Category Archives: anxiety

Communication, anxiety and neurological instability.

One of the big complaints of skeptics who refuse to believe nonverbal people with autism can communicate is about support. They have significant doubts if anyone receives tactile support. In fact, if anyone receives tactile support they are sure the communication is fake. I think, to be fair, that sometimes it is hard to tell how much is the autistic person and how much is the aide, just by looking, but sometimes it is quite obvious that the support is just there for emotional support or anxiety control. It is minimal, a light touch far from the hand or arm and totally not prompting movement. My good friend likes a hand on his shoulder when he types. It gives him stability. If someone put a hand on your shoulder could you write accurately in a language you don’t understand but the other person could? I doubt it, but try and see if it’s possible.

But skeptics aren’t even satisfied with independent typing. I type with no tactile support, no prompts at all except for a reminder to keep going or to pay attention if I get distracted or pause too long. Still skeptics are concerned that someone sits a foot away from me and imagine that through some magical means I am typing their thoughts. If I was alone in the room, they say, then they could believe I was really typing my own thoughts.

I am somewhat fed up with this because they do not understand the nature of neurological instability and anxiety in autism. They have an innate bias in believing that autistic minds are not capable of understanding language. If that’s so, why bother to drill us with flashcards?

How many times have nonverbal people emerged from an inability to communicate, often due to a body movement problem, to show that they were hearing and understanding all along but were trapped and unable to show it?

My father, who is a scientist, talked about the unknown impact of emotional support on anxiety and performance and he shared the example of King George in the film, The King’s Speech. King George suffered from a terrible stutter. He was unable to speak in public without stuttering and stammering continuously and with great anxiety and humiliation. Forced to become king when his brother abdicated the throne, George had to overcome his speaking problems to deliver speeches to the British people as Britain entered World War II and to help keep up their morale throughout the war.

His speech therapist, Lionel Logue, was always with him when he spoke to provide emotional support. He never left the room. So, looking at the situation skeptically, should we say that the king lacked the ability to deliver speeches and was Lionel Logue’s puppet? If judged by the same standard as people with autism who type, perhaps we can determine that he was not capable.

Let’s keep an open mind.

Autism, Anxiety, and the Dentist

I have never tolerated a dental cleaning in my entire life. That is why a simple teeth cleaning required a general anesthesia. In my case, the anxiety builds immediately when I enter a dental office. I never could sit in the dental chair and lie back. The poor dentist had to examine me while I was standing, and I would be in flight mode. So this meant I had my dental appointments rarely.

Yesterday I tried again to have my teeth cleaned in a regular appointment. This time I got a dose of lorazepam an hour before the appointment. It took the worst of my anxiety away. I was able to be a patient and follow instructions and even sit in the chair and get my teeth cleaned with the light in my face. The dentist was kind and patient. She found some cavities we need to fill.

I couldn’t handle the x-ray, unfortunately, but I need them because of my cavities. I may need a general anesthesia after all to do the cavity filling and x-rays. Once I’ll be able to handle biting down on the plastic with the film in my mouth I’ll be home free. For me this was a big accomplishment. I am so happy I tolerated it.

Electricity in Autismland

I noticed that I get really nervous before I give a speech. I suppose that’s normal but the truth is I felt so scared it kind of took over. I found old stims that were gone for years reappeared. My mom kept bringing this to my attention and kept saying, “Don’t bring back something you overcame just because you’re nervous.”

She is right. It is so easy to slip into bad habits. I bothered my mom and dad with remote, non-engaged laughter. They had to struggle to get me to focus. It was like a motor car rolling downhill with broken brakes. It was not pleasant for me either.

Autismland offers an escape from my stress, but it creates stress for everyone else. I’m overly stimmy if I’m nervous like over-charged electrical energy. How to deal with this is my life’s struggle. I did get it together for my big speech. I was calm the whole time, but leading up to it I was an electrical current that was out of whack. Really I feel much better now. It is very tiring to be stuck on a current of energy. I exercised and we walked. That helped, but it is like this: I will need help either from neuroscientists or electricians. Ha ha.

My Friend in Middle School

I was thinking about my friend who is autistic and starting middle school. He is a smart guy but he isn’t educated in a scholastic sense because he was kept for years in an autism classroom. Now in middle school he is starting to go to a regular class for one period. He is overwhelmed and scared and being watched. It is hard to be scared and overwhelmed and scrutinized. In his case he suffers more because he can’t communicate with his one-on-one. It’s a struggle to do the work if you can’t communicate and you’ve never sat through a regular class before.

But in spite of this, he is smart and he deserves a chance to learn. He isn’t learning anything in his autism class. I mean, if you couldn’t talk and I stuck you in a pre-school class year after year, how would you like it? It’s not a matter of he needs to be normal before he can start to be taught, because he will wait forever. He needs to learn how to learn. No one showed him this lecture format before. Imagine moving from toddler class to middle school with no preparation. Then the school is inferring that he really isn’t ready.

It was my experience too, and to some extent, it still is. I am over the days of proving I am smart, but not over the days of scrutiny. To be autistic means you have to prove yourself over and over. I sometimes imagine how my scrutinizers would like me scrutinizing them. I think we who work to emerge from autism need to get a little more empathy and a lot less judgments. The disabled can do a lot but we fight not only our disability, we fight prejudice, of sorts. I accept it. I’m used to it, but it’s new for this boy. I wish him and his wonderful mom strength and perseverance.

Autism in Disneyland

The whole world goes to Disneyland. It is an imaginative talent, to be sure. It is sort of like travel into space, or time, or into a cartoon, in between the crowds and the long lines. The last time I was there I was so sensory overwhelmed I had a feeling of real fear. I saw dark tunnels in the lines, darkness in the rides with sudden bright colors bursting out. In the really kiddy-oriented ride, Winnie-the-Pooh, I was so bombarded by bright colors in the darkness, I almost panicked. I had to control myself from fleeing.

The Pirates of the Caribbean is so dimly lit I couldn’t bring myself to even get into the boat. I know the people I was with were disappointed, but I couldn’t do it then. I wish I could because I rode it when I was little and it is a cool experience of animation in moving figures.

My favorite ride is the Jungle Cruise. It is mellow in a visual sense because it is naturalistic. I enjoy pretending I’m on a safari.

I also love the Autopia because I can pretend I’m driving even though it is easily the loudest environment imaginable. I need my headphones all day in Disneyland.
I like Tom Sawyer Island too. It is fun but my sensory system is always stopping me from doing things. I can run on the paths, bridges, and so on, but I balk at entering the caves. My mind knows they are safe. My system says, “No, no, no.”

Somehow I did the Indiana Jones ride. I can’t believe I did, in retrospect. It is dark, scary and fast- all things my system hates, but it was really exciting and I was entertained by it. It was not in bright colors so my visual field could cope. I would do it again, believe it or not.

The roller coasters scare me so much. I have the fear of flying out so I can’t ride the Matterhorn or Big Thunder Railroad. I know I won’t fly out, but I feel almost panicky even thinking about these rides.

It’s a Small World is a really terrible ordeal. The colors, lights and incessant song drive me bonkers.

The Haunted Mansion is creepy. I can do it though. It is not dark in the beginning so I can go in. Once it’s underway I am fine and it is super creative and well done.

I think I shouldn’t go to Amusement Parks because money is wasted on me. I want to do rides I can’t get myself on. I hate crowds of people and noise. I think I need the beach or trails to relax. My sister is a huge fan of Disneyland and went this week. I remember my last trip there vividly. It was so hot, crowded and noisy. I tried to cope but I struggled to enjoy myself. The conclusion I had is I can’t go if it is crowded or hot.

I know some autistic kids who love the sensory high of Disneyland. They go on roller-coasters over and over. They have sort of a drug-experience on some of the rides. In my case it is not a stream of sensory pleasure, it is an assault on my overly sensitive system. It is an amazingly creative place, but on a scale of one to ten it is an eleven in terms of sensory challenges. To give you a hint of my experience, imagine all the rides at deafening volume, the colors at dizzying intensity, the dark shadows ominously terrifying, the heat oppressively scorching, and the sea of humanity incessant. Well, that was my last trip there two years ago. Disneyland is a test of autism endurance, but it is a cool place in any event.

The Importance of Calm Assistance

I can imagine I wasn’t the only freshman who was nervous starting high school. I could see they were also scared. I saw they were lost trying to find their way around, and lots of them were shorter than the older kids. Just like them I was nervous and had a hard time in school. I hope I am not sounding whiny when I say I can’t cover up my feelings in the same way most people do.

This week I watched the blind athlete, Erik Weihenmayer, compete on the adventure race TV program, Expedition Impossible. I wrote how his race was harder because he did it blind. His teammate, Ike, had a serious injury. His race was harder too. They came in second in spite of it. I never saw them stop in self pity or expect the race to be made easier for them. The victory was that they did so well. I would love to meet them. I think it is a triumph because Erik is showing people that being disabled doesn’t mean not living fully.

He is a lucky man because he met Jeff. Jeff is his climbing partner; his eyes in a way. I would love to have a guide like Jeff to help me in my challenges too. He is optimistic and positive and calm so everyone else stays optimistic, positive and calm- and motivated. I have had the pleasure of some terrific support in school. The reason I can accomplish the goals I have set is thanks to people like Cathy, Katie, and others. I see how their relaxed demeanor helps me. It’s important because I am nervous in school.

This year I had a nervous aide for five miserable days. She was not a relaxed woman at all. I saw how everything got her tense. I saw how small things became big things because she over-reacted to them. I saw how she made my mom worried and me panicky.

I think Erik needs calm, thinking Jeff to achieve his great accomplishments, like climbing Mt. Everest. Someone who leads with tension really hurts morale. I see it blocks thought too. It becomes about how they feel, not about working things through. I am sensitive to people’s state of mind. I think nervous energy is transferred one to the other. In autism we are all easily flustered, so a person working with autistic people needs to be a calm type.

Besides being a calm type, Jeff was also a leader because he got his team to work hard. No Limits was a sort of ambitious group. No one wanted to let his teammates down. So, I meander in my flow of thoughts and I reach this conclusion: Ike and Jeff respected and believed in Erik. They believed he could do it even though he was blind. They went on the adventure for joy, and the experience, not just to win. By their support of Erik, he was able to achieve amazing things. It didn’t seem to be a bother to Jeff. He did it in stride. He would advise, “Duck here”, “Rock on the right”, and so on. So Erik was calm and secure to the extent he could be.

As I said earlier, in high school all freshmen are anxious. The school is so big and intimidating. In autism we all have anxiety issues when it’s good, so when we are scared it is so much worse. If we are also being monitored by people with notepads, it is even more anxiety provoking. And if our support is not a relaxed person, guess what happens?

Helen Keller had a calm Annie Sullivan to support her endeavors. The people who assist the disabled must be a special type of person. I have mostly been lucky. I am eager to begin the next phase of my high school experience with a friend at my side helping me. Life’s journey is always filled with new lessons.

Adjusting to High School

I wrote a long blog essay yesterday, but I didn’t post it in the end. I guess it isn’t good to put all thoughts on the internet. It is a very public land on the internet. You can’t expect privacy, but it is a weird forum. I know my most internal thoughts will be read by strangers in places I have never been to. It is odd because you know me in a way, but I get few comments on the blog- I think it requires an account or something- so I get more comments on facebook. The feedback motivates me to keep trying because I hear from parents that I help them try with their autistic kids or that I give them hope.

I feel like I have to calm down inside. For many reasons adjusting to high school has been rough. It has been a huge change, and my first aide was not a good match for me. That didn’t help either, but it will be better next week. I like most of the teachers very much. I’m sure I will learn a lot. I love my English class. It is great. I enjoy Music History too. It is a hard adjustment but a wonderful opportunity.

I am sorry to say I lost it in school. It was so much pressure. I’m sorry I got so flustered. I see hope now. I believe now I’m on the road to being myself in school. I hope I can show my true potential. I’m trying hard.

No Limits

So, school has started. It is feeling a tad overwhelming. I try so hard to not lose my composure. It is a struggle all day. It’s interesting how it affects me. I have an overload of heat, crowded halls, and sitting still. I get so edgy in an instant. I try to control myself. It is a huge effort but I must do it if I want to achieve my dreams. Still, the struggle is hard. But isn’t life a struggle with some benefits of reprieve in between the challenges? It isn’t the other way around. We kid ourselves in imagining it is.

I watch a show called Expedition Impossible. It is a race competition in Morocco with teams of three trying to be the last team standing. One team gets eliminated each week. I see how hard they push themselves in high altitude, or in deserts, or in all kinds of different terrain. They have to mountain climb, repel cliffs, kayak rapids, ride camels, row and sail rafts, do puzzles, and overcome illness and fatigue. It is interesting in a way to see all the types of people in the race. Some are supportive and some are obnoxious, and some are weeping in overwhelmed self pity even though they chose the challenge. It is like me in high school. I chose it, so I must be the not-obnoxious or weepy one.

There is a team I will tell you about. It is a wonderful group of three athletes. One is blind. One is a US soldier who injured his leg severely on the trek. One is the eyes of the blind contestant. In a way he is the spirit of the group. He is so positive and they are all amazingly positive and determined and tough. The blind man, Erik Wiehenmayer, is incredible. He repels cliffs without sight, climbs rocky mountains, kayaks rapids, crosses a river on a zipline- all by verbal tips, and courage. He won’t let his disability stop him though his trek is harder than all the others. They all struggle too. He does it with no sight.

I see his decision to fight against limits. He won’t surrender to the easy way out. It is a good reminder to me too. I have a choice to be lazy or weak, but I will do the struggle. I too want a life not limited by my disability, so I guess I need to remember when I get overwhelmed or school is hard that my goal is my liberation from stagnation and more. I want to succeed as Erik shows me, in spite of autism and in spite of challenges.

Nervous About Starting High School

In a few weeks I will graduate middle school and next year I will start a new school. It’s a big deal in my life.  My middle school was the first real opportunity I had to learn in school. I know 6th grade was like an experiment. They watched to see how I could cope in middle school. I went in to math and science only, and did regular work in the other subjects though I wasn’t mainstreamed in them then.  It was a very big adjustment to sit so long in self-control and quiet. The schoolwork was simple compared to sitting in a classroom all day. I was determined to get a decent education, so I tried. It was not always easy for me or my aide, but I got more capable each year. This year I am doing better.  I am mainstreamed practically from eight to three. I go to P.E. with autistic kids, but otherwise I am staying in a regular class all day. My school is big. I switch rooms.
Next year my high school will be bigger still. It has thousands of students, so many clubs I couldn’t believe it, and a track and football field. It is a real big school experience. It’s scary for new freshmen, I know. I’m really nervous. I worry that my sensory system will be overloaded. I worry that students will be mean to me. Then I tell myself, “OK, it’s just worries and I am going to be fine.” I will be with some kids I know. I can walk in the halls five minutes early to avoid the mob- but I can’t stop my worries.
My aide is the best. It’s wonderful to work with her. She is kind, smart, and good at working with me. I don’t know her plans next year. I hope she can stay to start me off, or even longer. Now I worry that getting a new aide and a new school will be too much. Some days I get overwhelmed by worry. I wish I didn’t, but I do.
I worry about the teachers. Will they accept me or think I am an odd nuisance to them? I worry about the students. Now I am in class with kids who are used to me. Next year there will be new kids. I always visit school before the year starts to meet all the teachers and tour the campus. That helps a lot. I also wrote a short speech that is read to the class on the first day of school to explain my behavior and communication style to the class. That helps put them at ease, but I am still so nervous inside.
I realize I am lucky. It’s a great high school. It’s a dream of mine to graduate and go to college. I will need to overcome my fears about high school. It’s a big shift in my life. It’s the third big change I’ve had in school. I went from remedial class in elementary school to a “high functioning” autism class in 5th grade. Then in 6th grade I went to my middle school. This time I really don’t need to prove I’m smart to a school of skeptics. I think I’ve done that, so that is one big relief to me. It’s wonderful that they believe in the need to educate me, so I no longer need to worry about that.
I feel next year could be good. Unfortunately it’s unknown, so I worry too much. I feel relieved to write this. If you have tips, once again, to help me relax about this- I’ll take them.

The King’s Speech

I watched the movie, The King’s Speech this weekend. I could so relate to his internal anxiety. Obviously my speech is much worse than a stammer. If I stammered I’d be happy compared to what I do now, but that’s a relative issue. I could relate to his fear of speaking in public, though, and I had other similarities. OK, I’m not a British king, but other than that, let’s see. First, he had a series of experts that couldn’t help. In the end, the person who helped him was insightful and not a trained speech therapist. This is what happened to me. I saw a lot of so-called wonderful experts who helped very little. Then I saw Soma who was not an autism specialist. I think she is an engineer or something like that, but she is insightful. I began to have real communication at last.
I saw that Bertie, the king, could only talk well with trusted people. So true. I hate using my letter board or computer if I do not fully trust someone. Trust is like an essential tool to fight anxiety in communication. Stammering is an anxiety issue, but the king trusted Logue, the speech teacher, so he could trust himself. I saw him freeze with his brother and dad. They angered me because they humiliated him and treated him badly because he stammered. Somehow Logue realized Bertie needed to be heard and was blocked by nervousness. What unlocked normal communication was realizing someone listened.
You know, I remember the first time I saw Soma. She saw through the resistance and taught to my mind. It gave me a new perspective on life.
The movie was interesting. I’d recommend it.