Things I Need to Say

I have been thinking about writing this post for a while but I always stopped myself. The main reason is that I wanted to be gentle with my words, even though it hurts to write.

I realized that the only way to address this issue is with blunt honesty. So, if you are a parent of an autistic child who wants a “cure” for autism; if you are a parent of an autistic child and you think Autistic Activists are “not like my child”; if you cannot distinguish between what autism is and isn’t:

You will not like what I have to say.

I have written a lot about my life and I have written about my many disabilities. In short:

I am Autistic. A proud one.

I like my neurology.

I have intractable epilepsy.

I have cerebral palsy.

I have sensory processing issues.

I have dyspraxia/apraxia

I have GI problems.

I am non-speaking.

I can’t feed myself.

I can’t bathe myself.

I could list a few more but I will stop there.

What I want to say is that some of the disabilities on that list are likely part of my Autistic self. Others are definitely not.

Being non-speaking is an autistic trait but I can communicate. Speech is not the only way a person can be understood. I have a friend who only found a way to be understood by the majority as an adult. Today she is applying for college.

Apraxia and dyspraxia can be part of autism or cerebral palsy. It does not cause suffering.

Sensory processing is probably part of autism. But I have headphones and I don’t feel obligated to be around too many people or to hug them. I am fine with that. I might come near a meltdown but I have learned to be as prepared as I can be. Sometimes I do meltdown, but that’s life.

I can find supports and accommodations for the things that are part of autism. It is important to fight for them and sometimes it is a hard fight with an unpleasant system. That’s where the social majority can help or hinder. The availability of supports is not MY disability. But curing autism in order to “solve” these, sometimes annoying things would eliminate who I am. And THAT would be tragic.

The rest of the list? NOT autism.

I will be very happy if a cure for epilepsy is found. And I will still be Autistic.

It would be great if there were better treatments for GI problems. My neurotypical friend and her neurotypical brother would be happy to get theirs under control too. GI problems are NOT autism.

Now is the time for the blunt honesty part.

Some parents refuse to acknowledge all I just said. They keep parading all the things that are NOT autism as “devastating” symptoms of this “tragedy”. They ignore their children’s feelings and humanity. They refuse to see any ability. They understand murderers’ motives to kill an Autistic person. After all, “it is so difficult for the families!” (that was sarcasm. Yes, I can be sarcastic too)

They insist they love their children.

If they do, they should stop the rhetoric.

If they do, they should show this love more than they show self-pity.

Because self-pity is ugly and they should stop the search for martyrdom at the expense of their children’s dignity.

Autism does present challenges (everyone has challenges. This is not a privilege of autistics) but these are our challenges. We hope parents will support us instead of feeling sorry for the “disruption” we cause. We are not causing disruption. You are the ones with biased views. And parents do get overwhelmed and support is needed for them too. But not at the expense of denigrating what is an important and inseparable part of the child.

Parents who blame autism for the ills in their lives are blaming their children. Autistic children don’t know how to not be autistic. All they see and hear and feel is: “I make my family miserable”. And we don’t understand why, since we are who we are. Parents should not make their children feel this way. Not if they practice love.

Before someone finds more “awful” autistic “problems”, let me say this:

Incontinence is not autism either.

Meltdowns always have a trigger.

Self-injurious behaviors are bad and many of us know that well. Talk to us. Search for better approaches than simply saying how terrible living with your child can be.

Many so-called “severe” autistics have been writing about personal experience, some without censure. Read what they are saying. The things you say we don’t do, but your child does? Some of us do. Yes, THAT thing.

If you still want to advertise your child’s challenges as autism even when you know they are not; if you prefer to feel sorry for yourself, instead of seeing the facts and trying a constructive approach, like many parents do, I have no hope for you and I do feel sorry for your child. She deserves better possibilities in life. You are NOT advocating for your child, you are paving a way of pity and rejection for her.

I have a very good idea of how your child feels because I was once that child. But my parents realized that my life was more important than their self-pity, what you call “suffering”, or “family upheaval”. They were realistic about my needs but they also fought to get the supports I needed to put me in a path to the life I have today.

I still am Autistic and in many ways I am like your child. I have the independent life I am able to have. I have many friends and despite this ableist world, I am an integral part of humanity, even when I have to fight for my place – and I do.

My parents, now only my father, were not like you and that’s a big difference. I am happy and so is my father. He is also truly proud of me, the Autistic, disabled, sometimes complicated and impaired me.

One last thing and more blunt honesty:

If you are a parent who refuses to vaccinate your child; if you use chelation, bleach enemas in your child; if you pick and choose the moments your child is having a meltdown to berate autism using your child’s image or video:

This is abuse.

If you think that your child’s life is not really worth living and the words “mercy killing” crosses your mind as a “solution”:

You don’t deserve to parent another human being.


Amy Sequenzia, AWN Contributing Writer  About the Author, Amy Sequenzia.