I watched an intriguing documentary available on Amazon Prime called The Brain that Changes Itself. It is a film based on a book by the same name written by Norman Doidge. I recommend both. They address the developing area of study in neurology of neuroplasticity. This is an important development because for too long scientists have assumed that the brain was fixed in its wiring and that certain conditions were permanent. The film shows how some innovative neuro-scientists have discovered that this is not the case. They show how, with the proper training, some people with severe challenges have literally rewired their neural pathways and overcome incredible things. They call this neuroplasticity because the person’s brain developed new neural pathways when those pathways biologically intended for a particular function were damaged beyond use. This alternate neural highway gained in competence and ultimately adapted to function normally. One scientist compared it to being stuck in traffic on the main highway, not moving, or taking an alternate side route that, slow at first,ultimately developed over time into a new super highway.
One scientist described his belief that autism is caused by an excess of neuroplasticity. He works at trying to reduce the overload of information that enters the brain of people with autism and creates in them behavioral loops. I found the film fascinating and hopeful because it emphasizes that the brain remains plastic throughout adulthood. I encourage you to watch it. I’m interested in your impressions.
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 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.”
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.
Twice recently when I have been out grocery shopping with my dad, while waiting to pay the cashier, he, not me, has been approached by a do-gooder who tells him that she has a program for people like me. He says thanks, but no thanks.
They tell him it is good to get me out in the community like this and they talk to him as if I’m not there and not understanding the conversation. He tries to escape quickly, for both our sakes.
They mean well. I get that, but they occupy the traditional, patronizing, benevolent model of disabled outreach and education. They must rescue me.
No thanks, ladies.
Do they walk up to a guy in a wheelchair, ignore him, and tell his companion they have a program for him and how great they are for bringing him into the community? That would be pretty funny if they wanted a lawsuit, but lucky for them, I’m not speaking and that gives them the freedom to assume I’m just like all their other charges– which may actually be true, just not in the way they think.
I have received a lot of questions about exercise and autism since my last post. From my own experience, when I was small one of my OTs looked at me and remarked that I had low muscle tone like most people with autism. She then did nothing to work on fitness. She loved the swings, however, like most of my OTs to vestibular and propriocept me.
In school my APE teacher followed a routine I believe must have been designed for a different motor disorder than mine. The movements were too hard for me to motor plan at the time which led to frustration.
Most people don’t imagine that people like me have the potential to be fit. I know it’s possible. It takes longer than a normal motor system to improve but it can still improve. It can be hard at first, so persistence through resistance is essential. You have to be aware of real challenges like motor planning, muscle and tendon tightness and other issues common with autism that can interfere with success. For example, bilateral movements, moving arms and legs simultaneously in an exercise, and transitioning movements can be really hard for some people and frustrating until more motor control is achieved. People make a lot of adaptations to compensate for the motor difficulties. For example, if jumping sideways is hard to plan, a person might consistently turn forwards. You can build up to the skill incrementally in many ways, such as stepping sideways at first, stretching the hips and working on jumping in general. If someone can jump forward with ease but takes many seconds to jump sideways or backwards, you are likely looking at motor planning challenges which can improve with practice.
The goal is to make moving fun as well as a key to emotional balance and fitness.
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!
I have written previously about my love of cooking. Cooking has given me a lot, and I’m not just referring to the food.
I have to remember instructions in recipes (multi-step planning, for all you OTs out there). I have to search for and retrieve ingredients, utensils and cooking tools. This is important for people who have autism.
I have to handle sharp objects and hot objects. I am aware of personal safety.
I have to control impulses and not eat unfinished food (especially cookie dough).
I have to work on fine motor skills in chopping, pouring and measuring.
I have to be patient, plan, anticipate and multi-task.
I have to be present while it cooks.
I learn self-help skills washing up.
All in all, it’s an “OT session” I can have fun with since I’m actually doing something meaningful.
My son Christopher is now 17. He is non-verbal and outwardly behaves in a way which would lead people to believe he lacked intelligence/understanding. The Rapid Prompting Method (RPM) has enabled Chris to show us, through pointing on a letterboard, that he is a creative and intelligent young man.
Ido has been an inspiration to us – his book particularly helped me to understand and to discuss with my son the issues he faces with his motor control/purposeful movement. When people see students like Ido using his iPad independently it is only natural that they aspire to getting their own children to this stage as quickly as possible. There is often a lack of appreciation of the amount of work that may need to be done before getting to that stage.
People say to me, “Why don’t you just get Chris to type straight onto a laptop?”- if only it was that simple! It is important to understand that the amount of time it will take to develop the pointing/typing skills will vary greatly between students and, as Ido has already explained in his book, the belief of the people who surround the student will also have a huge impact on progress.
I am sharing parts of our journey here primarily to help give some more perspective on this skill building process as, for us, it has taken a long time and is still a work-in- progress: — We first saw Soma in 2011 for six RPM sessions (and have seen her each year since then). Chris started pointing on the 3 large stencils and each day we saw how Soma built his skills through verbal and air prompts until he was able to point on the single A-Z stencil. We were also able to observe other students who were at different stages of RPM – some who had more motor challenges than Chris – some were already using iPads. It was clear that everyone had their own rate of progressing.
These first sessions were all a bit of a whirl wind. At the time it was difficult to fully appreciate exactly what Soma was doing and why – as a parent you find your emotions run high and it is hard to detach yourself and analyze what is happening.
It was hard to replicate Soma’s success at home. Chris was ‘all over the place’ – how had he been able to have a conversation with Soma? I had a small team of people working with Chris and we realized that we needed to first build our own skill levels before we could help him to move forward. How did we do this? – by analyzing and studying the videos of the sessions : how did Soma pass the pencil? What angle was she holding the board at? etc, We transcribed word-by- word Soma’s sessions –looking at how she phrased her questions and how she gave verbal prompts. Then we practised, filming ourselves, writing up our sessions in detail and giving each other feedback – continually setting improvement goals for ourselves.
Our learning never stops – constant analysis needs to happen even now as issues are always coming up e.g. Chris may spend time with his hand wandering around the board before getting to the letter he wants. When this happens we need to work out how to help him with the skill of getting straight to the letter.
One aspect of RPM which I feel is particularly important to appreciate is that it works using academics. Learning the skill of accurate pointing on a letterboard would be exhausting and tedious without a context. The teach/ask part of RPM lessons not only provides intellectual stimulation by giving Chris interesting information but also, when he is giving us ‘known’ responses, we can identify his motor challenges and the issues/skills we need to work on. We present a wide variety of age-appropriate topics – history, biology, physics, poetry, current affairs, art.
We also work on the skill of open communication – beginning with single words and gradually increasing to longer outputs. This is another important point – all of Christopher’s most creative and expressive work has been as a result of an academic lesson. There is a skill to this – we don’t just say, “now how do you feel about that?” We instead explore something related to the lesson and maybe discuss it in the third person eg. ‘if you were living in that era and writing a diary entry what would it say?”
– Once we had built up our skill levels on the stencil it was time to push Chris forward onto the laminated letterboard. This was after six months of practise on the stencils – (three sessions a day) and it was gradual transition – sometimes just a few letters on the laminate. At first we held this vertically and gradually began to tilt it. This process will vary greatly with different students -some need lots of ‘mirroring’ from one board to another, others can transition in a few sessions without a lot of help.
When you find a way to hold the board that works for your child at an angle that suits their ability to point accurately and have open communication it would be easy to stop and think you have achieved your goal. However this will always leave the child reliant on a skilled facilitator – I am always looking to move Chris on to the next skill to enable him to eventually become fully independent.
– So five years into our RPM journey Chris is currently pointing quite confidently on the laminated letterboard when it is held nearly horizontally. He can also point on a QWERTY keyboard which is held at a slight angle. He still needs verbal prompting to ‘keep going’ and his tolerance can vary greatly from day to day (he is also affected by some ongoing health issues).
We are working on his independence by mirroring words to either the laminate or keyboard flat on the table or held by him. I have learnt that it is not a great idea to compare Chris’s progress to others – e.g. some students can easily move from one board to another, some have the ability to ‘match’ so can easily touch a letter on the laminate and then on a keyboard. Chris, on the other hand, has to learn this all through muscle memory so requires continual practice and repetition – and lots of verbal/air prompting. I have helped other students to get started with RPM and learnt that every student is different and will progress at their own rate – so there is no rush.
Over the years we have done lots of skill work outside of the RPM academic sessions. I believe that all of these things also contribute to his improving letterboard skills. Skills have included physical exercises (including participation in Special Olympics events), horse riding, playing games, learning to draw, helping around the house.
Everything we teach is focused on helping Chris to move his body purposefully and independently. Each action has to be broken down into small component parts, explained and motor-modeled so his muscles can learn how the movement ‘feels’. Just to explain further , Chris cannot just imitate an action -I have to physically lift his leg, touch his thigh muscles telling him to engage them to show
him how to step over a hurdle. Then we have to practise, practise, practise and practice until he has the muscle memory to enable him to move onto the next skill – running over the hurdles (he can do this now!). I believe it is possible to teach him anything – but it will take longer than for other people.
In a recent discussion with Chris he wrote, “MANY PEOPLE
DO NOT REALISE THE IMPORTANCE OF BUILDING SKILLS. I DIDN’T REALISE THE IMPORTANCE MYSELF UNTIL I BEGAN TO WORK ON THEM. BUILDING SKILLS IN A VARIETY OF WAYS – RUNNING, SPORTS, CRAFTS AND GAMES – IS HELPING ME TO CONTROL MY BODY, LEARN NEW THINGS WHICH BRINGS ME ENJOYMENT AND HELPS ME TO BE ABLE TO BE PART OF THE COMMUNITY.”
Here is a short clip of us discussing skill building in relation to his pointing
IT HAS NOT BEEN EASY. EVERY DAY I HAVE TO PRACTISE.
How do you feel about using the keyboard/ipad?
IT IS HARD TO LEARN NEW SKILLS. I AM SLOWLY IMPROVING BUT IT TAKES A LONG TIME.
What Chris said above I can equally apply to myself. I am constantly learning with him, developing my own skills and know that I still have so much to learn. Some days it seems that the journey is insurmountable – but breaking it into small achievable goals makes it more manageable – one day and one step at a time!
Autism Spectrum Disorder is pretty broad. I met a young woman today who has been diagnosed with Autism Spectrum Disorder. She seemed totally like every other neurologically normal person I’ve met in terms of motor, speech and social skills. Maybe I’m missing something she suffers from, but why on earth do we have the same diagnosis?
If I get a paper cut and you amputate your leg, people don’t say we have a Laceration Spectrum issue. But it’s worse with autism because autism is so many different issues lumped under a huge umbrella.
I have written my opinion previously that I believe that my autism and Asperger’s Syndrome are different neurological conditions with the same name. This confuses people. Temple Grandin is unable to read people, thinks visually, speaks, and needs no 1:1 support to get on with her life. I am her opposite. I have great insight into people, think in words, can’t speak to save my life, and need 1:1 help.
Somehow the brilliant minds looking into autism haven’t noticed that the opposite symptoms might be different conditions, not a spectrum. Her condition may primarily be a neurological difficulty reading people while mine is primarily a mind/motor disconnect, though both of us may have problems of self-regulation and sensory challenges.
Would it make sense to call a heart problem and asthma a spectrum disorder because they both lead to shortness of breath? Not possible because doctors identify heart issues and lung issues medically. Brain issues are the most unknown, so doctors look only to the external behavior. That’s observational, not medical.
Temple Grandin has poor eye contact. Me too. She talked late. Me too—to the point of still not talking. She has some things similar to me, but they are superficial similarities, in my opinion. So, I have decided to help out the professionals. I am happy to abandon the diagnosis of autism and give it to Temple Grandin and those with similar symptoms since it really isn’t the most helpful term to give people an insight into my medical problem. In fact, maybe we can have a contest to come up with a new name for my kind of autism. I have a few ideas:
Severe Motor Dyspraxia
Mind/Motor Communication Linkage Disorder
Self-Regulatory Motor Control Disorder
You get the idea, no? Maybe a new name would lead to a better understanding and treatment of this neurological condition.
This is Clever Hans. He was a horse in the early 1900s who looked like he was doing simple math equations by stomping his foot. Turns out he was just picking up cues from his handler.
Horses have no innate propensity to develop language, understand complex language or communicate in language. I love horses, but they are horses, not humans. Humans have an innate propensity to develop language, understand complex language and communicate in language; therefore even humans who lack typical access to verbal communication because of a disability still have the capacity to grasp language (except in extreme circumstances).
Humans who are deaf develop sign language.
Humans who can’t speak verbally type or use augmentative communication.
Humans with Down Syndrome understand and speak utilizing the complex patterns of language.
So, why is it so hard for some professionals to believe that humans with autism have innate language capacity?
For example, here is a course in the Applied Behavioral Analysis department at a university (instructor’s name removed), which is described this way:
Ever since Facilitated Communication (FC) crashed onto the shores of the U.S. in the early 1990s, remarkable claims of sophisticated communicative abilities in otherwise nonverbal people with autism have proliferated. FC itself has morphed into other forms, including the so-called Rapid Prompting method. However, regardless of the name, all of these techniques have one thing in common: They claim to show that previously nonverbal people with autism are in fact highly verbal and expressive so much so that the diagnosis of autism is sometimes questioned. This is not the first time in history in which remarkable claims of communication have been made about nonverbal individuals. Perhaps the most famous case was that of a horse in Germany around the turn of the 20th century, named Clever Hans. In this talk, Dr. X describes the story of Clever Hans, including the experiments carried out by the German psychologist, Oskar Pfungst, which revealed the nature of Hans’ cleverness, and its lessons for recent claims of remarkable communicativeness in people with autism. Dr. X urges the same level of scientific scrutiny regarding these claims as with Clever Hans, and suggest (sic) that all stakeholders in autism should approach remarkable claims skeptically and scientifically.
I will analyze this paragraph sentence by sentence.
Ever since Facilitated Communication (FC) crashed onto the shores of the U.S. in the early 1990s, remarkable claims of sophisticated communicative abilities in otherwise nonverbal people with autism have proliferated.
When I was in high school I learned in my English class about loaded language intended to bias the reader. FC “crashed on the shores.” Its claims of success are “remarkable,” because the typed communication of nonverbal people is “sophisticated.” Ha ha. You see, autistic people thinking and typing is a joke already.
FC itself has morphed into other forms, including the so-called Rapid Prompting method.
Here RPM is lumped with FC , the method that “crashed” on our shores, in an apparent attempt to discredit it. RPM is actually a different teaching method than FC, and though it is referred to as “the so-called Rapid Prompting Method,” that is the actual, copyrighted name of the method.
However, regardless of the name, all of these techniques have one thing in common: They claim to show that previously nonverbal people with autism are in fact highly verbal and expressive so much so that the diagnosis of autism is sometimes questioned.
This sentence is packed with disinformation. Nobody questions the autism of people who type except for those who don’t believe that severely autistic people understand language. By their logic, if an autistic person types he can’t be autistic. This is circular logic.
My old ABA supervisor said exactly this about Tito Mukhopadyhay because he communicates by typing independently. He stims. He has every autistic symptom in the books but since he is obviously communicating sophisticated thoughts he can’t be autistic. Ha ha. What would his correct diagnosis be then, and why was he diagnosed with autism as a young child before he typed? It is intriguing that these particular professionals don’t question whether their understanding of autism is correct when someone with autism comes along who challenges their theory. Rather, they claim that it’s the person who is incorrect. My book actually explains pretty thoroughly what it is like having autism.
This is not the first time in history in which remarkable claims of communication have been made about nonverbal individuals.
No, it is not. How can we present autistic communicators as a joke?
Perhaps the most famous case was that of a horse in Germany around the turn of the 20th century, named Clever Hans.
By comparing autistic people to animals. How witty.
In this talk, Dr. X describes the story of Clever Hans, including the experiments carried out by the German psychologist, Oskar Pfungst, which revealed the nature of Hans’ cleverness, and its lessons for recent claims of remarkable communicativeness in people with autism.
As I mentioned, I think a horse is an animal with no innate capacity for language and a person with autism is a human with innate capacity for language despite being severely hampered by bad theories, bad instruction and a severe mind/motor disconnect. (For more information on the mind/motor problem, please see my essay Motor Difficulties in Severe Autism.
Dr. X urges the same level of scientific scrutiny regarding these claims as with Clever Hans, and suggest (sic) that all stakeholders in autism should approach remarkable claims skeptically and scientifically.
By all means, skepticism is good. I have dealt with and convinced skeptics for many years. Biased, hostile people are not skeptics, nor scientists. (See Scientific Un-Queryand More on Scientific Un-Query). By the way, people who have autism are stakeholders too, as are their parents.
Science is filled with stories of people who introduced new theories only to be treated with scorn by professionals who toed the line of the day, but the theories were ultimately proven to be correct. Now we laugh at the obtuseness of the critics in these cases, but they actually ruined lives and reputations.
I’m an autism expert. I didn’t study it in class. I didn’t teach ABA to kids. I did however live and breathe it. I learned that experts and professionals can be well meaning but wrong. I learned that I, and others who type, have much to teach about the truth of the disability. My expertise is solely based on empirical evidence and anecdote. I never ran tests on myself. Nevertheless, I know my nonverbal autism inside and out. My autism is a mind/motor disconnect. It isn’t a language processing issue. It isn’t cognitive delay. It is a real disability, hard to live with, and mostly it is painful to be unable to speak, but not speaking is not the same as not thinking.
I am an autistic guy with a message. I spent the first half of my life completely trapped in silence. The second - on becoming a free soul. I had to fight to get an education but I succeeded, graduating high school with a diploma and a 3.9 GPA. I plan to go to college to continue my education. I communicate by typing on an iPad or a letter board. My book, "Ido in Autismland" is an autism diary, telling the story of my symptoms, education, and journey into communication. I hope to help other autistic people find a way out of their silence too.
My book is now available in paperback, Nook, Kindle, and iBook editions!