A blog about resources for autism and care and treatment.

Thursday, December 29, 2011

Dr. Doreen Granpeesheh, Real American Story - Helping Children with Autism

FOX News national network has named ACT Today! Founder & President Dr. Doreen Granpeesheh as a “Real American Hero”.

They recently interviewed her for an all inclusive story on her life, her journey and her mission in helping children with autism.

I was honored to be a part of the segment and more honored to work with such a phenomenal woman!
Please watch the news segment with us.

Then, share the link with your friends, family and colleagues.
http://www.realamericanstories.com/putting-the-pieces-together-autism-dr-doreen-granpeesheh-joe-mantegna

Some Experts Worried Over Revised Autism Guidelines

  • 640_Autism.jpg
The New Year hasn’t even started yet, but some parents are already looking ahead to 2013.

In May 2013, the American Psychiatric Association will release a new, revised set of guidelines for diagnosing someone with autism spectrum disorder.
And some experts don’t think this is a good idea.

Dr. Keith Ablow, a psychiatrist and Fox News contributor, said rather than having separate disorders in the autistic “arena,” the association is proposing one name for all such disorders, which include repetitive behavior (autism spectrum disorder, pervasive development disorder-not otherwise specified and Aspberger’s).

“They are monkeying with the definition of how severe symptoms must be to fit into a new and broad category called autism spectrum disorder, rather than autism and Aspberger’s, et cetera,” Ablow said.

The association’s decision to adopt stricter standards stems from the debate of how to define disorders, so that they can embrace the proper populations, while triggering insurance company reimbursements, said Ablow, who disagrees with a change in diagnostic manual so soon.

"I don't understand how a professional association can meet every few years and declare that some disorders are not in existence anymore and invent new ones to replace them," he added.

These new guidelines would place an emphasis on preservative and repetitive behaviors – but many children who were originally diagnosed with autism may be reclassified.

Ablow said this can leave some people who are still suffering with some of the symptoms or less severe symptoms out in the cold.

“If we don’t loosen it a little bit, I suspect that some of these high-functioning kids may actually either get shifted into a different diagnosis,” said Dr. Thomas Frazier, who treats children with autism at the Cleveland Clinic Children’s Hospital. “So, for example, they might move to a new diagnosis called social communication disorder.”

Frazier said he is also worried about children who are already classified, and how the reclassification could affect the educational assistance they receive at school.

“Your educational classification really indicates what kind of services and accommodations you're going to get at school,” he said. “And autism is one of the highest educational classifications; so many people with autism get a significant amount of services through their school. I think the worry by a lot of parents is that ‘if my child loses that classification what happens?’ And we don’t know what’s going to happen yet.”
Read more: http://www.foxnews.com/health/2011/12/28/some-experts-worried-over-revised-autism-guidelines/#ixzz1hwHbFwFz

Tuesday, December 27, 2011

FREE Autism Seminar on Managing Challenging Behaviors


This is a great opportunity for parents and caregivers to learn some valuable tips on how to manage challenging behaviors in children with autism spectrm disorders.
If you live in the Boston area, please consider registering to attend this free event.


Thursday, December 22, 2011

The Happiest Time of the Year?

Maybe…. Maybe Not!


Maybe like me, you have heard Karen Carpenter sing “The Christmas Song” one too many times, and feel like “Grandma Got Run Over By a Reindeer” is a more appropriate song to match your mood. Don’t worry, I will not ask you to make yet another donation for a child in need, as you have probably received countless emails asking you for the same thing from other non-profits, and you probably are deleting them from your inbox on first sight.


Now that I have vented my inner Scrooge, I will take a moment to sincerely say “THANK YOU!” and express my gratitude to everyone who supported us here at ACT Today! in a myriad of ways.



I am talking about more than donating money -- maybe you spread the word about our mission, volunteered at an event, or simply took the time to read about us and become more educated about autism and the need to help families struggling to find and access proper care and treatment for their children.

Because of you, we had our best year ever!

Here is a list of some of our accomplishments in 2011:


  • ACT Today! distributed a total of $434,000 to 388 families. This was a growth of 600% from the previous year!
  • We ACT Today for Military Families 5k/10k and ONEHOPE family festival which raised $99,000 and had 1,200 participants
  • Started our “Assisted Technology Program” with IPad grants.
  • Launched “ACT Today! Espanol” to assist Latino families struggling with the diagnosis of autism


Now that I look at the list, I must say, I am very thankful that we had such an amazing year with your support.


On that note, I think I’ll go listen to Karen Carpenter’s Christmas CD and pour myself an eggnog.


Happy Holidays!


Nancy Alspaugh-Jackson

Executive Director, ACT Today!




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Friday, December 16, 2011

Autism hidden in plain sight

Here's the 4th part of the 4 parent autism series the Los Angeles Times newspaper ran. Please share your thoughts with us on the comment section below.

Discovering Autism

Autism hidden in plain sight

As more children are diagnosed with autism, researchers are trying to find unrecognized cases of the disorder in adults. The search for the missing millions is just beginning.


Howard McBroom, shown riding the bus, worked for 26 years as a security guard. It wasn't until he lost that job in 2003 that the Indiana University graduate learned he was autistic. He was 49 years old. (Francine Orr / Los Angeles Times)

Howard McBroom, shown riding the bus, worked for 26 years as a security guard. It wasn't until he lost that job in 2003 that the Indiana University graduate learned he was autistic. He was 49 years old. (Francine Orr / Los Angeles Times) More photos

December 16, 2011

Last of four parts

When autism researchers arrived at Norristown State Hospital near Philadelphia a few years ago, they found a 63-year-old man who rambled on about Elvis Presley, compulsively rocked in his chair and patted the corridor walls.

Discovering Autism

The series at a glance:

Ben Perrick, a resident of the psychiatric institution for most of his life, displayed what the University of Pennsylvania researchers considered classic symptoms of autism. His chart, however, said he was schizophrenic and mentally retarded.

Delving into the file, the researchers learned that as a 10-year-old, Perrick had seen Dr. Leo Kanner, the psychiatrist who discovered autism. In his notes from 1954, Kanner described Perrick as “a child who is self centered, withdrawn, and unable to relate to other people,” and recommended that he be committed.

Later, other doctors relabeled Perrick. The autism diagnosis was forgotten.

The researchers found 13 other patients with unrecognized autism in the Norristown hospital — about 10% of the residents they evaluated. It was a sign of how medical standards and social attitudes toward the disorder have shifted.

Over the last two decades, estimates of the autism rate in U.S. children have climbed twentyfold. Many scientists believe the increase has been driven largely by an expanded definition of the disorder and more vigorous efforts to identify it.

Scientists are just beginning to find cases that were overlooked or called something else in an earlier era. If their research shows that autism has always been present at roughly the same rate as today, it could ease worries that an epidemic is on the loose.

By looking into the past, scientists also hope to deepen their understanding of how autism unfolds over a lifetime.

What happened to all the people who never got diagnosed? Where are they?

Like Perrick, who died in 2009, some spent their lives in institutions. Mental hospitals have largely been emptied over the last four decades, but the remaining population probably includes about 5,000 people with undiagnosed autism, said David Mandell, a psychiatric epidemiologist who led the Norristown study.

Many more are thought to be in prisons, homeless shelters and wherever else social misfits are clustered.

But evidence suggests the vast majority are not segregated from society — they are hiding in plain sight. Most will probably never be identified, but a picture of their lives is starting to emerge from those who have been.

They live in households, sometimes alone, sometimes with the support of their parents, sometimes even with spouses. Many were bullied as children and still struggle to connect with others. Some managed to find jobs that fit their strengths and partners who understand them.

If modern estimates of autism rates apply to past generations, about 2 million U.S. adults have various forms of it — and society has long absorbed the emotional and financial toll, mostly without realizing it.

Finally, an explanation

Ben Perrick is shown with his father, Isadore, and mother, Bernice. Perrick spent most of his life at Norristown State Hospital near Philadelphia. Researchers interviewed him when he was 63 and found classic symptoms of autism. His chart, however, said he was schizophrenic and mentally retarded. Perrick died in 2009. (Joan Bothell)

Ben Perrick is shown with his father, Isadore, and mother, Bernice. Perrick spent most of his life at Norristown State Hospital near Philadelphia. Researchers interviewed him when he was 63 and found classic symptoms of autism. His chart, however, said he was schizophrenic and mentally retarded. Perrick died in 2009. (Joan Bothell) More photos

The search for the missing millions is just beginning.

The only study to look for autistic adults in a national population was conducted in Britain and published in 2009. Investigators interviewed 7,461 adults selected as a representative sample of the country and conducted 618 intensive evaluations.

The conclusion: 1% of people living in British households had some form of autism, roughly the same rate that the U.S. Centers for Disease Control and Prevention estimates for children in America today.

The British study found it didn't matter whether the adults were in their 20s or their 80s. The rate of autism was the same for both groups.

“That would seem to imply the incidence has not changed very much,” said Dr. Terry Brugha, a professor of psychiatry at the University of Leicester who led the study. He added that the findings were not conclusive and more research is needed.

Document: An early case of autism

Read more »

None of the adults included in the study had an existing diagnosis of autism, though in a few instances relatives told researchers that they had suspected it.

In one case, a man said he had asked his doctor about the possibility but was told that a diagnosis in middle age would be useless.

After all, he had gotten this far without it.

Still, as more children are being diagnosed with autism, more adults are wondering if they have it too.

Karl Wittig, a retired engineer from New York, had always questioned why so few social skills came naturally to him.

A diary his mother kept in the 1950s suggests he was not an ordinary child.

“This last few weeks, he doesn't pile the blocks anymore,” she wrote when he was 2. “He likes to put one next to the other, making a big row of 48.”

Two years later, he talked nonstop about wires, switches, light bulbs and Thomas Edison.

Wittig went on to earn undergraduate and master's degrees from Cornell University and New York University in physics, electrical engineering and computer science. In the research laboratories where he worked, he felt he fit in.

“I went into a field full of eccentric people,” Witting recalled. “I was just another eccentric person.”

Wittig said he eventually figured out how to behave in social situations — to refrain from correcting other people's mistakes, flaunting his math abilities or rambling on about his own interests. He married a former nun 18 years his senior. She died of cancer after two decades together. Wittig described the marriage as happy.

Still, he wanted to understand what made him different. So at age 44, he brought his mother's diary to a psychiatrist, who evaluated him and concluded he had Asperger's disorder, a mild form of autism.

“I had been waiting for an explanation for these issues my entire life,” recalled Wittig, now 55, who lives alone in the apartment he once shared with his wife. “Finally, here it was.”

Passing for ‘normal’

Mark Teufel, 57, learned he had Asperger's disorder after his nephew was diagnosed with autism in 1999. Teufel says he has adjusted to his condition, even to other people's misconceptions about it: “Most of the time I am treated like I am stupid. But I am not.” (Francine Orr / Los Angeles Times)

Mark Teufel, 57, learned he had Asperger's disorder after his nephew was diagnosed with autism in 1999. Teufel says he has adjusted to his condition, even to other people's misconceptions about it: “Most of the time I am treated like I am stupid. But I am not.” (Francine Orr / Los Angeles Times) More photos

On the high-functioning end of the autism spectrum, it is possible to pass for “normal,” or some semblance of it. Over time, experts say, many people with the disorder adapt to their surroundings. It helps to find a niche, a constructive interest or a job.

For some, the key is finding a guardian angel.

Mark Teufel said he could barely survive without Loraine Girard, a divorcee from Texas with whom he has lived for the last 17 years.

They met at the Magic Castle, a Hollywood club for magicians. Teufel, 57, who has a wispy beard and gray ponytail, makes contraptions used in tricks — polished works of art crafted from wood and metal.

He and Girard live in a rent-controlled apartment in Santa Monica. Tools, spare parts and papers are spread over every surface, with towers of boxes and plastic bins rising out of the rubble to create an indoor metropolis. It has reduced the hallway to a crawl space, cut off access to one bedroom and rendered the oven unusable.

“He needs everything out in the open to know where it is,” Girard explained.

Teufel said he can't fill out a form, write a check or follow a news broadcast without Girard's help.

During a childhood that he described as “full of misery,” he said he was often picked on. At home, he would retreat to his room to build toothpick houses or perfect magic tricks.

When he graduated from Santa Monica High School in 1973, his father put him to work in the family business, a jewelry factory where he still works part-time, filing and polishing rings.

In 1999, his nephew was diagnosed with autism. Urged by his brother, Teufel went to a psychologist, who diagnosed Asperger's disorder and provided counseling for several years. He's adjusted to his condition, he says, even to other people's misconceptions about it.

“Most of the time I am treated like I am stupid,” Teufel said, “but I am not.”

Dealing with curveballs

To curb his sense of isolation, 56-year-old Howard McBroom, shown hugging Dee Wallace, became active with SpiritWorks Center for Spiritual Living in Burbank. “I am accepted there,” he said. “I am loved. I am the greeter. And that's such a great place to be.” (Francine Orr / Los Angeles Times)

To curb his sense of isolation, 56-year-old Howard McBroom, shown hugging Dee Wallace, became active with SpiritWorks Center for Spiritual Living in Burbank. “I am accepted there,” he said. “I am loved. I am the greeter. And that's such a great place to be.” (Francine Orr / Los Angeles Times) More photos

Howard McBroom might never have been noticed but for a turn of bad luck.

His problems early in life — a speech impediment, chronic clumsiness — never raised great concerns, though they led to relentless bullying. He was a decent student and went on to earn a history degree at Indiana University, where he kept to his books and made few friends.

After graduation, he moved west and found work as a security guard. For the next 26 years, he worked the graveyard shift and lived in a Burbank apartment. He wasn't bothered by the hole in the floor or the festering mold.

He rarely traveled, except for a weekend bus trip once a year to watch an arm-wrestling competition in Petaluma, Calif.

Video: Howard McBroom, 56

Howard McBroom, 56, squeaked by for decades on his own before learning he had autism.

As his sense of isolation and depression mounted, he became deeply involved in a neighborhood church.

He fantasized about finding a girlfriend or just going on a date, but had no idea how. “I was well aware that I was in a world full of people more capable than me,” he said.

Then, in 2003, the security company went out of business, and he was unable to find a new job. He fell behind on his rent. He feared becoming homeless.

A church member introduced him to an advocate for the disabled, who suggested that he be evaluated to see if he qualified for social services.

Nearly half a century into his life, he was told he had autism. “I think I'm somewhere close to the outer range,” said McBroom, now 56. “Not severely autistic but definitely not normal.”

Graduation from school, the loss of a job, the loss of a parent or any sudden change can unhinge someone with autism.

“If there is a curveball thrown, they have trouble reacting to that,” said John McGonigle, who heads an autism center at the University of Pittsburgh and who has diagnosed dozens of adults, including, recently, a 76-year-old.

“They don't make those adjustments easily,” he said. “They don't problem-solve.”

Had therapies been available when they were children, they might have had better lives, McGonigle said.

There has been little research into what kinds of treatment work best in adulthood. McGonigle has been training therapists to recognize and treat the conditions that often accompany autism, such as depression, anxiety and attention disorders.

Some people with the disorder simply need a “life coach,” he said.

In McBroom's case, once he had a diagnosis, the Lanterman Regional Center in Los Angeles found him federally subsidized housing and a social worker. He started reading books about autism. He reminded himself to make eye contact when he spoke to people.

In 2007, he joined the Lanterman board, representing clients of the center, which arranges state-funded services for the developmentally disabled.

One of his priorities is identifying more autistic people who have been missed.

Enormous concerns

Jeanne Duquette, 49, cuddles with Sakura, her Labradoodle. She was 39 when her mother read a newspaper article about autism and took her to a specialist, who diagnosed it immediately. (Francine Orr / Los Angeles Times)

Jeanne Duquette, 49, cuddles with Sakura, her Labradoodle. She was 39 when her mother read a newspaper article about autism and took her to a specialist, who diagnosed it immediately. (Francine Orr / Los Angeles Times) More photos

Over the next decade, hundreds of thousands of children with autism will become adults. How they will fare — and how much it will cost to take care of them — is a matter of enormous concern for their families and for policymakers.

There is another group of people who are at least as needy: Undiagnosed baby boomers who soon will face life without the parents who have always supported them.

“Those are the people on the doorsteps of the service system,” said Marsha Mailick Seltzer, an autism expert at the University of Wisconsin. “They may not have a diagnosis, but they are there.”

An unknown number of families will face the predicament of Kay Duquette, 83, and her autistic daughter, Jeanne, 49.

Jeanne Duquette, 49

See all »

“What will happen to her after I am gone?” said Kay, who is deaf and in failing health.

Jeanne's older brother, Doug, a tree care specialist who lives with them in Irvine, said he will eventually be responsible for her.

But Jeanne, who receives a monthly disability check, said she can imagine living by herself in an apartment with a few dogs.

“Somebody would have to help her with her checkbook,” said her mother. “And I don't trust anybody. She doesn't know if a person has good intentions or bad intentions.”

As a child, Jeanne was taken from specialist to specialist. She was tagged with a multitude of labels, none of them quite right. At first doctors ascribed her difficulties to “slow development” and “extreme shyness.”

Teachers tried to help. “As you know, difficulty with language is central for Jeanne, and I have encouraged just as much verbalization as possible,” one teacher wrote in 1969, when Jeanne was 6.

Later came diagnoses of depression, dyslexia and possible paranoia.

Doctors and teachers told her mother that Jeanne would eventually catch up.

In some ways, she did. At University High in Irvine, she routinely landed on the honor roll, despite her inability to do basic math. On one standardized test, she scored in the 93rd percentile in reading. She played viola in the orchestra and stacked books in the library.

She had only one friend — a boy who shared her interest in “Star Trek” — and he moved to Kansas.

Making matters worse, her parents were going through a divorce. At one point, she cracked, threatening her parents with a kitchen knife, which landed her in a mental ward for two weeks.

Later, she tried college, taking all the writing classes she could. But she dropped out after failing algebra and has lived at home ever since, without friends or a job.

Jeanne was 39 when her mother read a newspaper article about autism and took her to a specialist, who diagnosed it immediately.

Today she lives for her routines and obsessions: the Civil War histories and fantasy novels neatly arranged on a shelf in her room; the massive jigsaw puzzles she works row by row; chores such as loading the dishwasher and cooking the side dishes for dinner; ESPN “Sports Center” and the sports section of the Los Angeles Times.

Her only regular contact with outsiders is when she walks Sakura, her Labradoodle, with neighbors each afternoon.

“I just listen to people talk about their lives,” she said.

Looking back, Kay Duquette wonders how things would be different if her daughter had been diagnosed as a child.

What would her life have been like?

alan.zarembo@latimes.com


About the series:

Rates of autism have exploded over the last 20 years. In exploring the phenomenon and its repercussions, Los Angeles Times staff writer Alan Zarembo interviewed dozens of clinicians, researchers, parents and educators and reviewed scores of scientific studies. Zarembo, along with Doug Smith and Sandra Poindexter of the Times data team, also analyzed autism rates and public spending on autism in California.

Wednesday, December 14, 2011

TWEET to Help Military Children with Autism

TWEET2GIVE HOLIDAY CAMPAIGN CALLS ON PUBLIC
TO ACT TODAY AND HELP MILITARY CHILDREN WITH AUTISM
ACT Today! is using social media giant Twitter to raise much needed funds for its national Autism Care and Treatment for Military Families (ATMF) campaign which benefits military children with autism. The initiative calls on two teams – Team Naughty and Team Nice – to get as many Twitter followers to spread the word, and make online donations during December 14 through December 30, 2011.
All donations must be made at bit.ly/s3rnQJ.
According to recent figures from The Department of Defense, 1 in every 88 military children has autism. Autism is more prevalent than juvenile diabetes, pediatric cancer and childhood AIDS. Military families who have children with autism are fighting 2 battles -- one for their country, and the one for care and treatment for their children.
“We currently have an autism crisis,” says Andrekka Lanier, ATMF Campaign Director, Marine wife and mother of a child with autism. “ACT Today!’s Tweet2Give campaign will not only draw more awareness to the plight of military children with autism, but also help raise funds for necessary care and treatment these children need to reach their full potential.”
Anyone with access to a computer can participate, by setting up a Twitter account. Then, doing the following steps:

Step 1
Before tweeting please add @Act_Today and @TweetTwoGive to the people you follow on Twitter.

Step 2
Announce to your followers that you have joined the contest and include the link to the ACT Today! for Military Families video at bit.ly/s3rnQJ.
SAMPLE TWEET: Just joined the “Nice Team” to raise $$ for ACT Today! for Military Families. The fundraising contest starts Dec 14 - bit.ly/s3rnQJ

Step 3
During the 2nd week of the contest send your donation request tweet again.

SAMPLE TWEET: The contest for ACT Today! For Military Families starts now. Please give what you can and retweet - bit.ly/s3rnQJ

US Marine Shares Personal Story of Being Deployed While Learning of Son's Autism Diagnosis

Watch this Morning @ 11am (PST) at www.act-today.org

United States Marine Captain Jermaine Cadogan joins Shannon and Nancy live on the show to talk about being deployed overseas while learning of his son’s autism diagnosis.

It’s a gripping segment you won’t want to miss!
Link
Plus, enter to win His & Hers jewelry from Isabella Emporium (www.isabellaemporium.com)
Watch Let’s Talk Autism with Shannon & Nancy
@ 11am (PST) today!
1st caller during the segment WINS – (408) – 475-4557
Isabella Emporium…jewelry of unsurpassed elegance, style, beauty and quality
***
Let’s Talk Autism with Shannon & Nancy
THIS Wednesday @ 11am (PST) - www.act-today.org


Let’s Talk Autism with Shannon & Nancy is a weekly hour long show that features Nancy Alspaugh-Jackson and Shannon Penrod, both parents of a child with autism, sharing interesting news from the autism community, the most current autism resources for families and ways to have fun while making a difference.Watch with us, every Wednesday @ 11am (PST) on www.act-today.org.

Tuesday, December 13, 2011

Warrior Parents Fare Best in Securing Autism Services

On Monday (12/12), we shared the first part of Los Angeles Times special series report on autism. Here is part two. Please share your thoughts with us in the comment section below...


DISCOVERING AUTISM

Warrior parents fare best in securing autism services

Public spending on children with autism in California varies greatly by race and class. A major reason: Not all families have the means to battle for coveted assistance.

Behavior specialist Michelle May tries to calm down 13-year-old Jonah Funk after he starts biting his hand while working with Sarabeth Rothfeld, in back, at Hesby Oaks School in Encino. (Francine Orr / Los Angeles Times)

Behavior specialist Michelle May tries to calm down 13-year-old Jonah Funk after he starts biting his hand while working with Sarabeth Rothfeld, in back, at Hesby Oaks School in Encino. (Francine Orr / Los Angeles Times) More photos

December 13, 2011

Second of four parts

From the day her son was diagnosed with autism nine years ago, Stacie Funk has made it her full-time job to find him the best possible help. Hiring lawyers and experts to press her case, she established herself as a mother whose demands could not easily be dismissed.

DISCOVERING AUTISM

The series at a glance:

Sunday: An epidemic of disease or of discovery?

Today: Services go to those who fight hardest

Thursday: Families chase the dream of recovery

Friday: Finding traces of autism in earlier eras

About the series | Discuss

The result has been a bounty of assistance for Jonah: A behavioral therapist who works with him at home and comes along on family outings, a personal aide at school and specialists to design his curriculum, improve his speech and refine his motor skills.

So far, the state of California and the Los Angeles Unified School District have spent at least $300,000 on specialized services for Jonah.

Now 13, he bites his hands, pinches his younger siblings and is easily flustered by changes in routine. But his mother is proud of the progress he's made — his ability to express his needs, read aloud and surf the Internet for movie trivia.

The outside support, she said, helps hold the family together.

“Am I more entitled than someone else?” said Funk, of Encino, whose husband owns a trophy-parts business. “No. But that's how the system is set up.”

Getting a wide array of help for an autistic child can require waging a small war with the gatekeepers of state and school district services. But not all parents have the time and resources to fight the way Funk did. That contributes to striking disparities in how services are distributed.

Public spending on autistic children in California varies significantly by racial or ethnic group and socioeconomic status, according to data analyzed by the Los Angeles Times.

Jonah Funk, 13

Jonah Funk, 13, was diagnosed with autism nine years ago. His mother, Stacie, says she often describes herself as his eyes, his ears and his voice. "I want him to be treated fairly," she said. "I want him to receive the things he needs."

For autistic children 3 to 6 — a critical period for treating the disorder — the state Department of Developmental Services last year spent an average of $11,723 per child on whites, compared with $11,063 on Asians, $7,634 on Latinos and $6,593 on blacks.

Data from public schools, though limited, shows that whites are more likely to receive basic services such as occupational therapy to help with coordination and motor skills.

The divide is even starker when it comes to the most coveted service — a behavioral aide from a private company to accompany a child throughout each school day, at a cost that often reaches $60,000 a year.

In the state's largest school district, Los Angeles Unified, white elementary school students on the city's affluent Westside have such aides at more than 10 times the rate of Latinos on the Eastside.

It might be tempting to blame such disparities on prejudice, but the explanation is more complicated.

“Part of what you're seeing here is the more educated and sophisticated you are, the louder you scream and the more you ask for,” said Soryl Markowitz, an autism specialist at the Westside Regional Center, which arranges state-funded services in West Los Angeles for people with developmental disabilities.

In both the developmental system and the schools, the process for determining what services a disabled child receives is in essence a negotiation with the parents.

Because autism has come to encompass such a broad range of children — from those who never learn to speak or use a toilet to math whizzes unable to make friends — there is often bitter disagreement over what a child needs and who should pay.

Racial disparities

The level of autism services also varies by race and ethnicity. Here are figures on average spending per autistic child across the developmental services system.

Source: California Dept. of Developmental Services. Graphics reporting by Alan Zarembo
Data analysis by Sandra Poindexter

Thomas Suh Lauder, Doug Stevens Los Angeles Times

The financial squeeze on school and state budgets has turned up the temperature, leaving officials caught between legal mandates to help autistic children and pressure to curb spending.

In California last year, autism accounted for one tenth of special education enrollment but one third of the disputes between schools and parents on record with the state.

Carmen Carley, a professional advocate for families seeking public services, said parents who present themselves as formidable opponents fare best.

“Wear a fake diamond ring,” she tells mothers who don't have a real one. “Make them think you're ready to fight. Don't show them you're weak. Don't show them you're tired.”

Carley, of Torrance, gained her expertise by advocating for her own son, Collin, now 14. He received state-funded behavioral therapy for more than eight years as a result of her efforts, which included taking the officials at the Harbor Regional Center in Torrance before a judge.

In contrast to warrior parents, some families simply accept what they are offered.

Gissell Garcia of South Los Angeles was diagnosed with autism at age 3, early enough that intensive therapies might have helped. But her parents, Mexican immigrants who support themselves on the father's factory job, say that neither L.A. Unified nor state officials ever mentioned the possibility.

The couple requested a one-on-one aide for Gissell. She had a habit of inserting objects into her ears and nose, and they worried she might hurt herself. But school officials said there were enough staff members in her special education classroom to keep an eye on her.

For several years, Gissell has received speech therapy for 30 minutes a week during school.

“I didn't ask for anything more,” her mother, Yolanda Ortega, said in Spanish. “I accepted it because I didn't know. I thought she would eventually talk.”

Now 11, Gissell has learned to point when she wants something. The sounds she makes are unintelligible.

The Lanterman Act

Gissell Garcia, 11, stands in her South L.A. kitchen with her mother, Yolanda Ortega. Gissell was diagnosed with autism when she was 3, early enough that intensive therapies might have helped. But her parents say that neither L.A. Unified nor state officials ever mentioned the possibility. Now the sounds that Gissell makes are unintelligible. (Francine Orr / Los Angeles Times)

Gissell Garcia, 11, stands in her South L.A. kitchen with her mother, Yolanda Ortega. Gissell was diagnosed with autism when she was 3, early enough that intensive therapies might have helped. But her parents say that neither L.A. Unified nor state officials ever mentioned the possibility. Now the sounds that Gissell makes are unintelligible. (Francine Orr / Los Angeles Times) More photos

In the 1960s, a group of mothers from Marin County campaigned for state legislation to help them raise their mentally retarded children at home.

The result, the Lanterman Act, ended the long-standing practice of warehousing people with developmental disabilities in state hospitals and provided state-funded services tailored to individual needs.

Few other states have anything like it. Services are free for life, regardless of a family's means. Last year the system cost taxpayers about $4 billion, including $638 million for services for autistic clients.

The money flows from the state Department of Developmental Services to service providers through 21 regional centers, nonprofit agencies that function as case managers. They determine whether a child has a qualifying disability and what help to provide.

Uneven spending

State-funded autism services are supposed to be awarded based on each child's needs. But a Times analysis found that average spending per child varies widely among the state's 21 regional centers for developmental services.

Source: California Dept. of Developmental Services. Graphics reporting by Alan Zarembo
Data analysis by Sandra Poindexter

Thomas Suh Lauder, Doug Stevens Los Angeles Times

Though all regional centers are supposed to follow the same criteria, average spending per child varies widely from place to place and race to race, according to data obtained by The Times under the California Public Records Act.

Last year, the system served 16,367 autistic children between the critical ages of 3 and 6, spending an average of $9,751 per case statewide. But spending ranged from an average of $1,991 per child at the regional center in South Los Angeles to $18,356 at the one in Orange County.

At 14 of the 21 centers, average spending on white children exceeded that for both blacks and Latinos.

Through a spokeswoman, officials at the Department of Developmental Services declined to discuss the disparities. In written statements responding to questions, they said the department has long been aware of such differences and attributed them to language and cultural barriers, as well as to shortages of service providers in certain areas.

Marsha Mitchell-Bray, director of community services at the South Central Los Angeles Regional Center, which serves mostly Latinos and blacks, said these families often feel stigmatized by an autism diagnosis and take only minimal advantage of the services available.

“Even though they have the diagnosis, they still aren't coming to terms with it,” she said.

At the Frank D. Lanterman Regional Center, which serves a swath of Los Angeles County stretching from Hollywood to Pasadena, spending on white youngsters with autism averaged $12,794 per child last year — compared with $9,449 for Asians, $5,094 for blacks and $4,652 for Latinos.

Diane Anand, the executive director, said many minority children enrolled in the system receive few or no services because their parents can't participate as required in orientations or therapy sessions.

Anand faulted state officials for failing to research the causes of the disparities.

“I don't know what you do about some of this,” she said. “This is an issue that has bedeviled our service system for years and years.”

A personal aide

Steve Staszower dries off his daughter Samantha. He and his ex-wife had to fight to keep a personal aide for the 8-year-old. (Francine Orr / Los Angeles Times)

Steve Staszower dries off his daughter Samantha. He and his ex-wife had to fight to keep a personal aide for the 8-year-old. (Francine Orr / Los Angeles Times) More photos

Of all the school services available for autism, few are as desirable as a behavioral aide — a full-time assistant to shadow a child from class to class, help with assignments, curtail troublesome conduct and foster good relations with peers.

Samantha Staszower of Westchester had such an aide in kindergarten, provided by L.A. Unified through a private company.

Samantha Staszower, 8

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But as she prepared to enter first grade last year, school officials informed the family that she was no longer eligible and that district staff could keep her focused and well-behaved.

“They're messing with the wrong set of parents,” said her father, Steve Staszower. A lawyer himself, he looked for a special education attorney and began selling off his treasured comic book art collection “to build a war chest.”

On the autism spectrum, Samantha was deemed high-functioning — talkative, affectionate and too bright for special education — but far below average socially. She struggled to sit still and relate to other children, and she spoke of little but reptiles.

“I won't throw her to the wolves,” said her mother, Tracy Jacobson, an elementary school teacher in another district who is divorced from Samantha's father.

By fall 2010, the family was preparing to take the matter before one of the state's administrative law judges. Then the district backed down. Samantha, now 8, is in second grade with a personal aide firmly in place.

As more autistic children are moved into regular classrooms, more parents are demanding such assistants to keep their children engaged and well-behaved.

L.A. Unified expects to spend more than $50 million this school year to provide 1,182 autistic students with aides from private companies. Those students represent 11% of the district's autism cases.

District statistics suggest need is not the only factor in determining who receives the service.

In elementary schools, where private aides are most common, 31% of white students with autism have one this school year — roughly twice the rate for Asians and blacks and 3 1/2 times that for Latinos.

Individual attention

Like other school districts, L.A. Unified pays for one-on-one personal aides for some autistic children. White students in affluent areas are more likely to have them.

Source: Los Angeles Unified School District. Graphics reporting by Alan Zarembo
Data analysis by Doug Smith and Sandra Poindexter

Los Angeles Times

Reliance on such aides varies dramatically by the district's eight geographic zones. The wealthier the area, the more likely students are to have private aides.

Among the 238 white elementary school students with autism in Local District 3 on the Westside, 42% have private aides.

In Local District 5 on the Eastside, just 4% of the 560 Latino students with autism have them.

Areva Martin, a special education attorney who has an autistic son, said the statistics reflect not just the ability of wealthier parents to lobby for services, but also an “institutional bias.”

Based on past experience with such families, schools officials are more likely to offer a higher level of service upfront, Martin said. In other words, affluent, educated parents have paved the way for others like themselves.

Martin said she doesn't fault those parents; she just wishes all autistic children had the same opportunity.

L.A. Unified officials offered a similar explanation for the disparity. As parents successfully lobbied for outside aides, the idea spread, and in certain schools it became standard practice to offer them.

“Parents learned from each other,” said Nancy Franklin, a top special education administrator. “It became a cottage industry in LAUSD.”

The district is trying to break the pattern by persuading parents that its own staff can meet children's needs in many cases.

“We're paying lots of money for services that are of questionable value,” said Eileen Skone-Rees, who oversees the district's contracts with companies that supply one-on-one aides.

Pushing back

Elizabeth Castillo is comforted after she overheard someone making fun of her autistic son, Jese, before his fifth-grade graduation in South L.A. (Francine Orr / Los Angeles Times)

Elizabeth Castillo is comforted after she overheard someone making fun of her autistic son, Jese, before his fifth-grade graduation in South L.A. (Francine Orr / Los Angeles Times) More photos

By the time Jese Castillo was 5, it was clear he was profoundly autistic.

But when his mother, Elizabeth, took him to the regional center in South L.A., she was told no help was available, she said. “They told me Arnold Schwarzenegger cut services for the disabled.”

At his elementary school in South Los Angeles, Jese was enrolled in a special education class and received speech therapy for 30 minutes a week.

Jese Castillo, 11

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He made little progress. He could say just eight words, and he never learned how to brush his teeth, draw a circle or put numbers or letters in order.

He seemed to have no sense of danger and once nearly ran off the edge of a second-story balcony, his mother said. She pleaded with L.A. Unified officials to provide an aide for his safety.

“They said no, because he wouldn't become independent,” she said.

A few years ago, some Spanish-speaking mothers with autistic children began meeting in a storage room behind one of their houses. Castillo joined them. At first, they traded tips on communicating with their children. Eventually, they started discussing how to get better services. One mother brought her lawyer to a meeting.

The attorney, Edwin Egelsee, takes only cases he believes he can win, knowing that when he does, the district will pay his bill. This spring, he reviewed Jese's records and filed a formal complaint.

In an agreement reached through mediation, Jese, now 11, was granted a behavioral aide starting this fall.

He has learned to say a few more words: shampoo, open and shorts. His mother hopes he will learn to write his name someday.

“For six years they didn't listen to me,” she said of school officials. “I had to get a lawyer.”

alan.zarembo@latimes.com

Sidebar: Why autism? | Videos: Living with autism | Interactive: Diagnosing autism

Timeline: Key moments | Database: California school rates | Map: Rates in U.S. states

About the series:

Rates of autism have exploded over the last 20 years. In exploring the phenomenon and its repercussions, Los Angeles Times staff writer Alan Zarembo interviewed dozens of clinicians, researchers, parents and educators and reviewed scores of scientific studies. Zarembo, along with Doug Smith and Sandra Poindexter of the Times data team, also analyzed autism rates and public spending on autism in California.