Congressional Hearing on Autism: My Son is Not a Burden

by Jo on December 1, 2012

Yesterday was an emotional day for the autism community in our country.

Actually, I should say communities; we are not a united bunch by any means, with a myriad of issues dividing us.

But that’s for another post.

Yesterday there was a congressional hearing on autism – the first one in a decade – and just about anyone touched by an ASD one way or another knew about it.

I sat at my computer and watched as a panel – made up of a variety of experts and advocates, including a gentleman on the spectrum – took to their microphones for their allotted five minutes and spoke from the heart about their personal experiences with autism while urging our congress to act on behalf of millions of individuals who are diagnosed and living with this spectrum disorder in America.

We may agree to disagree whether or not everyone on the panel deserved a voice  but the bottom line is that no matter what your personal convictions about autism are, everyone up there was passionate about their individual truth.

That being said, this is not a post about vaccines and this is not a post about genetics.

I am not here to argue the potential causes of autism or whether or not you can cure it or whether or not you should want to.

I’m not here to compare the various degrees of autism and the subjective challenges each individual on the spectrum and their families may face.

There are plenty of blogs addressing those issues, so if that’s what you’re looking for, I urge you to move along.

What I am here to talk about is a word that kept coming up at the hearings yesterday, a word that I’m having significant trouble digesting, especially as it relates to my son with autism.

That word is burden.

Read it again.

Burden.

Now say it out loud.

BURDEN.

Now look at its synonyms:

burden n: affliction, albatross, anxiety, care, clog, encumbrance, grievance, load, millstone, obstruction,
v: bother, encumber, handicap, load, oppress, overload, overwhelm, saddle with, strain, weigh down

Not exactly a word that invokes a lot of warm fuzzies, is it?

Due to the fact that he has no understanding of it’s meaning, my son Andrew didn’t even flinch when this word came up several times during the hearing yesterday.

But I did.

I flinched.

And, I imagine, so did many individuals on the spectrum and the people who love them, who are already well aware that the majority of society sees them as less valuable, less worthy; burdensome.

See, while I think congressional hearings on autism are long overdue and I believe we should be addressing ASD’s on a national level way more often, I’m much more concerned with the way we address and regard autism and the individuals who are diagnosed with an ASD.

Any attempt at bringing attention to autism for the purposes of providing assistance, research, support and services to individuals and their families is diluted when we forget the most fundamental part of the discussion: the individuals themselves.

I have experienced a vast array of emotions as a parent of a child with autism. I have felt paralyzing fear, overwhelming exhaustion, indescribable pride, stubborn hope, unconditional love, lingering loneliness and unrelenting frustration at my lack of ability to help my child in the way I so desperately desire.

But I have never, not once, not even for a nanosecond, felt that my son was a burden.

I try very hard, in my work as an educator of young people, to instill in my students the fact that different is not less. I speak from the heart when I urge them to not only accept individuals with special needs, but to view them as equally valuable human beings.

So you can imagine my despair when I hear people in positions of authority refer to my child as a burden, people who have a large podium and an even larger audience.

I can’t help but think of the long-lasting negative personal and societal ramifications of using a word such as burden to describe an entire population, especially since many within said population are unable to speak up and defend themselves.

Which is why I’m doing it for them.

For them, and for my son Andrew.

Please, choose your words carefully, wisely, compassionately.

Choose your words with a sense of responsibility and respect to those whom you are describing.

Choose your words knowing that they have the power to empower or destroy, that long after they have left your lips, they continue to linger in the hearts of those you have affected.

Choose your words knowing that there’s a real person on the receiving end of them, even if they can’t tell you how that word makes them feel.

Because a conversation about autism, without regard to or inclusion of individuals on the spectrum, isn’t really a conversation at all.

At least, not one worth having.

The minute you look at my child with autism as a burden, the minute he becomes less valuable in your eyes. You can see why this would concern me.

{ 25 comments… read them below or add one }

Niksmom December 1, 2012 at 3:03 am

YES. This. Thank you.

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Stimey December 1, 2012 at 3:06 am

This is awesome. Yes. Exactly. Calling people with autism “burdens” and “terrible situations” and the like is appalling and unhelpful and horrible. Thank you for writing this.

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Alysia December 1, 2012 at 3:12 am

Exactly. Words matter. And I believe this is something we can all come together and agree with. Thank you.

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Suzanne B. December 1, 2012 at 3:30 am

Thanks for sharing this. I completely agree. The “burden” is what people with autism face in trying to communicate with us (the NTs) in ways that we will understand.

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Steve Silberman December 1, 2012 at 3:36 am

Wonderful, thank you. Tweeted!

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Danette December 1, 2012 at 4:05 am

AMEN!!!! I get so frustrated when hear this kind of language – it’s indicative of a mindset that is very concerning and one that I don’t want anyone to have towards my children (or towards anyone for that matter).

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Paula C. Durbin-Westby December 1, 2012 at 4:37 am

Thank you for writing this. My post on the topic is here, and I will add you to my list of related posts. http://paulacdurbinwestbyautisticblog.blogspot.com/2012/11/burden-burden-burden-oversight.html

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Emily Willingham December 1, 2012 at 4:49 am

Bless bless bless. And hellz yes. Thank you.

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Jennie B December 1, 2012 at 5:02 am

Mr. Carley spoke a bit about language. And he noted that most of the people they were talking about could read and could understand what they were saying. I saw people in the background shaking their heads no. And that made me so sad.

I do not know every word my son understands but I am going to assume he understand them all. And I am going to assume that the words we use will affect the way others around him treat him and approach his challenges. Even if he doesn’t understand those words, he sure as hell knows how people treat him, who loves him and believes in him.

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Ib Grace December 1, 2012 at 5:24 am

This is so awesome. I flap my hands wildly in Autistic applause.

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Rachel December 1, 2012 at 5:36 am

Oh – my heart breaks that it was said. And that you heard it.

My mother was in your shoes. Raising a child who had a “disability” in the world’s eyes (I am profoundly deaf). I am sure it was challenging in many ways to go the extra mile to communicate with me – to learn a whole new language. Yet… I was the same child before the hearing loss and she knew that she loved me regardless.

What a beautiful thing you’ve done here in reminding people – with a honest and educating heart – that words are so powerful, but love is stronger.

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Lara Lohne December 1, 2012 at 7:31 am

Just as Mr. Carley attempted to point out, and seemed to get snickers from certain individuals, this is a population that has enough psychological strain as it is, let’s not make it worse by labeling them with words that can only end up destroying their self esteem. My son isn’t a burden, he is a joy, a handful, a hoot and a half and a challenge at times, but he’s not ever been a burden. Taking public transportation to go grocery shopping though, that is a burden. Someone has their priorities a little bit askew. Over on Left Brain Right Brain, there is a link to a form to put in a response to the proceedings on Thursday that will be sent as a fax to the committee chairman. I suggest we all go there and flood their fax machine with responses to just how appalled we all are at the tone the hearing took. As well as the lack of interest in hearing what the gentlemen with the most experience with autism, the autistics themselves, had to say.

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Judith Wilson Burkes December 1, 2012 at 1:04 pm

This is why I have tuned out years ago. Most of the doctors, quacks, quick-fix therapies, prognoses, etc.

My son is also named Andrew. His “diagnosis” has changed over the years, and the one he has now will soon disappear from use. I frankly don’t care.

He is going to live his life, and I am going to stop referring to this diagnosis, because there is such division, disunity and misery surrounding it. He is going to be an animator, a moped driver and an excellent chef. Other than that, I have nothing left to say. I am so sick of people referring to human beings in any other derogatory way!

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Tina Kane December 1, 2012 at 1:28 pm

I believe the disorder is a burden, not the children. I have mod-severe twin 6 year olds. It may be semantics but there are burdensome feelings every day.

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Gina Delbove December 1, 2012 at 3:05 pm

Thank you for your comment. I feel the same way and I don’t think I love my child any less because of it.

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Jo December 1, 2012 at 3:58 pm

Tina, I understand what you are saying and your personal journey with autism belongs to you, and no one can take that away or tell you otherwise. What I’m talking about is the message we send to the rest of world when we stand idly by and allow people to claim that individuals with autism are a burden on society. I spend my days advocating for my child and others like him, trying to gain them solid footing in the world they will someday inherit. It frightens me to no end to think of the public’s perception of Andrew’s value as a fellow human being, especially when the public continues to be told what a burden my child is.

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Restless Hands December 18, 2012 at 1:02 am

Tina–

I’m not even entirely comfortable describing autism itself as a burden, as it covers such a vast array of differences, both easy and hard to accept and accommodate.

Raising children– any children– is challenging, at times agonizingly so. Raising children who function in a way that is out of step with the structure of the society they live in is harder still. I do not claim that, in a perfect society– one with support, compassion, tolerance, sensory-friendly schools and businesses, and adequate disability assistance services– all the struggle would go out of raising your children. But much of it would.

The primary struggle, I believe, is not that your twins are autistic, but that they are autistic in a world that fails to support and accept autism as a valid way of being. Our society makes daily life harder for them, and by extension, for you. Why is this distinction important? Because your children will know, at some point, if they don’t already, that you have negative feelings towards autism– a core part of who they are, that will never change, no matter how they grow and learn and adapt. And that may make them feel as if you love them “in spite of” their autism, rather than unconditionally, as some parents speak of loving their gay children in spite of disliking homosexuality on the whole.

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Denise December 1, 2012 at 1:40 pm

I wondered how that hearing went….thanks for your insights

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Kristen December 1, 2012 at 1:55 pm

Excellent … I cannot think of a thing to add. All the Autism Awareness in the world today is wonderful, until our children are deemed ‘a burden’ to their parents. Then I cringe.

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Kerry @ Climaco Classroom December 1, 2012 at 3:56 pm

I am moved by your honest, poetic words. Thank you.

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Cynthia December 1, 2012 at 8:17 pm

Yes. Thank you for speaking up so eloquently.

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Liz Ditz December 1, 2012 at 8:25 pm

Thank you for writing this, Jo. I hope you will fax it to the committee, so that it is part of the record. You can use this link:

http://www.teamcoelacanth.com/contactform.htm

The committee is receiving comments for the next 5 days.

I am keeping a list of responses, as I often do, and have included yours:

http://lizditz.typepad.com/i_speak_of_dreams/2012/11/historic-congressional-autism-hearings-november-29-2012-1.html

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Lana Sabo December 1, 2012 at 9:51 pm

Yes thank you..I understand that Rep. Mr. Dan Burton was trying to help in his statements every way that he could..Using the terminology of “damaged” children in one of his speeches..I cringed….I understand he was trying to help however, making those kind of statements will ultimately hurt the children, not help them

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Suzanne B. December 2, 2012 at 2:46 am

What’s that saying…with friends like Rep. Dan Burton, who needs enemies? Sorry, I know that is harsh, but it sounds like we still have a lot of work to do as a community of parent (and self) advocates to make sure words like “burden” and “damaged” are no longer considered acceptable when describing our children. Thanks, Liz, for the website. I plan to watch the hearings from start to finish and then offer my observations and concerns.

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Restless Hands December 18, 2012 at 12:52 am

[standing ovation]

Thank you so incredibly much for this post.

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