Autism Advocacy: The Double-Edged Sword

6/19/2013

Our little sensory-seeker turns into a sensory-defender sometimes.

A little knowledge is a dangerous thing, but a little want of knowledge is also a dangerous thing.
Samuel Butler

Below are examples of why this quote rings true for autism advocacy. I swear, I heard everyone of these with my own ears.

(I don't expect you to get a PhD in all things autism, but for the love of Buddha read a damn article or something. If you work with these kids or you know one (and you all do) you owe it to them to get educated about what it is like for them.)

(For the sake of symmetry I added ten things to each list, HOWEVER, I have heard many more nice things than bad. The bad does standout sometimes, though.)

Things that made me go hmmm??

1. Autistic kids just need more hugs. They love to be squished. (Kate seeks pressure, but come on!)
2. Autistic kids are really good at puzzles.
3. If you feed them dairy they'll become more autistic.
4. I heard you can cure it...if you stop feeding them carbs.
5. What can she do? Like, what is her special thing?
6. At least she can talk.
7. She doesn't look autistic.
8. Did you know Jenny McCarthy cured her son?
9. She looks normal to me?
10. Have you heard of Temple Grandin? Carly Fleishman? 'The Spark'? The guy who can draw an entire city from memory? ((All facinating people and I adore the stories but I do get these comments twice weekly :))

Things that made me sad:

1. Oh my God, I am so sorry. I know a woman whose kid still can't talk and he is like 22.
2. I heard Autism is caused by pregnant women breathing in exhaust from cars/eating feta cheese/feeling guilty about not breastfeeding etc. (There are too many of these to count)
3. Did you do anything strange when you were pregnant?
4. Will she always have it? Can they fix her?
5. I hope you still discipline her. Give me two weeks with her.
6. That is so overdiagnosed, it's ridiculous.
7. Really, 'cause Grace is so smart?
8. It's not called Autism, it's called mentally retarded. (<----Oh Yes, she did!)
9. Did you vacinate her?
10. I'm so sick of hearing this. I am autism'ed out.

Things that made me happy:

1. What can I do to help?
2. Is there something I can read that will help me understand? (Best response ever!)
3. Everything is going to be ok.
4. What does that mean?
5. How is Grace?
6. Kate is still the same Kate you walked in that office with.
7. Can you help me understand what that means for Kate?
8. Let's talk or not talk, but either way let's drink.
9. I think I love her more, if that's possible.
10. Holy shit, really? Well, let's do this.

29 Comments

Melissa

6/18/2013 11:08:59 pm

Every item under things that make me sad are things that make me homicidal. You're a better, more patient woman than I. I'm not sure I could keep my composure as surely, a punch to the throat would have been delivered on my end. Particularly to items #5 and #8. Kate & Grace are so lucky to have you guys!!

Shanell

6/19/2013 08:29:51 am

Melissa,
I destroyed them in my mind. :)

Tammy link

6/18/2013 11:45:07 pm

Some of those have my blood boiling!!! Oh, and BTW my son has Down syndrome as well as autism, and my mother-in-law DID use the term "mongloidism" because she thought it was a current medical term. That should tell you eeeeeverything you need to know about her!

6/19/2013 08:30:58 am

Tammy, have you checked out the blog 'Mostly True Stuff"? I think you'll love it! But still come back here ;). Your mother in law sounds like a treat.

Ellen

6/18/2013 11:54:46 pm

This is a very accurate list. I am amazed at the misconception, myths and ignorance that surround ASD. As a single mom attempting to date I was appalled at the level of awareness, or lack there of, that there is. I am all about educating but some people are not willing to be educated and feel more comfortable holding on to their romanticized ideal of autism.
I was floored when the last guy asked me what autism was. He asked me a whole bunch of good questions then said, "I need to do some research and learn more about the condition so when I meet her I can better understand her." I was so ecstatic I almost cried. We have been together for a while now and he has continued to learn and grow with her.

Michelle

6/19/2013 12:08:47 am

I really appreciated your posting. What would you suggest as the best thing(s) to read?

6/19/2013 12:27:35 am

I gave him Parenting Your Asperger Child. Not that I was expecting him to parent but this particular book REALLY highlights my daughters particular issues. Plus I had made notes about her in the book. I also have created a portfolio for my daughter that discusses just about EVERYTHING specific to her. This includes evaluations, teacher comments, doctor notes, babysitters input... I am not with her 100% of the time so her reactions to things can be different. I use all this information to help new people who are working with her better understand.

6/19/2013 08:39:16 am

That is a fabulous idea Ellen! I will steal it. You are so right. Our children have different relationships with different people. Sounds like you met an awesome partner too. I love that he went off to do research before he met her! Win!

6/19/2013 08:41:36 am

I tend to tell people to read parent blogs. I find parents are the true experts when it comes to a child's condition or diagnosis. Try "Just a L'il Blog", "Homestyle Mama: With a Side of Autism" and "Sleep Deprivation Diaries" just to name a few! :) Also, I loved the book "Challenging the Myths of Autism." :)

Jana

6/19/2013 01:05:32 am

I had an insurance agent ask, "So, this Autism thing, will he grow out of it?". After emailing him websites he called 3 days later to apologize. I would like to add one to the list......"He's Autistic? You mean like Rainman?" :)

6/19/2013 08:35:53 am

Yep, that needs to be on the list :). I'm impressed that the agent called and apologized. He'll never make that mistake again thanks to you!

Lindsay

6/19/2013 01:09:45 am

Heard most of those, and more...what gets me is hearing them from actual doctors. I had one tell me that my daughter is too bright to be autistic, she makes eye contact so she is just fine, she just has behaviour issues because of my bad parenting...and he is a pediatrician :s

6/19/2013 08:37:38 am

Lindsay, I am wary of listening to 'experts' now that I have seen and read so many conflicting ideas among the so called experts. I have a team I trust and those are the people I listen too. I am glad you are wary too! I think your daughter was too bright for that doctor period!

April T. link

6/20/2013 12:03:21 am

We had a very similar experience. Our son's pediatrician handed us an outdated, barely readable, heavily overprinted questionnaire that had like ten questions, questions like "does your child have more than five words," "does your child know his name," "does he look at you?".....and so later on when our verbal but non communicative son who would make minimal spurts of eye contact, and who knew his name, even if not in context began to worry us, she chewed us out and told us his issues were because I worked late (despite that my only son was well attended by my mother during work evenings). When we figured it out that it was autism and asked her for a referral to a behavioralist to get a true assessment, she was affronted. "You filled out the form didn't you???"

laurel

6/19/2013 03:04:25 am

thank you for your humanistic approach to help people see ways to be supportive. We all encounter what seems to be negative and sometimes ARE just ignorant mean statements-- but i think most people lack knowledge and dont know how to ask so this is a great tool for people to learn some VERY BASIC ETIQUETTE! I shared it and hope all my peeps share it too. thanks for your candor!

6/19/2013 08:42:38 am

Thanks Laurel! Love the shares. You are so right about basic etiquette. Sometimes it doesn't extend to special needs kids and their families.

Deanna

6/19/2013 03:24:38 am

People can be really ignorant. I realized that I have to be the one to educate and inform those who choose to accept information. Those who don't, keep it moving. I am way pass the stares and comments because as long as they aren't feed, financing or f*&ckin me, I don't care about them.

6/19/2013 08:43:45 am

Deanna, And here I thought I had a potty mouth, lol. Educate them one at a time :)

Sara

6/19/2013 04:26:53 am

You're amazing. This post is perfect.

6/19/2013 08:44:31 am

I know, it's a burden. KIDDING!

Megan

6/19/2013 06:34:04 am

Unfortunately the "sads" we hear too often.

One time a coworker of mine said "My kid's been running a fever for almost 2 days. We're going to take him to the hospital because we dont want it to turn into Autism."

WOW! Way to go Doctor! Why didnt I think of that with my kid?!?! Oh wait, because it's not a freaking fever that did this.

Unless you're an autism parent, you will never understand the unnecessary guilt and stress you can put on yourself...of course you will also never understand the monumental achievements in the small things and your pride of being a dedicated parent.

Love this! Keep it up!

6/19/2013 08:46:19 am

Megan, That is my new FAVOURITE autism story. That is the worst one ever LOL.

Jo Ashline link

6/19/2013 01:57:01 pm

You're amazeballs for posting this.

Seriously.

6/20/2013 11:09:42 pm

High Praise Jo!

Jo Heroux link

6/19/2013 02:24:44 pm

I really loved your lists. I have spent a lot of time reading to learn and I agree with you, I have learned the most from mom posts. I've read a few dad posts that were amazing also. You gotta live it to teach it, I'm convinced of that. I have been an avid reader and admiration society president of Amy Schindler for a couple of years and I adore her straight forward approach to sharing her daily highs and lows. You are the best teachers for those of us who care so much and know so little.
I am learning every day. Thank you.

The Domestic Goddess link

6/19/2013 10:53:15 pm

I could add so many more to this list. Seriously, sometimes people suck. My personal fave was, "What's WRONG with him?" or "Don't they have group homes or institutions?" Ugh. But I do get many, many nice comments.

6/20/2013 11:11:41 pm

We should start a running list somewhere. It would probably break the internet. hmmm? You have me thinking.

Susan

6/19/2013 10:58:08 pm

A doctor that I work with ( Yes, I said, "DOCTOR") said three of the sad comments to me just last week.

6/20/2013 11:12:51 pm

:( How depressing. I wish we could interview doctors before we work with them. I am so glad Kate's are excellent. I feel ill for you.

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I talk about Autism, a lot

Autism Advocacy: The Double-Edged Sword

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