Inside and Out
“If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities, and so weave a less arbitrary social fabric, one in which each diverse human gift will find a fitting place. ” (Margaret Mead)
Autism is known as an “invisible disability.” That means that it is not a “disability” or condition that is immediately apparent to others. Sometimes, when I glance at my daughter, it is easy to forget that she has autism. There are, after all, no physical symptoms or attributes that would immediately identify her as being autistic. Instead, I see a girl who is growing into a young woman. As she enters her teenage years, her body is changing, maturing and developing. She is almost my height, and is far from that little girl who was diagnosed with autism at age three. But, what is happening on the outside, does not always reflect what is happening on the inside.
Inside, my daughter retains a certain innocence, more consistent with her younger years. Her interests, though evolving, are often not on par with girls of the same age. The distinctive levels of sarcasm, so apparent in many teenage girls, isn’t present. Instead, she still speaks with the more lilting tones of a child. I watch as her sister, only fourteen months younger, surpasses her in social and emotional development. It is a bittersweet thing to witness that dynamic, though I don’t think that Yael notices. At least I hope that she doesn’t.
These days, in addition to being my daughter’s advocate, I find myself playing the role of adolescent coach, trying to help my daughter manuever through and understand, the physical and emotional changes that come with puberty. She is always a good student, eager to please. But it is hard to try to teach the things that simply don’t come naturally to her . Why must she now take the time to look in the mirror each morning before she goes out? Why must she pay attention to things like shaving, tweezing or how her hair looks? Why does it matter, when she sits down at the table, how slowly she eats, how she sits, or how often she uses a napkin to wipe her face? Why must she try to use a more grown up voice when she speaks to others? These things didn’t seem to matter as much before. Suddenly, puberty brings on a whole new set of social expectations? Why do these things matter now? And how do you work to make the inside development, just a little bit more consistent with the outside?
I have shared with Yael that as she gets older, she will have to think about how she presents herself to the world? Taking that time to look in the mirror and put herself neatly together, is thinking about how she wants others to see her. Part of sitting at the table, sitting up straight and pausing as she eats, is about engaging others in the social act of eating, and once again being mindful of how she presents herself to others. Trying to speak with the tone of a young woman & not a child, is about having people take her & her ideas more seriously. She gets it. She is a good student, but it is not intrinsic to her. Left to her own devices, these things would not matter as much. I get that. Sometimes I wish they didn’t matter either. It would certainly make her life with autism, a much easier one. We can not expect that she will wake up one morning and inherently understand the social and behavioral norms that she is trying to follow, instead we practice and role play, teaching her & training her to be aware of these societal expectations, much like one would train an athlete.
Sometimes, playing the role of coach means that I go to bed at night, feeling as if I haven’t been a very good mother. The last thing I want is for my child to feel as if she is always being corrected, redirected or asked to do things differently. Her initial response to our social skills lesson, is often to apologize, believing that how she has acted on her own is somehow wrong. It is not wrong, and I tell her that. But it is not what society will ask of her. I try to pick and choose the things that matter most, and at other times I simply make the decision to let things go and leave her be. I refer to all of this as trying to dull the edges that autism sometimes creates. I do not wish to change who she is inherently, but I must wear down those edges enough to allow her to try to fit and function in a world that is going to expect certain things of her. When she wants to meet a boy and wants to date, when she wants to try to get a job, when she enters new social situations and wants to make friends, these things will matter. I wish it didn’t have to be so, but that is the world in which she will have to live. A world in which people will look at her and see what I see on the outside, but who may not take the time to recognize and respect the invisible disability that lies within.
On the outside, she is on the cusp of womanhood, but on the inside she is just a girl, trying to navigate the social, emotional norms that all teenage girls do. But her journey isn’t always as clear. Autism makes it harder to navigate through all of these changes that she is facing. Puberty is hard under the best of circumstances, but autism surely makes it more complicated. I pray that I can balance guiding her and allowing her to carve out her own path, helping her to fit in and find her place, yet celebrate all of the unique qualities that make her so special. I want her to march to the beat of her own drummer, yet be in harmony with the world in which she must live. Somedays I get it right, and others, I am sure I miss by a long shot. I just want to help ensure that we can dull the edges of autism enough, so that others will take the time to get to know all the gifts that my beautiful daughter possesses just beneath the surface.
“When you think about it, not all characteristics exhibited by typical people are worthy of being modeled. A much more meaningful perspective is to teach this population the academic and interpersonal skills they need to be functional in the world and to use their talents to the best of their ability.” (Temple Grandin, from the book, “The Way I See It: A Personal Look at Autism & Asperger’s)