Helena Mary Cole

What a strange thing it is to be a late-diagnosed autistic person!

I heard a late-diagnosed man on YouTube once talking about the shock of being told so late in life, “Oh, by the way, you know the way you’ve been all your life, what you thought were just your personality quirks? That’s actually classified as a disability.” You don’t just walk away from that with a shrug. It kind of hits you like a tidal wave.

When it comes to the subject of disability, I had long figured that I probably wasn’t going to be exempt from it for my entire life. It really is an everybody thing, or pretty close. Live long enough, and it’s coming to call in some way, shape or form, an inevitable part of growing old. Sight starts to fail; so does hearing; legs might not do what they used to do; cognitive abilities diminish with age. You figure it’s probably going to find you at some point, unless you die first. But I gotta tell you, I didn’t expect to find out, at age 47, that not only am I a disabled person now, but I always have been, I just didn’t know it. It’s been true all along? Are you kidding me?

I don’t know if that’s unique to late-diagnosed autism. I don’t know how many of the invisible disabilities can go unnoticed for decades. But there are times when I stop and recognize that being diagnosed later in life with a birth-to-death disability is not something that happens to everybody, and it’s an awful lot to have to sort out at my age.

After it first happens, there’s a lot of grieving. But I never cried over not being “neurotypical” – it’s more like grief over not having known I’m autistic sooner. What if I’d known when I was a teenager that there was a word for how I am, and that there are other girls like me in the world? What if I’d had some badly needed help with managing school? What if I’d been able to tell past employers I was autistic, and they’d been able to accommodate my needs? I could have been spared so much unnecessary suffering!

If anyone thinks that “children should be spared the stigma of growing up with a label like autism,” I could not disagree more. Autistic kids know they’re different anyway. We know it. We feel it deeply, and it hurts. If we don’t have an explanation for why we’re different, then the mental health problems start creeping in, and they are destructive. So, take your pick: do we want kids to grow up with a stigmatized label and get the help they need, or do we want them to live an entire lifetime of low self-esteem, little self-confidence, a heap of negative self-talk and recurrent depression?

Another autistic YouTubers I watched (I think it was Indie Andy, may he rest in peace) once said, “You found out about your autism at exactly the right time for you.” It really hits you when you hear something like that from a totally secular source. But I didn’t believe it for a long time. I repeatedly asked God, “Why couldn’t I have known this about myself sooner?”

It has helped me to think that if my life had been less stable, if my circumstances had been grim, it’s possible someone might have noticed I was autistic sooner. Distress tends to bring out the traits. I might have ended up in the mental health system much sooner, and maybe there’s a chance I might have been diagnosed younger. I also recognize that this would not have been at all desirable, that it’s a blessing that my life did not go that way. I’m wading through a lot fewer problems now that I would have been if I had a harsh past behind me. I thank God on my knees.

In the end, it is what it is. I was born in a time and place where autism wasn’t yet well-understood, even by medical professionals, especially when it comes to how it manifests in females – a time and place where autism was decades away from being properly understood, and so I really didn’t have a prayer of knowing until around now. It’s the way my life was orchestrated. How many people from past generations went from cradle to grave, autistic and never finding that out? If they suffered more in life, never knowing, and died and went on to heaven, their healing is now complete. But the blessing of getting a measure of healing before heaven is mine.

Back when I thought my own fears were holding me back from being this bubbly, outgoing, life-of-the-party type-person, whom everybody liked and sought for friendship, my regrets were piling up fast, especially after I got to middle age. Being able to look back and accept that I was never going to be that social butterfly because of my autism lessens regret. My youth wasn’t so bad. I had my seasons of sadness and pain, but I had times of joy and peace to counterbalance them. I had my share of adventures and came to the other side of them with some friends. Then I got married and had a family. What more could an autistic person ask for?

What more could anyone ask for?

If I struggled more than most people from being autistic and not knowing it, well, maybe that was my cross to bear. Maybe this is part of what’s going to produce my eventual holiness. My diagnosis has enabled me to own that and make it mine, and that, in turn, makes it easier to grasp hold of, in order to offer it to God.

And if diagnosis alleviates suffering, then the way forward has always been clear to me: get my kids diagnosed. Spread awareness. Tell my story. Help autistic people discover they’re autistic. That alone can reduce their burden enormously. And here I am, writing this blog.

There’s no grief that cannot be redeemed.