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I Worry My Toddler Has Autism. No One Believes Me.

A dad who sees troubling signs with his son can't get anyone — not even his pediatrician — to listen to him.

Goodfather,

There’s something off about my three-year-old. He’s smart and focused, but quiet and reserved — and this in a family of loudmouths. He cries some and laughs some, but is seriously reserved with emotions, a kid who is better at observing than engaging. I fear he has autism. I’ve expressed my fear, but our doctor says there’s no clear signs and wouldn’t send us to a specialist. My wife heard me out at first, but didn’t do much about it and now gets annoyed. She doesn’t believe me — she thinks we just have a quiet kid.

Much of my worries, I’ll admit, come from having a close cousin who was on the spectrum. I loved growing up playing with my cousin, but then there were the freakouts. Sometimes there were screaming fits that often started when we were playing and I “did something wrong” and he just couldn’t deal. They were violent towards me usually, but scary as hell nonetheless. The worst part was that when he got out of control his parents just separated us and covered it up. No one admitted he had autism and I’m not even sure the idea that they take him to a specialist or bring up his moods to a doctor occurred to anyone. I think he suffered unnecessarily as a kid for it.

Do I really think my kid has autism? I don’t know. But I want to turn over every rock to make sure that we’re prepared in case he does. Is it so much to ask for my wife to be on board with me?

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Spectrum Seeking in Saskatchewan

 

There’s a moment in the documentary Far From the Tree, based on a book with the same title by Andrew Solomon, that I think about all the time — particularly when the subject of autism spectrum disorder arises. The movie introduces the Allnutt family, whose teenage son Jack is nonverbal and lives with a particularly disabling form of autism. We discover that the Allnutts have long struggled with communications barriers with Jack who often lashes out, sometimes violently, in frustration. Probably in a similar way to your cousin. 

The Allnutts are often frustrated but remain tireless in their attempt to find a way to communicate with Jack. Eventually, they find a patient and stubborn therapist who finds a solution, and we watch as Jack offers his first sentence to his parents. Using stencils to spell out the words, slowly, and with great effort, Jack tells them, “I am trying, and I am really smart.”  

What’s mindblowing is that while the Allnutts have been kicked around by autism, they are never beaten by it. On the contrary, they speak with great clarity about accepting Jack for exactly who he is. They do not feel Jack needs to be fixed, and they work to make sure that he is able to show the world his most true self: a wickedly smart young man who experiences life differently than others. 

Great. But what does any of this have to do with you? Well, when I think about the Allnutts, and other families who have come to accept and even cherish their children’s differences, I think about the essential qualities that have allowed them to navigate their complicated lives. And it seems to come down to three things: love, acceptance, and patience. Because the fact is that there is no training, intervention, treatment or therapy that can erase a child’s differences. Can those things make life easier? Sure, to some extent. But only acceptance seems to allow families to live truly fulfilling lives with children who are fundamentally different from themselves. 

I do understand your worry. I’m a father to a very different kid myself. My 8-year-old son has a couple of neurological issues that make it hard to connect with the people and the world around him. His barriers are minuscule in comparison to others, but despite that fact, I have spent many sleepless nights worrying about his future. But I also love my son for his differences. They are a part of him that I would never want to go away. Because the fact is that those differences have taught me a lot about myself and the world. I’m incredibly grateful for who he is despite the fact that the world sometimes struggles to understand him. 

You’ve got a quiet kid. I’m not going to try any kind of armchair diagnosis about why that might be the case. Reasons could range from that being your child’s natural temperament to your fears of autism spectrum disorder. Your desire to turn over every rock in order to prepare for who your child may be is completely natural. That desire is likely heightened by the extreme circumstances you experienced with your cousin when you were a kid. As fathers, our base impulse is often to “fix” things we see as broken. When we don’t know how to fix them, we can feel unmoored and helpless. 

Know this: No matter who your child is, there is no fixing them. 

Your desire to prepare and tease out a problem with your child could be perceived as dissatisfaction with your son. There’s a good possibility that your wife’s annoyance at your spectrum quest is due to the fact that you are losing sight of who your son is in worries over who he could be. 

In your circumstance there is really only one way to prepare: double down on love, both with your partner and your child. Because without love, there can’t really be acceptance. And without acceptance, there can’t really be patience.

In the end, my advice to you try and shift your thinking. You have a kid who is different than you. In many ways, that’s an incredible gift. Raising him is going to be a unique and rewarding ride. Roll with it. Learn to support him when issues arise instead of trying to solve issues that have yet to become a reality. Be in the present with your son and allow him to grow into who he was meant to be, not who you want him to be.