to tell or not to tell, that is the question

My boys don’t necessarily look like they have a disability at first glance. There’s good and bad to that. 

The world has this expectation that we should all do things in a certain way. That can be beneficial for society as a whole. It’s why we have laws and standard operating procedures and rules. Like drive on this side of the road and put trash in a trash can and wear pants out in public. All good things.

But then we have very little room for people who don’t follow rules. People who may not look you in the eyes. Someone who doesn’t follow social norms. Someone who might not process directions the first time, (especially if they are verbal). It can be assumed they are being disobedient. 

People have asked me- How do you handle it in public? Do you tell people they are autistic?

When the boys were little, I felt the need to tell so many people we encountered that they were autistic. I think I thought I was being “helpful” at the time, but with time and so much reflection- I think it was because I was concerned with what the collective "they" thought. I don’t want them to think my boys are bad. I don’t want them to think I’m a bad mom. (Why did I care what they thought? Why do I still sometimes care what they thought?)

Over time- I’ve become more selective - but please know this should not come across as someone who claims to have the right answer and always feels peace with what they share. I've definitely gotten into my car and asked myself, 'WHY DID YOU SAY THAT?" I can do that in regards to pretty much any topic, which also includes autism.

Some people need to know- dentists, doctors, teachers, coaches, certain interactions we may have out in the world. Part of me says- But I don’t think autism is “bad” or shameful, so why not share?

I’m realizing the right answer is to first ask myself- Why am I sharing? Is it to make my boys understood, is it to advocate, or is it to make a stranger, and therefore myself more comfortable?

I think it all depends on intent. I'm trying to navigate from a place of pure intent.

I know- the potential hypocrisy! I write a blog and share about my boys being autistic.  I sometimes look back at beginning posts with shame. I hadn't yet heard adult autistic perspective on how awful it is to talk horribly about autism. That by saying anything along the lines of, 'I love my child but hate their autism" feels exactly the same as, "I hate my child", because how can they be separated?

I've tried to evolve as my thoughts and beliefs have evolved. My blog, my social media- my life is so much more than autism. We are all more than one thing that might define us. Not sharing doesn’t mean shame. It just means it’s not always my own story to share.

I’ve shared many times that I struggle with anxiety and depression. These wretched beasts that I wrestle, sometimes daily. I try to share in line with things that I would be ok with a friend or my husband sharing about me publicly. 

“She has anxiety!” Blurted to the Trader Joe person after I awkwardly answer their friendly small talk. 

“She’s depressed”, told to the person wondering why my eyes look sad and I’m wearing what I slept in at the grocery store. 

No. That would feel violating and awful.

There's my line. If I'm not ok with it being said about me, then I'm not ok saying it about them. I don’t share specific struggles my boys have due to autism. The hard stuff- their own beasts they wrestle. I will share about struggles my boys or I have due to the world in response to them being autistic. The world has a lot of growing to do to include and understand the Disability Community.

Every day I’m learning more about who I am and how I want to be. Sharing in response to looks or behaviors that challenge societal norms are not ok - for me. I love advocating for my boys and so that the world can understand them and people like them better. I want to do right with my words. It means everything to me- and I am still a work in progress. 

Aren’t we all my friends?