It’s been a YEAR. My studio has become dusty and filled with items that do not belong there. Like legos. And someone else’s banana peels. I’ve been going through some major self awareness stuff and it’s just taken a lot out of me. I am not one to share struggles, or anything that is hard for me. However, this is different. I want to share with you what I’ve been going through and my learning process in the hopes that it may help someone else not feel as alone as I have been feeling. And to kind of say why I’ve been MIA.
I haven’t been able to create for a very long streak like I’m used to- for a very long time. And it hasn’t been because of Covid. Instead I’ve been learning of all the beautiful and challenging ways my family is neuro-divergent. I can say it’s become a giant relief to realize we are, or at least my son and I have been officially diagnosed because now so much makes sense about how we experience the world around us. And each other. I also wanted to share this particular part of me here because I get so much feedback regarding what raising a family does for one’s creative endeavors. Basically, it can kill it and as mothers we have to suck it up. So deal. (So we’ve been trained to think this way). But I haven’t been dealing well and it’s been a struggle.
Since learning that both my son and I are autistic and carry other neuro-divergent traits, it has helped me understand why I parent the way I do. Understand myself in ways that I’ve never been able to before. And understand more about my son. So this, on top of Covid, it’s been a very very long year of processing and sitting with new realizations while mostly my mind explodes. It’s all happy relief AND it’s exhausting. But also, the level of self acceptance that’s been developing within me is what now keeps me going. It gets me up in the morning with a full heart and a bravery to take on the day no matter what happens.
In the midst of all of this, my head space for creating hasn’t had much room. It’s been painful for me on and off and has led to some severe depression. I didn’t know depression could still be severe even if one was able to still get up and shower and eat. Sort of. But my depression has kind of existed in me, creating these kind of stabbing feelings, reactions, not being interested in my own self care. Not in a beyond the bare minimum kind of way. I can go through the motions and care for my children but that is always immediate and needed. But my own self worth was dying a long slow death and settling in with the dust bunnies. Even the dust bunnies in my studio didn’t want what was left of my shell of self.
It’s been about a year since I was sitting in on a zoom call with my son’s diagnostic behavioral pediatrician. She was saying words and they floated by my ears like muffled birds. I was aware of the words but they weren’t getting in my head. All I could think was, “when can this call be over?” But her face was kind and comforting so I focused on that best I could. The anxiety of sitting still and trying to zero in on this very important call was about to tip my inner scales of sanity. Not that I had much to begin with anyway. I’d been living off the fumes of my children’s energy since they were created. So….
I still didn’t fully understand because all I could think of was- “but he makes good eye contact. He is happy, sometimes. He’s very funny. He’s compassionate and empathetic… Odd behaviors? Define “odd”. And what does that mean anyway?”
Autism Spectrum Disorder. ASD. On the spectrum. Spectrumy. These are all words and phrases, titles and labels I would soon find comfort in. Both much to my surprise and relief.
At one point I finally said, as if to push against this wall of imposing statements of “your son exhibits sign of ABC, XYZ, etc. Which are autism traits. And some ADHD traits.” The clouds in my head where getting thicker and I just wanted to shut it all away. I wanted to say- “Hey! He’s fine! So he lines up his toys. He plays by himself. He has rigidity to his thinking. He’s hyper focused on his agenda….” I personally was proud of all those traits in him. His character has always been strong. A force actually. Exhausting often- but boy I loved these things about my son. In fact, I share many of these traits. His father shares some too. The stubborn ones anyway 😉 But these traits, the ones the doctor was describing… she may well have been talking about me. So I didn’t quite understand just yet.
I finally poked my head out of my cloud and said, “I just never thought about any of this because these are not the “classic autism traits” I’m familiar with.” FYI- typing this now kind of makes me want to puke. But I’m all about honesty so there you go. I continued with, “And him and I are so similar……” The doctor responded with “it’s very common for parents to discover they too are also on the spectrum.”
(Btw- traits “I’m” familiar with come from my own limited experience with knowing autistic individuals by only working “with” them. I’ve learned that no, I didn’t really know anything about autistic people because of autistic people. I knew only what allistic (non autistic person) people were telling me about other autistic people. So really, I knew nothing so much so that I didn’t;t even understand myself or my son. Until this phone call.
The above image shows just some autistic traits. For every single autistic person, the traits come up differently and they can shift here and there over time.
Seeing this particular graphic made me feel euphoric. The rainbow, the circle, the dots, all splayed in an informational way that I could really absorb. And not having to struggle in how to explain “the spectrum” to others.
It took me a long time to absorb all this info about my son and how best to support him. Please take note that I am not saying “cure” him or even “help” him. But support. I also realized, I really needed support. My husband needed support. We had a lot to learn and still do. I was continually looking for things online about what the F I was suppose to do to cope with the energy in our family and how quickly our son could go into meltdown mode. Not tantrum- but MELT – DOWN. It melted my brain these meltdowns. I’d sometimes respond in ways that made him feel worse and me pretty awful. My tolerance for noise – the sharp quick angry kind, the constant touching of my body and hanging from me like he was my monkey child and I was his tree. And his intense angry responses to when I’d call him out for his first behavior. God. We’d get into a spiral of what the hell am I going to tackle first? Which behavior do I need to pay attention to first?!?!? We were drowning. My depression was creeping back with a vengeance. I distracted myself in anyway I could in order to find solace. Just to come up feeling more empty than before. We were drowning and I felt like I was failing on all fronts. As a mother and a wife. I would later learn I live with long term PTSD and have some intense auditory processing differences that make dealing with loud sudden noise while also under stress can be debilitating and send me into a meltdown at times.
But, we some how survived the winter. I felt like I was hanging on for dear life until I could see the first blooms of anything. And then I got my COVID vaccine. Once that happened, I was in awe of the lightness I felt in my body. For all the reasons. You know all the reasons. I traveled 2 hours for both vaccines twice just to get it a week earlier than what was offered in my area. I was that excited.
I finally felt a shift in my spirit and like I could see more clearly and I was literally filled with hope and energy that I could put to use.
Sometime in April as I was trying to research info on how to support our son, I kept instead landing on videos of autism traits in adult women. I finally took a look having no idea that it was a thing. Again, typing this now, I’m in awe of my own limited thinking. But we don’t know what we don’t know.
As I watched one video after another which has turned into dozens by now, my mind has been blown away. In every single video I see, I’ve felt like, “oh! You do these self soothing things too? Oh! And they make you feel better too? (Stimming)
Oh! And you feel super awkward all the time but you know how to make it look like you are ok with everything all the time too? (Masking) and then experiencing social burnout.
Oh! you have trouble processing information too if someone is talking fast, loud noises around you, can’t read very fast, need people to take more breaks while they are talking, does better with visual directions instead of verbal directions? (Auditory processing disorder- which I was diagnosed with in the spring of 2000)
Oh! You love bright colors and textures and to stand out but also be a wall flower? (Social interactions, anxiety, special interests).
Oh! When you get into a new hobby you GET INTO A NEW HOBBY AND GO ALL IN? Me too. And many of them and I will talk to you about it till the cows come home if you let me. (Special interests)
Oh! You have trouble processing your emotions (I mean who doesn’t, right?) But I mean, it’s like an intensity that can be a bit overwhelming to the point of interfering with day to day life? Ya, me too (identifying emotions)
Oh! You also find various sensory things in your environment so overwhelming that you can’t focus on a task until that sensory situation is calibrated to your comfort level? (Sensory processing)
Oh! You too have interesting memory things happening? My short term memory can be shit. I have two kids and I blame them of course. But my long term memory. Descended from elephants I am.
There are so many more but these are just off the top of my head.
Now that I have a better understanding of where I’m at, I’ve been able to accept myself more in terms of what I need support with. It’s always been pretty uncomfortable for me to ask for support because I’ve been used to it being met with contempt, grumbles, eye rolls, or people just not coming through. Asking for support used to be painful. But now it just feels more practical. This also goes for asking for support with my son. And knowing when to support him. I don’t always get it right but at least now, I feel like I can be more forgiving of myself when I don’t get something right.
I’ve known my whole life I see things differently than others. Like in a very very different way where I’ve mostly felt misunderstood and alone. Now I know why. I always thought it was because I didn’t pay attention enough, because I wasn’t enough, because I was too much, because I just didn’t “get things” like everyone else around me. I know I’m not wholly unique in this struggle. And that’s why I’m sharing this whole journey of true self discovery and especially why I’m doing it here. It’s very vulnerable of me but now that I have such clear understanding about myself, I don’t care what anyone thinks. But if my findings can help someone else question and find answers for themselves, that’s why I’m here.
Some links that have helped me that may help you too.
This is really just the tip of the iceberg and there is so much more behind this for me. It’s been super exhausting to try and keep who I really am hidden as I tell myself, “no, I’m too much for people. Don’t say that, don’t do that, etc.” This just feels better to let it all out as I move closer to my authentic self. I look forward to sharing more about what being autistic means to me and how it’s helping me manage my life more fully. Especially as it pertains to my fiber work ❤️
Now, back to my plant dyes 🤗🌈🍀
2 thoughts on “Autistic Rising”
oh rachel, this is beautiful and thank you so much for sharing this story. it must be so wild to have a shift in perspective and understanding about how your own brain works! and i imagine having this info and resources is incredibly helpful and enlightening. see you soon my friend!
Thank you so much Cal❤️ it’s been an amazing time of self acceptance and letting go of so much while also grabbing onto things I was always afraid to do.