Autism Parents: Common Myths and Misconceptions about Moms and Dads Raising Kids on the Spectrum

by Jo on February 25, 2013

 

These are a few things we have in common as autism parents. But that doesn't mean we approach them in the same way. Photo courtesy Morguefile.com

When Andrew was first diagnosed with autism in 2004, I remember feeling incredibly alone. Back then, autism was rarely discussed (negatively or positively) in mainstream media (or anywhere for that matter) and I was desperate  to connect with other parents who were on a similar journey.  I quickly discovered a wonderful group of fellow moms and dads who became a source of comfort and information, but more importantly, I discovered that though we shared a common denominator – raising children with autism – we also differed in many ways.

One of the biggest myths parents have encountered is that there’s a “one size fits all” approach to raising a child with an autism diagnosis. Family, friends, and strangers are often under the assumption that what worked for “my neighbor’s best friend’s uncle’s cousin,” will work for our child as well. In fact, though our children may share certain autistic qualities such as stims or sensory sensitivities, how those qualities manifest themselves may vary greatly from one child to another.

Speak to almost any autism parent and you’ll likely hear the same sentiments: “I want the best for my child,” or “I believe my son or daughter is capable of amazing things,” or “My child is worthy of being given appropriate accommodations and opportunities to succeed,” but the way we approach these goals and sentiments is dependent upon how we see the world, which is through an individualized pair of lenses tinted by cultural influences, religious beliefs, and ultimately where our children reside on the autism spectrum.

The truth?

We’re often just as unique as our autistic children, using parenting styles and therapeutic interventions that make the most sense to us, and if you put seven of us in a room together, we’re fairly likely to disagree (rather passionately I might add) about the often conflicting and confusing information available out there regarding autism and how to effectively help our children succeed in the world.

It’s important to keep that in mind, especially when offering the latest insights from your “night school teacher’s clarinet coach’s dog trainer’s grandson.”

Assuming that we’re all alike – wanting the same end result for our kids and using the same means to get there – can be frustrating, and it’s not even the only misconception out there about us.

So this post is dedicated to the many myths surrounding parents who are raising children on the spectrum. Some amazing, loving, wonderful, moms and dads (not to mention talented writers) contributed to this piece and it’s our hope that together we can begin to dispel some of the misinformation out there about our very unique, very diverse parenting community.

The following is a list of some of the most common myths and misunderstandings we’ve encountered while raising our children on the spectrum:

We have special powers endowed by God or otherwise: We are regular parents, with regular faults, weaknesses and feelings. Saying that we are special because our kids are puts us on an impossible pedestal, and separates us from regular families. – Lexi Sweatpants, Mostly True Stuff

We don’t love our kids “just the way they are : Seeking out therapy or other interventions does not mean we see our children as flawed. Rather, it’s that we spend every moment trying to help them adapt to and navigate the world around them as best they can because we know the world isn’t going to adapt for them. We do this because we know we are going to die and leave our child behind in a world that won’t love and support them like we do – Flannery, Living on the Spectrum: The Connor Chronicles

Our children are just a constant source of sadness: Our autistic children bring us joy just as our typical children do.  Sometimes more – in ways you can’t understand until it happens to you. The fears are that much greater as well; that part is true.  But we are just as in love with and just as proud of our children as humanly possible.  Quite frankly, some of our kids manage to be amazing with far more challenges than typical children.  So more pride comes with this territory too. – Leigh Merryday, Flappiness Is

We believe “Acceptance” and “Tolerance” are enough: Most of us “accept” that we have to pay taxes and some of us “tolerate” our in-laws, so we know our sons and daughters deserve far better than that. We won’t rest until our loved ones on the spectrum attain something far more important: Respect and Equality. – Jo

We adore pity: Pity is something bestowed upon us in heaping servings on an almost daily basis. I can’t count the number of times I’ve gotten “that” look from someone while out with my autistic son. It’s a look that says, “Poor you!” and “How do you manage?” mixed with a little bit of “Better you than me.” There is nothing, or no one to pity here. We love our children for who they are, and even on the most challenging days, we are so grateful they are in our lives, tugging on our heart strings and enriching the world around them. The only folks who should be pitied are those drowning in ignorance towards individuals on the spectrum. – Jo

We are prejudiced against autistic adults: Our children will be autistic adults some day. It’s true that our lives have been different, but our differences do not automatically make us enemies. We may not understand everything, but if you try to teach us, we want to learn. We want to work together as a community, regardless of circumstance or neurology, to make this world a better place for all adults and children on the spectrum. -Jill Smo, Yeah. Good Times.

We write and/or speak about autism only from a parent’s point-of-view: Although we may blog about raising an autistic child, many parents are on the spectrum themselves and have their own frame of reference about certain issues.  – Flannery, Living on the Spectrum: The Connor Chronicles

We don’t understand the wrongs perpetrated upon autistic adults by the autism advocacy community: We do realize that  autistic adults have been infantilized by the advocacy community.  We are aware that their insights and opinions were not and are not sought as they should be.  You wouldn’t hold a convention about diabetes without diabetics.  Yet, for a long time, that was what was done to autistic adults.  No, we don’t want to silence them.  Many of our children have already been silenced.  Self-advocate autistic adults represent hope for our children.  We want their voices.  It’s simply that we need to have a voice ourselves, and it hurts when it is suggested that we should not.        - Leigh Merryday, Flappiness Is

We get an abundance of services and supports for our children provided by the state or government: Most of us don’t qualify for assistance because of our incomes. And most of us have insurance that falls woefully short of covering what our children need. I once broke down crying in my local Walmart parking lot because my son’s medications cost over $300 out of pocket. Most of us are struggling financially to provide everything our kids need. If you are middle class with a child with special needs, you’ll likely go bankrupt. -Flannery, Living on the Spectrum: The Connor Chronicles

Saying a situation we are facing with our child is difficult is derogatory to our kids: If we say something is hard, difficult, or challenging as an autism parent, it doesn’t automatically mean something bad, negative, or derogatory about our kids. Running a marathon is hard, but thousands of people like me have taken on that challenge because why we do it is more important than whatever is hard about it. If you aren’t willing to push hard enough for your child that it does hurt like hell, then wouldn’t that be an infinitely greater parental sin than saying “this is hard”? - Tim Tucker, Both Hands and a Flashlight

We have endless knowledge about autism:  People go to school for many years to study developmental disabilities. All we did was give birth. Somehow, without the benefit of all those years of education and clinical work, we are supposed to do this autism parenting thing flawlessly and without support. Flannery, Living on the Spectrum: The Connor Chronicles

We are infantilizing autism when we talk about our own children. We have a right to voice our own stories, what we are going through. We do not do this to speak over the adults with autism; we do it to add the voices of our children who cannot yet speak for themselves. –Lexi Sweatpants, Mostly True Stuff

We don’t care if our autistic children upset your dinner: Actually, many of us desperately wish our child would stop having a meltdown too.  We don’t want to ruin anyone’s well-earned evening out.  But we need an evening out as well.  And so do our kids.  Please remember that when you feel frustrated.  The world is here for all of us to access. - Leigh Merryday, Flappiness Is

When we disagree with an advocate’s idea, or worldview, we are trying to silence the advocate: Different perspectives, experiences, and (let’s face it) our nervous systems are our personal arbiters of truth. How can we expect any given two people to align perfectly? To come to any understanding, or even pinpoint the line where two opinions diverge, takes principled civility in discussion. Valuable parenting insights can conceivably come from a person without children, so can a neurotypical person offer any valuable insights to someone with a neurological disability? It is said that one must “consider the source”. That might be true when considering the motives of an advertising company trying to sell you a product, but an argument shouldn’t lose credibility solely depending on who makes the argument. We need to learn how to properly decouple our arguments from our selves, so that when we make an argument, an attack on that argument isn’t seen as a personal attack on us. Conversely, a personal attack does nothing to further or disprove the argument, so it can be cast off.
-Bil Hooper, Pancakes Gone Awry

We totally know what we’re doing at all times: AHAHAHAHAHAHAHAHAHAAHAH! Seriously though, we make mistakes, and most of us aren’t afraid to admit it. The hope is that we learn from them and when we know better, we do better. On any given day we may change our minds a thousand times as it relates to how we approach a situation involving our autistic child, crossing our fingers and praying along the way that we don’t screw things up and always do right by our kids.  -Jo

But the one thing you can be sure we will never change our minds about is how much we love and treasure our children, who grace our lives with their unconditional love, fill our hearts with joy, and add meaning to our lives in a way we never thought possible.

And that’s no myth.

 

 

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{ 17 comments… read them below or add one }

Allie February 25, 2013 at 1:50 pm

Great list! My personal favorite: “We don’t care if our autistic children upset your dinner”. If I had a dime for every nasty look and/or comment….

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Shannon February 25, 2013 at 2:20 pm

Wonderful list!! I love “We have special powers…” I get that one ALL the time.
“Oh, you have a special needs daughter? You are amazing!” Ummmm…okay? Thanks? Do I know you? When did having a special needs child = amazing mom? I mess up all the time. I just try and learn from it, learn from my daughter, and do better the next time. I’m the same as lots of other moms, I just love my girl and want to do a good job.

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Jim W February 25, 2013 at 3:28 pm

this post turned out really spectacularly.

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Jo February 25, 2013 at 5:51 pm

Thank you! And it’s all because of the amazing contributors!=)

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Steph February 25, 2013 at 4:02 pm

I agree with Jim!!

Also,
Dear everyone I know: I AM NOT A SAINT! And I am not strong at all. I don’t have a choice. I just am.

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Flannery February 25, 2013 at 5:38 pm

This came together really nicely, Jo. Thanks for letting me take part in it!

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jillsmo February 25, 2013 at 6:15 pm

YAY Jo!!

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Annie February 25, 2013 at 6:52 pm

“I don’t know how you do it.” – says everyone who finds out I’m a single mom of an ASD kid.

I have no choice and it’s really not that bad. But thanks.

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Jessica February 25, 2013 at 7:14 pm

This is such a great list, love all of you guys!

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Kim February 25, 2013 at 8:04 pm

This was very well written by all and covered a lot of things we all struggle with or feel at some point and time. The part about the state paying for everything and us actually going broke really hits home right now. As well as so many others. My biggest personal pet-pieve is “How do you do it ? I could never do that !” . What’s my other choice ?? Vannah please show us door number 2 ! they look at you like you are going to rip open your shirt and show them your S on your chest. In our case ASD ! I love my son and this is my life, so I deal with it, I’m not amazing and you don’t know what I would do for a day off work and a nap !! thanks again for sharing this ! :)

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Diane February 26, 2013 at 12:35 am

Great post Jo! You have such a way with words. <3

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Jo February 26, 2013 at 4:15 pm

Thank you so much Diane!

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Sharon February 26, 2013 at 3:47 am

Awesome

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Stimey February 26, 2013 at 4:06 pm

This is a fantastic post. Well done!

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Jo February 26, 2013 at 4:15 pm

Thank you so much! I had a great group of contributors!

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Shannon February 26, 2013 at 6:12 pm

This is amazing! I love it!

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nikki February 28, 2013 at 10:54 am

woah, great post, will have to read all the linked blogs too.. thanks for putting that together! :-) I had written about some of the surprisingly negative dynamics in the autism “community” ( more communities.. ) this week. you are obviously well connected, that’s quite a complete list of misconceptions and bad impressions and probably some answers to my own questions too, thanks a lot!

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