Month: November 2018

We’re Listening

Content note: this is a very emotional post and talks about some distressing things. 

I’m in several online autism-centered parent groups.
This is mainly so I can offer support and also learn – as I like learning about resources around to help advise families and friends.

Want to know a secret?
I hate it.

You know how sometimes people warm you to not read the comments?
It’s like that, but worse.

I understand that it’s venting, letting out some sort of pent-up rage into the void.

But – it’s very painful.

I see the posts about young children, and their parents calling them evil.

My blood pressure skyrockets and my chest hurts every time I have to read flyers shared that say “Talk About Curing Autism” or a fundraiser for the dreaded Autism Speaks. I worry as I read about how they use unsafe practices to “cure” the autism. The fad diets, the bleach and chelation, the intensive “quiet hands” ABA torture. A 40 hour work week is rough on most adults; why do it to a child?

I watch as an entire comment thread agrees together that autistic adults belong in group homes, that autistic children will never amount to anything, that autistic children should not be allowed to have an organ donation or that their deaths would “be a mercy.” I see people say that their child’s distress is “such an embarrassment” or that their child would be better off institutionalized and never allowed a voice.

I swallow my stress as I read post after post about how someone “can’t deal with this child anymore” and how “they just want to give them away.” As someone who grew up as a ward of the court, these comments sting too hard for me.

I cry because someone literally says they hate autism, and would rather have a dead child. Straight up posting “I would rather have a dead kid than this” and “I wish my kid was dead.”

Considering I just lost my autistic baby brother – don’t even try to pull that one on me.

Don’t you even dare.

 


I try to keep myself composed, because if I told people how I felt, I would definitely be banned. And even when I speak up politely, I often get shut down.

“You’re not really autistic.”

“You’re too high functioning.”

“You don’t know what it’s like!”

 

A few fun facts:

I am autistic.

I am not a functioning label.

I know exactly what it’s like, both inside and out.


 

I get told “you’ve never had a toy thrown at your head.”

I remember that I was given brain injury that has wreaked havoc on my nervous system and cognition. I have had many things thrown at my head, bitten, scratched, punched, and worse.
And yet, the worst abuse I have ever received was from neurotypicals. I have no anger nor bitterness toward a child who is struggling to comprehend and tame strong emotions.

I am lectured with “you don’t know what it’s like to worry about your child’s future.”

I remember crying alone hysterically the day my autistic brother went to preschool, because I was scared he would be bullied like I was.

I didn’t fear for me, because I figured I would die before I grew up anyway. Now that I’ve somehow survived, I am terrified.

I’m not sure what happens next. I don’t know where I will be living this time next year. I don’t know how I’m going to keep afloat. And you’ll find that most of us autistics are terrified, too.

I listen and read every comment.

“Autism is a disease. Autism is undignified. Autism is disgusting. We need to fight and destroy autism.”

I replace each instance of Autism with a name, whether it be my own or my loved ones. I would type it out, but I do not want to.

“My child is a disease. My child is undignified. My child is disgusting. We need to fight and destroy my child.”

How cruel does that sound?

I’m so used to being called worthless and broken. Our community hears this constantly in professional and parent circles.

 

Even in the conference I spoke at in April, I broke down crying as I listened to the more high-profile guests.

To them, we are a burden. We are missing pieces of ourselves and are too broken. We are deficits in society. Byproducts of genetic disease or environmental toxins, things I overheard constantly during the conference. Books on the counter about the “epidemic” and “problem children.”

All around me were puzzle pieces, anger, people all shouting about the horrible autism epidemic.

My meltdown I had when I got home had nothing to do with public speaking.

It had everything to do with the fact that I felt unwanted and unwelcome at an event that was all about my shared neurology. My friends, my brothers, my loved ones, my sweet fiancé – we are told so much that we are broken. We have no empathy or emotion. We are not wanted, not desired, not needed.

And people wonder why autistics have higher rates of trauma and mental illness?

I know autism is hard.

I am in that odd and awkward perspective, where I am the autistic person, love an autistic child, work with autistic people, and am trying to enter the professional word of special education.

I am not a stranger to the “negatives” of autism – not even the slightest. Yet, I don’t see a child with “deficits” or as a “side effect.”

I see a child who needs supports, love, acceptance, and encouragement. All people, regardless of ability, deserve kindness and to be respected as human beings.

But I can’t say that in these groups – and that’s the real shameful disgrace.

Autistic children, teens, adults – all of us are listening.

 

But are you listening to us?

Anger

Content note for filicide and violence against people with disabilities.

If I have to read about one more parent who says that they wish their child was dead, I will scream. Straight up, I have read “I wish I could kill my child” and “I would rather my kid just be dead already than have autism.”

If I see another post saying that “people with disabilities should be euthanized” and “disabled kids shouldn’t be allowed to have organ transplants,” I will lose it.

Seriously. This is what I keep reading lately. I’m not even exaggerating here.

You know what? Let’s have a little talk first.

Let me tell you what the death of a child is like – from the perspective of this grieving older sister. Let’s have a look at a personal hell.

It’s seeing a little child lying on a cold table, covered with a blanket and a stuffed toy tucked into his arm. It’s looking at all the beloved toys of a kid placed meticulously around a funeral home display – knowing that the child will never touch them again.

It’s reading the little notes from other first graders who are so heartbroken that their friend is gone, with one saying “I wish he didn’t die.” It’s the little drawings of angels frowning and stick figures crying, surrounded by the crayon scribbles of a child who cannot yet explain their grief in words.

It’s watching your mother read to your baby brother’s lifeless body, breaking down into tears every other sentence. It’s watching your other little brother so confused and struggling to comprehend why a child is gone. It’s knowing that your little sister herself never even got to say goodbye to him either, and that breaks your heart just as much.

It’s listening to your grandmother when she first breaks the news to you at seven in the morning, and replaying the absolute pain and distress in her voice for weeks in your head. It’s watching her grieve that she’ll never get to spoil her grandchild ever again.

It’s coming back to school and work, and crying at the mere thought of him. It’s staying up all night because you have to find that home video of you and the child playing together in the living room. It’s that soul crushing realization that you will never find it, and it’s gone.  It’s that one little memory that creeps in, and renders you motionless, grief-stricken, and heartbroken for hours.

You really want to go here?

Would you like to sit in during a Disability Day of Mourning vigil? Would you enjoy sitting there as each and every single name is called out? Do you like the slideshow of the faces of small children, young adults, older individuals whose lives were violently and tragically taken? Can you sit through this and still justify their murders?

Let me clear this up: filicide is not some “mercy killing”. It’s pure evil and cold-blooded murder.

I would give anything to have my baby brother back. Don’t come to me with any justification of his death or any other disabled person’s death.

I’m so tired. This toxic culture of hatred makes me so sick, and I can’t understand it.

And, of course, I’m angry.

Honestly, I’m seething.


 

 

Is parenting hard? Yes.

Does that give you an excuse to harm your child? Never in a million years.

If you harm a child, you never deserved them in the first place.