Category Archives: assistive technology

Communication Rights Toolkit Launched

Like many of you, I have been home on quarantine. I am fortunate to have good weather and lots of opportunity to walk outside. I realize these isolating circumstances have been tough for many who haven’t lived a lifetime not talking. Lots of people are connecting via the internet. It’s pretty remarkable to see my dad chatting with relatives in multiple countries in international conversations and every one of them is stuck in their home.
These are strange days but my hope is we will be nearing the end soon, life will return to normal soon and that we will be healthy and better prepared internationally should another pandemic emerge.
As many of you know, I am involved with Communication First as a member of the board of directors and they have developed a toolkit for people with communication disabilities in response to the current situation. This is important to provide people who rely on alternative modes of communication to have the same rights of informed consent as any other patient.
Please share these links with those it may benefit, and please stay healthy.

Silent Advocates

I am happy to let you know about two new books that rely on the writings of autistic typers to understand autism. Professor Edlyn Pena of Cal Lutheran University has edited two compilations of essays, one more scholarly and in-depth, the other using more contributors, but briefer. I have contributed my two cents to both books.
Last weekend people came to Cal Lutheran University for a conference celebrating the books’ publications and met with eight of the ten contributors to Communication Alternatives. It was a happy day seeing the changes in attitude and recognition since I started on my typing journey.
I hope this film from the conference will move you. Our messages are honest and truthful. They are also messages from autistic people themselves.

I hate to be a pain, but I felt I must juxtapose the last film with this one. This is what we are up against. Who do you trust to understand autism better?

No more talking about us without us.

The Anniversary of “In Two Worlds”

It is the anniversary of the publication of my greatest achievement, my novel, In Two Worlds. Why do I say my greatest achievement? After all, my first book, Ido in Autismland, is better known. The answer covers many things.

I know many typers with autism who have written books. They are all nonfiction memoirs or essays, as is Ido in Autismland. To my knowledge, In Two Worlds is the first, and only, novel of fiction, narrative and dialogue ever written by a nonspeaking autistic person about the autistic experience.

It is for this reason that I brag a bit. I understand autism. I understand my inner world and I understand the inner experience of In Two Worlds’ wonderful hero, Anthony. You, the reader, experience autism through his eyes. You experience the visual sensory kaleidoscope that overwhelms him time and again. You experience his anguish at being motor trapped in his body unable to show anyone he understands.

That is, anyone except you, the reader, because you hear his thoughts. Only Anthony and the reader are privy to his mind. Everyone else in his life misses his interior because his exterior is so compromised.

In Two Worlds, a BookLife Prize quarterfinalist in fiction, has been compared by readers to important past works of fiction that shed light on other mistreated or misunderstood peoples, and whose plight once depicted in these novels inspired societal change for the better.

And who is more misunderstood by others than a person who can’t speak or communicate thoughts? Who is more misunderstood than a person who cannot show he is intelligent and is physically controlled by motor compulsions that appear nonsensical?

The first part of the novel is devoted to Anthony’s life before he can communicate. He is frustrated, lonely, and underestimated by everybody, family and professionals, and bored of baby talk and baby lessons. He lives his life waiting, hoping, stimming, and finally he gives up because year after year nothing changes for him. Until one day he finally meets his liberator, Marina, who teaches him at 16 how to type to communicate and from this his entire life changes.

The world of autism, as anyone familiar with my blog knows, is filled with powerful opinionated educators, specialists and dolts. They do not take challenges to their theories lightly. Anthony is liberated by being able to communicate, but many new struggles are just beginning for him as he now must fight for his right to an education and to be recognized as a sentient being. It is not an easy journey.

I invite you to read In Two Worlds if you haven’t already. I invite you to review In Two Worlds and would be grateful if you did. It is a book for everyone. Not just for those of us inundated by Autismland. I did not write the book for us. I wrote it for the world to understand us. I wrote it for book clubs, libraries, and teenagers, to give to friends, to open eyes, to open minds, and to open hearts.

Breaking Barriers at UCB

This moving radio story is one too familiar to me. Hari Srinivasan is a kind of fellow traveller in two worlds. I congratulate him for his huge accomplishments. I have known the reporter Lee Romney my entire life and I guess you can tell she gets it. She actually edited both my books so by now she understands the challenges of nonspeaking autistic people remarkably well and it shows. The difference between Hari’s current life and his former training in ABA is stark. It is incredible how offensive I found it listening to the jolly infantile voices its practitioners used in the brief segment that described ABA in the program. Ugh. But it is important to show that popular treatment that so misses the mark in order to compare it to the great success of Hari once he found another way.

Please be sure to listen and not just read!

Typing on my iPad

Here I am on my iPad.  I am still getting used to it.  It is still slow compared tomy letterboard, but it is getting better.  I talk about Shakespeare for homework in one clip, and I just chat in the next.

iPad Update

I will post films of me using my iPad soon. It is starting to feel natural to use it, but I hate when the camera is on. At first I get so nervous I make simple mistakes, but thankfully I relax eventually. I love the game Temple Run on the iPad. I am addicted to it. Ha ha. I remember I used to hate games but I love this. Well, this is a lot better than forced drills of playing Candyland. Man, was that insipid. I love improving my scores and getting better. The technology is so awesome today and it helps me in life.

Non-Verbal Autism and Assistive Communication Devices

The world of non-verbal autism is changing thanks to assistive technology. When I was small, the best I got as a communication tool was PECS pictograms. For those not familiar with PECS, it is a system of basic needs communication and it looks like this.

In recent years, new devices have flourished. I started communicating on a letter board, a low tech way to point to letters. I still use this method often because it is fast, portable, and if I mess up a board there is no loss of expensive equipment. Here are some types of letter boards.

And mine has a math side too.

Now I have been using a dynawrite also with word prediction and voice output.

Some kids use a fusion,

or an iPad. Recently many non-verbal kids I know switched to iPads and like it. It shows their work in stored memory which is good for school.

The thing is, any method involving letters needs to be taught because autism limits the motor planning to do typing or pointing clearly. None of us learned this skill in school. We all went to someone who had to patiently teach us how to express our thoughts in this modality. Then our moms worked really hard with us at home. The journey to communication is long and hard and starts with the opening of a door.