Category Archives: autism

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).”

Guest Post: Running Toward Myself

This essay by my friend, Dillan, is about his love of running. For him running serves many purposes. He channels hyperkinetic impulses. He gets fit. He interacts with others. But here he describes one more thing– the mental benefit. He mentally gets liberated from autism while running. How lucky to get a respite from autism.

I encourage people to exercise. Living with autism does not mean we must not exercise. It helps in every way. But respites can be found in many things, in music, in swimming, in learning- simply in moments when joy breaks through the symptoms.

 

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Dillan’s Introduction:

I have experienced many challenges in my life with the autism that takes root in my actions, my thoughts, and my feelings. However, I have also been blessed with gifts, and I am going to talk about one of them today. I wrote this essay for my college applications, and it means a lot to me that you will also read these words about the times when I can leave my autism behind.

Running Toward Myself By: Dillan Barmache

It would be easy to write about autism. I always have that inspiring story in my pocket, The Boy Who Had Autism and Learned Anyway. In this moment, however, I want to talk about the moments when I can separate myself from autism, even if it is only for a short time. Those moments come when I run.

I am on the cross country team in the fall. I run track in the spring. I wake up early in the summer and run miles just because I want to. I am fast and my legs are strong. My body moves with certainty and obeys my commands. That means more to me than it does to many others because in almost every other moment of my life my body is a mess. The chasm between what I want my body to do and what it does is huge and everyone who spends more than five seconds around me can see it plainly when I run my hands through impulse patterns and babble in nonsense noises. So, when I run, those moments of control are like air to the drowning man. My body goes exactly where I want it to.

My most ambitious event was the time I ran a half-marathon with my dad. He and I trained hard. This was, after all, the longest run of my life. As we trained, my dad would strain to keep pace with me. I would wear him out with my voracity for the trail, eating up the ground beneath my feet. We trained until the day came when we had to go to downtown LA and put our feet to the pavement.

You could think that a run like this would be easy. I’ve established how I love running. I’ve talked about being good at it. However, I have so much more to consider when it comes to an event like this. I would be surrounded by strangers. I had to sleep near the event in a strange hotel room with none of my familiar comforts. My routine was crumpled up like a piece of scratch paper and tossed away. To a person like me these are major, catastrophic concerns. My parents have to constantly wonder how I will react. Will I be able to handle it? Will I break down and freak out and have to be pulled away into a quiet room where the strangers’ eyes won’t see my weirdness? I felt not just my own anxiety, but the anxiety of my parents as they tried to plan for every problem and prayed for the things they can’t control to just go smoothly.

Just before the marathon the runners gathered at the starting point. The buildings of downtown LA loomed over me. They closed in like giants and all of us gathered runners were packed in together. I did feel the energy getting wild inside me. I felt my control slipping. I felt the autism that wanted to take over and become everything my parents and I feared. Then, the signal came and it was time to run, and none of it mattered anymore. The threat was over the instant my legs started moving, because then I knew exactly what to do. Run and run and run.

I finished the half-marathon just like the waves of people around me did. I was part of them and I fit seamlessly among them. You can’t imagine how rare that is for me. I am always either the odd boy off to the side with special needs, or I’m the miraculously intelligent boy everyone is shocked can do anything but flap my hands and repeat simple words. I’m always different. I’m always other. But when I ran that day I was just a runner. I was just Dillan.

 

 

 

A Ten Year Old Advocate

My young friend, Diego Peña, has learned to become a fighter for nonspeaking children with autism. He is in general education, and has been for a while. Each one of us who accomplishes this is kind of like an icebreaker opening potential channels for other students to follow. It isn’t easy. I share a nice article about him with an interview. Contrary to the article’s implications, you can’t just hand an iPad to a motor impaired autistic kid and magically have perfect typing. It’s a process that takes instruction, time and practice, and it doesn’t happen at three, for the most part. ‘Typing,’ isn’t defined either. To clarify, it’s one finger typing. Diego’s success is good enough on its own merit that it should be applauded for what he has done, without embellishment.

So, without embellishment, Diego is a bright ten year old who has autism and doesn’t speak verbally. He has been a successful general education student in regular classes for several years, though not since he was three. He learned to communicate by touching letters painstakingly. He has the parents and the aide and the school environment he needs to thrive and to prove himself. And this he is doing every day.

My New Book Update

For the past several years I have been writing a book. It has been interesting and hard work for me. I can’t write swiftly like a ten finger typist would since I can only point to letters or type with one index finger. Because of this, I have to always keep my plot outline and my scenes planned mentally  because I am able to write just a few paragraphs at one sitting.

But, my book is at last finished. It is now in the final proofreading stages and it is in the process of having the cover art designed. It should see the light of day in a few months and I will give you more information as it goes.

I will share with you that my new book is a work of fiction. It tells the story of a boy with autism named Anthony. I hope when you read his story that you will come to care about him and his family and his two worlds.

Music in Lights

Have you heard of synesthesia? It is when your sensory system mixes your sensory perceptions together. In other words, you may see things others only hear, or taste things others only see, and so on. I see music. I always have. Of course, I also hear music but I get it in 3D with my own laser light show.

My favorite music to hear and also watch in synesthesia are two pieces by George Gershwin, his wonderful Cuban Overture and his amazing, An American in Paris. Close your eyes, listen, and try to imagine this music in lights.

I complain often about the hard parts of autism, but here is a nice feature.

Art for Fine Motor Challenges

IMG_1762I have found a great way to enjoy art without having dexterity in my hands. These mosaics were pretty fun to make and were something I could do despite my clumsy hands. The design is up to you, limited only by your imagination and the number of pieces in each color.

IMG_1456(For those interested, the product is Colorado by Hearth Song). *Note: I am hearing that the product is no longer available, so perhaps it has been discontinued by Hearth Song. A friend got me mine at a garage sale, so maybe it can be found used on eBay, or possibly something similar is manufactured by another wooden toy company.

IMG_1731ido mosaic

Book Review: Plankton Dreams

I belatedly heard about Tito Rajarshi Mukhopadhyay’s newest book, Plankton Dreams: What I Learned in Special-Ed, which he wrote in 2015, so my review here is two years late. In my opinion, that’s no sin. We authors get lots of reviews in the beginning, but few later on. Since this book deserves your attention, it’s good to write about it later on too.

For those who have not heard of Tito, he is Soma’s son, the first recipient of RPM, or however she referred to teaching her son how to communicate at the time. While everyone else with autism got 1+1 and play-doh, he got physics and Socrates and a true classical education. This is home-schooling Soma style. When scientists heard about Tito and his erudition and independent skills typing in a very autistic looking exterior, they wanted to study him, test him, and so on. I first heard of him just before I learned to type. My experts said he was “one in a million,” and my ABA supervisor said he wasn’t really autistic because his typing proved he had been misdiagnosed. In other words, he has been knocking down their doors for a long time and each book pushes a bit harder.

This memoir “novella,” (it is a short book), is sad, funny and biting satire. When Soma and Tito moved to Austin, Texas from India so she could teach communication to autistic kids, Tito had to go someplace during the day while she worked. The system being what it is, this brilliant, educated young man who moved autistically, got sent to a special day low expectation autism class. He used this time to analyze, like an anthropologist or social scientist, the absurdity of his situation. He studies “scientifically,” how people react to him sniffing their heads, rummaging in their purses and spinning their chairs. All for the sake of science! He savages the system.

“I created my own learning goals…” he writes. “I analyzed the responses of people to these situations—what I call my social experiments. I became an empiricist. Why shouldn’t the autist study the neurotypical?”

Here he conducts a head sniffing experiment on his teacher, among others.“Mr. Gardener…did not want me to sniff his head. He would rather dodge my approaching nose or stand on his toes so that my nose could not do what it longed to do. Mr. Gardener was bending over his desk, providing a rather complete view of his head.” And like a scientist, he collected data. “He jumped higher than the bus attendant—I could tell. It was a perfect jump, his star like head antigravitating away from Planet Earth.”

He describes the people in his world in special-ed: the students, the teacher, the aide, the teaching assistant, the administrators, the bus driver, the do-gooders (“Mr. Goodness Gracious”), and also his own boredom in this environment. Tito conveys his surreal existence, bored and analyzing his boredom through his sensory lens of highly educated philosophy. Sometimes the book is laugh out loud funny. Sometimes it is tragic-comedy. This book is unique because Tito is fully into Autismland perspective as he writes.

 

Part 2 Typing to Communicate/ Tips for Getting Started/ Give it a Go!

Guest Post by Susan Finnes

I am passionate about RPM! I realised that many others could use this approach – but how could they learn ? There were very few teachers and only one Soma! I started to share videos of myself and others working with Chris on my YouTube channel and people from all over the world started to contact me asking for help to get started.

I knew I could do more – Chris was telling me that he wanted to help others to learn, so in 2013 I began to organise annual Soma workshops in the UK and I set up a facebook parent support group (intended for UK families, but it quickly became international). This is the link to the group Unlocking Voices – Using RPM https://www.facebook.com/groups/627199673958985/

My objective is to EMPOWER PARENTS so they can learn Soma RPM , even without having direct access to a teacher – and to learn it correctly. I want to make it easy for people to try it and then to share their learnings, to make RPM accessible to people all over the world by providing free learning resources which supplement Soma’s books. I would HATE to think that RPM was only for the ‘rich’. I maintain close contact with Soma and encourage her to share her learnings on the facebook group. One of Chris’s helpers – Alexandra Hopwood is now a highly skilled RPM Teacher (she completed an internship with Soma) and she helps me to make short tutorial videos which have proved very popular! The video links are available in the RPM Learning Resources file (one of many free resource files linked to the facebook group).

Here’s an example of one of our videos : ‘ 1- How to do written paper choices – basic principles’

https://www.youtube.com/watch?v=slfnouqFqnEake

If you are wondering about RPM I’d like to urge you to join our group and make use of the free resources – what have you to lose? When I presented at the 2017 HALO RPM conference I was delighted to meet many parents who I recognised from the Facebook group and who have now gone on to set up their own local support groups and trained to become RPM teachers themselves.

I know that many parents join the Unlocking Voices- Using RPM group and see the examples of RPM working but fail to try it themselves for months or years. Or try it a few sporadic times and drop it for months or years before finally giving it a proper go. For many, RPM seems to be a ‘last resort’ – nothing to lose.

Why is this happening?

I think many people don’t believe or are afraid to believe for their own child – particularly when all the so-called ‘experts’ seem to spend so much time telling them what their child CANNOT and will not be able to do. Why would we not believe these experts? Every time your child fails to follow a simple instruction, or does not respond in a neurotypical way to an event, eg. no excitement at birthday/xmas, this serves to cement the belief that there is a huge lack of cognitive ability. On the other hand many parents I have spoken to will also say that their child is underestimated by teachers and give great examples which to me prove intelligence and learning capability eg . problem solving skills – finding escape routes, figuring out how to use dvd players, knowing when food cupboards are open , responding to their name. This proves that the child is capable of learning if taught in the right way.

Some parents I have spoken to do not believe in themselves – they do not believe they are capable of delivering effective RPM sessions. I can understand this – particularly if you have seen Soma or another experienced teacher. They make it seem so easy and then you have a go and make a total mess of it. Believe me, we have all done that ! I think it teaches our children a valuable lesson – we are showing that you will not be perfect when you are learning a new skill –so not to be afraid of making mistakes and not to give up but to keep practising . You are not going to do any damage to your child by trying a session and not delivering it perfectly – you will only get better with practise.

I think that some parents may try RPM a little and “fail” without realizing they haven’t tried in an effective manner or given their child nearly enough opportunities to practise and progress in his skill and tolerance. Often seeing or skyping with an RPM teacher can rectify this, but equally there is a need to understand that RPM progression will be different for each student – so it’s ok to try it without thinking there needs to be an initial BIG BREAKTHROUGH or it’s a failure for the child. For many students the process is a long one – lots of daily practise for a year or longer without open communication. This takes resilience from parents who are ‘desperate’ to talk to their child and seek proof that all the time invested will be worth the effort.

Those parents who haven’t tried yet may be daring (or maybe afraid) to hope that their child will type independently and share sophisticated thoughts IMMEDIATELY. Then if they try and don’t succeed in this there is a feeling of desperation and failure.

I understand all of these feelings –

I know any time I’m thinking about learning something new, a few things happen inside of me:

– I think about it and usually order a book /do some internet research
– Tell myself I don’t have time.
– Talk myself out it.
– Think about it some more.

– Tell myself I need more training /help
– Procrastinate some more ( I have MANY unread books!!!).

 

What I know now is that the MOST IMPORTANT THING is to simply TAKE ACTION AND TO HAVE A GO WITHOUT EXPECTING PERFECTION!! Then to KEEP GOING and LEARN from mistakes.

 

Please don’t judge your child’s potential by what he does with his body – Ido explains this really well in Ido in Autismland . I urge you to read this book and to share it with anyone who works with your child.

Chris is 18 now and we have to think about his future. This year we talked to him about the Mental Capacity Act -all Chris’s responses were made by pointing to a laminated letterboard. You will see on this clip that on this day he needed more tactile feedback – so the teacher is pushing the board towards him as he touches the letters. I like what Chris said ‘ the capability of the body and the mind are completely different’ https://youtu.be/syt6QnV_6vA

A;You may have heard your mum talk a bit about this , As you get older you’ll start to hear the term ‘mental capacity’ more and more…. what is your understanding of this?

C: IT IS ABOUT IF THE PERSON HAS THE CAPABILITY AND INTELLIGENCE TO MAKE DECISIONS PERTINENT TO THEIR LIVES.

A:Very good…what type of decision do you think, give me an example of a decision?

C:WHERE THE PERSON WANTED TO LIVE .

A: Do you think sometimes people assume people with autism don’t have mental capacity (eg I’ve come across people who were deemed not to have mental capacity but actually did..)

C; THE CAPABILITY OF THE BODY AND MIND ARE COMPLETELY DIFFERENT

A; I like that point – eg look at S Hawking– his body vs his mind. Do you think that’s why a lot of people struggle/confuse the two?

C: THEY CAN’T GET PAST OUR BODIE.S

Thanks for taking the time to read this – I hope you are inspired to just HAVE A GO !

 

Sue Finnes is an autism advocate, YouTube educator, and the moderator of Unlocking Voices-Using RPM Facebook parent learning group. She is the mother of Christopher, aged 19, who describes himself in this way, “I am intelligent but happen to have a body that doesn’t obey my thoughts.” They live in the UK.

 

 

 

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!

 

Communication Changes Lives- The Poet

I have never met Sami Kadah, nor did I know about him and his poetry exploring his life with autism, until his communication partner, Jeff, wrote to me.

Sami was locked inside with no communication for 23 years and he has been typing for two. It seems he has a lot to say. He says it in poetry form. In his poems, he opens his soul to pour out how autism controls his life. He writes so that each word matters. He is stingy with his words. They each say a lot.

Sami hurts from autism and he is worth reading. Communication changes lives, for sure.

Number 15, by Sami Kadah 

I am superstitious.
I am also religious.

I am smart.
I am also an idiot.

I want help.
I am also helpless.

I want to be independent.
I am also incredibly needy.

I am intentionally thoughtful.
I am also unpredictably impulsive.

I am physically affectionate.
I am also agressive and violent.

I am human.
I am also autistic.