I CONGRESSO INTERNACIONAL DA PRO INCLUSÃO - SER PROFESSOR DE EDUCAÇÃO ESPECIAL

PROGRAMA PROVISÓRIO – VERSÃO 02
27/Nov - Sexta-feira
18:30/20h30:Recepção aos participantes e entrega da documentação

Sessão de Abertura

Conferência: “Educação Especial e Educação Inclusiva” – Mel Ainscow (Universidade de Manchester) Apresentadora: Ana Maria Bénard da Costa.
Conferência: “Ser Professor Hoje” – António Nóvoa (Universidade de Lisboa). Apresentador: Sérgio Niza

Intervalo

Mesa-redonda: “Sistemas Educativos e Professores de Apoio: Perspectivas Internacionais”. Coordenação: Seamus Hegarty
- Kenneth Eklindh - UNESCO
- Lorraine Petersen - NASEN: National Association of Special Educational Needs (Reino Unido)
- Representante do Council of Exceptional Children (Estados Unidos)

Almoço

Mesa-redonda: “Construir a Educação Inclusiva: implicação de toda a escola,cooperação profissional”. Coordenação: João Gomes Pedro
Emílio Salgueiro – (ISPA)
Luisa Taveira (Escola Superior de Saúde - Alcoitão)
Luis Miranda Correia (Universidade do Minho)

Intervalo e Sessão de Posters

Apresentação de Comunicações

Assembleia Geral da Pró-Inclusão - ANDEE

Jantar do Congresso*

28/Nov - Sábado
17h00/18h30 - Conferência: “Ensinar: Agir na Urgência, Decidir na Incerteza” – Philippe Perrenoud (Universidade de Genebra). Apresentador: António Teodoro
Mesa Redonda 1: “Avaliação e Intervenção Educacional: Modelos e Práticas”. Coordenador: Jorge Barbosa
Deficiência Intelectual - Sofia Santos - Universidade Técnica de Lisboa
Dificuldades de Aprendizagem - Vitor da Fonseca – Universidade Técnica de Lisboa

ou

Mesa Redonda 2 : “Avaliação e Intervenção Educacional: Modelos e Práticas”
Deficiência Auditiva – António Vieira – Universidade Portucalense
Deficiência Visual - Serafim Queirós (DREN)
Deficiência Motora – Margarida Nunes da Ponte – APPC - Lisboa
Intervalo
Mesa Redonda 3: “Avaliação e Intervenção Educacional: Modelos e Práticas”. Apresentador: José Morgado
Multideficiência
Autismo

ou

Mesa Redonda 4: “Avaliação e Intervenção Educacional: Modelos e Práticas”. Apresentador: Francisco Ramos Leitão
Problemas de Comportamento - Margarida Matos – Universidade Técnica de Lisboa
Déficit de Atenção - Ana Rodrigues – Universidade Técnica de Lisboa
Almoço
Mesa-redonda: “Intervenção do Docente de Educação Especial em diferentes Contextos”
Intervenção Precoce - Teresa Brandão - Universidade Técnica de Lisboa
Centros de Recursos para a Inclusão – Francisco Ramos Leitão – Universidade Lusófona
Ensino Superior - Lilia Pires – Universidade de Lisboa
Intervalo e Sessão de Posters
Apresentação de Comunicações

29/Nov - Domingo
Conferência: “Educacão Inclusiva: onde estamos, para onde vamos”, Windyz Ferreira - Universidade Federal da Paraíba – Brasil. Apresentadora: Luzia Lima-Rodrigues (Instituto Piaget – Almada)
Conversando com quem faz... (sessões paralelas):
- Tecnologias da Informação e Comunicação
- Política Nacional de Educação Especial
- Formação de Professores de Educação Especial e Inclusiva
- Diferenciação Curricular
- Planos Individuais de Transição
- Psicomotricidade e Educação Especial
Intervalo
Conclusões. Entrega de Medalhas de Mérito da ANDEE. Encerramento.
Programa Turístico* (a definir)

Genes 'have key role in autism'

Scientists have produced the most compelling evidence to date that genetics play a key role in autism.

They highlighted tiny genetic changes that appear to have a strong impact on the likelihood of developing autism and related conditions.

The changes influence genes which help form and maintain connections between brain cells.

The Nature study highlighted one common genetic variant in particular which, if fixed would cut cases of autism by 15%.

Previously, other genetic variants have been linked to autism, but they are all relatively rare.

There are going to be many genes involved in causing autism

Dr Hakon Hakonarson
University of Pennsylvania
Dr Raynard Kington, of the US National Institutes of Health, which funded the research, said: "These findings establish that genetic factors play a strong role in autism spectrum disorder (ASD).

"Detailed analysis of the genes and how they affect brain development is likely to yield better strategies for diagnosing and treating children with autism."

People with ASD, which include autism and Asperger's syndrome, have problems with social interaction, poor communication skills and tend to engage in repetitive behaviours.

In the latest studies researchers scanned the human genome for small differences between people who have an ASD, and those who do not.

The largest study, led by the University of Pennsylvania, focused on more than 10,000 people.

Sticky cells

It found several genetic variants commonly associated with ASD, all of them pointing two specific genes found on chromosome 5 which control production of proteins which help cells stick to each other, and make nervous connections.



A bead chip used to analyse human DNA en masse
One variant, linked to a gene called CDH10, was so common - present in over 65% of cases of autism - that the researchers calculated that fixing it would cut the number of autism cases by 15%.

They also linked ASD rather less strongly to a group of about 30 genes which produce proteins that play a key role in enabling brain cells to migrate to correct places, and to connect to neighbouring cells.

Other genetic changes pinpointed by the Pennsylvania team occurred in genes involved in a cellular waste system which probably ensures these "adhesion" proteins are kept in working order.

Lead researcher Dr Hakon Hakonarson said the genetics of ASD was likely to be complex.

He said: "Because other autism researchers have made intriguing suggestions that autism arises from abnormal connections among brain cells during early development, it is very compelling to find evidence that mutations in genes involved in brain interconnections increase a child's risk of autism."

But he added: "There are going to be many genes involved in causing autism.

"In most cases, it's likely that each gene contributes a small amount of risk, and interacts with other genes and environmental factors to trigger the onset of disease."

Similar findings were reported in separate studies published in Annals of Human Genetics and Molecular Psychiatry.

Science 'accelerating'

Professor Simon Baron-Cohen, an autism expert at the University of Cambridge, said 133 genes had now been linked to the condition, and much work was needed to piece together how they interacted with each other and the environment.

He said: "The puzzle is slowly being pieced together, and the science of autism is accelerating in promising ways."

The National Autistic Society said the exact causes of autism were unknown.

In a statement, the society said: "There is evidence to suggest that genetic factors are responsible for some forms of autism.

"However, the difficulty of establishing gene involvement is compounded by the interaction of genes and by their interaction with environmental factors.

"Various studies over many years have sought to identify candidate genes but so far inconclusively."

In: BBC News

Seminario Autismo

Organização:
CLIDUCA - Centro Psicopedagógico e Terapêutico,Lda.
CADIn - Centro de Apoio ao DesenvolvimentoInfantil
Scretariado:
CLIDUCA
Valongo- - Largo do Centenário, 28
4440-508 VLG
Tel.:224 221 183-224 223 079
Tlm.:934 021 039
Fax: 224 223 078
Email: cliduca.valongo@sapo.pt

Preço de Inscrição:
Até 9 de Junho:
Profissionais: 65 € Estudantes : 50€
Do dia 9 ao dia 19 de Junho:
Profissionais: 70€ Estudantes : 55€
No próprio dia (26 de Junho):
Profissionais: 75€ Estudantes: 60€
Destinatários:
• Profissionais e estudantes com intervenção nas áreas de Educação e Saúde
• Pais e Encarregados de Educação
Certificado:Os participantes terão acesso a um certificado de participação
Seminário:
AUTISMO
VALONGO
Largo do Centenário, 28
4440-508 Valongo

GONDOMAR
Pr. Manuel Guedes, 240 R/C
4420-193 Gondomar

CÂMARA MUNICIPAL DE GONDOMAR
Apoio: Auditório Municipal de Gondomar
26 de Junho de 2009

Medalha de Merito para APPDA-Norte

NO ÂMBITO DAS COMEMORAÇÕES DO 25 DE ABRIL, O MUNICÍPIO DE VILA NOVA DE GAIA, VAI RELIZAR UMA CERIMÓNIA NA QUAL VAI SER ENTREGUE UMA MEDALHA DE MÉRITO À APPDA-NORTE.
A CERIMÓNIA REALIZA-SE ÀS 10H30M, NO PARQUE DA LAVANDEIRA.
GOSTARÍAMOS DE CONTAR COM A PRESENÇA DE TODOS.

A DIRECÇÃO

Life With Autism is a new series of inspirational and informative stories about those who are touched by autism.

You may be aware that AMC Entertainment (AMC) and ASA have teamed up to bring families affected by autism and other disabilities a special opportunity to enjoy their favorite films in a safe and accepting environment on a monthly basis with the “Sensory Friendly Films” program.

Now read how this wonderful, nationwide program came to be, thanks to the efforts of one determined mother confronting the challenges of her daughter's autism...

Taking a Chance on Families Living With Autism
by Marianne Ross

The sensory friendly movie idea started in the summer of 2007, when my daughter, Meaghan, who was 7 at the time, was thoroughly enjoying Hairspray but was asked to leave a movie theatre because she exhibited self-stimulating behaviors, such as hand flapping and jumping up and down.

This negative experience prompted me to find a way for Meaghan and other special needs children to enjoy a movie regardless of their physical or behavioral differences.

Dan Harris, manager at our local AMC Columbia 14 Theatre, didn't hesitate for a second when I called to ask if he would consider allowing the Howard County Maryland Autism Society of America to host a movie for special needs children.

I explained the challenges that our children face, specifically sensory issues with lights, volume and self-stimulating behaviors. Dan, rather than being dissuaded, embraced these issues with his positive attitude. He envisioned a monthly program that featured current movies with essential accommodations to ensure a successful outing for all families with special needs children.

I arranged to advertise the movies through the Howard County-ASA and the Howard County school system in order to reach each family with school-aged children in the county. Meanwhile, Dan networked with the AMC Theatre's corporate office to create a national program and an official partnership between AMC and the Autism Society of America.

The first movie was a huge success in November 2007, and the program went national this April in 68 theatres in 36 AMC markets. They are also going to start employing people with autism in the theatres, with support from ASA!

Pais Iguais Filhos Diferentes - (Re)pensar a escola, (re)construir projectos

Decorreu ontem (18/4) no Auditório da Fundação Portugal - África (Lordelo do Ouro) um encontro regional da Comunidade educativa sob a égide da Federação Concelhia das Associações de Pais do Porto.
Foram apresentadas várias comunicações das Associações ligadas à deficiência/incapacidade.
A APPDA -Norte esteve representada pelo Fernando Miguel Azevedo.
DE salientar algumas ideias veiculadas.
- Inclusão - todos de acordo.
- E depois dos 18? Que inclusão?
- Se a escola (comunidade educativa total) não está preparada (formada, sensibilizada)para atender as diversas diferenças, como se pode falar de inclusão?
- Que inclusão se os professores do ensino regular não tiveram formação adequada?
- Unidades de referência e liberdade de escolha de escola por parte dos pais.

In: Autismo em Gaia

Reacção da APPDA-Norte

«A vice-presidente da delegação norte da Associação Portuguesa para as Perturbações do Desenvolvimento e Autismo (APPDA) manifestou-se, por sua vez, "totalmente a favor" da decisão dos líderes parlamentares. Ao JPN, a responsável evidencia que "os deputados não devem usar um termo que seja uma limitação" por se tratar de "uma falta de respeito pela pessoa com autismo".

"Não é correcto nem aceitável vindo de pessoas com formação como os deputados. Deviam usar outras palavras, dar o exemplo e falar um bom português", argumenta Ana Maria Gonçalves. A responsável da APPDA-Norte apela, por fim, ao refreio de palavras que remetam para outro tipo de doenças ou limitações como "cego", "surdo" ou "histérico".»

Por Miguel de Azevedo Carvalho in JPN

Expressão “autista” será evitada no Parlamento

14.04.2009 - 16h10 Sofia Rodrigues
As expressões “autista” e “autismo” deixarão de ser usadas na retórica parlamentar, à luz de um acordo a que chegaram hoje os líderes parlamentares, em conferência de líderes, em resposta a um apelo de um deputado do PSD.

O deputado Luís Carloto Marques, do Movimento do Partido da Terra, eleito pelas listas do PSD, alertou para o uso recorrente das palavras “autismo” e “autista” nos debates parlamentares para identificar situações de alheamento face aos problemas.

Segundo o apelo do deputado, entregue ao Presidente da Assembleia da República a propósito do Dia Mundial de Consciencialização do Autismo, celebrado a 2 de Abril, só na actual legislatura as expressões “autista” e “autismo” aparecem referidas, respectivamente, em 66 páginas de 57 diários e em 91 páginas de 66 diários.

O deputado pediu para que os deputados confinem o uso das expressões apenas “ao seu contexto adequado, ou seja, tão-só o da análise dos direitos das crianças e dos jovens com autismo”. O autismo é um distúrbio de desenvolvimento que afecta as capacidades de comunicar e de interagir socialmente.

Games that help autistic children

Parents of autistic children need not despair. It has been proved that therapies using Lego can be an enormous help

Alexandra Blair

There is no easy way to start a conversation about autism. Images spring to mind of a child sitting under his desk, rocking to and fro, unable to communicate and throwing tantrums. Or the film Rain Man and the misunderstood geniuses who struggle alone in the world. To many, a diagnosis of autism in a child is a family trag-edy and spells a lifetime of challenge. But a new study that investigates how Lego can help some autistic children to socialise is giving hope to families across Britain.

Brian is 13 and had Asperger syndrome (a type of autism), diagnosed four years ago. Highly intelligent with an advanced imagination, he would while away hours in his own world, but start flailing if he panicked or became overexcited. He was obsessive, could not sit still and did not understand social mores.

“Autistic children are very honest and don't understand social lies,” says his mother Gail Tyrrell, 43, from Cambridge. “If someone was acting happy but was in fact feeling very sad, he would ask them why they were feeling so sad. It could be tricky because people got frightened and thought him weird.”

Refusing to accept that his behaviour was not caused by bad parenting, his local primary school was unwilling to help. Although he passed his Sats tests, it would informally exclude him by sitting him in the corner of the classroom and threaten to keep him behind a year unless his behaviour improved. As a result, Gail enrolled Brian in the Lego club exercise conducted at Cambridge University's Autism Research Centre in 2005, along with 15 other children, mostly boys, aged 6 to 11, with an IQ over more than 70. For six months, they gathered for an hour a week to play with Lego. The idea behind the therapy, developed initially by Dan LeGoff in Philadelphia, was to encourage high-functioning children with autism or Asperger syndrome to communicate with each other and solve a problem by building in pairs or groups of three, according to set rules.

One child acted as the “engineer” and described the instructions, another as the “supplier” finding the correct pieces, and the “builder” put the pieces together. After a time, they would swap roles. Later, they would play “freestyle” in pairs, designing and building a model space rocket, for example, which allowed them to practise compromise, express their ideas clearly and take others' ideas into account.

Children started off building quick and easy models in pairs or threes with constant adult supervision before moving on to more complex models. All the while, they played according to Lego club rules, such as: if you break something, you fix it or ask for help; if someone else is using it, ask first before taking it; no yelling - keep your hands and feet to yourself.

Within weeks, Brian had changed from a confused boy without friends to a confident child. “By the end of the study, he was much happier at school - happy to stand up for himself and go and talk to people, even if they didn't want to talk to him,” says Gail. “He made friends at Lego club, which was great, and later met up to play at their houses, which was a big deal because at school he'd not been invited to parties.”

Brian was not alone. The study found that after six months, the children who had taken part generally showed fewer signs of autistic behaviour and were more confident in the playground than those with Asperger syndrome who had not joined in the research.

Gina Owens, who led the investigation and is planning to publish a Lego manual for professional use, said it was a very positive start. But she noted that it was a small study involving high-functioning children, so it was unlikely to be successful with more severely autistic children.

“It's a step on the way to helping them to live with autism and to improve their social skills by using their strengths and not seeing autism as a disability, but as a different way of thinking,” she says.

Lego was chosen as a means for children with autism to communicate with each other because it is a highly structured toy that appeals to their interest in systems, says Professor Simon Baron-Cohen, director of the Autism Research Centre, who is also involved in the research.

So what is autism, exactly? According to the National Autistic Society, more than half a million people in the UK have it, boys are four times as likely as girls to develop the disability and a fifth of children with autism have been excluded from school. But it is also an enigmatic disability that is lifelong and has no cure. While researchers believe that its roots are partly genetic and run in the family - Brian's sister and father both have Asperger syndrome - environmental factors, such as watching a lot of television when young, have also been linked to its development.

Although the disability often used to be wrongly attributed to poor parenting, Baron-Cohen says autistic spectrum disorders are not class-specific nor down to upbringing. Rather, he describes autism as a sort of “social dyslexia” whereby people find faces hard to read rather than words. People with autism find social occasions awkward, may interpret things too literally, often cannot understand jokes and generally have obsessive tendencies.

And as with dyslexia, Baron-Cohen believes that one day people living with autism will find that they too can live with the disability more easily through special support at school and with social skills programmes such as the Lego club.

“If a child has dyslexia, it is not considered a family tragedy. They just get specialist support and teachers are given lots of information on how to help them,” says the professor, who is also vice-president of the National Autistic Society. “We're trying to do the same thing for autism, with a whole range of learning materials to help them to circumvent the problem.”

As well as Lego therapy, Professor Baron-Cohen has also developed a DVD called Transporters, which superimposes real faces on to the fronts of animated vehicles, and is available on www.thetransporters.com. Working on the success of programmes such as Thomas the Tank Engine, Transporters encourages children with autism to look at human faces via a fascination with vehicles.

The beauty of the Lego club and Transporters, says Baron-Cohen, is that they use the obsessive tendency in high-functioning autistic children to good effect. In the early days of diagnosis, children were discouraged from pursuing obsessions and encouraged to do other things to widen their knowledge. Now, professionals such as Baron-Cohen believe that they should be encouraged to take their interests to extremes: “In the past, it was believed that obsessions got in the way of learning. Now, if a child is preoccupied with a system of learning, like maths, music or Lego, we say they should take it as far as they can, because they might be the passport to a job or a friendship. So we're turning that idea on its head and using the interest or obsession to help the child,” he says.

One person who believes that her obsession saved her life is Rozagy, a 37-year-old Russian woman, who now works as a journalist, artist and composer. Having had Asperger syndrome diagnosed by Baron-Cohen in 2006, Rozagy spent the first years of her life in Voronezh, Russia, suffering serious prolonged abuse at the hands of other children. The daughter of a composer, Gennady Stavonin, Rozagy attended music school from the age of 5, after school. She practised for hours every day but could never move on to a new score. “The repetition calmed me down. Doing music probably saved me from an institution, because classical music seemed to rewire my brain and make me calmer, and after that I would start talking,” said Rozagy. “I wasn't accepted at games and was bullied from the age of 9, and then I stopped talking. I would chew my hair and rock under the table, but I got very good grades.”

At 15, the bullying became too much and she went to music college. She would hear English spoken by students and dreamt of it as her haven. At 19, she moved to England and now lives in Birmingham with her two sons and husband, Sean.

Gail Tyrrell, whose son Brian is thriving, is also a firm believer in the socialising aspect of therapies such as Lego. After gaining a renewed confidence from the club, Brian went on to his secondary school, St Bede's, Cambridge.

“He's just a different person. He has friends who come over to play Dungeons and Dragons. Some have autism and some don't, because they've learnt the social skills to deal with all sorts of people who have their own deficits,” Tyrrell says.

And her message to parents whose children have autism diagnosed is not to be too downhearted. “We should not be mourning for an imperfect child, but for an imperfect world. They are a gift. So we just need to find the skills to get them through this imperfect world.”

*Owens, G., Granader, Y., Humphrey, A. & Baron-Cohen, S. (online early). LEGO® therapy and the Social Use of Language Programme: an evaluation of two social skills interventions for children with high functioning autism and Asperger syndrome. Journal of Autism and Developmental Disorders.

Mãe relata o difícil processo de aceitação quando o filho tem autismo

Annie Lubliner Lehmann é escritora e vive no Michigan, EUA.

É autora de “The Accidental Teacher: Life Lessons From My Silent Son”.
Annie Lubliner Lehmann Para o 'New York Times'
http://g1.globo.com/Noticias/Ciencia/0,,MUL1079590-5603,00.html


Quando meu marido e eu soubemos da impossibilidade de cura do autismo de nosso filho Jonah, direcionamos nossas mentes para provar que os peritos estavam errados.

Isso foi há 22 anos.

Nós éramos jovens e ativos, e a lacuna de desenvolvimento entre Jonah, então com três anos de idade, e seus colegas, mesmo sendo óbvia, não era clara.

Sem outras crianças para cuidar na época, a ajuda a Jonah tornou-se o foco de nossas vidas. Cada troca seria uma lição, cada experiência um estudo.

Jonah se importava principalmente com comida (e ainda o faz), então eu ia até o mercado com uma lista e uma agenda, esperando usar aquela paixão para ensiná-lo conceitos essenciais. Eu seguia seu olhar e apontava cores (maçã vermelha) e formas (biscoito redondo).

Quando ele ignorava essas lições, a despeito de nossos mais animados esforços, tentávamos tudo mais que conseguíamos pensar. Nada era difícil ou caro demais. Usamos vitaminas e restringimos sua dieta. Introduzimos quadros de comunicação e organizamos terapias de integração sensorial. Fizemos com que ele usasse fones de ouvido para normalizar sua audição, e tentamos tratamentos miraculosos que nenhum ser humano racional consideraria.

Porém, cada esperança era seguida por um desapontamento. Poderíamos, da mesma forma, estar caçando borboletas com uma rede rasgada.

Todavia, quando Jonah atingiu a adolescência, estávamos esgotados e frustrados, não muito longe de onde começamos. Encaramos o espectro da falta de esperança e a abundância de questões irrespondíveis.
Os dilemas

Quão diferente era Jonah de outras crianças com autismo? Será que ele estaria melhor se não tivéssemos tentado tudo que tentamos? Ou descer da montanha-russa de intervenções significaria nossa desistência?

Embora tentássemos desesperadamente ensiná-lo, tínhamos de admitir que Jonah não era um estudante. O que queríamos que ele fizesse tinha pouco a ver com o que fazia. Se não quisesse fazer algo, ele caía no chão e se recusava a se mover.

Então decidimos recuar e começamos e captar dicas fornecidas por ele.

Fazíamos as mesmas atividades de antes, mas sem uma lista de objetivos. Até então, ele nunca tinha conseguido aproveitar os prazeres sensoriais de seus armazéns de comida sem nossos monólogos sobre o que ele estava olhando. Agora ele estava, finalmente, livre para curtir as coisas por seu próprio intento.

Não muito tempo atrás, encontrei uma cópia de “Cinderela”. Lembrei-me de quando ele tinha cinco anos, a última vez em que tentei ler para ele. Bem, não exatamente “ler”; Jonah sempre demonstrou baixa tolerância à leitura tradicional, então as histórias tinham de ser cantadas ou recitadas ritmicamente.

Enquanto eu cantava “Cinderela”, ele rolou pelo chão, aparentemente insensível à história. Ainda assim, me apeguei à ideia de envolvê-lo e deixei uma frase para que ele a completasse.

“O relógio bateu às doze horas”, eu cantei fora do tom, “ e Cinderela desceu os degraus do palácio, deixando para trás um sapatinho...”.

Ele continuou a rolar, enquanto eu esperava ouvi-lo dizer “de vidro”.

Finalmente ele terminou a sentença para mim. “De leite”, disse ele.

Eu sorri, e ainda estou sorrindo, pois Jonah havia transformado seu professor em aluno. Eu nunca mais consegui ler ou pensar na Cinderela sem enxergar um copo de leite nos degraus do palácio.

Jonah completou 25 anos no último outono, e, quando olho para ele, não consigo deixar de imaginar se os anos passados não foram algum esquema comandado pelo céu para nos dar humildade e nos ensinar o valor da aceitação. Compreender nossa incapacidade de mudá-lo mudou a nós mesmos.

Seu futuro, ao menos a maior parte dele, está definido – numa casa próxima daqui com uma equipe que se importa. Sou grata por ele ter algumas das coisas que quero para meus outros dois filhos: amor, segurança, conforto físico e acesso às suas atividades favoritas.

Ele continua sendo um homem de poucas palavras. Entretanto, embora nos tenha levado anos, finalmente aprendemos que havia algo para ouvir em seu silêncio.

Valéria

O mundo Autista

Por el Doctor Roland Bargsted Herrera

Hace un año la ONU instauró el 2 de Abril como Día Mundial del Autismo, en un afán de crear conciencia, acerca de la creciente prevalencia en el diagnóstico de los trastornos del espectro autista. Éstos han elevado sus tasa a nivel mundial, impactando en los que la padecen, en ausencia de proyectos de vida por discapacidad psíquica, altos costos sociales y desorganización familiar.

Muchas personas han luchado investigando e ideando estrategias de tratamiento. Otras, en Agrupaciones, han cautelado que la concienciación de autoridades, líderes, comunidad científica y público en general, dejen de reconocer a las personas afectadas como “ciudadanos invisibles”, promoviendo su plena integración y asegurando su lugar en nuestra sociedad a lo largo del ciclo vital.

El siglo XXI nos halla con muchos más conocimientos y experiencias, para explicar mayor sensibilidad diagnóstica que antaño e hipotetizar sobre una variedad de causas genéticas, inmunológicas y neuroquímicas cerebrales, que han sido involucradas al estudiar esta patología y que tendrán a mediano plazo implicancias terapéuticas concretas.

Pero; ¿quiénes son estos niños cuyos particulares patrones conductuales llaman la atención desde la temprana infancia? Desde los con síntomas más leves a los más severos, muestran una considerable alteración de la reciprocidad en la interacción social y la comunicación verbal y no verbal. Presentan patrones de juego repetitivos y destrezas imaginativas rígidas y restringidas. También denotan apegos anormales a objetos, son resistentes a cambios ambientales y manifiestan una respuesta exagerada a estímulos sensoriales. Habitualmente poseedores de una inteligencia normal o alta, no logran ponerla al servicio de la comunicación e interacción. Al contrario, se abocan a abordar la rutina de construir un mundo propio a espaldas de la realidad.

Sus familiares ven con incredulidad primero y desencanto después la crudeza del diagnóstico que les impone el desafío de una larga tarea que no debe admitir claudicaciones. El niño autista crece y se hace adulto. Bien guiado en su mundo paralelo aspira a alcanzar logros que años antes pudieron haber sido inimaginables. Hoy hay más recursos farmacológicos, conductuales y organizacionales, agregados a un lento retiro de actitudes discriminatorias, todo lo cual aborda un terreno más fértil para sembrar las semillas de la rehabilitación.

La estimulación cercana y constante puede revitalizar sus movimientos desdeñados y estereotipados, haciéndolos participar en actividades cotidianas constructivas. Rayos de luz, que en una atmósfera de afecto, traspasen esa mirada vacía, lejana e impenetrable , iluminando y gratificando insondables fantasías que se han alojado como privilegiados huéspedes vitalicios en su cerebro.

Actores da serie "Heroes" em campanh pelo Autismo

Los Angeles, (dpa) - El equipo de actores de la serie de televisión "Heroes" se han unido a la campaña contra el autismo en un intento de recaudar fondos contra la enfermedad a través de un concierto multitudinario.

El evento musical tendrá lugar el domingo 19 en el teatro Avalon de Hollywood y contará con la actuación del grupo Band from TV, formado por Greg Grunberg, Adrian Pasdar, James Denton, Jesse Spencer y Bob Guiney, además de la actuación especial de los compositores de la música de "Heroes" Wendy & Lisa.

En el evento se espera que haya una aparición musical sorpresa. También se hará una subasta silenciosa con objetos de arte creados por los propios intérpretes de "Heroes". Los eventos se desarrollan en abril, que es el "Mes Mundial del Autismo", y el 9 es el "Día de la Conciencia Mundial sobre el Autismo".

CONFERÊNCIA INTERNACIONAL

Realiza-se, na Universidade de Évora, nos dias 15 e 16 de Maio de 2009, a
Conferência Internacional CHANGING PRACTICES IN INCLUSIVE SCHOOLS.
(www.irisconference.uevora.pt)

Datas e respectivas taxas de inscrição:
- após 15 de Março: 200 euros;*
- Professores/Estudantes/Técnico(a) de Educação
Especial/Grupos(mínimo de 5 pessoas): desconto de 50% (não
cumulativo)

Segue, em anexo, a documentação informativa relativa a esta conferência,
organizada no âmbito do Projecto IRIS- Improvement through Research in
Inclusive Schools (128735-CP-1-2006-1-BE-COMENIUS-C2), apoiado pelo
Programa Socrates/Comenius e pelo Centro de Investigação em Educação e
Psicologia da Universidade de Évora.

Na expectativa de poder contar com o vosso apoio na divulgação deste
evento, agradecemos desde já a vossa disponibilidade, ficando ao vosso
dispor para outras informações e sugestões que considere necessárias.

Com os melhores cumprimentos,
A Comissão Organizadora

Nova residencia para pessoas com Autismo em Coimbra

In Diário de Coimbra

Residência para pessoas com autismo vai nascer em Cruz de Morouços

A Associação Portuguesa para as Perturbações do Desenvolvimento e Autismo está a angariar fundos para dar vida a um tipo de estrutura que é raro em Portugal

O Dia Mundial do Autismo foi ontem celebrado em Coimbra «de forma produtiva». Cerca de cem pessoas estiveram reunidas e ouviram a presidente da Associação Portuguesa para as Perturbações do Desenvolvimento e Autismo (APPDA) de Coimbra anunciar a aquisição de uma residência que inicialmente vai ter capacidade para acolher cinco pessoas com autismo. O local escolhido foi Cruz de Morouços, na freguesia de Santa Clara.
Estruturas habitacionais deste género são raras em Portugal. «Mas nós precisamos de saber onde vamos deixar os nossos filhos, o que será deles quando já cá não estivermos», afirmou Elsa Vieira.
A presidente da APPDA de Coimbra recordou também que o tema do autismo é um problema social, que «diz respeito a todos». Por isso a instituição lançou uma campanha de angariação de fundos e apela à solidariedade dos cidadãos de Coimbra. No final do mês está agendado um dia de actividades desportivas, que pretende concentrar um elevado número de pessoas interessadas em ajudar no projecto da residência.
A responsável da APPDA de Coimbra lembrou depois que «não é fácil tornar o mundo mais integrador e fácil de coabitar para pessoas com e sem autismo», até porque «vários projectos que se têm revelado eficazes não têm continuidade por falta de dotação financeira». No entanto, Elsa Vieira acredita que a história será diferente com o projecto da residência para pessoas com autismo, que está já numa fase avançada.

“Os políticos que respeitam as pessoas com autismo”
Durante a cerimónia várias personalidades chamaram a atenção para a necessidade de se respeitar mais as pessoas com autismo. Os políticos foram mesmo alvo de críticas duras por parte de Teresa São Miguel, uma das responsáveis da unidade de Autismo do Hospital Pediátrico de Coimbra. «Para nós é uma falta de respeito enorme os políticos quererem ofender-se mutuamente chamando autistas uns aos outros. Eu sugiro que passem a ofender-se com a palavra cefalópode ou mesmo caracol. É que eles vivem em comunidade, mas não comunicam uns com os outros», afirmou Teresa São Miguel, referindo-se também «à falta de abertura» do poder político para solucionar alguns problemas relacionados com o autismo.
Em Portugal faltam estruturas de apoio, nomeadamente na área do ensino especial. As “queixas” surgiram também da boca de pessoas que enfrentam a síndrome de desenvolvimento directamente. «Muitas vezes as instituições de ensino, privado e públicas, não têm condições para receber jovens como eu. Não devem isolar as pessoas, para que quando elas cheguem à idade adulta possam desenvolver naturalmente a actividade profissional», afirmou José Guilherme, que estuda engenharia informática no ISEC.
Numa tela foram transmitidas declarações de outro jovem. «Eu tenho autismo e por isso não sou feliz como toda a gente, porque não os entendo. Gostava de entender toda a gente para ser feliz», lamentou um rapaz de dez anos.

“Autismo também tem coisas boas”
A sessão contou com a participação da especialista Guiomar Oliveira, que recordou que o autismo «é um problema cerebral muito recente e mal entendido», que inclui «interesses repetitivos e perturbações a nível comportamental e de interacção social». Segundo estudos recentes, em Portugal uma pessoa em cada mil sofre de autismo. «Estamos a falar de uma patologia muito frequente», frisou Guiomar Oliveira.
Mas a responsável do Hospital Pediátrico de Coimbra lembrou que «o autismo também tem coisas boas», referindo-se à memória visual «extraordinária» que muitas vezes é desenvolvida. Guiomar Oliveira deu o exemplo de um rapaz de oito anos que desenhou com grande detalhe um mapa asiático (incluindo países,cursos de rios e cidades), sem ter o atlas mundial à frente.
O encontro contou também com elementos da autarquia e da DREC, que revelaram «disponibilidade para continuar a colaborar» com a APPDA.
Para além da sessão de palestras que ocupou o período da manhã (Casa Municipal da Cultura), de tarde o Dia Mundial do Autismo foi celebrado com actividades lúdicas e desportivas no Pavilhão Desportivo da Faculdade de Ciências do Desporto e Educação Física da UC.

Ligação entre a Vitamina D e Autismo

Life Extension Magazine April 2009

The Link Between Autism and Low Levels of Vitamin D
By Julius Goepp, MD
An epidemic of autism appears to be underway in the United States. According to several espected leaders in child and adult nutrition from across the United States, the current meteoricise in autism and autism spectrum disorders (ASD) may well be a direct consequence of significant vitamin D deficiencies in pregnant women and their infants.1-6 And evidence points to vitamin D deficiency as the cause of other debilitating brain conditions as well.5,7-10 This insidious deficiency is readily remedied—yet tragically often missed.
For years, Life Extension has been exploring the potentially devastating consequences of vitamin D deficiency, ranging from cardiovascular disease to cancer. Now in this report, Life Extension magazine examines the link between low levels of plasma vitamin D and autism. At the forefront of his research is Dr. John J. Cannell, executive director of the Vitamin D Council and a forensic psychiatrist at Atascadero State Hospital in California. The stunning findings suggest that rampant
vitamin D deficiency is causally related to brain dysfunction, and may be readily preventable by adequate supplementation.2-4,11

AUTISM—WHAT’S KNOWN, WHAT’S GUESSED, AND WHAT’S STILL TO BE LEARNED
Autism, or the Autistic Spectrum Disorders (ASD), involves poor social and verbal functioning accompanied by repetitive or stereotyped” behaviors.12 Symptoms begin sometime in early childhood. Just what the deficits are, when they first become
evident, and what causes them are still unknown, though both genetic and environmental factors seem to play major roles.12-14
Similarly, it seems apparent that there are many different developmental conditions that meet at least some of the definitions of autism or ASD.12

In fact, scientists agree that we actually know very little about this puzzling, multi-faceted, and tragic condition, which ranges in severity from very subtle alterations in social behavior to full-blown developmental delays that may result in placement in long-term care facilities.15-17
What is undeniable is that there has been a marked increase in the number of children being diagnosed with autism over the past two decades, not just in the US but in most industrialized nations.18-21 Some experts argue that this rise is due to increased detection by parents and physicians, as well as changing criteria and diagnostic categories.22-25 By now, however, most agree that the increase is real, and probably represents an interaction of basic genetic tendencies with something new and different in our current turn-of-the-century world.3,19-21 One report showed
the incidence of autism rose 30-fold in just seven years.25 This 2006 British study estimated that one in every 86 children met criteria for autism or ASD20—a shocking figure that alone justifies use of the term “epidemic.”3 What is causing this apparent dramatic rise in autism cases? The answer or answers have been elusive, generating heated controversy among (and between) physician groups, other scientists, and many parent groups. Considerable attention has been given to mercury and other environmental toxins that cause oxidative stress,26,27 and scientists are conducting further studies to determine if mercury in the environment and mercury preservatives in vaccines are casually linked to autism. Genetic factors are
also important, as demonstrated by high rates of occurrence in other family members, particularly in twin studies.28,29 Today’s consensus identifies both genetic and environmental factors as being relevant to the causes of autism.14,30


THE “VITAMIN D DEFICIENCY THEORY” OF AUTISM
What possible factors involving both genetics and environment could account for the dramatic change in autism rates in just 20 years? Our genes surely aren’t changing that fast, and while our environment is clearly being altered, no serious scientist
suggests that anything radical enough to cause an epidemic of brain dysfunction has taken place in the past two decades.
That’s correct, argues Dr. John Cannell, but in fact our behavior with regard to our environment has indeed undergone significant changes—changes that, because of their effects on the vitamin D neurosteroid system, can and do account for many of the
observed facts about the autism epidemic.
Dr. Cannell, a widely-published expert on vitamin D’s many-faceted effects,4,31-33 believes that these facts line up in a compelling fashion to implicate vitamin D deficiency and support the “vitamin D deficiency theory” of autism.3 Let’s follow Dr. Cannell’s line of thinking as he lines up the extraordinary evidence that we may be able to stop the autism epidemic in its tracks with simple vitamin D supplementation.
Cannell starts with the incredible increase in our understanding of vitamin D’s fundamental contri-butions to human health. Though most people (sadly including many physicians) still associate it only with bone mineralization, we now understand that the active form of vitamin D, called calcitriol, plays an equally important role as a neurosteroid hormone, directly responsible for many elements in brain development and behavior34 (other examples of neurosteroids include the sex hormones estrogen and testosterone, which have effects on the full spectrum of human behaviors). Vitamin D obtained from supplements or sunshine must undergo two biochemical processes before it becomes active. First, it is metabolized by the liver to 25-hydroxyvitamin D, the main circulating form of vitamin D and the only vitamin D metabolite that should be measured to assess vitamin D status.

Circulating 25-hydroxyvitamin D then undergoes a final biochemical step to form calcitriol, a potent neurosteroid that controls brain cell growth, and acts on receptor molecules found in brain cells from the first days of embryo formation.35 Because of these potent effects, researchers in 2001 labeled vitamin D the “neglected neurosteroid” and concluded that vitamin D deficiency “should be examined in more detail as a candidate risk factor” for neurodevelopmental disorders such as autism.36 More recently, researchers have suggested that vitamin D, acting as a neurosteroid, offers “neuroprotection, antiepileptic effects,
immunomodulation, [impact on] several brain neurotransmitter systems and hormones, as well as regulation of behaviors,”37 stressing the importance of prenatal, neonatal, and postnatal vitamin D supplementation for normal brain functioning.38
But what has happened in the past 20 years that could affect the neurosteroid function of vitamin D and relate it to the explosion of autism cases? Plenty, argues Cannell: put very simply, we have become excessively “sun-phobic” in our efforts to reduce the very real risk of skin cancers.3,39 Couple this with our decreasing natural exposure to sunlight as we’ve moved from agricultural to manufacturing to service-based activities, and you have the “perfect storm” for vitamin D deficiency.1,11 Vitamin D levels in industrialized countries are known to be much lower than those of fully sun-exposed individuals.40 Thus, our behavior has had the paradoxical
and unintended consequence of limiting our blood levels of the only known precursor of a vital neurohormone that, in turn, can influence the very organ of behavior itself, the brain.3
What is the evidence to support the vitamin D deficiency theory of autism? A recent review by Dr. Cannell provides a substantial and cogent evidence base,3 starting with the characteristics of the vitamin D neurosteroid system itself. Calcitriol acts as a “molecular switch” in brain tissue, turning on powerful genes that influence brain development. There are about 1,000 genes already known to be targets of calcitriol activity, and that number is growing fast.37,41
But unlike any other vitamin system, the bulk of human vitamin D stores come not from oral intake but from skin production under the influence of sunlight.42,43 As Dr. Cannell notes in his review, “Large populations of pregnant women putting small
amounts [of vitamin D] in their mouths—in the form of prenatal vitamins—instead of generating large amounts in their skins, is novel to human brain development;”44 since we no longer get ample sun exposure, we need to pay closer attention to how much vitamin D we do get through our mouths.
The case for significant oral supplementation is made even clearer when one considers that skin production of vitamin D is vastly more efficient than oral intake.2 In fact, just 10-40 minutes of summer sunbathing by a fair-skinned adult, notes Cannell, produces about 20,000 units of vitamin D which is presented to the systemic circulation over the next 24 hours45—to get the same amount orally a pregnant woman would have to drink 200 glasses of milk (at 100 IU per glass) or take 50 standard prenatal multivitamins (400 IU per tablet) to realize the same gains!3
But, as Cannell goes on to point out, we’ve been assiduously avoiding sun exposure for the past 20 years, dutifully following AMA guidelines.39 It is precisely during that same 20-year period that we’ve seen the rapid rise in autism rates,14 though as Dr. Cannell acknowledges, “Thousands of other environmental changes occurred during this same time and such associations, on their own, mean little.”3 But there are plenty of additional persuasive arguments supporting the theory. The calcitriol neurohormone system is different from all the body’s other steroid hormone systems. While other steroids are produced directly from the body’s natural store of cholesterol “precursor” compounds, the amount of calcitriol produced is completely dependent on having enough precursor 25-hydroxyvitamin D present in the first place. And brain levels of activated vitamin D, as Cannell observes, “directly depend on the amount of vitamin D the mother makes in her skin or puts in her mouth.”3
Cannell’s dramatic conclusion is that “Human behavior, be it the step into the sun, the step to the supplements, the step into the shade, or the step to the sunscreen, determine brain calcitriol levels.”3 In the case of the human fetus, as we’re about to see, brain calcitriol levels are directly linked to very early cognitive development, with tremendous implications for the developing baby’s brain.



WHAT YOU NEED TO KNOW: AUTISM AND VITAMIN D
- An epidemic of autism is sweeping the US and other industrialized nations.
- Causes and cures for autism have long eluded researchers, with often conflicting data making progress difficult.
- At the same time a less well-publicized but undeniable epidemic of vitamin D deficiency has been underway as a result of diminished sun exposure.
- The inspired leadership of several forward-thinking experts has finally tied the two epidemics together and may allow for the first real progress in preventing and treating autism since the epidemic began.
- Since most Americans don’t get nearly enough sunlight to meet their daily vitamin D needs, and since too much sun exposure can be dangerous, experts now recommend oral supplementation of vitamin D far in excess of standard government recommendations.
- Pregnant and nursing mothers as well as young infants need special attention to vitamin D status, since vitamin D works as a neurohormone to stimulate proper brain development and potentially reduce risk for autism.

ENCONTRO REGIONAL DA COMUNIDADE EDUCATIVA

Programa

PAIS IGUAIS,
E FILHOS ESPECIAIS - (re)pensar a Escola, (re)construir Projectos.


Local: Auditório da Fundação Portugal África - cidade do Porto.
(próximo JF Lordelo Ouro e ao lado Hotel Ipanema Park)
Data: 18 de Abril de 2009 (sábado)
Hora: 14:00h



14:00h - SESSÃO DE ABERTURA

14:30h - Formação do Painel

14:45h - Apresentação das Comunicações


Rua de Serralves, 191 PORTO
contactos 222 007 464 - 912 700 544 email: fecap@sapo.pt
16:00h - coffee-break

16:15h - Intervenção dos oradores do Painel

17:00h - Debate

18:00h - ENCERRAMENTO



A entrada é gratuita.
Aceite o convite, e venha participar connosco neste encontro.

La epidemia del autismo

Pilar G. del Burgo, Valencia
El autismo es la epidemia invisible de la sociedad. Cada vez hay más niños que nacen con esta alteración del desarrollo y cada vez son menos los recursos de Sanidad, Educación, Bienestar Social...El aumento de casos es espectacular. Hace dos décadas se diagnosticaban seis casos por cada 10.000 habitantes y ahora aparece uno por cada 150 recién nacidos.
El porqué es un enigma al que nadie sabe poner el cascabel. Una asociación de Cataluña vincula ese aumento tan alarmante en todo el mundo con la administración de la vacuna del sarampión, pues el incremento de casos coincidió con la inoculación de la vacuna, pero también se asocia a una contaminación por metales o por alimentos. Nada acreditado hasta el momento. Y aunque se diagnostica mejor, ésa no es la razón para un crecimiento desproporcionado de casos.
"Hemos salido del catálogo de enfermedades raras y con las cifras que se manejan, los pediatras afirman que la incidencia está a nivel de epidemia porque la incidencia es superior a lo esperable". Lo afirma Amparo Fabra, presidenta de la Asociación Valenciana de Padres de Autistas, portavoz infatigable y luchadora pertinaz de los derechos de esta minoría que el jueves, 2 de abril, conmemora el Día Mundial de Concienciación del Autismo.
Los padres de los niños y jóvenes autistas de la Comunitat Valenciana reivindicaron ayer a la Administración más medios para mantener el Centro de Día "Ángel Rivière", el único de la ciudad de Valencia, que surgió por iniciativa de las familias y se sostiene con el esfuerzo titánico que ellos mismos hacen todos los meses.
Casi tan invisible como la enfermedad, que se suele diagnosticar cuando el niño cumple tres años, son las ayudas: ninguno de los solicitantes ha recibido la prestación de la dependencia a pesar de que tienen el grado máximo (3), los educadores en los colegios son una especie a extinguir, las actividades de ocio y tiempo libre son impalpables y las familias ya no saben a qué pólizas ni créditos recurrir para sacar a flote el centro de día donde a diario acuden veinte niños con autismo.
La historia de Belén y Alberto es, como casi todas la de este trastorno del desarrollo, un relato vivo de amor. El niño nació prematuro y permaneció 3 meses en la incubadora. A los tres meses de tenerle en brazos, los padres observaron que el pequeñín era hipotónico y que no sonreía. A los 18 meses, Alberto empezó con atención temprana.
Retraso madurativo
"Ya estábamos al acecho porque vimos que tenía un retraso madurativo, pero fue a los tres años cuando por primera vez me dijeron la palabra autismo", declara Belén que recuerda que en aquel momento tanto ella como su marido se quedaron atónitos: "Te quedas parado porque esperas que sea un retraso madurativo que se iguala con el tiempo, pero cuando te dicen eso...".
Confiesa Belén que cuando se tiene un hijo autista nunca se deja de pelear. Alberto que tiene seis años y medio tiene una edad motora de un niño de tres y una comprensión cognitiva de cinco. Va a un colegio ordinario y cuenta con el apoyo de un logopeda, una pedagoga y adaptación curricular.
"Una vez lo superas chocas con la falta de ayudas; ahora cuando cumpla los 7 años se acabará la subvención de la Conselleria de Sanidad de las cinco horas semanales de terapia motora que se la dan en un gabinete y esa es otra de las cosas por las que tenemos que pelear porque muchos niños la necesitan a lo largo de su vida", expresa Belén.
La falta de medios perjudica a los niños
"Si la Conselleria de Educación tiene que poner un educador, no lo pone porque no tiene medios. Hablan de la integración a nivel escolar pero luego no existe; los perjudicados son los niños y nosotros que nos sentimos muy angustiados porque siempre tenemos que estar peleando para conseguir lo que es un derecho. Esto es lo que opina Belén, la madre de Alberto, miembro de la Asociación Valenciana de Padres de Autistas que para celebrar el Día Internacional ha elegido un lema muy plástico: "mi amigo especial".
Un año es el tiempo aproximado que una familia tarda en saber que su hijo está afectado por este tipo de trastorno desde que va por primera vez al neuropediatra hasta que todas las pruebas concluyen lo mismo: su hijo no tiene alteraciones neurológicas. Es cuando el autismo asoma la cabeza