Aspies For Freedom

By Peter Gorner
Tribune science reporter
Published April 28, 2006

With the stated dream of someday curing autism--a disease being diagnosed in rapidly increasing numbers--Easter Seals Metropolitan Chicago on Thursday announced plans to build a $24 million school and research center on 3.4 acres of land donated by the city.

Organizers say the 86,000-square-foot facility at Damen Avenue and 13th Street will be the first of its kind in the U.S. to integrate education, academic research, early intervention programs and training to prepare patients for work and independent living.

Officials see the Therapeutic School and Center for Autism Research as a way to foster interaction between scientists who work on autism and service providers who can apply their findings to clinical practice and education. The facility will be run in collaboration with researchers at the College of Medicine at the University of Illinois at Chicago and Rush University Medical Center.

"No one has attempted to do something of this scale before. But it's timely, it's needed, and it's altogether unique," said Stephen W. Porges, director of the Brain-Body Center at UIC and a leading researcher into the causes and treatment of autism.

Autism is an incurable, lifelong developmental disability affecting social interactions. Children and adults with the disease find it difficult or impossible to relate to other people in a meaningful way. They may show repetitive patterns of behavior or body movements and often have some degree of mental retardation.

The disease has been said to affect an estimated 1.5 million Americans, and diagnoses are increasing at a rate of 10 percent to 17 percent a year, though the numbers are a source of controversy. Autism occurs in one in every 166 births and is four times more common in boys than in girls.

The exact cause of the condition remains a mystery, and there is no cure. Many scientists think autism results from a complex interaction between genetic predisposition and environmental factors.

Officials outlined their plans at Easter Seals' Therapeutic Day School, 1950 W. Roosevelt Rd., one of two Chicago-area schools where Easter Seals currently provides educational and therapeutic services to more than 150 children with autism. The other is in Tinley Park.

They hope to break ground on the project in the fall and said $5 million has been raised so far, including a $4 million state grant secured by Illinois House Speaker Michael Madigan. The Chicago City Council has approved donation of the land, valued at $3.5 million.

Nowhere else in the country will comprehensive services for children with autism be so well integrated at a single campus facility, according to Easter Seals officials.

"It's being designed from the perspective of the child and not placing the child in a facility that's designed for something else," Porges said. "Their sensitivities to noise, light and the basic environment are not the same. This school takes that into account."

In the new facility, researchers will be able to observe and evaluate individuals with autism in environments where they learn and socialize.

The school will include independent living residence facilities for adults with disabilities, including but not limited to those with autism. The residence will be filled on a first-come, first-served basis.

Other researchers said they were surprised and excited by the Easter Seals project.

"I think the need for it is extreme and has been present for some time," said Dr. Barbara Trommer, director of the Center for Neurodevelopmental Disabilities at Evanston-Northwestern Health Care. "The fact that the need is being recognized and addressed in such a comprehensive fashion is a major step forward for the affected children and their families in Chicago."

As part of a fundraising campaign launched Thursday, Nuccio Dargento and Rocco DeFrenza, owners of Vince's Italian Restaurant, 4747 N. Harlem Ave. in Harwood Heights, announced a pledge of $100,000.

here's another very digusting (and very cliched) part of the article.

what a bunch of lies.  first it implies that autistics desired to be cured and are suffering from some crippling disease that is preventing us to do so much.  autism is only preventing people of something if they let it be like that (aka, not nessicarly a disablity).  we are not deveptonley disabled becuase we develop diffrently, i would say i matured faster in some areas than others compared to the mainstream population, but that's just me...everyone is diffrent, i hate conformity.  next, impossible to relate to others in meaniful ways?  what a lie.  i relate to my friends and have meaniful talks with some of them, the communcation may be diffrent, but it's there notherless.  i guess their version of meaniful is talking in one way only.  this is mostly due to igorance.  and lastly, they mention that we are mentally retarted.  another huge lie.

what is wrong with the media?  they have a bad habit of lying and it shows right there.  that is not the real truth about autstics, and lies like this are why i don't tell anyone i'm autistic, then i'll be treated like i was a drool monkey or something.

Wow, just think - if I'd gone to that school, I could have been cured of AS, gone on to get my teaching certificate, a good job, paid my taxes, got married, had a child, house, and mortgage ... oh wait, yeah, I've already DONE all of that, without their help.   :roll:  
Alison

Amen to that!

Although, on the other hand, I grew up near Chicago, and if a facility like that had existed and gotten autism in general some press time when I was a kid, mine might have been noticed, sparing me a few of the more egregious horrors of the public school system.  So while I think they really need to change their focus, the underlying idea doesn't have to be all bad.  Residence halls and classrooms designed to help people cope with sensory oversensitivities could potentially be a good idea (I can't count how many times things like that have gotten in the way of my learning things I'm overwise completely capable of), and I like that they're not just focusing on children, since there are already so few resources for adults in this country.

As much I do not like the idea of residential schools.  They have some good points.  
"It's being designed from the perspective of the child and not placing the child in a facility that's designed for something else," Porges said. "Their sensitivities to noise, light and the basic environment are not the same. This school takes that into account."

This is good.

The school will include independent living residence facilities for adults with disabilities, including but not limited to those with autism. The residence will be filled on a first-come, first-served basis."  

This just seems strange that it would be offered on first-come, first-served basis rather than according to people's needs.  I guess the researchers want a larger cross section of the autistic spectrum to study and also there was not mention of fees in the article.

I do not need residential care, nor do many people with autism.  But I have to think that there are some people who do.  Hopefully the people with autism will be treated well and the place will not just be full of wheelchair ramps and door openers that people tend to think that is all people with disabilities need.

It could turn out to be beneficial in some ways, but I'll bet it wont. I can see that this could turn out to be an environment in which autistics are controlled by "them" (NT scientists, experts, health professionals and educators and carers) 100% of the time. It could be worse than being in jail, because at least prisoners have some human rights and privacy. Inpatients don't.

Let's not forget that the suckers, oh, I mean autistics, that this place is going to be built to contain are described as "patients". Patients who have a psychiatric diagnosis (which is what autism currently is, whether we like it or not), who are residents of institutions, have throughout history often been treated as though they have no rights of any kind at all. The Judge Rotenburg Centre is a classic example.

Even though autism in no way conforms to the accepted definitions of what a disease is, in this article it is described as such. This is I think an important hint about the kind of people who are working on this project. I'm sure they will be curebies.

Eugh.. curebies.

I fully know that what i am saying is unaccectable and i will probably be banned. however i will say it. i have autism, and several comibidities, including post traumatic stress syndome from what happened to me as a child. i am truely disabled. I cannot do everything a "normal" person can, and this has caused me a lot of problems. i would not give up some of my aspie traits, like my quirky viewpoint, but if some of the comorbids could be fixed and i could funtion better, i would. I am not this way by choice. i am this way because of the brain i started with (damaged by lack of oxygen during birth, among other things) and what has been done to me because of it.not because i wanted it to or let it happen. sorry.  

There is nothing unacceptable about your post.
There are some autistics who are disabled and some who aren't. As you pointed out comorbid conditions are often a big factor in that.

We have often said that Cure Autism Now should use their resources to find help for comorbid conditions. There is a thread about it in the General section.