My brother, Dar, bowling
Recently this blog, my blog, this place where you and I meet to explore memories and books and thoughts worth undressing while daydreaming, where we sip coffee and take breaks to dance and go pee and then get more coffee, where I image you being interested in all this stuff I want to think deeper about so I give you the role of asking me to explain a little better, was included in a list of Top 100 Autism Blogs. What an honor! Thank you for asking me to explain a little better. We make a good team!
However, though we do talk about autism here, it is not the most common subject. Sure, it started off as being one of our more common spin off points, but it is now more of an element. It exists in our lives and is naturally included in our ideas.
I like that! That is kind of the goal of inclusion, right? Not to ignore a thing or pretend it isn't unique in the reactions and needs it manifests, but to simply include it as part of our lives and expectations.
But it remains legitimate and necessary, also, to talk about autism.
As I was thinking about this I came across -
Several years ago I was invited to do an author interview for a beautiful woman and her website, Books for the Soul. I can't find the actual interview anymore, although this link will take you to her review of my book Spinning in Circles and Learning from Myself, but I did stumble across the document in my files where I answered her questions.
The following snippet feels relevant to the audience of this blog. A blog that is written by someone who would never have been brave enough to discover, believe in, and write about uncommon answers if it wasn't for autism. A blog that found itself on a Top 100 Autism Blogs list. :D
Excerpt:
Books for The Soul: In your collection of essays, you seem to be the voice of reason with friends and your sons. But when it comes to your brothers, it seemed that your actions were different. Did you recognize this shift? Did your impatience towards your brothers allow you the maturity to better deal with your own family? How so?
Me: The thing about writing, at least the type of writing I’m attracted to, is it insists on understanding and relating to each character. Because of this I’ve always found it easy and even addictive to put myself in the place of another, suspend judgement so I can fully “get them”. However, in my reading and writing I rarely came across people with mental health challenges as all-encompassing as autism. Schizophrenia, Tourette’s Syndrome, autism, these are not part of your usual protagonists. I was far less practiced at understanding people who appeared not understandable. Sadly, my lack of understanding seemed more acceptable to the professionals and neighbors in our world than my mom’s insistence on understanding.
Writing shifted that for me (thank goodness). And only because I accepted the invitation and challenge to write press releases and media pitches for my mom, who is an international mentalhealth expert. She is also the most gifted writer I know, so when I took on the role of PR person I dared myself to raise my bar and meet her halfway. It took some time for the writing to help me see, but not much. Writing with the intention of understanding is a quick medicine. My brothers felt the shift in me and our relationships have strengthened.
It is certain that my struggles and successes as a sister helped me be an intuitive mom. When my youngest sons showed signs of autism I knew almost instinctively how to find the balance between pushing and allowing. And when I didn’t, I asked my mom!
But it is also true that my experiences as a sister were sometimes a detriment. I’d seen how the world and the people in it treated my brothers, and I’d played an unfortunate role myself in the self-esteem issues they suffered because of it. So sometimes my desire for “normal” sons overwhelmed my hope for passionate happy ones. The lines are blurred – the work of fitting in isn’t entirely value-less – so I could justify my mistakes, and make them again.
However, in the bigger picture nothing but good has come from having such a diverse family while being willing to be truthful about my own mistakes.
Books for the Soul: Again, it seems as if you're often the person people go to for help and moments of pause. Who do you go to for guidance? Why him/her? How did that space become safe?
ME: “It feels like I’m always calling you to whine about my life and you’re always helping me. This is a one sided relationship,” my friend says with two parts playfulness and one part worry. “No way,” is my quick reply. “When we chat and I give you my ideas, that’s you asking me questions that help me know what I think. My life is great because you whine to me!” We giggle.
There are a few places I go to for guidance. Most of them being safe places where I trust I can be vulnerable and open without fear of repercussion. My close friends and my sons give me that safe feeling; a knowing that I am entirely loved regardless of my truths. With them I feel encouraged to seek my own answers, using them as a living and thinking sounding board.
However, when I seek answers or feedback from outside of myself I go to my sister and my mom.
As I mentioned earlier, my mom is a renowned international mental health expert so her knowledge is vast. She is also an out of the box thinker and leader who loves me fiercely. However, I too am a mom who loves fiercely, so I have reason to suspect that regardless of how gifted my mom is when it comes to putting her own agenda and mothering needs aside, our entanglement is persistent, coloring her advice to me. Enter my sister.
Like mom, she is strong, thoughtful, deeply empathetic, and brilliant. Also, she is my closest friend and has always, always, always managed to give me a feeling of active worthiness. Younger than me by three years we never the less grew up together. Nothing is secret or beyond us. All the things we leave unsaid exist in harmony; not hiding, but mingling and known. There is a story of why our friendship is all encompassing but there is no beginning. With me and my sister (rough patches included) it is always. She is my safest space.
Books for the Soul: Tell everyone about your initiative with autism and why you are using your platform to educate people about it. What should people do if they are looking for help/answers? What if someone suspects a loved one is autistic but fears asking those questions?
Me: As a reader I have been shaped by a vast collection of stories and perspectives. In so many ways this has helped me remain forever open minded and able to understand people. But there are a few communities of people missing from the popular books (and films, and tv shows) that shaped me and my peers. And it seems to me that none are nearly as missing from the spotlight of our cultural narrative as the disabled. Characters with Tourette’s or Cerebral Palsy or epilepsy. This is a dangerous and cruel lie about the world we live in. The world they live in. We need them to star in more stories. They are talented actors, writers, thinkers, singers, comedians, creators. Why do we harm each other by mostly using or ignoring them?
So I try not to! I hesitate to write stories where the main character is autistic because I am not. But I don't want to ignore them or use them only to pull heartstrings. I share so that they will share, so that people will be honestly and openly interested, and so that we will admit to our own discomfort in order to overcome it.
Autism does not make people not people. It is a disorder that kind of makes the world behave differently for them – sounds, smells, touch is different for someone on the spectrum. Yet the hardest part remains how we treat them. The looks, the pity, the anger, the judging.
If I could suggest only one thing to a person who suspects they or someone they love is autistic, I would suggest that they reach out to my mom. Ideally, have her come to you for an outreach.
She was undiagnosed (or, more honestly, continually misdiagnosed) most of her life and is called “the autism whisperer” by many of the people she works with. Though she doesn’t like that moniker. She feels as if it suggests she has some sort of whimsical magical ability, when in truth she is just really really good at caring and understanding. Perhaps the truth that she seems to have some sort of whimsical magical ability says more about us than her. Hmmmm?
So for those of you hoping to learn more about autism, or mental health in general, reach out to my mom. And for those who know a lot, please share. We need you to shine! Go to the store, audition for roles, write a play, paint, build, be in the world.
It’s an unfair burden, to be the ones out there teaching and leading us. I know. But we need you.
I am reminded of a conversation I had with my nibbling, Ronnie. They are pansexual and my son is gay. We were talking about the lack of representation in film. Ronnie complained that when they do include LGBTQ storylines, the sexuality is too much the focus. “I hear you,” I agreed. “But I admit to doing it myself, in my screenplay CARHOPPING. The thing is, we’re still at a place in society where the issues that come up when people are sexually different or diverse need to be acknowledged and respected. Your sexuality is causing reactions that might be hurting you in ways we need to explore, change, and validate. One day, soon I hope, that won’t be necessary. The characters will just be who they are."
Now, who we are is influenced by our sexuality. Who we are is influenced by our abilities and challenges. Who we are is influenced by our culture and the culture around us. There will, wonderfully, always be stories exploring that.
But when we are truly inclusive, we don't need all the stories with people who have autism to be about autism. Or all the stories that have people with black skin to be about black skin. Or all the stories that have people with diverse sexual tastes or challenges to be about diverse sexual tastes or challenges. Those stories are of great value but need to be balanced out by all the stories of people being people in every other kind of story as well.
And now, back to -
Recently, this blog, my blog, this place where you and I meet to explore memories and books and thoughts worth undressing while daydreaming, was included in a list of Top 100 Autism Blogs.
Autism is not the most common subject, it it is more of an element. It exists in our lives and is naturally included in our ideas.
I like that.
It is my hope that you like it, too.
Be sure to check out all the other blogs on the Top 100 list as well! What a diverse group of voices, perspectives, styles, and abilities. It is truly an honor to be among them.
Hugs, smiles, and love!!
