Niko Boskovic

= WHAT IT IS LIKE TO HAVE AUTISM =

YOU HAVE TO HAVE IT TO PITY THOSE WHO DON’T. I MEAN TO SAY, SOME THINGS ARE JUST SO FUN THAT I CAN’T IMAGINE WHAT IT WOULD BE LIKE IF I DIDN’T HAVE AUTISM. FOR EXAMPLE, MUSIC IS MY FAVORITE THING IN THE WORLD. THE NOTES TURN INTO COLORS, AND THEY FLOAT IN THE AIR LIKE DUST. NOW WHEN I HEAR A SONG THAT I LOVE, IT MAKES ME REMEMBER THE WAY I FELT WHEN I WAS A BABY: SAFE AND WARM. MUSIC IS ONE OF THE MOST IMPORTANT GIFTS HUMANKIND HAS GIVEN TO THE WORLD.

FOR A LONG TIME, I WAS TRAPPED IN A BODY THAT WOULDN’T LET ME COMMUNICATE. PEOPLE THOUGHT I HAD NOTHING TO SAY. THEY ABUSED MY MIND BY MAKING ASSUMPTIONS ABOUT MY INTELLIGENCE. HAVING AUTISM IS A GIFT! I WOULDN’T GIVE IT UP FOR ANYTHING. I HAVE BEEN AUTISTIC FROM BIRTH. I HAVE NO OTHER MEMORY EXCEPT OF BEING AUTISTIC. MY EARLIEST MEMORY IS OF BEING HELD IN MY MOTHER’S ARMS IN THE HOSPITAL AFTER I WAS BORN.

MEMORIES ARE ORGANIZED IN THE FOLLOWING WAYS: FIRST, THERE ARE THOSE THAT HAVE A STRONG EMOTIONAL RESPONSE. THEY ARE QUITE POWERFUL, AND THEY CAN REACT WITH BEING HAPPY, SAD, OR SCARED. REALLY AMAZING STUFF.

THEN THERE ARE THOSE MEMORIES THAT EVOKE A TIME OR PLACE, LIKE THE TIME I NEEDED TO GO TO THE HOSPITAL TO FIX MY BROKEN ARM. THIS MEMORY IS SO VIVID THAT MY ARM STARTS TO ACHE IF I THINK ABOUT IT. I CAN RECALL EVERY DETAIL ABOUT THAT VISIT. OTHER MEMORIES ARE ONLY BITS AND PIECES. THEY ALL MEAN NOTHING BECAUSE THEY HAVE NO EMOTIONAL CONNECTION TO MY LIFE. NOBODY HAS A BETTER AGREEMENT WITH HIS MEMORIES THAN I. THAT IS TO SAY, REALLY, I CAN PULL UP A MEMORY BETTER THAN YOU CAN IN MINUSCULE SECONDS.

AUTISM HAS MADE MY VISION REALLY STRONG. I HAVE THE ABILITY TO READ A PAGE OF NEWSPAPER IN TWO SECONDS AND REMEMBER THE INFORMATION. A LOT OF MY TIME IS SPENT LOOKING AROUND AND NOTICING LITTLE DETAILS IN THE ROOM. LIKE HOW THE LIGHT OF THE SUN CHANGES WITH EACH PASSING MOMENT. HOW LITTLE SIGNS LIKE KNOWING THE WAY SOMEONE IS FEELING THAT DAY BY THE COLORS THEY EMIT. WHAT I MEAN IS THAT EVERY PERSON EMITS A GLOW DEPENDING ON THEIR MOOD. MY AUTISTIC BRAIN TRANSLATES THIS INTO A HIGH OR LOW FREQUENCY. HOW I CAN LEARN ABOUT WHAT A PERSON IS THINKING IS BY THIS COLOR. SO WHEN I SEE A PERSON WHO IS USING PURPLE, I KNOW THAT THEY ARE PISSED. WHEN I SEE BLUE, I KNOW THAT THEY ARE ANGRY. HAPPINESS IS A WARM ORANGE. SOMETHING LIKE SADNESS SHOWS UP LIKE GREY. I KNOW ABOUT YOUR MOOD AND I TRY NOT TO ABSORB IT. I TRY TO KEEP MYSELF AT A WARM ORANGE ALL THE TIME.

I ALSO HAVE AMAZING HEARING. I CAN HEAR HOW THE OPPOSITE HOUSE FROM OURS HAS A FIGHT OR A QUARREL. I CAN BE DISTRACTED BY THE SOUND OF A TRAIN COMING. A GOOD SOUND IS ONE THAT IS FULL OF LOW PITCH. THIS WOULD INCLUDE VOICES, MUSIC, AND THINGS LIKE A FIRE ON A COLD NIGHT. BAD SOUNDS INCLUDE THINGS LIKE BABIES CRYING, BALLOONS POPPING, AND ICE CUBES IN A GLASS.

SOMETIMES I GET OVERWHELMED BY THE CACOPHONY OF SOUND IN MY ENVIRONMENT. PRESSURE TO GIVE IN TO THE SOUNDSCAPE IS TOO MUCH FOR ME AT TIMES. ALL I CAN DO IT LET IT CONSUME ME, FINALLY LETTING THE SOUNDS IN. ALL I CAN DO IS JUMP IN PLACE AND LET IT WASH OVER ME. NOTHING FEELS AS GOOD AS THAT FEELING. MY CHANGING INTEREST IN SOUNDS SEEMS TO ALIGN WITH HOW I AM FEELING IN MY BODY.

PLEASE UNDERSTAND THAT I HAVE CHALLENGES TOO. HANDWRITING IS IMPOSSIBLE FOR ME TO DO. REALLY HARD. MY BRAIN WANTS TO MOVE THE PENCIL A CERTAIN WAY, BUT MY HAND HAS OTHER IDEAS. ALSO, I CAN’T SAY ALL THE THINGS THAT ARE ON MY MIND. ALL I CAN DO IT RELY ON THE PERSON HOLDING THE LETTERBOARD.

LIVING LIKE THIS HAS MADE ME GIVE MORE THOUGHT TO THE WAYS IN WHICH PEOPLE LIKE ME COULD BE BETTER SUPPORTED THROUGH TECHNOLOGY. LIKE WEARING SOME SORT OF DEVICE THAT WOULD READ MY THOUGHTS AND VERBALIZE THEM FOR ME. I BELIEVE THIS SORT OF TECHNOLOGY IS COMING.

IT IS GREAT HOW I CAN SHARE THIS WITH YOU. MY FRIENDS, I NEED YOUR HELP. I NEED MORE PEOPLE WHO CAN READ THIS AND MAKE THE WORLD FRIENDLIER FOR AUTISTICS. I NEED MORE PEOPLE TO BE MY ALLY IN FREEING USERS OF LETTERBOARDS FROM THESE CONSTRAINTS. MAKE IT A GOAL TO CREATE CHANGE FOR PEOPLE WITH DISABILITIES TO BE INCLUDED IN REGULAR CLASSROOMS. MAKE THEM A NATURAL PART OF YOUR LIVES.

HOW CAN YOU BE AUTISTIC? TRY SEEING EVERYTHING DIFFERENTLY FROM HOW YOU DO AND TRY IT FROM MY PERSPECTIVE.


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RPM : generalize skills

http://www.heedrpm.com/blog/rapid-prompting-method-following-the-leader-guest-blogger
When I first started doing RPM, it was much easier to follow an experienced teacher, someone who had worked with a lot of students with different abilities and had a better understanding of my anxieties and strange body movements, a teacher who could figure out the most appropriate prompts and encouragements that would work for a learner like me. It was a novel thing, learning how to simultaneously integrate auditory, visual, kinesthetic and tactile information and consistently output a coordinated muscle response. Even after I became quite comfortable working with a teacher, it was not easy to transfer my abilities to someone new, since I was quite awkward and anxious, and would immediately tense up and lose motor control, trying to process the subtle and not so subtle differences in prompts. As my own skills improved, I got much better at working with different leads, but it is still a struggle to follow someone who has not sufficiently developed their own skills.

Forgive me for misleading you…that last paragraph was actually about what it was like for me during the year I learned how to ballroom dance as a frustrated science graduate student. In many ways, RPM is much like a dance between two people, the leader and the learner.   When RPM is fluent, the coordination between leader and learner flows smoothly with its own dynamic rhythm.   The best practitioners make RPM look easy.  They have a tremendous skill set, and can find ways to connect with even the most recalcitrant students.  The trouble with the ballroom dancing analogy is that my neurotypical brain is considerably more efficient at integrating and processing sensory information than an autistic brain.  I can usually focus simultaneously on multiple sensory modes without concentrating, and my physical body (more often than not) acknowledges and responds to my mind with good coordination of words, gestures, and actions. The issues I struggled with during my short-lived dance career were insignificant compared to those of an autistic student.  The autistic student must not only interpret real-time sensory information that is often fragmented or overwhelming, but she may also lack the motor coordination to physically (and/or verbally) respond in the appropriate way. Moreover, the same student may lack the motor control to resist an inappropriate physical or verbal impulse despite her frustrated desire to suppress such impulses. Both medicine and therapy have failed the autistic population for 50 years based on this egregious lack of understanding-that severe autism involves impaired sensory and motor integration, not impaired thinking.
RPM is an extremely flexible teaching method capable of targeting the unique sensory system and motor abilities of the individual learner.   RPM is not a cure or a one-size-fits-all therapy designed to mold autistic behavior towards a desired optimum.  RPM assumes only that the student, no matter her education level or physical disability, is fully competent to learn.  Because learning never stops, there is no limit to what can be taught or achieved in RPM.  This is only one of the many ways that the goals of RPM differ from the goals of other autism therapies that aim to help the student "be more normal". Unlike most other therapies designed to promote communication, the considerable flexibility built into RPM places an unusually high demand on the teacher.  Although RPM assumes the student is fully competent to learn, no such assumption is made that the teacher is competent to teach.  To become successful at teaching RPM is as difficult as it is rewarding.  This is reflected in the scarcity of qualified RPM providers.  The handful of HALO-recommended providers have undergone rigorous years-long training and apprenticeships to acquire skills that enable them to work with students of all abilities. For newcomers to RPM, it can seem daunting to navigate the road to unlock your child's true abilities and intellect.  It can take weeks, months, and even years to achieve open communication.  So for those of us who are new to RPM, watching a skilled practitioner connect with a child can be a truly extraordinary experience, and extremely frustrating when we are slow to achieve similar success at home. This brings me to a fundamentally wrong-headed assumption that fuels a lot of unnecessary controversy regarding the validity of RPM as a teaching and communication method: 
 
If an autistic student demonstrates proficiency at RPM with her teacher, she should be able to do it with anyone, right?  
 
I hope it is clear by now why this is patently false.  Even with my neurotypical sensory integration and motor ability, dancing with an unfamiliar partner requires adjusting to his alternate prompts, disrupting the motor feedback pathways I rely on to follow his lead. This triggers anxiety, accompanied by loss of coordination and many apologies for stepping on feet.  For both leader and learner, it takes practice with many different partners to seamlessly generalize skills to a novel partner.  While the challenge of generalizing skills may be obvious in the context of ballroom dancing, a bewildering majority of trained autism therapists and professionals cannot wrap their head around the idea that a learned skill may not easily generalize from one therapist or environment to another.  For those of you who eagerly await validation of RPM as a research-based method, please keep in mind that current testing paradigms often ignore this very real challenge to autistic learners. An inappropriate testing environment prevents the autistic student from revealing her true ability and aptitude. In contrast, when special education pioneers begin to acknowledge correlations between performance, anxiety, and familiarity with the therapist and environment, this will surely lead to better and more creative testing paradigms that will establish RPM as a valid teaching method and will not only help advance the field of special education, but of education in general.

NOTE: The author is a research faculty Ph.D. in neuro-opthalmology who studies diseases of the visual system.

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Rutgers Sensory and Motion Studies Show Promise fo

http://news.rutgers.edu/news/rutgers-sensory-and-motion-studies-show-promise-increasing-autonomy-children-autism/20130717#.V255LPmLSpD


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Philp

http://themighty.com/2015/01/someone-asked-my-son-with-autism-why-eye-contact-is-hard-this-was-his-answer/


Someone Asked My Son With Autism Why Eye Contact Is Hard. This Was His Answer.

I am letting you know about eye contact. My eyes see very well. Most people seem to need to have to look long and hard to make sense of a picture. I can take in a whole picture at a glance. Each day I see too many little petty details. I look away to not get overwhelmed by a lot of little bits of information. I watch things that a teacher or person I listen to tells me to watch. This helps me concentrate on what I should be focusing on. I can search for a teacher’s voice to try to focus on. I am academically learning best when I sit side-by-side with a teacher. A seat on the side keeps me focused on your voice and not on visual distractions. I am assessing many sounds too. I have to erase some stimuli to access my answers to people’s questions and meet their demands. That is why I don’t make eye contact. I am always listening. I listen a lot to voices. I so love when people talk to me and are not talking like I am not there. I am active because I am unable to feel my body well. People think I am being rude but I can’t help it. I need to move to feel my body, but sitting down at least helps me not walk away from you. Please peacefully talk to your nephew. Let him know you understand. I am sad when people think I don’t like them. I love people.

Love,

Philip


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Nicolas , 16 ans

Nicolas fait son devoir sur la guerre d'Algérie ( Première) .
Il utilise le logiciel de prédiction et synthèse vocale word Q . 
Nicolas est non verbal et a toujours été scolarisé ( présentiel + CNED)

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GILDAS

http://metropole.rennes.fr/actualites/education-vie-sociale-sante/sante/la-maison-de-gildas/


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Philip's blog

http://faithhopeloveautism.blogspot.fr/2015/04/world-autism-awareness-day-2015.html

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Focusing on autism-positive approaches

http://karlamclaren.com/focusing-on-autism-positive-approaches-to-stave-off-despair/


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CHRIS

Thanks Sue ! For RPM to be used and let us presume competences for all the silent fighters !

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ETHAN


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Ces combattants silencieux

Silent fighters :

 

Depuis un certains nombres d’années des autistes non verbaux utilisent l’écrit pour communiquer , pour témoigner et  diffuser leurs écrits (blog , vidéo,facebook)

Ce sont en général les parents qui  ont pu aller découvrir leurs capacités ignorées . Presume competences : c’est-à-dire ne pas s’arrêter qu’au comportement. Ces parcours sont très poignants à suivre et une communauté de plus en plus large partage ses témoignages. Ce sont des expériences très enrichissantes et motivantes. 

http://emmashopebook.com/

 

http://daysixtyseven.blogspot.fr/

 

http://idoinautismland.blogspot.fr/

 

Le locked-in syndrome autistique est une horreur à vivre puisque dans ce cas , personne ne sait que quelqu’un est enfermé . On ne voit que du retard mental. Les autistes non verbaux qui peuvent témoigner de cet enfer ne sont pas vraiment pris au sérieux.

Les recherches ne font que commencer .  Ces autistes non verbaux qui représentent presque la moitié de la population autiste sont très peu abordés par la recherche. Ils présentent des troubles du comportement, des stéréotypies, n’oralisent pas ou très peu. En avril 2012 le National Institute of Health s’est penché sur la problématique de cette population. Ceci afin de la caractériser et de préciser les prises en charge les plus adaptées. Ce qui est ressorti des discussions est qu’il s’agit d’une population très variable, il est très difficile de leur faire passer des tests. « We also need studies designed to elucidate the underlying mechanisms that explain why some children do not acquire spoken language by school-age , in spite of exposure to evidence-based interventions. » .En effet , dans la plupart des pays autres que la France des méthodes évaluées scientifiquement qui peuvent aider certains autistes, semblent sans effet sur ces autistes non verbaux.

Des recherches récentes et des témoignages de plus en  plus fréquents tendent pourtant à montrer que ces individus ont des potentiels qui leur permettraient  d’accéder à une scolarisation, certes adaptée, mais réelle.

Récemment , l’IMFAR 2010/2011 (International Meeting for Autism Research) s’est consacré aux autistes non verbaux et à interroger leurs potentiel. Autism Speaks , une des plus grande association américaine , a encouragé de nombreux laboratoires à enfin étudier cette population d’autistes oubliée par la recherche . Notamment, le laboratoire de John Connolly (universitée McMaster, Canada) a utilisé les mêmes outils d’analyse (tels que l’EEG ) qu’il utilise pour évaluer l’état de conscience et les capacités langagières des patients locked-in-syndrome , sur des enfants autistes non verbaux . Les premiers résultats sont très encourageant et montrent des capacités d’analyse du langage (d’ordre morpho-syntaxiques entre autres) inattendues. (voir l’article ci-dessous «  Non-verbal Autism Research Highlighted at IMFAR » et the "Forgotten Half of Autism")

L’équipe de Laurent Mottron a évalué avec des tests plus adaptés aux profils d’autistes non verbaux des enfants de classes spécialisées. Un nombre important montra des capacités qui remettaient en cause leur orientation scolaire. (Courchesne, 2012).

De nombreux témoignages accompagnés de vidéo montrent que la déficience intellectuelle n’est sans doute pas si présente dans l’autisme (Mottron, 2012) et le fait de ne pas oraliser ne doit surtout pas être un facteur d’exclusion scolaire.

« Même si on crie haut et fort que l’autisme et la déficience intellectuelle sont distincts, les interventions en autisme sont encore dans l’ombre de la déficience intellectuelle. »(Brigitte Harrisson , p.36)

 

 

Ce que disent ces « silent fighters » ( Tito, Ido ,Drew, Jeremy, Carly, Naoki ,…) c’est qu’ils sont là .Bien présent. Avec un corps qui fait n’en fait qu’à sa tête. Avant de pouvoir l’exprimer, cette fine compréhension de leur environnement si ignorée, c’est le cauchemar. Leurs manifestations autistiques ne sont appréhendées comme identité d’autiste, comme adaptations mais comme signes de débilité. On ne les considère pas comme des individus capables de comprendre : « low-fonctionning/low expectations ».

 

Depuis un certains nombre d’années se développent des mouvements militant d’autistes voulant parler en leur noms ( voir l’exemple du congrès annuel de l’AUTREAT) . Ces « activistes » utilisent la toile et de nombreux blog affirment leur détermination à penser et faire fléchir sur les représentation de l’autisme ( parmi les plus célèbres , ceux de Michelle Dawson et Amanda Baggs  ou Estée Klar , maman chanceuse d’un Adam chanceux ).

Des autistes non verbaux commencent aussi à juger leur prise en charge. Le remarquable témoignage de Ido Kedar (2012) est bouleversant et nous fait comprendre énormément de choses sur les comportements, les réactions de ces individus.

Ido évoque ses problèmes moteurs, son incapacité à contrôler ses gestes, qui, aux yeux de ses thérapeutes, le font passer pour un déficient mental. Sa frustation à ne pouvoir communiquer réellement ses pensées (montrer qu’il comprend tout ce qu’on dit de lui) provoque des troubles du comportement qui ne font que renforcer l’avis des thérapeutes sur sa déficience apparente.

Les approches qui ont permis à de nombreux autistes non verbaux de  prouver leurs capacités intellectuelles détournent les obstacles issus de  leurs troubles moteurs et sensoriels.

Voir le lien plus bas : the sensorimotor perspective on autism

C'est une vrai révolution copernicienne , un changement radical de point de vue : essayer de réaliser que ce qui parait de nature comportementale ( gestes, attitudes, etc...) revient à des troubles moteurs et sensoriels. Et donc changer d'attitude envers ces silent fighters.

 


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GADI and IDO

http://www.jerusalemonline.com/culture-and-lifestyle/wondrous-achievements-of-israeli-suffering-from-autism-756

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JUST BELIEVE by Christine and Oliver Stephan

  AUTCOM NEWSLETTER                                               TheCommunicator                                        Late Fall 2013 
From Christine’s point of view I don’t like to advise people. I don’t like being in a position of telling others what to do. But I am a person of strong opinions. And just this once I’d like to tell you to do something. And by “you.” I especially mean those who love and support non- speaking autistic people of all ages. I want you to promise that when you find yourself explaining to someone that you have no idea what your loved one knows or understands, that you will also quickly add a sentence to say that you believe he understands everything and just hasn’t yet found a way to let the world know. When you observe your loved one behaving in a way that you don’t understand and he can’t explain, promise me that you will believe that he is trying the best he can and that he is as frustrated - probably more so - than you. When you see that she can’t master skills that come easily to others and that dark fear that it will always be this hard creeps into your heart, promise me to believe in her ability to learn and achieve. Please, just believe.
It’s the most important thing you will ever do for the person you love!
Because if you don’t believe, that’s just one more hurdle for this person to overcome. And believe me: they have it hard enough already. Only 18 months ago I was working on 1:1 correspondence with my son, who was nine. When I asked him to hand me 4 plates each night before dinner to set the table, he would hand me plate after plate, counting each as he went: 1....2....3.....4....5....6 and he would have kept going if I didn’t stop him along the way. Each night it was the same. I assumed, wrongly, that Oliver didn’t fully understand the 1:1 concept. Now that Oliver can communicate, I see that his difficulty was in another kind of processing. Maybe he couldn’t simultaneously process the counting and the physical actions. Maybe he just felt too much pressure to get it right when his body and brain weren’t working together. I now understand that his true challenges were masked by how hard he works to compensate for a body that doesn’t cooperate.
Just Believe Christine K. Stephan and Oliver Stephan http://www.daysixtyseven.blogspot.com And even though my boy and I are pretty much inseparable, and I like to think I’m pretty observant, I had no idea that he had so much trouble controlling his body. I mean, if you’re ever lucky enough to see this boy on his bike, you’ll know why. On two wheels he is grace personified. It never occurred to me to load his iPad with math apps geared towards fractions, decimals and algebra, but now that I see how easily he navigates them, I regret that they weren’t there to explore alongside the colorful counting apps that I thought he needed. I regret that I didn’t give him the opportunities to display an interest in things that I assumed he wouldn’t understand. I regret that my assumptions limited him when they should have been expanding his world. I regret. So now promise me that you won’t also feel this deep regret at some point in the future. Go now to that person you love and tell him that you believe. Even if this person you love can’t eat with a utensil. Even if she hasn’t mastered toileting. Even if she can’t manage the simplest communication system and even Yes and No are hard. Even if he never seems to be paying attention and can’t sit still for a second. Tell him that you believe. And keep saying it until you are both convinced. And on the days when it’s hard, say it even louder. Fill this person’s life richly with thoughts and ideas. Read aloud what interests you and share your thoughts and opinions as though your words are a lifeline  because they very well may be what is feeding his spirit. Play audio books before bed, choose classics that appeal to people of any age. Listen to the news together, NPR, TED talks, documentaries, and then talk about it at dinner time, even if yours is the only voice. Both of your lives will become richer. Only 18 months ago I wasn’t sure my son knew his last name or understood, exactly, the concept of birthdays or anything abstract, really. Two months ago he wrote these words:  “I couldn’t tell people that I understood everything. People treated me like I just didn’t think but that is all I did.” So promise me that you will believe this also to be true of the person you love. Sustain your belief
Autcom NL Late Fall.indd   2 12/31/13   2:18:02 PM
Late Fall 2013                                      The Communicator                                                   Page 3
even on the hardest days - because yes, it seems impossibly hard some days - and say it loudly for everyone to hear. Because by making this promise the only thing you risk losing is regret. 
From Oliver’s point of view
Today I went to school and took my first real test ever. I did very well on the test. I thought it was easier than I expected. Everyone was surprised by the words I knew. The people who were testing me couldn’t even pronounce some of the words but I still got them right. If it weren’t for my mom who was there with me to help me with her hand on my shoulder I would not have been able to show them
how much I know. That’s the way it has been my entire life. People only saw the things that make me different when I tried to show them what I know. I taught myself to read when I was only two years old by watching the words as my mom read. I would have liked to read different books but I didn’t know how to say so.  I really sound like I am complaining but I wanted to learn things and we only read childish books. I learned by paying attention to everything around me. I was always listening even when it didn’t look like it. Other people like me who can’t speak are everywhere.  Please don’t give up on them because they need you to believe in their intelligence. Without your help they will feel lost. Together you are stronger.

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OLIVER

Encore un autre ...

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TITO 's story


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Apps pour faciliter la frappe

https://itunes.apple.com/be/app/the-fat-finger/id511517444?l=fr&mt=8&ls=1

 

https://itunes.apple.com/be/app/iwordq-eufr/id585707455?l=fr&mt=8&ls=1

 

Merci à Christelle !


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autism: the micro-mouvement perspective

http://www.frontiersin.org/Journal/DownloadFile.ashx?pdf=1&FileId=72897&articleId=52718&Version=1&ContentTypeId=21&FileName=fnint-07-00032.pdf

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Infantilizing Autism

http://dsq-sds.org/article/view/1675/1596

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the sensorimotor perspective on autism

http://www.frontiersin.org/Integrative_Neuroscience/10.3389/fnint.2013.00006/full

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Autistic ´s brain

http://www.pbs.org/kcet/closertotruth/transcripts/303_autisticbrain.pdf

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Carly is going to the University of Toronto !

So guess the cat is out of the bag! I CARLY FLEISCHMANN someone who is nonverbal has been accepted to university for the fall. I would love to see the look on my kindergarten teachers face. She thought I didnt like her because I didn't look at her. The moral of this story is that we are all capable. 

"This fall, Carly is going to the University of Toronto, having enrolled in Victoria College’s Bachelor of Arts program which has a strong literary tradition. She wants to be a journalist." Read full story bellow!

The TORONTO STAR 
Carly Fleischmann: Video about autistic Toronto teen wins international acclaim
A Toronto-made video which depicts the struggles autistic people have to cope with in daily life has won a Cannes Silver Lion award.
By: Valerie Hauch News reporter, Published on Sat Jun 22 2013

It’s pretty simple, getting a cup of coffee in a café: You choose, you ask, you drink.
Unless you’re an autistic person, like Carly Fleischmann, an 18-year-old Toronto student who is non-verbal.
Her world is filled with all sorts of audio input competing for her attention, along with sights and smells — filtering all this and making her wishes known to even family members can be a herculean task. So getting a cup of coffee is not always so simple.
To give a glimpse into Carly’s everyday world, and to show how something so simple for most of us can be so difficult for someone with autism, Carly’s father, Arthur Fleischmann and his Toronto ad company, John St., produced a video, in collaboration and with direct input from Carly — who communicates with her iPad and other technological devices — called Carly’s Café, and posted it on YouTube as well as the website,www.carlyscafe.com. The latter includes some footage from family home movies and starts with a poignant quote from Carly: “Autism has locked me inside a body I cannot control.”
The two-minute 19-second video just won the Silver Lion award in the cyber, public service category at Cannes Lions International Festival of Creativity, held in France. The annual event showcases and judges creativity in communications with 34,000 entrants this year from around the world submitting to various categories.
Last fall, Carly’s Café was used by the president of Poland to open his presentation at the UN Convention on the Rights of People with Disabilities.
Filmed in one day on a low budget of $7,500 at a downtown coffee shop, it features actors playing a father-type figure, a sister and someone with autism. Carly herself appears in the video. There’s also an interactive aspect.
“Through multiple embedded ‘zones’ people can move their mouse around the screen and feel the visual and auditory distraction that most of us could easily block out but which becomes an engulfing hindrance for people like Carly,” says Arthur Fleischmann.
In Carly’s case, when all this distraction is coupled with a lack of speech, “the frustration skyrockets,” he says.
On her Facebook page, where she has 97,000 followers, and where she posts regularly with her iPad, Carly wrote: “Oh my Gosh! Silver Silver Silver. TAKE THAT Ashton Kutcher!”
The video ties in with a 2012 book, Carly’s Voice, Breaking Through Autism, written by Arthur, with a chapter by Carly. Arthur was quite taken by Carly writing about how someone with autism can struggle with something as simple as having a conversation in a coffee shop.
It’s been a long road of discovery and achievement for Carly, who was diagnosed with autism at the age of 2. At the time, no one realized the great potential locked inside the child who could not speak.
But Carly, who had intensive behavioural and communication therapy throughout her childhood, surprised everyone by typing some words at age 10, to indicate a problem she was having at the time. That incredible breakthrough was just the start. She would go on to communicate eloquently with various technological devices, becoming adept at Facebook, Twitter, appearing on the Ellen DeGeneres Show, Larry King Live and others, to communicate about autism.
This fall, Carly is going to the University of Toronto, having enrolled in Victoria College’s Bachelor of Arts program which has a strong literary tradition. She wants to be a journalist. Carly’s mother, Tammy Starr, says U of T has gone out of its way to partner with us “to make this work.”
University will be yet another milestone for Carly who has long surpassed the low expectations doctors had long ago given to her parents — that she would never develop intellectually beyond the mental age of a small child.

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John Connolly - Listening to the Brain's Voice

http://www.youtube.com/watch?v=C_y6WANTdCc

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Autistic Teen Uses Tech to Break Silence

http://www.nbclosangeles.com/news/local/Autistic-Teen-Writes-Book-on-an-iPad--204775591.html#comments

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MITCH


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SOMA MUKHOPADHYAY

Harnessing repetitive behaviours to engage attention and learning in a novel therapy for autism: an exploratory analysis

 

http://www.halo-soma.org/files/news28_fpsyg_03_00012.pdf


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Noncompliance may be communicating boredom

 

This is from the Chantal Sicile-Kira ‘s book «Autism Life Skills » . It happens to many non verbal autistic children. Others testimonies can be found. For exemple, Ido in “Ido in autism land” , a powerful and very harrowing book , explains how hard it is to be so under- estimated. Non verbal autistic kids deserve better life and to be educated .

But today they are all seen as dumb and retarded children.

Let’s see an article from the journal of autism and developmental disorders called “An examination of the effects of a classroom activity schedule on levels of self-injury and engagement for a child with severe autism”:

_________

 J Autism Dev Disord. 2005 Jun;35(3):305-11.

An examination of the effects of a classroom activity schedule on levels of self-injury and engagement for a child with severe autism.

O'Reilly M, Sigafoos J, Lancioni G, Edrisinha C, Andrews A.

Source

Department of Special Education, The University of Texas at Austin, 1 University Station D5300, Austin, TX 78712 , USA. markoreilly@mail.utexas.edu

Abstract

We examined the effects of an individualized schedule on levels of engagement and self-injury for a student with severe autism. We first conducted a series of functional analyses to identify contexts in which self-injury occurred in his classroom. Results of the functional analyses suggested that self-injury was associated with academic demands. Self-injury rarely occurred during the play and no interaction conditions (i.e., when the teacher was present but did not attend to him) of the functional analysis. Furthermore, when the functional analysis conditions were organized according to a specific schedule (no interaction-play-demand) self-injury did not occur. This schedule of activities was then evaluated within the context of his regular curriculum and produced substantial reductions in self-injury and increases in engagement. Positive results maintained for up to five months following the assessment. These findings seem to indicate that functional analysis methodologies might provide helpful information when developing individualized schedules for students who may not have the skills to comprehend and follow a schedule.

__________________

 

In the end of the article you can read “The introduction of a schedule is only one of several possible interventions that could have been conducted with this student .For exemple , we could have reduced the difficulty or number of tasks during academic sessions. We might also have taught the child a communication strategy that he could used to terminate activities.”

 

The possibility that the tasks are too easy is never thought .

Self-injury could be a way for the child to signify how much he is under-estimated.

“They holocausted Nico” Nicolas J. wrote, talking about the way he feels to be under-estimated. lebulletindeniko.blogspot.com/

 

 

 

 

 

 


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LA BONNE SURPRISE !

 

Évaluation clinique de l’intelligence chez des enfants autistes non verbaux: la bonne surprise

Crée le 17 décembre 2011

De récentes études démontrent que certains tests d’intelligence (ex : Wechsler) sous-estimeraient le potentiel intellectuel des personnes autistes, de façon encore plus marquée pour les autistes non verbaux. En effet, la plupart des enfants autistes non verbaux ne sont tout simplement pas évaluables avec le Wechsler et sont donc souvent considérés d’emblée comme ayant un retard intellectuel. La présente étude vise donc à évaluer le potentiel intellectuel de ces enfants « non évaluables ». Dix-neuf enfants autistes non verbaux de très bas niveau de fonctionnement apparent, âgés de 6 à 12 ans, ont été recrutés dans une école spécialisée pour enfants autistes avec déficience intellectuelle. Ils ont été évalués à l’aide d’un WISC-IV et de trois autres tests plus adaptés au style cognitif des personnes autistes : les Matrices progressives de Raven couleur (RCPM) version encastrable, le Children Embedded Figures Test (CEFT) et un test de recherche visuelle (VS). Un groupe contrôle de 25 enfants typiques appariés en âge et niveau socio-économique a également été évalué. Aucun des enfants autistes n’a pu compléter de manière valide aucun sous-test du WISC-IV. Par contre, 16 des 19 enfants autistes ont compris et complété le CEFT et le VS et 15 ont pu compléter le RCPM. Le groupe autiste a démontré le même patron de réponse que le groupe contrôle dans les différentes conditions du CEFT et du VS, malgré des temps de réponse généralement plus lents. Également, 8 des 15 enfants autistes ayant complété le RCPM ont obtenu des scores se situant dans l’intelligence normale, ce qui correspond à un peu plus de 40% de l’échantillon total (8/19). Ces résultats démontrent que les enfants autistes non verbaux peuvent être évalués avec certains tests qui ne nécessitent pas ou peu de consignes verbales. Certains de ces enfants peuvent en fait présenter des capacités intellectuelles dans la normale, ce qui a d’importantes implications pour les approches pédagogiques mises en place.

Auteurs : COURCHESNE, Valérie 1; MEILLEUR, Andrée-Anne S. 1; SOULIÈRES, Isabelle 2;
Présentateurs : ISABELLE, Soulières; COURCHESNE, Valérie
Communications orales liées :
Mots clés : autisme, perception, intelligence, déficience intellectuelle, recherche visuelle, raisonnement
Type de communication : symposium
Axe de communication : fondamental / neuropsychologie
Courriel : isoulieres@gmail.com

1Université de Montréal; 2Université du Québec à Montréal;


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MORTON ANN GERNSBACHER

http://www.gernsbacherlab.org/research/autism-research/

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IDO

http://idoinautismland.blogspot.fr/

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DREW MORTON GOLDSMITH


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Henry wants to go to school


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CARLY


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BABOUILLEC

Babouillec, autiste sans paroles et auteur de théâtre
Hélène Nicolas, alias Babouillec, et Arnaud Stéphan, metteur en scène. Philippe Renault.
Hélène Nicolas, alias Babouillec, et Arnaud Stéphan, metteur en scène.© Philippe Renault.
Elle est restée murée dans le silence pendant vingt ans. Hélène Nicolas, 25 ans, a écrit un texte pour un jeune metteur en scène rennais, Arnaud Stephan. La pièce À nos étoiles est présentée au festival Mettre en scène de Rennes et au théâtre de Cornouaille à Quimper.

Pendant vingt ans, Hélène Nicolas n’a jamais communiqué, ni avec ses proches, ni avec personne. Autiste, privée de parole, la jeune femme était enfermée dans une bulle. Jusqu’à ce jour où sa mère s’est aperçue qu’Hélène savait lire et écrire.

Jamais scolarisée, c’est par ses propres moyens qu’elle a appris. Mais comme elle ne peut tenir un crayon, ni utiliser un clavier, elle communique avec des lettres écrites en majuscule sur des petits morceaux de carton, rangés dans une boîte en bois, qu’elle dispose un à un sur une feuille blanche.

Contrairement à beaucoup, qui aiment s’isoler pour écrire, Hélène a besoin d’être entourée, ou de son art-thérapeute, ou de son orthophoniste, mais surtout de sa mère dont elle recherche les encouragements, tête contre tête. Grâce à leur complicité de toujours, sa maman l’aide à retranscrire patiemment sur papier ses écrits éphémères.

Quand on demande à Hélène, aujourd’hui âgée de 25 ans, ce qu’elle ressent : « Tu questionnes ma mémoire murée, écrit-elle. Je vis votre sens du monde comme un énorme gouffre indéchiffrable. »

Look adolescent, un brin rebelle, la jeune femme, fan de Bertrand Cantat,  a écrit un texte qui a reçu les encouragements du Centre national du théâtre. Raison et acte dans la douleur du silence est compact comme un roman, signé Babouillec, autiste sans parole, un nom qu’Hélène s’est choisi à partir du diminutif Babouille, que lui avaient donné ses parents quand elle était petite et qu’elle peignait avec gourmandise.

Ce texte puissant, émouvant, n’est pas né par hasard mais d’une rencontre qui résonne comme un conte de fée moderne. « En 2007, j’ai croisé Arno, humainement ouvert à mon décalage spatio-temporel », écrit Babouillec, s’appliquant à sortir et poser une à une sur la table les précieuses lettres qui la relient aux autres.

Arno, c’est Arnaud Stephan, comédien, metteur en scène rennais. Ils se croisent par hasard en 2007 Au Bout du plongeoir, plateforme artistique où les artistes peuvent tester leurs créations de  manière informelle. Ce jour-là, le metteur en scène y mène une expérience théâtrale autour de la pièce  Agatha de Marguerite Duras. Hélène assiste pour la première fois à une pièce de théâtre, dans ce contexte atypique. Comme elle est une spectatrice vivante, active, sa mère n’avait jamais osé l’emmener dans une salle de spectacle classique.

À la sortie, Hélène écrit un texte de cinq lignes qu’elle montre au metteur en scène. « J’étais scotché, confie Arnaud Stéphan. J’ai voulu savoir si elle pouvait aller plus loin. »

« La pire place, rester dans le silence »

Ils s’écrivent, échangent des livres, puis ensemble, vont voir des pièces, jusqu’au jour où Hélène Nicolas demande à Arnaud Stéphan d’être son porte-parole. Elle veut lui rédiger un texte : « Tu le jouerais pour  nous, habitants des espaces oubliés, affamés d’esthétique et de rire », lui écrit-elle. En trois mois, naît Raison et acte dans la douleur du silence. « Un très beau cadeau. Ce n’est pas tous les jours qu’un auteur offre un texte comme celui-ci à un interprète, explique Arnaud Stéphan, séduit par la vision du monde de Babouillec, lucide, ludique et poétique. J’ai aussitôt eu envie de le faire entendre. »

Dans ces trente feuillets, la jeune auteure joue avec les sonorités, évoque l’enfermement : « Les minorités sont comme des étoiles dans le ciel, elles font briller le noir. On nous donne la pire place, rester dans le silence. » C’est un monologue, un poème dramatique, incisif, révolté. Il y est question d’autisme, de silence et de douleur. « L’autisme n’est pas une jungle, mais un désert édulcoré, écrit Babouillec. Je le sillonne chaque jour pour trouver la sortie. Aride est mon parcours. »

Arnaud Stéphan, devenu son allié et complice, y lit aussi « la condition de l’artiste dans la société d’aujourd’hui. » Pour lui, Babouillec est « un auteur, non une autiste qui écrit. Ce qui m’intéresse c’est son écriture, jeune, mais qui mûrit à vue d’oeil ». Babouillec est aujourd’hui auteur associé à la compagnie Indiscipline créée par Arnaud Stefan. À sa demande, un autre texte est en chantier, écrit comme un texte de théâtre, un véritable défi, un dialogue entre trois personnages. Babouillec, qui reste une énigme, explique : « J’ai reçu trop d’informations à la naissance, j’ai fermé toutes les portes ». Elle  va une nouvelle fois faire partager son regard sur le monde, acéré et humaniste.

 

Le Festival Mettre en Scène se déroule depuis hier jusqu’au 19 novembre en Bretagne. Cette manifestation réunit les meilleurs chorégraphes et metteurs en scène du moment à l’image de Philippe Decouflé ou encore Rodrigo Garcia. La pièce de théâtre qui fait actuellement polémique, Sur le concept du visage du fils de Dieu, de l’Italien Romeo Castellucci, est également au programme à partir du 10 novembre. La création de Babouillec sera présentée du 8 au 12 novembre, à Saint-Jacques-de-La-Lande (Ille-et-Vilaine), puis les 16 et 17 novembre, au Théâtre de Cornouaille à Quimper. Informations : t-n-b.fr


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Sharisa Kochmeister

As a child Sharisa Kochmeister had no way of communicating and wasregarded as profoundly mentally retarded. Her disabilities include autism andcerebral palsy. It did not seem likely that she would ever tell the world whatshe saw or how she felt. Today, however, she speaks eloquently on behalf ofpeople who have a voice but cannot be heard. Many awards have come herway, but she says her greatest satisfaction comes from knowing she hashelped others be included and be more independent.Sharisa was placed in special schools until the age of fifteen, in classes withstudents who had the most severe physical and mental disabilities. In herown words, "I had no real friends, no real sense of identity, and no real life."When she was a teenager she learned to type with assistance. This enabledher to reach out to others and communicate. She began using facilitatedcommunication, needing support first at the hand, then the wrist, the elbow,the shoulder, and eventually typing completely on her own.Sharisa KochmeisterSharisa entered high school when she was sixteen and finished grades 9-12 in only three years. She graduatedwith honors, and went to the local community college as an honors student, before entering the University ofDenver. Currently, she is a junior at DU and loves it there. "I feel totally accepted and welcome," she says.Sharisa is studying cognitive neuroscience and is working on a minor in English.She now types independently on computer keyboards, laptops, and such augmentative devices as the"Lightwriter" and the "Pathfinder." She has written poems, essays, and speeches, as well as published aninterview with a Russian exchange student and teacher. Sharisa has authored a fairy-tale called, "The WickedWitch Autisma," which she hopes will explain autism to young children.Music is an essential part of her life. She has written and co-written songs that have been performed in concertby the Hudson Valley Philharmonic Orchestra and at the Chatauqua Institute. She is also actively involved as ahuman rights advocate. She believes in setting a personal example for others and in helping individuals withdisabilities advocate for themselves.The most important issue for Sharisa is getting her bachelor's degree. She also plans to continue her educationand get her Masters' and Doctoral degrees. She wants to work on systems change issues such as the refusal ofservices for people with developmental disabilities on grounds that their cognitive abilities may be too high to beconsidered developmentally disabled even though their adaptive and daily living skills are hamperedsignificantly.Sharisa advises families that have children with disabilities to do anything and everything they can for theirchildren and to ALWAYS treat them as people, not just people with disabilities. "Love them with all your heartbecause that's what children with and without disabilities need the most! She advises families whose childrenhave autism and do not have spoken language to try every way possible to find a means of communication forthem. "Do whatever it takes," she concludes. Sharisa speaks eloquently because she speaks from the heart, andshe expresses those values that all of us understand.Return to Self-AdvocatesHome Breaking News Calendar Publications Issues Conferences About Us Contact UsSelf-Advocate Sharisa Hockmeister 5/29/03 10:28 AMhttp://www.peakparent.org/pages/SASharisaKochmeister.html Page 1 of 1


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the "Forgotten Half of Autism"

A press briefing hosted by the Golden Hat Foundation in conjunction with the United Nations was held on World Autism Awareness Day in the Dag Hammarskjold Library Auditorium. The briefing focused on those with nonverbal autism, the "Forgotten Half of Autism." Statistics show that near 50% of individuals with autism have non-functional speech, this subset is rarely researched and often written off as intellectually disabled merely due to their low functioning motor skills including speech.

The speakers include: Mrs. Dorrit Moussaieff, First Lady of Iceland; Margret Bauman, M.D. Harvard Medical School; April Benasich, PhD, Rutgers University; John F. Connolly, PhD, McMasters University; Margret Ericsdottir, President and CEO of Golden Hat Foundation; and Portia Iversen, Advocate and Author.

The press briefing was presented by the UN Department of Public Information, the Permanent Mission of Iceland to the United Nations and the Golden Hat Foundation, as part of World Autism Awareness Day 2012.


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Non-verbal Autism Research Highlighted at IMFAR

Home > Science > Non-verbal Autism Research Highlighted at IMFAR
Non-verbal Autism Research Highlighted at IMFAR

By Leanne Chukoskie, Autism Speaks

In 2008, Autism Speaks kick-started research in the area of non-verbal autism through its High-Risk High-Impact initiative. This year at IMFAR, Autism Speaks-funded research was featured in the Invited Educational Symposium titled Characterizing Cognition in Non-verbal Individuals with Autism: Innovation, Assessment and Treatment.

Geraldine Dawson, Ph.D., Autism Speaks’ Chief Science Officer, chaired the session and set the stage for the audience to appreciate the importance of this particular topic. An estimated 30% of individuals living with autism are functionally non-verbal, yet very little research effort was directed toward helping this group communicate their wants and needs. The inability to communicate leads caregivers and clinicians to the presumption that the cognitive skills in these individuals were low because the tests typically used to assess cognitive skill require verbal or behavioral responses that this group of individuals does not readily produce.

The first speaker was April Benasich, Ph.D. of Rutgers University, who received an Autism Speaks grant for her research. Dr. Benasich presented data on innovative new studies on 3-7 year old non-verbal children with autism. Using tasks that were designed to assess children’s capacity to identify mismatches between sights and sounds. For example, a picture of a frog might be presented with the spoken word “frog” or “cow.”  The latter, obviously incorrect, pairing generates a spark of electrical activity in the brain called a mismatch negativity about 400 ms after the stimulus was presented. This sort of task can also be used to probe contextual understanding in non-verbal children by pairing, for example, the frog with “green” or “pink.”  Even greater complexity can be tested by presenting sentences with errors in syntax. When heard by children who understand language, these syntax errors generate the same kind of brain potential.

Dr. Benasich and her colleagues developed a training protocol to get the children comfortable with the application and wearing of the EEG net as well as exposing them to all of the concepts presented in the experiment. The results revealed some similarities and some differences in the processing of sensory stimuli in the non-verbal children and this is not unexpected as they continue analyzing these data and also new data on older non-verbal children.

However the real power of using EEG techniques for assessing cognitive capacity is that it can tell us for an individual what we cannot get from standardized cognitive tests. Dr. Benasich presented results from individuals, some of whom were picking up the mismatches in the pictures and sounds, or sentence errors and some of whom did not.

This was the launching point for the next presentation from John Connolly, Ph.D., of Mc Master University. Dr. Connolly typically studies individuals who suffered traumatic brain injury and must be assessed to appropriately design rehabilitative therapy. He and his colleagues adapted a standard test for word comprehension called the Peabody Picture Vocabulary test (PPVT) into a tool that can be used by measuring brainwaves – no oral or manual response required. A grant from Autism Speaks allowed him to adapt his methods to work with non-verbal individuals with autism. By learning exactly what these non-responsive adolescents can and cannot understand, one can more appropriately design therapies to help them move to the next stage of learning.

Nicole Gage, Ph.D. of UC Irvine relayed her studies of both speech and sound processing in minimally-verbal children with autism using a different brain measurement tool called magnetoencephalography or MEG. One advantage of MEG for children is that nothing actually touches the child during the measurement. Although they must lie very still, there is no noise and the device resembles a fancy salon hair dryer. Using this technology, Dr. Gage and her colleagues are finding differences in very early in brain processing responses to tones and mature early in human development. These responses occur at the level of the auditory brainstem and may be at least partially responsible for the atypically responses measured to both tone and speech sounds observed by both Dr. Gage and other researchers at the later stages of brain processing in auditory cortex.

Lastly, but perhaps most importantly, Connie Kasari, Ph.D., of UCLA and the organizer of this special session presented her Autism Speaks-funded treatment research specially tailored for non-verbal children between the ages of 5 and 10 years old. Dr. Kasari uses structured play-based methods to build a scaffold and provide context for encouraging communication in these children. Her randomized controlled trial design encompasses treatment sites at UCLA, Vanderbilt, and Kennedy Krieger and involves the play based therapy especially designed for these children and also a treatment arm that includes an alternative and augmentative communication device. Dr. Kasari showed data from the group thus far – after three months of the six-month treatment trial. Not only are some individual children making incredible strides toward initiating functional communication, but overall 75% of the children in the study are responding to the therapy. Interestingly, looking back at the detailed assessments taken on the participating children upon their entry into the study no particular features distinguished the responders from the non-responders thus far.

These studies break new ground in reaching those with autism who cannot speak. However, the next steps will almost certainly be the most exciting. As more researchers and clinicians learn about these studies and are able to take advantage of the results presented, we will be better able to understand and assist individuals who are now non-verbal. These sentiments were perhaps captured best in the enthusiastic response the speakers received from the loved ones of those affected.


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THE GOLDEN HAT FOUNDATION

http://www.goldenhatfoundation.org/resources/video-links

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L'autisme : l'intelligence autrement

Autistes: l'intelligence autrement Une équipe de l'Université de Montréal démontre que les méthodes couramment employées pour évaluer l'intelligence des autistes sont inadéquates
Pauline Gravel   20 février 2006  Science et technologie
Michelle Dawson, une chercheuse autiste, et le Dr Laurent Mottron, professeur au département de psychiatrie de l’Université de Montréal.
Photo : Annik MH De Carufel
Michelle Dawson, une chercheuse autiste, et le Dr Laurent Mottron, professeur au département de psychiatrie de l’Université de Montréal.
Tout est faux. La plupart des scientifiques sont partiaux. Les mesures qu'ils ont effectuées jusqu'à maintenant ne sont pas représentatives et contribuent à entretenir le mythe que les autistes sont en majorité des déficients intellectuels, ou exceptionnellement des «idiots» savants.

L'équipe du Dr Laurent Mottron, professeur au département de psychiatrie de l'Université de Montréal, a jeté un pavé dans la mare de ce consensus trop longtemps entretenu, hier dans le cadre du congrès de l'American Association for the Advancement of Science (AAAS) à Saint-Louis au Missouri. En collaboration avec Michelle Dawson, une chercheuse autiste, le Dr Mottron a démontré que les méthodes couramment employées pour évaluer l'intelligence des autistes étaient inadéquates et ne permettaient pas de révéler le réel niveau d'intelligence de ces personnes parfois muettes et dont le comportement bizarre à certains égards a souvent conduit à une sous-estimation de leurs capacités intellectuelles.

Pour apprécier adéquatement l'intelligence des autistes, le Dr Mottron souligne aussi le fait que celle-ci est souvent évaluée à l'âge de 4 ou 5 ans, soit bien avant qu'un enfant autiste atteigne son plein potentiel intellectuel, lequel n'apparaît souvent que vers six ans. Or, cette estimation précoce entraînerait la plupart du temps une sous-évaluation de leur niveau d'intelligence. «Un tel jugement erroné aura des conséquences désastreuses sur l'enfant qui sera diagnostiqué autiste de bas niveau, car on ne lui offrira pas le matériel et les occasions dont il aurait besoin pour apprendre et se développer», dit Michelle Dawson, qui souligne le fait qu'il y a eu un temps dans sa vie où elle présentait le tableau d'un autiste de bas niveau.

Vision négative

Dans la plupart des centres de recherche et des cliniques du monde, le quotient intellectuel (QI) des autistes est mesuré à l'aide des échelles Wechsler qui sont constituées de 11 sous-tests censés composer un échantillon représentatif des différentes caractéristiques de la cognition humaine. Les autistes maîtrisant le langage oral sont plutôt médiocres aux sous-tests verbaux, en particulier ceux dits de compréhension, mais ils excellent littéralement aux tests de dessins avec blocs contrairement aux non-autistes qui présentent invariablement le même niveau moyen à cette dernière tâche. «Les autistes ont clairement un pic d'habileté à ce sous-test particulier qui consiste à reproduire un dessin géométrique avec des faces de cubes», souligne le Dr Mottron, qui dirige la clinique spécialisée de l'autisme à l'Hôpital Rivière-des-Prairies. «Or depuis, une trentaine d'années, une hypothèse dominante dans le monde scientifique disait que si les autistes étaient bons pour faire des dessins avec blocs, c'était forcément parce qu'ils avaient un déficit du traitement des formes globales. Partant d'un dogme absolument non contesté que l'autisme est une maladie, les scientifiques cherchent ce qui ne marche pas chez les autistes. Ils cherchent des déficits qu'ils rêvent d'apparier avec des anomalies génétiques ou cérébrales.»

«Il n'y avait pourtant aucune évidence que ce pic d'habileté pour les dessins avec blocs était causé par une faiblesse, ce n'était qu'une présomption, et nous l'avons démontré dans une précédente publication», ajoute la cosignataire de l'article présenté à l'AAAS, Michelle Dawson, qui déplore avec force cette vision trop souvent négative de l'autisme.

Un cerveau différent

Partant de l'idée que les autistes, avec un cerveau différent de celui de la majorité d'entre nous — que Michelle Dawson désigne comme des «typiques» —, pouvaient réussir certaines tâches beaucoup mieux que nous, les chercheurs de l'Université de Montréal se sont appliqués à rechercher ces forces que détiennent la plupart des autistes. Car en effet, presque tous les autistes présentent des pics d'habileté: certains sont des musiciens prodiges, d'autres sont dotés d'une orientation spatiale exceptionnelle, une certaine proportion sont des calculateurs de calendrier, ils arrivent à trouver le nom du jour correspondant à une date donnée dans le futur juste en regardant un calendrier de l'année en cours, une prouesse qui nécessite un algorithme très puissant.

Les chercheurs ont ainsi découvert que ces mêmes autistes verbaux réussissaient beaucoup mieux (ils atteignaient 30 centiles de plus qu'au Wechsler) au test des matrices progressives de Raven, un test de résolution de problèmes impliquant un haut niveau de raisonnement abstrait, mais qui ne comporte aucune instruction verbale. Qui plus est, certains autistes muets qui avaient été catégorisés comme déficients moyens en raison de leur très faible performance sur les échelles de Wechsler atteignaient des scores exceptionnels (parfois le 95e centile) au test de Raven, alors que certaines épreuves du test sollicitent la logique du langage pour être résolues chez les sujets typiques ou non-autistes. «Cela prouve donc que les autistes ne fonctionnent pas comme nous, qu'ils ne résolvent pas les problèmes par la même trajectoire que nous», affirme Laurent Mottron. Et pourtant, les non-autistes obtiennent des résultats équivalents aux deux tests (Wechsler et Raven).

John Raven a construit ce test pour mesurer l'habileté d'apprentissage et évaluer l'intelligence indépendamment du niveau de culture, souligne le Dr Mottron. Les armées du monde entier l'utilisent pour connaître la «comprenette» des engagés, compte tenu que le recrutement s'effectue souvent dans des milieux socioculturels défavorisés. Comme il est complètement dépourvu d'instructions verbales, le test de Raven a aussi servi dans un but anti-raciste à montrer que des populations qui avaient peu accès au code écrit étaient du même niveau d'intelligence que d'autres plus scolarisées.

Une force interprétée comme un déficit

De nombreux scientifiques associent les pics d'habileté des autistes à une intelligence strictement perceptive, qu'ils considèrent souvent comme une faculté cognitive peu évoluée. Pourtant, certaines tâches du test de Raven semblent nécessiter un traitement cognitif plus complexe que la simple perception, relève Laurent Mottron. Or, les autistes utilisent la perception autrement que nous le faisons, et ce, pour résoudre des tâches dites d'intelligence. «La perception est surfonctionnelle chez les autistes qui discriminent mieux que nous tant sur le plan visuel qu'auditif. Elle joue probablement un rôle plus important et plus efficace dans la résolution de tâches faisant appel à l'intelligence que chez les typiques», souligne-t-il.

Lorsqu'ils regardent un objet, les autistes catégorisent et généralisent beaucoup moins que les typiques. Ils explorent toutefois minutieusement la physique de l'objet, sa brillance, sa forme, et en font un traitement très approfondi qui leur ouvre de nombreuses portes, explique le chercheur. Les autistes semblent apprendre beaucoup plus de choses que nous par simple exposition. «Nous assimilons les informations sans faire d'effort intellectuel, de façon moins volontaire que les typiques, et sans vraiment savoir quoi en faire», précise l'autiste Michelle Dawson. «Cette connaissance reste là sans rien faire dans mon cerveau jusqu'à ce que je me retrouve devant une tâche dans laquelle cette information s'intègre et sert à résoudre l'interrogation.»

Par contre, quand Laurent Mottron lit un article scientifique, c'est pour chercher une certaine information qui confirmera ou infirmera son hypothèse de départ. «Je ne mémorise pas tout, j'élague tout ce qui ne concerne pas cette information pour ne pas me laisser distraire. Et si plus tard, j'ai besoin d'une autre information qui se trouvait dans le même article, je le relis», précise à son tour le psychiatre qui ne cesse de souligner l'apport incroyable de Michelle Dawson qui est devenue sa collègue de travail il y a près de trois ans. Or, on peut interroger Michelle après qu'elle a fait la lecture d'un article de la même façon qu'on interroge une base de données, car Michelle n'a pas de préférences dans ce qu'elle mémorise. Elle assimile maintes informations même si elle ne sait pas si celles-ci lui serviront. Mais ensuite, elle connecte ces informations avec ce qu'elle entend ou voit et cela lui donne nombre d'idées nouvelles et inattendues pour appréhender un problème. Qui plus est, sa pensée n'est jamais partiale alors que la nôtre l'est constamment puisque nous cherchons pendant des années à défendre les hypothèses que nous avons développées.»

Pour Michelle Dawson et Laurent Mottron, l'intelligence perceptive des autistes est sans conteste de l'intelligence vraie. La chercheuse autistique croit qu'«il faudrait évaluer l'intelligence à la capacité d'un individu d'effectuer ou non une tâche plutôt qu'au fait qu'il y arrive par des moyens typiques ou atypiques».

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GABRIEL BERNOT

http://jean.louchet.free.fr/Bernot/05_Bernot.pdf

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Laurent MOTTRON

http://www.lnc-autisme.umontreal.ca/n45/

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