A nice man was in there shopping and when he heard that I was the author, he immediately bought the last copy and asked me to sign it. That was cool and it checked off a goal of mine that I made several years ago: to see my name on the spine of a book in a bookstore.

It’s just a reminder to myself and hopefully you too that setting goals that seem a bit out of reach helps you push yourself to new heights. Unfortunately, today, we forgot to get a picture of me with my book in the store before the customer left so I didn’t get to document the occasion, but it sounds like we might get to do a book signing there so I’ll have another chance.

Cheers to a new year and new dreams!

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I hope you are all doing well. My thoughts today are related to a lecture that I just wrote for a neurodivergent advocacy conference that is happening this week on-line (The Nurture Programme). The conference theme is “radical acceptance” of those of us whose minds function in a different way than the majority. 

My topic was about how easy it is for those who have limited verbal language skills to be overlooked or ignored in our society, effectively making us invisible or anonymous.

I love the term, “radical acceptance.”  My understanding of the word “radical” is something that is dramatically different from the norm. How cool would it be if society suddenly began accepting and celebrating the uniqueness of each person rather than trying to get everyone to conform to a predetermined standard that motivates us to try to be different than who we are? Who gets to decide that standard anyway? 

It would indeed be a radical idea to always find what makes our friends, family members, colleagues, and even competitors different, special, and unique. 

Isn’t it the contrasting colors, textures and perspectives that turn a regular painting into a masterpiece? The world could be a masterpiece. It would take a radical approach.

Be radical. 

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Today is the Motormorphosis conference in Herndon, Virginia. For those who aren’t familiar, it is the flagship conference of the International Association for Spelling as Communication (i-asc.org). This is a wonderful organization that help people with limited verbal language communicate by spelling.  I was supposed to be at the conference but got sick with Covid this week so we had to stay home. But my older brother Ben and my sister-in-law Becky are there on my behalf. They showed me what it was all about over a FaceTime call. It was fun for me to see other people with autism like me who are using their talents to advocate for improved awareness of our abilities.

The feeling that I got, even over the phone, is that these are my friends. In school, I never really had a friend. I’m not trying to write a sob story; I’m just telling the truth. There were plenty of people who were very nice to me, and I even had some peer support advocates who were my age and were very kind. But that is not the same.

A friend is someone whom you can share your feelings with, and they understand you. They want to be around you just because. Autism is a stingy beast. It takes away that capacity to be able to communicate socially and that makes it hard to interact with others.  And even though it would still be tough to have a typical friend relationship as most people would define it, it makes me happy to just know that there are others out there who truly understand me. 

So, cheers to my new non-speaker friends at Motormorphosis in Virginia!  I hope to meet you all in person someday soon. Because I know that you know that just being together is enough.  

Aaron  

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It has been a while since I have written a new blog post. I guess I’ve had a bit of writer’s block and couldn’t think of anything that I thought would be of interest to others. But someone asked me a question on Facebook, and it has given me some new ideas. So, thank you to that person who reached out to me. She wanted to know how I learned to spell before I knew how to express myself with typing. I didn’t start typing until I was around fifteen years old, but my relationship with letters goes back to almost the beginning.

I was between two and three years old when autism began declaring itself in me. I really can’t say if I was unaffected before that. My parents didn’t see any outward signs of it. Anyway, this is the same time that I was learning things like the ABC song and watching Toy Story. As autism took over, those things got trapped in what I would describe as a very sticky mind.

My mind seems to me like a spider web that captures my thoughts and suspends them in midair. I think most brains act as better filters or filers of thoughts and memories. Those brains file memories away in a deep recess somewhere and occasionally conjured them up after an appropriate stimulus. My brain doesn’t seem to have deep recesses, and my memories are always swirling on the surface. I remember things from very early in my childhood that others apparently can’t. It is a blessing but also a curse because all those thoughts are on a carousel in my mind that never stops circulating.

Anyway, letters occupied a large chunk of that space early on, and they became almost like friends or comfort items. I had bins full of plastic or wooden alphabet letters, and I knew every one of them, including what color they were and what set they came from. I would get very upset when any of them got lost.

When I started with ABA and began learning to spell simple words, I became even more fascinated by their power. I started thinking about letter combinations constantly and began experimenting with different sounds. I also began listening for new words or watching on building signs or billboards. I never had the patience to read on my own, but I was learning how to read in my mind just from my environment.

In school, my teachers tended to set the reading bar very low and never raised it by much because I wasn’t able to show them what I knew. But thankfully, my parents always read me age-level books which kept my mind stimulated and learning new things. I especially listened for new words and never forgot them. I figured out what they meant from the context and thought about how I would spell them. The alphabet has rules, and once you figure those out, most words make sense. Of course, the exceptions have to be memorized which I did once I started typing, either because my parents corrected me or I would watch the computer prompts as I spelled and then corrected myself as I typed.

I think most of us non-speakers figure out on our own how to read and spell long before we can actually teach our bodies to cooperate. That is why it is so important to assume competence and teach to our age level. It would avoid so many wasted years and a lot of frustration. I am proud to be part of a group of people who have shown such life resilience and am so happy that many of us are finding our voices. Hopefully by making our voices heard, things will be better for those behind us.

Thanks for reading.

Aaron

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I have been pondering a lot lately about what living in a speaking society means to those of us who are non-speakers. I recently learned that term, “non-speaker,” and how it is different from being “non-verbal.” I am verbal.  I make lots of noises, sounds, and words. I can communicate simple things with words, but I am hindered dramatically when it goes beyond a very basic level.  I certainly am unable to have a back-and-forth conversation about anything useful or important. So, in a speakers’ world, I am dysfunctional, a “non-speaker.” 

Human society is set up for speakers. Non-speakers are almost unrecognizable as people. We are more like dolphins, who scientists say are quite intelligent on the inside.  But what use is that to humans if they can’t understand how to communicate with the dolphins? In that setting, dolphins then just become like trainable pets.  Teach them some tricks and call it progress.  

We, non-speakers, are like that.  We are intelligent but can’t speak your language.  So what use are we? Put us in school, teach us a few tricks, and call it progress?  It is not helpful or reasonable to teach us to try to communicate using the constraints of verbal language. You might as well teach a dolphin how to speak.  No matter how hard I try, I don’t think that I’ll ever be able to speak my mind. And yet, I am intelligent and can make a contribution to this world— if only speakers can become listeners instead.  

There are so many non-speakers out there, and we are discovering our own way forward by communicating in writing. Again, speakers may find it relatively easy to just write down what they are thinking.  But for us, writing is still unnatural and requires a lot of training and effort. Our motor skills are challenged, and our bodies don’t listen to our brains very well.   However, with time and patience and a lot of perseverance, we can learn to get our thoughts out of our heads.  Thankfully, more and more of us non-speakers are finding sympathetic teachers and trainers who are helping us break out of our acorn shells.  

Watch out speakers’ world, some great oak trees are growing!     

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Ever since my diagnoses, measurable goals became part of my daily routine. That is a major part of ABA therapy: to break apart various skills into defined tasks and then to measure success of mastering each task before moving on to a more advanced skill. My therapists recorded everything that I did in large binders and constantly reviewed the data. Their motivation was to see me move from task to task and to check off the skills boxes.

The challenge for me with ABA was that these goals were not necessarily my goals. They were placed upon me by external forces. For example, it was never important to me how many blocks I could stack on top of each other. I worked on it so that I would get some external reinforcement like a high five, a treat, or most reinforcing of all, the chance to stop stacking blocks. 

The harder the task became the bigger the disconnect between what I wanted and what I was being asked to do. Ultimately, I think that is why I stopped progressing in that program.  I was never bought in.  Both the goals and the motivators were externally derived.  For a goal to be motivating, it has to be internal.  I have to choose it.  I have to want it. I have to be motivated to achieve it, and accomplishing the goal has to mean something to me. 

As I learned more about myself, I was able to understand what I really wanted and needed to be happy. At that point, I could set goals that meant something to me, that would move me internally to become better and move closer to who I want to be.

My biggest goal is to become an effective communicator. But, as hard as I have tried, my disability has prevented me from being able to use verbal speech to communicate well. So, I had to make a choice: keep struggling to speak and fight against constant frustration, or pivot and find another way.  When I discovered that I could get my thoughts out of my head by typing, the pathway to my goal changed.  My goal hasn’t changed, but I realized that the method to achieve it is different than I had originally envisioned.

It feels really good to look back now at how far I have come. It reminds me of the first time I climbed a 14,000-foot peak. When I looked down and saw how high I had climbed, it felt awesome. I had the same feeling when I crossed the finish line of my first marathon, and more recently, when I finally figured out how to downhill ski independently. I will feel that same exhilaration soon when I hold my new novel in my hand for the first time.

I know I can do hard things!  It takes me longer and I usually have to use unorthodox methods to get there, but if I want it bad enough, I can do it!

My advice to parents and teachers of kids like me is to set the bar high, not low. Challenge us! Figure out what would really motivate us and then don’t give up on us until we accomplish it. My parents have definitely helped me to never give up on myself. It makes me excited for the future. 

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I have mentioned in a previous post how I have frequently felt jealous of others who are my same age but were having vastly different experiences as they matured. An age-level appropriate education is one of those experiences, for sure. I would have loved to have been challenged in high school with real grades, AP tests, and college-entrance exams. But no one knew that my mind was capable of advanced learning, as my communication skills precluded me from showing my intelligence. 

So, I was stuck in a classroom that was labeled “self-contained.”  What an appropriate name!  Yes, everything that I knew and all my aspirations were definitely tightly contained within my own self. Personally, I think all kids with limited language should get to be included in the general school population and be given the accommodations necessary for them to succeed in that environment, even if the gains are not as easily measured as with their verbal counterparts.  Assume we can learn! That should be the default.

The other thing that makes me jealous is not having the ability to form normal social relationships with others. Communication is the basis of social interaction, good or bad. When the mechanism for communication is severely limited, socialization shuts down. I think that a lot of people assume that if you have autism then you shy away from other people and prefer to be by yourself. It is also assumed that we cannot empathize or put ourselves in someone else’s shoes. I would say that for many, if not most of us, those assumptions are inaccurate.  I cannot speak for everyone, but for me, it is really my communication challenges and social anxiety that makes it difficult to have friends, not my desire or my emotional capacity. 

So, I’ll try to end with some practical advice to help us feel included.

1. Assume that our minds and emotions are intact on the inside even if that is hard to see when looking at our “shells.”   
2. Even small attempts at inclusion are appreciated. Sometimes we may not reciprocate the effort, but we always notice it. 
3. Find things that we can do together or any common interests and figure out a way to do them.  It might feel like the interaction is one sided, but even parallel play is better than no play.   
4. See us! Say hi. Give us five or a fist bump. It feels good to be acknowledged. 
5. When we show our talents, share them with the world so that there can be a collective gain in the understanding of our potential. I think if more people can learn to see our strengths instead of focusing on our weaknesses, then life will be better for everyone.  

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When I was diagnosed with autism as a young child, I had some verbal language. To clarify, I could say some words, but words weren’t about communication for me.  Words were more like objects in my environment like toys or stuffed animals. I didn’t understand how saying them out loud affected other people. I said them because when I did, my anxiety decreased. They were part of my anxiety-protection toolbox, and that was all. My thoughts were my thoughts, and my words weren’t connected. 

I started ABA therapy immediately after I was diagnosed, and, among other things, they started drilling me with new words. That was fine. I didn’t mind learning new words. But I had a much harder time in using those words to communicate an idea. Through repetition, I learned some phrases and memorized when I was supposed to use them so I would get reinforced for doing so, but there was still a big gap from what they were trying to teach me and how I was learning. I still didn’t see words as a way to communicate my thoughts. 

As I got older, my vocabulary increased, and I could repeat most words if I was asked.   I did figure out that people reacted certain ways when I said certain things and learned that I could meet my needs faster that way. So my communication became tied to two things:  meeting my basic needs and relieving anxiety. My thoughts were still very disconnected from my verbal skills. 

In the meantime, I was becoming increasingly frustrated because, on the inside, I felt like I was developing at an age-appropriate level, but no one could see it.   School then became a waste for me because I was stuck learning the same basic things over and over since I was unable to demonstrate that I needed and wanted to move on.   I felt like I was intelligent and had a lot to contribute but feared that I would be forever stuck inside my own head.    

As a teenager, I started working with Soma Mukhopadhyay who developed a method called the Rapid Prompting Method.  She works a lot with nonverbal kids, and her method does not require you to speak. She teaches you to spell out your thoughts and then writes them down for you on a piece of paper. 

When I saw my thoughts outside of my head for the first time, it was magical! Soma knew that I was in there and just expected me to be able to answer her questions.  Her belief that I was capable helped me to have more faith in myself and gave me hope.   

Since then, I have developed my writing and transitioned from her letter board to an iPad. My life has changed so much for the better because now I understand the power of words and how words can change the world. Even my words!

So, for all of you working with kids like myself who struggle with verbal language, don’t get stuck trying to teach the same thing over and over.  Move on!  Keep teaching!   I am willing to bet that the kids you are working with are absorbing it all.  Forget about spending so much time on speech and find a way to help them communicate. That is what matters. In the process, some of us are going to blow you away with what our minds can do.

Speech is hard.

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Behavioral meltdowns are hard, and they take a toll on everyone involved. For me, they are uncomfortable physically because of the stress on my body and chance for injury, but the emotional piece is even worse.  After the meltdown, I always feel embarrassed, disappointed in myself, and sorry for those who had to deal with it. That feeling can last for days or weeks after a meltdown that might only last a few minutes.  This is how meltdowns are different than tantrums.  

A tantrum is usually a strategy to get something that you want, like a toy or to get to stay up later.  It is a behavior that is positively reinforced if those around you, like your parents, cave into your demand. It is the “spoiled child” syndrome. Behavioral meltdowns are not like that. They are never in response to something that I want; rather, they happen when I can no longer control what I don’t want. 

Everyone with autism is unique and has different challenges and strengths, but I think that something that is very common, if not universal, is anxiety.   I feel a baseline level of anxiety all the time and go throughout my days using various strategies to keep it at bay.

 A lot of “experts” think that we perseverate on the toys or other items because these are the things that we really like.  But that’s not true. At least it wasn’t true for me.   It is not that I really liked those things. I needed them. Without them, my anxiety took over and led to a behavioral meltdown.  Those toys were like anxiety guards.  Believe me, I got sick of Toy Story toys and ABC letters as I got older, but I needed them around me to help me feel calmer.   Also, the verbal scripting, which I still do, helps relieve anxiety.  My pacing, which I also still do, relieves anxiety. These are some of my strategies. 

To me, anxiety is like the simmering lava of an active volcano.  It is ever present below the surface.   When something happens in my environment that is stressful and that I can’t predict or control or I simply just get too tired to use so much energy keeping my anxiety in check, my volcano erupts. 

So let me give a few suggestions to those who must help manage these behavioral meltdowns, either as a professional or a family member:

1.  Don’t take away the things that we use for anxiety protection. That makes it worse in a moment that we need all the help we can get. 
2. Gives us space and time in a low-sensory environment. 
3. Don’t take it personally. It’s rarely about you.
4. Don’t punish us for it. That doesn’t help prevent the next one and only makes us feel worse about ourselves.
5. When you see things escalating, try intervening with calming strategies before it’s too late.
6. It’s fine to teach us better coping strategies with ABA and other methods but let us progress to those on our timetable instead of yours. 
7. Don’t confuse meltdowns with tantrums. 

And some tips for the rest of you who might see a meltdown in a shared public space:

1.  Cut the judgment.  You don’t actually know what is going on or how to “teach those parents a thing or two about raising kids.” 
2. How about asking the parent if there is anything you can do to help, as opposed to the three usual responses of the disgusted look, the pity look, or the quick look the other way?  
3. If someone with autism loses control of their behavior sometimes, don’t assume that that is what they are like all the time and that they can’t be a net positive to the community. 
4. Be kind.  Smile more.
5. See us as intelligent humans with a lot to contribute and forgive our shortcomings. You probably have some, too. 

Thanks for reading. 

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