserate with my frustration, and celebrate our milestones right along with us.

We are all people. When you focus on showing society that autistic children and adults are real people, you will have accomplished something. No one wants to be sold a bill of goods. No one wants to see one side of the story. So why would we, the autism community, even try to do that?

Write and share your experiences, take those photos and plaster them all over your facebook wall, and bring those kiddos with you everywhere you go. By doing so, you are showing that our little ones (and not-so-little ones) are a part of society, that they are human, that sometimes they need help, and that in many ways they are just like everyone else. THAT is advocacy. Participating in society, carving out a place for them, even where they don’t quite fit. THAT models for the rest of society how our kids should be treated, THAT will show them why we need funding for research and resources. THAT tells our own kiddos that they have a PLACE in our society, and THAT creates self-advocates, which is the name of the game.

Statistics

Posted on July 16, 2013 by simpleijustdo

Here’s my take on statistics: they are interesting, but really don’t have any relevance on real life. I mean, in the scientific research community, they are incredibly important, and results of studies with certain data lead to more studies, and that’s how we make discoveries and find cures. I get that. But the funny thing about statistics is that you can manipulate them to say whatever you want them to say. And if I believed statistics from every little study that was reported, I’m not sure I’d leave the house. I’m not sure I would have had children or gotten married.

Statistics are not your friend when you are the parent of a child with autism. They can get depressing and make you quickly lose sight of the most important indicator of your child’s success — your child. He’s not a machine or a robot or a lab rat. There has never been another child like him. So while studies can try to predict everything about your child, they still have no clue. Your child is an unknown quantity, and you and he (or she) will have everything to do with his (or her) success in life, and not much else has any bearing.

Statistics are not your friend when you are getting married (and even a worse friend when you are getting remarried). They strike fear into the hearts of even the most brave among us. But again, the most important indicators of the happiness of your marriage are the two people in it. Nothing else.

So while society may decide that “the odds are against” us, I have decided nothing of the kind. No one knows these people like I do, and no “preponderance of evidence” is going to tell me something I didn’t know. No statistics are going to tell me what is “significant”. This is my life, and these are the people I love.

Tackling a Few Myths About Autism

Posted on February 7, 2013 by simpleijustdo

How can there still be so much misinformation about autism? I understand that there is a lot of research going on, and there is still a lot that is unknown, but really? Here are a few common misconceptions:

People with autism do not have empathy.

My son has empathy. There have been times (like on my birthday a few years ago), where I thought he lacked a shred of it, but there have been times that he has comforted me when I was crying or upset, or just needed a hug. In fact there are many who will say that people on the spectrum have too much empathy, and that is why they have to distance themselves from others, because they just feel too much. I particularly like Diary of a Mom’s post on this subject.

People with autism are either really good at things or really bad at things.

I believed this one for awhile, too, thinking The Boy was just really, really smart. At everything. And he is extremely bright. But you know what? He doesn’t get math too well. He has a great ear for music, is a wonderful speller, doesn’t like to read a whole bunch, although he can, and at a high level of comprehension. But math is not his best subject. I used to think it was because he didn’t like it, which is partly true. Truth be told, he struggles with it, and I’m not sure I can say it’s just because he’d rather be playing video games. But he doesn’t fail math either. In fact, he usually gets Cs.

People with autism do not have good eye contact.

This is one of the reasons I was not so sure he was on the spectrum in the very early days. In everything I had heard, this was the number one “sign your child may have autism” and it just didn’t bear true for The Boy. He was a happy, giggly boy, and did not avoid eye contact as an infant, toddler, or small child. It is more apparent now, but this is not a hard and fast rule for all children on the spectrum, by any means.

People with autism may not have it forever.

This site, which attempts to address some myths about autism, actually has this listed as fact, rather than a myth! This is basic stuff, here people. There is no cure. Autism is a neurological disorder, and you cannot “fix” a neurological disorder. You can, with early intervention and therapy “retrain the brain” to function more typically, but autism is for keeps. And this “research that shows you may outgrow autism” consists of one study. With fewer than 40 participants. What’s really at work here is those early interventions and therapies allowing those with autism to be able to function more typically in society, rather than not having autism anymore. They just hide it better. (Won’t it be a great day when our children don’t have to hide their true selves?)

What are some other myths you’ve encountered?