Managing A Late-Life Autism Diagnosis

Living Well

On a recent birthday post, I wrote that it’s been an auspicious year. And that, “It feels as though I’ve been putting a jigsaw puzzle together all my life, and I just looked under the table and found a bunch of missing pieces, and I can put them into the puzzle and finally see what the picture is.”

An autism diagnosis late in life is both a challenge and a relief. And the puzzle pieces I’m finding are the understanding that keeps coming, explaining why I feel as I feel, and think as I think, and behave as I behave, going back to when I was preschool age.

A diagnosis is a challenge, because wtf? Three out of five grandkids with autism?

And it’s a relief, because I finally understand that there’s a logical reason, instead of believing that I’m inferior or broken, which has been the case since I first figured out that I was different and had no good excuse for it. I’ve spent my life trying to be normal, and trying to seem normal to others. And now I’m giving myself permission to be OK with it.

I follow a young man with Asperger’s, who came online six years ago looking for friends and support, and now he has 38,000 followers. Most of the followers are involved with autism. They’re on the spectrum, they’re married to someone on the spectrum, they’re raising someone on the spectrum. Their posts are all over the place. Praise-worthy, cringe-worthy, heart-wrenching, awe-inspiring. There’s some “us and them” posting, that society needs to be more understanding, more informed, more humane. There’s also some victim consciousness, which is the opposite of what I write about: effective living through focused thought, shaping life consciously from the inside out.

I look at my eleven-year-old grandson who struggles to make friends and fit in, and my seven-year-old grandson who struggles to hold focus on his parents’ eyes and words, and my four-year-old grandson who struggles to speak. And then there’re the parents. They’ve had to be over-protective, over-informed, gladiator advocates, unceasing ABA deliverers, terrified in the middle of the night for their child’s future, and then patient as Job with the unpredictability that each day brings. I look at all of them, and I want to believe that their “souls” are in charge. In the end though, I have no answers.

I’ve been taught by my teachers that it’s not possible to love people and worry about them at the same time, because worry is fear-based and love is not. That it’s not possible to condemn anyone or anything (autism) and be helpful, because focusing on what’s “wrong” cancels our power of influence. And that the only way to help people is to maintain alignment with well-being, and then from that perspective, see the best in them and the best for them, while believing in their ability to find the answers they need.

So I’m training myself to focus on who my grandsons truly are – and who I truly am – behind the symptoms. And I feel better when I look at my oldest grandson’s hilarious and brilliant sense of humor, and the middle one’s beautiful and powerful precision-focus, and the littlest one’s precious desire to be close and cuddle while he’s finding his words.

One thing I do know is that everyone with special needs – and that’s everyone, because everyone has special needs – is looking for unconditional acceptance. Everyone wants to hear, “I’ll accept and love you exactly as you are, and I’ll never withdraw my support from you, no matter what.” It means no vested interest in whether anyone or anything changes. “I care about you, and I’ll stick with you as long as you’re dealing with this.”

It also means being at peace with all of it. It’s the peace beyond understanding. The harmony that comes with people and circumstances, as soon as we drop what we believe should be different about them.

There’s a joke: “I don’t live it; I just write about it.” And often, that feels like a fit. But I’ve come a long way toward being at peace with all of it. And when I feel bad, I know how to think myself back into feeling good. And I’m holding onto the thought that a blessed life is not a perfect life; a blessed life is a messy life with a positive response.

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Author, Blogger, Contributor to Thrive Global, The Good Men Project and HuffPost