Tuesday, April 22, 2014

My Top 5 Pet Peeves as a Mom of a Child on the Spectrum

Since plunging into the special needs world last fall, not having realized before then that I was actually a member of this particular parenting club and had been for a solid three years, I've discovered amazing support, advice and friendships.  I've also discovered that there are things that I never, ever could have imagined, things that people do and say have shocked me and made me feel sick to my stomach since joining this particular parenting "club."
In general, when it comes to questions about autism, I'm pretty hard to offend and tend to be an open book.  I think that genuine questions are great and I love answering them.

Part of spreading the type of autism awareness (and acceptance) that I'm on board with promoting involves answering questions and so far I can't think of any that I've been asked that I haven't been willing to take the time to answer.  

Still, I have to admit there are comments and statements that cause an instant, knee jerk, less than charitable response to come spilling out of my mouth (or keyboard) and today I felt especially inspired to write a post about them.  Here are my absolute pet peeves as a mom who loves a little girl who sees the world a little bit differently than everyone else, with all my heart. 

Pet Peeve #1- People who prey on vulnerable families to make a few bucks.  There's one thing that can get a comment deleted faster than just about anything else (okay, other than out and out profanity since that's so easy to spot).  It's linking to a site that promises to cure my child's autism in 5 easy steps (or whatever it is they're selling).  

These people have learned that there's money in taking advantage of parents who are often desperate enough to try just about anything to try to do something that they think will help they're child, and they're trying to ride that fear all the way to the bank, even if it means doing something like... oh, I don't know... encouraging parents to have their children drink bleach.  

It's easy to spot these sites.  They generally promise to "cure" or "resolve" your child's autism for the low, low price of $xxxx (generally not a low price at all... but come on, it's worth it, right?).  Just fork over the money (sorry, what they're selling isn't even evaluated by any medical body, so insurance won't help) and they'll give you back a shiny new neurotypical child.  

Think of it this way.  Autism is in the news a lot.  Actual progress in helping autistic people, and even not so helpful stuff, makes the news, a lot.  Do you think that if there really were a "cure" it would be on some obscure website begging to take your credit card to ship it to you in the mail (let's not even delve into what I think about the idea of a cure for a certain way or processing information, that is and has been it's very own post)?

Run, don't walk, if you come across these types of snake oil salespeople.  

Pet Peeve #2- Scare Tactics.  I know I've talked about this before, maybe a little too much, so I'll try to keep this short and sweet and not name names.  Any organization/person who tells you that your life or your marriage is over because on your children has gotten an autism diagnosis from a doctor is out of their mind.  Remember that they don't know you or your family.  

Every person in the world faces their own difficulties in life.  Some challenges are harder than others, but they're each our own and I don't find reading about how afraid I should be to be at all helpful.  It doesn't help me reach out to my daughter or communicate with her, in fact, it absolutely could hinder it if I embrace the notion that her way of communicating is somehow inferior to the ways in which the majority of people communicate.  

The first time I used a therapy technique I learned that involved imitating Mae's sounds and motions, her whole face lit up.  We couldn't even go on because she wouldn't stop hugging and kissing me, over and over again.  She was thrilled that I was attempting to communicate with her on her own terms.  And suddenly she was much, much more interested in trying to communicate in more typical ways, as if somehow I'd extended a hand and was helping her over the span of distance (in communicating) that stood between us, by showing my interest in her own favorite form of communicating.

If I'd embraced the fear and had reacted as if her way of communicating was wrong, I don't know if we ever could have reached the point we reached in that very first session.  

So I'm not a fan of any method that uses fear to spread "awareness."  Even if fear is a lucrative marketing tool.

Pet Peeve #3- Studies that Announce How Mom is to Blame This Week.  Nearly every week a study is released, and is quickly picked up by the major networks, claiming to have discovered the underlying cause for autism.  9 out of 10 times, it's something that the mother did at some point along the line.  

In the "olden days" (a few decades ago) doctors blamed refrigerator moms for "giving their kids autism by being too cold."  Things have changed, but not all that much.  Now if you ask people why they think the autism rates are "increasing" (I lean more towards the idea that doctors are more aware of the various signs of autism and how to identify it, so there are more accurate diagnosis' for kids who would have gone without help a decade ago) they'll often say something like:  "It's because moms eat too much junk food."  

Today I learned that Mae's autism was "caused" by the spinal that I had with my c-section.  Last week I'm pretty sure I read something that said that it was because I brushed my teeth with toothpaste that had fluoride in it.  I'm awaiting the day when there's a study that says something like: "All mother's of kids with autism have, at some point in their lives, imbibed water!  Water causes autism!"  

It's ridiculous.  

Pet Peeve # 4- There are people who actually say: I hate "autism moms."  Did you know that there are people who actually go around sharing that they feel this way?  It's a sentiment I've seen splashed across the internet. There are actually quite a few women out there who feel the need to share this every single time they hear the word autism.  

It's weird.  I mean, generally it's not socially acceptable to say "I hate (fill in the blank with a group of people you believe a stereotype about and just can't stand)."  It's just not.  But I'd say that while reading about autism I come across this at least once a week, if not more often.  

Generally, if someone decides to feed the troll by responding, they'll spout something about how they raise kids that are spoiled brats and don't expect anything from them.  

I'm sure there are probably autism parents that let their kids get away with a lot, just like there are parents of neurotypical kids that let their kids get away with just about anything... I've just never met any.  Most of the parents of kids on the spectrum that I know, are trying to help their kids be the best they can be and that absolutely involves consequences and discipline (something I know I should write about more!  It's just not something I've thought much about writing on, since I'm usually trying to think of the more positive aspects of our day to share).  

So these types of total blanket statements always have me shaking my head... and they have me wondering why so many people think it's an acceptable view to share with others!

Pet Peeve #5- Anyone who Talks About Autism and Eugenics in the Same Breath.  I'm not sure how much I can elaborate on this one without breaking off into a rant about how evil this is.  Because it is evil.  Can I tell you how incredibly, incredibly grateful I am that there isn't a prenatal test for autism?  I'm so, so grateful.  I don't even want to think what the "termination" rate would be for those poor babes that came back as potentially being autistic.  

If you doubt this is true, try reading articles about mom's who kill their autistic children.  Generally women who kill their children are vilified in our culture.  Unless that child was autistic, in which case both the media coverage and the public reaction to the media coverage involves a sudden understanding of why the mother did it, because our society is very, very quick to put those who are different from the norm into a category that is somehow less than human, and apparently less deserving of our protection than baby seals or endangered whales.  

I absolutely believe that this is in large part a result of people who indulge in the fear mongering I mentioned in Pet Peeve #2 and it's part of why I take that sort of tactic so very seriously.  Dehumanizing people is never an appropriate fundraising technique and it has far reaching consequences.  

And that is my list of things that drive me crazy about this zany world that we live in and it's approach to dealing with those on the spectrum!


  1. Thank you for sharing so much of what you learned! I love hearing about it!

  2. I'll be honest, I went into this post with an open mind, hoping to learn how I can be more sensitive to a mom with a child who has autism. But it seems like all the stuff you listed are people just not using common sense. Which is sad...

  3. It really is sad! I think sometimes, common sense is a little less common (I don't know if that's how it's always been, or if it has to do with people saying things in our technological times that they maybe wouldn't have said to a mom face to face). I think generally if people just try to be be polite they'll generally be okay... it's just that quite a few people don't!

  4. I totally agree Cammie. Well said. I am praying that there isn't a screening for autism in the womb. It frightens me. Where would all our wonderful people go? If everyone was the same the world would be a pretty darn boring place. Ignorance is not always bliss. It can cause some serious damage to our society.
    I was however happy to see that autism screening form at my child's doctor. I wish it had been there 6 years ago. I love reading about Mae. She is such a sweetheart. I think if you shared about your discipline with her it could help others. HUGS

  5. I think you are so right, that people say things now in our technological times they maybe wouldn't have said to a mom face to face. But silence back then didn't mean acceptance. Even in the "olden days" many people rejected and avoided severely non-nuerotypical kids and their families, blamed moms, and could be just nasty not only to the child but to the siblings too. It just wasn't so anonymous.
    So even though we know so much more these days about the brain, and so many good people are working hard to study and help those on the spectrum and their families to find a way to function better together, there is still a built in bias in our culture against "abnormal" (in the scientific sense of the word).
    But I often wonder what will happen in the next generation, when so many kids (what is it now, 1 in 68?) who are on the spectrum grow up and with their voices and writing begin to change what it means to be "normal."
    I, like you, think the incidence of autism isn't that it's on the increase, but just a matter of more diagnosis, because as I think back of the kids in my neighborhood I grew up with (and there were tons of them since I am of the "baby boom" generation). I knew kids who: ran into doors and desks, stumbled on nothing, broke pencils from pushing too hard and tore holes in paper erasing, fidgeted like they had "ants in the pants", ran like maniacs at recess, climbed not only to the very tops of trees, but up gutters and up the walls of houses in the gangways (amazing to see!), loved to slam into other kids (is that why some kids excelled at Red Rover?), and squeezed into pipes and tires to roll down a hill, or just hide, and many other behaviors I now see on lists of behaviors that may indicate some kind of sensory impairment. No one thought these kids were really anything but kids, doing things kids do.
    I understand when these sensory differences cause problems in development and the missing of milestones, there needs to be something done to help bridge the gap of communication and growth.
    I'm glad you focus on the amazing girl Mae is, instead of the expectations of the child rearing books that define all she isn't. Who knows what she will ultimately become? Isn't it a little unfair for people to predict the outcome for her and your family (not to mention your marriage!) based on the past, when so much was unknown about how to intervene and help? I think so.
    God bless. You're doing a wonderful job. (And 16 DAYS TO GRADUATION!!!!!) ~ Bonnie

  6. I love reading about Mae. She is helping me change the way I feel about my step-son. I didn't grow up with him in my life. He was never a sweet baby, or an exploring toddler, or a pre-schooler. When I came into his life, his mother referred to him like a dog. His godmother said the same things. It dehumanized him to me and as a completely inexperienced and very scared new person in his life, it has absolutely impacted how I talked about him. I'm not proud of it, I've lost months of my life in fear and anger, and I know that I only thought I valued life until I was introduced to your writing, your journey, and your faith. Thank you. :D


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