Dear Friends,

I am warning that this might be a difficult post to read. I try to be sensitive and careful in how my public posts might affect you. However, I believe that this is important to share. I am not the first to express such views. And I am not claiming to speak for anyone but me. Please know that.

I hate being a nonspeaking autistic person. My recent sadness has been about really being confronted with that truth. It is a cruel disability. I have no patience for anyone who has not lived this reality who tries to comfort themselves with platitudes about this being a gift. My reality can no longer be subsumed by false narratives crafted for the comfort of others.

I want to be fixed. I am broken. I can’t even do most basic things on my own. My compulsions are at times disruptive and even dangerous. My gut hurts almost all the time. I am broken.

That is not to say that I don’t deserve to live. It is not to say that my life is worthless. It is not to say that society can’t improve in accommodating people like me. Of course I deserve and will keep seeking a fulfilling life, with supports and efforts to do what I can to be an advocate for nonspeaking individuals. Of course I see us as people who are just as worthy as non-disabled people. We are here and we deserve dignity, respect, and better opportunities. We have a lot to celebrate in our lives, including the more positive aspects of our autistic brains. I can value the life I have now and also grieve for how fundamentally difficult it is.

This doesn’t mean I am saying that nonspeaking autistics shouldn’t exist. I am annoyed that I even need to cushion my truth with so much explanation and disclaimer. If you don’t have the mindfulness to grasp the nuances of what I am saying, I doubt I can explain it enough for you.

I appreciate you reading this with an open mind and heart. It might upset you. But it is my right to express it.

Your Friend,

Danny

Dear Friends,

I had a bad case of the blues last weekend. I was so low and down. It was so suffocating. This was similar to how I felt on my birthday. The sadness had a heaviness that sat on my brain. It was so painful.

I have had depression before. I have experienced grief. I have been deeply sad. But it is relatively new in my life to experience such physical manifestation of my sadness. By that, I mean that I have started showing sadness on my face and feeling heaviness in my body. It is strange.

I did experience this after my dad died. And again when visiting my uncle in Japan, and looking through my grandmother’s things and realizing more fully that she had died and I would never get a chance to know her better. And when visiting elderly relatives in Ireland for what I knew was the last time. I also cried, which is very rare for me, when I heard that Tara was considering applying for a job elsewhere after we had gotten fluent. But that is all over the span of seven years.

So this is still an anomaly for me. And I am not sure how to cope with it. It feels so all-consuming. It feels like there is no way it will get better. And yet this last bout lasted only a few days. So strange to have such a warped sense of perspective without overt dysregulation.

I also must say that this is different from the depression that I experienced before spelling. That felt more chronic and yet less intense. It is complicated.

I notice that my compulsions were so quiet during my sadness. That was the only good part. It was kind of nice to have a break from those. But I just felt so flat.

My family was so lovingly and kindly compassionate in that they didn’t try to force me to cheer up, but listened and gave me space and gently showed me they cared. Tara encouraged me to watch the sunset with her one night. That felt like a balm. And two good friends helped me during our regular online hangout. I also went surfing with Waves 4 All for the first time since breaking my arm, which felt great even to my sad self.

I am better now. Danny is back, compulsions and all! I need to figure out more how to cope with such heavy sadness. I have a lot more to say about it.

How do you handle such feelings?

Your Friend,

Danny

Dear Friends,

Wow! I just had one of my favorite ocean outings!

This morning, I swam/snorkeled the farthest I ever have from shore. I am so proud! We swam from La Jolla Cove to the kelp forest area just by a buoy marking a quarter mile from shore. It was a gorgeous day with awesome visibility. We could see the bottom the whole way. I might have been intimidated if I couldn’t see what was below me, but luckily today it was so clear.

The kelp is so peaceful. There is so much life around the long elegant kelp towers. I saw my first tope shark! It was so beautifully winding around the kelp.

As we swam in, feisty sea lions swirled around us. I always love seeing them.

Our mom observed us from the shore. She was so impressed with my swimming!

Thank you to Tara for being willing to let me try this new milestone. I feel so empowered. I can’t wait to go out again next week!

Your Friend,

Danny

Dear Friends,

Another ocean day! It was such a nice, sunny, summer’s day. It was so nice to get in the water!

I am feeling so much better. A mellow week helped me rest up. And I was so ready to end this hot week with water time! So I was all smiles and giggles and some singing in the car on the way to the beach.

The water was so refreshing and clear. We swam today instead of snorkeling, because I wanted to practice my swimming skills, and I lasted thirty minutes. It was so tiring but satisfying. We stayed close to shore and Tara made sure we took regular breaks to just tread water. That helped.

We didn’t see as much wildlife as usual. That is too bad, but it happens. We saw some leopard sharks and rays and fishes. The feeling of swimming with other animals is so thrilling!

Then of course burritos, which we took to eat on another beach. That is the best epilogue to ocean time.

I am so glad I felt good enough to swim in the ocean today. It is so soothing to be immersed in the sea!

I hope you get to do something you love this weekend!

Your Friend,

Danny

Dear Friends,

I am much calmer now. Thank goodness. That was rough. And I am still a bit on edge, but I am managing it.

Honestly, I have very little idea what triggered it. There are many possibilities. But what really helped me internally was knowing so many of you feel like I have helped you. I am still feeling down about the barriers to pursuing a career that will allow me to use my brain and make a significant difference in the world. I am so limited by my disability. Everything I do must be with support. So I can only do a tiny fraction of what I want and of what my brain is capable of.

So being reminded that I have still done good work for others does help. Thank you for reminding me.

I want to share some photos from my actual birthday and also from a fantastic pool party hosted by my friend Jake. I was so down on my birthday, but my family tried so hard to make it memorable. The pool party was the first time that I felt really calm after my most recent dysregulation flare-up. Being with friends and in water helped me feel relaxed.

That is all for now. I am processing a lot. I hope you all are having a good start to the week!

Your Friend,

Danny

Dear Friends,

Oh my goodness. I have been having a terrible time. It is the worst dysregulation in a long time.

I could barely enjoy my birthday party on Saturday, though I was so grateful to have some of my best friends with me. It was such a nice evening. But I was all swirling on the inside. It was so hard to feel like I was ruining my own party. But my friends around me helped me feel less alone. And my family prepared such a feast and a lovely garden hangout setting. So I still did enjoy it.

But it has been so awful since. My OCD is through the roof. My throat aches from shouting. My body feels so inflamed. My mom is so frazzled after two straight days of this intensity plus a few days before that of less extreme but still intense dysregulation. My dogs are drained from the stress.

I am so forlorn under the energy and rage. It feels like a monster has taken over and is making me act like a bully. I hate stressing out my loved ones with my antagonistic behavior. I know that we don’t usually say “antagonistic” or “behavior,” but my dysregulation sometimes expresses itself as teasing or harassing. I don’t mean it and it is so hard to control. It is so awful to be the one causing havoc, but I know it is not fun to be around the havoc, either.

I am so hating this part of my disability. It is so scary and confusing. I know that so many deal with this or worse. Why is there not more research on this? Why is there not more help?

I am not seeking pity. I just need to express what I am experiencing.

Your Friend,

Danny

Dear Friends,

I am 40 today! That is so wild. I am in disbelief.

Frankly, I am struggling with mixed feelings. I am surprised how difficult this milestone feels. It is a lot of grief for the decades spent without communication. It is a lot of dismay for how difficult my life still is. It is a lot of apprehension for how challenging it will be for me to achieve my dreams into the future.

I am sort of in a down mood over all of this.

Yet I know that I have so much to celebrate. I am having a positive impact on the world. I am surrounded by friends all over the world. I have a loving community that helps me thrive. I have done so much more than I once dared to dream. I am loved and have a beautiful home.

So I am trying to celebrate all of that. I don’t know why I am in such a funk. It is not typical of me. And I don’t like it. I want to focus on the brilliant things I have done and experienced in my five plus years with communication access in my regular life.

Thank you for being such a big part of this new life. It is still beyond my comprehension how many of you are part of my community. I am so excited for all I will do and share with you in this new decade!

Your Friend,

Danny

Dear Friends of Danny,

Danny has declared: “I am cranky today.” He didn’t get sleep last night. Today he’s struggling because “I want to do so much, but I am so tired.” So there’s a bit of dysregulation bubbling up, on top of whatever it was that prevented him from sleeping last night.

What’s helping him in the moment is a strategy he and his therapist came up with, to really get him into the thinking part of his brain. Informing us that his brain needs way more than we’d realized, he suggested transcribing* foreign language literature *while* listening to intellectually engaging podcasts. Because of course that’s relaxing… 😉

So today, he’s transcribing excerpts from Voltaire’s Candide, in French (which he has never studied), while listening to The Titanium Physicists podcast. This is his 3rd time using this practice to help regulate himself. I’m so impressed with how deeply it engages his attention, and it’s something he can do on his own once someone sets it all up for him.

He gave me permission to share this. We’d love to hear of any similarly intellectually challenging regulation practices you’ve tried!

Danny’s older sister bear,

Tara

*Our dad taught him 10-finger typing when he was a kid – even though it’s not something he can use for purposeful communication, he can transcribe easily

Dear Friends,

At long last, I got back in the ocean! Wow. I needed that. Good old vitamin sea.

It was so crowded getting to the beach. I guess it is the last hurrah before schools start. But we managed to find a calm and uncrowded spot in the water with tons of leopard sharks and guitarfish and rays. It was so mesmerizing to swim above them. It was surprisingly easy to snorkel after not doing it in several months. It was so good to be back in the ocean after the colder months and then my arm injury. It was so amazing!

We didn’t bring a camera in the water, but imagine rows of guitarfish and rays half-buried in the sand, with majestic if small leopard sharks gracefully winding above them. It is a gorgeous world under water.

I am so glad to be back to ocean activities. I missed being in the sea!

Then we got burritos. So it was an amazing day!

Wishing you all a great weekend!

Your Friend,

Danny

Dear Friends,

Well, after another wonderful Motormorphosis, I had another panic attack on the plane home. It was so unexpected. It was disappointing. It was so scary, too. But it was also a good experience to go through, because I handled it much better this time. My support team responded more confidently this time and helped ground me right away.

So I was able to calm down more quickly and felt a lot less shame than last time. It helped to have more tools in our toolbox than two years ago, like more experience coaching my body and knowing that intellectually stimulating podcasts help get me back into the thinking part of my brain. Plus Tara was more calm because she had seen this happen once before. That helped my mom be calm, too! Plus my mom has learned a lot about co-regulation in recent months.

This was still disheartening. Tara had been very mindful about ensuring my regulation as we boarded. Yet it still happened. It came out of nowhere. I need to process that.

I think I need to accept this as a possibility in all my future flights. I had hoped it would just be a one-time fluke. So that is a letdown.

But Tara and my mom could help me quickly. So that makes me less afraid of future episodes.

The crew and other passengers were surprisingly chill about it. That helped a lot, too.

Oh well. We keep learning and adapting. That is how this disability is.

I still cherish this Motormorphosis experience! I am proud I am more resilient than two years ago.

Your Friend,

Danny