Category Archives: Uncategorized

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.

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).”

My Mother and I Were Interviewed on Canadian Radio

Out in the Open

with Piya Chattopadhyay

Sunday March 04, 2018

‘Communication is a basic human right’: How this man with nonverbal autism found his voice

Ido Kedar uses his iPad to communicate.

Ido Kedar uses his iPad to communicate. (Courtesy Ido Kedar and Tracy Kedar)

Note: The following article is from the CBC webpage.

Here is the broadcast: Listen 12:21

 

Ido Kedar is a 21-year-old man with autism, who cannot speak (also known as nonverbal autism). He was told from a very young age that he would never be able to communicate independently.

But when he was 7 years old his mother, Tracy Kedar, says Ido communicated with her for the first time in a way she knew for sure that he understood her.

They were making invitations for Ido’s birthday party. He did not have the motor skills to hold a pencil on his own, and she was resting her hand over his. As they wrote, it seemed to her that he had a flash of recognition.

“I was kind of talking out loud and I said ‘Oh shoot, I forgot this word’ and under my hand I feel his hand spelling it out. And I hadn’t said any of the letters,” Tracy says.

“The system was gamed against me. If I showed intelligence, my mucked up motor system took over.” –  Ido Kedar

People assumed that Ido didn’t know how to read or spell, but by prompting different words, it was clear that he knew more than they had thought.

“I put away the invitations and … I remember asking him ‘Why didn’t you show me before?’ and under my hand I feel him writing ‘I didn’t know how to,'” Tracy says.

She was delighted, but that feeling was accompanied by the realization that he didn’t just have the capacity to communicate and understand in that moment. He had for years prior.

“(I was) overjoyed and very guilty,” she says. “There was a lot of regret for not having discovered it sooner.”

Catching up on lost time

Ido talked to us using his iPad, typing out words one letter at a time. It takes him about three seconds to type each letter. Due to the amount of time involved, we sent him questions in advance.

Ido says that he was just as shocked when his mother discovered that he could communicate.

“I had no hope that my intelligence would be discovered. The system was gamed against me. If I showed intelligence, my mucked up motor system took over,” he says.

Ido Kedar on the hill

Learning that he could communicate prompted complicated emotions from both mother and son. (Courtesy Tracy Kedar and Ido Kedar)

Experts often treated his attempts to show intelligence as an accident, he says, which made it harder for him to believe that he could prove it. So once his mother did understand, Ido shared her joy, but had another, more complicated reaction.

“Honestly I was mad too. I had a lot of resentment inside because of my frustrating experiences being a smart kid trapped in a dumb body,” he says.

Tracy says that some people remain skeptical about his ability to act independently. Even professionals who worked closely with Ido didn’t believe it. However, she says she can live with the need to convince some people that he’s intelligent because their reality prior to her discovery was worse.

“I could deal with them thinking I was a delusional mom in denial. That was far less difficult than believing my son was not ever going to progress,” she says.

Learning to type

As for Ido, being able to communicate opened a whole new world to him.

“My mom and dad found me a teacher who taught me to type independently. Then it became really hard for the experts to refute. But it took time to get to this level of proficiency,” he describes.

Ido Kedar mountain

Once Tracy Kedar new her son was able to communicate, the next challenge became proving it to others. (Courtesy Tracy Kedar and Ido Kedar)

He learned at first using a cardboard alphabet chart, moving on to a keyboard and then eventually an iPad.

“Communicating has enabled me to break free, to not be as trapped by my disability, to help others and to correct scientific understanding of non-speaking autism.” he says. “Communication is a basic human right.”

Both mother and son now work to help people who are nonverbal make the same progress that Ido had.

In 2012, he released a book about his experiences called Ido in Autismland: Climbing Out of Autism’s Silent Prison. He has a second book, this one fiction, coming out soon. 

This story appears in the Out in the Open episode “Divides”.

Typing to Communicate: Tips for Parents Interested in RPM— Just Give it a Go! (Part1)

 

I’m honored to share this informative and personal essay by a brave and generous mother, Susan Finnes. The determination of some mothers to get communication for their autistic children, even when local communication instructors are not available, amazes me. In some cases, people may have easy access to Soma, or other skilled people who teach typing to communicate, like my mom started to do. These teachers can transform lives.

But, what happens to people without access to these teachers, who live far from the opportunity, or who simply cannot afford to pay for lessons? Thankfully, in addition to books, there is now an online forum for parents and YouTube training videos that the author of this essay, Sue Finnes, put together. I think this labor of love that that Sue and her son, Chris, have undertaken is brave and incredible. They are willing to show their mistakes and their successes to hundreds of unknown people. I admire Chris for being willing to let people judge—and Sue, the same.

I am incredibly grateful as an autism advocate that they have created these educational and support networks to help people with autism and their families.

Because it is long, this essay will appear in two parts. In Part 1, Sue shares her journey with Chris into independent letter pointing. In Part 2, which I will post tomorrow, she shares practical tips for those interested in pursuing this with their own children or students.

Thank you again to Sue and Chris.

Ido

 

Questions I had when I first heard about RPM in 2009 :

What exactly is RPM? How can I learn RPM? Will it work for my child?

I scoured the internet looking for answers, looking for examples and could not find a lot of information. I had seen a short video of Soma (Soma Mukhopadhyay, who developed RPM) a couple of years previously and had formed the opinion that RPM was not for me. I saw her talking quickly, maybe even doing a poem with a child who did not look at all interested. Why on earth would I want to do this with my severely autistic non-verbal child – surely it was more important to focus on speech and how to dress himself?

Christopher was aged 10. His speech had not developed, we had made some progress with getting dressed and we worked mostly on social/interactive play skills. His communication was limited to the use of gestures to show what he wanted (eg. pointed to his bottom for toilet) and to taking us by the hand to lead us to what he wanted. I had done some basic word picture matching using flash cards. I was desperate for Chris to have a communication method – something more than a PECS system (where you have pictures of objects) and something others would be able to understand – so not sign language. I looked again at RPM – I saw a video this time of Soma teaching a child to point using written paper choices and realised that this was something we could possibly work on. I experimented – using a well-read Teletubbies book – asking what did the Teletubbies spill ?– tubby custard or water? I ‘m ashamed to say now that I was surprised when Chris chose the correct answers – you will see me smiling on this clip from Oct 2009 https://youtu.be/ajDvQEUBgqE . I thought I’d always believed and accepted him , but now we were moving onto something with huge potential ! Here is another short clip November 2009 – you will see that I quickly moved on from Teletubby books to the history of Bonfire night https://youtu.be/BIBn67V608Y . Please note that my techniques here were not very good !

From that moment on I exposed Chris to more age appropriate topics and began to talk to him more about everything –and started WRITING EVERYTHING DOWN assuming that he understood. We worked on getting him to point to the written choices. We took his interests /motivations and expanded them – bringing him interesting information eg singing twinkle twinkle lead to talking about the solar system. I did not think that Chris would cope with a long flight to the USA to see Soma , but found out about the Barrett family in the UK whose daughter Heathar had achieved success with Facilitated Communication, so I enlisted their help and early in 2010 we began to learn how to support Chris to type. I remember them telling me that I had to believe that Chris had been like a sponge taking everything in all these years – but with no means of showing us. It took MANY MONTHS of daily practise before we were able to get anything from him, which made sense, but when we did, it showed me how intelligent he was. I and Chris’s other helpers practised with him every single day and we were eventually giving light elbow support while he typed.

Fast forward to 2011 – I heard that Soma was in the UK and managed to get some sessions. I didn’t fully understand RPM – i thought i’d just take the good bits and adapt it. This was another WOW moment for me – the types of lessons Soma presented were way more advanced than we had been doing . Even though I saw Chris pointing independently with the stencils with Soma , I decided that I wanted to stick with FC for longer answers and would do written choices for other questions. Again we stepped up to the challenge – I started to work my way through a Biology student workbook, another helper did Physics, another Maths and Poetry. We made good progress -I realised that Chris was capable of learning , and was finding it interesting and stimulating. We were able to see Soma again in 2012 – this time I and Chris’s team were fully prepared ! We all studied Soma’s red book beforehand and we analysed in detail what she was doing in her sessions .

The penny dropped ! This method of teaching was not just about presenting information and checking student understanding –the stimulating information was the tool which enabled you to engage the child while working towards the skill of INDEPENDENT pointing/typing . It also enabled you to stimulate thinking and reasoning skills and taught the student how to express his thoughts and opinions. From that moment on we changed from supporting Chris to type , to teaching him the skill of independent pointing – beginning with the stencils.

Chris had at least 3 RPM sessions every day with different tutors. Initially there was lots of prompting – verbal ( eg. ‘up up, , lift your elbows’ ) , directive (eg ‘touch here’) and air prompts ((waving your fingers over the stencil in the direction of the letter). If Chris was struggling to get a letter we also had to motor model the movement with him – showing him hand over hand ‘this is how you touch the B ‘ (doing it twice hand over hand then immediately asking him to do it himself) ‘now you touch it’. I set up records on my PC – and after every session the tutor would record their notes from the session. We found that the process of writing up notes also helped us to analyse our own sessions – looking to see how much talking we were doing and how many responses we were asking for. Many sessions were filmed and I also set up skypes with Soma to get feedback. Up until 2016 Chris was having a minimum of two RPM sessions a day ,5 days a week . He is currently using the laminated letterboard and we are working on independence by beginning to get him to hold the board himself for a few letters/short words . Here is a short clip to illustrate.. https://youtu.be/vGL5Xb5o2lA

We have incorporated lots of purposeful movement into his programme – physical exercises, dancing, picking up and passing objects etc. I feel that we would have made more progress but have had setbacks with Chris’s health – he developed epilepsy and has frequent seizures which take time to recover from. As he is transitioning to adulthood Chris now also attends a skills centre two days a week and works on motor skills, living skills and independence skills. He is also learning to use the letterboard in different environments and with different people.

 

See you tomorrow for Part 2!

 

Learning to Communicate Changes Lives, Part II

My book, to my amazement, has impacted lives in many far-flung places. I get letters from all over the world.

I was so happy to read this article from Ireland that more people should read. This isn’t an Irish tale. It’s an autism tale. Once again, a mind and a soul is set free by a letter board. I love how Caoimh (pronounced Keev) was liberated by his persistent mother. I toast all the persistent mothers who don’t give up, from Soma, to my mom, to Caoimh’s mum in Ireland, and all the others. He is one of a measly 40 in Ireland who type, but I know there will be more.

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Learning to Communicate Changes Lives

Here is proof that learning to communicate changes lives. I get thrilled every time I hear how my book has helped others move to communication. Life misunderstood, isolated and silent is not an adequate result for  years of therapy and a parade of specialists who marched through this family’s house.

There are stubborn people who have to listen to us, but they won’t, I’m afraid. But there are open people who have listened.

Things are improving, little by little. Here is one family’s story.

Autism in France

The post you will read by guest bloggers, Laurence Le Blet and Karen Hatungimana, and a linked essay by Nicolas Joncour, are about the situation for nonverbal autistic people in France currently. I was unpleasantly surprised to learn how behind France is in educating people who have autism or in supporting children and families. I have many complaints about the system here in my own community but I know that I have been very lucky too. While an unwelcoming school or an incompetent aide has been part of my experience and has negatively impacted me, it has not been my entire experience. The opportunities I have been given to get a normal education, to have a trained aide with me in school, to have the chance to get a college degree and even to become an advocate for people with autism has been a blessing I cannot take for granted. It is time to change the paradigm about autism in France.

“The Right to an Education”, Article Typed by Non-Verbal Autistic Piano Student with Dyspraxia


Guest Post

by Laurence Le Blet and Karen Hatungimana

The situation in France for autistic people has progressed very little for many years. The professional orientation of case-managing organizations, medical-social institutions and specialist doctors is still largely psychoanalytic. The National Health Authority, (HAS), does not recommend psychoanalysis, and specifically condemns the “ le packing” treatment (in which a patient, wearing only underclothes, or naked in the case of small children, is wrapped in towels and soaked in cold water for the stated goal of enabling the child to rid himself of “pathological defense mechanisms.”

Image result for le packing autism

Despite these recommendations, these treatments remain widely present and the national institutions have not caught up with new recommendations for autism treatment. These archaic and outmoded approaches are found in all institutions: justice, health, schools and in society in general. In fact, societal ignorance regarding autism is so pervasive that reports made on parents and subsequent social placements are many; children are always at risk of being removed from their parents custody.

Although autism has been officially recognized as a disability since 1996, the training of nurses and special educators is still mostly based on psychoanalysis and autism is widely seen as a psychosis. Consequently, children with autism are not encouraged to attend regular schools with their same age peers. Despite the legislative Act of 11 February 2005 on Equal Rights and Opportunities, Participation and Citizenship of Persons with Disabilities, the educational situation for autistic children has barely changed. Only 20% of autistic people are enrolled in regular schools, mostly not full time, and parents have to fight for their children to be and remain in ordinary primary school. Most autistic kids are referred to medical educational institutes or day care hospitals at a very early age (from kindergarten), where the right to schooling and the ability to participate in society is limited. Medical-educational institutes and day hospitals are supervised by the Ministry of Social Affairs and the Ministry of Health )

Another factor negatively affecting the ability of autistic children to attend regular school is due to the fact that many children do not have the necessary trained support. Children may wait a long time to obtain a personal assistant and until then, must remain at home. However, many assistants are not adequately trained nor do they have a good understanding about autism. Additionally, most schoolteachers believe that students with autism suffer when they attend a regular school and they believe the child should be removed from the school and referred to specialized institutions. When parents are not well informed of their child’s potential to learn, as well as their basic rights, (and most of the parents are not), they are pressured to enroll their kids in medical-social institutes. Those parents who believe in their kid’s potential and capabilities are accused of making their child suffer in a regular school, or are told that his presence in a regular school makes the teacher and other students suffer. Thus inclusion is strongly discouraged. There have been a few lawsuits by parents, however this is rare.

There is a lack of understanding of integration and inclusion concepts. Parents of children with autism who strive for inclusion have to overcome innumerable obstacles including: delayed or obsolete diagnosis, absence of proper care advice, fighting for financial support, and most significantly, the permanent anxiety of the psychiatric hospitalization of their children after their death because nobody would be there anymore to fight for them.

The Committee on the Rights of the Child (UNO) has issued its conclusions on the implementation of the Convention on the Rights of the Child.

Here is an excerpt:

The Committee urges the State party to take immediate steps to ensure that the rights of children with autism, , And that these programs are in conformity with the recommendations of the High Authority are authorized and reimbursed. The State party should also ensure that children with autism are not subjected to forced institutionalization or administrative placement and that the parents are no longer subjected to reprisals when refusing the institutionalization of their children. “

In France, despite there being laws and recommendations for good autism treatment, most are not widely known and they are not consistently implemented throughout society. Money that is designated to medical-social institutions would be better applied to education. Inclusion should be effective throughout the entire life of a person with autism.

France ‘s motto « liberté , egalité , fraternité »  should be for all.

Image result for france

 

 

Autism Exercises

Exercise helps me in every way. When I was young I suffered daily from having a mind that couldn’t control my body well. It made it hard for people to realize I was intelligent. I have worked for years on improving this skill and continue to do so. One of the ways I do this is through exercise.

I believe exercise is incredibly important in helping people with autism. I use exercise often to help me control my feelings or my energy level. Of course, it also helps me to have better mind/motor communication, better motor planning, better fitness and even to participate in certain physical activities or sports I never could do before.

I exercise in a variety of ways including hiking, bicycling, riding a scooter, jogging on a treadmill, swings and trampolines, as well as working out with  trainers.

I share below a few short film clips of me working out as well as a photo of me sawing a tree branch on a two-man saw with my dad.

Parents: Don’t be afraid if your kid isn’t fit yet or even into moving. It took me a long time to get to this point. You can build up the skills and interest over time by starting slowly but making it a part of the regular routine. It’s so worth it!

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