When I was in eighth grade I had a “Wellness” class given by a classmate’s mother who had been a child actor and model. The boys were separated out and taken to (presumably) a similar class given by a male equivalent. (I have to wonder now, where exactly did they go? Who was the male equivalent? At the time, I never thought to ask.) All the eighth grade girls sat in a circle on the ground in front of this woman who stood before us in all her coiffed, fine featured, perfumed glory, wearing an oh-so-chic, red pants suit (this was the early ’70’s) and looking like she had just walked off a shoot for the cover of a fashion magazine. (Which, in fact, she had.)
I felt completely inadequate in comparison and all the more so as I sat listening to her glowing accounts of what she did for exercise, the wholesome meals she ate and her disciplined daily use of various emollients. I remember falling into despair as I listened to her, not only because I didn’t know what emollients were, or couldn’t imagine a life that did not include glazed jelly doughnuts, but because everything about her was foreign to me, forget that hers was not a life I had ever thought about having, let alone wanting. But as I sat there I was aware that I should want to be just like her. She represented all that was beautiful and unobtainable and I, in direct contrast, represented all that was wanting. I’ve never forgotten her.
When I gave birth to each of my children, the one thing I wanted more than anything else was to make sure they never felt ashamed of themselves. I wanted to make sure they felt supported, loved and valued for who they were, exactly as they were. I wanted to be sure I cheered them on, to model for them kindness, generosity, compassion and good work ethics. I swore to myself I would do my best to respect them and to listen to them. And then we were given Emma’s diagnosis and suddenly those goals took a back seat to the goal of her being “mainstreamed” and “indistinguishable from her peers.” Those two goals rammed up against my desire for her to feel self-love, self-acceptance, self-worth. For a couple of years I lost my way. In my desperation I allowed others to dictate what I should do and what I should want for my daughter. I forgot that my early goals for her were more important than anything else.
I began to look for an Autistic adult who I could imagine my daughter might be like. I wanted to find someone who might represent a possibility of what I might expect. I read what books I could find, written by Autistic adults, but concluded these adults were much “higher” functioning than my child. It wasn’t until later that someone pointed out these adults who had written and had published books, were at least twenty years older than my daughter and therefore had more than twenty years of learning, experience and growth that my daughter had not had the advantage of. Undeterred, I kept looking anyway. Even when I found someone who seemed to have similar language challenges, their upbringing differed greatly, their interests led them in other directions, I could never quite imagine my daughter growing up to be just like them.
Searching for Autistic adults who might be a version of my daughter was grounded in a desire to calm my fears. It was a misguided attempt to comfort myself. By saying – well this person is speaking so clearly, able to have their needs known and heard, therefore perhaps my daughter will be able to one day do the same, I was hoping to quell my worries. A shared neurology with random people does not mean anything more than it does to compare my shared non Autistic neurology with the same. Without meaning to I was replicating that “wellness” class over and over only now it was my daughter I imagined sitting cross-legged on the ground looking up at someone she would never grow up to be like. This or that person is not an adult replica of my daughter any more than that woman teaching the Wellness class was an adult version of me.
I want and hope my daughter will feel empowered to be who she is without amendment. The best way I can ensure she feel empowered is by listening to her, honoring her, celebrating and embracing her, exactly as she is in this moment. I must give her the support she needs to communicate, show her the different methods she can use to communicate so she knows she has choices and believe in her. And there’s another piece to this, which is this – my issue of self-worth, with not being that fine featured, delicate nosed, thin hipped, flat chested version of ideal woman I grew up believing meant happiness, is mine to work through and not my daughter’s. This may seem obvious to many of you, but it is something I must remind myself of. I have to ask myself often, is this my issue or hers? Comparing Emma to adults, to any adult is most definitely my issue and it is one I am trying hard not to pass along to her.
Emma's Hope Book 
The image of your daughter rock climbing brings back so many memories for me! When my son was 9 I took him to a rock climbing park and was astounded to see my timid son work past his fears and climb to the very top. It was such an important moment and you brought it back to me…thank you! I even learned how to belay so I could “support” him.
I think it’s okay to comfort yourself and calm your fears by looking at adults on the spectrum. I agree that it doesn’t mean a shared neurology will bring about the same outcome but if it helps us get through some fears and worries in the moments in which we need them, that has value.
Thank you once again for such an open and honest article. They always inspire my own introspection.
Those climbing walls are fun at any age!
I think the biggest danger in comparing a child to an adult is the despair that often seemed to follow, at least that was typically how I felt. And it was all based on a false premise to begin with, so not helpful!
Ariane, you darling, you are and have always been beautiful, inside and out, and I wish that was the end of that story! How painful it is to see you have suffered so because of some artificial standard. I am happy you see it for what it is, and are using that learned knowledge to raise your daughter to be exactly who she uniquely is. I do see so much of myself as a child in Emma, but you are right in not expecting her to be anything like me or others. All your autistic friends are unique (and I think pretty fabulous), and very different from each other. Emma, too, should be her own person. You are a great, great mother to see this.
There is another reason I needed to comment on this. I have been that physical standard, and used the art of beauty culture as a tool to get me by, as a performer and sometime model. If I had trouble speaking or understanding, I could pose and smile. If I was pretty and did my simple script, people liked me, and it afforded me much opportunity. Men protected me. I enjoyed it, and it remains part of who I am. It is part of my profession. I am no great beauty, by any means, but have a certain ability to create an illusion, and it makes up for other skills I find harder. It is not who I am. It is what I do, and I hope to the delight of my audience. It gets funnier as I get older, and more fun. When I was younger, there was jealousy, and girlfriends who would imitate me, as they considered me a sort of standard. I was very uncomfortable and confused by this, as I only saw them as so very, very beautiful for who they were, and they were a standard I admired! All of us are only beautiful when we are ourselves, and learn to give what is uniquely ours to give. That takes accepting ourselves. I will never be or do some things others do, but I have a simple gift to give, and am giving it in buckets full. The key is that everyone, autistic or not, have unique strengths and weaknesses, and must build on their strengths, without comparison or competition. I go through much shame when I feel I disappoint others, but never crave to live by anyone elses standard. I only crave that I can be a better me, in order to serve others better.
With that small thought on your lovely post, I will simple leave with a wish that ALL the wonderful people who care enough to read your beautiful writings celebrate who they are, right now, and accept that they have something uniquely wonderful to give. I pray it is never a standard set by others.” To thine own self be true”. It is simple as that ❤❤❤
Chou Chou! I do hope Em will continue her love affair with dressing up and singing and dancing… Thank you for such loving words. You give great joy to so many. It’s clear how loved you are by the clips I’ve watched of you and your audiences! You’re a wonderful example of “to thine own self be true.”
Wonderful comments above! Someone recently said to me that he couldn’t understand why a woman (the one he was referring to live in the 1st century) who was successful would still feel inferior. I was amazed, and then I understood that this was a typically male opinion. Of course women through the centuries and still are made to feel inferior. Why? Because they don’t live up to all those advertisements about long eye-lashes, full lips, curvy figures, flat bellies, etc. etc. Only 100 hundred years ago women were “allowed” to vote, again because previously they’re brains/thoughts/opinions were considered inadequate for the bigger issues. When I was working as a research biochemist at the Rheumatic Fever Research Institute I was paid 2/3rds of what a man doing exactly the same job was paid, and today in many professions it is still the same.
Women are not thought to have the same value as men. Autistics are not thought to have the same value as neurotypicals. Oh, yes? and why is that?? We live in a world of neurotypicals who dictate to us who has value and who hasn’t. And we need to change that perception. I am so proud of you, Ariane, that you are opening the eyes of first me, and then others with this wonderful blog in which the comments of autistics like Chou Chou are absolutely invaluable!
💕Mom💕 Surrounding you with love…
There is no adult version of Emma because Emma is unique I’m glad you realize that.
oh I do Nisha, I do! 🙂
Love this Ariane!
You’ve articulated the thoughts of so many parents.. my favorites and a plus one from Chou Chou’s comment:)
” When I gave birth to each of my children, the one thing I wanted more than anything else was to make sure they never felt ashamed of themselves.” How true, but something I never actually thought of in that way. That is one of my greatest wishes for my children, for all of us.
‘I want and hope my daughter will feel empowered to be who she is without amendment. ” Exquisite.
And Chou Chou’s “With that small thought on your lovely post, I will simple leave with a wish that ALL the wonderful people who care enough to read your beautiful writings celebrate who they are, right now, and accept that they have something uniquely wonderful to give. ‘
And that is what we call a hat trick ( I am borrowing from one of my dear Henry’s latest favorite movies)
Love this, Lauri! And love you and Henry and your beautiful family!
I relate to you. I never had such an intimidating experience as a young woman, but I felt pressure all around to be different. As you wrote about Emma I recognize that I immediately compared my son to my Dad and my husband’s father. Both of them had very similar profiles. It soothed my anxiety to have future versions of my son in my mind.
I quickly learned this was an illusion. I can’t predict what my son will be like. In fact, I was blinded by his strengths and my worries. The effort he puts out to get through a day of school is incredible. I let my anxiety over his future blind me to his real time needs. Now I see that the issue is even deeper. Accepting him sends a vital message to his self-esteem and to all those around him. Thank you for the insight,
I keep thinking about something my mother once said when we were discussing god, something I’ve never been able to wrap my mind around, she said, (I can’t remember her exact words, so I’m paraphrasing) that in people’s attempts to define god, we end up limiting god.
I think this is true for both my children, well, now that I’m thinking of it, it applies to everyone I come in contact with actually!
This is an interesting statement your mom made. It reminds me of something said by Robert Anton Wilson about the nature of belief systems and why he doesn’t subscribe to any of them. Something along the lines of “Once you have said to your self ‘I believe…, you have made up your mind about that subject and stopped thinking about it. And if you are not actively thinking about something, if your brain is not *thinking* then you have, in essence, achieved brain-death.” (I, too, have paraphrased, so apologies for that not being the exact wording!)
This sentiment really resonated with me when I first read it. In regards to your mom’ statement about limiting god by attempting to define him, I think it is a similar notion. Once you have decided what god “Is”, then you no longer have to think about it, right? So you have limited your ability for further revelation. You can take that further to say that if you have decided that god does exist and is the creator of all things, that might limit you to the beauty and knowledge that scientific discovery has to offer about the nature of the universe and our place in it. This is the inherent danger in dogmatically subscribing to any belief – or in your mom’s example, a definition – or in your wellness example, a standard – or in the tangled world of medicine and child rearing, a diagnosis. When you give in completely, and I mean with everything in your heart and mind, to a belief, a standard, a definition, or a diagnosis, and decide that what is known is known, and you let yourself stop thinking about the very thing you believe in, you hold as a standard, you have define, or diagnosed, then you have turned off your brain – and have limited yourself to what is already “known” instead of staying open to everything yet to be discovered.
I think this is the point Landon was trying to make with his video about elopement, and why he had mixed feelings about the diagnostic criteria for Autism including wandering as a defining characteristic. While it certainly is something that happens frequently and people need to be on alert because of the possibility of it, by making it part of the *definition* of Autism it could easily lead to some people *limiting* their investigation into the reasons behind it. So, if a child bolted from school, one might be inclined to state “Oh, well he is Autistic, and Autistic children do that sometimes. That explains it.” And then not give further thought to all the possible reasons *why* that child might have eloped. (sensory overload, feeling unsafe, etc)
So I can see why you thought of what your mom had said in this instance. Because if we get hell bent on creating a definition of what childhood is or is supposed to be, we stop thinking about everything else that childhood *can* be, and lose sight of our own children’s childhood experience even as it is unfolding right before our eyes. 🙂
Katrina – this is a wonderful. Yes, our “beliefs” can be limiting! Someone once said to me (I can’t remember now who it was) if I approached parenting with the same wonder and awe that a small child approaches life I would be a great parent!
And I have a feeling your kids probably think you *are* a great parent! Not to mention, these are the qualities of a great scientist too. (hence the notion of the “scientist in the crib” – great book by the way) And you once claimed you were “not a scientist.” 😉
You have an incredible grasp of explanation and expression. Great writing.