I'm not much of a writer but I'm thinking about writing a letter to the editor. On one hand, it's good that they draw attention to the lack of options for autistics here. On the other hand, I'm disturbed by the cloud of potential violence that the article seems to place over autistics. Anyone know of any statistics I could quote?

from my local paper, the Times-Picayune in New Orleans

http://www.nola.com/news/index.ssf/2008/...eturn.html


Autistic teen eager to return to school

Posted by sstokes February 24, 2008 20:03PM

By Sarah Carr
Staff writer

At age 15, Johnny lives in a world of rigid boundaries.

Some exist to protect him.

When his younger cousin leaves to meet his mother at the bus stop, Johnny, who is autistic, calmly locks the door after him, knowing he cannot go along.

Other boundaries, the boy creates.

When his family travels to the beach, Johnny hangs back from the shore, sensing that the grainy feeling of the sand on his feet will upset him.

For years, Johnny and his family have labored to build him a more typical teenage life: buying him a cell phone, so that he will feel like other kids; sending him to the movies with a relative, so he can leave the house unaccompanied by his mother.

But finding a school that will take him and give him the specialized attention he needs, has proven a trickier challenge.
In rare moments, Johnny has exploded, occasionally lashing out physically. And that leaves him caught trapped in a murky middle ground: not always sick enough for institutional care, but not always well enough to learn in a traditional school -- with a dearth of options in between.

His predicament highlights the gaping holes in services for autistic children, gaps that persist even as their numbers skyrocket across the country. Varying in form and severity, autism afflicts the brain, impairing communication and social interaction. Autistic children all come with unique needs and behaviors; while some may occasionally become violent -- particularly if they don't receive strong support and therapy -- many others pose no threat.

An estimated one in 150 schoolchildren nationally have been diagnosed with a disorder along the autistic spectrum, including the milder version known as Asperger Syndrome. But many schools and school systems haven't prioritized the needs of autistic students, said Doug Walker, the clinical director at Mercy Family Center in Mandeville, which works with many autistic children.

Little consensus exists on how best to educate autistic children, or where. As schools shift toward serving children with more intense needs in regular education classrooms, they sometimes face a backlash from parents of special education students who want more segregated and specialized services -- programs that come at a cost, and with tradeoffs.

Scores of children get lost in the shuffle as states and schools struggle to confront the mounting challenge. New Orleans schools, having lost many child therapists after Hurricane Katrina, face particularly acute challenges in rebuilding special education programs that struggled even before the flood.

After Johnny's recent release from New Orleans Adolescent Hospital, the Orleans Parish School district was reluctant to take him back, said his mother, Catherine Wilson.

But she was told it would take months to get him into a residential program at a state hospital.

"Acute hospitalization is not the place for him, but it doesn't mean that a regular district school will meet all of his needs either," said William Aprill, a psychotherapist who worked with Johnny when he was hospitalized.

Orleans Parish school officials declined comment on Johnny's case, citing legal privacy concerns. The district did provide general information about its autism programs and released a written statement saying it works collaboratively with families to create individualized education plans -- required by federal rules for all special education students -- to address their "unique needs."

Johnny, meanwhile, desperately wants an education, and to feel like a regular kid.

On breaks from the hospital this winter, his mother drove him past McMain high school in Uptown, a school he attended for two days last fall. The boy often grew excited, asking: "Mommy, when am I going back?"

She never knew how to answer.

Early signs

From the time Johnny started at Dunbar elementary school in New Orleans more than a decade ago, his family knew he had unusual needs. He did not start talking until the age of 5 and insisted on bringing a bottle to school until the age of 8. His family calls him by his nickname, Johnny, and asked his given name be withheld to protect his privacy.

As he grew older, Johnny carried animated conversations with himself, even if alone in a room. Often, he would repeat exchanges he had had during the day with classmates or teachers.

"That's how I would find out what happened at school," his mother said. "He would play it back."

While he clearly needed special help, Johnny posed no threat to others. A happy child, he loved family trips to Deanie's Seafood in Bucktown, where he inevitably ordered the fried shrimp.

"He always wanted shrimp when other kids wanted hamburgers," Catherine Wilson joked. "I'm like, 'You have expensive tastes.'¤"

When the mother sought out special help for her son, child psychologists diagnosed him with attention-deficit hyperactivity disorder, characterized by excited behavior and difficulty paying attention.

But the attention-deficit hyperactivity disorder therapy and medications did little to prevent Johnny's erratic behaviors. And it would be 10 years and four school moves before psychologists at the New Orleans Adolescent Hospital discovered his autism.

His mother, who had never heard the term, began to read voraciously about the disorder. The faculty at Village de l'Est Elementary School placed Johnny in a small class designed for children with autism. For all his challenges, he had an amazing memory and a sweet disposition. With a class that never exceeded four students, he seemed to get the attention he needed.

But that attention may have come too late.

National experts say the treatment of autism ideally starts before a child turns 2 or 3.

"Kids are getting diagnosed younger and younger," said Tom Hehir, an education professor at Harvard University and former director of the U.S. Department of Education's Office of Special Education Programs in the 1990s.

An early diagnosis allows teachers and therapists to work with autistic children to combat potentially disruptive or negative behavior at a time when their brains are growing quickly, he said. Like learning a language, it's much easier to absorb new information at age 3 than age 13.

"If an 18-month-old child isn't looking people in the eyes, and speaking, he should be sent to someone," Walker said. "Don't wait to see if they grow out of it."

Exiled by Katrina

Hurricane Katrina sent Johnny from his family's destroyed eastern New Orleans home and Village de l'Est Elementary to exile in Georgia.

He attended Avondale Middle School in Atlanta for two weeks, Then Eagle Woods Academy in Decatur for the rest of the 2005-06 school year. Catherine Wilson liked Eagle Woods. The public school provides a therapeutic special education program for students who have some type of severe emotional or behavioral disorder. The school had a time-out room for when students got out of control. The teachers seemed to know what they were doing.

The moves, which started just as he hit his teen years, were hard on Johnny, though. While all children need stability, autistic children especially crave routine.

His behavior grew increasingly volatile. A bad thought would get stuck in his head, maybe an unpleasant exchange with a classmate, and he would start rocking back and forth.

Sometimes, Johnny erupted.

In Georgia, Johnny started to obsess over when the family could return to their home in New Orleans. With no place in the city to live, the family instead moved to Baton Rouge in the summer of 2006.

There, Catherine Wilson enrolled Johnny in Woodlawn Middle School. Johnny's behavior degenerated, culminating in a scene it pains his mother to describe.

The boy hurled a chair across his middle school classroom, accidentally slicing a classmate across the head.

The girl recovered, but Johnny grew more tormented.

Special education class sizes were larger than before the storm in Baton Rouge and New Orleans, and the school seemed far less equipped to deal with him than Eagle Woods. He never had the one-on-one aide called for in his education plan.

So Wilson spent many of her days sitting with her son in the classroom. She kept him home from school at times, afraid that he might try to hurt someone. For the first time, he had to be hospitalized, living away from his family until he calmed down.

She said she would prefer that her son attend a school exclusively for children with autism or severe special needs. "That makes a lot of difference," she said. "They have a time-out room. They have security. They don't have to call the police."

Mainstreaming effort

Nationally, schools are trying to "mainstream" autistic children -- as with all special education students -- having them spend more time in regular education programs, not the segregated programs run by schools like Eagle Woods and favored by the Wilsons.

Between 1994 and 2006, the number of autistic children ages 6 to 17 who participated in public special education programs rose by more than 800 percent, according to the Centers for Disease Control and Prevention.

"We are finding that school districts are bringing these kids back into the schools" from private programs or specialized public ones that serve a variety of schools, said Robert MacMillan, the chair of the special education department at Bridgewater State College.

He adds that many states and districts are doing it because it's cheaper than sending children to specialized programs on the public dime. He, as well as many other experts, supports the inclusion of special-needs children in the least restrictive, least segregated environment possible -- provided such programs are done well.

"Because too many people are not trained or prepared for inclusion, unfortunately there is a real misunderstanding of what it is," said Ursula Markey, the co-director of Pyramid Community Parent Resource Center.

Problems also arise when states have no options between mainstreaming and institutionalization, MacMillan said. Or when they fail to provide the help a child needs to thrive in a more traditional environment.

"The current philosophy is to get them out into the community as quickly as possible," said Dr. Martin Drell, the clinical director of the New Orleans Adolescent Hospital. "This is, of course, difficult in post-Katrina .¤.¤. In our case, very often the kids have nowhere to go."

Autism eruptions

Early last summer, the Wilson family -- Johnny, his sister, his mother, and her husband, a forklift driver -- came home.

Sort of.

They moved into a trailer in eastern New Orleans. Catherine Wilson describes it as "like living in a can."

"Living four months in a trailer had to be hard for him, because I know it was for me," she said.

Late in August, the family finally moved into a house in Carrollton. That month, Johnny started ninth grade at McMain High School. On the first day, he erupted. He threw a pencil, hitting another student. So his parents returned him to institutional care, this time the New Orleans Adolescent Hospital, the place where he had been diagnosed with autism five years earlier.

His mother, who had desperately hoped things would improve in his hometown, became distraught. She started making bead jewelry to make it through long days without Johnny there.

Johnny returned home after about a month, spending only another day at McMain.

A tantrum in a Laundromat sent him back to the hospital in mid-October.

This time, when the hospital prepared to release Johnny in November, they ran into a problem finding a school that would take him.

Wilson and Donnica Conway-Strawder, an advocate at Families Helping Families, said McMain staff members told the boy's social worker at the hospital that they would welcome him back. But the district wanted him to have a period of "homebound" instruction after his release. The hospital provides a transitional day-school program, and wanted Johnny to spend part of his week at McMain and part in the transitional day school, his mother said.

It was never clear to the family or hospital staff what the homebound instruction would mean. Ultimately, it didn't matter.

After a couple of weeks at home, Johnny started rocking back and forth one afternoon in the house as he talked about things that happened at school.

Without warning, Johnny exploded.

"It's like something got stuck in his head," his mother said. "He attacked me. He attacked his father."

Johnny returned to the hospital at the recommendation of a child psychologist. And when it came time for his release earlier this month, Wilson said, she looked into placing him in a specialized program at a state hospital.

But even though it seemed likely that Johnny could eventually get a space, he would have to wait for months.

And this time, she said, the Orleans Parish school system did not return the hospital's phone calls, an assertion a system spokesman said officials could not address, again citing legal privacy protections for the student.

Ready to fight

Diagnosed so late in childhood, Johnny has never had extra time to spare.

As the hospital prepared to release him earlier this month, his mother braced herself for a possible fight with the school district or a long period of uncertainty while Johnny stayed at home.

"I do everything I can to help my son," Wilson said. "I don't want him to get hurt. I don't want anyone else to get hurt. (He) is a sweet kid -- 90 percent of the time. I want him in a school setting, but one where he can get help."

A few days after The Times-Picayune contacted the Orleans Parish school district about the family's case, Catherine Wilson received a call from a district official, she said. She told her Johnny could return to McMain, and the district would find him a male, one-on-one aide, because he's less likely to act out in the presence of a man.

At home one recent evening, the boy appeared thankfully oblivious to his mother's worries. Trailing his younger cousin around the house, he appeared interested in nothing beyond being a regular kid -- if one with unusual needs and gifts.

One by one, he listed every job his aunt, cooking dinner at the time, has held in his lifetime.

Wal-Mart. Solos. Sam's. ACS on Canal. ACS in Atlanta.

Pause.

The post office downtown.

Another pause.

That's all.

Who is his favorite singer?

Long pause.

Beyonce.

What is his favorite subject?

Longer pause.

Math.

Would he rather stay at home or go to school?

"Go to school," the boy shot back, without hesitation.

Sarah Carr can be reached at scarr@timespicayune.com or (504) 826-3497.

Categories: Education
Comments

easton89 says...

Reading this story made me incredibly sad for this family. It also made me angry because I also have an autistic son and I know the anger and the frustration of calling every school (AND I MEAN EVERY SCHOOL) in the city including Orleans Parish, Recovery School District, and Charter schools to find resources for my son. Time and time again I was turned away and told there were no resources for my son, despite what they say to the press.

My husband, a former NOPD officer and I relocated our son to Texas. He accepted a position with the local police department and our son is in a school where he is thriving. He is in a small class of four students and he has access to qualified, educated teachers along with speech and occupational therapists.

If the school system continues to keep out children with special needs such as my son, more parents will make the difficult decision to leave New Orleans. Although we miss home, I have no plans in the future to return to New Orleans!!!!!
Posted on 02/24/08 at 11:21PM
tdeesmom says...

I too have been through the frustration with public school systems regarding children on the autism spectrum. My son is now 17. Hats off to Mercy Family Center. My son was five when he was diagnosed at Mercy Family Center. I will never forget how I felt hearing the diagnosis. Full of hope that we could move forward and the resources would be available for my son our journey began. Little did I know I would waste years fighting for an education that did him more damage than good. It is so heart breaking, I too ended up going to school with my little boy everyday. The battle consumes you. Luckily he was accepted into the finest school in New Orleans. He began to learn and I admit he wasn't easy to deal with. There is no easy answer for these children. It is frustrating to ask for help and you would not believe how insensitive people can be. As these children reach their teens it becomes more and more diffficult. It is a shame that my son and others are falling through the cracks. I lost all services I waited so long for in New Orleans due to Katrina. I am now in Florida and back to square one. When will schools and help be available for our children. With the autism rates the way they are so many more children and their families will suffer because there will be so many more families in my situation. My son is now in public high school and has a wonderful advocate who stays on top of things. I am so proud of my son who deals with teasing and bullies everyday and continues on because he wants to graduate. Should your child be diagnosed prepare yourself be informed and gear up to fight the battle of your life. It is an up hill battle. When you see a child acting out in public think twice before making a judgement. I have heard it all. Boy if I had that kid for a week I could straighten him out. The pain and grief associated with autism is forgotten when your child makes even the slightest progress. I wouldn't change my son for anything. He is witty and smart. I will continue fighting for my son and I am confident I have done the best I can do. These children are so misunderstood. Thanks to all at Mercy Family Center. Thanks to the adcocates and Families Helping Families.Love, Hope and Patience are the key. I hope the next generation of children diagnosed with autism have more resources than I did.Our children deserve the help. Parents get out there and be heard. Tommy's Mom

Posted on 02/25/08 at 6:16AM
dmv35 says...

Must be all of us who are no longer in the NO Metro area are reading about we are no longer missing. My son was diagnosed by the Jefferson Parish Public School System back in 1998.
I worked closely wth the schools and Families Helping Families too!
We moved to Connecticut after Katrina and have been here since. He had just started middle school the week Katrina hit.
I had spent months touring schools all of the metro area. Not one private/public school fit his needs. I had to pick the best of the worst.

Here he has thrived.
We lost all of our long awaited services too.
But, the school situation was worth it.
It is hard to watch your child be the quinea pig over and over again. That's what happened in Louisiana.
It makes me sad because I left behind dear friends with children in the spectrum who still attend school in Jefferson & Orleans.
What chance do they really have? They have been struggling....
Posted on 02/25/08 at 6:31AM
fedup9999999 says...

as a social worker in the public school system i can tell you first hand that louisiana refuses to appropriately fill the needs of special needs students. the government refuses to spend the money required to establish the intensive interventions the children need.

Posted on 02/25/08 at 7:10AM
sowkgrad says...

easton89.............I feel your pain. Our son was diagnosed with ADHD, as Johnny was. When we moved to Texas, He was also diagnoed with Autism. He received the wrong diagnosis, no help in the OPSB district, or the doctors there. As you guys read,it took 10 years before the Adolescent Hospital finally properly diagnosed Johnny. It is very sad that our home state don't have the resources or competence to discover this at an early age. We've been to specialist and beyond, still there was nothing. It took the doctors here in Texas, months not years to help us. My son started showing signs of autism at age 7. Now He is in a great school, with resources and help from great staff. Katrina may have been a disaster, but it changed my son life, as well as many others(for the best). We will not return, as long as there is no help for the children of the future. Oh! BTW, the OPSB is a joke and always will be, as long as their is interdepartmental in-fighting (I used to work there).

Posted on 02/25/08 at 7:48AM
sowkgrad says...

I forgot to mention our son is 14.5 and in High School now, with alot of friends. Anyone familiar with autism, knows social skills is a major entity with autism. We are no longer crying and worrying, if he's going to get through the day. We're finally happy!!!!!!!

Posted on 02/25/08 at 7:57AM
bdufrene says...

the article states that there is no consensus on treatment for autism...have to disagree. years and years of research indicate that treatment based on the principles of applied behavior analysis can be effective across a range skill areas (e.g., communication, social skills). unfortunately, in louisiana and mississippi, we are severely lacking in early diagnosis and effective treatment.

Posted on 02/25/08 at 8:40AM
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