How do autistic people feel about those who worry their children will be autistic?


Answer by Carrie Cutler:

You want to know how I feel? I've had to edit this three times to take out variations on "fuck you" for people who are upset their child might be normal.

I'd still like to copy+paste the phrase "fuck you" to make up the body of the post. I'm almost certain that repeating it in excess of two hundred times might begin to touch how pissed off this makes me.

I was fucking incandescent with rage when I started to compose this answer.

Now I get to tell a story or two.

I have a cousin who is much less functional than I am. The schools where he was and at that time refused to have much to do with teaching him. Without telling anyone in the family, rather than teach him, they put him in a room by himself, with crayons and a coloring book, and let him color through the fourth grade.

When other kids were learning to count, he was coloring. When other kids were learning to read, he was coloring. When other kids were learning how to do social skills, he was coloring.

His mother and father let his grandmother do most of the childcare, and between caring for my grandfather, one of her sons, and two of her grandchildren, she missed all the signs that he wasn't learning. The family thought he was brain damaged and couldn't learn, and the school constantly sent home paperwork that made it seem like he was in regular classes.

Then the school insisted that he be put on medication, because he was "disruptive".

My grandmother, whose education only ever reached high school in a rural town, believed them and put him on an extraordinarily high dose of ritalin, and on other drugs that made it impossible for him to think. He literally just sat there and drooled. My grandmother's automatic deference to authority and the crushing load of responsibility she had to deal with meant that it took her awhile to rebel.

She finally took him off of it, but the damage was mostly done. He'd missed the critical window for reading, writing and math skills, and learning them became a major struggle for him.

I lived with my grandmother for a year or so, and spent summers with her. During the year I lived with her, he was in high school. To her credit, my grandmother spent hours with him trying to teach him to count change, and to read–around caring for my grandfather (who died during that period of cancer) and uncle, my cousin's father (who was also autistic or something very like it).

She was moderately successful, but it was clear that my cousin was not going to be able to go to college. The family, for the most part, again assumed he was just brain damaged. I think he's smarter than they think he is, but college is more or less out of the question for him–he does not take pleasure in reading or math, nor does he take any pleasure in learning in academic situations.

Instead, he started working almost immediately after high school. He worked on oil rigs, and at various jobs requiring physical labor, even though he suffers a lot of pain from doing so. He, like me, cannot parse social interactions and he is physically clumsy and covered in scars. He gets hazed often on the job. Last I heard, he was managing a fast food restaurant, having worked his way up through the ranks.

He can, as it turns out, do some of the things we think of as being adult activities. Among them, once shown a task, he remembers it.

A few years ago, he did something he's always wanted to do. He married a single mother and got to be a father–he's always wanted to take care of someone else (he's spent most of his life infantilized and he is aware of it, and wanted to be a part of taking care of others.)

He will always need to live around the family, since he has trouble paying bills or budgeting money. He will never go to college, nor get a degree, nor have a high-paying job, nor will he be able to buy a house on his own. He'll inherit my grandmother's house when she dies, but he will take meticulous care of it, the way he does anything he sets himself to do. And he will stay married to that single mother, and be a father to her child, as long as she lets him do so.

His official IQ is very low. If the rural area they had lived in had offered services, if my grandmother had known about the diagnosis of autism earlier, if only the family weren't quite so focused on telling us to just deal with the problems ourselves instead of reaching out to others.

If my cousin had been given the expectation that he could learn, instead of doctors over the years repeating to my grandmother that he was just brain-damaged and there was no hope for him. If only that information had been kept from him.

If only he were less autistic…. He wouldn't be himself.

Who am I to wish him, the him he is now, out of existence?

Who am I to keep infantilizing him as he painstakingly proves that he can do the things adults can do? Is there any duty more adult than stepping in to take care of a child, to provide housing and the support the child's father won't provide?

Sure, I wish he was a little smarter. I wish he'd gotten help. I wish he hadn't been bullied in school.

I wish that the school had actually done something for him instead of pretending to teach him and letting him color.

I wish he were more socially sophisticated, and that he didn't get hurt so often.

I wish we lived in a fucking society that, instead of telling him to be ashamed of himself, offered him support and understanding of his disabilities.

Going to college isn't the part of that list of wishes which would have made him happier or have been most helpful.

I can understand someone wanting their child to have the best life possible. I can understand being afraid for their child, for the bullying that autistic kids often experience, or a school system that does very minimal things for disabled kids.

I can also understand hoping that your child experiences as little pain as possible.

You see, I have a son who is going through the school system now. His IQ doesn't measure well, even though it's clear that's more a matter of him refusing to participate in testing process than it is actual inability to learn. His father tried to get him labelled retarded in the court proceedings for custody, as a part of arguing that I don't care for him properly, and his fucking step-mother made sure he knew about it.

So I make sure he knows he's smart–and woe betide the asshole who suggests otherwise in front of me.

My son has problems at school, and my partner and I are constantly on our toes, dealing with his meltdowns or the vast network of specialists that, at this point in society, are available to him.

Because I am also autistic, and learned to cover my symptoms up for the most part, I know there is what is seen, and what is inside. He may be seen officially to be "dumb" or at least not terribly smart, but that is entirely untrue.

I also know just how much he's going to have to learn to do to accommodate others and to deal with the society we have.

When I figured out that he was also autistic, I had a plethora of emotions. My first emotion was, very bluntly, to hate myself for passing it on. Being autistic is hard, and having to deal with everyone else is a hell of a burden for any child to bear. If it had meant a better life for him, I was willing to put up with a gap between us–with watching my son grow across the divide between those of us with ASD and people without it.

And then I was selfishly happy–my son and I understand each other in a way that wouldn't otherwise be possible, even though the way autism expresses in both of us is radically different. He was slow to acquire language, is slow to read, and does not particularly care for school.

And then I realized that I don't have a crystal ball. I can't predict social adaptations between now and his graduation from high school. I can't predict whether or not he'll be able to bear the burden of that difference, or what sort of world he will grow to adulthood in.

Look, when we have kids, we roll the dice with the genes present–that dice roll could come up any of millions of ways, including children who don't live much past birth or fetuses that are spontaneously aborted.

There's a prevailing sentiment that, in cases when the child is not normal in a way that prevents parents from separating themselves from the child on what's considered the "normal" schedule, perhaps the parents would have been better off if the child had died. Perhaps it is better to have had no child at all than to have had a not-normal child.

Let me just tell you something–my son, when he was born, was born with a hole in his lungs and what they characterized as brain damage from a lack of oxygen during the birthing process. They ended up doing surgery to fix the hole.

He had an allergic reaction to the sedatives for the surgery.

I had to watch him move, then still, then go limp. I had to watch his head loll over the hands of the NICU nurse as they performed CPR, and listen to them muttering "breathe, baby, breathe. Come on."

He turned purple, and then blue, and as the nurses crowded the bed trying to get him to breathe again, I had to watch him die and be revived.

At no point in that process was I thinking, maybe it's better that he dies, because they're telling us he has some sort of brain damage. At no point in that process was I thinking maybe I'd be better off if I didn't have him, since they're saying he may be profoundly damaged.

What I was thinking was please, anything but this. Don't let him die.

I could barely breathe. I stood in the corner, out of the way, gasping for breath with him, clinging to the wall and watching him turn bluer and bluer, until they resuscitated him.

Because people insist on believing that autistic people don't care, the nurses were surprised that I would be so affected by all this. After all, anyone who seems weird must be a bad person somehow, and must not share the same values, or ethics, or must not value human life, or must not be capable of the same depth of emotion and connection that a normal person is.

Can you imagine me, in that moment? Can you imagine what was like to see your son almost die, and to have the nursing staff be astonished that you would even care–after all, you're not really capable of an emotional connection with others and the infant is brain damaged. Neither of you is a great loss, overall.

How good is your self-control?

Is it that good?

I genuinely wanted, for a hot moment, to backhand the entire nursing staff because my verbal contempt could never have been enough to express the core-deep loathing I was experiencing. I was incoherent with rage.

And I did nothing, because anything I could have done would have justified their opinion of me and because everything I do bears the burden of how we see the disabled.

I don't think people realize how fucking offensive they are, and how shallow their love appears to be when they think being like your child and having a normal child are conditions for that love.

My son's autism expresses differently than mine. Reading does not appear to be an interest for him, for the most part. But he is not stupid, nor is he incapable. He is, however, quite stubborn.

Every time I have to deal with professionals, it is with the very justifiable fear that they, in their normality, will judge me, in my lack of it, to be not good enough to be his mother.

It would not matter if he was blind, deaf, and unable to communicate with me in any way involving words. It would not even matter if someone took him from me–he would still be my son. I would still love him and I would wait for him to return to me.

I would love his eyes if they were blind, and his ears if they could not hear, and every millimeter of him no matter how it functions, because it is all his and he is infinitely worth loving.

Don't praise parents for loving their children as if loving their children is exceptional, or a favor they're doing their children if their children are different than they are. And for fuck's sake, don't praise me for loving him. I am not incapable and he is not a burden. My relationship with my son is not about my ego, and parenting is not about looking good to your neighbors.

Having him has been worth it every picosecond of every day, and I say that acknowledging that parenting him is a hard, hard thing, sometimes.

Do I have moments of worry? Yes, absolutely. Do I have moments when I fear for him? All the time.

But I don't have a crystal ball and I'll be damned if I excise the future in the service of being "realistic" about his capabilities. If he can't do something, I won't have to tell him.

Trust me, he'll get that message loud and clear from his environment.

Those of us who are high functioning talk about autism as if it is livable because it fucking well is. Autism is not a death sentence. It is not a horror. It is not the world crashing down around your ears, and being normal doesn't ensure that we would be happier.

Being different is not the worst thing that can happen to you, and I do mean different in the sense of quirky and in the sense of profoundly disabled.

We talk about it that way because people act like being autistic is the worst thing that could happen to their children. We talk about it that way because we grew up hearing what a burden we were, and it made our lives that much harder.

Want to experience genuine shame, not the shit that passes for it when someone is embarrassed of their child or relative melting down in public?

Imagine standing there quietly when someone tells your parent that they're a saint for not killing you–after all, if you're alive and not apparently abused, even though you're defective, your relatives are just too good for this world.

Imagine standing there quietly with a nasty pattern of bruises on your back, legs and ass, and listening to normal people affirm that because you're still breathing, your parents are examples of moral rectitude.

Imagine knowing that if your parents did kill you, it would be understandable because you are defective. Maybe it would be better for everyone to move on from your existence, and now the person congratulating your family for not killing you yet has moved on, because it was simply a natural sort of thing to say in light conversation.

They were doing a morally right thing by sympathizing with my poor family because of that thing they had. No one says a damn thing about it, after the fact, nor even seems to notice it because everyone knows it's right: you are a thing, a burden.

That is what shame feels like–shame and impotent anger, and the genuine horror of knowing that your life is constantly at risk and not a goddamn thing will be done to preserve it.

And now, imagine feeling that every single fucking day of your fucking existence. Shit, I'm considered so high functioning I barely got the damn diagnosis, and I have had to hear these comments. I know for a fucking fact that my life is not considered as important as other people's lives are, and that my value to others is predicated on a desperate daily scrabble to convince them that I'm more or less normal.

I have to live with the fact that people will believe the same of my son and that he will have that same struggle to convince the people around him that his life is important enough to get the same consideration under the law as they do.

The law is only ever as good as the willingness to enforce it, and because we're not convinced the disabled are really worth protecting, it doesn't always get enforced. My cousin is not the only person I know who didn't get the benefit of the ADA.

When it isn't enforced, it's because we think being disabled is a shame, and we treat having disabled children as a shame.

Having a disabled child is not a shame. Being disabled is not a shame.

Those of us who are high functioning talk about autism and the benefits of it because of this. We're not ignorant of people who are less functioning. In fact, chances are also very good that we're related to other people with autism or some sort of learning disorder, and we've had the chance to watch other people with it, as well, and how they were treated.

The diagnosis biases low functioning, to the extent that we understand how it works.

The ability of high functioning people with ASD to function in the social world does not mean that it was not at a terrible cost, nor does it mean that we don't know people who aren't able to do the same magic trick.

And sometimes, it's not a magic trick, it's a fucking miracle.

I don't think any of us are hiding the hideous cost of adaption, nor are we underestimating it. After all, we share it. We may not share adaptation strategies, but we sure as shit share the problems.

It's hard to be autistic, but life is fucking hard all over–I have my complaints, you have yours, any person in any country you like will have their own problems. Feel free to worry about your problems, or the problems of your children–that's completely normal.

However, to paraphrase one of my colleagues on Quora: a child is not a doll, nor a vehicle for your hopes or dreams, nor are they a chance to relive your ambitions.

They are a fucking person of their own. They are not your distaste for autism, nor your worry about it, nor your experience of being around autistic people, nor your embarrassment that they're weird.

They are their own person.

Deal with the situation you have to the best of your ability. If you're normal and your child is not, learn to parent that child, not the one you wish you had.

If people who will become parents want to worry about something, they should worry about not meeting whatever challenges they have based on that genetic dice roll during conception.

Since so much of the fear of having a child with a disorder present in 1% of the population appears to be about people not getting their picture perfect dream of a family, I think they should worry about something else.

I think they should worry that they'll have a perfectly normal child and won't able to love that child or give that child what she/he needs because the picture is more important than the child.

How do autistic people feel about those who worry their children will be autistic?