Category Archives: autism

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!

Podcast from Down Under on Autism

From Australia, this seven part podcast and labor of love by journalist parents Travis Saunders and Fiona Churchman. It discusses autism in its many permutations and throughout the lifespan. You can find my interview in Episode Seven. I am grateful for the increasing interest in understanding nonspeaking autism and to those, like Fiona and Travis, who interview nonspeakers to get to the truth.
Enjoy

My Presentation at the UN World Autism Day on AAC and Communication Rights

Proud to have presented this video at the UN World Autism Day today.

Typers were well represented at the conference.
To view the whole conference,follow this link.

Enjoy

UN Autism Conference

UN Conference on Autism and AAC, on now. To watch live go to
https://www.facebook.com/UNWebTV/

UCC-Related Highlights:

10:10 a.m. Keynote Address
David James Savarese, documentary filmmaker, Open Society Foundations Human Rights Initiative Youth Fellow
10:25 a.m. Video excerpt from the documentary film “Deej”

10:30 a.m. Communication: A Human Right
▪ Moderator: Elaine Hall, Founder, the Miracle Project
▪ Ryan Berman, Communication Partner
▪ Dr. Julia Ejiogu, Clinical Director, The Zeebah Foundation, Abuja, Nigeria
▪ Neal Katz, self-advocate and Community Teacher, UCLA
▪ Noor Pervez, Community Engagement Coordinator, Autistic Self Advocacy Network
▪ Ernesto Reaño, Director, Psicólogo Clínico, Lingüista, Peru
▪ Video: Ido Kedar, self-advocate, university student and author
11:10 a.m. Communication: Technology and Training
▪ Moderator: Elaine Hall, Founder, the Miracle Project
▪ Darlene Hanson, Director of Communication Services, REACH
▪ Michael Huang, Founder, Uplus Academy, Nanjing, China
▪ Chloe Rothschild, self-advocate, national speaker and Member of the Board, The Arc U.S.
▪ Video: Soma Mukhopahyay, Founder, HALO Clinic
▪ Video: Tito Rajarshi Mukhopadhyay, self-advocate and author
Statement by Payam, self-advocate

Musical Neurological Mysteries

I have been listening a lot to Beethoven recently. My passion for different composers goes through phases. I have had a Bach phase, a Gershwin phase, a Prokofiev phase. I love their distinct styles and utter genius and originality. Each one was a profoundly transformative composer who also created incredibly poignant and beautiful music. Because I have synesthesia, I hear and see my music. To be honest, some music is visually beautiful and some is harsh and hideous to me. Beethoven has music that is like a visual poem. His melodies are like flowing waves of lights when they come together perfectly.

Neurologists might want to ponder the mystery of Beethoven a bit. For a huge portion of his composing career he was either losing his hearing or was totally deaf. How did his brain do the things it did missing a sense- the essential sense it required? I have been learning a bit about art history recently too. Can you imagine a genius like Van Gogh painting blind, remembering how to paint somehow? My mind cannot comprehend how Beethoven wrote his music, orchestrated it, created mood, emotion and phrasing- and all without hearing it. Even an experienced chef likes to taste their food.

The human brain is a mystery. Beethoven wrote some of the most sublime music ever written and he did it as a non-hearing person. Generally that would end a musical career, but he had inner music. He remembered sounds from when he heard. Did he hear them in his head the way we do? Who knows? But we do know he was able to tap into this ability somehow.

I tend to turn subjects back to autism. We don’t understand the brain well. By any logic, a deaf man should not be considered one of the world’s greatest composers. But he is. So once again I caution experts to have a little humility and not presume to think they have a clue about how a nonspeaking autistic person perceives and understands. The brain has so many unknowns, and people who by logic shouldn’t have an ability may have it, and sometimes at a profound level. I shouldn’t be processing human speech, according to some. I shouldn’t be writing my thoughts. I shouldn’t even have thoughts. Well, I say, go listen to Beethoven’s Ninth Symphony and imagine writing it deaf and try to be a little humble about the brain’s unknown capacities.

An Anecdotal Survey

ABA is the first treatment recommended by pediatricians when a baby is diagnosed with autism. It is often paid for by insurance, school districts and other sources.
It covers lots of hours.
It gives parents a break.
Who benefits from all this effort? And how much does it actually help?
I have observed that it is big business, to the tune of billions of dollars a year.
I have seen young practitioners open agencies of their own with only a few years of experience.
The demand is high.

So I want to do an informal, anecdotal survey. My personal experience tells me that ABA has been a source of suffering for a lot of nonspeakers- though perhaps others with different symptoms may be helped by the flashcards, the baby talk, and the “touch your nose,” BS. But for me, I get PTSD flashbacks just hearing the phrases, “High Five!” or “Good Job!” Thankfully, no one gives me a so-called neutral no anymore.

I know so many people now, and there are more all the time, who had years of DTT and ABA –to great expense and parental commitment– who once they reach the age of no return are just written off into “dummy-land.” In other words, too “low,” too “severe,” to be “cured.” Because, after all, “recovery” is the promised land and the parents of the kid that fails to recover during that “window of opportunity,” is then told that the kid just isn’t sufficiently cognitively with it. Sorry for the inconvenience. It only took a decade to figure out.

But lots of these kids type now and they have a different POV. They are highly cognitively with it. But motor “without it.”

So, I’m curious, what was your, or possibly your kid’s, experience with ABA?
How much did it help?
Did it drive you nuts, like it did me, or did you not mind it?
Please specify if the person who received the ABA is speaking or nonspeaking. I’d like to compare the difference in service satisfaction.

I’d love to hear your stories.

Interview and Book Reading on Autism Live Podcast

I am belatedly sharing an interview done with my mom and Vana Thiero on the Autism Live podcast last month regarding “In Two Worlds.” Since I was unable to be there in person, I participated virtually by pre-recording answers into my iPad. The second video has a live reading of Chapter 1, Beach Day, read by performer, Eli Bildner.
Many thanks to all involved, and especially to Vana and Eli.

A Little Taste of ‘In Two Worlds’

In_Two_Worlds_Cover

Here’s a little taste of my new book, In Two Worlds, in which you meet the protagonist, Anthony, and his family. This is Chapter 1, ‘Beach Day.’

If you enjoy this sample, please check out my book on Amazon, available in paperback and kindle, and as an ebook at Smashwords.

 

Chapter 1: Beach Day

 

Anthony enjoyed going to the ocean. He loved the cold water on his hot body. He loved the hot sand tickling his bare feet. He loved the sensory pleasures of the ocean breeze on his skin, the whitecaps breaking and the seabirds running after the waves. He enjoyed finding seaweed that washed ashore and stomping on the air bubbles. Seaweed was enticing. It twirled and trailed after Anthony in fascinating patterns. Putting it all together, the ocean was a huge rush, thrilling every sense, even taste.

“Anthony, take the seaweed out of your mouth!” his mother yelled. The three boys were playing in the sand. Mark had prepared a long path meant to funnel the tide. Little Gary played with his toys, attempting to build a tower of sand. And Anthony, who had resisted all attempts to get him to make his own tunnel or tower, was sitting nearby running sand through his fingers and loving the feel. He stared, mesmerized at the sight of the sand tumbling in falling columns to the sand on his feet. He had to taste it. The urge was overwhelming. Oh no, not again. Anthony’s father jumped up.

“No, no!” He brought a towel and wiped Anthony’s tongue. The people lying closest to Anthony’s family were staring. “Give him some water,” his dad yelled to Anthony’s mother. “I can’t get it all.” Then he stared sternly at his son. “No eat sand, Anthony,” he said in clipped broken English. “No, bad. Bad.”

Part of Anthony wanted to eat more sand just because he hated baby talk so much. Compulsions were hard to take. They were like a body ordering a mind. It wasn’t as if Anthony enjoyed a mouth full of sand. It was gritty and tasted salty and he felt a bit like gagging. He saw his brothers pretending they weren’t with him. He saw his father’s shame. If Anthony could have explained, he would have told his parents that he had to obey the compulsion. It didn’t matter that the sand was gross in his mouth or that he looked like a strange oddball to the strangers who were staring with such curiosity. His body ordered him to eat sand, so he ate sand.

His impulsive acts were like a lizard hanging out on a rock and without thought ambushing the cricket that wandered by. Like the lizard, Anthony lived with impulsive actions governed by his primitive brain, but unlike the lizard, they often were not functional. A lizard eats his cricket to survive. Anthony’s impulses, like pulling petals off flowers or eating strangers’ leftover scraps he found on the tables in the mall food court or putting sand or seaweed in his mouth, seemed idiotic, harmful, or just plain weird. But he had no means to resist these compulsions.

“It isn’t good, Anthony,” his father said. He took Anthony by the hand to play in the waves. Gary took his father’s other hand. The moist sand vanished under Anthony’s feet. Anthony bounced up and down on his toes and waved his arms in the air, excited. The three of them jumped over the approaching waves over and over. Finally, Anthony tumbled forward and brought his hand deep into the soft, muddy sand. There was no stopping himself. He put a handful of it into his mouth. “I can’t take this any longer,” Anthony’s father muttered. He brought Anthony and Gary back to the towel. “He did it again,” he told Anthony’s mother.

“I saw,” she said. “Maybe we should go home.”

“No, no, no!” cried Gary. “It’s not fair!” He was right. The family obeyed Anthony and his impulses too often. “I want to stay longer, please.”

“He has autism,” Anthony’s father yelled to the staring strangers. They turned their heads, embarrassed at being noticed. “Fine, let’s go play ball,” he called to Gary and Mark, “and maybe,” he suggested to Anthony and his mom, “you two can stay here on the towel.” Anthony’s mom gave him a snack. She poured sand on his legs and dug holes in the sand with him. He started to calm down inside. His mom sang to him and he snuggled next to her. Then she took Anthony by the hand and they went for a stroll by the shore. He felt the velvety sand under his feet squish between his toes with every step. He felt salty and damp. He was happy. When they came back to the towel, after a long walk, Gary’s tower stood, pail-shaped, made by inverting damp sand into a multi-tiered edifice.

Anthony had to obey. He stepped on it.

 

 

 

Announcing the Launch of my New Book, “In Two Worlds”

I am thrilled to announce the  launch of my new book, a novel called In Two Worlds. It is  currently available on Amazon in paperback form and will be available in Kindle and Smashwords very soon!

In Two Worlds release 071718

Proposed Position Papers by ASHA (American Speech Language and Hearing Association) Demean my Communication

The experts at ASHA, the American Speech Language and Hearing Association, have evidently become concerned that more and more autistic  people have broken through the communication barrier using methods other than theirs. Their response has been to put together a position paper condemning these other methods. It’s a bit ironic. In my own case, speech therapy didn’t accomplish much despite years  of expert instruction. Too often, the failed autistic speaker is blamed for the failure to speak because he is labeled as being too low functioning, too lazy, or too dumb to advance. And the speech therapist is off the hook for failing to made headway in communication with the non-speaking student since he’s written off as being low functioning, lazy, or dumb. It’s a great system, to be sure.

So certain methods that try to teach another way to communication are derided as a hoax. Hoaxes  certainly exist in autistic treatments. One must be vigilant because unknown neurological factors are at play and people can make treatment claims based on nothing more than the hopes of parents. But hopeful parents can  also spend 10 years  (or more) on well-established methods that give little result more than a few embedded phrases and some unclearly articulated words to show for it. When the end result of ten years of speech therapy is someone who speaks like I do, then from their point-of-view,  it seems a logical extension to determine that the method that gave me the ability to express myself fluently through letters is invalid. Of course, if  I had been left with my speech alone to communicate, I’d still be locked in and completely trapped. They reject my communication because they were not successful teaching me- or others like me- to communicate expressively.

So, no thanks. I’ll take a “hoax” that worked over a treatment that failed me any day.

The ASHA position is still in draft form. You can rebut or respond until June 24. Here is a link.  And here are some sample quotes that show their line of thinking. Note that the communication of typers, (and this is regardless of the degree of autonomy), is discredited.

“For both FC and RPM, there is no credible evidence that messages are authored by the person with a disability, and there is no credible evidence indicating authentic independent communication or any other beneficial outcome arising from FC or RPM (Lang et al., 2014; Tostanoski et al., 2014; Schlosser et al., 2014).”

“(ii) In RPM, there is no empirical evidence to show that facilitated messages are authored by the individual with a disability.”

“Both FC and RPM rely on presumptions of competency (Travers & Ayres, 2015). Presumption of competency is a risk to an individual’s safety when it is given more credence in treatment decisions than known facts about the individual or evidence to the contrary.”

“In the absence of evidence that messages delivered by RPM are authored by the person with a disability, RPM poses a potential risk of harm to the person using RPM and their family members. This is because, RPM being untested, there is a risk that the messages delivered via RPM are not authored by the individual but are instead authored by the “facilitator.” Other professional associations have warned members against using RPM (Irish Association of Speech & Language Therapists, 2017; Speech Pathology Australia, 2012; Speech-Language and Audiology Canada, 2018).”