This is a change of pace. Typically, this blog is aimed at practitioners, with harsh truths and demands to do better. This time though, I want to talk to the caregivers: The parents, the grandparents, the foster families, the relatives of children who have just been discovered to be autistic.
The inspiration came from this short essay by Jim Sinclair: Don’t Mourn for Us, and I would encourage everyone to give it a read.
I wanted to elaborate on it though, as a practitioner who has been working with families for over a decade, and as a non-autistic person who is working to better listen to the autistic people my practices affect. As I described in my article about supporting caregivers, the move to do better is also creating a confusing world for parents, even more so than before. There’s a whirlwind of emotions that then brings on a shower of guilt that caregivers try to shoulder all while trying to support their loved ones.
This is not meant to talk over Jim Sinclair, but rather to expound on his words.
There’s no instruction booklet for having kids, raising kids, supporting kids, and especially for caring for disabled kids. It’s even more complicated when you have a kid you didn’t realize was disabled until they were already in your life. There was no traumatic event or forewarning that this child wouldn’t be as neurotypical as they may have seemed at first. A child comes into your life and you have no reason to expect anything out of the ordinary, until suddenly things aren’t ordinary. There’s no specific advice for how to react to that. What is available is a maelstrom of wildly conflicting information, very little of which is sympathetic to your experience as a caregiver.
To be fair, it isn’t about you. It’s about the autistic child, but that doesn’t mean you can dismiss your own thoughts and feelings.
Take the time for you, so you can make the time for the child who needs you
There’s a tendency in all of us to try to avoid unwanted feelings, especially feelings that make us feel guilty. The hardest thing I’ve had to learn about feelings though, is if you try to ignore them, they just sit there, simmering in the back of your psyche. The longer you lock them away, the more they fester and leak into your unconscious mind. That leak is going to create resentment, and cause you to do things you’re going to regret a lot more than the feelings themselves.
They’re going to come out, they might as well come out in healthy ways.
It never hurts to talk to a qualified mental health counselor, even if you think you’re coping just fine. You can’t just think you’re OK, you need to be OK. The autistic child in your life needs you to be OK, even if that means leaning into some uncomfortable feelings.
Don’t mourn for your child, but acknowledge your feelings and get support to work through them.
It’s not necessarily ableist to have negative feelings when your child is discovered to be autistic. Any sudden, unexpected change is going to throw your mind through a loop. Even if you have nothing but acceptance and positive feelings towards autism, and other disabilities, there’s still a lot of uncertainty that just got thrown into your life: What does your child need? What are the time and financial effects of meeting those needs? How is your routine going to need to change to best accommodate them? What do you need to learn, and how can you go about learning it?
Also, all of that while likely managing some kind of job, social life, basic survival, and other life responsibilities.
It’s a lot, and you’re not going to do yourself any favors by pretending it’s not.
Don’t go it alone.
You are one person with one lifetime of experiences. When you try to answer your questions, you’re going to get bombarded with an entire world’s worth of experiences and lifetimes. Half of that information is going to be in direct conflict with the other half. Some of those sources will tell you you’re a horrible person if you take one route, and the others will tell you you’re a horrible person if you take the other route.
“We’re right, they’re wrong, and if you listen to them, you will fail your child and go down in history as the world’s worst parent.”
Don’t try to sift through this alone. Connect with people you trust. If someone’s advice isn’t sitting well with you, get a second opinion. This goes for experts, trusted friends, and strangers on the internet– especially strangers on the internet, including me. If someone can’t make you understand why you should take their advice, don’t.
Find a small support system and let them help you sift through all of this. Change your mind with new information, take it a few steps at a time.
Be open to new information, and listen to autistics
There are experts out there in development, medicine, behavior, everything, but no one is an expert in autism unless they themselves are autistic. Be open to what autistics have to tell you about their experiences, even if it conflicts with everything else you’ve heard to that point. This is not to say that all autistics are the same, but there is precious insight there that can be invaluable to understanding, connecting with, and advocating for your loved one.
And please, don’t get caught up in “you’re not like my child.” Don’t dismiss someone’s insight because they are able to communicate with advanced spoken language and your child isn’t. It really doesn’t work like that. It’s a spectrum, not a polarity. If your child doesn’t speak, it doesn’t make them radically different from someone who can.
For more advice on respectfully entering and navigating autistic spaces online, read this.
See your child for who they are, not who the could be
The worst thing you can do for a child is to plan their whole lives for them. It’s impossible not to wonder, or even try to predict, what the future will look like for your kid, but it needs to stop there. You cannot make plans based on these predictions and plans. The likelihood that whatever you choose will be just right for the small, individual human in question is extremely low. What is very likely to happen is an environment that sends a message that your child isn’t enough, that who they are is wrong, and that you won’t accept them until they change.
You don’t need to say those words to create the effect. Your intentions and actions will send the message. I’ve seen it. The parents who made the most plans for their kid have the hardest time coping with the autistic person their child actually is. Yes, the child can absolutely tell, and it’s heartbreaking to watch. Often these families don’t think their child “understands,” but if you’re paying attention, you can see that they absolutely do, and they are destroying themselves trying to please the people who are supposed to be loving and supporting them.
Really, this is advice for anyone raising kids, but it becomes especially true when the kid being raised has a disability. The world is not built to allow anyone to be disabled, it’s set up to force people to be the least disabled they can be at whatever cost. It’s set up for the comfort and convenience of non-disabled people, and no one else.
In my posts on play skills, I discuss paying attention to what the learner does, not what they should be doing. Again, this becomes especially salient with kids with disabilities. The process of getting any diagnosis of a developmental disability is often a barrage of things typical kids do that this kid doesn’t. With all of this going on in rapid succession over a period of months if not years, it’s easy to focus on everything your child isn’t doing.
Don’t get sucked up in it. Maybe typical kids like to build elaborate tracks and watch their racecars go through it. Your kid just wants to watch the wheels spin. Instead of trying to get them to build the track, join them, enjoy the spinning wheels with them. You’ll discover your child’s actual passions and interests, and from there, you can support their journey in discovering who they are, rather than who the world thinks they should be. You will also have a much closer relationship with your child, and they will flourish that much more because they know someone, even if it’s only you, has their back.
Accept the uncertainty and celebrate the gains
It’s easier said than done. No one likes the unknown, especially when it comes to someone we care about. Battling this feeling though, especially when your child is autistic, slips very easily into making plans for what that child should be and away from who they are.
Mindfulness tells us to be in the present, and in this situation that could not be more true. Take a moment and consider the little autistic person you love in your life. Who are they right now? What are they doing right now? What can you be doing right now?
Let’s say right now, this little person really wants to dress themselves, but they are just failing. It’s upsetting, and makes getting dressed in the morning very difficult for everyone because they cry and scream. Maybe they even drop to the floor, hit people, or break things. If we’re focusing on the future, we might think, this has to stop. This behavior is not OK, it’s taking hours to get ready in the morning, and when that human is bigger, this can get dangerous. Also, it’s important to be able to do things on your own. They should be able to get dressed themselves eventually.
Those are all huge, important goals that can make or break the future, right?
Let’s look at right now, and put yourself in our little human’s shoes. They want to get dressed by themselves, but they can’t. They need help, and that’s frustrating. Also, their brain is still developing. It may even be taking longer than expected to do that. As a result their emotional regulation skills aren’t there yet. Instead of the long-term goals that feel like mountains to climb (i.e. teach this person to dress themselves, stop the tantrum behaviors), we can focus on far simpler, broken-down versions of these goals.
How about instead of bulldozing into the kid’s room and forcing the clothes on their wiggling body, you walk in with just pants. Explain it’s time to get dressed, and suggest they try putting their pants on by themselves. Pay attention from there. Where does the struggle start? “They can’t put their pants on” is a broad, long-term, future-focused problem. Maybe, while trying to put on pants, they can’t figure where to put their legs. Well that’s a short-term, now-focused problem. Ask if you can help, and show them where each leg goes.
Voila! Tiny human puts on pants! Sure, they had help, but they did more of it themselves than they ever had before! That’s a great achievement, and it’s worth celebrating.
Are they going to put their pants on completely by themselves tomorrow? Probably not, but now you know how to support them to that goal.
Celebrate those steps; don’t mourn the path you still need to go. You will get there. We all do. No one is an expert the first time they try something, especially if you have no idea how to go about doing it.. How simple that task may seem to most people is irrelevant. Your current challenge may be comprehending non-euclidean geometry. This person’s challenge is putting on pants. The achievements and the goals are on equal ground.
Resist the urge to pathologize
Once a diagnosis is in the picture, there’s a tendency to over-analyze everything. Anything not inherently positive is immediately seen as related to a disability, and thus, seen as inherently bad and in need of intervention.
Don’t fall into this trap and don’t let others do it either.
I frequently get this question from parents: “Is this an autism thing?” and sometimes, yes, what the child is doing is very much an autistic trait. Sometimes though, what the child is doing is just… being a child. It’s not an “autism thing,” it’s a kid thing.
But here’s the thing, even if it is “an autism thing,” that’s OK too!
Let this be your guiding motto: If it’s not harmful, leave it alone.
Some people will say “if it’s not harmful or socially stigmatizing, leave it alone.” No. Fuck socially stigmatizing. The problem lies in those creating the stigma, not in those being stigmatized.
Let your child be their autistic selves, and if it makes someone uncomfortable, that’s their problem and they can find their own way to deal with it.
Not sure where the line is? Consider this: One person’s rights end where another’s begin. Got a really loud stim and another with extreme sound-sensitivity? There’s a conflict, but we need to consider both parties. The answer is not “loud stimmer just needs to not do that anymore,” because that violates their rights to stim in a way that meets their sensory needs.
At no point though is it OK to say “this needs to be addressed because it’s weird” or “we need to make this a goal because this is what neurotypical children do.” Contrary to popular belief, that does far more harm than good. Arguments in support of that idea usually involve peer acceptance and making friends, but consider this: Would you really want your loved one to be friends with someone who wouldn’t otherwise accept them for who they are?
If you’re doing your best, you’re doing fine.
I firmly believe that most parents just want to do what’s best for their child. The problem is, there’s a ton of conflicting information to sift through about what that looks like. We often expect caregivers to be perfect– every mistake is an unforgivable blemish on their child’s development. Mom-shaming is rampant, especially with the rise of the internet. The very community that should be the most supportive crashes and burns its own members better than anyone else.
Then there’s the toxic individuality. Even other family members are shunned from supporting because somehow there’s something wrong with accepting help raising a literal person. Now, if those family members are actually toxic, that’s a different story, but if they’re not, they could be exactly who you– and your child– need.
Humans are social creatures, herd animals. We were never meant to do this completely on our own, yet most of us, especially living in the U.S., are conditioned with the belief that we are supposed to. The expectation is we should be balancing everything– self-care, jobs, and raising kids– and if we don’t do it perfectly, we’re failures. Our society does nothing to set us up to succeed either. No one is ever going to raise anyone and make 0 mistakes, especially in capitalism. This is especially true if your child isn’t wired the way the world expects.
Remember to be patient with yourself. Sometimes your patience for others is going to be thin. Sometimes your child will be having a tough day, and absolutely nothing you do will help. Sometimes kids, especially young kids and those with skill deficits in emotional regulation, don’t even know what they want or need. Yet their emotions and their minds are exploding and they can’t calm down.
As long as you’re doing your best, as long as everything you do is with supportive intentions, even if it’s giving in to candy because you just need to get through this trip to the grocery store and you don’t have it in you to cope with a tantrum right now.
You’re doing just fine.