Aspies For Freedom

http:// seattletimes.nwsource.com/html/localnews/2003486439_needy20m.htm

Fund For The Needy
Center offers treatment, education, hope to families coping with autism
By Kyung M. Song
Seattle Times staff reporter


JOHN LOK / THE SEATTLE TIMES
Kimberly Walsh comforts her son, Ian, 4, at the ASTAR (Autism Spectrum Treatment and Research) Center.

Kimberly Walsh wasn't unduly alarmed that her newly adopted son weighed just 17 pounds at age 3, barely toddled and uttered nothing intelligible. Severe neglect and deprivation at his orphanage in India likely stunted Ian's growth.

But nutritious foods, a skilled pediatrician and a devoted mother failed to help Ian thrive. Walsh endured a year of vexing frustration before learning why: Ian had a form of autism.

The diagnosis initially crushed Walsh, a health-care executive with fortitude enough to adopt two boys as a middle-age, single woman.

"I was devastated because I thought autism was a dead-end disease," Walsh says.

Walsh, 49, has learned otherwise. Ian was diagnosed with a high-functioning form of autism, a neurological disorder with no known cause or cure. With intensive treatment, Ian may attend college and get married.

Ian is among the hundreds of autism patients who foundered through misdiagnosis or missed diagnosis before arriving at Seattle's ASTAR Center. Dr. Gary Stobbe co-founded the center in 2003 to focus on treatment and research of disorders on the autism spectrum.

A cognitive behavioral neurologist, Stobbe became frustrated that so many kids with autism were diagnosed late — only then to face months-long waits for occupational or speech therapists or other treatments. He created ASTAR as a treatment and education center not only for people with autism but for their families, on whom autism takes a huge financial and emotional toll.

ASTAR is in a former Taco Del Mar site whose utilitarian look suits the nonprofit's scrappy zeal. Stobbe's wife, Mari, co-founded the center and acts as its advocate, insurance collector and coffee fetcher. The couple formed ASTAR as a nonprofit because they knew that treatment fees would not cover their costs.

ASTAR


Autism Spectrum Treatment and Research Center offers diagnostic testing, therapy and support training for patients and families with autism spectrum disorders. Autism requires many hours of one-on-one therapy that most insurance plans do not cover. Private donations made up more than half of ASTAR's $440,000 in revenue last year.
ASTAR's mission: to get help for those with autism before it's too late.

Effective treatment, Stobbe says, "is the difference between a child who is institutionalized for life versus having a job."

Autism is estimated to affect one in 166 American births, 80 percent of them boys. It impairs brain function that controls language and social interactions. Some autistic children and adults are mentally impaired. Others have normal IQs. All have varying degrees of language deficits, social detachment and persistent, even obsessive, behavior.

Misha Lynch has a son, Zane, with Asperger's syndrome, which is like a mild form of autism. For the past year, Lynch and her husband have also been caring for a younger boy with autism with help from ASTAR.

Autism in the two boys manifests itself in some strikingly different ways. For instance, Zane, 13, is hypersensitive to touch and finds even hugging painful. He spent his only day at an infant day-care facility screaming nonstop. The 3-year-old, on the other hand, has an insatiable need for touch, wanting cuddles, kisses and pinches until Lynch can give no more.

A succession of medical specialists and psychiatrists gave differing labels for Zane's condition: bipolar disorder, oppositional defiance disorder, obsessive-compulsive disorder. It wasn't until Zane was 9 that a neurologist finally diagnosed Asperger's.

Lynch says it's not unusual for families of autistic children to experience repeated erroneous diagnoses and indifferent doctors on top of dealing with a demanding disease.

"God knows I went through that for years with Zane," Lynch says. "ASTAR has renewed my faith in the medical profession."

Autism is more prevalent than cerebral palsy, Down syndrome or juvenile diabetes, yet few therapies have proved helpful. Treatment must be tailored and requires many hours of one-on-one educational therapy, much of it with the parent.

"The parents have no real life outside the child," Stobbe says. Going on a vacation, securing a baby-sitter and even fetching groceries can be Herculean tasks.

Walsh, the adoptive mother, knows that as well as anyone. She took most of last year off from her job as a clinical research director for a German prosthetics company, forgoing much of her $125,000 annual salary. She has taken out a second mortgage on her Mill Creek home to pay for Ian's care. Walsh's elderly parents in Mississippi have begun lending her money against her inheritance.

Walsh says the sacrifices have been worth it. Ian's impish personality is emerging. He waves goodbye to a stranger, though he averts his eyes. Now nearly 5, he can say, "Me go school today."

Walsh calls Stobbe her hero. It is in part because of him that Walsh dares to dream that autism won't confine Ian forever.

"Ian is going to overcome it with a lot of help," she says.

Kyung Song: 206-464-2423 or ksong@seattletimes.com

They gave an e-mail. Anyone up for pointing out the many inaccuracies in this?

i wanted to comment on this since yesterday morning, but i had to go when i first saw it, then i got caught up in other thigns when i got back.  so, here it goes.

first off, i'm appaled at this quote, "I was devastated because I thought autism was a dead-end disease".  it puts autism as the same level as cancer and aids and other terminal diseases, when autism is nethier terminal or a disease.  it is a diffrence that exhibits diffrent traits than most of the general population, and is not just a set of defecits or defects, but comes with it's own strenghts and weaknesses.

With intensive treatment, Ian may attend college and get married.

problem with this, it implies that autistics without any of the quack treatments being peddled nowadays and years of aba will be stuck in a toddler like state indefitley.  autistics just need education geared twoards their strengths, which could inculde aba (when not trying to fight against the child), speech thearpy, while the child remains autistic and themselves, instead of pretending to be nt.

an additonal problem with this viewpoint is that it prvokes the theory that autistics never develop without intervention, and that everything has to be treatment and thearpy like a cancer paitent in order to have any future, when what autistics really need is just to have fun that isn't structured like some cancer patient and mecalized out of control.  this causes alot of resetment in adults.

a side note for me, i just graduted college with a 3.4 gpa with a bs in biology, and outside of speech thearpy, i had no extended intensive treatment of any kind (aba, cheletation, diets, etc.)

last thing on this sectence, going to college and getting married are personal choices, not a level of functioning.  people who stay single their whole lives are not lesser than people that get married.  i know alot of people who don't desire marrige, so those goals in speficality are a bit too ambiguious and may put pressure for the child to do certian things later.  i think independence from parents would be a more universal goal for all children, as hopefully, the child becomes educated enough to know how to manage a life of their own.  marrige involves diffrent sets of paramaters that shouldn't be pushed as a sign of improvement.

"Ian is among the hundreds of autism patients"  we are not patients, we're people, we need to be seen as people with diffrent needs, not patients waiting to get rid of a tumor.  just becuase we can't learn effectivley in one way doesn't mean we can't learn, and defintley doesn't mean we should just change the child to adjust to those methods.  we should change our teaching methods.  see my earlier comments on this.

"autism takes a huge financial and emotional toll."  this also assumes that all familes spend ludircaious amounts of money on quack treatment and the such.  and the emotional toll, this infers that the child is a pest and that they want to get a replacement child for the one they got, becuase they most likely hate the child they have.

yes, sacrifices must be made for any family rasing any child, but to say autistics put an emotional toll on a family while others don't is somewhat unfair to the child, and could put a addiontal burden on the child to not get the parents mad.

"Autism requires many hours of one-on-one therapy that most insurance plans do not cover."  i didn't know this.  i didn't require many hours of one on one thearpy and i turned out fine.  very bias statement here.  but autistics tend to need more one on one attention than everyone else.  this statement also says that autistics are just money grubbing and reduces them to a medical patient waiting for a cure, when most of us just want to be taught and treated with love.

"It impairs brain function that controls language and social interactions. Some autistic children and adults are mentally impaired. Others have normal IQs. All have varying degrees of language deficits, social detachment and persistent, even obsessive, behavior."  what's the good news?  please see what i wrote earlier about autism being a diffrence in brain wiriing with it's own strengths and weaknesses and not just a set of defects.  we all heard the things autistics struggle with, why don't we hear what we do with flying colors?  social detachment i think is somewhat loaded, as it is hate from others that causes this, and is not always bad.  obbessive behavior is not bad etheir, in fact, that has helped us uncover the greatest discoveries.  and why can't we have high iq's?  or are we just broken nt's?

"Lynch says it's not unusual for families of autistic children to experience repeated erroneous diagnoses and indifferent doctors on top of dealing with a demanding disease."  once again, autism is not a disease.  it is a diffrence.  and the ones creating this demand is snake oil salesman that just want to exploit autistics and their famlies.  very bias and loaded statement.

"Autism is more prevalent than cerebral palsy, Down syndrome or juvenile diabetes, yet few therapies have proved helpful. Treatment must be tailored and requires many hours of one-on-one educational therapy, much of it with the parent."

i don't even get this.  comparing autism to chronic diseaseas that make people sick and then kills them?  autism is not a disease for the last time.  and btw, what are the goals of these thearpies?  make the child more "normal"?  i think the wrong goals are being aimed in alot of cases, instead of working with the child to make him the best autistic he can be (which is not lesser than normal), fighting against the child is encouraged to hate themselves and struggle doing things the "normal" way, which is harder for them becuase that's not the way they do things.  and the picture being painted is that the autistic child is being drilled non stop by the parent instead of being treated like a child, they are being treated as a robot until they see them as "normal".

"The parents have no real life outside the child," Stobbe says. Going on a vacation, securing a baby-sitter and even fetching groceries can be Herculean tasks.

two takes on this.  first of all, the child is not like a toy they can just put away when they want and have their own life.  the parents should be expected to make sacfrices for any child to help them grow and mature.  i think society has forgotten that, and when autistic children have to be taken care of, we look at these parents as "woe is me" simular to the plight of the autism speaks parents.  we should realize that when we bring a child into this world, it requires sacrificing parts of our lives to decidate to the child.

second is that my parents had a life outside of me, i wasn't a annoyance that had to be taken care of all the time and could explode at any time.

the combonation of the two leads to looking at autism parents as the heores and autistics to be looked at as the family wrecker that ruins lives and does nothing in return.

"Walsh says the sacrifices have been worth it. Ian's impish personality is emerging. He waves goodbye to a stranger, though he averts his eyes. Now nearly 5, he can say, "Me go school today."

Walsh calls Stobbe her hero. It is in part because of him that Walsh dares to dream that autism won't confine Ian forever.

"Ian is going to overcome it with a lot of help," she says."

i didn't like the ending here.  it implies that autism is a demon that has to be battled against and causes nothing but heartache for everyone.  the child just needs love and education, not to be engaged with a battle with themselves to be someone they are not.  it also says autism is a restriction to growth and development statis, when it's not.

in short, this article is just reenforcing old sterotypes and disease talk.  i wish it would stop.

Yes, it annoys me a lot that autism is referred to as a "disease".
It also worries me that this Ian will be put under a lot of pressure to get better because his mum has put so much time and money into his treatment.

Even if he doesn't go to college and get married, it does not mean he is any less of a person, but the inference is there in the article that a good job, college, and marriage are the only important things to aspire for.

If he ends up as say, a janitor or garbageman (even if an extremely good one), no doubt his mum will think she has failed. If he lives with a lady or a man or decides not to be with anyone romantically, she will also beat herself up about her "failure" in getting him "better" enough to live the American dream.

She would no doubt love grandchildren too but again, this might or might not happen.

What the hell is a 13 year old doing at a daycare facility? He will never learn how the world works if you stick him in an environment boys his age aren't a part of! Many Aspergian people are RUINED this way! THIS IS UTTER AND COMPLETE TOTAL BLASPHEMY!!!

We don't know whether he was 13 when he was put into the daycare facility. It may have been a story from his preschool years. It certainly sounds like it could have come from mine.

I thought it was the 3 year old who was in daycare.

Well, at least they're focusing on parents as well. Someone who's raising an autistic child needs nearly as much education as the child!

After all, auties don't come with instruction manuals.

That's good but I think they need to emphasise that the child is an individual and that the parents need to moderate their expectations to fit in with the reality of their child's condition.

It would be wonderful to have a place where parents can go to have a bit of a rest and talk to others in similar situations.