Making it Good…

by Kimberly



                               

Autism is controversial on many levels. This being autism awareness month, and the recent release of the newest data (from 2008) by the CDC on the rising prevalence of autism is making me more conscious of just how controversial it is.

  • To begin there are several different viewpoints: adults with autism who self-advocate, parents who advocate for their children, teachers, therapists, doctors, scientists, and the celebrity spokespersons. Everyone has a theory, everyone has their own idea of what is best. Everyone has a different perspective. So far I am fine with all of this.
  • There is a lot of mystery surrounding autism. No one even KNOWS what causes it (though some people claim special knowledge on this.) Genetics or environment?
  • Treatment options are limited and not 100% effective for every individual. There are those who argue that no treatment is necessary. There are others who think everything should be tried in order to find a cure.
  • Because autism is a spectrum disorder, even the symptoms are hard to pin down. Each individual has their own set of unique challenges, and although there are broad similarities, the details can be quite complex.
  • Even describing the spectrum is hard – high-functioning, though part of the diagnostic lexicon, is falling into disfavor because it is vague, and hard to quantify.
  • Add in the people first layer and the word autistic suddenly becomes an insult, unless it’s not.
  • Acceptance or awareness?
  • Over-diagnosed or under-diagnosed?

…I’m probably leaving out a few debates, too.

Mystery breeds controversy. I think that much is safe to say.

I tend to shy away from all of the debate. I do have my opinions on most of these issues, but I recognize them as opinions, not dogma. I don’t have a corner on all of the answers for autism. If I did I suppose I could write a book, make lots of money, and head out on the speaking circuit. My guess is the truth lies somewhere in the middle on most of these issues. I choose to stay out of the fray, not because I am above it, but simply because I really don’t have the energy for it.

I am too busy trying to keep our little family moving in a positive direction. Every day is a battle of its own making. Yesterday perhaps was about finding the money to pay the bills. Today maybe we focused on getting the laundry and the errands done. Tomorrow we ponder how to get work done while getting the children to all of their activities. Finding the library books that were due today. Monitoring Grandma from afar. Attending marathon school board meetings. Making soup from leftovers in the fridge to stretch the food budget just that little extra bit…all of this while keeping tabs on the child, her moods, her needs, her education, her health, and the wonderful person she is becoming. My energy is poured into making things as good as possible for all of us every day. There just isn’t any energy left over for throwing venom at people who may disagree with my opinions.

I am dismayed at how we (the autism community) chew each other up sometimes. I don’t think much good comes of it. I think our energies could be better spent trying to solve the mysteries and making things as good as possible for all of us. What do you think?

Email Author    |    Website About Kimberly

Kimberly is the mother of three wonderful children: an eight-year-old who is somewhere on the autism spectrum, and twin four-year-olds who are just very busy little people. We live on routine with a side of novelty.

View all articles by


                               

This post may contain affiliate links. When you use them, you support this site. Thank you!
See our Disclosure Policy for details.
1 Danielle April 19, 2012 at 12:26 am

Well said, I love your last line- about not enough energy to throw venom, so true- I might have to use it (and site you of course : )
Life if hard enough; with SN kids we MUST support, advocate and educate each other!
chin up

2 KDL May 17, 2012 at 1:50 am

Thanks, Danielle! I agree…how much further could we all get if we work together?

3 Nancy April 19, 2012 at 1:51 am

Hi Kimberly,
As an SLP who has worked with hundreds of families and children with ASD over the last 15 years, I have learned that each individual situation is entirely unique. However, I like the way you asked th question, “acceptance or awareness?” Hands-down, I believe that regardless of where an individual falls on the Autism spectrum, their overall success/potential is greatly influenced by the level of acceptance and awareness (and subsequent supports) from others.

4 KDL May 17, 2012 at 1:52 am

Thanks, Nancy. Honestly we need both, I think. There is still a large misunderstanding of what autism can look like for an individual, and even once we’re aware of all of that there’s another step or two to arrive at acceptance and support.

5 Charity Deleon April 20, 2012 at 1:54 pm

I have a daughter with Cri du Chat Syndrome and PDD. I too stand as you away from the spotlight. I also think it all falls somewhere in the middle. No one really knows but yet everyone thinks they know the hard truth. Every person/child is different and not all treatments or therpies work for everyone. I have already had my share of critical parents in my path. I choose to stear clear from the negative or know it all’s.

6 KDL May 17, 2012 at 1:54 am

Charity – thanks for your comment. I am already learning from you. I haven’t heard of Cri du Chat and will have to do some digging to learn more (I have posts dedicated to this on my personal blog and will add this to my list…) I believe you are wise to steer clear of the negativity. It feels like it’s hard to avoid it sometimes, at least in the on-line community. Stay strong!

7 Jo April 20, 2012 at 2:53 pm

You write so well. While we are not dealing with autism we are dealing with “different”, or whatever you want to call it.
Your seond last paragraph resonates so very true.
We all are trying to do the best we can whatever the challenges.
Thanks for sharing.
Peace

8 KDL April 20, 2012 at 8:16 pm

Thanks, Jo – I always look forward to your comments. Here’s hoping you overcome whatever challenges you are facing today. Best.

Comments on this entry are closed.

Previous post:

Next post: