Category Archives: emotions

Going Back to School

I am mentally trying to prepare myself to return to school in two weeks. We start so early it is still blazing hot summer. The summer break helps so much to prevent burnout, but now I will need to remind myself how to sit in classes all day and to not take breaks whenever I want. It will be like riding a bicycle, I hope.

Missing My Grandmother

I miss my Oma. I think about how many lives she touched. She was like a good-natured, kind-hearted soul. Many times I observed her having the bravery to face hard circumstances after injuries or operations. It impressed me how hard she fought to recover and how positive she acted throughout her struggles. That isn’t easy. No one is perfect. I don’t mean to imply that she had no flaws, but she was, in my opinion, tremendously courageous. She understood what was important; family, good food, a nice view, friends. She loved babies and dogs and they loved her too. My german shepherd is shy and takes her time trusting people, but she always loved my grandmother and stayed faithfully by her side whenever she visited.
My grandmother is in a peaceful place now. I hope she will never again have fear, pain, or war. She has borne more than her share of all three, but she had the grace to smile and love despite the challenges. I have learned much from her example.

Dealing with Sorrow

My Oma is very ill now. It is like a waiting game. Cancer is terrible. It destroys people bit by bit. I try to live in a normal way, and at times I forget in the moment about the situation and I’m OK. Then I remember the situation and I immediately become tense and irritable. I think my grandmother is blessed because illness is not the core of her life. It is halting it, but it hasn’t defined her. She is blessed because she is loved and people visit her and comfort her. It is nice to see the relatives treat her with such love. This means she has earned her love, I’m sure, because it is heartfelt, not obligatory. But still I know the time is drawing nearer when we will need to say good-bye. I try to prepare myself because I know I can’t lose control of myself and in autism our emotions take over. It is a big challenge to me to grieve in a normal way and not ride the roller-coaster too fast on an emotional slope downhill. My Oma loved me as I am, and though I know she wished I hadn’t been born with autism, she loved the boy inside and was not stuck on my flapping and my stims. My grandmother is lovely and has shown me how to deal with hardship gracefully. I will miss her lots.

My Book

When I was twelve I did a thing very important to me. I began writing about autism. Nearly every day when I came home from school I wrote. It was like a fire in me. I felt so lost in a way because I lived a life of isolation since I was so limited in my ability to make friends. I felt really misunderstood in my dealings with professionals, and I was the only severely autistic kid in my general education classes. I wrote to help me deal with a miserably hard disability. I wrote to educate about incorrect but widely believed ideas about autism. I wrote about my weird early years in an intense home program that really missed the boat and left me terribly frustrated. I wrote about my journey to communication from total silence, and I wrote to help me accept myself. I wrote on and off for three years. My mom felt my book was really important because it exposed the inner truth about autism. It took my dad longer to adjust to the idea of me being published because I would be scrutinized by everybody and he was wary of biased reactions- something I had encountered so much in my life. After lots of delays, we will finally have a book later this spring and I won’t be alone in my message. I think at least three other books by non-verbal autistic people will be published too. It is a new trend. I am happy I will be part of it. I will keep you posted when I have more news.

Happy and Sad

It is a happy and sad time for me. My new high school is a nice, very caring place. My teachers are better than my old school. My classes are smaller, and it is more easy-going in general, so this part of my life is much, much happier than last semester. I am sad because my grandmother is not well. I don’t visit her now because she is too frail and I don’t control my movements well. I know she is leaving me in the near future, though we never know when, but my heart weeps inside. She is such a lovely soul and she hurts now too much. It is an amazing journey to live a life, and hers makes the world a kinder place. It is life, I guess. Joy and sorrow are always in the wings waiting for us. Sometimes one. Sometimes the other. Sometimes both at once.

Thickening My Skin

I have to aim high in life. I am the same person inside I would be if I didn’t have autism. If I didn’t have autism I’d be interested in a career, an independent life, and friends. I still have these goals. School is now feeling somewhat goal oriented. What I mean is, high school is necessary to do what I want in life. My goal is to get a college education and to work after that in education and autism, so high school is a step toward all that.

My high school is forcing me to toughen up. In the beginning I was miserable because I suspected I was not welcome. I have come to the conclusion that I really don’t need to be welcome in order to succeed. Why should I worry if everyone likes me in the school or not? The truth is, I am a really visible presence because I am so different. I am somehow learning not to be a sensitive guy about this. If I am to face the whole world of special educators I better get a thick skin.

I wrote recently about how irritated I was by a woman who was shocked I understood English fluently even after I presented to an audience. To her credit she grew and learned from our interaction. That was wonderful and I give her credit for opening her mind. I was interviewed recently by medical students who were surprised to find a bright mind behind my symptoms. They were kind and open-minded and the professor told me they learned to not judge a book by its cover. Since my cover is Autismland I know some people can’t see what is inside, but that is not my limitation. It’s theirs.

The reality is that differences scare people. It isn’t just autism. It can be physical, or cultural, or whatever. In any case, the odd man out is either welcomed by people or treated in a cold and rejecting manner. I have to realize it is individuals who are reacting to me in the best way they understand. When people have pre-judgments I must grow in my maturity. The saying is, “from adversity we get strength”, so I will try to do that.

My Speech at the Vista del Mar Autism Conference

I am honored to speak here today. I know some of you are professionals working in autism, and some of you are parents, and even a few of us here actually have autism. So I will represent the point-of-view of someone who has unfortunately lived with autism since the first moment of life.

It aint easy.

It’s hard on parents and I see the sadness and struggle of them all the time. It’s a true challenge to have a child who can’t do normal tasks, does odd self-stimulatory behavior in all the worst moments, can’t communicate in words, signs, or even gesture their deeper thoughts, and needs constant supervision. So I have empathy for what parents go through. The worst for parents is never knowing if your non-verbal child is understanding and thinking at a normal level. It leaves parents talking simply- as they have been advised- to help their child with basic concepts. The child is never fully communicating in sign, or Pecs, or even speech, so it is a really hard situation for families.

The autistic person has a different challenge. Recently the news was about an Israeli soldier held prisoner in a dungeon in Gaza for nearly six long years with no communication with the outside world at all. I thought about how awful it would be to be a captive cut off from life and sun and kindness with no certainty of surviving or being freed.

Now, autism isn’t a matter of life or death, but it is a prison that won’t let us talk to the outside world and we have no certainty of ever being freed. I brought up the analogy because I think people can imagine more easily being a captive of cruel terrorists than of being a captive of your own body. So, you need to try to imagine my situation as a young non-verbal boy with no way to express my ideas and see that it was like a nightmare. Not only was my mind fully present and understanding everything, but I read fluently. I thought of retorts, jokes and comments all day long in my head. Only no one else knew.

So, I was talked to like a toddler, not given a real education, and kept bored and sad. This changed when I was finally taught how to get my thoughts out. The liberation was as remarkable as the freeing of this poor captive.

It’s true that I stay tied to autism still. It is with me every moment of my life. It is not a liberation from autism to be able to communicate or get an education. However, it is a liberation from its isolation. My typing and my pointing to letters have enabled me to be a free soul.

I go to a regular high school all day. I go to regular classes too and I do regular homework, and so on. I may challenge the teachers because I behave oddly at times, though I am actually working super hard, but I learn, get good grades, and intend to graduate, go to college, and live a kind of, sort of, normal life. Kind of, sort of, because autism is a barrier to normal anything.

Being autistic is a major challenge. It is the biggest hurdle because it is pervasive, very misunderstood, and incorrectly worked with in too many cases.

When I was twelve I started writing about living with autism. Soon I hope my essays will be available to you in a book that will explain a lot of the behaviors and inner experiences of the person with autism who can’t communicate.

If you check out my blog, www.idoinautismland.com, or follow me on twitter or facebook, you will be alerted to when it is ready to purchase. My goal is to help you parents connect to your children in real communication, and to help professionals understand the real experiences of your clients, and to burst open the prison door of my fellow travelers in Autismland.

Thank you for your time today.

Envy Sucks

“If I didn’t have autism…”is a phrase I realize is filled with turmoil. If ever I imagine my life as I wish it was I get so blue, so it’s better to focus on what is, not what it isn’t. I have moments when I envy my sister or cousins or friends. I wish I could socialize with ease like they do. I wish I could be trusted alone. I wish I could learn to do things I can’t, like sports or singing. I hope I don’t sound whiny, but I see what I wish all day and it hurts sometimes. Still, I will keep persevering because I am determined to not waste my life in negative envy. Autism is a challenge I will deal with.

Oscar Pistorius is a hero of mine. He runs at world class speed and he is trying to get into the 2012 Olympics, but the Olympic Committee is trying to keep him out because they say he has an advantage. The advantage is that he has no legs. Ha ha- what an advantage. They claim his prosthetics cheat, so he is struggling against a disability and stupidity, as we disabled people do daily. Still, he is a fighter and I admire his never taking the easy way. He could have sat around moping as a legless kid. Instead he put on prosthesis and played rugby and he ran.

So I guess he had his down moments too. I keep thinking how hard the fight is. I know I have to fight, so I won’t mope. I will see my work to the end, though I realize the end is always out of reach. It’s true my illness is a trial at times. I can’t wish it away any more than Oscar Pistorius can wish his legs back. The solution is to fight envy and deal with what is, not what might have been.

Envy Sucks

“If I didn’t have autism…”is a phrase I realize is filled with turmoil. If ever I imagine my life as I wish it was I get so blue, so it’s better to focus on what is, not what it isn’t. I have moments when I envy my sister or cousins or friends. I wish I could socialize with ease like they do. I wish I could be trusted alone. I wish I could learn to do things I can’t, like sports or singing. I hope I don’t sound whiny, but I see what I wish all day and it hurts sometimes. Still, I will keep persevering because I am, determined to not waste my life in negative envy. Autism is a challenge I will deal with.

Oscar Pistorius is a hero of mine. He runs at world class speed and he is trying to get into the 2012 Olympics, but the Olympic Committee is trying to keep him out because they say he has an advantage. The advantage is that he has no legs. Ha ha- what an advantage. They claim his prosthetics cheat, so he is struggling against a disability and stupidity, as we disabled people do daily. Still, he is a fighter and I admire his never taking the easy way. He could have sat around moping as a legless kid. Instead he put on prosthesis and played rugby and he ran.

So I guess he had his down moments too. I keep thinking how hard the fight is. I know I have to fight, so I won’t mope. I will see my work to the end, though I realize the end is always out of reach. It’s true my illness is a trial at times. I can’t wish it away any more than Oscar Pistorius can wish his legs back. The solution is to fight envy and deal with what is, not what might have been.

Cherishing Our Loved Ones

I was thinking about my grandma. She is a really brave and nice woman. In the weeks since her cancer was diagnosed she has gone through hard times. She had surgery to remove a tumor that was spreading the disease, and she is not young. Recovery is hard and she is getting stronger slowly. I know she is still living with cancer that was not removed so I know she is ill still. I think we need to make time to enjoy her brave and lovely presence as much as we can. We sometimes forget in our troubles and busy days to cherish our loved ones, but when one is sick it focuses this need. I love my Oma. Each time I see her is precious.