Editor’s note: Many of my autistic friends, especially women, were diagnosed as adults. There are myriad reasons for that, but they belong to another post. Nearly all of them were diagnosed with a patchwork of other conditions throughout childhood and into adulthood, none of which ever felt – or was – right. When the autism diagnosis came, it was, for many of them, revelatory. It was not, however, always so for their parents. This is for them.
Oh, my Mama friend, I know.
Even though our experiences were different, I still know.
I know it’s hard to be hit with news that throws your world into a confusing, unsettling imbalance.
I know that it makes no sense at first, even while making all the sense in the world. I know that it’s far, far easier to imagine that life is still as you always thought it was than to start peeling back the layers of what it really was – what it is.
I know how hard it is to face the fact that the child you assumed was just like you, who you parented as though they were just like you, wasn’t — isn’t.
I know how much easier it is to deny the differences than to acknowledge the guilt of not seeing them.
Brooke must have been three years old. She wanted her ballet slippers. I don’t know why, perhaps she was playing dress up, perhaps the moon was in the seventh house. Whatever the reason, she had it in her little head that she needed her ballet slippers.
I looked around the house but I couldn’t find them. I didn’t think it was a big deal. I flippantly told her that the slippers were a no go. I knew so little. She began to perseverate on one sentence. “I want my ballet slippers!” Over and over and over and over again. “I want my ballet slippers!” It would almost have been funny. But it wasn’t. It got louder. She got more anxious. “I want my ballet slippers!”
I explained that I couldn’t find the slippers. I’m sure I offered an alternative. She fell apart. Sobbing, shaking, yelling – you know the rest. All the while, stuck in automatic rewind. “I want my ballet slippers! I want my ballet slippers!”
I wasn’t going to stand for a tantrum. Oh hell no, not this mom. I don’t ‘do’ tantrums. Not in this house, child. I sent her to her room. I just didn’t know. I had to walk her up there because she didn’t understand what I was saying. Or she couldn’t hear me. Or both.
All the way up the stairs she yelled, “I want my ballet slippers!” Jagged sob after jagged sob. “I want my ballet slippers!” Her little body shook like a leaf in a hurricane.
My dad’s words rattled around in the back of my head “You’re really quite lenient with those kids.” Oh yeah? Watch this, Pop. She will NOT get away with this kind of behavior.
“I want my ballet slippers!” She could barely catch her breath, but there was no stopping the broken record. “I want my ballet slippers!”
For heaven’s sake, enough with the %$&*!@ ballet slippers! I put her in her room. I didn’t know. God, I just didn’t know. “I want my ballet slippers!” Gasp. Sob. “I want my ballet slippers!” Over the screams, above the hoarse cry, I explained that she would stay in that room until she could calm herself down. Calm herself down. I didn’t know.
I walked away. She looked so small standing in the middle of her room. I choked back my own tears. I swallowed the sour taste in my mouth. I left her there screaming, overwhelmed, confused, lost.
“I want my ballet slippers!” Gasp. Sob. ”I want my ballet slippers!”
I crouched against the wall at the bottom of the steps struggling to find the right thing to do. I can still feel that wall – cool, immovable against my back. I could barely breathe. Something wasn’t right, but I didn’t know what.
I thought of Ferber’s sleep method – let your child know they are safe and loved but leave them to soothe themselves. I went up again. I stood in her doorway and I told her that she would be free to come out of her room when she got it together. I raised my voice in an attempt to be heard over her screams. “I want my ballet slippers! I want my ballet slippers!” I told her I loved her. Then I told her that her behavior was unacceptable. I walked away again and left her screaming, her face streaked with mucus and tears.
“I want my ballet slippers!” Her voice was breaking, but she didn’t stop. ”I want my ballet slippers!”
I was so frustrated. I was so angry. Why wouldn’t she just let it go?
“I want my ballet slippers! I want my ballet slippers!”
I went up again. I grabbed her by the shoulders, too hard. I squared her body to mine and chased her eyes. “Enough with the God damned ballet slippers!” God, I didn’t know. I am so sorry. I thought she WOULDN’T stop. I didn’t know she COULDN’T stop. I didn’t know there was a difference. I just didn’t know.
She didn’t see me. She didn’t hear me. I am so sorry.
I thought she wouldn’t stop.
I didn’t know she couldn’t stop.
I didn’t know there was a difference.
Finding out, even years after the fact, that there is a difference changes everything. And that’s hard – on myriad levels. It’s hard to accept that there was something that we didn’t see, It’s hard to acknowledge that we were parenting the child we thought we had and not the one we did have. It’s hard to own the pain caused by the gap between the two. It’s hard to re-imagine the entire paradigm of our relationship with our children. But please trust me when I tell you this, it’s worth the hard. I promise.
When your adult daughter was diagnosed with autism, she was palpably relieved. It finally allowed her a context into which everything, for the first time ever, fit. Where her life, her perceptions, her experience of everything in her world made sense. Not an excuse, but an explanation. Not a get out of jail free card, but a reason that she felt the way that she did. Not an easy out, but answers to the questions that nagged at her soul for so long.
She finally knew why some things were so damned hard.
Despite this community’s best efforts to demystify it, Autism is still a scary word. I get that. Whether we hear it for the first time when our children are three or eight or twenty-eight, it can be hard to swallow. Hard to assign to our kids – or hear them assign to themselves. It’s big. It’s overwhelming. It can be nearly impossible at first to reconcile the reality of what it means with the (mis)perceptions of what it is. It’s a lot easier to say that it’s not a big deal.
Here’s the thing – it is a big deal. A really big deal. It doesn’t change your kid. But it does, if you’ll let it, change your understanding of her.
If you let it in, it can help you to figure out how to better navigate interaction with each other. To avoid the traps that bring you to the same frustrated, angry, sad places that you’ve been visiting together for so long. The insight that comes with the diagnosis shines a light on the path, illuminating the spots that were once dark – the missed connections, the unseen cues, the misunderstood conversations. It can lead you to a treasure trove of tools that you will need to build the new paradigm. To forge a new path – together. One of mutual respect. One in which you will be able to say to one another, “This is how I see this, but I now understand that you might not perceive it the same way.”
There’s work ahead. Peeling away layers of frustration and misunderstanding is not easy nor is it quick. But what that’s worthwhile ever is? And what could be more worthwhile than understanding your child?
With this diagnosis, you’ve been handed a cartographer’s compass, his brushes and parchment. If you choose to, you can use them together to create a whole new map. To explore a world that is as unique as your child. You will draw in the pitfalls – the sometimes easily avoided roads that lead nowhere, the unwelcoming mountains, the treacherous seas. You’ll record the valleys and painstakingly draw in the winding paths up and out of them, so they’ll be easier to find the next time. You’ll color in the smooth roads and rolling meadows and miles upon miles of glorious coastline. It will be a messy, chaotic, colorful, beautiful map.
These new maps show us how to love our children not as we always assumed they should be loved, but as they’ve shown us that they need to be loved. It is a universal truth that if we are to be successful – if we are to get the best out of everyone in this human family of ours, we must learn to accommodate each other, to help one other mitigate our challenges in order to leverage our strengths. There is no better place to start than within our homes, within our hearts, and with our children.
Another universal truth is that indistinguishability from others is a destructive goal. Trying to contort ourselves into something we’re not comes at a disastrously high cost. A refusal, purposeful or not, to accommodate the ones that we love forces them to conform to us. It’s a losing game, even when they win. The prizes for success are held by too many who have walked the path before your daughter and mine — anxiety, depression, low self-esteem, addiction, suicide.
Thank God there is another way. Supporting them, loving them, accommodating their needs just as they have spent their lives accommodating the demands of a world not built for them, showing them that there is a place where they are valued exactly as they are. I am convinced that, combined, these are the antidote to a world that doesn’t yet recognize the need to bend.
Empowering one another to ask for what we need – to self-advocate, is an awesome byproduct of pride in who we are. When we are open with each other about what we need in order to be successful, when we help each other to find it, we ALL succeed. And wouldn’t you know it, when we are honest with ourselves and each other about what those needs are, we can create environments that work for everyone, pairings that complement one another, jobs that leverage talents once thought too obscure to be valuable.
It’s scary. Because to accept your kid’s needs is to be unable to deny that they’ve unwittingly been accommodating yours. To understand that your child needs accommodation to be successful is to see that you do too. That’s uncomfortable. That’s hard. But it’s worth it. I promise.
Your kid is worth it.
You are worth it.
Your relationship is worth it.