Autism Awareness Month: No, I Didn’t Forget


I believe there is a reason such as autism, severe manic-depression, and schizophrenia remain in our gene pool even though there is much suffering as a result. ~Temple Grandin

AUTISM

Where has April gone? It’s almost over and I just now realized I haven’t done a single post for Autism Awareness Month. In between doing my taxes, working my posterior off, and worrying about my extended family in Boston following the Marathon bombing, it was low on my list of priorities. But, I feel as if I should do my part, however small.

I decided to make it simple and come up with a few autism facts, insights, observations, and random bits of trivia. I’ve been officially diagnosed (Asperger’s, before the DSM-V diagnosis controversy) for two years now. All things considered, my life is going well. I have a steady job, live independently, and can go to most public places without having a meltdown. Many people on the spectrum will never experience even those things NTs (neuro-typicals or “normals”) take for granted. I’m at the very tip of a huge, huge spectrum. What my job is, especially since I have a mouthpiece here and elsewhere, is to help everyone see that autism is NOT a “disease.” It’s a different set of wiring.

#1. Autism isn’t necessarily a thing to be cured. As Dr. Grandin’s quote indicates, I agree that there has to be some reason we have autistic people. I’ve come to accept it as part of who I am and I honestly can’t imagine life as an NT.

#2. The numbers say autism is now a 1-in-80 prevalence…but I’m not so sure. Call me a skeptic here, but since the prevalence of AD/HD is also supposedly 1 in 5, yes, I’m a skeptic. I don’t believe prescription meds are a substitute for good parenting and good environmental conditions, though they can be helpful.

#3. Big-name groups such as Autism Speaks don’t always have our best interests in mind. As this blogger writes, often these organizations (like many nonprofits) are more in it for themselves. Can you imagine, say, a cancer nonprofit without any non-cancer survivors on its board?

#4. A diagnosis of autism has helped me connect better with my friends and family. It’s not a magic bullet, but it has helped me understand why I communicate the way I do, and how to use what I have.

#5. People on the spectrum don’t need sympathy; they need support. Like I said, autism is not a death sentence and it’s not contagious. Plenty of people on the spectrum can make regular and valid contributions to society if only they are given a chance. Look past the diagnosis and see the person.

#6. The best autism advocacy is grassroots. Locally, I don’t know what I would have done without dedicated groups like the Autism Society of Middle Tennessee and The Center for Understanding. These folks get it, and they make it their life’s work to help others get it. I encourage anyone with autism in the family to get involved in a local group.

#7. I feel like Tarzan or Mr. Spock sometimes. What I mean by this is: when I am in a group of primarily Autie/Aspies, I feel like an NT; when I am with an NT group, I feel overwhelmingly Aspie. I am forever part of two worlds but fully belonging to neither. This can be a terribly lonely feeling.

#8. Pragmatism is key. I’ve always been a fan of “whatever works, do it.” Be unconventional and try new things. I know I did and it’s made all the difference. (If anyone has read about Dr. Grandin’s famous squeeze machine, you’ll know what I mean by this.)

#9. Autism along with other conditions, such as depression or anxiety, can really hurt. There is no denying that America has a huge crisis when it comes to mental health. We need to stop stigmatizing it and start treating it from the ground upward. These illnesses unchecked can cause untold fallout (and yes, they are real illnesses.)

#10. By and large, people on the spectrum are not dangerous. With the recent tragedy at Sandy Hook, autism has been in the news. I highly recommend this article by noted autism advocate and author John Elder Robison to help dispel some of the mythical connections between autism and sociopathy.

#11. Being autistic is hard enough, but being autistic and female is even harder. With far fewer girls than boys diagnosed with autism, girls and women can slip through the cracks. Because we are less likely to conform to rigid Western ideas about femininity and gender roles, life is an uphill battle for us. (I also recommend this article by another amazing autism advocate, Dr. Tony Attwood.)

#12. Love is not a foreign concept to us on the spectrum. Again, so much of what we think of as “normal” is dictated to us by media and social custom. There is a prevailing image of autistic people as cold, sexless, distant, or haughty. What isn’t widely known outside the community is that we can be loving, faithful, and dedicated partners or spouses. We also usually make loving parents.

#13. Autism is just part of who I am. So is being right-handed or having big feet. It doesn’t define me or stamp me with some kind of scarlet “A” for autism.

#14. I want to help others affected by autism. With the increasing prevalence of autism, there will be great need of people to help those in need. Since I’m pretty much stuck in neutral at my present job, the thought of becoming an autism counselor has often crossed my mind. What better way to give back?

#15. Words matter. Just as I wouldn’t dream of using racial or religious slurs, nor should anyone else use slurs such as “retard” or “space case” to refer to someone on the spectrum. It is offensive and it appalls me to know that people are still using this language in the 21st century. We can’t help being this way any more than we can help the color of our skin or eyes. This is why we need awareness.

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I encourage my readers, both AS and NT, to get involved with a local autism organization this month and beyond. You may make a huge difference…read the famous Starfish Story if you doubt how little things can make change.

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~ by Howlin' Mad Heather on April 25, 2013.

19 Responses to “Autism Awareness Month: No, I Didn’t Forget”

  1. Hey! Bumped into you on the dance floor at Susie’s … even though we didn’t chat. Now I know why! I’m so glad to be here and have several friends I want to share this post with immediately! Keep writing! This is just TOO good. Thanks!

    http://patriciasands.wordpress.com/2013/04/14/travel-theme-benches/

  2. Susie sent me your way and I’m glad she did. It wasn’t until recently that I realized I have friends with autistic family members. I can’t pretend to understand what they go through on a day to day basis, but I have figured out that the best thing I can give them is an ear to listen and support where I can. I’m learning that autism is more about thinking differently than it is a “disability”. Great post.

  3. Great post! I can definitely relate to the meme πŸ™‚

  4. “Autism isn’t necessarily a thing to be cured.” Thank you. The young man I know is perfectly amazing just as he is, and a finer human being than the vast majority of “normal” people I’ve encountered. Why on earth would I want those “normal” people to “cure” him. It sounds like the Borg wanting humans to assimilate to me. Instead of saying these people are somehow “wrong” or need to be “cured,” we should appreciate what they have to offer just as they are. Thank you for your excellent article.

  5. Ii think everyone should embrace their own unique personalities as well as those around us. I love you just the way you are Heather! No one is completely normal anyway. We are human and I for one, am far from the norm!!!
    Excellent post Heather!

  6. […] Autism Awareness Month: No, I Didn’t Forget by Heather Konik, an Aspie herself, who makes several astute observations including, “Autism isn’t necessarily a thing to be cured.” […]

  7. I’m going to reblog this. Thank you for shedding light on autism and sharing some of your experience.

    I agree with your comment about the mental illness stigma in this country. I’ve been aware of this fact for a while because I dated a guy who was bipolar, but no one is figuring out a way to help or stop judging people just because their brains are wired differently.

  8. Very interesting, especially the article in #11 which makes me wonder if I am borderline myself as I relate to so much of that. Good to read your blog again, I do miss it, but I understand as mine has had much longer gaps πŸ™‚

  9. Really good article. What comes over most is the importance of seeing the person not the diagnosis. I know that’s becoming increasingly important in my experience of autism (two step-children). Nice to see Prawn and Quartered back btw πŸ™‚

  10. Reblogged this on Ramblings of a Twenty-something and commented:
    very good read

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