AUTISMUL IN LUME

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Postby camel » Thu Jan 05, 2012 9:31 pm

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Postby dora » Mon Jan 09, 2012 11:07 am

Povestea lui Robbie sau lecţia americană

Autor: ADRIANA OPREA-POPESCU

2 noiembrie 2011
Robert Wood Jr este un băieţel autist de 8 ani din Virginia, SUA. Duminică, 23 octombrie a.c., el a dispărut de lân­gă tatăl lui, în timp ce se aflau într-un parc naţional. Copilul nu pu­tea vorbi şi, fiind lipsit de tratamentul medical, avea o hipeactivitate cres­cută. Adică mergea aproape tot timpul, înaintând haotic în zona împădurită ce se întinde pe o su­prafaţă de 33 de hectare.

În România, un copil ca Robbie dispărut în astfel de condiţii n-ar fi avut nici o şansă de viaţă. În Statele Unite, imediat după ce tatăl a anunţat dispariţia, iar po­liţia a apelat la ajutorul mass-me­dia, toată comunitatea locală a sărit în ajutorul lui Robbie şi a celor 300 de profesionişti care-l căutau pe copil.

1.500 de voluntari au participat la ope­raţiunile de scotocire, iar unii dintre ei veniseră cu maşinile de la sute de kilometri distanţă, impresionaţi fiind de suferinţa familiei. La în­ce­putul fiecărei zile, toţi voluntarii parti­cipau la un program de instruire de 30 de minute, înainte de a merge să caute în zonele desemnate. În presa ameri­ca­nă au apărut imagini cu sute de oameni stând la coadă, pentru a ajuta la salvarea unui copil.

Vineri, 28 octombrie a.c., la şase zile de la dispariţie, Robbie a fost găsit în viaţă. De un voluntar.

Copilul era ghe­muit pe malul unui pârâu, în poziţie fetală. A fost transportat cu un elicopter la spital, iar medicii au anun­ţat ulterior că starea lui de să­nă­tate este bună. Solidaritatea oamenilor, compasiunea şi spiritul lor civic l-au salvat pe băieţelul de 8 ani.

Pădurea Niculiţel din Tulcea e de trei ori mai mică decât parcul naţio­nal din Virginia. Acum 7 ani, tot într-o duminică, la 17 octombrie, aici a dispărut Vlăduţ Tudor. Avea 4 ani şi 8 luni. În prima noapte, când şansele de a fi găsit erau reale, pe Vlad l-au căutat 30 de oameni. Abia în a treia zi, când cazul a fost mediatizat, au venit şi voluntarii. De la Bucureşti şi Craiova, o mână de oameni care au căutat prin pădure două zile. În a patra zi, primarul a adus cu de-a sila câţiva localnici, preocupaţi mai degrabă de „Sărbătoarea vinului”, aflată atunci în plină desfăşurare.

Vlăduţ a fost găsit, în a şaptea zi de la dispariţie, de unul dintre puţinii voluntari rămaşi în zonă. Poliţia a declarat că băieţelul decedase cu doar 10-12 ore înainte.

Alis Sezer (3 ani) a dispărut în mai 2008, pe un câmp de lângă satul Viroaga. La scotociri au participat câteva zeci de oameni veniţi din Bucureşti. Căutările au fost îngreunate de localnicii care au refuzat să permită accesul cu utilaje în culturile de pe câmp. Două luni mai târziu, când s-a recoltat ovăzul, resturile umane ale băieţelului au fost găsite la nici un kilometru distanţă de locul dispariţiei.

Costi Velcev (7 ani) a dispărut la 23 iulie 2009 în staţiunea montană Rânca. La operaţiunile de căutare s-a înregistrat un număr record de voluntari pentru România: circa 300. Doar două-trei zile... Copilul a fost găsit întâmplător, de un văcar şchiop, la trei săptămâni de la dispariţie. Legiştii au stabilit că băieţelul murise de frig.

De fapt, în toate aceste cazuri cauza morţii este nepăsarea noastră. Nu hipotermia, nu deshidratarea, ci spiritul cinic ce ne împietreşte în faţa televizoarelor, aşteptând dez­no­dă­mân­tul la tragedia altora. Să mă duc sau să stau şi să văd cum se termină? Să se ducă ceilalţi!

În povestea lui Robbie, 1.500 de oameni au vrut ca acel copil să tră­ias­că. Şi au reuşit! Pentru un copil din Ro­mânia, credeţi-mă, oriunde şi ori­cui i s-ar întâmpla nenorocirea, miracolul acesta nu e posibil. Sufletul nostru se descompune. Nu mai simte nici compasiune, nici solida­­­r­i­tate. Părinţii îşi învaţă copiii să aibă, nu să fie. Să pună preţ pe bani, nu pe sentimente. Pentru mulţi dintre elevi, „iubeşte-ţi aproapele” e doar o lecţie plictisitioare din manualul de religie, iar „Educaţia Civică” – o materie searbădă despre drepturi şi îndatoriri pe hârtie.

Biserica, la rându-i, ne învaţă cum e cu solidaritatea şi covârşitoarea iubire dintre semeni la fiecare Bo­botează, când e bătaie pe aghiaz­mă. Iar mass-media ne otrăveşte zilnic cu doze mici şi aducătoare de ra­ting de tragedie ireparabilă şi inuti­l­ă. Morţi, violaţi, morţi sfârtecaţi, morţi, înmormântări. Ştirea despre găsirea lui Robbie nici măcar n-a fost difuzată în România. Ce nevoie avem noi de veşti pozitive sau de lecţii despre spi­ritul civic? Şi cui îi mai ajută să simtă? Nouă?!

Click pentru a viziona un fotoreportaj de la operaţiunile de căutare ale lui Robbie, la care au participat mii de voluntari
http://www.jurnalul.ro/editorial/povest ... 595431.htm
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Postby camel » Sat Jun 02, 2012 5:26 pm

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Postby camel » Mon Nov 19, 2012 3:48 pm

http://www.evz.ro/detalii/stiri/daniel- ... 11688.html

DANIEL TAMMET, UN AUTIST SAVANT | VIDEO

Autor: Alexandra Postelnicu

"Nu vreau ca oamenii să spună: "Uau, această persoana este un geniu ", spune Daniel Tammet," deoarece a fi un geniu este sinonim cu singurătatea şi am luptat atât de mult cu singurătatea în viața mea, îmi doresc să ajung la oameni."

Acel "să ajung la oameni" este punctul de plecare pentru Tammet pentru premiul obţinut pentru o carte, care explorează modul în care se simte a fi un autist savant - o persoană care are abilităţi extraordinare de memorie, matematică și limbă.

La cei 33 de ani, londonezul a memorat numărul pi la 22,514 zecimale, poate
efectua calcule aritmetice în cap, și a învățat islandeză într-o săptămână. Dar nu sunt realizări cu care îi place să se laude. "E doar o foarte mică parte din poveste," spune el, "și în afara contextului mă face să par ciudat.", relatează Guardian


În schimb, prioritatea lui Tammet este talentul său de a scrie, astfel el poate comunica sinestezia neobișnuită pe care o trăiește - el "vede" și "simte" numerele ca entități unice - şi să îi ajute pe oamenii de știință și pe cititorii săi să înțeleagă mai mult din modul în care funcţionează mintea.

El a fost numit "Rosetta Stone" a savanţilor, și premiat pentru o carte, "Născut într-o zi albastră" (Born on a Blue Day), care a fost tradusă în 23 de limbi. El spune că "Matematica este abstractă, iar abstractul este chiar mai dificil pentru oamenii din spectrul autistic. Eu nu pot face algebră, deloc!".
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Postby camel » Sun Nov 25, 2012 10:41 pm

daca cineva poate posta varianta tradusa a acestui articol sau a altor articole despre aceasta persoana, ar fi binevenit; este o poveste de viata ce merita cunoscuta

http://www.thestar.com/news/gta/article ... bject_map={%22454210524624519%22%3A169805843161621}&action_type_map={%22454210524624519%22%3A%22og.recommends%22}&action_ref_map

In 1951, Doris Newman and her husband, Jack, were disturbed by their 2-year-old daughter’s unusual behaviour. Pamela cried when they came close to her crib, but stopped when left alone.

Hoping to understand what troubled her, the Newmans took Pamela to the Hospital for Sick Children, where she was admitted. Ten days later, Dr. William Hawke, a pioneer in neuropsychiatry, told them she had a little-known disorder known as autism, possibly with infantile schizophrenia.

Pamela’s diagnosis was among the earliest — autism had first been reported in 1943 — in Ontario. In his seminal paper, which christened the condition with its “fascinating peculiarities,” American child psychiatrist Dr. Leo Kanner cited letters from parents describing their children who withdrew into a shell.

Years later, when Doris Newman tried to help her daughter understand her disorder, she told Pamela she had been a “shell baby.”

More: The Star’s Autism Project

Kanner knew and praised the work at Sick Kids. He had visited Toronto in 1937 for the opening of the Clinic for Psychological Medicine, where Hawke was a co-director.

Hawke may have been uncertain about Pamela’s diagnosis, hospital records show. He did not offer hope, advising her parents to “take her home and love her,” recalls Pamela Newman Button, a woman, who contrary to expectations, has led a richly diverse life — she rode a motorcycle, makes art and supports herself.

She has an appealing bluntness; her unvarnished language borders on poetic.

She is now a pioneer herself. At 63, she belongs to the first generation of people diagnosed with autism. They have now reached maturity or old age and still, they are a poorly understood, under-diagnosed and under-researched group. Some researchers refer to theirs as a lost generation.

What happens to older people with autism and how to help them as they age is as much a mystery today as treating children with autism was 60 years ago.

Most alarming is how few services are in place for the next generation, the so-called approaching “tsunami” of children with autism, when they become elderly.

Button’s story sounds a warning. The needs of her generation — including the many who have been cared for at home by now-aging parents and who will soon find themselves alone and without support — have to be addressed to prepare for the generation that will follow.

Her story also reflects the history of autism in Canada. “My whole life there have been no schools and no programs. Neighbourhood people never heard of autism. It was unknown, as if I lived my life without the condition being understood.”

Button didn’t speak until she was 6, she had been institutionalized and she felt “different.” In her adult life she was beset by organizational problems — coping with paperwork was a problem — and tended to obsess and dominate conversations on subjects that interested her, things like the weather or her pet rabbits.

She has never had a friend, especially a woman friend, with autism she could hang out with or go to the movies. “It’s like God made Adam, but no one else.”

And now that she is aging, she is anxious about what awaits her. It has become more difficult to live alone. What will happen if she ends her days in a nursing home?

“What are they going to do with a person with autism? They need to understand the way I act, the way I talk, my gestures. Some people tell me I have a peculiar voice that irritates people.”

The problem, scientists say, is finding older people to study. “Anyone born before 1970 may have autism, but not gotten the label,” says Ruth Carper, a University of California, San Diego neuroscientist who is following 44 adults with autism as they age.

“There are probably plenty of people in their 80s but we don’t know how to find them because they didn’t the get diagnosis.”

It’s believed there are about 100,000 Ontario adults on the autism spectrum, based on the recent 1 in 88 finding by the U.S.-based Centers for Disease Control and Prevention.

“It first presents in childhood,” says Kevin Stoddart, a Toronto social worker and co-author of the recently published Asperger Syndrome in Adulthood. “But kids grow up and we’ve not been very good at acknowledging that a kid with autism will be a youth or an adult with autism.”

There has also been an unexpected twist in the last decade. Stoddart has found another group of older adults — more than he had imagined possible — seeking their first autism diagnosis, in their 50s, 60s and 70s. They may come to his Redpath Centre because a child or grandchild has been diagnosed with Autism Spectrum Disorder or because they want to understand themselves better.

“Older adults are looking for answers: why are they the way they are? They had so many difficulties — connecting with people, organizing their lives, problems with mood, anxiety or depression, misinterpreting social situations, being on the fringes all their lives. It’s profound.”

The rate for adults with autism is about the same as for children, according to a 2009 British study. Many have been misdiagnosed with childhood schizophrenia or an intellectual disability.

“So many of them were institutionalized they got lost behind locked doors,” says Susan Bryson, the Craig Chair in Autism Research and a professor at Dalhousie University. As they grew older, they ended up in nursing homes, even though they were not yet seniors. “And they were misdiagnosed there, too.”

In Canada, researchers are just beginning to look at the effect of aging on people with autism. One of the first steps is basic: develop a screening tool to identify older people with the disorder. The same measures that are used for children can’t reliably be used for adults, says Julie Dergal, a Canadian Institutes of Health Research post-doctoral fellow at McMaster University, who is working with Parminder Raina of the Canadian Longitudinal Study on Aging to develop a screening tool. “We need an understanding of how autism and aging interact.”

When diagnosing children, parents or older relatives provide family histories or observations of behaviour. Health-care workers can describe what therapies were used, or teachers, what problems were faced at school. That is often difficult or impossible with elderly people, so new types of screening tools have to be devised.

Moreover, doctors, seeing older people who have not been diagnosed, may have no experience with an adult with autism. “It’s not even on their radar to be thinking about autism,” says Dergal. “This area of research is very new, because this is the first cohort to age with the disorder.”

It was also very new in the 1950s when Button was a child growing up in Hamilton and Ancaster. Doctors didn’t know how to treat her. People she met didn’t know what to make of her either. She had eccentric habits — she barked, she hummed to herself, rocked her body and chewed on magazines. “My mom said, ‘If you don’t cut out that behaviour, I’ll put you in a place for crazy children.’ ”

Her mother waited 20 years before telling her that her condition was known as autism, because she didn’t think the young woman could take it in.

“I kept asking her, ‘What’s wrong with me. Why am I behind in school? Why am I seeing a psychiatrist?’ ”

She recalls a phrase from a magazine article that her mother gave her. “It described ‘the autistic child’s haunted world.’ But that was not my world. My world as a child was beautiful; it was full of music and colour.”

At 13, she was sent to a Montreal boarding school for “disturbed” children — she had become aggressive as she approached puberty — for a year. When she was 15, she was sent to the Hamilton Psychiatric Hospital. She attempted suicide. She felt an outsider; she was sometimes locked in an isolation room. “Nothing was talked about,” she recalls.

Button had 18 electroconvulsive therapy treatments. “I agreed because I would have done anything to be normal,” she says. “I’d seen other people helped, of course.”

Some thought she was “weird;” others, that she was intellectually challenged. She was offended. “I feel I’m not stupid. I’m not bright, I’m just average.”

When she was 16, a sheltered workshop for people with disabilities opened in Oakville where she worked assembling nuts and bolts. “Luckily, the workshop was there or I would have spent my life in an institution,” Button told Margaret Spoelstra, executive director of Autism Ontario in an interview for the book In Our Own Words. “It’s like a dog being rescued from an animal shelter.”

Button has an artistic nature and one enhanced by autism — she sees words and names in colours. Her friend Robin is green. Ginny is orange-brown. Pam herself is dark blue. Art saved her, she says now. Later, in her 50s, she started painting with watercolours and then acrylics.

She was taught how to silkscreen as a teen, showed aptitude and was soon in charge of the silkscreening program, which produced Christmas cards. “Finally, somebody discovered a talent,” she says.

“That broke the autistic code. With encouragement and praise, I could do well. But if all they do is criticize you, you don’t.”

During her 20s, Button worked for an environmental company cleaning lab glass. “I felt very important, like a somebody. Those were some of my happiest days when I didn’t receive ODSP (Ontario Disability Support Program) any more.”

Button married, against her parents’ wishes, when she was 30. Her wedding day was the day she stopped compulsive rocking. She stopped listening to music for fear it might inspire her to start again. “I loved my husband at the time,” she says of Dennis Button, who was a car-wash attendant. “He was a boyfriend. I wanted a soulmate. I wanted to be like everybody else and thought it was the thing to do.” The marriage lasted seven years.

After her lab glass job, which lasted ten and a half years, she worked for a private cleaning company and then, for 17 years, was a cleaner and custodian for the Halton District School Board.

“Don’t you think 30 years is a long time for a person with autism to work?” she asks. “I was proud to do that. I felt I was contributing to society. I was a taxpayer and part of the economy, instead of the country keeping me.”

A high-functioning person with autism, Button has led an independent life. She has owned a motorcycle and several cars. She became her own advocate, reaching out by phone and making friends with experts in the autism community. Every week, for the last 11 years, she has called Susan Bryson in Halifax.

She has come to understand the effects of the disorder. “I don’t like talking to answering machines. I don’t like crowds much. I can’t stand people chewing gum. It gets on my nerves, the crackling noise. I dread the noise and bustle in stores and the clerks aren’t always nice.”

As she matured, her social skills also improved; learning continued throughout her life. She became more sensitive to others and could interpret tone, sarcasm and humour in conversation, says Robin Brennan, a director at Woodview Mental Health and Autism Services in Burlington, who became a loyal friend.

“I still can’t read facial expressions very well,” she adds. “But I learned a new social skill this week. When you’re not feeling well and you’ve had enough of the visit, you say, ‘Thank you for coming.’

“Another one: when a doctor gets up from his desk, he’s through with you.”

While being interviewed for this story, Button learned she had advanced ovarian cancer. She was experiencing a massive buildup of fluid in her abdomen. The doctors who saw her were puzzled and upset that she had waited so long to come in for treatment.

One of the problems with autism, generally, Bryson explains, is unusual sensory experience, not just to external stimuli, but also to internal. People with autism have trouble locating the pain. “They have a high threshold for pain and don’t perceive it until it is so extreme it is a crisis.”

Button is worried — what effect will chemotherapy have on her autism symptoms? She is afraid she will become more aggressive, that cognitive functions will regress and her moods will be less stable. It’s an unknown. She is, as she has been throughout her life, a canary in a mine shaft. Her cancer specialist has no experience in treating a person with autism.

“I want to emphasize there is a huge cohort of people with autism coming up and we’d better start understanding what happens when they age, because we’re going to have to provide service for them,” Bryson says.

Even independent people such as Button.

“I call myself a pioneer of autism, because I went through hard times and because there were no programs, nothing. I was in a mental hospital for a long time and it left a scar on my life because I was in a locked ward. But it’s fading now.

“For many years, I dreamed I was back in, but those dreams have started to subside, too.

“The last dream I had I was on staff. I was not a patient.”

Epilogue: Pamela Button died unexpectedly early Friday, Nov. 9. She wanted to leave a legacy, her family said, and was keenly awaiting the publication of this story.

She asked her friends if she would become famous in Canada, like well-known American advocate Temple Grandin. She died the day before her photograph was on the paper’s front page. Button didn’t live to know that she was named an ambassador for autism in Canada last month, at the International Naturally Autistic People Awards and convention in Vancouver.
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Postby dora » Mon Dec 10, 2012 1:45 pm

GEST IMPRESIONANT făcut de Nadia Comăneci în SUA

PUBLICAT 10.12.2012
Nadia Comaneci, alături de sotul ei, Bart Conner, si de impresarul lor, Paul Ziert, se implica in activitati caritabile. Astfel, 100 de copii autisti vor face gratuit cursuri la Academia de Sport a Nadiei Comaneci.

Nadia Comaneci, sotul ei Bart Conner si impresarul lor Paul Ziert s-au implicat, de curand, in organizarea unui summit dedicat copiilor care sufera de autism. Paul Ziert, impresarul Nadiei si al lui Bart Conner a postat recent pe contul sau de pe o retea de socializare un mesaj despre aceasta actiune, anunţă WOWbiz.

"100 de copii care sufera de autism vor putea face cursuri de educatie fizica, gratuit, timp de o saptamana in cadrul academiei noastre. Acest program functioneaza cu succes de aproape patru ani de zile", a tinut sa precizeze Paul Ziert.

http://www.realitatea.net/gest-impresio ... 70658.html
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Re: AUTISMUL IN LUME

Postby camel » Fri Apr 19, 2013 6:11 pm

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Re: AUTISMUL IN LUME

Postby dora » Thu Jul 04, 2013 4:41 pm

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Re: AUTISMUL IN LUME

Postby camel » Mon May 26, 2014 7:55 pm

http://www.cursuriautism.ro/armata-isra ... izuale.php

Armata israeliana recruteaza tineri cu autism pentru abilitatile lor vizuale



“Unitatea 9900″, un corp de elita al serviciilor secrete israeliene, inroleaza recruti cu autism pentru a furniza informatii detaliate comandantilor care combat pe teren: tinerii autisti examineaza cu atentie fotografiile prin satelit pentru a identifica cele mai imperceptibile schimbari de imagini.

O capacitatea vizuala extraordinara: aceea de a detecta cele mai mici si imperceptibile schimbari de imagini. Armata israeliana continua sa recruteze tineri cu autism pentru a folosi aceasta “zestre” a lor. Destinatia pentru acesti recruti este prestigioasa “Unitate 9900″, un corp super-specializat care studiaza datele si imaginile transmise de satelitii israelieni de pe orbita Pamantului, sateliti care furnizeaza informatii detaliate si sensibile.

Sarcina acestor “Rain Man” in uniforma este examinarea si masurarea cu precizie a imaginilor de structuri, zone si obiective, captate prin satelit si transmise de un calculator: de cele mai multe ori aceleasi dar cu unghiuri si momente diferite. Ei au dovedit ca sunt capabili sa perceapa cea mai mica schimbare, care ar fi scapat in schimb celorlalti colegi. “In acest fel – a declarat comandantul lor – salveaza vieti omenesti”, militarii au in mana, de fapt, informatii mult mai detaliate si decisive.

Deja de patru ani, armata – cu avizul pozitiv al sefului Mossad, Tamir Pardo – inroleaza tineri cu autism. Primul dintre ei care a imbracat uniforma militara, in 2010, a fost Peer Zohar, in varsta de 21 de ani.

sursa: muntenia-news.ro
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Re: AUTISMUL IN LUME

Postby camel » Sat Jan 10, 2015 6:33 pm

DON'T MOURN FOR US
by Jim Sinclair, persoană cu autism şi activist pentru drepturile persoanelor cu autism
======================================================================

[This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. It is an outline of the presentation Jim gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]

Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.

But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

I invite you to look at our autism, and look at your grief, from our perspective:

Autism is not an appendage

Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.

This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

I wish my child did not have autism,

what they're really saying is,

I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

Autism is not an impenetrable wall

You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.

Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.

That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant.

It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world.

And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career--but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision--but is not completely beyond your reach. The ways we relate are different. Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined.

Yes, that takes more work than relating to a non-autistic person. But it can be done--unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can't relate.

Autism is not death

Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to.

But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives--

but it has nothing to do with autism.

What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn't happened. It isn't going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn't arrive.

This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss--not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at t time the child being mourned for died.

You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you.

This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?

Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor. This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do--away from the autistic child--and start learning to let go.

After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it."


If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.

Jim Sinclair.

http://www.autreat.com/dont_mourn.html
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Re: AUTISMUL IN LUME

Postby camel » Tue Mar 08, 2016 11:30 pm

https://newsautism.wordpress.com/2016/0 ... aordinare/

„Sindromul Savantului”. Legatura dintre autism si abilitatile extraordinare
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Re: AUTISMUL IN LUME

Postby dora » Tue Jan 02, 2018 7:28 pm

Povestea lui Ethan: Privind viitorul unui copil cu autism

Cum se schimba viata unei familii cand copilul este depistat cu autism
http://cursuriautism.ro/povestea-lui-et ... autism.php

Astăzi îți prezentăm povestea lui Ethan, un tânăr cu autism care a reușit să își surprindă părinții și să evolueze atunci când nimeni nu se aștepta. Iata ce povesteşte mama lui. „Pe măsură ce limitele fiului meu deveniseră mai clare, mi-a fost tot mai greu în fiecare an să scriu o declarație de viziune pentru planul său individual de educație. Apoi, el ne-a arătat cum. Cum ai putea să scrii despre o viaţă fericită pe care speri că o va avea copilul tău, când ţie îţi este greu să ţi-o imaginezi? Timp de 18 ani, în fiecare an, mi-a fost frică de perioada în care trebuia să scriem declaraţia de viziune, pentru fiul nostru Ethan. El are autism şi, ca orice părinte al unui copil cu nevoi speciale, această întâlnire anuală cu echipa de lucru poate fi emoţionantă şi tensionată. Uneori, simţeam că această întâlnire este ca o ajustare a aşteptărilor noastre, din ce în ce mai mici. În teorie, declaraţia de vizune este o idee minunată – o oportunitate pentru părinţi să contureze un viitor optimist pe care îl visează pentru copilul lor. În realitate, limitările cognitive şi comportamentale ale lui Etahn au crescut şi au devenit mai clare, fiindu-mi din ce în ce mai greu să scriu acel scurt paragraf în fiecare an. Am realizat că el nu poate avea o viaţă independentă, nu poate să se căsătorească, să lucreze fără să aibă un suport, dar dacă acestea ne-au fost date, cum arată un viitor plin de speranţă pentru el? Anul acesta, Ethan a împlinit 21 de ani, a absolvit ultimul an de şcoală şi ne-a surprins când a scris propria declaraţie de viziune. Mai mult de atât, cuvintele scrise de el m-au făcut să realizez cât de mult am greşit în aceşti ani încercând să creioez viitorul copilului meu. Încă de pe vremea când Ethan era în şcoală primară, delaraţia noastră de viziune includea aceeaşi listă de dorinţe pe care orice părinte al unui copil cu autism o are: o comunicare mai bună, mai puţine crize, mai multă independenţă. Când a împlinit 12 ani, am devenit mai pragmatică, ne întrebam dacă lui Ethan i-ar plăcea maşinile agricole, poate că într-o zi acestea ar putea deveni o oportunitate de angajare. La 13 ani, după un succes avut în corul muzical al şcolii, am scris: “Lui Ethan i-ar plăcea un viitor în muzică, poate să fie cântăreţ?” În acel punct, Ethan încă avea dificultăţi în a folosi şerveţele nazale. Un viitor în muzică, poate suna forţat, ştiu, dar am scris-o că pe o modalitate de a spune că Ethan are abilităţi. Facem tot ce putem pentru a le dezvolta. Aceasta este cea mai mare provocare pentru părinţi în timpul acestor întâlniri anuale: te lupţi ca profesorii să îţi ajute copilul pentru un viitor care se simte mai limitatşi mai complicat în fiecare an. Când devine foarte clar că el nu va înţelege niciodată suficient de bine rolul banilor, tai de pe lista posibilitatea ca el să lucreze într-un magazin. Când nu se va putea opri din a-şi scarpina nasul sau din a-şi atinge gura la locul de muncă, toate oportunităţile din domeniul alimentaţiei publice, de asemenea, vor dispărea. Atunci când va începe să vorbească singur şi îi va deranja pe angajaţii din centrul unde îi place să facă voluntariat, altă uşă se va închide.
Chiar dacă Ethan a trecut de la un job la altul, el a rămas fidel pasiunilor sale: muzică, maşinile agricole şi colecţionarea cărţilor de vizită. Orb la ceea ce pentru noi părea un viitor gol şi înfricoşător, el era destul de vesel în fiecare zi. În orice caz, una dintre problemele lui la locul de muncă erau glumele sale neînţelese şi copilăreşti. Din disperare, l-am înscris pe Ethan la o fermă locală specializată în angajarea tinerilor cu dizabilităţi, cu speranţa că va avea acelaşi rezultat ca alţii. La început, a fost interesat, apoi s-a plictisit, apoi, pentru că era plictisit, a devenit agitat şi nesigur în apropierea echipamentului într-o manieră în care l-ar fi dat afară din program. Acesta era tiparul lui şi, dacă am învăţat ceva din toate acestea, este faptul că aceşti copii cu autism îşi iubesc tiparele. Ce am scris în acel an pe delaraţia noastră de viziune a reflectat cele mai mici aşteptări ale noastre: “Ne dorim că Ethan să rămână în program şi anul acesta.”. Apoi, Ethan ne-a surprins. A lucrat acolo timp de o lună de zile şi nu am primit niciun telefon de la angajaţi. După 6 luni, am primit un feedback minunat: “Este amuzant! Şi un muncitor bun pentru o oră sau două pe zi!” După un an, am fost anunţaţi că a făcut parte din echipa de peisagistică. “Ce faci în echipă?” l-am întrebat. “Chestii”, a răspuns Ethan şi a început să ne spună o lista de maşini pe care noi am presupus că le foloseau alţi oameni. Putea cosi peluza, ştiam deja asta, dar nu putea să folosească un aparat de suflat frunze sau maşină de tuns iarbă. Trăiam cu Ethan de 21 de ani şi îi cunoaştem limitele. La ultima întâlnire, unde am discutat despre planul său individual de educaţie a venit şi un reprezentant de la fermă şi ne-a citit un raport de la echipa de peisagistică a lui Ethan. Chiar aşa era, Ethan folosea acele maşini în siguranţă şi eficient, iar ultima menţiune a raportului său a fost: “Ethan ne face să radem în fiecare zi”. Ethan Nu-mi venea să cred. M-am uitat pe furiş la tatăl lui şi am zâmbit. Această întâlnire a apărut într-o perioadă foarte grea din viaţa mea şi am venit fără să am scris dinainte declaraţia de viziune. Cum am început să mă scuz, coordonatorul vocaţional – o femeie tânără care s-a zbătut 4 ani să îi găsească lui Ethan un loc de muncă – a ridicat mâna. “Este în regulă. Anul acesta, Ethan şi-a scris singur declaraţia.”
Aparent, el i-a dictat-o în vizită ei recentă la fermă. Câteva minute mai târziu, el a citit-o cu voce tare: “După ce am terminat liceul, mi-am propus să lucrez la Ferma Prospect Meadow până voi ieşi la pensie şi să locuiesc acasă cu familia mea atâta timp cât voi putea. Mi-ar plăcea să merg în continuare la cursurile de la Academia de Muzică Berkshire Hills. Ca să mă distrez, vreau să joc baschet la Olimpiada Paralimpică, să merg la cabana noastră din Vermont şi pe ţărmul din New Jersey, să îngrijesc peluzele şi să colecţionez cărţi de vizită. Planurile mele pentru viitor sunt să merg cu autobuzul până în oraş să fac cumpărăturile şi într-o zi să învăţ cum se conduce o maşină de tuns iarba cu torsiune zero.” Nimeni nu a zis nimic timp de câteva secunde. M-am uitat peste masă la logopedul lui care îl cunoştea de când avea 14 ani. Avea lacrimi în ochi. La fel şi eu. Nu doar pentru că Ethan şi-a descris în totalitate propria declaraţie de viziune în mod corect, dar şi pentru că a inclus toate aspectele din prezent care îi aduc bucurie. După ani de zile în care am fabricat viziuni pentru un viitor pe care nici noi nu l-am considerat posibil, Ethan ne oferea una care era în acelaşi timp şi optimistă şi incredibil de simplă: Vreau că viaţa mea să fie aşa cum este acum. Îmi doresc să pot spune şi altor părinţi care sunt la început în această călătorie ce mie mi-a luat două decenii să învăţ. În primul rând, copilul tău va continua să crească şi să se schimbe, chiar şi la 21 de ani te poate surprinde făcând ceva ce tu nu ai crezut niciodată că va fi posibil. În al doilea rând, că în cele din urmă succesul nu va fi măsurat de performanţe academice sau de cele de la locul de muncă. Va avea mai mult de-a face cu acumularea micilor plăceri şi umplerea vieţii cu acestea. Nu ştiu de ce nu m-am gândit niciodată la asta: Viitorul ar trebui să arate ca cele mai bune părţi ale prezentului tău.” Sursa: New York Times // www.atca.ro Foto: Josephine Sittenfeld
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