Labels Save Lives

I recognize that there are A LOT of people out there who believe we should stop using labels and simply embrace each other as we are. That’s a lovely thought, but it hasn’t played out in my life in any positive way. The trouble, as I see it, is that our differences make us stronger, therefore, ignoring difference hurts us all. Labels are neutral categories that help us figure out our identities. We keep adding new ones to accommodate differences and that’s ok. Then we assign morality to them. That’s why the meanings behind labels can change over time.

So, how do labels save lives? I’ll give you one way. Labels serve to neatly categorize huge ideas into compact spaces. If I were to ask, “what is autism?” that’s a big question. But, if I offer a list of human traits and ask you to label them as a group, it might be easier. Think about things like sensitivity to stimuli that is neither respected nor understood by the general population because it comes across as too much or too little, focus on more concrete thinking that is straightforward and genuine, and the tendency to experience the double empathy problem. I could make a checklist and say, if you check off 90% of these items, you might just be Autistic. The label is Autistic and the traits are the evidence that point to the label being accurate.

My story is much like that of other late-diagnosed Autistic adults. My parents knew I was Autistic from a young age but could not access diagnostic services for me. So, they ignored it, suppressing my traits through behaviorism. I grew up thinking something was terribly wrong with me. I suffered through bouts of suicidal ideology from a very young age. It felt like no one understood me. I was just too different. So little about my life actually made sense until I went through the autism evaluation process as a parent. The questions that the doctor asked made me realize how many Autistic traits I had possessed all my life. I sought out my own evaluation and ultimately received a diagnosis. I was Autistic. I am Autistic!

This affirmation of my entire life and being changed everything. I knew why I thought the way I did. I knew why I was always a step apart from what others were doing, feeling like some sort of bystander to my own life, manufacturing a façade that allowed me to be the alien behind the mask. I started to join groups for Autistic adults and learned even more about myself. I found camaraderie and purpose. I embraced the social model of disability, noting all the points in my life where forces outside of myself stood in the way of my progress. I recognized the symptoms of trauma within my psyche and came to understand that this trauma was the source of my debilitating anxiety – anxiety, in fact, that I didn’t realize I had until other Autistic people described what anxiety looks like in day-to-day life. Then, I started medication. Finally. After decades of misdiagnoses and drugs that never helped, I got the right medication and the right support.

And, you know what? I no longer descend into suicidal ideation the way I once did. I don’t dwell on the troubling parts of my life and do battle against the little voice in my head telling me it would be easier on me, and everyone else, if I weren’t here. Recently, I had an especially difficult week. One evening, while lying in bed trying to fall asleep, it hit me that I wasn’t perseverating on suicide. It was like there was a bottom under me. I had caught a ledge in my mind and I wasn’t sinking any further. I can’t remember anytime in my life when I’ve felt like this.

So, yes, I fully embrace the labels that describe who I am. I use them in healthy ways to understand myself and connect with the communities that have become literal lifelines for me. And, I reject the idea that labels are bad for us. I hope you understand why.

Parenting Gently While Neurodivergent

It’s Autistic Acceptance and Appreciation Month, and I am here for it all month long. So, my first article in the month of April had to be something for my neurokin.

Acceptance is appreciation, and the high value of appreciation is such that to appreciate appreciation seems to be the fundamental prerequisite for survival. Mankind will not die for lack of information; it may perish for lack of appreciation.

Abraham Joshua Heschel

As a neurodivergent parent, do you nearly buckle under the strain of:

  • Seeming to be a step behind in planning and preparation even when you try your best?
  • Having difficulty fitting into social situations with other parents?
  • Struggling with the chaos and uncertainty of parenting?
  • Getting frustrated as chores fall by the wayside and responsibilities get neglected?
  • Doing your best to remember the things you want to remember?
  • Experiencing sensory overload on a regular basis?
  • Feeling like your temper is always set at 99 about to hit 100?
  • Managing your own needs while addressing the needs of your children?
  • Facing burnout, meltdown, or shut down?
  • Running out of spoons by breakfast?

Let me stop you right there and say, welcome, you are definitely in the right place. I feel like I am a whole, entire, hot mess all the time even when people on the outside looking in tell me it appears like I have everything together. The only reason there seems to be any semblance of order is because I become more and more rigid the more control I lose over a situation. But, the more I try to get things under control, the worse the situation becomes. It’s defeating. The smallest things set me off and I feel like there’s no escape. Taking a little time off here and there doesn’t help, because my brain won’t stop going. All I do is worry. I’ve had to start taking medication to get my brain to slow down enough to sleep. I had reached a critical point where I was about to go downhill fast and I had to save myself.

Ironically, I’m great in an actual crisis. Totally calm and clearheaded, but I fall apart completely in the aftermath and shutdown for days. Somehow, everyday life wrecks me and, even with coping skills, it’s a struggle. Then, I went and became a mom. My stress level went to about 5,000% and my coping skills barely cut it most days. I want you to know that I get it.

So, in the midst of all these difficulties, why bother to attempt peaceful parenting? This one’s easy. An aspect of my Autistic brain – that seems to be fairly common among Autistic people – is deep empathy that results in a strong orientation toward justice. The more I’ve gotten to know myself and embrace my neurology, the less tolerance I’ve had for cruelty, and children bear the brunt of so much cruelty. Laws in the United States protecting children are weak at best and children become outlets for their parents frustrations. I can’t take it. I can’t watch the videos that go around where children are being harmed in some way. It’s too much for me now. So, with my own kids, that need to treat them with decency and respect planted itself front and center in my mind. It’s an inherent imperative now. But, it’s a serious challenge to remain conscious about my parenting when my brain is in turmoil trying to survive this neurotypical world.

That’s why I have fallen back on my natural inclination toward patterns, routines, scripts, and formulas to give my children the very best I have. All my life, I have felt like there’s a virtual rolodex (I know I’m dating myself here) where I record information I need. Then, when I need it, that rolodex goes flying through the cards and lands on exactly what I need. I don’t see the rolodex in my mind eye, but I feel it. When I write articles for this blog, I often do so from that perspective. My pieces are how-tos. “Do it this exact way and see how it goes. Then adjust as needed.” I love step-by-step instructions, like the Three Rs and the Five Essential Steps of Emotion Coaching.

I want for peaceful parenting to be accessible to my neurokin. I don’t want y’all to see it as an amorphous concept that’s impossible to implement. A helpful goal is to put together a mental toolkit of step-by-step plans for how to address different issues and use those as a frame around which to pin your thoughts and intentions. For me, it has become almost second nature to call one of my solutions to mind when my children are having a hard time. Having a plan I can actually follow-through on helps me feel confident and calmer than I otherwise would.

Here’s a collection of Peace I Give articles that I hope will offer you a start on building your own tool kit:

My heart is with you, my neurokin, as you work toward building the resilience in your kids that they will need to brave a world that does not center their best interests.