Category Archives: hope

The Autstronaut

The-Martian-4

 

 

 

 

I watched the movie, The Martian, last weekend. I found it challenging to sit through initially. I felt the astronaut’s isolation from people so deeply. People may watch this movie for its adventure and ultimate triumph over adversity. This is true. The hero doggedly persevered, problem solving and focusing on challenges rather than on his feelings. It is pretty much the only way to overcome insurmountable obstacles.

For those who haven’t seen the film, it tells the tale of an astronaut left behind by his crew, alone on Mars. Due to a sudden storm they had to preempt their expedition and they erroneously believed he had died. His job was to survive until he could be rescued, which meant getting enough food and water to live, and staying sane.

My perception of his experience is skewed because of my own isolation due to autism. With autism I may as well be on Mars sometimes because the inability to talk is isolating. It creates a barrier from other people because I may think ideas but I can’t speak them. Yes, I type, but it’s slow compared to speech or I may not have access to typing the instant I want. So, I feel like I’m on Mars–not the way Temple Grandin described in Oliver Sacks’ book, An Anthropologist on Mars, in which she said she couldn’t understand human behavior. That is her point of view from her Asperger’s brain.

My Mars is like the astronaut’s. I understand people, but I’m going to have to get nearer to them. In his case he had to make water, grow food and find equipment to travel, all while combating loneliness and discouragement. He had hope and he had trust in himself. This is essential. My Mars is similar in that I must battle against giving up or even feeling sorry for myself because these are the emotions that hurt progress most. In so many ways autism is like being stranded on another planet alone, but it is possible to problem solve to get closer to “earth.” The problem with autism is the initiation deficit. Unlike the astronaut in the film, we cannot move on our own ideas consistently or independently. But, like him we can set many small goals and doggedly work on overcoming our obstacles.

It is obvious to me that being able to control our response to feelings is enormously important. It is necessary to not rage against or fight the forces that are beyond our control. The astronaut probably would not have survived if he had raged against his crewmates or despaired his unique isolation, but he instead focused on doing and solving. Doing and solving in autism involves gaining control over motor movements and impulses as well as control over intense emotion. Each problem can be worked incrementally. It may be slow going but in time the “aut-stronaut” may be able to come home.

 

 

 

False (Deprivation of) Hope

By guest blogger, Tracy Kedar

 A few weeks ago my friend’s elderly father was hospitalized. At the time he was confused, agitated and had worrisome physical symptoms. A doctor told my friend that she should place her father in a hospice, that his death was imminent. “What?” she responded, “He was driving just last week!” “Well,” said the doctor abruptly, “he isn’t now.”

Today he is back home, back on his feet, and more active than he has been in months following the correct treatment of his symptoms by a different doctor. “What that doctor did was rob me of my hope for my father. I was crushed by his verdict and he turned out to be completely wrong,” she told me.

How can we fight when we are told something is hopeless? When there is no point in hoping we must be resigned and accept. When Ido was around six a doctor we saw who specialized in autism said that over the next few years it would become obvious whether Ido would be able to improve or would spend his life as a “low functioning” autistic person. This was prior to him having any communication and his true potential was totally unknown to us. She was preparing us to accept the low remedial, low expectations prognosis she saw as inevitable at that point.

 I was thinking about these stories, and so many others, of professionals advising people to abandon what they saw as false hope, and then having their dire predictions turn out to be wrong. These professionals advised false deprivation of hope, in my opinion.

 I have heard a few people suggest that Ido’s book may cause disappointment to parents whose children with autism may not learn to type as he does. Perhaps they believe that people with autism who have the potential to learn how to communicate their ideas are such rare exceptions that it is better if they keep silent and not give parents a chance to dream that their child too might have that capacity. Better to have low expectations, this reasoning goes, than to strive for more and have hopes dashed. Keep expectations low like this and you guarantee disappointment.

 Every autistic person I know who now can express his or her ideas through typing was once thought to be receptive language impaired and low functioning intellectually. No teacher would have looked at them as children and said, “That one will be a fluent eloquent communicator.” That is because their outside appearance belied their inner capacity. Every parent of these children gambled and decided to pursue letterboard and typing without any guarantee of success.

 Since Ido began typing a number of children we know personally also began to get instruction in use of letterboard and typing on an iPad or other assistive technology, either by Soma Mukhopadhyay at halo.org or in another method. And every single one of them has proven themselves able to communicate. Some are more proficient than others, but none had zero capacity. (This is different than rote drills of typing and copying done in many schools. This is specialized training in typing as a form of communication).

 How would it have been compassionate to these children and their parents to lower their hope to the point that they would not even try these methods? Shakespeare said. “Better to have loved and lost than never to have loved at all.” In this case I would change it to, “Better to have tried and not succeeded than never to have tried at all,” because success may very well be the result.

 Ido describes his experience of autism as being trapped in his own body, with a mind that understands and a body that doesn’t obey. Every nonverbal autistic communicator that we know of has expressed the same thing. How many more are waiting to find a way to express their thoughts and receive an education? Diminished expectations helps no one. I do not believe hope in this case is false, but rather, the denial of hope through misunderstanding and low expectations is what is false.