sexta-feira, 31 de julho de 2009

UNIR PARA AJUDAR

Cidade de Castelo Branco a Atalaia do Campo


A ideia é ajudar.

São 40 Km´s, ligando a Cidade de Castelo Branco (partida em frente à delegação da RTP) ao Estádio Municipal de Atalaia do Campo, em Cadeira de Rodas, Cicloturismo e Caminhada.

Dia 4 de Outubro (Domingo) uma iniciativa a favor da APPDA-Norte (Associação Portuguesa para as Perturbações do Desenvolvimento e Autismo), com sede em Vila Nova de Gaia e que em 2009 comemora 25 anos.

Juntos, avós, pais, filhos e netos, podemos passar uma manhã divertida, entre família e amigos, nesta grande actividade de Solidariedade.

Mais informações e inscrições:
Álvaro Bastos
Telem. nº 968814204
969027650


ESPERAMOS POR TI!



N.B. PARTICIPA E DIVULGA A INICIATIVA A MUITOS AMIGOS

sexta-feira, 24 de julho de 2009

Um dia muio importante................

Hello,

This afternoon, I will be joining President Obama and the leadership of the cross-disability community at a special ceremony at the White House where the President will be announcing the intention of the United States to become a signatory to the UN Convention on Disability Rights. The treaty will enshrine in international law a wide array of rights, some of which are present in the United States already, such as the right to reasonable accommodation, as well as others, such as the right to community living supports as opposed to having only segregated options available, that we still have to fight for in our own country. You can read the treaty yourself by going to http://www.un.org/disabilities/default.asp?id=259. This is an important day for our community and I believe the President should be applauded for taking this important step.

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

"Classificados" - Procuram funcionarios com Autismo

En Dinamarca se encuentra la primera empresa dedicada a emplear a personas que padecen autismo y ha sido tan exitosa que pronto abrirá una sucursal en Escocia.


Se calcula que 1% de la población padece alguna forma de autismo.
Specialisterne es una firma de computación creada por un hombre cuyo hijo de tres años fue diagnosticado con autismo o Trastornos del Espectro Autista (TEA), término como el que se denomina actualmente al conjunto de síndromes que resultan en el autismo.

Thorkil Sonne se preguntó un día porqué tantos adolescentes y adultos inteligentes, como su propio hijo, no podían usar su energía y habilidades especiales en el sector empresarial.

Tras años de investigación sobre qué era lo que la gente con TEA quería y podía hacer mejor, Sonne fundó su empresa de análisis de software, donde 75% de los empleados -unas 40 personas- tienen alguna forma del espectro autista.

En los próximos meses espera reclutar a otros 50 empleados para su nueva planta en Glasgow.

Invisible
Los trastornos autistas afectan a cerca del 1% de la población.

Según la National Autistic Society (NAS, por sus siglas en inglés) (Sociedad Autística Nacional del Reino Unido) la gente con TEA suele afirmar que un empleo es el factor que realmente mejoraría su vida.

Pasé mucho tiempo leyendo sobre los trastornos autistas, pero había demasiados libros describiendo lo que la gente no podía hacer
Thorkil Sonne
Y sin embargo, sondeos llevados a cabo en Europa revelan que 62% de adultos con autismo no tienen ningún tipo de trabajo.

Tal como expresa Sonne, los sistemas y servicios de salud en Europa funcionan bien con las discapacidades "visibles", pero carecen de experiencia y conocimiento cuando se trata de enfrentar las discapacidades "invisibles" como los TEA.

El empresario, que fue uno de los presidentes regionales de la organización danesa Autism Denmark, pudo conocer a muchos adolescentes y adultos con TEA.

Los autistas tienen dificultades en la interacción social y las incertidumbres, pero sobresalen en tareas repetitivas que requieren una alta capacidad de precisión.

Así que Sonne se dio cuenta de que probar nuevos programas de software era una labor idónea para estas personas.

Fuente inexplorada
Soeren Ljunghan, de 42 años, tiene una forma de autismo llamada Síndrome de Asperger y es uno de los empleados de Specialisterne.


Sonne se involucró en el autismo cuando su hijo fue diagnosticado.
Tal como le explicó a la BBC, su enfermedad le permite concentrarse y ser persistente, pero debido a sus dificultades sociales pasó mucho tiempo desempleado.

"Era un infierno. Asistía a entrevistas de empleo pero siempre quedaba en segundo lugar", dice.

"Era un proceso muy estresante y comencé a cuestionarme si algún día podría volver a trabajar".

Ahora, en Specialisterne Soeren trabaja 25 horas a la semana probando software.

"Me gusta el trabajo porque sé lo que puedo esperar de cada día", dice.

Por su parte, Throkil Sonne afirma que con el tiempo ha sabido reconocer que sus empleados con autismo necesitan un ambiente tranquilo y rutinas fijas.

Y con las condiciones adecuadas, dice, estas personas sobresalen en las tareas técnicas.

"Pasé mucho tiempo leyendo sobre los trastornos autistas -afirma Sonne- pero había demasiados libros describiendo lo que la gente no podía hacer".

"Y sin embargo, mis empleados hasta son capaces de ir y trabajar en las instalaciones de nuestros clientes".

"Estoy muy orgulloso. No pensé que sería posible lograrlo cuando empecé la compañía hace cinco años", afirma Sonne.

La experiencia de Dinamarca ha demostrado que los trabajadores autistas son una "fuente sin explotar", y darles empleo, afirman los expertos, sería una forma ideal de ayudarlos a enriquecer sus vidas.

quinta-feira, 23 de julho de 2009

AUTISM AS ACADEMIC PARADIGM

By TYLER COWEN

Thinking back on history, maybe you've wondered how it was that American
colleges and universities could ever have contributed to racist discourse.
But Princeton and many other institutions kept out Jews, and "academic"
defenses of slavery, segregation, and eugenics were commonplace until
broader social changes rendered such views unacceptable.

The sad truth is that dehumanizing ideologies are still with us in the
modern university, although they take very different forms. Prime examples
include the unacceptable ways we sometimes talk and think about the autism
spectrum.

A few years ago, Michael L. Ganz, who teaches at the Harvard School of
Public Health, published an essay titled "Costs of Autism in the United
States." Nowhere in the essay does he consider whether autistic people have
brought benefits to the human race. Can you imagine a comparable essay
titled: "Costs of Native Americans"? Ganz might think that autism is
strictly a disease, but he never mentions or rebuts the fact that a great
number of autistics reject this view and find it insulting.

David Bainbridge is a veterinary anatomist at the University of Cambridge.
In 2008 he published a book with Harvard University Press, *Beyond the
Zonules of Zinn: A Fantastic Journey Through Your Brain.* In the book he
claimed that autistics were lacking in the quality of human alertness, and
he compared their cognitive faculties unfavorably with those of
brain-damaged monkeys. Deborah R. Barnbaum, a philosopher at Kent State
University, wrote a book (ironically titled *The Ethics of Autism,* Indiana
University Press, 2008) pondering the philosophical implications of the
supposed fact that autistics cannot understand the mental lives of other
people; yet this result has not held up in experiments and it also could be
refuted by a few simple conversations with autistic people.

The point is not to focus blame on these particular individuals, as they
have soaked up common ideas, attitudes, and presuppositions from a broader
setting. It's quite possible that these writers are all "nice people" in the
usual sense, but still they have not developed any sense of revulsion or
hesitancy at such portraits of other human beings. The sorry truth is that
until we are made very consciously aware of the implications of our words,
it is all too easy to slip into bad habits and harmful rhetoric, even in
politically correct 2009.

I've cited some of the more obvious examples, but the underlying biases are
much more deeply rooted. A lot of people at colleges are aware of dealing
with autism (and Asperger's syndrome; I will refer generally to the autism
spectrum) in their "special needs" programs. The more complex reality is
that there is a lot more autism in higher education than most of us realize.
It's not just "special needs" students but also our valedictorians, our
faculty members, and yes — sometimes — our administrators.

That last sentence is not some kind of cheap laugh line about the many
dysfunctional features of higher education. Autism is often described as a
disease or a plague, but when it comes to the American college or
university, autism is often a competitive advantage rather than a problem to
be solved. One reason American academe is so strong is because it mobilizes
the strengths and talents of people on the autistic spectrum so effectively.
In spite of some of the harmful rhetoric, the on-the-ground reality is that
autistics have been very good for colleges, and colleges have been very good
for autistics.

The economist and Nobel laureate Vernon L. Smith, a former colleague of
mine, is one of the best-known examples of a high achiever on the autism
spectrum. Vernon, in *Discovery: A Memoir,* attributes his extreme focus,
his attention to detail, and his scholarly persistence to his connections to
the autism spectrum. Richard Borcherds, winner of the 1998 Fields Medal in
mathematics, has been diagnosed as having Asperger's. Temple Grandin, who
teaches animal science at Colorado State University, is a brilliant autistic
woman whose ideas have revolutionized how American slaughterhouses treat
animals. There are very likely many more examples, albeit unrecognized ones.
Simon Baron-Cohen, a leading autism researcher at the University of
Cambridge, argues that autistic high achievers are far more common than most
people realize, most of all in mathematics and engineering. He stresses
systematizing behavior as an important cognitive strength of autistics.

In spite of some of the common rhetoric, each year specialists are teaching
us more about the cognitive strengths of the autism spectrum. In the 1960s,
it was a common view that, except for a few savants, most autistic people
were intellectually disabled ("mentally retarded" was the less than
felicitous term), and to some extent this stereotype persists today. But a
growing body of work pinpoints areas where autistics outperform
nonautistics.

A partial list notes that autistics have, on average, superior pitch
perception and other musical abilities, they are better at noticing details
in patterns, they have better visual acuity, they are less likely to be
fooled by optical illusions, they are more likely to fit some canons of
economic rationality, they solve many puzzles at a much faster rate, and
they are less likely to have false memories of particular kinds. Autistics
also have, to varying degrees, strong or even extreme abilities to memorize,
perform operations with codes and ciphers, perform calculations in their
head, or excel in many other specialized cognitive tasks. The savants, while
they are outliers, also reflect cognitive strengths found in autistics more
generally. A recent investigation found, with conservative methods, that
about one-third of autistics may have exceptional skills or savantlike
abilities.

Autistic people usually have a superior desire and talent for assembling and
ordering information. Especially when they are given appropriate access to
opportunities and materials, autistics live the ideal of self-education,
often to an extreme. In my new book, *Create Your Own Economy,* I refer to
autistics as the "infovores" of modern society and I argue that along many
dimensions we as a society are working hard to mimic their abilities at
ordering and processing information. Autism is a topic that anyone
interested in education should be reading and thinking about.

It turns out that the American university is an environment especially
conducive to autistics. Many autistics are disadvantaged or overwhelmed by
processing particular stimuli from the outside world and thus are subject to
perceptual overload as a result. For some autistics, that is debilitating,
but for many others it is either manageable or a problem they can work
around. The result is that many autistics prefer stable environments, the
ability to choose their own hours and work at home, and the ability to work
on focused projects for long periods of time.

Does that sound familiar? The modern college or university is often ideal or
at least relatively good at providing those kinds of environments. While
there is plenty of discrimination against autistics, most people in American
universities are so blind to the notion of high-achieving autistics that one
prejudice cancels out the other, to the benefit of many of the autistics in
universities.

Autistics also tend to be extremely good at a subset of cognitive tasks and
markedly poor or impaired at others; they are the ultimate beneficiaries
from Adam Smith's notion of the division of labor. Academic specialization
makes it easier for such people to win fame.

I don't want to push you too much in the direction of stereotypes such as
"the absent-minded professor." Some people fitting that profile may well be
on the autism spectrum, but the spectrum also includes beautiful women with
charming smiles, enthusiastic extroverts, people who cannot produce
meaningful speech, and people who make very clear and effective public
speeches from memory alone. Tony Attwood, an Australian psychologist with
extensive diagnostic experience, believes that acting is a profession
well-represented on the autistic spectrum. The point is not to convince you
of any single profile of autistics or to replace your old stereotypes with
new ones. Rather, we keep on learning that the diversity of autistics is
greater than we used to think.

There is no doubt that many autistic people have very troubled lives and are
unable to move into positions of high achievement or even contend for them.
Problems, such as very obvious social atypicalities, acquired social
anxiety, or various perceptual hypersensitivities — found among many but by
no means all autistics — may hamper their ability to obtain ordinary jobs or
rise in social status.

Current prejudices are based on at least two mistakes. First, too often
autism is defined as a series of impairments or life failures, thereby
ruling out high achievers. It is more scientific and also more ethical to
have a broader definition of autism, based on differing and atypical methods
for processing information and other cognitive and biologically defined
markers. That way we do not label autistics as necessary failures, but
rather we recognize a great diversity of outcomes including successes.

Second, diagnosed autistics are very often those people who encounter major
problems in life. Most higher-status autistics don't ever show up for
diagnosis or intervention, and many of them have no great need for it or no
real awareness of it, or, even if they are having difficulties, they fear
the stigma of a diagnosis. Common samples of autistics, as you find studied
in a typical research paper, show many more problems, and many fewer
successes, than is most likely the case in a true population sample of
autistics. In other words, there is enormous selection bias. Research on
autism is only starting to confront that problem.

We're also learning that a lot of the stereotypes about autistics are false
or at least misleading. It's been suggested, for instance, that autistics
don't care much about other people, or that autistics lack genuine emotions
or are incapable of empathy. The more likely truth is that autistics and
nonautistics do not always understand each other very well. It's odd that
the people who make this charge so often, in the very act of doing so, fail
to show much empathy for autistics or to recognize their rich emotional
lives. Even when the cognitive capabilities of autistics are recognized —
most commonly in the cases of savants — it is too often accompanied by a
clichéd and inaccurate picture of a cold, robotic, or less than human
personality.

The relevance of the autism spectrum for higher education isn't just about
particular individuals on the autistic spectrum. The very nature of higher
education shows how much we, often without knowing it, hold up autistic
cognitive profiles as a partial educational ideal. In "special needs"
education, there is plenty of effort to teach the skills of the nonautistic
to the autistic, but in the regular classroom we are often doing the
opposite. I view higher (and lower) education as teaching people to be more
autistic in many of their basic cognitive skills. Again, some key cognitive
features of autism are the ability, and desire, to process lots of
information across widely different scales, from tiny details to overarching
structures; focus and the mental ordering of that information; a relatively
high degree of scientific objectivity; and the presence of some highly
specialized cognitive strengths, even if they are accompanied by some areas
of poor performance. To an educator a lot of that list ought to sound pretty
good.

Another way of putting it is to note that all students are special-needs
students requiring lots of help. The nonautistic students do not represent
some ideal point that everyone is striving to attain, but rather both
autistic and nonautistic students are trying to learn the specialized skills
of the other group, as well as perfecting their own skills.

When it comes to public and academic discourse, it's not just our
understanding of autism that is up for grabs. Human beings experience a
variety of neurodevelopmental paths, with ADHD (attention-deficit
hyperactivity disorder) as another prominent example. We need to be careful
about what we label as a disorder. When it comes to ADHD, for instance,
there is growing evidence that ADHD individuals achieve very good outcomes
by normal social standards. The popular-culture stereotype is of an ADHD
(often "ADD") person superficially clicking from one channel or Web site to
the next. An alternative vision is that many ADHD individuals adapt and end
up using their cognitive profile to propel themselves from learning one
piece of information to the next, and in fact end up better educated and
maybe better situated to deal with the social world as well. Similarly, one
study found that dyslexic people made better entrepreneurs on average,
because they are used to the idea of having to delegate some tasks rather
than trying to micromanage everything.

In many areas of human neurodiversity, including autism, we still don't know
the answers to many basic questions. There is still not even agreement on
the basic definitions of autism, Asperger's, and related concepts. In the
meantime we are applying lots of stereotypes and negative descriptions to
autistics that we would not dream of using to describe racial or ethnic
groups. It's high time that colleges and universities got out in the lead to
fight these common prejudices. The rhetoric coming out of higher education
needs to match up to the reality of higher education as a common avocation
for autistic people.

We are still searching for appropriate metaphors and language to describe
and explain human neurodiversity. For instance, we've moved beyond viewing
autism as the result of "refrigerator mothers" — cold, distant — as was most
visibly suggested by Bruno Bettelheim in the 1960s. We're just starting to
move beyond defining it as a "series of impairments." If we call autism a
"disorder," is that being humane and offering sympathy and aid, or is it
judgmental in a way that stereotypes, lowers expectations, and ignores
variation in outcomes?

But if it is not correct to speak of a disorder, what exactly is the
sensible language and what are the accompanying conceptual frames? The
commonly heard distinction between "high functioning" and "low functioning"
ignores extreme variations in the skills of the autistic individual, and it
also seems to classify a group of human beings as somehow unfit. When it
comes to discourse on the autism spectrum, we should be humane, respect
human difference and individuality, respect the need for possible
assistance, and recognize the diversity within the spectrum, and all that
without assuming that nonautistic ways of viewing the world are always the
right ones.

The common public perception is that autism is about sick or diseased
children, and it is up to the academic community to help correct that
picture. If we look at the data, it seems easy to find lots of autistic
children yet relatively hard, at least by the standards of common public
perception, to find a commensurate number of autistic adults. For instance a
typical figure suggests that the United States has about 500,000 autistic
children, for a prevalence in the range of 1 in 150. That would mean that
the United States also has 1.5 million autistic adults. (Those numbers are
very rough approximations and still being debated.)

My belief is that the United States does in fact have more than one million
autistic adults. But if there are so many autistic adults, the obvious
question is: Where are they? Who are they? Are they all locked up in
institutions? It is sometimes suggested that there must be a very recent
"epidemic" of autism. But the epidemiological measurements of autism
prevalence — if we acknowledge deliberate changes in diagnostic criteria,
awareness, service availability, case-finding methods, and so on over time —
do not indicate large unexplained increases. You could argue for a gradual
increase in the rate of autism, as existing evidence cannot rule out all
changes (I think the rate is more likely constant over time), but still the
growth would be so incremental that, again, a sensible estimate would be
more than a million autistic adults in the United States.

It's a little tricky to talk or write about the autistics who may work in
your institution. If you work at a college or university, there is a good
chance you are interacting with people on the autism spectrum on a very
regular basis. Maybe the reaction of the reader is to draw up a mental list
of people in the workplace and start applying various stereotypes to them.
Maybe you'll be on the lookout at the next dean's meeting for people who
exhibit "autistic traits" and then gossip about those perceptions to your
friends.

That's human nature, but I'm suggesting an alternative tack. Embrace
individualism. Question your stereotypes. Maybe even look in the mirror.
When you're done, it's likely that you'll see far more talent, in far more
unorthodox varieties, than you expected.

*Tyler Cowen is a professor of economics at George Mason University who
blogs at http://www.marginalrevolution.com and writes for* The New York
Times, Money, *and other publications. This essay is adapted from his new
book from Dutton,* Create Your Own Economy: The Path to Prosperity in a
Disordered World.

http://chronicle.com
Section: The Chronicle Review


Tradução:


O AUTISMO ENQUANTO PARADIGMA ACADÉMICO

Por TYLER COWEN

Revendo a história, talvez já se tenham perguntado como é que as universidades americanas podem ter contribuido para o discurso racista. Mas Princeton e muitas outras instituições mantiveram os judeus afastados e os discursos "académicos" a favor da escravatura, da segregação e da eugenia eram comuns até alterações sociais mais abrangentes tornarem essas perspectivas inaceitáveis.
A triste verdade é que as ideologias desumanas ainda continuam connosco na universidade moderna, apesar de tomarem formas muito diferentes. Os principais exemplos incluem o modo inaceitável como algumas vezes pensamos e falamos do espectro do autismo.
Há alguns anos, Michael L. Ganz, que lecciona na Escola de Saúde Pública de Harvard, publicou um ensaio intitulado "Costs of Autism in the United States." (Custos do Autismo nos Estados Unidos). Em nenhuma parte do ensaio se pondera se as pessoas com autismo trouxeram benefícios ao ser humano. São capazes de imaginar um ensaio equivalente intitulado: "Costs of Native Americans" (Custos dos nativos americanos)? Ganz pensa, provavelmente, que o autismo é somente uma doença, mas nunca menciona ou refuta o facto de um grande número de autistas rejeitar esta perspectiva e a achar insultuosa.
David Bainbridge é um veterinário anatomista na Universdade de Cambridge. Em 2008 publicou um livro através da Harvard University Press, *Beyond the Zonules of Zinn: A Fantastic Journey Through Your Brain.* (Para além das zónulas de Zinn: uma viagem fantástica pelo nosso cérebro*). No livro ele afirma que os autistas têm um deficiente estado de alerta humano e compara de uma forma depreciativa as suas faculdades cognitivas com as de macacos com cérebros deficientes. Deborah R. Barnbaum, uma filósofa da Kent State University, escreveu um livro (ironicamente intitulado *The Ethics of Autism,* - A ética do autismo- Indiana University Press, 2008) no qual pondera as implicações filosóficas do suposto facto dos autistas não serem capazes de compreender as vidas mentais de outras pessoas; no entanto, este resultado não foi testado através de experimentação e também poderia ser refutado com algumas meras conversas com pessoas com autismo.
A questão não é apontar a culpa a estas pessoas especificamente, pois elas absorveram ideias, atitudes e pré-suposições comuns vindas de um universo mais abrangente. É muito provável que estes escritores sejam todos "boas pessoas", como habitualmente se diz, mas, ainda assim, não desenvolveram nenhum sentido de revolta ou hesitação perante tais descrições de outros seres humanos. A triste verdade é que até tomarmos real consciência das implicações das nossas palavras, será muito fácil incorrer em maus hábitos e numa retórica ofensiva, mesmo no ano politicamente correcto de 2009.
Citei alguns dos exemplos mais óbvios, mas os preconceitos que lhes são subjacentes estão bastante mais enraizados. Muitas pessoas em universidades estão familiarizadas com o autismo (e a síndrome de Asperger; referir-me-ei genericamente ao espectro do autismo) através dos seus programas de "necessidades especiais". A realidade mais complexa é que há muito mais autismo no ensino superior do que a maioria de nós imagina. Não se trata apenas de alunos com "necessidades especiais", mas também dos nossos melhores alunos, dos membros da nossa faculdade e, sim, às vezes, dos nossos administradores.
Esta última frase não pretende ser nenhum tipo de piada grosseira sobre os múltiplos aspectos disfuncionais do ensino superior.
O autismo é frequentemente descrito como uma doença ou uma praga, mas no que diz respeito às faculdades americanas, o autismo é frequentemente uma vantagem competitiva e não um problema a resolver. Uma das razões pelas quais a academia americana é tão forte é a sua capacidade de mobilizar de uma forma tão eficaz a força e o talento de pessoas no espectro do autismo. Apesar de alguma retórica ofensiva, o que se verifica na realidade é que os autistas têm sido muito bons para as universidades e as universidades têm sido muito boas para os autistas.
O economista e prémio Nobel Vernon L. Smith, antigo colega meu, é um dos mais conhecidos exemplos de alguém no espectro do autismo com muito sucesso. Vernon, em *Discovery: A Memoir,* atribui a sua enorme capacidade de concentração, a sua atenção aos detalhes e a sua persistência académica às suas ligações ao espectro do autismo. Richard Borcherds, vencedor do prémio 1998 Fields Medal em matemática foi diagnosticado com Síndrome de Asperger. Temple Grandin, que lecciona ciência animal na Colorado State University, é uma mulher autista brilhante, cujas ideias revolucionaram o modo como os matadouros americanos tratam os animais. Há muitos outros exemplos idênticos, apesar de muitos não serem reconhecidos. Simon Baron-Cohen, um investigador de renome na área do autismo na Universidade de Cambridge, argumenta que os autistas de sucesso são muito mais comuns do que a maior parte das pessoas imagina, a maioria deles nas áreas da matemática e da engenharia. Ele realça o comportamento sistemático como uma importante mais-valia cognitiva dos autistas.
Apesar da retórica corrente, todos os anos os especialistas ensinam-nos mais acerca da capacidade cognitiva do espectro do autismo. Nos anos 60, era vulgar achar-se que, fora alguns portadores da Síndrome de Savant, a maioria das pessoas com autismo eram mentalmente incapacitadas ("deficientes mentais" era o termo, nada apropriado), e este estereótipo ainda persiste nos nossos dias. Mas um crescente corpo de trabalho assinala áreas onde os autistas ultrapassam os não autistas.
Uma lista parcial identifica por parte dos autistas, de um modo geral, uma elevada percepção acústica e outras capacidades musicais, uma maior capacidade de identificar detalhes em padrões, uma acuidade visual mais apurada, menor possibilidade de serem induzidos em ilusões ópticas, maior probabilidade de encaixar em alguns cânones de racionalidade económica, capacidade de completarem muitos puzzles mais rapidamente e menor probabilidade de terem falsas memórias de tipos específicos. Os autistas têm também, em graus variados, uma grande ou mesmo extrema capacidade de memorização e de execução de operações com códigos e cifras, de fazer cálculos mentais ou de se exceder em muitas outras tarefas cognitivas especializadas. Os portadores da Síndrome de Savant, apesar de não incluídos, também reflectem capacidades cognitivas encontradas nos autistas de uma forma mais generalizada. Uma investigação recente apurou, com métodos conservativos, que cerca de um terço dos autistas podem ter capacidades excepcionais ou capacidades idênticas às da Síndrome de Savant.
Os autistas têm, habitualmente, um especial desejo e uma particular capacidade para juntar e organizar informação. Especialmente quando lhes é fornecido acesso adequado às oportunidades e aos materiais, os autistas vivem o ideal do auto-didacta, frequentemente levado ao extremo. No meu novo livro, *Create Your Own Economy,* (Crie a sua própria economia) refiro-me aos autistas como os "infovores" (grandes consumidores de informação) da sociedade moderna e argumento que, em muitas dimensões, nós, enquanto sociedade, tentamos imitar as suas capacidades quanto à organização e ao processamento da informação. O autismo é um tópico sobre o qual qualquer pessoa interessada em educação devia ler e reflectir.
A universidade americana acaba por ser um ambiente particularmente favorável aos autistas. Muitos autistas têm a desvantagem ou sentem-se assoberbados pela necessidade de processar estímulos específicos do mundo exterior e sofrem isso como uma sobrecarga de percepções. Para alguns autistas esse é um factor de enfraquecimento, mas muitos outros adquirem a capacidade de o gerir ou de o transformar num problema contornável. Em conclusão, muitos autistas preferem ambientes estáveis, a possibilidade de escolher os seus próprios horários e de trabalhar em casa e a possibilidade de trabalhar em projectos nos quais se possam concentrar por longos períodos de tempo.
Isto parece-vos familiar? A universidade moderna é frequentemente ideal ou, pelo menos, relativamente boa a providenciar este tipo de condições. Apesar de haver muita discriminação contra os autistas, a maioria das pessoas nas universidades americanas são tão desconhecedoras da noção de autistas de sucesso, que um preconceito acaba por cancelar o outro, em benefício de muitos dos autistas que se encontram nas universidades.
Os autistas também tendem a ser extremamente bons num subconjunto de tarefas cognitivas e significativamente fracos ou incapazes noutros; são os beneficiários finais da noção da divisão do trabalho de Adam Smith. A especialização académica faz com que seja mais fácil a estas pessoas passarem a ser famosas.
Não quero empurrar-vos demasiado na direcção de estereótipos como "o professor absorto". Algumas pessoas que encaixam nesse perfil podem estar no espectro do autismo, mas o espectro também inclui mulheres lindas, com sorrisos encantadores, extrovertidos entusiastas, pessoas que não são capazes de proferir um discurso com sentido e pessoas que proferem, só de memória, discursos públicos muito claros e eficazes. Tony Attwood, um psicólogo australiano com uma vasta experiência em diagnóstico, acredita que a profissão de actor/actriz está bastante bem
representada no espectro do autismo. Procuro não vos convencer de nenhum perfil único de autistas, nem substituir os nossos velhos estereótipos por novos. Em vez disso continuamos a aprender que a diversidade de autistas é maior do que pensávamos.
Não há dúvida de que muitas pessoas com autismo têm vidas muito atribuladas e não são capazes de atingir posições de sucesso, nem sequer de lutar por elas. Dificuldades, como atipicidades sociais muito evidentes, ansiedade social adquirida, ou várias hipersensibilidades perceptivas — que podemos encontrar em muitos, mas de modo algum em todos os autistas — são susceptíveis de coarctar a sua capacidade de conquistar postos de trabalhos usuais ou de subir no estatuto social.
Os preconceitos actuais baseiam-se em, pelo menos, dois erros. Em primeiro lugar, o autismo é definido demasiado frequentemente como uma série de impedimentos ou fracassos de vida, influenciando os indivíduos com grandes capacidades. É mais científico e também mais ético adoptar uma definição de autismo mais abrangente, baseada em métodos alternativos e atípicos de processamento de informação e outros marcadores definidos cognitiva e biologicamente. Desse modo, não rotulamos os autistas necessariamente como fracassos, mas antes reconhecemos uma grande diversidade de saídas, incluindo saídas de sucesso.
Em segundo lugar, os autistas diagnosticados são, muito frequentemente, aquelas pessoas que se deparam com grandes problemas na sua vida. A maioria dos autistas de estatuto mais elevado nem sequer procura um diagnóstico ou uma intervenção e muitos deles não têm grande necessidade disso ou consciência desse facto, ou, mesmo que estejam com dificuldades, têm medo do estigma de um diagnóstico. Amostras comuns de autistas, como poderão encontrar como objecto de estudo num típico relatório de investigação, mostram muito mais problemas e muito menos sucessos do que provavelmente acontece numa verdadeira amostra de população de autistas. Por outras palavras, há um enorme preconceito na selecção. A investigação sobre o autismo só agora começa a confrontar esse problema.
Também temos aprendido que muitos dos estereótipos sobre os autistas são falsos ou, pelo menos, viciados. Sugere-se, por exemplo, que os autistas não se preocupam muito com os outros, ou que são desprovidos de emoções genuínas ou incapazes de empatia. O que, certamente, acontece é que os autistas e os não autistas nem sempre se compreendem uns aos outros muito bem. É estranho que as pessoas que fazem esta acusação pequem, nesse próprio acto, por não serem capazes de demonstrar grande empatia pelos autistas ou de reconhecer as suas vidas emocionalmente ricas. Mesmo quando se reconhece as capacidades cognitivas dos autistas - mais habitualmente nos casos dos portadores da Síndrome de Savant - esse reconhecimento é muito frequentemente acompanhado de uma imagem estereotipada e imprecisa de uma personalidade fria, robotizada e sub-humana.
A relevância do espectro do autismo para o ensino superior não se relaciona exclusivamente com os vários indivíduos no espectro do autismo. A própria natureza do ensino superior demonstra o quanto nós, frequentemente sem termos consciência disso, adoptamos perfis cognitivos autistas como um ideal parcial de ensino. No ensino para "necessidades especiais" é feito um grande esforço para ensinar as capacidades dos não autistas aos autistas, mas numa sala de aula vulgar fazemos frequentemente o contrário. Eu vejo o ensino superior (e não superior) como ensinar pessoas a serem mais autistas em muitas das suas capacidades cognitivas básicas. Uma vez mais, algumas características cognitivas chave do autismo são a capacidade e a vontade de processar muita informação em escalas muito diversas, desde o pormenor às estruturas abrangentes, a concentração e a organização mental dessa informação, um grau relativamente elevado de objectividade científica e a presença de algumas capacidades cognitivas altamente especializadas, mesmo se acompanhadas por algumas áreas de fraco desempenho. Para um educador muito do que faz parte desta lista deve soar bastante bem.
Noutro ponto de vista, também podemos reparar que todos os alunos são alunos com necessidades especiais e que necessitam de muita ajuda. Os alunos não autistas não representam um ponto ideal que toda a gente tenta atingir, mas antes ambos os alunos, autistas e não autistas, tentam aprender as capacidades especializadas do outro grupo e aperfeiçoar as suas próprias capacidades.
No que diz respeito ao discurso público e académico, não é só a nossa compreensão do autismo que falha. Os seres humanos experimentam uma variedade de percursos neurodesenvolvimentais, sendo o DDAH (défice de atenção com hiperactividade) outro exemplo destacado. É preciso ter cuidado com o que rotulamos como distúrbio. No que respeita ao DDAH, por exemplo, está cada vez mais comprovado que os indivíduos com DDAH têm muito bom desempenho nos padrões sociais normais. O estereótipo da cultura popular é o de uma pessoa com DDAH (frequentemente com DDA) que vagueia superficialmente de um canal de televisão ou website para outro. Numa visão alternativa, muitos indivíduos com DDAH acabam por se adaptar e por utilizar o seu perfil cognitivo como um auto-impulso de uma fonte de informação para outra, ficando, no fim, com uma melhor formação e também numa posição mais favorável para lidar com o mundo social. Do mesmo modo um estudo constatou que as pessoas disléxicas eram, em média, melhores empreendedores, pelo facto de estarem habituados à ideia de terem de delegar algumas tarefas, em vez de tentar microgerir tudo.
Em muitas áreas da neurodiversidade humana, incluindo o autismo, ainda não sabemos as respostas para muitas questões básicas. Nem sequer há acordo na definição básica do autismo, da Síndrome de Asperger e de conceitos relacionados. Entretanto vamos aplicando aos autistas muitos estereótipos e descrições negativas, que não sonharíamos usar para descrever grupos raciais ou étnicos Está na altura das universidades liderarem o combate a estes preconceitos tão habituais. A retórica proveniente do ensino superior tem de igualar a realidade do ensino superior enquanto ocupação regular de pessoas com autismo.
Ainda estamos à procura de metáforas e linguagem adequadas para descrever e explicar a neurodiversidade humana. Por exemplo, já ultrapassamos a ideia do autismo ser o resultado das "mães frigorífico" — frias, distantes — como foi francamente sugerido por Bruno Bettelheim nos anos 60. Estamos em vias de ultrapassar a sua definição de "um conjunto de impedimentos". Se chamarmos ao autismo um "distúrbio" estamos a ser humanos e a oferecer solidariedade e ajuda, ou estamos a fazer um julgamento que estereotipa, reduz as expectativas e ignora a variação nos resultados?
Mas, se não é correcto falar de um distúrbio, qual será exactamente a linguagem mais sensata e quais são os enquadramentos conceptuais que a acompanham? A distinção comummente aplicada entre "alto funcionamento" e "baixo funcionamento" ignora enormes variações nas capacidades do indivíduo autista e parece, ainda, classificar um grupo de seres humanos como sendo, de algum modo, inadaptados. Ao discursar sobre o espectro do autismo, temos de ser humanos, respeitar a diferença e a individualidade, respeitar a necessidade da assistência possível e reconhecer a diversidade dentro do espectro e tudo isto sem assumir que as várias maneiras não autistas de ver o mundo são sempre as correctas.
A percepção pública mais comum é a de que autismo significa crianças doentes e compete à comunidade académica corrigir esta concepção Se analisarmos os dados parece fácil encontrar muitas crianças autistas. No entanto, parece bastante difícil encontrar um número significativo de adultos autistas, pelo menos de acordo com os padrões da percepção pública mais comum. Por exemplo, um valor típico sugere que os Estados Unidos têm cerca de 500.000 crianças autistas, para uma prevalência de cerca de 1 em 150. Isso significaria que os Estados Unidos têm também 1 milhão e meio de adultos autistas. (Estes números são aproximações pouco exactas e estão ainda a ser debatidos.)
Eu acredito que os Estados Unidos têm efectivamente mais do que um milhão de adultos autistas. Mas se há tantos adultos autistas, a questão óbvia é: Onde estão eles? Quem são eles? Estão todos institucionalizados? Às vezes é sugerido que deve haver uma "epidemia" de autismo muito recente. Mas o cálculo epidemiológico da prevalência do autismo - se aceitarmos alterações intencionais nos critérios de diagnóstico, na consciencialização, na disponibilização de serviços, nos métodos de detecção de casos, etc. através do tempo - não indicam grandes aumentos inexplicáveis. Podíamos argumentar a favor de um aumento gradual na taxa de autismo, dado que os comprovantes existentes não podem abarcar todas as alterações (eu penso que a taxa é constante ao longo do tempo), mas o crescimento seria tão incrementado que, uma vez mais, um cálculo ponderado seria de mais de um milhão de adultos autistas nos Estados Unidos.
É um bocado difícil falar ou escrever acerca dos autistas que possam trabalhar na nossa instituição. Se trabalhamos numa universidade é muito provável que estejamos a interagir com pessoas no espectro do autismo muito regularmente. Talvez a reacção do leitor seja a de fazer uma lista mental de pessoas no seu local de trabalho e passar a aplicar-lhes vários estereótipos. Talvez esteja alerta na próxima reunião da faculdade à procura de pessoas que exibam "traços autistas" e depois vá falar dessas percepções aos seus amigos.
É a natureza humana. Mas eu sugiro uma abordagem alternativa. Adopte o individualismo. Questione os seus estereótipos. Talvez deva mesmo ver-se ao espelho. Quando acabar, é provável que veja muito mais talento, numa muito maior diversidade não ortodoxa do que estava à espera.

*Tyler Cowen é professor universitário de economia na George Mason University, com o seu blog http://www.marginalrevolution.com e que escreve para o * The New York Times, Money, * e outras publicações. Este ensaio foi adaptado do seu novo livro da Dutton,* Create Your Own Economy: The Path to Prosperity in a Disordered World. (Crie a sua própria economia: o caminho para a prosperidade num mundo desordenado)

http://chronicle.com
Secção: The Chronicle Review

sábado, 18 de julho de 2009

Gradução de Kalen Molton (ou o nome verdadeiro Karen Buckle)

First class: the autistic single mum of three
14 Jul 2009

Karen Buckle always knew that if she did it at all she would graduate with first class honours at The University of Manchester, despite being autistic and a single mother of three who had also found the time to start up and chair the European self help organisation Autscape.
But even she was also surprised and pleased to find she had achieved the highest mark on the Cognitive Neuroscience and Psychology course and also won one of only five Wellcome Trust Studentship Bursaries to study a Masters in Health Care Ethics and Law.

“My result wasn’t an alternative to a poorer but okay result, it was actually the only way I could have completed it at all,” Karen, 34, explains.

“There is a fine line between first class degree and complete failure for me, and a number of times I have teetered on the edge. Only the support of significant people in my life, including my autistic friends, my Disability Support Officer Bryan Coleman, National Autistic Society advocate Norman Darwen and personal tutor Liz Sheffield at the University, kept me from failing completely.

“If I get it done at all, I do well, but not getting it done or falling apart were significant risks.”

When Karen came for her interview at the University, she was asked if she thought autism was a disorder or a continuation of the spectrum of normal. She answered, “both”.

“Autism is naturally occurring,” Karen, who has high functioning autism known to some as Asperger’s syndrome, says.

“It’s too much of a good thing so it creates problems. The good things are being very perceptive in picking up details really well and very in tune with sensory information, and having very strong and intense focus.”

Karen has had a long journey to graduation. Born in Canada, she was believed to be severely autistic and mentally retarded. Unable to speak properly until six years old, she was re-‘diagnosed’ as gifted at eight. She was bullied throughout her school career until, at 16, she won a scholarship to attend a private school where “bullying just was not tolerated and I didn’t have to hide how smart I was because intelligence was admired rather than shunned”.

But without a proper diagnosis and thus support for her Asperger’s, and with family problems to contend with, she failed to apply for university and fell apart when she had to leave the routine and security of school. Several tough years followed in which she was hospitalised with depression, got pregnant with her first daughter Kendra then fought to get her back when they took her into care.

At 23, she was finally re-diagnosed properly with high functioning autism. She also met her British husband online, moved to Britain to be with him and had two more daughters, Antonia and Erin. When Antonia was a baby, she passed an access course for university and – after a long battle with her support worker for assistance – filled in her UCAS form. Karen recalls: “She thought I should learn simple things like how to clean my house, but I am much better at this.”

Karen chose her course because she wanted to know more about her condition and was interested in psychology generally: “I have spent her whole life trying to figure out people – I hoped that studying psychology would help.” It was a good choice – she learned how the brain works and, while helping with a research project, got her brain scanned to “show off” to her tutorial group.

Sometimes Asperger’s gave her an “unfair” advantage.

“I got one perfect mark for an essay, on Theory of Mind,” she recalls.

“I thought this is a bit unfair, this is my specialist subject. Theory of mind is about what people with autism don’t have – the ability to tell what other people are thinking from their facial expression and understand that other people don’t necessarily know what you know or can be wrong.

“But I was being tested on knowing it, not having it.”

Still Karen had much to overcome due to her Asperger’s. Sensitive senses and need for predictability made her two-hour commute from Northwich to Manchester on unreliable trains that screeched as they passed over railway line points an ordeal. Once in lectures, she struggled to concentrate on the words she would have to write up afterwards – being unable to listen and make notes – as speakers buzzed, microphones sounded feedback and fluorescent lights flickered. She also struggled to work in noisy labs where students had to form and work in groups.

“Sometimes it took everything I had just to endure the hour until I could escape,” she says.

“I could never escape a lecture because it would require too much initiative to break the fixed activity of sitting in the lecture and I wouldn’t want to attract attention.

“Going to lectures, and especially to labs, took so much out of me that I did absolutely no work at the same time as attending. I would learn everything and write my assignments in revision periods. Plus I couldn’t work in the holidays because my three daughters were at home.”

In addition, she founded and chaired the organising committee for Autscape, an organisation of autistic people who run an annual conference for autistic people in the UK, for which she won second place in the University’s Student Volunteer of the Year awards. She also gave autism training presentations across Europe.

Karen succeeded, as she knew she could, in part thanks to the support of staff at the University, her friends and family, and her classmates.

“I told my tutor group about my autism at our first meeting and they have been really great,” she says.

“I even hired one as my support worker. She got me included. I thought I didn’t need to feel included but once when we went for sandwiches, they waited for me outside the shop, and I was thrilled.”

Karen will spend graduation day with her friends, including her ex-husband and new partner, and her daughters, Kendra, 13, Antonia, seven, and Erin, five.

“I’m not sure the girls understand what it means but I once sarcastically said to Kendra, ‘I might be smarter than you think’ and she said, ‘that’s not possible’, which was lovely,” she says.

“I have found my home in academia. So much of my life has been focussed on what I can’t do and now I am in a place where I am good at something. I feel proud and terrified and amazed. I made it.”

Notes for editors
•Karen Buckle and family will be available for photographs at The Quad, University of Manchester, from 3.30pm to 3.45pm on Tuesday 14 July 2009.
For more information or to arrange an interview with Karen Buckle, Liz Sheffield or Bryan Coleman, contact Media Relations Officer Mikaela Sitford on 0161 275 2111, 07768 980942 or Mikaela.Sitford@manchester.ac.uk.

National Autistic Society guidelines on interviewing someone with autism are also available from Mikaela Sitford.

You can also contact Kimi Gill at the National Autistic Society on 0115 847 3528 or 07946 590614 or email kimi.gill@nas.org.uk for more information.

Tradução
Licenciatura de Kalen Molton (ou o nome verdadeiro Karen Buckle)
De primeira ordem: autista, mãe sozinha com três filhas
14 Jul 2009

Karen Buckle sempre soube que se fizesse tudo, completaria uma licenciatura com honras de primeira ordem na Universidade de Manchester, apesar de ser autista e mãe sozinha com três filhas, tendo ainda encontrado tempo para criar e dirigir a organização europeia de auto-ajuda Autscape.
Mas até ela ficou surpreendida e satisfeita por ter conseguido a nota mais alta no curso de Neurociência Cognitiva e Psicologia e ainda por ter ganho uma das únicas cinco bolsas “Wellcome Trust” para prosseguir os estudos num Mestrado de Ética e Legislação de Cuidados de Saúde

“Os meus resultados não foram uma alternativa a um resultado mais fraco, mas suficiente. Foram, realmente, a única maneira de eu conseguir acabar a licenciatura,” explica Karen, 34.

“Há uma linha muito ténue entre uma licenciatura de primeira ordem e um completo fracasso para mim e muitas vezes vacilei nesse limiar. Só o apoio de pessoas que significam muito na minha vida, incluindo os meus amigos autistas, o meu Assistente de Incapacidade, Bryan Coleman, o advogado da National Autistic Society, Norman Darwen, e a tutora pessoal na universidade, Liz Sheffield, impediram que falhasse redondamente.

“Só o facto de terminar já é bom, mas não conseguir fazê-lo ou não aguentar eram riscos significativos”

Quando a Karen foi entrevistada na universidade, perguntaram-lhe se achava que o autismo era um distúrbio ou uma continuação do espectro da normalidade. Ela respondeu, “ambos”.

“O autismo ocorre naturalmente,” afirma Karen, que tem autismo de alto funcionamento, conhecido por alguns como Síndrome de Asperger.

“É demasiado numa coisa boa, por isso cria problemas. As coisas boas são o facto de ser muito perceptivo na apreensão de detalhes e muito sintonizado com informação sensorial e ainda estar focalizado de uma forma muito forte e intensa.”

A Karen percorreu um longo trajecto até à licenciatura. Nascida no Canadá, foi considerada portadora de autismo severo e deficiência mental. Incapaz de falar correctamente até aos seis anos de idade, foi re-diagnosticada como sobredotada aos oito anos. Foi vítima de bullying durante a escola até aos 16 anos, idade em que ganhou uma bolsa para uma escola privada onde “o bullying simplesmente não era tolerado e eu não tinha de ocultar a minha inteligência, porque esta era mais admirada do que evitada”.
Mas sem um diagnóstico adequado e, por isso, sem apoio para a sua Síndrome de Asperger e ainda com problemas familiares, ela não conseguiu candidatar-se à universidade e não aguentou o facto de ter de deixar a sua rotina e a segurança da escola. Seguiram-se vários anos muito duros durante os quais ela foi hospitalizada com depressão, engravidou da sua primeira filha, Kendra, e teve de lutar para a reaver, depois de ela ter sido institucionalizada.

Com 23 anos foi finalmente re-diagnosticada adequadamente com autismo de alto funcionamento. Também conheceu o seu marido britânico online, mudou-se para a Grã-Bretanha para estar com ele e teve mais duas filhas, Antonia e Erin. Quando Antonia era bébé, fez um curso de acesso à universidade e, depois de uma grande luta com a sua assistente, preencheu o seu formulário UCAS (ajuda para acesso à universidade). A Karen recorda: “Ela achava que eu devia aprender coisas simples, como limpar a minha casa, mas eu tenho muito mais jeito para isto.”

A Karen escolheu este seu curso porque queria saber mais sobre a sua condição e porque se interessava por psicologia: “Passei toda a minha vida a tentar compreender as pessoas – tinha esperança que estudar psicologia pudesse ajudar-me.” Foi uma boa escola – ela aprendeu como funciona o cérebro e conforme se envolvia num projecto de investigação o seu cérebro ficava focalizado para “brilhar” para o seu grupo de estudo.

Às vezes a Síndrome de Asperger dava-lhe uma vantagem “injusta”.

“Eu obtive uma nota perfeita num ensaio sobre a Teoria da Mente,” recorda ela.

“Penso que isto é um pouco injusto, dado que é o tema em que estou especializada. A Teoria da Mente fala daquilo que as pessoas com autismo não têm – a capacidade de saber/imaginar o que as outras pessoas estão a pensar através da sua expressão facial e de compreender que os outros não sabem, necessariamente, o que nós sabemos ou podem estar errados.

“Mas eu estava a ser testada quanto ao que sabia sobre isso, não relativamente a quanto eu vivia isso.”

Mesmo assim, a Karen teve de ultrapassar muitas coisas devido à Síndrome de Asperger. A sua hipersensibilidade e a necessidade de previsão das coisas faziam das duas horas de viagem entre Northwich e Manchester a bordo de comboios não fidedignos, que chiavam ao passar em determinados pontos da linha férrea, uma prova de fogo. Nas aulas esforçava-se por se concentrar nas palavras que teria de escrever posteriormente - não era capaz de ouvir e tomar notas – enquanto os professores murmuravam, os microfones zumbiam com feedback e as luzes fluorescentes tremelicavam. Teve de se esforçar também para conseguir trabalhar em laboratórios barulhentos, onde os alunos tinham de formar grupos e trabalhar em equipa.

“Algumas vezes todo o meu esforço era somente para conseguir aguentar aquela hora, até poder escapar”, diz.

“Eu nunca consegui faltar a uma aula, visto que era preciso ter muita capacidade de iniciativa para quebrar a actividade programada de me sentar na sala e eu não queria chamar a atenção de ninguém.

“Ir às aulas e particularmente aos laboratórios custava-me tanto que eu não era capaz de fazer mais nada, enquanto lá estava, para além de estar lá. Aprendia tudo e fazia os meus trabalhos nos tempos de estudo. Também não conseguia trabalhar nas férias, pois tinha as minhas três filhas em casa.”

Para além disto, ela fundou e presidiu ao comité de organização da Autscape, uma organização de pessoas com autismo que realizam uma conferência anual para pessoas com autismo no Reino Unido, pelo que lhe foi concedido o segundo lugar do prémio Estudante Voluntário do Ano, da Universidade. Fez, ainda, apresentações sobre o autismo pela Europa.

A Karen conseguiu tudo isto, como ela sabia que era capaz de fazer, em parte devido ao apoio da equipa da universidade, aos seus amigos e família e aos seus colegas na universidade.

“Falei aos meus colegas do meu autismo na nossa primeira reunião e eles foram verdadeiramente espectaculares,” diz ela.

“Até contratei uma como minha auxiliar. Ela integrou-me. Pensei que não precisava de me sentir incluída, mas uma vez fomos comprar umas sanduíches e eles esperaram por mim à porta da loja – fiquei felicíssima.”

A Karen vai festejar a sua licenciatura com os seus amigos, incluindo o seu ex-marido e o seu novo companheiro e as suas filhas, Kendra, 13, Antonia, 7, e Erin, 5.

“Não sei bem se as raparigas entendem o que significa, mas uma vez disse sarcasticamente a Kendra, ‘Talvez eu seja mais inteligente do que vocês pensam” e ela respondeu, ‘isso não é possível’, o que foi muito giro,” diz ela.

“Encontrei um lar na academia. Muito da minha vida se concentrou naquilo que eu não era capaz de fazer e agora estou num sítio onde sou boa em alguma coisa. Estou muito orgulhosa e aterrorizada e estupefacta. Fui eu que o consegui.”

Notes for editors
•Karen Buckle and family will be available for photographs at The Quad, University of Manchester, from 3.30pm to 3.45pm on Tuesday 14 July 2009.
For more information or to arrange an interview with Karen Buckle, Liz Sheffield or Bryan Coleman, contact Media Relations Officer Mikaela Sitford on 0161 275 2111, 07768 980942 or Mikaela.Sitford@manchester.ac.uk.

National Autistic Society guidelines on interviewing someone with autism are also available from Mikaela Sitford.

You can also contact Kimi Gill at the National Autistic Society on 0115 847 3528 or 07946 590614 or email kimi.gill@nas.org.uk for more information.

sexta-feira, 17 de julho de 2009

Why a firm wants staff with autism

By Jane Dreaper
Health correspondent, BBC News


A computer company in Denmark which has made huge strides in employing workers with autism is expecting to begin work in the UK soon.

Specialisterne was started by a Danish man whose own son has autism.

Thorkil Sonne now employs more than 40 people with autism.

He is finalising plans to set up a branch in Glasgow in the coming months.

He hopes to hire 50 workers in the first three years of operating in Scotland.

Autism affects about 1% of the population across Europe.

According to the National Autistic Society (NAS), people with the condition say a job is the one thing that would really improve their lives.

And yet a survey by Autism Europe shows 62% of adults with autism do not have any work at all.

Difficulties

I visited Specialisterne and met Soeren Ljunghan, 42.

He has a form of autism called Asperger's Syndrome.

It gives him focus and persistence - traits which have helped him become a champion weight-lifter.

But autistic people find social interaction and unpredictability difficult. Soeren endured a spell of unemployment.

He said: "It was a living hell.

"I kept going to job interviews but coming second and wondering why I wasn't chosen.

"It was very stressful. I began to question whether I would work again."


“ People come to me who've had difficulties in the labour market and got depressed. They're like computers that need re-booting ”
Thorkil Sonne
At Specialisterne, Soeren works 25 hours a week testing software.

He said: "I like the work because I know what to expect from each day."

The company's founder, Thorkil Sonne, recognises his staff with autism need a quiet environment and fixed routines.

Given the right conditions, they excel at technical tasks.

Robots and Lego models are used to test their skills.

Thorkil Sonne said: "People come to me who've had difficulties in the labour market and got depressed.

"They're like computers that need re-booting.

"I see them grow in self-esteem.

"It's the most motivating part of my work and a magical moment for me, as the father of a boy with autism."

Thorkil's son Lars was diagnosed at the age of three. He is now 12.

Fulfilling lives

Thorkil told me: "I read up about the condition - but there were too many books describing what people can't do.

"And yet my staff are able to go and work at the premises of our customers.

"I'm so proud. I didn't think that would be possible when I started the company five years ago."

The experience in Denmark shows autistic workers are an untapped resource.

Politicians in the UK are developing plans to help adults with autism lead more fulfilling lives.

Special strategies have been published in Wales and Northern Ireland.

A bill that will provide the first specific legislation on autism for England is making its way through Parliament at the moment, with good cross-party support.

It will lead to formal guidance for local authorities and the NHS about how to help adults with autism.

Charities say this cannot come soon enough.

Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/8153564.stm

terça-feira, 14 de julho de 2009

Children of autism approach adult world - The world has spent years learning how to help autistic children. Now, those children are growing up

by John Faherty - Jul. 12, 2009 12:00 AM
The Arizona Republic .
The face of autism has always been the face of a child.

He is detached from his peers. He speaks little or not at all. He is troubled and troubling.

The image is as heart-wrenching as it is incomplete.
Autism is not a childhood disorder. It never goes away.

The child born in 1980 - the year the American Psychiatric Association first added autism to its list of known mental disorders - is now nearly 30 years old.

The new face of autism is a young adult, trying to carve a place for himself in society.

He is beginning to step away from his parents who have gone to great lengths to nurture and protect him.

He is looking for work and acceptance because the children of autism are no longer children, and they are here to stay.


. . .

Eric Foley loves cameras and stereo systems. He snaps his fingers when he walks, the clicks in perfect rhythm with his steps.

And, at age 26, he has never spent a day apart from his parents. Eric is autistic.

They are with him nearly every moment of every day.

"We don't go out for romantic dinners," Donna, 60, said with a laugh. "We spend Valentine's dinners with Eric. We are three people. But it was our choice. And it was the right the choice."

Donna knew there was something different about Eric, the youngest of three siblings, before he was 18 months old.

"I kept saying to my husband, 'I think there is something wrong. Something is not right.'"

The Foleys began a long series of doctor's appointments and testing.

There were diagnoses and re-diagnoses and finally, at age 4: autism.

They placed Eric in a Montessori preschool. Then a special school for children with development concerns. Then public school.

Finally, in seventh grade, they found a specialized academy that worked for Eric.

"We spent our entire college fund for Eric in his first year there," Rob, 62, said.

Homework, therapy sessions, and doctor appointments, plus the responsibility of raising Eric's brother and sister, could feel overwhelming.

His entire childhood was an exercise in survival.

"When he was a boy, you were concerned about getting through that day," Rob said.

Even feeding Eric was a constant struggle. Most foods he would not eat. Prescriptions dimmed his appetite.

Through it all Eric remained the same sweet, if remote, boy. Some days broke Donna's heart.

"I would pick him up from school some days and he would be crying because he had not eaten," Donna said. "He had headaches and nausea. I would pick him up with a Ziploc bag filled with food he might eat."

Eric graduated from high school when he was 20 years old.

After years of just trying to get through the day, the task of raising an autistic child was done.

The Foleys, suddenly, needed to switch from just getting Eric to adulthood, to preparing him for life as an adult.

They always knew Eric would likely live well past them, but suddenly it seemed so real.

"It's like that dream. The dream when you have to take a test and you know you have not studied enough," Donna said. "It's not a good feeling."

Rob and Donna have worked hard to leave Eric financially secure, but for Donna, the question of Eric's future is not as simple as money.

"I'm 60. I'm not going to live forever," Donna said. "Who is going to care for him? Who will treat him with tolerance and patience? Who will love him?"


. . .

Autism is a complex neurobiological disorder that impairs a person's ability to communicate with and relate to others.

Different people with autism can have very different symptoms. Health-care providers think of autism as a "spectrum" disorder, a group of disorders with similar features.

The condition occurs in all racial and ethnic groups. It is four times more likely to strike boys than girls.

For decades, autism was believed to occur in 4 to 5 per 10,000 children.

In 2007, the Centers for Disease Control and Prevention released new data, which showed an astounding increase in the number of diagnosed cases.

A broad survey of 8-year-old children showed that nearly 67 per 10,000 were living with an autism spectrum disorder, an increase of well over 1,000 percent. The increase is largely because parents and doctors now do a better job of identifying the symptoms and better classifying the children.

The CDC also acknowledges an actual increase in the number of children with the disorder, though the reasons are unknown.

In 2008, Easter Seals conducted a national study and found that 1.5 million Americans have an autism spectrum disorder. Twenty percent, or 300,000, of those people are age 22 or older.

The details of the study told a story that parents of children with autism have known all along.


• 76 percent of teenagers with autism over the age of 16 have never looked for a job.


• 79 percent of parents of children with autism are "extremely" or "very" concerned about their children's future independence. Of "typical" parents, by comparison, 32 percent are equally concerned.


• 79 percent of adults with autism still live at home.

Denise Resnik is the mother of Matthew, an 18 year-old with autism, and is a longtime advocate for people living with the disorder.

For parents, Resnik said, the job of parenting an adult with autism does not get easier.

"I thought it was complex with Matthew as a kid," she said. "It is infinitely more complex with Matthew as he is becoming an adult."

Autism advocacy groups are growing up, too.


. . .

On a recent summer afternoon at Southwest Autism Research & Resource Center (SARRC) in Phoenix, Erin Onacki was readying three young men for a rite of passage.

The three sat in their chairs completely silent. There was no nervous small talk, not even an acknowledgement that other people were in the room.

SARRC began more than a decade ago to support families affected by autism.

At that time, most parents were concerned about education and child-rearing. They wanted help figuring out how to get their autistic child to go to school, to pay attention in class, to deal with the social minefield of the lunchroom.

They needed to find the best teachers or doctors or support groups.

This year, SARRC opened the Opus West Vocational & Life Skills Academy.

There are classes on cooking and cleaning and money management. There are also classes on how to find work.

That's why Onacki was standing before the three young men.

She broke the silence in the room by creating a game to help them practice the start of a job interview.

"When the employer walks into the room, you stand up and say hello," Onacki said. "Then you introduce yourself while extending your right hand to shake the employer's hand. Then you squeeze his hand like a brake on a handlebar. Meaty part of the hand to the meaty part of the hand."

She asked them to practice with each other.

She spoke about what to wear to an interview. About the importance of being on time.

Then she stopped. Two of the men were facing each other - still shaking hands.

She had to laugh. "You can let go now," she said. She advised them to just shake twice. "Up-down once. Up-down twice. That's enough."

Some autistic adults will not be able to find work. Others, usually those with less severe forms of the disorder, can.

Autistic adults from SARRC work as busboys and prep-cooks at Outback Steakhouse. They take tickets at Harkins Theatres. They stock shelves at PetSmart and CVS pharmacies.

To date, 100 adults have worked with SARRC's employment services division. Twenty-five have been placed and the others are on their way.

Matt McMahon owns 18 Outback Steakhouse franchises in the Southwest, and has committed to having at least one autistic adult working at each one of them.

For him, it's personal. His 12-year-old son is autistic.

"Remember your first real job? Remember how you felt?" McMahon said. "They come to work feeling that way every day."


Resnik, a co-founder of SARRC, says employers have told her the workers with autism can be model employees because they arrive on time, they don't mind repetitive tasks, and they don't steal.

"For the past 20 years, we've been talking about how horrific autism is," Resnik said. "And now we are saying that we need these young people to live with you. To be in society."


. . .

In 2007, Lisa Giungo called a meeting with the staff at her central Phoenix restaurant, Lisa G Cafe Wine Bar.

They would be getting two new hands, she told them. Adam Bernstein would be a prep cook, and Zoe Talaska would bus tables. Both were autistic.

Some of the staff were less than enthusiastic.

Giungo insisted. She was creating an internship where autistic adults could get their first taste of a real job.

Someone so inexperienced, and autistic on top of that? Her chef needed convincing.

"He was about to be a father, so I told him it might be a good way for him to learn some patience," she said.

Almost immediately, the chef changed his mind. Adam was a perfect fit in the kitchen.

"He was so good," Giungo said. The chef "only had to tell him how to do something once. After like one week, (the chef) came to me, and said 'God, Lisa, he's perfect.'"

Zoe's path in the dining room was bumpier.

In the menu, Lisa put a note that explained who the new employees were: "These young adults will be in the restaurant with a job coach several times a week developing vocational skills that will help them with their career development . . . . If you have any questions please ask us."

But many diners missed the explanation. Zoe seemed brusque. Some patrons were put off.

There was the day a woman put her purse on the floor. Zoe insisted, repeatedly and strongly, that the woman pick it up.

There were days when she would clear a table or pour water with none of the pleasantries that diners expect.

Giungo was getting worried. She was committed to helping the SARRC clients, but as a small-business owner, she could not afford to put off her customers.

Finally, she found a simple solution. A name tag.

Zoe wore it around her neck when she was working. It explained who she was, and why she was there. "People loved her then. They asked to sit in her area specifically," Giungo said. "People understood, and it made all the difference."

Each job placement provides an opportunity to make the autistic and non-autistic comfortable.

It's a big part of Onacki's job.

"I just spoke to 100 workers at US Airways about autism because we have placed one worker there," she said. "That's invaluable to us. They had so many questions. The more they knew, the better it seemed."

Every time a SARRC client is placed, a job coach learns about the new job, then spends two weeks at work with the new employee to ease the transition, and to answer any questions other workers may have.

Teaching people about how to work alongside the autistic, then letting them actually do it, are the key to a future where autistic adults will fit into the world around them, she said.

"We have to do this," Resnik said. "Autism does not go away, and neither do the people living with it. We have to learn how to live together."


. . .

Even as an adult, feeding Eric is a challenge.

He spends each day at work with his parents. For lunch, they go to their usual restaurants.

Eric likes the pepperoni pizza at Johnnie's Chicago Style Pizza, the flaming cheese appetizer at Saba's, and a double cheeseburger, plain, at McDonalds.

"We know his diet is not ideal," Rob said. "But even his doctor said the aggravation of trying to get him to eat better is not worth it."

On a recent lunch break, they were seated at a table near the kitchen at Saba's.

Their waiter approached. "Hello," he said. Eric looked up and blurted: "Flaming cheese."

The waiter smiled. He knows the family well by now. Eric's order, he said, was already in.

Eric's parents have always described him as "mildly impaired."

And on the wide autism spectrum, he is.

He is handsome and always impeccably dressed. He is quiet but well-mannered and obviously bright.

When he meets new people, he shakes their hands and looks them in the eye. But moments later his eyes fall back to the floor.

Eric is now in the middle of SARRC's job-training program. Soon, he will interview for a job at a Harkins Theatre near his parents' home.

Scottsdale-based Harkins has worked closely with SARRC to find work for qualified applicants.

The Foleys, who have spent the past 26 years constructing a cocoon around Eric, know they need to start letting him go a little bit.

"Even people who are close to us have a hard time understanding why (Eric) is not employed. Or driving. Why he is not more independent," Donna said. "I don't think they understand because there is no visible sign of impairment."

The Foleys are as concerned about Eric's emotional development as they are worried about him working.

The Foleys hope desperately that Eric will start to make friends.

Rob is a charming and gregarious man. He is as adept in social situations as Eric is awkward.

"He is missing out on so much," Rob said. "That is a real sadness for me. I hope he develops those relationships. I don't know if he will. Probably not."

It is hard to know how much Eric feels that loss.

Eric speaks in a quiet monotone, his eyes low.

Is he happy? Yes, he says.

Does he know his parents love him?

"That's fine. That's good. They love me."

Does he know what autism is? Not really. He knows he has it, but can't explain it.

Are his parents old?

"Older than me. I wouldn't consider them old."

Does he ever wonder what his life will be like when they die?

"I haven't thought about that. I wonder what I'll do when they are gone. I don't know."

segunda-feira, 13 de julho de 2009

Mothers Of Children With Autism Have Higher Parental Stress, Psychological Distress

ScienceDaily (July 9, 2009) — Ask any mother and she'll tell you that raising a preschooler is no easy task. Now imagine what it must be like to bring up a child with autism or a developmental delay.

Researchers at the University of Washington's Autism Center asked mothers about their experiences and found that moms of children with autism had higher levels of parenting-related stress and psychological distress than mothers of children with developmental delay. Children's problem behavior was associated with increases in both parenting-related stress and distress in both groups, but this relationship was stronger in mothers of children with autism.
"Both groups of women are dealing with children who need high levels of care-giving. But there is something about autism that is making a difference and adding stress and psychological distress to these mothers," said Annette Estes, lead author of a new study and associate director of the UW Autism Center.
Surprisingly, the research also found no link between a child's decreased daily living skills and increased parental stress and psychological distress.
"This finding was counterintuitive," said Estes, who is also a research assistant professor of psychiatry and behavioral sciences. "If a child has more needs in getting dressed and in other daily living skills, that means the parents are working harder and seemingly would be under stress. But it is not the hard work that is stressing the mothers. Our findings really pointed to the behavior problems that can occur with autism. Children with autism had significantly higher levels of problem behaviors than children with developmental delay."
These behavior problems included such things as irritability, agitation, crying, inappropriate speech and not being able to follow rules.
For this study parental stress was defined as being the stress directly related to a person's role as a parent and parenting a child with a disability. Psychological distress is more general stress, such as that experienced by a person who is nervous about her job or life in general but may or may not be confident about her parenting.
The study included 73 mothers and their children – 51 of the youngsters had an autism spectrum disorder and 22 had developmental delays. The families were part of a larger study exploring the neurobiology and developmental course of autism. The children in the stress study were predominantly male, white and about 3½ years old when data was collected.
Parents filled out a number of detailed surveys that measured parenting stress, psychological distress, problem behaviors and adaptive functioning level. The last charted a child's daily living skills in such areas as dressing, feeding, using the toilet, bathing and helping with household chores.
The study, Estes said, looked at psychological stress, not psychiatric disorders in mothers.
"We were not diagnosing disorders and our sample of parents likely did not include the most distressed parents, those who did not have the resources to take the time to participate in a research study or those who were probably too busy and stressed raising a disabled child to participate.
She noted that problem behavior needs to be a crucial target in treating children with autism and developmental delay.
"We need to focus on it because it appears to have the potential to disrupt the family, parenting and the child. While problem behavior is not a core element of autism, it might rise to the top of the issues that have to be dealt with first in a clinical setting," Estes said. "Help in what we call family adaptive functioning is what we need to figure out in these cases. How to help families is important because high levels of stress and psychological distress can interfere with early identification of autism and interventions which are delivered by parents. There's another good reason to do this: Parents who feel supported can better support their children."
The paper has been published in the online edition of the journal Autism and the research was funded by the National Institute of Child Health and Human Development. Co-authors are Jeffrey Munson, an assistant research professor in the UW Autism Center; Geraldine Dawson, a UW emeritus professor of psychology who is now the chief science officer of Autism Speaks; Elizabeth Koehler, a former UW biostatistics graduate student; and Xiao-Hua Zhou and Robert Abbott, UW professors of biostatistics and educational psychology, respectively.


--------------------------------------------------------------------------------

Adapted from materials provided by University of Washington.

University of Washington (2009, July 9). Mothers Of Children With Autism Have Higher Parental Stress, Psychological Distress. ScienceDaily. Retrieved July 9, 2009, from http://www.sciencedaily.com­ /releases/2009/07/090708153233.htm

Son Rise - Part I

video

quarta-feira, 8 de julho de 2009

Livro - Autism: The Facts

Autores:
S. Baron-Cohen and P. Bolton


What causes autism? What happens to children with autism when they grow up? Does autism run in families? What kind of educational setting is best?

In collaboration with the National Autistic Society, the authors have discovered the questions on the minds of parents and professionals, and have attempted to answer them.

Autism is a puzzling disorder. It begins in early childhood, and disrupts many aspects of development, leaving the child unable to form social relationships or communicate in the usual way. This fascinating book explains in a clear, straighforward manner what is known about the condition. It also provides helpful information about all the relevant organizations.

Written first and foremost as a guide for parents, but required reading for interested professionals, it covers the recognition and diagnosis of autism, its biological and physiological causes, and the various treatments and educational techniques available. It presents the facts, allowing the reader to take an informed position about children with autism.

1993
Oxford University Press
Paperback; 122 pages
ISBN: 0192623273

terça-feira, 7 de julho de 2009

Autismo: Gene comum foi identificado

Por Redacção

Investigadores americanos identificaram o gene comum a todas as formas de autismo. Esta doença afecta as capacidades de comunicação e o estabelecimento de relações sociais.

O estudo publicado pela revista Nature identifica uma ligação directa entre o código genético e esta perturbação mental.

O prof Edgar Pereira, psicólogo e doutorado em autismo em entrevista à RTP explica a importância da descoberta.

«Há muitos anos que os investigadores tentavam trilhar quais as causas do autismo. Suspeitava-se de uma base biológica», diz o especialista.

«Este estudo vem pela primeira vez conjugar uma variação comum na série de perturbações do autismo principalmente na compreensão de como pode evoluir esta perturbação», acrescenta.

Quanto à prevenção, diz ser ainda muito cedo para se falar nisso, só mais tarde através da manipulação genética. 12:39 - 25-06-2009

Brinquedo para crianças Autistas

Um grupo de alunas do 12º ano da Escola Secundária de Santa Comba Dão (ESSCD) construíram um boneco adaptado para entregar a uma criança portadora de autismo.

"Um cão, um comando que faz de livro e uma casota, são os três brinquedos que compõem o boneco adaptado", refere José António, professor da escola ESSCD.

As alunas escolheram o tema "reabilitação cognitiva" para ao longo do terceiro período lectivo, desenvolver o boneco adaptado, na disciplina de Área de Projecto . "Escolhemos o tema reabilitação cognitiva e depois fomos falar com uma professora do Instituto Piaget para saber como podíamos explorar mais este assunto" explica Liliana Costa, uma das colaboradoras do projecto.

O brinquedo contém um circuito electrónico que é activado quando a criança carrega no botão do livro e depois o cão começa a ladrar. O som do cão vai estimular a parte motora e cerebral da criança. "Este brinquedo vai ser entregue a uma criança com autismo, mas podia ser entregue a outra criança qualquer, visto que o objectivo principal do brinquedo é estimular o desenvolvimento das crianças", esclarece Sofia Marques, outra das alunas envolvidas no projecto.

As alunas pensaram ainda em doar o brinquedo a um dos lares do concelho, mas quando tiveram conhecimento da criança que frequenta a Creche da Misericórdia nem hesitaram em lhe oferecer o boneco.

A entrega do brinquedo ainda não ocorreu porque a criança se encontra hospitalizada.



O que é o autismo?
É uma deficiência não uma doença porque quando se fala de doença implicada remédios e cura e o autismo é uma deficiência que se pode controlar com terapia" esclarece Prazeres Domingues da Associação Portuguesa para as Perturbações de Desenvolvimento e Autismo (APPDA). É uma alteração "cerebral" / "comportamental" que afecta a capacidade da pessoa comunicar, de estabelecer relacionamentos e de responder apropriadamente ao ambiente que a rodeia.

Algumas crianças, apesar de autistas, apresentam inteligência e falas intactas, outras apresentam também retardo mental, "mutismo" ou importantes atrasos no desenvolvimento da linguagem.

Juliana Martins

ed. 381, 03 de Julho de 2009

segunda-feira, 6 de julho de 2009

Another View on Autism

Self-advocates reject the term disease; seek accommodations instead.

by Greg Marx
Posted June 26, 2009



Ari Ne’eman likes Thai food. He especially likes nua-num-tok and pad Thai with beef, which he orders every time he comes to his favorite Thai restaurant on First Street in Washington, D.C., not far from the Library of Congress. Ne’eman makes this minor revelation shortly after we meet for the first time, then watches me pick up my pen. “You’re writing that down, aren’t you?” he asks.

Ne’eman, a graduate of East Brunswick High School, can be sensitive about how he is portrayed, and not without reason. As a teenager, after being diagnosed with the autism spectrum disorder Asperger syndrome, he had to fight to be included in a mainstream classroom rather than a segregated special-education environment. Now, at the age of 21, he is one of the most visible figures in a movement of “self-advocates” who are challenging the way autism is perceived, researched, and treated. Their claim: The brains of autistic individuals work differently than other people’s, and that can pose challenges as they make their way through a world designed for so-called “neurotypicals.” But autism is not a disease, say the self-advocates, and it does not require cure or prevention—approaches that self-advocates say amount to a eugenicist impulse to eliminate a strand of human experience.

Instead, they say the condition calls for support, accommodation, and acceptance of difference. (Support can include alternative means of communication, residential options, and counseling in social skills.) And while autism policy has traditionally been established by either parents or professionals, the people who are best-equipped to define their needs, they argue, are autistic individuals themselves. “Some possibility of self-advocacy, some possibility of self-determination, I believe exists for everyone,” Ne’eman says. However, Ne’eman does “acknowlege and defend” autism’s consideration as a disability.

Ne’eman advances this line of thinking from his post as president of the Washington-based Autistic Self-Advocacy Network (ASAN), which he founded in 2006. (A senior at the University of Maryland, Baltimore County, Ne’eman spends much of his time in the nation’s capital.) The organization grew out of an autistic culture movement that has been building for two decades, and is part of a larger effort to promote “neurodiversity”—the concept that differences in neurological orientation are just as legitimate as other variations in the human condition. ASAN has become, in short order, a leading advocate for a policy platform that includes alternatives to institutionalization, greater investment in communication support, and a de-emphasis on genetic research. It amounts to, Ne’eman says, nothing less than a new civil rights struggle.

In many respects, ASAN has been startlingly successful. In 2007, the organization led a successful effort against the New York University Child Study Center’s “Ransom Notes” campaign, which equated an autism diagnosis with kidnapping. A bill that would enact one of the group’s top current policy objectives – shifting people with developmental disabilities from state institutions to community housing – has been introduced in both houses of the New Jersey Legislature. And, increasingly, mainstream autism organizations are incorporating the views of people with autism.

Marguerite Colston, a spokeswoman for the Autism Society of America, notes that her organization has three autistic adults on its board of directors. “I basically report to people with autism,” she says. “They set the policies we use.” Similarly, Autism New Jersey, a statewide advocacy and services group based in Ewing, has a person with autism on its board and plans to establish a separate self-advocate advisory board made up of people on the autism spectrum, according to its executive director, Linda Meyer.

Ne’eman’s skill and savvy have been key drivers of much of this change. “I love watching him make a recommendation, because he’s making it at the same high level of understanding of policy that the state folks are,” says Leslie Long, public policy director for Autism New Jersey, who served alongside Ne’eman on the New Jersey Adults with Autism Task Force. “He makes you look at yourself in the mirror.” But Ne’eman’s talent—and the effectiveness of other ASAN officers like vice president Scott Robertson, a Wayne native who diagnosed himself with Asperger syndrome (it was confirmed by a professional) and is now pursuing a Ph.D. at Penn State—is in some ways a challenge for the movement he represents.

Though Ne’eman has always struggled with social and non-verbal communication—encountering a complex social situation like a party, he says, can be “somewhat akin to walking through a minefield with a blindfold on”—it would be hard to argue that he should not have as much autonomy as anybody else, with whatever support is needed to make that possible. But ASAN is not only calling for better services, more dignified treatment, and greater attention to the words of autistic individuals who can speak for themselves. It is also pushing back against what Ne’eman, with rising anger in his voice, calls “the cure agenda”: the effort to find a cure for autism or, more feasibly, to identify ways to prevent it.

These points sometimes put self-advocates into conflict with researchers and parents, who may look at a “high-functioning” autistic person and think: I’m glad you are doing well, but the things you are talking about don’t bear much relation to my child.

One chilly evening late last fall, I paid a visit to the home of Joel and Lila Redmount, on a quiet street in Scotch Plains across from the local elementary school. Joel, an advertising executive and a board member of Autism New Jersey, and Lila, a social worker, have four children. The oldest, Logan, was diagnosed at age 2 with “severe autism,” including serious communication impairments and broader developmental disabilities.

When Logan was 6, the Redmounts moved to New Jersey, where Logan entered a school that used an early intervention protocol known as applied behavior analysis and learned snatches of sign language: drink, bathroom, help, more, thank you. More importantly, Lila says, “what Logan learned was to live with us.” (ABA, though endorsed by many researchers and autism organizations, is controversial within the self-advocacy community. Asked about ASAN’s position, Ne’eman says, “We have a great deal of concerns around how the field has focused on normalization above skills-building and the prevalance of abusive practices …. amongst many practitioners within the field.”)

Though her eldest son still does not speak or read and rarely initiates communication, Lila says, he is “absolutely attached” to his 9-year-old brother, Nathaniel; her face lights up as she describes them playing on the trampoline together in the family’s backyard. Now 22, Logan can no longer attend school, but after a bumpy transition he “seems to have adjusted well” to sheltered employment, Lila says. “He comes out with a smile on his face.”

Many of the Redmounts’ concerns overlap with ASAN’s. Both want better residential options for adults, more support services, and a society that does not stigmatize unusual behaviors. But their relationship to autism, and their idea of what it means to be an advocate, is very different. “For us, as a family, Logan doesn’t have a voice—we have a voice,” Lila says. And while he understands the anti-cure argument, and came to terms long ago with the fact that his own son would never be cured, Joel says, “If we could cure Logan’s autism by tomorrow, we would certainly do it.”

As for Logan’s ability to advocate for himself, Joel says, “I have trouble equating self-determination with Logan.”

According to Peter Mundy, a developmental psychologist and Berkeley Heights native who now serves as director of educational research at the M.I.N.D. Institute at the University of California-Davis, one of the key issues surrounding the debate is IQ. A Center for Disease Control study, drawing on data collected in 2000, concluded that about 40 percent to 60 percent of individuals with autism have intelligence that falls within the normal range. “The vast majority of people with autism today have great potential,” Mundy says. But he adds, “When you start getting below 50, in terms of IQ, in combination with autism, that becomes very, very problematic for nearly all affected people.” And while the ideal of self-determination is commendable, “in some cases, inclusion or self-advocacy either isn’t practical or isn’t optimal for the health and development of the individual,” Mundy concludes.

Acceptance of the different philosophies about autism has very tangible consequences. A strategic plan for autism research recently prepared by a federal advisory body, for example, recommended hundreds of millions of dollars for biological research, with a comparatively scant amount to study services and support. In the eyes of many self-advocates, the balance should be shifted substantially.

Still, it’s possible to overstate the significance of the divide. For one thing, the different camps may use competing language to talk about the same goal. Ne’eman, for example, would likely see Logan Redmount’s smile at the end of the day as an act of self-determination, while Alison Singer, former executive vice president of Autism Speaks, says that “when my daughter is able to function at the level that [Ne’eman] is, I will consider her cured— that’s the goal.” For another, the split is far from absolute: Plenty of family members adopt the neurodiversity perspective, while Ne’eman is at pains to say that the self-advocacy movement is not about “dictating to parents,” and that it needs to remain vigilant about being accessible to people with intellectual or communication disabilities.

Walking off that pad Thai after lunch, Ne’eman reflects on the movement he is a part of. The goal, he says, is to create “better quality of life and better services for autistic people across the spectrum. As long as that’s what guides us, I think we’re moving in the right direction.”

Greg Marx is a Jersey-City-based freelance writer. He was recently named an assistant editor of the Columbia Journalism Review.