A Message to My Former Self
What I wish I’d known when my son was diagnosed with autism
It’s been six years since my oldest son was diagnosed with autism. Six years, five months, to be more precise.
While it certainly doesn’t feel like it’s been that long, things have definitely changed for us since then.
We’ve had another son.
We’ve had another autism diagnosis. For those who are counting, that makes two.
Most important — at least for this article — we’ve had time to learn about life as autism parents and, you know, just life as parents in general.
I don’t know that being an autism or special needs dad has endowed me with any unique abilities or insights. Probably not. But, it’s certainly given me understanding that I didn’t have in those first days. Looking back, there are a few things I wish I had known at the time. Little tidbits of understanding I’ve attained over the past six years and five months that probably would have come in handy back then.
Maybe sharing some of these lessons here will help other parents grappling with their own kid’s recent diagnosis. Or, maybe it’ll just be therapeutic for me to draft a message to my younger, thinner, and less aware self. Either way, there’s a set of bold headings coming below, in no particular order.
An autism diagnosis is not cause for mourning
Getting an autism diagnosis for your child can be an immensely sad and difficult time. Perhaps it shouldn’t be. Maybe we, as a society, need to grow more accepting of people’s differences and not heap expectations on our kids before we really even know who they are.
Actually, there’s no maybe about it.
Some say there’s a “stigma” when it comes to autism. I don’t know if that’s the right word. But, even though literally everyone on the planet knows or is close to someone on the autism spectrum, many have a hard time changing the default setting that some differences — in this case, neurological differences — mean a person is “less” rather than simply being “different.”
I don’t know if that was my problem back in 2013. All I know is that, to me, hearing from a doctor that my son was on the autism spectrum made me feel like I lost something.
Apparently, I’m not the only one.
The world’s largest — and most controversial — non-profit focusing on autism has a 100 Day Toolkit for families dealing with a diagnosis. On page 14, the document starts walking readers through the proverbial Five Stages of Grief: denial, anger, bargaining, sadness, and acceptance.
Now, I’m not Pollyanna. I can’t reasonably say that parents in this situation are going just skip all the negative stuff and go straight to acceptance.
Ideally, they probably should. But they’re not going to.
I sure didn’t.
For several months, sadness and helplessness were common feelings for me me when it came to my son. I don’t know that I went through all five stages, but I was definitely processing or grieving the loss of something. Many things, in fact.
Even if we try not to saddle our kids with our own expectations and insecurities, I think all of us — at least secretly — hope our kids will be exceptional in some way. And not just in the subjective, every-parent-thinks-their-own-kid-is-amazing sense.
Most parents hope their kids will be geniuses. Or good at sports. Or music. Pick your parental poison.
I had my own aspirations, or at least my own pleasant — and, in my view, realistic — visions of what kind of parent I was going to be and what kind of kid I hoped to raise.
When my son was diagnosed with autism, it felt like much of that hope had been taken from me. That’s why I say I mourned.
I mourned for the future I had in mind for my son, my family, and, yeah, for myself. And I was scared about the struggles and difficulties that had just been randomly dropped in our path.
That’s not an unnatural reaction. I think it’s quite understandable, in fact. But, many things that are quite natural and understandable are still irrational. And, looking back, I think I was pretty irrational about my son’s diagnosis.
No one’s life goes according to plan.
Sure, an autism diagnosis will almost always mean changes and some major recalibration for a family’s future. But, those changes aren’t losses.
Do reasonable and healthy parents “mourn” when their kid chooses art over sports (or vice versa)? I know it’s difficult for some parents to adjust when those kinds of — let’s face it — inconsequential expectations get subverted. Some of them take it really hard. Those parents are idiots. And they don’t tend to have the best relationships with their children down the line.
Getting an autism diagnosis is different from — and, yes, objectively more disruptive than — those other examples. But, they’re the same in one respect: An autism diagnosis isn’t the end of anything.
A cheesier person would say something like: “It’s not the end the journey you planned, but the beginning of a much more rewarding journey.” But who likes cheesy people?
Looking back, I can see that my problem was simple: I focused on myself more than anything or anyone else. I was mourning because I was worried about what having a son with autism meant for me. I should I have just been worried what having autism would mean for my son.
That brings us to the second message I wish I could send to my former self.
It’s not about you
Getting an autism diagnosis meant learning that my son was probably going to struggle with things that come naturally to most neurotypical kids. It also meant that he might have trouble fitting in or getting along, which can mean loneliness and dealing with some really mean people.
That’s some tough news to hear. And, yeah, sadness and grief are natural responses. But, if your immediate focus after getting that kind of news is to wallow over how it will make your life more difficult, you’re a jackass.
And, yeah, looking back, I was a bit of a jackass.
If their priorities and focus are in the right place, getting a diagnosis like autism should give a parent direction and motivation. For us, it was an answer to questions and worries that had been plaguing us for months — mostly because we had to wait that long for an appointment with the developmental pediatrician.
We weren’t ecstatic about the answer, but now our worries and difficulties had a name. My focus should have been on helping my son deal with the issues that came with that name. And, perhaps I did alright in that regard…eventually. But, in my memories, the person I was back took too long to make that shift.
Focusing more on your kids needs is probably good parenting advice in general. For special needs parents, I’d say it’s essential. For parents in these situations, focusing on our own sadness and anxieties will ultimately drive us crazy.
In the end, the struggles of a parents dealing with their child’s disability or differences will almost always pale in comparison to what their kid will go through.
(Note: To be clear, parents taking time on a regular basis to focus on their own needs and wants is also essential. Everyone needs some “me time.” For now, I’m talking about a general outlook, not a 24–7 time management system for your thoughts and emotions. I’ll save that for a different article)
Stop caring about what other people say (at least for now)
Hey, 2013 Me — or any other parent dealing with a new autism diagnosis — be prepared.
When your family, friends, coworkers, and random acquaintances hear about your kid’s diagnosis, they’re going to say all kinds of stupid and insensitive things.
Some will try to comfort you by saying things like:
“I’m so sorry.”
“Man, that really sucks.”
Anyone who’s not autism parent reading this should be on notice: Expressing condolences for an autism diagnosis is bad form.
It goes back to the mourning thing. Regardless of what the parents are thinking and feeling, no one should treat them like they’re bereaved.
Their child’s not dead. They’re not broken either.
Other people — the religious people in your life — still thinking they are comforting you, will say things like:
“God sent him/her to you because he knew you’d take good care of him/her.”
That sentiment — that God only gives kids with disabilities to “good” parents — flies in the face of reality. Also, if I thought God was the sort of deity that purposely selects individual kids and gives them struggles and complications, I’d never go to church again.
But, setting aside the theological and practical ridiculousness of these statements, let me just say one thing to the parents who have to deal with these people: Go easy on them.
Most of your apologetic and spiritually misguided friends mean well. Not everyone gets what you’re dealing with at the moment, and, more often than not, they’re sincerely trying to help.
More importantly, it’s just not worth the energy it costs to take offense at someone who’s not trying to offend you. It’s not your job to correct everyone’s social or theological misunderstandings. You’ve got enough to worry about.
People will also say stuff like:
“He/She doesn’t look autistic.”
“He/She is smiling and laughing, so you know he/she’s THAT autistic.”
This is pretty common. It’s also ignorant.
Statements like these reinforce misconceptions and stigmas about autism that should be corrected.
These are the people who will also compare your son or daughter to the one other child with autism that they know. They’ll also probably ask if you think your kid will be good at math, because Rain Man.
Feel free to correct these people, but only if you want to.
Once again you’re under no obligation to make those in your social circle less ignorant. And, at the end of the day, if these aren’t close friends or family that you want to have around, setting them straight can be huge time and energy waste. Wouldn’t you rather be sleeping?
Finally, there will be those who say things that diminish your child.
They’ll speak with low expectations, as though it’s already been decided that your kid won’t ever accomplish anything.
They’ll toss out flippant digs about your parenting, often masking it as advice for dealing with your kid’s behavior.
They’ll say demeaning and hurtful things about your kid, when they think you can’t hear them. That’s right, I’m talking to you, ladies at the Burger King we went to the week after my son was diagnosed. Bet you didn’t know that my wife spoke Spanish.
They’ll feel its their place to tell you things like the divorce rates among parents of special needs kids. I’m serious. That happened to my wife and me. More than once.
Screw these people.
Go right ahead and tell the idiots in this category what you think of them and their stupid faces. You’re under a lot of stress and having a human punching bag — verbal punching only, I’m not advocating actual violence (wink) — can be cathartic.
But, at the same time, if you don’t want to tell them off, you don’t have to. That’s the beauty of your position. You get to choose what ignoramuses you lay into and which ones you leave for the rest of us to chew on later.
Best of all, no one can judge you. Or at least they shouldn’t. If they do, screw them too.
At the risk of reneging on my “I’m not Pollyanna” assertion, I will say that having two boys with autism has made me a much more self-aware parent. I usually feel obligated to think about what I’m doing — or not doing — will impact my boys’ development. I think that’s a good thing.
To some, that may sound stressful. But I don’t know how to parent any other way.
Others may be saying: “Duh! Every parent thinks like that!” Well, I only know what it’s like to parent from inside my own head. Sorry if I underestimated you.
I’ve learned more than three things in the last six years. Way more.
But, these are the lessons sticking out to me today. In 2013, if it had been possible for me to receive a message from my future self, I think these are the thoughts that would have helped me the most.