Monthly Archives: January 2015

Planting Seeds

I receive many letters from people who are not parents of kids with autism but they are relatives or friends of someone who has autism. They have read my book and see the child has the potential to understand, but they cannot influence the parents to change the way they interact with the child or  teach communication. It is painful to read these letters because I know the kid is trying, they are trying, and the parents aren’t ready to hear the message. So they ask me how can they change things.

I wish I knew. The parents or teachers must be open to new ideas. If they’re not, what can one do who has no guardianship? You can treat the child differently yourself, talk to him normally, perhaps even see if the parents will let you introduce a letter board just for practice, but beyond the steps people have told me, it cannot be forced.

I guess one argument to the parents could be, what do you have to lose by trying? Like I’ve written in the past, how is it harmful to read someone an age appropriate book or speak in normal speech tones? This is modeling for people who have never seen their child treated like that.

I know several parents personally who were not open to teaching their kids how to type in the past because they couldn’t see their potential, but after many other kids they knew began typing they started to become more open. They had lots of conversations with other parents and gradually it helped them.

I don’t blame them. They have had lots of professional opinion to overcome as well as confused and conflicted emotions. I guess it’s not always immediate, but you are planting seeds. Hopefully one day they will germinate.

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.

Having More Say in Our Lives

My hope is that one day autistic people will be taught to communicate as young as possible. It certainly would be interesting to see how life would be if instead of drills and remedial lessons kids got lessons in age appropriate lessons, typing for communication and exercise specifically to awaken the mind/body connection. In my opinion, it is likely that the severe autism symptoms might be lessened because the urge to escape a frustrating reality will be less intense. One day I hope to put my ideas into a program for other people with autism. It will be the world’s first program for people with autism run by a person with autism.

Isn’t that pathetic?

How many autism organizations have people with autism consulting them or on their boards? If inclusion and diversity are important, why do so many autism experts fail to consult people who have autism? If I had an organization for blind people, I think consulting with people who are blind would be valuable. If I had an organization for people in wheelchairs, I think understanding their experiences would make treatment better suited to real needs. Must those of us with neurological issues be isolated from our own treatment options? My hope is to change this discriminatory practice.