Fear is Not a Moral Failing for the Parents of Autistic Children

Fear is not a moral failing. That is the most important thing I need to say, right up front. Autistic children are often afraid of new experiences, loud noises, or uncomfortable situations. The parents of autistic children are often afraid of how they will be perceived by others. They are afraid of their child never being able to care for themselves as adults. They are afraid of all sorts of things, just like other parents, but even more so. This is not a moral failing. Fear is an emotion. And it is perfectly normal and acceptable.

This last week two articles appeared in my Facebook newsfeed, each dealing with the feelings of a parent of an autistic child. The reactions to them were as predictable as Republicans claiming a Snopes article is fake news. You would think that a parent could express their pain, their concerns, and their frustrations without being attacked by the online community. If you think that, you haven't been hanging out on social media much these days. These days, admitting that autism can be a serious disability that adds considerable burdens on the family of autistic children is tantamount to throwing rotten tomatoes at every autistic person online. Very high functioning adults, many of them diagnosed with autism, will swarm like media locusts to attack the parent, and anyone who dares empathize with said parent. These folks will take over any conversation to shame and berate we imperfect parents. We are not allowed to say we are afraid our children might be autistic, or to suggest that autism might be handicapping for some people. Look, I get it, you don't like being set aside as different. You don't want to be pigeonholed. Who does? But pretending that autism is a walk in the park is just delusional. If you want to live in denial, that's your right, but you have no right to push that off on everyone else. Nobody has to pretend along with you that it's fun dealing with the frustrations and irritations of autism. Nobody has to pretend that it's not trying for the families of autistic children. And admitting that they are sometimes resentful, upset, or scared to death does not mean they don't love their children, siblings, or grandkids. Perfectly healthy "normal" children can stir up these feelings in their families. Obviously, someone with behavioral challenges is going to do so that much more often. 

Here's the the thing, though. The anti-vaccine movement has given this issue just that much more emotional punch. Ever since Andrew Wakefield and his supporters started their campaign against the MMR vaccine, autism became the reason de jour for not vaccinating your child. Some real fear mongering online and in various social circles about autism has further muddied the waters and left more than a few autistic peeps a bit raw. People speak of "the light going out" in their children's eyes. Normally, that's not how autism manifests. However it can occasionally manifest after a period of seemingly normal development. The child who was developing language at age appropriate intervals, stops speaking and seems to withdraw into themselves. So at least some of these anti-vax parents really did have a child that developed the symptoms of autism around the time they received their vaccines. And that lent a lot of credence to this now debunked hypothesis. But it also increased the number of people living in fear of autism well beyond any reasonable expectation. Around the same time Wakefield was spreading this nonsense, lots of people were being diagnosed with autism for the very first time. It's not that they suddenly developed symptoms. They had them all along. It's that they suddenly met the new diagnostic criteria. The new model for diagnosis was a spectrum. Similar to some other conditions, autism appears to manifest along a wide range of severity, from very mild, almost unnoticeable, to profoundly life altering. Many teens and young adults who had been thought merely "different" or "troubled" were now seen as autistic. This was great, in a way. They now had a diagnosis that made sense, and they could develop treatment and life plans that let them achieve their full potential. Unfortunately, this explosion of diagnostic criteria also meant that suddenly, thousands of people who were highly functioning, competent, and verbal adults were now defined by the same term as was traditionally used to describe only people with much more severe symptoms. And this has not been the purely positive thing so many had hoped. Instead, it's led to a vociferous contingent of online activists who go around telling others that autism is not a disease or medical condition, that it is not something to be feared or regretted, and that parents of autistic children have no right to complain. They are quick to condemn parents who do speak out as "making it all about them". 

These people seem to miss the fact that by attacking these parents for talking about their own experiences, they are in fact making it all about themselves. They don't care. They'll happily type "FUCK THEM!" to anyone who suggests the parent is just feeling overwhelmed and needs support. They frequently tell parents empathizing with the parents of autistic children that they hope their children find new homes away from them. That's what happened to me, when I dared relate my own experiences with my son's cancer and express that my experience with his illness caused me to have greater empathy with the parents of severely autistic children, (and really, any parent of a child with special needs.) Yep, I was told I had no empathy, despite the fact that I had just expressed said empathy in the strongest terms. No, the problem was that I didn't have empathy for them, the high functioning autistic person.

I do, though. You see, what the person who typed that wish directed at me didn't know, and now never will, is that I have been placed on that same spectrum. Yes, Virginia, I too have my little symptomology. But unlike those folks, I'm an old geezer. When I was young, not only were my symptoms not seen as part of any autistic spectrum, but were generally seen as annoying habits and phobias that I needed to "get over". Mostly, I learned to compensate. So, these lovely folks who attacked me and told me my kid was better off without me, assumed I didn't understand them. In reality, they fail to understand parents with real problems. Yes, it is mildly annoying to deal with many of the issues of autism. I used to do this weird lip curl thing. It was humiliating to have it pointed out to me. But you know what? I talked at the usual age. I had no problem expressing my emotions to my mom. Although I don't like being touched, I never freaked out or had a public meltdown because my mom touched my head. I don't have major gastro-intestinal issues. I can bathe and feed and dress myself. I completed a GED and later college. I had trouble making friends, and that was painful for my mom to deal with. She didn't have a clue what to tell me, and I didn't understand why I was weird. But that is as nothing compared to what the parents of children with more profound autistic symptoms face. (I know a couple, but they would probably not appreciate being named here. So, I have to speak in more general terms.)

Children with severe autism are not blessed by the autism fairy. They aren't grateful for their condition. Whether you think autism is a disease or not, it is definitely not just a different kind of normal. Profound autism is painful and life altering. I know one boy who was repeatedly beaten up because he masturbated in public. He just didn't understand what he was doing was unacceptable, and no amount of explaining was going to make him really get it. I knew another who rode everywhere in a child's wagon. It wasn't because it was fun. That was the only way his parents could get him from point a to point b. You see, some autistic children are so withdrawn, they never function normally at all. He didn't walk, talk, or feed himself. He was sort of potty trained. He was fourteen. This boy is not worried about whether we say he is handicapped or differently abled. He is worried that he can't hold his potty in public. He is worried people will touch him. He is worried that his mom will forget his toy that comforts him. If you think having a child you have to roll around in a wagon and who has melt downs at the store because you won't let him lick the glass when he is fourteen, is a mere inconvenience, you are living in a fantasy world. These parents struggle to get through their day. They worry incessantly about how they are going to pay the bills. They worry he will get yet another infection. They worry he will never learn to care for himself, and they will grow old an not be able to care for him. Then they don't know what will happy to their son, whom they love, when they aren't around anymore. Sometimes they grow annoyed with him. They cry, scream, and want to run away. This is not some sort of moral failing. This is exhaustion. This is love. And this is the emotional toll that having a profoundly disabled child takes on a human being. Anyone who thinks that a parent is somehow bad if they admit this is one hell of a burden to deal with, is just not dealing with reality as we know it. Perhaps they've never been so tried.

Often, I think the more able, autistic, young people online are defensive because that anti-vax meme they saw last week really struck a nerve with them. I can understand not wanting to be pigeon-holed. But it's not ok to attack strangers online because you are feeling defensive about something someone else said or did. Now, here's the story I shared that got them so riled up over on Facebook. My son was born with cancer. (I've told this before. I still get a lump in my throat just thinking about it. As I write this, I get a bit teary-eyed. But he's fine, it's ok. He's a grown man.) So, as a child he was diagnosed, eventually, with chondrosarcoma. It's rarish cancer of the cartelidge. In his case, he had a tumor behind one eye and extending back to a point just touching his brain. (It was a different cancer from the one Senator McCain was recently diagnosed with, but in the same position.) This cancerous tumor had some serious effects on his brain development. Both before and after his surgery, he had some long lasting and significant issues. His symptoms were so similar to autism, that he was at one point tentatively diagnosed autistic. I am not completely convinced he is not, in fact, on the spectrum still. But then, then it was bad. Then it was terrible. As an infant, and then as a toddler, he spent months and years in therapy. When he first got out of surgery, I was told that he might never walk or talk again, impossible to say. He had severe visual defects. He didn't make eye contact with me. They tested his vision. One eye worked fine, and he should have tracked, but he wasn't interested in faces. This was a worrying sign. There was more. He needed speech therapy for delayed language skills. He had to have physical and occupational therapy to learn to sit up, then to walk, to feed himself, to handle a crayon. His fine motor coordination is still lacking, all these years later. We worked hard at it, and tried to be creative. His young aunt became his nanny, and she pushed him too. I had the recording for years, that she made of his first word. Not "mommy" or "auntie" nor even "ba-ba". Nope, that recording goes like this... Auntie, "Say light." My son "Light." "Say light."  My son, "Light." Once more she says, "Say light." And then, his first full sentence, at the age of 3 1/2, "I did!" I couldn't believe it. He said a whole sentence. That his first word was "light" was telling. Over the next few years, he put us through hell. He broke nearly every electronic in the house. He would break into his aunt's room and steal her things to break. We changed the locks. He figured them out. He threw everything in my bedroom out the window. He split his lip and knocked his tooth out and blacked his eyes so many times I feared being investigated for child abuse. He would run headlong face first into walls, parked cars, trees. He went on days long crying or laughing jags. He would stay up for 48 hours at a time. His pickiness about eating was arbitrary and strange. He didn't want his hands to get messy, so much so that he would refuse to eat the icing on cake. So, when I say my son had a cancerous tumor, and that leads me to empathize with the parents of autistic children, I hope you can see why. I love my son to death. But he made me want to physically abuse him some days. I cried and begged him to sleep so I could get a few hours rest before going in to work. Did I say I was in the Army during his bratty years? Yep. Five in the morning PT is really hard when you didn't go to sleep until after midnight because your child was screaming. And First Sergeants aren't particularly happy when your neighbor calls to complain about your child crying all day and night. And just try explaining that you have to miss formation again because of yet another appointment. Add to that the cost of all that medical care, and you maybe can start to see where the stress comes in.  So, when I say I can relate to the mom with the child who is profoundly autistic, I mean I have been there, in the trenches, and I can relate to her experience. I do not mean to say cancer and autism are the same thing, but rather, that they can have the same effect on our lives. We don't have the same child, and we won't have exactly the same experiences, but we can empathize with each other in this regard.

And then there's the factor that these online warriors just don't seem to get... fear. That raw emotion every parent who has ever waited up until two in the morning waiting for their teen to come home, or rushed their toddler to the doctor with a jelly bean jammed into their nose experiences. Parents worry about their kids. We worry that they'll never get married or have kids. We worry that they won't get asked to the prom and will be crushed. We worry they won't make friends in their new school. We worry they won't get good enough grades to get into college. We worry we won't have the money to help them out. We worry they don't eat enough vegetables. We worry they will embarrass us at the company picnic. Now add a few extra worries in for those with profound autism, mental retardation, deafness, cerebral palsey, cancer, or any other disabling condition. Now, you have to fear they will be picked on while riding the school bus, and it's a lead pipe cinch they will be. And worse, they probably won't be able to defend themselves. In my son's case, I feared he wouldn't fight back, and I feared he might... and not be able to stop. Because that was the way his particular emotions worked. They were full on, or full off, and nothing in between. We have to fear not being able to pay the therapist's bill, and having to pull our kids out of a program that is finally working. We worry that our kids won't ever learn to feed themselves. We fear that our child will not be able to tell us they just swallowed a bottle of ink and it's burning their throats--because our kids do stuff like that, and they can't communicate as well as those other kids do. We fear we'll lose our jobs, and we fear our kids will never have one. If you judge a parent for fearing their child will never fall in love and get married, you are the one with no empathy. The parent is damned with too much empathy. When you love your child, is when you fear the most. Love and fear are inseparable.

When I was pregnant, my father asked me if I wanted a boy or a girl. I said I didn't care as long as "it" was healthy. This is probably the most common response to that question, and it says something about us humans that it is. People hope their child will be healthy. And sometimes, they aren't. We know this. And knowing all this, parents sometimes fear that their child will have a disability. Some people specifically fear their child will be autistic. That doesn't necessarily mean they'd rather have an abortion, or a dead child. It means they are afraid of a real possibility, no matter how unlikely. It's important to let them know that it doesn't always mean the worst case scenario when a child is born with some disability or other. My son eventually did learn to sleep through the night, mitigate his temper, type out his homework, even drive a car. He is going to college. And though he'll never be good at catching a ball, he holds down a job and is very responsible. This is, unfortunately, not the case for everyone. My son is legally blind in one eye. He might well have been completely blind in both. He learned to speak, but there was no guarantee he would. I have relatives born deaf, blind and one who was  brain damaged. Some children do not get better, grow out of it, or learn to compensate. Some children will need their parent's care for the rest of their lives. Having empathy for their parents does not mean not having empathy for them. And empathy is sorely needed. Why?

Well, lots of reasons, but one in particular comes to mind. You know all those anti-vaccination assholes who make you feel bad about being autistic? Guess who they are going to prey on? That's right, that frightened mom or dad who is expressing concerns about autism on social media. Because they are going to empathize. They are going to agree that the world is scary. And then, then they are going to tell them about just how scary it is, and they think they know why! Ever wonder why some people seem so open to all the scaremongering that anti-vaccination groups spread? Well, one reason is, when you have a child with disability, you feel very isolated. No one understands what you are going through. Doctors don't want to answer some difficult questions. And that can be frustrating too. But if you dare express your fear online, you will be told you are a bad person who does not love their child (or child-to-be) enough. Now you are alone, afraid, and ashamed. And along comes a helpful mommy group who understands what you are going through. They will share their experiences, their pain, and their frustrations. And best of all, they will tell you what caused it all. They have answers. And that's how their ranks grow. If you really, really hate the anti-vax crowd, and you really don't want their numbers to grow, one of the best things you can do is to welcome and accept that frightened mom or dad. You can tell them that autism doesn't always mean the worst possible scenario. More importantly, you can accept that sometimes, just sometimes, it does. And it's ok if they are angry, resentful, scared, frustrated, guilty, lonely, and sad. These are normal, healthy reactions to an unfair situation. It says nothing about you, or your autism. It does not mean they think you are damaged, or diseased. It doesn't even mean they think their child is damaged beyond repair or that they don't love their child. It means they need time and understanding so they can come out the other side. We can help them get through those worst times and find whatever happiness they can. We can help them get to the point where they can love the child they have, and give up the imaginary perfect child in their heads and be ok with that. What child is really perfect anyway? You can't do that if you live in a world of fantasy where autism arrives via fairy and parents never ever lose their tempers or cry or express remorse. It requires you give up thinking of yourself as a victim. And that can be the hardest part of all. It's hard to move beyond the hurts and insults we've experienced to help someone else, but doing it can actually improve our own outlook on life. And every person we help this way, is one more ally in the fight against pseudoscience and prejudice. 

Now a quick word about this language policing that is going on online. Disease. Disease. Disease. It's just a word. It doesn't carry any moral onus. It doesn't mean that you are a freak or irreparable. There are many diseases. I have a thyroid disease. My son had chondrosarcoma. My mom has diabetes. My dad had coronary heart disease. I have Depression. My father was an alcoholic. These are all diseases. Maybe you don't like to think of your autism as your disease.  Maybe you prefer the word condition, or diagnoses, or status. Fine. You can call your diagnosis anything you like, but I would like you to consider a few things about that word that has taken on so much emotional baggage for some people. Please define for me what you think a disease is. I know what I think it is, but I'm more interested in what you think it is.  Then please tell me why it is perfectly acceptable for my son to have a disease, for me to have a disease, for my dad to have a disease, for the kids in the Saint Jude's commercials and on the MDA telethon to have a disease... but not for you to have one? I am very curious why so many people feel that autism being seen as a disease state is a bad thing? What would change about anyone, or their symptoms, or their life, if they had a disease? I know what changed in my life, but again, I'm wondering about your point of view. If everyone is on a spectrum of autism, as is currently described in the literature, then that means everyone falls somewhere in a range of severity of symptom. Obviously, if you are one the milder end, someone else must be at the more extreme end. When you tell people they cannot talk about autism as if it has such extreme symptoms in some cases, what do you think that does for the people who actually are at that other end of the spectrum? Do you think you might be putting them into a dark and ignored place where people pretend they don't exist? How fair is it for you to behave as if you represent all autism or that you can fairly speak for those with no voice?  I won't claim to speak for them. I don't know how they feel about their autism. But I posit that neither do people with milder forms of autism. Those more able people with autism can't speak for their less able compatriots, any more than I can speak for people with glial cell brain cancer or Hashimoto's thyroiditis. I can only speak for me. I personally don't care that my Depression and my hypothyroidism are classed as diseases. What you call these things is frankly the absolute least of my concerns in their regard.