Why? Why? Why?

“We love how Evie is always happy & smiling.”

This is a picture of the note that Evie’s para educator wrote yesterday.

evie note school

Today her note was short.

“Great Day!  So happy all day long!”

This is my Evie.

Full of love.  Full of life.  Full of happy.

This is my child.  And I love her with every corner of my being.

I’ve been labeled as radical–part of a fringe movement.

When did a mother’s love for her child become some sort of unthinkable political statement?

Here’s the thing.  Evie is Autistic.

My love cannot be contained in those tragic little boxes that it is supposed to fit in when you’re the mother of a non-speaking Autistic child.

And I don’t try to confine it.  So it explodes out all over the world.

Just like it has always done.

Because freaking damnit!

Evie deserves more love than I will ever be able to give her.

And I have all of the love.

Just like all parents do.

And poor Evie.

On paper, she looks like a good poster child for the Autism tragedy story.

Non-Speaking.  Insomnia.  Needs full personal care.  Needs 24 hour supervision.

I know that many of you are thinking that Evie should have come with her own melancholy violin soundtrack.  And probably me too.

Because that’s what you’re taught to believe.

But I am here to tell you that all of those Autistic despair ticker points blend into our life.

The hardest part of having an Autistic child, for me, is dealing with other people.

And the fear that grips my soul and makes many of my nights sleepless is that Evelyn is growing up in a world that hates her.

Growing up in a world where her life does not have the same value as your child’s life.

Because Evie is Autistic.  And your child is not.  Real life example, my child could be denied a life saving organ transplant because she is Autistic.  No, that’s very real.  Not made up.  And don’t, for a second, think that doesn’t cross my mind every time we visit her cardiologist.

And how do we get to a place where Autistic people are not considered as worthy of a heart as non-disabled people?

Well I will tell you.  The Autism factory.

Autism Speaks.

Yeah, I know it is the only Autism “charity” that you’ve heard of.

And oh boy do they do a great job of spreading “awareness.”

Please tell me…the co-founder of which other charity would say this about the population they claim to represent?  “Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  ”

Or can you let me know, pretty please, why I shouldn’t be outraged that Autism Speaks churns out videos where a board member talks about wanting to drive their kids off a bridge IN FRONT OF THE CHILD in the name of “awareness”?  And all like it is normal and natural to feel this way.

That’s not awareness.  That’s abusive.  That’s a person teetering on the edge of criminality.  And in no other circumstance would this be acceptable.  Only if you’re the mother of an Autistic child.

And all of the world sees this propaganda–because it is Autism Speaks.  They have what seems like an infinite budget to describe Autistic children as monsters.  As money-sucking burdens to their families.

As completely and utterly worthless.  No I am not being dramatic.  Because you don’t spend gazillions of dollars trying to prevent and cure children that are not Autistic.

And that’s what Autism Speaks spends their money on.  Churning out fear of Autism.  And telling the world that we need to wipe out the existence of these beasts.

And I’m not supposed to be angry to have my child described to the world in this way.  I’m not supposed to rant or use harsh language to describe the fact that this organization is promoting the hatred and bigotry my child will live with every day for the rest of her life unless something changes.

I’m not supposed to be angry that other parents think it is acceptable to KILL their Autistic children.  Never would the majority of the population defend a mother who tries to kill her child….unless that child is an Autistic burden.

It is somehow outrageous that I would say that I have never dreamed about killing my child.  That I don’t fantasize about some non-Autistic version of her.  I’ve been dubbed “sanctimommy” and called a liar for saying that I am not jealous of parents to non-autistic children.

I am quite literally an outcast for loving my child the exact way that she is.  Other parents are expected to love their children without restriction or condition.  My child is Autistic.  I am expected to want to change/cure/prevent/fix her.

I’m not sorry for loving my child.

I’m not sorry that I’m angry.

I’m not sorry that I don’t think my child is a monster.  Or that my life doesn’t look anything like the one that Autism Speaks would like you to believe I lead as the parent of one of those full on Autistic kids.

No.  I will not feel guilty for feeling blessed to have this amazingly perfect specimen of a child as my own.  I will not hide my pride for her.

I will not play nice with the people that seek to diminish her human worth to the point that her life could very well be endangered.

My daughter is perfect.  I want to change the world.  Not my daughter.

This is why I support a complete boycott of Autism Speaks and all of its affiliates.  And I am asking.  Rather begging for you to please take one second out of your life and sign the petition right here.  And if you’re feeling extra kind, like our facebook page.

I’m asking you to do that for Evie.  My laughing happy girl.  I am asking you to do that for me–her adoring mother.  And PS–as the organizer of the petition I will know whether or not you care as I have access to the list of those that sign.  I am only half kidding about the caring part.

23 thoughts on “Why? Why? Why?

  1. Thank you so much for sharing this, Beth. My son, too, is a non-verbal, happy, sweet, smiley little boy. I had to endure a blog post, recently, that was written by the father of an autistic child, who defended the Suzanne Wright piece. He argued that he understood where she was coming from and that she was highlighting the more severe cases of autism, because that was the only way to grab people’s attention and secure future funding. But does the end justify the means? I was on the bus the other day, when my husband bumped into one of his co-workers. We were sitting on the bus, with our son seated beside us. When his colleague approached us, she approached very slowly, very tentatively. She said to my son “It’s okay, I’m a friend. I’ts okay, I’m Daddy’s friend”. Her approach suggested that she somehow fearful of my child, fearful that he might, I don’t know, scream, yell, bite…attack? My son is the most placid, sweet, gentle child imaginable, but because of the fear mongering campaign waged by Suzanne Wright, my son is looked upon with fear and apprehension. To the “Autism Dad” who thinks the ends justifies the means, I beg to differ.

  2. Or can you let me know, pretty please, why I shouldn’t be outraged that Autism Speaks churns out videos where a board member talks about wanting to drive their kids off a bridge IN FRONT OF THE CHILD in the name of “awareness”?

    Yes, exactly. How can they not see that they’re enabling emotional abuse here?

    I really, really hope these people have no idea what feeling guilty for your mere existance is like. What feeling unwanted is like. What feeling unloved is like.

    I hope they have no idea what they’re doing to their children. I sincerely hope they don’t.

    Because the alternative is that they do know how soul-crushing those things are to experience day in, day out, for 18+ years, and are doing it anyway. Which is so vile I lack words to adequately describe it.

    And for their kids: I sincerely hope their kids find people who show them love and acceptance and being wanted. I hope their kids have someone in the family who can provide that to them, be it another parent, or a sibling, or even a member of the extended family. I hope their kids have someone to tell them it’s not their fault, and that they’re not responsible for their parent(s)’s baggage.

    I hope their kids have someone in their corner to help them fight battles for accessibility and to learn advocacy and especially to help them gain recognition as a whole and real person. Recognition they shouldn’t have to fight for, but unfortunately do thanks in part to the actions of people like their parents.

    Most of all: I hope their kids are loved by someone in their daily lives. Growing up unloved by one of my parents was hard for me. I imagine that growing up unloved by anyone in your daily life would be immeasurably worse.

  3. “This is my Evie. Full of love. Full of life. Full of happy. This is my child. And I love her with every corner of my being. I’ve been labeled as radical–part of a fringe movement.”

    What a movement. So wonderful to be such a radical.

  4. I LOVE this post and am grateful I stumbled upon this blog! I have 4 children. My eldest (15) was officially diagnosed with Asperger’s a few years ago, and my youngest (2) has Down syndrome. I’ve been told it’s because I carry a diagnosis of Asperger’s myself that I consider ALL FOUR of my children “normal,” believe each is a blessing, and choose to celebrate who they are rather than mourn who they are not. Not sure how much truth there is to that, but it doesn’t matter. My husband and I wouldn’t trade the life we have with our children for anything.

  5. Posting this on my Facebook page. My niece does not have autism, but she is non-verbal and still not potty trained at age 14 due to another genetic anomaly. She’s just as much a kid as the next “typical” kid.

  6. On paper I look so horrible that in a year where they were reviewing everyone’s disability pensions and people who were blind, dead and quadrapeligic were not exempt I got a nice note from the government that I had been excused after they looked at my file. I really would love to read my file.

    II find my autism to be a challenge but largely because somewhere along the line governments forgot that autistic kids become adults. If you cannot make a phone call yourself and access to other ways of taking on the phone are reserved for the deaf life gets a bit tricky in ways that could easily be fixed but may never be. My current pet peeve as the person who arranged that part of my life quit on 3 seconds notice.

    When I did respite I always looked for happy and if it was not present adjusted things until it was. I have seen very happy kids with very loving parents who tragedy models would say should not have drawn breath. Happy and loving being too scarce on this planet I never have worked out why people make a living proclaiming this.

  7. Right on. My autistic kid is fucking delightful. As are my non-autistic kids. They all have the right to grow up thinking they are perfect just the way they are.

  8. A lady at work has an autistic child and she often talks about him to me. I usually think that autistic children often have special gifts in some way. they are usually very intelligent and creative and can see things that we can’t. We should be embracing these special gifts. I have nothing against autism at all. Everyone has the right to lead a fulfilling life as much as they possibly can and to be happy and feel supported. You do a great job of supporting.

  9. Pingback: Boycott Autism Speaks | Who Am I To Stop It

  10. I have supported your cause! so incredibly honored to do it!! God Bless all of you and this quest!! Very proud mother of an aspie and lucky auntie of a nephew with autism. They have taught me so much and would not be the person I am without them…Happy New Year!! God bless

  11. Evie sounds amazing. I work with teenagers with autism, most of them are non-verbal like Evie and like her they are full of joy and bring joy to me and others around them. I’ve never heard of Autism Speaks (I’m in the UK) but I’ll look into it and then consider signing the petition. I work for a Autism charity and am currently fundraising for them. Thanks for making me aware that I need to do this sensitively. All the best to you and Evie

  12. In reading the portion about ‘melancholy violin soundtrack’, I *heard* (mentally) the sound of a violin – only I rather DOUBT this noise was even close to melancholy. There was a lot of rythmic clapping, almost as if what was happening was a very joyous celebratory dance.

    I might have never been ‘non-verbal’ – I spoke early, and spoke unusually ‘well’ for my age, so much so that I was thought a ‘prodigy’ when I was young. I was ‘mainstreamed’ my entire time at public school. I did well in college (at least, when I was younger).

    I was also ‘very weird’. People hated me (and still do). The health problems that resulted from a lifetime of ‘passing for normal’ as an undiagnosed autist finally resulted in multiple psychatric hospitalizations, years of counselling, becoming ‘more or less unemployable’, and ending up on disability. I’ve had the hardest time imaginable telling people that I’m a LOT more handicapped than I appear to be. They’re not inclined to believe my words – instead, they call me ‘evil’ and worse – like the ‘R’ word.

    I once was, at least in some of the most-important ways, like your daughter. Please, don’t let them (the bad people) ruin her by making her into their ‘puppet’, like was done to me. It’s not fun being like this.

  13. You strike me as someone of the sanguine temperament. This is good because most disability and ally bloggers seem to be melancholic. We need sanguine perspectives. What do you think Evie’s temperament is?

  14. Pingback: Please don’t support Autism $peaks: from an autistic and his community (email sent to a sorority at my school that supports Autism $peaks) | Never Less Than Everything

  15. Pingback: Please Don’t Support Autism $Peaks: From An Autistic And His Community (Email Sent To A Sorority At My School That Supports Autism $Peaks) – Articulate Autistic

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