Sometimes my Heart Hurts for your Child

Ever since this blog started getting popular, I’ve had the opportunity and privilege to be able to become a resource for parents with autistic children. It makes me so happy that I can have this sort of influence, because I know that the more a parent understands about autism and the more positivity they have when viewing autism the better their autistic child’s life will be. Autistic people are my people. I care about other autistic people, and so I care about educating the people that impact the lives of autistic people.

A URL bar with http://www. typed into it. Image licensed for fair use.

I’ve found myself in a lot of circles with parents of autistic children. Plenty of autism parenting blogs follow this blog. Then there’s Twitter and Facebook groups, plus the flow of emails I get and do my best to respond to. And to be honest, a lot of the time I love reading about these parents’ autistic kids, even if my preferred and primary reading about autism comes from autistic people. I read about these kids’ journeys because I care deeply about other autistic people and it makes me happy to hear about their beautiful lives. Many of their experiences are also my experiences. They do the same things I do and think the same way I do and have gone through the same things I have.

However, no matter where I read, there will inevitably be something from a long list of things that will come up and make me sad for that child. Almost always there are good parents involved that truly love their kids and are doing a lot of things right, but are missing something incredibly crucial. I’d like to address this post to all parents of autistic children generally. Not all of these will apply to everyone, or even most people. I write this not to criticize, but rather to help you better understand what you can do to better support your kid to be the best and happiest autistic person they can be.

My heart hurts for your child when:

• You say they can’t communicate, yet I know exactly what they’re trying to communicate.

As the mantra goes, behavior is communication. Yet so often I see parents complain that their non-speaking child can not communicate, when I see them trying to communicate with their actions. It makes me wish more parents would take an autistic perspective and listen to their child because I guarantee you it’s one of the most frustrating things in the world to not be able to get people to understand you.

• You say they have the “mind of a toddler” when I see their intelligence.

This phrase among others, such as “my daughter is 18, but is mentally 4” make me sad, because I know it’s not necessarily true. Not to say that there aren’t intellectually disabled autistic people, but intellectual disability is highly over-diagnosed in autistics because IQ tests rely on the person communicating typically and being able to regulate their body in a typical way. Some people make the assumption that because someone has trouble communicating that they therefore must not have any new information to share and be unintelligent. But this isn’t the case. Autistic people, of all communicative abilities, know more than we say and understand more than we can articulate on the fly. Or they’ll say “well his favorite show is Sesame Street, so clearly he’s only a five-year-old.” But I bet there are quite a few adults and older kids and teens who like kids shows. And when a non-autistic person likes a show for little kids it’s seen as endearing, but when an autistic person does it’s evidence that they’re a toddler in an adult body. It’s a double standard.

• You view everything through a lens of behaviorism.

Just because it’s different doesn’t mean it’s wrong. Autistic people experience the world in our own unique ways. A young girl with a white tank top and long brown hair in pigtails stands in a field with her arms outstretched behind her, closing her eyes and her head tilted towards the sky. She is wearing headphones. 

Not everything is about behavior. Yet some people seem to only view their children as a mass of “behaviors” to be refined. The thing is though, autism is not a collection of behaviors. It’s not a behavioral disorder. Autism is a neurology, a specific way the brain is wired. It’s a way of seeing the world. A way of thinking. A way of moving. So many parents, teachers, and therapists don’t understand that there’s a reason why autistic people do things, and that asking themselves why something is occurring rather than defaulting to “how can I change this behavior” is a better course of action. It makes my heart hurt for your child when you take a mindset of “autistic = bad” and spend hours and hours per week in intensive therapies to make them appear less autistic, at best wasting precious time of childhood and at worst causing long lasting psychological damage, all for the purposes of “extinguishing” these apparently “bad” autistic behaviors rather than teaching actually valuable skills and coping mechanisms. It makes my heart hurt for your child when you don’t take their perspective, thinking “if I were doing this my motive would be…” rather than trying to understand them. This leads many to punish meltdowns out of the false assumption that they’re attention seeking behavior, or assume that non-speaking means non-thinking.

• You parrot myths about autism

I have seen it written on these autism parenting blogs things like “autistic people lack empathy” or “autistic people have no imagination” or “autistic people have no theory of mind” and even “autistic people don’t feel emotions.”

And it’s frustrating to know they think this about their child and other autistics because they’re all totally wrong. Any autistic person knows this. Many autistic people could tell you this, and we’ve been saying that these myths are wrong for decades now, and yet nobody will listen. The ironic part is, though, that the opposite of these myths is actually true. Autistic people feel emotions and empathy as being more intense. Autistic people I’ve found to be typically more imaginative, and outside the box thinkers. And, no, autistic people do not lack theory of mind, I assure you we are aware that other people have minds that are distinct from our own.

The difference is in expression. We express emotions and empathy in different ways, but this doesn’t mean we don’t have them. Nor does different mean broken. Autistic kids may not have tea parties with their stuffed animals, but this doesn’t mean they have no imagination. Lining up toy cars may seem mindless to you, but it’s not a display of a lack of imagination. It’s different. But different does not mean wrong.

• You make doomsday predictions about your child’s future

I already wrote a post about this. (Click Here) There’s also a great post from Luna Rose at the fantastic Autistic Dreams blog on this subject (Click Here)

But the gist is, parents often make grand doomsday predictions about their young autistic children. “My child will never drive a car. They will never speak. They will never get a job, or fall in love, or live independently.” And they say this about their three-year-old.

I’m sorry, who has the crystal ball? How can you possibly make this prediction about your child? Autistic children, like all children, grow and develop throughout their lives. There’s no telling what they will or will not do. My parents were told, by multiple school counselors, and therapists and social workers, that I would never graduate from high school. And yet here I am, an honors student in 12th grade currently applying to colleges. My heart hurts for your child when you limit the potential of your child.

• I see your child working so desperately against their uncontrollable body to communicate with you but you don’t know how to listen.

This goes back to taking the autistic perspective. Not all communication comes in neurotypical form. Behavior is communication. Listen to what your child is saying beyond just words. Consult autistic adults and bloggers if you need help understanding your child. Because the chances are we can help you speak autistic.

• I see the sensory pain your child is in, but you don’t recognize it

So often I see kids who are having a hard time making it day to day, and I can almost guarantee the issue is their sensory input is not regulated. Their schedules and environments are not suiting their neurologies. The problem is so obvious to me, and yet the parents are completely oblivious to it. They say “little Johnny has a meltdown every morning while I put his clothes on him. It’s so haaaaaaaard being an autism parent,” completely neglecting the fact that maybe those clothes you’re making him wear feel like cactus spikes pressing against his skin? Or that you touching him is causing overload? Or that that fluorescent light in his room literally hurts to look at?

• You describe your child as a mystery and long to know what their world is like, when I know exactly what their world is like.

So many describe autistic people as mysteries. Parents say they long to know what’s going on inside their autistic child’s head, that they could understand.

Well, I have good news: there is a way you can see your child’s perspective! You ask other autistic people! It seems so obvious, yet so many neglect this. Despite the fact that the autism spectrum is broad, I am convinced that there really isn’t a fundamental difference between different autistic people. I can relate to every autistic person I have ever met on an autistic level, even the ones who superficially “aren’t like” me. I find my autistic experiences bring the same as their autistic experiences, and I can use the fact that I’m also autistic to help you understand your child. Now, many parents do listen to other autistics, and to all those that do a sincere thank you.

A black and white close up photo of three hands being held together.

Yet so many parents don’t want to listen to autistic people. They may read something written by an autistic, momentarily think “wow, that was profound, I’m glad I read that,” and then move on prioritizing non-autistic voices on autism over those who literally live autism. Or, at worst, they get belligerent. “Not like my child” is the commonly repeated phrase. But the thing is, we are like your child. That doesn’t mean everyone is a carbon copy clone of your kid, or that we have all the same struggles, or all the same co-occurring conditions, or are equally as disabled. But we are both autistic. And like I said, there’s not a fundamental difference between other people’s autism. We do understand your child from firsthand experience. Plus, many of us literally were just like your child. The non-speaking kid who has a meltdown every time he hears a hairdryer and needs prompting and constant aid to do the basic things? For many of us autistic adults, we were exactly like that at that age. We lived exactly that. So give us the benefit of the doubt and let other autistic people help you understand your autistic child.

• You share intimate and private details about your child without obtaining their consent.

There has been a trend by which people detail very private and personal information about their autistic children publicly online. They film meltdowns and post the videos. They post their child’s toileting habits and potty charts. They share all of their diagnoses and medical histories. All without any semblance of an OK from their child. And it needs to stop.

Can’t we have some semblance of empathy? Would you want someone to post such details about you on the internet, open for everyone from friends to future dates to future employers to see? No? Then why are you posting this about your autistic kids? Some will defend this practice, saying it’s for “awareness,” and others unapologetically do it to try to gain sympathy for how “hard” it is to raise an autistic child. I don’t believe either of those are anywhere close to valid reasons to expose your child like that, but either way, intent does not erase harm.

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I understand that this post may be somewhat controversial with a minority of my blog followers, and I understand this post probably won’t get thousands of shares on Facebook. But that’s OK. All of this has been weighing on my mind since I went through and read a few parent blogs, and this blog acts as a way for me to dump my thoughts on things. I haven’t written anything in a while, both because I was working on this and because the holidays are a busy and stressful time. This post sets a new word count record for blog posts here.

Hopefully, though, if you’ve done some of the things I’ve written here, you don’t take this as a personal attack, but rather as guidance on how to do better. I always assume that most people have good intentions, and I’m sure you do. I only want to help.

Again, all of the things here won’t apply to most people. But I just want to raise awareness of some of the toxic, even if subconsciously so, things that go on in the “autism parent blogging” community that my blog has as a big demographic.