I’m writing to you in my capacity both as the parent of a little child awaiting assessment for autism, and as an adult autistic woman, and one who has spent most of her life, until the age of 36, undiagnosed.
I know you’ve been wondering about your child. Perhaps someone has said something –- a family member, or a friend, a teacher. Or, maybe, you’ve been thinking for quite some time that your child might be a little... different. “Autism” is the thing that’s been suggested, and you’re wondering.
Perhaps, you’re wondering about the formal assessment process. Perhaps, you’ve already begun to get things moving. Or maybe you’re little further down the line, and it’s dawning on you that the whole thing is far more arduous than you’d ever imagined. I get that. Totally. My family is there, too.
And so, you’re thinking you might not go through with it. After all, she seems to be doing fine right now. Yes, she’s a little on the “quirky” side, but on the whole, she seems to be coping ― you’ll just leave things as they are. Besides, you don’t want to “label” her unnecessarily.
Thing is, though, we’re always labeling people.
Clever. Talented. Bright. Inquisitive. Curious. Compassionate. Kind. Funny. Sociable. Chatty. Tomboyish. Earnest. Bookish. Quirky. Eccentric. Precocious. Gifted.
Those don’t sound too bad, do they? Sure, you might be more keen on some of these “labels” than others, but on the whole, there’s not a lot to worry about here.
What about these?
Bossy. Opinionated. Controlling. Aloof. Selfish. Rude. Shy. Anxious. Naughty. Irritating. Antisocial. In your face.
“An official label may give her choices, and an understanding of herself, that she would otherwise be denied. And that’s important.”
Is it that you don’t want to label your child, or is it simply that you don’t want to label her as “autistic”?
She’s fine now. She’s coping, as you say. But what about in the future?
As she grows older, other labels might start to creep in.
Withdrawn. Lazy. Lacking in application. Arrogant. Inconsistent. Over-sensitive. Away with the fairies. Disorganized. Teacher’s pet. Uncooperative. Defiant. Difficult. Out of control.
And it might happen that you seek out professional help on behalf of this child, who may seem to be so brilliant in some ways, but to be struggling so desperately in others. And then, other labels might be used.
Bipolar. Borderline. Obsessive-compulsive. Clinically depressed or anxious. Anorexic. Bulimic. Suicidal.
Some of these will be wide off the mark. Observed autistic behaviors will be wrongly categorized, and a wrong diagnosis applied. And the struggles will continue.
Other labels might be correct. She might feel pain, confusion, frustration, stress, and exhaustion from puzzling over her identity; from trying, or at times refusing, to fit in, in a world which she doesn’t understand and which doesn’t understand her. From the onslaught of overwhelming information and sensory input. From trying to “cope.”
At times she may try to “mask.” And if she does so, sometimes she will do so successfully. And at other times she will get it woefully, woefully wrong. And either way, it’ll be stressful to keep up, year upon year upon year.
She might struggle with education and employment.
Or she might still do well in life.
But even if she does, something inside will never feel quite “right.” Something will be missing. The key. The glue. I hesitate to use the words “puzzle piece,” they’re too loaded and emotionally charged for many of us; but perhaps they’re appropriate here. This child is not the puzzle, but she isn’t getting the full picture. Something that should be identified will not be.
What would happen if she did receive that label, earlier in life? Before so much of life has got in her way, obscured the picture, prevented the right details from coming through?
She would still, of course, find some things easy, and some things very, very difficult. Inside, she’s still the same person, and autism is a huge part of that. And support can be patchy (that’s something of an understatement, really).
And yes, there is stigma attached to the “autistic” label. But there are many of us trying to change that. And, slowly, it is getting better.
But by knowing – fully – who she is, your precious, wonderful child can start to take ownership of who she is, to embrace her identity. She can work with who she is, rather than against it. By doing so, she can be happy.
If she goes to college or university, her label may help her to access the kind of support with her studies that I could have done with, but never had.
When she’s in employment, that official label will mean she’ll be legally protected, and entitled to adjustments to enable her to do her job to the best of her ability. Understanding who she is might make her less likely to be disciplined for her behavior, to lose jobs because of her behavior, or struggle on in roles she is unhappy with and finds stressful.
Again, support might be patchy. Really patchy. Her employer might not be among the most enlightened. But an official diagnosis greatly increases her chances of getting any support that is available.
The assessment process might be long. Frustrating. Emotional. The right conclusion might not be reached for some time. But the earlier she knows who she is, the more able she’ll be to learn the triggers for her meltdowns, to understand and mitigate some of the ways her autism makes certain things difficult, and to celebrate the strengths it brings.
There may be times when she rejects her label; and of course, she’s perfectly entitled to do so, as long as that’s her decision.
There will, sadly, also be times when disclosing her label might cost her dearly. And that’s awful. And we must all work to stop that happening. We are doing so. And we’ll keep on doing so until it does stop.
But an official label may give her choices, and an understanding of herself, that she would otherwise be denied. And that’s important. That’s vital if she is to find her place in the world, if she is to thrive.
And she can thrive.
And whenever she chooses to make contact – to engage – there’s a whole community of likeminded individuals out there, who’ll understand her. Who’ll know her struggles. Know where she’s coming from. Who’ll help her, and provide a safe place for her to be herself.
We’ll help you too. We like to share our knowledge and experiences. We’re keen to educate. And we’ll do whatever we can to help you understand. I know you want what’s best for your child. Of course you do.
And when that child of yours comes to us, we’ll welcome her. With love, understanding, an open mind, an open heart, and open arms.
An autistic woman who understands
A version of this post originally appeared on Mama Pineapple blog.