Saturday, January 29, 2022

Autism Answer: "What's Wrong?" vs "Are you okay?"


I tend to feel cared about when someone notices a shift in my mood and reaches out, asking about how I'm doing. 
However, I confess, when asked "what's wrong" I like it less. I try to remind myself, they are simply caring. But my knee jerk reaction is, they think something is wrong. 
Yet, if asked "are you okay" or "what's on your mind" or something similar, I tend to feel more encouraged to explore my mood. I have less of a defensive reaction. Instead, I feel invited to share any reason I may have for the shift in mood. And in truth, there is often no big reason. Our moods move around. It isn't always because something is wrong. Maybe we simply ate sugar and are feeling it, or our hormones are doing a natural shift, or we read something that's put us in an introspective moody seeming place. Or, maybe something hurtful or challenging or unhealthy is going on. Maybe talking it out or telling someone who cares can help us feel better. 
I don't think it's wrong to ask "What's wrong?" I know I'm lucky when someone cares and asks about my feelings. I know my reaction to "What's wrong," is my reaction, not necessarily based on the meaning behind it. Sure, it infers the person thinks something is wrong, but the bigger inference is the person noticed my mood and cares in some way. 
I bet there are people who would feel more comfortable with hearing, "What's wrong?" if they needed to talk. Maybe it would mean they feel as though the asker of the question is really ready to hear the problem. Perhaps a simple, "Are you okay?" would give them the feeling the asker wants to hear, "Yes, I'm fine," rather than anything deeper. I can easily imagine a person feeling not defensive by "What's wrong?" but, instead, more truly noticed and cared about. As though the question means, "I am prepared to take the time to hear what's going on for you because I care and see you, and notice something is amiss, and I want you to unburden yourself by telling me what's wrong." 
I am not that person. But I believe others may be. 
What do we do in a world where people react differently, yet often in drastic ways, to various words and phrases? We shouldn't simply strike words and phrases out of our language because they might be a problem for some people when they might be a lifeline for others. 
I recommend, instead, we be truthful with ourselves and our loved ones. Our reactions are completely valid and interesting and personal. But they are not so personal that no one will understand or learn from them. I say we explore and share. 
So, please, if you see me seeming down or in an unusual mood, don't hesitate to ask me if I'm okay or what I'm thinking about. I hope you won't ask me "What's wrong?" but if you do, please forgive my potential childish defensive reaction. If I push back because I feel a sudden need to insist that nothing is wrong with me and I have every right to have more than my one, most common, happy silly mood. (By the way, I do love my happy silly mood, I just also like my many other moods.)
Please note: I'm working on that reaction. But I'm not quite there so I apologize in advance for the temper tantrum I might have. However, the upside to my temper tantrum is you can confidently say, "see, I was right, something is wrong," at that point. tee hee!
Let's be contemplative and kind, rather than combative and unrelenting, while exploring reactions to words and phrases, friends!

Thursday, January 20, 2022

Autism Answer: Autism Exists In Our Lives And Is Naturally Included In Our Ideas

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


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!!

Monday, January 17, 2022

Autism Answer: Born a Girl

Me circa when I knew one day I would be a boy


When I was little I assumed in an absolute manner that one day I would go from being a girl to being a boy. It seemed unquestionable and obvious to me. I didn't have a desire to become a boy, I didn't have a feeling of having masculinity inside me at all and, quite the contrary, loved to imagine myself the prettiest little girl in the history of pretty little girls. But I also KNEW for a FACT that one day I would be a boy, and I was absolutely okay with that.

Eventually, at an age I can't quite recall but know as being a little old to still hold this belief so certainly, I approached my mom for some clarification.

"Mom?" I asked, a little shyly.

"Hmmm?" she replied over her steaming coffee mug, smiling at me expectantly and taking a pull on her cigarette.

"When will I be a boy?" I think I was quiet as I asked. I was a shy little thing, but not with mom. However, I did want her to see me as wise, so not knowing was something I sometimes felt nervous about.

"What do you mean?" she asked with interest, placing her cigarette in the ashtray. Not a hint of amusement in my memory. Simply interest in me and my question.

"When will I become a boy? Right now I'm still a girl, and I like that, but I want to know when I get to be a boy. Will I wake up a boy one day or does it take time, like when you have a baby and they take time in to grow in your tummy?"

"Why do you think you will become a boy, sweetie?" She looked surprised, as if she didn't already know about it. It still didn't occur to me that I could be wrong since the knowledge was so certain in me, I was watching and listening to her from that knowing place. So I explained it for her.

"Well, if you are born a girl, one day you become a boy. And if you are born a boy, one day you become a girl. Because that way we all get a turn to be both." I looked up at her to see if she understood.

However, she simply smiled and told me I had it wrong.

"Oh, no, that's not how it works, Tsara. You are a girl now and will always be a girl. Unless you choose to change that.* It won't just happen to you."

"That doesn't make sense, mom." I was confused. How could she not know? My mom, so brilliant and beautiful and smart. So certain of things. Yet this simple fact had eluded her. "You can't be only a girl or only a boy, you have to have a turn for both."

She began to explain to me that she had been born a girl, and was now a woman. That I was right about change, but the change was different than I had believed. Honestly? I was shaken. It didn't bother me to know I wouldn't be a boy, but it really shook me to learn something I absolutely KNEW to be true, something no one had taught me or told me but seemed clearly at the base of reality and hence not in need of teaching or telling, was wrong.  

I was a lucky little girl. My mom was kind. She didn't ignore me or find me silly. She also didn't take my misunderstanding so seriously that she felt compelled to over-explain, push, or worry. She simply listened to me as though my thoughts mattered and told me what she knew to be true, and let me assimilate it all in my own way.

However, I didn't like it. At first. It is an uncomfortable position to find yourself, having to reexamine everything you think and believe when discovering it was built around something you hadn't examined and had simply presumed, and now you need to start at the center of your belief building in order to reorganize and look for places you may have made other errors or, painfully, embarrassed yourself. 

How many times, I wondered, had I said around friends, "When I'm a boy, I will/won't...."? What had they thought of me? What had they said behind my back? How many times, I also wondered, had I made plans for my future that depended on me being a boy? Or a man? It was quite a lot. And now everything had changed and my world had been rocked. 

I would begin imagining a different me for my future.

Back then, though, I was still young. Still used to being wrong and learning the stuff we build our beliefs around. So it wasn't as painful or challenging as it is now, now that I've built so much and so high and so far and so deep that making a change at the center of it is far reaching and means so much more work and, yes, can be more embarrassing.

If you know me well, you already know this story. Of me thinking people were born one gender and then turned into the other. You know this story because I keep it around, it helps to remember it. Remember how certain I was it was true, how gracefully my mom helped me rethink it, and how many things I felt upon having to make the change. Ultimately, I was happy. Because I did like being a girl. And I especially liked knowing one day I would be a woman; a mom.

It's worth remembering that even as we grow older and wiser, we still believe things that are wrong. It's okay, and it's universal. Hopefully, we will rethink gracefully and share our beliefs with both a willingness to change and an understanding that others might be shocked by our revelations and, themselves, choose to change.

Some changes do just happen to us: most of us who are born girls do become women when puberty happens.

Some changes are chosen: some of us who are born girls want to become boys and find ways to do so.

Whether the change happens or is chosen, we can always be open and able to reevaluating the foundation and beliefs we are growing them out of.

I was born a girl.
Beyond that, I am mostly building the rest.

Hugs, smiles, and love!!! 

*I'm not sure mom said that part, about being able to choose to become a boy, but I know she might have. And I remember thinking it at that time, so she probably either said it, eluded to it, or simply left room for me to consider it.