Sit down and talk to us, not at us. That is the best, most concise advice I, as both a mother to two on the autism spectrum and an undocumented autistic myself, could give to one wondering what it’s like to be inside our brains.
Sit down and talk to us, not at us. And, then, be prepared to listen.
It may surprise you what we will tell you. It will surely surprise you what we don’t.
For example, there is still that myth perpetuated by some that all of us are geniuses of the Rain Man order, so in tune to numbers and data and memorization of facts that people are synonymous with a potted plant in the background of the room. A cute little mascot who provides amusement and card counting capabilities to blow your mind, but nothing more.
But, if you sat down and actually talked with us, you might find, yes, we are often astoundingly intelligent, but we are far from machines. We long for social interaction as much as the next. It’s the understanding of peers that is often lacking.
Then, there is the tragedy myth. This one portrays us as a life locked in upon itself and the rest of the world as the one desperately tugging on the chains. All anyone who buys into this myth can see is endless rounds of therapy, meltdowns, lack of communication. Something worthy of waving their banner over as a new pet cause, crying, ” One day, we’ll find a cure!”
But, if you ever once bothered to sit down and talk with us, you might be surprised to find, yes, there is sometimes a feeling of entrapment, but not the sort that sits languishing for a cure. It is the lack of understanding or the attempt thereof that keeps the chains. I am only just discovering the impact all this had in my life flying under the autism radar, so to speak. I had the chains, but I never knew why.
But, this, I have always known:
Lack of communication can be twofold.
Now, my children have been blessed by and large with fine educators and friends who encourage and guide them to extraordinary growth. But, still, there are those daunting labels of society to overcome, stereotypes to shirk off. I am feeling these on a much deeper level in this, the year of my own autism discovery, than ever before.
Would it surprise you, for example, to know my oldest boy on the spectrum enjoys going to dances? He’s already been to several now and always thoroughly relishes them. And it isn’t some cute thing for the school odd duck to do. Or a set-up for disaster, either. He knows if the music starts to grate, he can take a break. But, likely, that will rarely be a concern as he boogies his best boogie with his peers.
Not because he saw it on a Fred Astaire movie. No. Rather, because he wants to. He longs to be a part, not the lost little pup they pat on the head.
Nobody says this social achievement is not fraught with a certain amount of nervousness and scrambling for small talk. But, really, for which teen is it not?
What kind of mother would I be if I told him, No, you can’t handle it, Elijah.
I’d certainly be one not willing to sit down and talk. Or listen. Or learn from my own lifetime of unnamed struggles.
Or what if I’d told my dear daughter Sarah, also a part of the spectrum, she was better off not trying to keep reaching out to others?
I might well have validated her occasional feelings of sadness when others don’t respond, but, in the end, she’d miss out on those times she encourages a smile out of the downtrodden with her special brand of joy.
And it would have all come of the inability to listen to both her fears and her heart’s desire and treat her as any other child, to both nod to the hardships and still foster the dream.
Now, this is not blindness to the diagnosis, a disrespect to the reality of a different train of thought, or sticking my head in the proverbial sand as though everything will always wrap itself in a neat little bow. I have seen enough to know that cannot always be with life on the spectrum. I have a wealth of my own experiences to look back on now through the lense of a missed diagnosis as well.
There will always be those who get it, those who don’t, those who seek to understand, and those who only think they do.
For those who honestly seek to understand, sit down and talk. Not as to one you assume you must dumb it all down to. Rather, as with the same respect you would any other friend you want to know better.
I won’t say it isn’t, at times, a bit more circuitous a journey than average.
But, isn’t it worth hopping aboard that train of thought that you might catch a glimpse of what my children and I see every day, to recognize, yes, it is different than the rest of the world, but so utterly unique and equally worthy in nature.
And, yet, not without the common links and desires all of humanity possesses.
To want to go to a dance. Make friends. Sing a song. Be more than the endearing mascot, the whiz kid without social wherewithal.
To be more than the face of autism, a cause to march for. To be…just a face. Another version of a human face. A valid one.
Not one that needs eradicated as though we are a crime against nature.
So, to those wanting to get inside an autistic’s brain:
Sit down. Talk to us. Really talk to us. And, then, don’t forget to listen.
We may surprise you.
Marisa Ulrich is a mother of four, two on the autism spectrum. Her work has appeared in Zoom Autism and Her View From Home. Her debut memoir, Broken Cookies Taste Just as Sweet: The Amazing Grace of Motherhood, Marriage, and Miracles on the Spectrum, was published via eLectio publishing in July. Follow her via WordPress:https://brokencookiessite.wordpress.com/,
Facebook: https://m.facebook.com/Broken-Cookies-Taste-Just-as-Sweet-492541130948912/, and Twitter: @mjubutterfly. She makes her home in rural Kansas.
This article was featured in Issue 53 – Working Toward the Future