Siblings of the Mentally Ill Often Feel Forgotten

The devastating effects of mental illness have been well documented in films, books and academia. But until recently there has been little said about the sisters and brothers of the mentally ill. Now, researchers are starting to look at what they’re calling the “well sibling” syndrome.

Copyright © 2007 National Public Radio®. For personal, noncommercial use only. See Terms of Use. For other uses, prior permission required.

JOHN YDSTIE, host:

This is WEEKEND EDITION from NPR News. I’m John Ydstie.

The devastating effects of mental illness have been well documented in films, books and academia. But until recently, there’s been little said about the sisters and brothers of the mentally ill. Now, researchers are starting to look at what they’re calling the well sibling syndrome.

Karen Brown of American Radio Works has a report.

KAREN BROWN: In families where mental illness hits early, the entire household feels the impact.

Ms. DEB STANAS (Mother): I said we don’t have any more soup. Eat it or don’t have any.

Ms. OLIVIA STANAS (8-year-old Daughter with Bipolar Disorder): (Unintelligible).

Ms. D. STANAS: Eat what you have. Okay?

Ms. O. STANAS: Eat what I have. (unintelligible) anymore.

Ms. D. STANAS: Eat and take what you have or don’t have any.

(Soundbite of dropped utensils)

Ms. D. STANAS: And now you can pick that up too.

Ms. O. STANAS: No.

BROWN: This untold is a relatively calm afternoon at the Stanas household in southern New Hampshire. Eight-year-old Olivia is bounding between the kitchen, for she’s demanding a snack from her mother Deb, and the living room where her two sisters are doing homework and playing computer games.

Two years ago, Olivia was diagnosed with bipolar disorder – an illness characterized by debilitating highs and lows and outbursts of violence. Suddenly, Olivia accuses her 11-year-old sister, Audrey, for taking her toys and her mother tells Audrey to go to her room.

Ms. D. STANAS: You know, what, Audrey.

Ms. O. STANAS: You send her up.

Ms. D. STANAS: You really (unintelligible) to do that. And you need to talk to (unintelligible).

Ms. O. STANAS: We are.

Ms. D. STANAS: Olivia sets the tone in the house when she’s having a bad day. We’re all having bad days. It’s next to impossible not to feed off that irritability that inside that anger.

BROWN: Deb says it’s been torture for Audrey. Hi, Audrey.

Ms. AUDREY STANAS (11-year-old Daughter): Hi.

BROWN: Come on in.

BROWN: High school?

On this afternoon, Audrey has just gotten off the school bus. She makes herself ramen noodles and relishes having her mother all to herself. It’s a half hour before Olivia gets home. As Audrey eats, she recalls the time Olivia’s outburst sent her to the emergency room.

Ms. A. STANAS: She started calling me a name, and then, the next thing I know she’s saying, I’m going to throw this book at you. And I turned around, right when she was throwing it, so it hit my face and I was bleeding and I remember screaming down the hall and watching the blood drip from my face. I don’t believe she ever got grounded for that.

BROWN: Deb Stanas is well aware of the resentment Audrey feels, that her childhood is in many ways at the mercy of Olivia’s volatility. For a short time, they took Audrey to a counselor, but it didn’t seem to help.

Ms. D. STANAS: She was just so angry. She was threatening suicide, I’m going to run away, I hate this family, I can’t live here. And to be quite honest what she went through, part that I can’t blame her. She really got abused by distraught and I couldn’t separate them. I felt so helpless I couldn’t protect her.

BROWN: Deb says she does try to keep Audrey safe from Olivia. She puts them on opposite ends of the house, but as soon as she turns her back, Olivia runs to find her sister. Deb installed a lock on the door, but Olivia found the key.

Ms. A. STANAS: I should have her locked in the laundry room again. That worked.

BROWN: Her mother is actually relieved that Audrey can be so blunt like a typical child because she worries Audrey’s growing up too fast. That’s why she and her husband’s tried to give Audrey days when she’s the center of attention, like this cheerleading tournament.

Audrey and a friend were selected to sing the national anthem and the whole family watched, even Olivia, in the packed auditorium.

(Soundbite of U.S. National Anthem)

Ms. A. STANAS and Unidentified Woman: (Singing) Oh say can you see by the dawn’s early light…

BROWN: Deb worries that special occasions like this are not enough to insulate Audrey from the stress of their household. And to hear Audrey tell it, that’s a valid fear.

Ms. A. STANAS: When Olivia is being a jerk and doing weird things like – and then, I’ll be downstairs asking for a question on my homework, and they’ll say Audrey, go away now, and won’t give me anything until they’re done with her, which takes them until like midnight to calm her down.

BROWN: And Deb knows this isn’t healthy for Audrey.

Ms. D. STANAS: But it would be so intense with Olivia. By the time I finally got her to bed, and Audrey would say please, mommy just come with me, come lay down with me, and by then my whole body was just, I can’t have anybody touch me. I just need to be quiet, without any noise. And so there were days were I’d say I can’t, Audrey. I just can’t go and come in there. I just have to go in my own bed and be alone. It breaks my heart that I even said that to her because she deserves so much more, you know.

BROWN: Psychologists like Diane Marsh of the University of Pittsburgh said the Stanas family is not unusual.

Prof. DIANE MARSH (Psychologist, University of Pittsburgh): As hard as parents may try – and they do – to meet the needs of their well siblings, time and energy are simply finite. And so siblings often feel like the forgotten family members. Everybody else’s problems are more important than theirs.

BROWN: Marsh conducted one of the first studies of well siblings of the mentally ill and wrote about it in her book, “Troubled Journey.” Her co-author, Rex Dickens, himself a brother of three mentally ill siblings, says that over time, sisters and brothers of the mentally ill become frozen souls.

Mr. REX DICKENS (Co-Author, “Troubled Journey”): You can’t shut down emotionally and part of your life, and in that kind of carries over into, you know, other areas. You can’t trust, you can’t feel, or you can’t talk. So there’s a little core there that’s frozen in time, and maybe to be dealt with later, but kind of never does get dealt with.

BROWN: Marsh and Dickens have found that well siblings have higher rates of depression than the general public. Other siblings worry they might catch what their brother or sister has.

Clea Simon is a Boston journalist, who wrote the memoir “Mad House: Growing Up in the Shadow of Mentally Ill Siblings.” Both her older sister and brother were struck with schizophrenia when she was only six.

Ms. CLEA SIMON (Author, “Mad House: Growing Up in the Shadow of Mentally Ill Siblings”): When you see your brother and your sister grow up and change from your brother and your sister into something scary and weird and alien, you just think that’s what happens. You think that when you hit 16 you’re allowed to date and to drive. And then you’re hospitalized.

BROWN: Simon often witnessed or became the target of her siblings’ violent outburst, which is why she and many other well siblings believe they may now suffer from post-traumatic stress disorder – a collection of debilitating symptoms from flashbacks to nightmares.

And while all families are different, most siblings seemed to be affected, at least, by survivor’s guilt: why was my sister or brother afflicted? Why not me? Psychologist Dianne Marsh.

Prof. MARSH: And as they mature, and they go on to careers and relationships and families, over and over again, we heard that it is with a sense of loss for their sibling who may not be able to move on.

BROWN: As siblings aged, there are practical concerns beyond the existential ones. In one clinical survey, 94 percent of well siblings reported a pervasive worry that they will have to care for a mentally ill brother or sister when their parents no longer can. And that worry is not an idle one.

Pamela Spiro Wagner and Carolyn Spiro are twin sisters, identical twins they believed. Relaxing in Pam’s high-rise apartment near Hartford, Connecticut.

Ms. PAMELA SPIRO WAGNER (Diagnosed with Schizophrenia): (Unintelligible). Pins and needles.

Dr. CAROLYN SPIRO (Psychiatrist, Harvard): Or do you want slippers?

Ms. WAGNER: No, no, no. It’s fine. I’m just trying to sort of shake it into life.

BROWN: At 52, both are blonde and petite with long, narrow faces. But one of them looks more weathered, less groomed. You might still not know who’s diagnosed with schizophrenia until Pam starts to talk about her breakfast conversation.

Ms. WAGNER: The cup, the teacup was saying to me, there’s a chip in me, and it really hurts when you drink tea out of me on that side.

Dr. WAGNER: This (unintelligible).

Ms. WAGNER: Well, there’s a tea hanging…

Dr. SPIRO: Maybe the tea had an opinion too.

Ms. WAGNER: Well it might have but…

BROWN: When Pam and Carolyn were children, they both seemed fine. Like many twins, they were best friends and bitter rivals. But no one in the family, not their two other siblings – nor their parents – noticed when Pam first began to hear voices. It was November 22, 1963.

(Soundbite of archived news)

Mr. WALTER CRONKITE (Broadcast Journalist): From Dallas, Texas, the Flash, apparently official, President Kennedy died at 1 p.m. Central Standard Time.

BROWN: While sitting in a grade school classroom, while everyone else was riveted by the news of John F. Kennedy’s assassination, Pam says she began to hear murmuring in her head.

Ms. WAGNER: Well, at first, they weren’t saying anything. Then they were just saying my name, and they were mangling at, you know, saying Pam Spam, Pam pyro Spiro. And then they started saying kill you, kill it, kill (unintelligible), kill you, kill you, will you kill him, will you kill you. The message was more realization that I’d killed Kennedy.

BROWN: Pam told no one of the menacing voices now filling her head, but well siblings are often the first ones to noticed that something is going wrong, and Carolyn is no exception.

Dr. WAGNER: She was going to school with greasy hair, greasy face and looking disheveled, and embarrassing me.

BROWN: Pam and Carolyn both went to Brown University where Carolyn thrived. Caroline didn’t know it, but Pam was falling deeper into paranoia and hallucinations.

Ms. WAGNER: I would just say things like I feel numb. I feel like moon rock, but what I wouldn’t say is that there were also voices saying, you’ll feel better if you burn yourself.

BROWN: And then, Pam tried to kill herself with an overdose of sleeping pills. She left college and moved back home. Carolyn finished at Brown and went to medical school.

Looking back, she sees she made choices very much connected to Pam’s fate. She became a psychiatrist and she married young, something she now thinks was her way of proving she was normal.

During these years, Pam had lucid stretches where she honed her writing skills and won awards for poetry. But the voices always came back, and Carolyn got frequent calls from emergency rooms where Pam ended up.

Dr. WAGNER: At that point, I was at my wit’s end. She was becoming desperately suicidal. They were treating like she had a terminal illness, you know, you might want to consider saying goodbye.

BROWN: Pam did survive, and recently she found a medication that has kept the voices at bay. Pam and Carolyn have now told their story in a new memoir called “Divided Minds: Twin Sisters and their Journey Through Schizophrenia.” They went on a book tour, trading off reading passages at colleges and bookstores.

Ms. WAGNER: Would you mind turning off the radio? I asked the taxi driver. It’s hurting my ears. Head turned toward me, then, lady, you must be hearing things where’s the radio being on.

BROWN: The book wasn’t easy to pull off as Pam was hospitalized several times during the writing process. Even during the tour, Pam’s paranoia is never entirely gone. She’s still worried about something she calls the Hazmat Man. That’s a figure Pam sees when she looks at the hazardous material symbol on her plastic medical baggies. Carolyn tries to emphathize.

Dr. WAGNER: Is it a threatening man or is it just…

Ms. WAGNER: Oh, he’s not threatening now because I know where the real Hazmat Man. He’s locked up in an Altoid box, double duct-taped.

BROWN: This is where Carolyn’s face goes from bemused to exasperated.

Dr. SPIRO: You don’t really believe that, do you?

Ms. WAGNER: I mean, I had the box and it’s still taped up.

Dr. SPIRO: Keep it taped up.

Ms. WAGNER: I do, but you don’t really believe this, do you? I mean, in all honesty?

Dr. SPIRO: There are times that it feels like a lot when I’m getting behind in my own bells, when she’s getting sick, when she’s deciding on her own not to take medication, which she’s not doing at the moment. But – then I feel it, oh yeah. That is an imposition. Then I hate it. Yeah, you’ve got the freedom to not take medication because you’re independent. You get to do what you want when you want to do it, and the hell with whatever I want. And guess whose freedom you get to take away? Mine.

BROWN: And yet Carolyn says she can’t imagine a world without the twin sister she loves, a sister who’s sensitive and smart but who clearly drew the short straw.

Dr. SPIRO: I’m so lucky. None of us deserves anything, really. We just get it by grace of whatever. I guess, I’d think I could just as well have been the one who got schizophrenia.

BROWN: And she could have. Schizophrenia does have a genetic component. If one identical twin has the disease, the other has about a 50 percent chance of getting it, even if they’ve been raised separately. The rate is closer to 60 percent for bipolar disorder. But environment is also likely to be a factor. Schizophrenia might be triggered by something as simple as a virus in people predisposed to the disease.

Regardless of the causes, one in a hundred people suffers from schizophrenia, which means that several times that number of siblings suffer along with them. To say those are the well ones is, of course, a matter of semantics because when a family copes with mental illness, no one gets out unscathed.

For NPR News and American Radio Works, I’m Karen Brown.

(Soundbite of music)

YDSTIE: You’re listening to WEEKEND EDITION from NPR News.

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• Hot Stuff to Help Kids Chill Out: The Anger Management Book, by Jerry Wilde
  Speaks directly to children and teens in a language they can easily understand to help them manage their anger rather than be controlled by it. Try reading and discussing it with your children.

References

Written and compiled by Kyla Boyse, R.N.  Reviewed by Brenda Volling, Ph.D.
Updated February 2010

U-M Health System Related Sites:
U-M C.S. Mott Children’s Hospital
Department of Psychiatry
U-M Pediatrics

By Richard E. Meyer

9/1/2010

 

 

Photograph by Dustin Snipes

When he’s sad, he hangs his head and says, “Awww.” When happy, he smiles and says, “Um-hmmm.” Wanting attention, he gestures with his arms. Bandit is a humanoid robot used in experiments with children who have autism, many of whom engage more easily with robots than with people—perhaps because robots are less complex. “Let’s say I’m a child with autism,” says Maja Mataric, a professor of computer science, neuroscience, and pediatrics at USC, who is leading the project. “I might not make eye contact with people. But I’ll interact with the robot, and then I’ll look at my mother and point to the robot. We want to elicit this social behavior, then substitute the familiar person with a less familiar one—going from parent to sibling to peer.” Although the project’s six robots are only for the lab, Mataric hopes their successors will eventually be able to aid caregivers in the classroom.

9/1/2010

Illustration by Garcia Lam

 

Move Forward Quickly
With a diagnosis comes denial, anger, even despair. But you are wasting time if you don’t move swiftly through the grieving stages toward acceptance. The earlier the therapeutic intervention—before your child’s brain circuitry becomes more resistant to rewiring—the better. Find a parents’ group and gather names of therapists. Talk About Curing Autism is a good place to start.

Go Beyond the Initial Diagnosis
A psychiatrist might have correctly identified your child as autistic, but for a fuller picture, invest in a comprehensive test (it’s costly) administered by a neuropsychologist or a hospital-run assessment clinic. UCLA’s Autism Evaluation Clinic (310-794-4008) has a long track record, while the Boone Fetter Clinic at Childrens Hospital (323-361-6102) arranges preapproval with insurance companies and accepts Medi-Cal.

You Have Rights. Know Them
Under California law, state-contracted regional centers (dds.ca.gov) must offer behavioral therapies, social skills classes, and other services to children with autism. Make an appointment. Your school district similarly must outline an individualized education program, or IEP, for your child. If the district determines that it cannot provide an adequate education, it must pay for a nonpublic school that can.

Don’t Take No for an Answer
With all the city and state budget cuts, many parents report being turned down for vital services. That means you may have to make things unpleasant for your school or regional center bureaucracy to get what your child is entitled to. If you can’t afford a lawyer—you’ll probably need one—contact an agency such as the Legal Aid Foundation of Los Angeles, which represents qualified families free of charge.

Remember to Have Some Fun
Your expectations may have changed, but don’t let that hold you back from enjoying time with your kid. Two exceptional places that cater to children with autism are Danny’s Farm in Altadena (626-797-FARM), whose after-school program includes playtime with animals, and Leaps n Boundz in West L.A. (310-821-0963), which offers gymnastics, swimming lessons, cooking classes, and family camping trips.

By Wendy Witherspoon

9/1/2010

Finding the right school for your child is all about the fit. The same special-education program that works well for a student with moderate autism may be off the mark for another child on the high-functioning end of the spectrum. A charter school hoping to mainstream your child won’t be the best solution for a student who shuts down in a room with more than four people. A district will sometimes pay to enroll a child at a contracted nonpublic school (NPS) if its own programs fall short. There are also private institutions that only accept tuition out of pocket. Some of these schools specialize in Asperger’s syndrome or severe autism. Larger enterprises, like the Help Group, run several schools on a single campus, each oriented to a different point on the spectrum. Open the facing page for an expansive, but by no means exhaustive, list of such schools in L.A. Always request a class visit to make sure the program can deliver the education and support it promises.

Private & Nonpublic
Academy for the Advancement of Children with Autism
 (Private & NPS) Grades: K-12 Enrollment: 15Tuition: $30,000 Student-teacher ratio: 1:1Students with ASD: 100% The approach: The academy includes a K-2 program that integrates instruction, speech and language therapy, and behavior modification. Additional services range from parent training to life skills education. AACA shares its location with James Jordan Middle School, a mainstream charter, so its students can engage with neurotypical peers. » 20040 Parthenia St., Northridge, 818-882-0200.

Almansor Center Autism Spectrum Disorders Program
 (NPS) Grades: K-12 Enrollment: 155 Student-teacher ratio: 12:1 Students with ASD: 26% The approach: The Almansor Center at the Redesign of Learning has served special-needs students since 1974, when it opened in Alhambra. Now based in South Pasadena, the school launched a specialized autism program a couple of years ago that prides itself on flexibility with students. It has grown to fill four classrooms and may expand further. » 1955 Fremont Ave., South Pasadena, 323-257-3006.

Baron School for Exceptional Children
 (Private & NPS) Grades: Ages 3 to 22 Enrollment: 85 Tuition: $24,000 Student-teacher ratio:3:1 Students with ASD: 70% The approach: Founded in 1908 as the Jewish Orphan’s Home of Southern California and located on the 18-acre, parklike campus of the Vista Del Mar education and social services center, Baron offers an intervention program and classes for children with moderate-to-severe autism and access to a therapy pool and athletic fields. » 3200 Motor Ave., West L.A., 310-836-1223, ext. 571

Brill School of Autism at Tobinworld
 (NPS) Grades: K-12 Enrollment: 100 (300 at Tobinworld) Student-teacher ratio: 4:1 Students with ASD: 100% The approach: In 1977, Judy Weber founded this center for education, behavior modification, and work skills training (an on-site Baskin-Robbins provides a vocational backdrop) in response to the needs of her severely autistic son, Tobin. The Brill School expands students’ capabilities through individual instruction and group reinforcement. » 920 E. Broadway St., Glendale, 818-247-7474.

Carousel School
 (NPS) Grades: Preschool-12 Enrollment: 88 Student-teacher ratio: 6:1 Students with ASD: 75%The approach: Carousel recently remodeled and expanded its LAX-area facilities, which serve individuals with autism and other special needs from preschool to age 65. Students ages 3 to 22 can participate in an annual winter performance (last year’s had a 1970s theme) as well as a prom night at a nearby auditorium. »7899 La Tijera Blvd., L.A., 310-645-9222.

Center for Learning Unlimited
 (Private & NPS) Grades: 3-12 Enrollment: 24 Tuition: $35,000 Student-teacher ratio: 10:1Students with ASD: 25% The approach: Community involvement is one highlight of this school, located in the Torrance Towne Center. Students participate in recycling and local Adopt-a-Family holiday programs as well as collect donations for UNICEF at Halloween. » 2785 Pacific Coast Hwy., Torrance, 310-997-1900.

Cheerful Helpers Child and Family Study Center
 (Private & NPS) Grades: Preschool-K Enrollment: 16 Tuition: $28,000 Student-teacher ratio:2:1 Students with ASD: 75% The approach: Moms and dads are hands-on in this relationship-based program. All parents participate in family therapy as well as a weekly parents’ group that addresses the shared struggle of raising a child with autism. » 3300 Wilshire Blvd., Koreatown, 213-387-7252.

Dubnoff Center for Child Development
 (NPS) Grades: K-12 Enrollment: 95 Student-teacher ratio: 6:1 Students with ASD: 10% The approach: In 1948, Belle Dubnoff started teaching three “unteachable” kids in her living room, and in 1977, the center opened a residential group home for boys. Today the school features colorful murals on its walls and offers field trips, community walks, and dances. » 10526 Dubnoff Way, North Hollywood, 818-755-4950.

ECF Kayne Eras Center
 (Private & NPS)  Grades: K-12 Enrollment: 210 Tuition: $25,000 Student-teacher ratio: 5:1Students with ASD: 10% The approach: In the 1970s, Barbara Cull became frustrated by the inability of the public school system to educate her special-needs child, so she launched an alternative. Since then her therapeutic school has merged with the Exceptional Children’s Foundation, which provides developmental disability support from early intervention to postgraduation jobs training. » 5350 Machado Rd., Culver City, 310-737-9393.

Elliott Institute
 (NPS) Grades: K-12 Enrollment: 20 Student-teacher ratio: 2:1 Students with ASD: 100% The approach: Headed by Dr. Alicia Elliott, a veteran speech and language pathologist and autism expert, the institute encompasses a speech clinic and a program to help high-functioning ASD kids better process information. » 2506 Foothill Blvd., La Crescenta, 818-236-3603.

Five Acres School
 (Private & NPS) Grades: K-10 Enrollment: 70 Tuition: $25,500 Student-teacher ratio: 4:1Students with ASD: 20% The approach: Founded as the Boys & Girls Aid Society in 1888, Five Acres runs a residential treatment center and a therapeutic school on a campus designed by Pasadena architect Myron Hunt, with a playground, basketball courts, a swimming pool, and a 6,000-volume library. » 760 W. Mountain View St., Altadena, 626-798-6793, ext. 2315.

Frostig Center
 (Private & NPS) Grades: 1-12 Enrollment: 87 ?Tuition: $26,000 Student-teacher ratio: 6:1Students with ASD: 20% The approach: This center for students with language processing difficulties has a vibrant arts program. Last year the drama department staged Willy Wonka and the Chocolate Factory and Clue at the Sierra Madre Playhouse, and the film class wrote and produced a Twilight Zoneepisode. » 971 N. Altadena Dr., Pasadena, 626-791-1255.

The Help Group/Bridgeport School
 (Private & NPS) Grades: K-12 Enrollment: 255 Tuition: $27,200 Student-teacher ratio: 6:1Students with ASD: 70% The approach: While the Help Group also serves children with a variety of special needs, it is currently the largest nonpublic provider of autism education in the country, with campuses in Sherman Oaks and Culver City (see below). Bridgeport School serves children with mild cognitive delays and social communication and/or language deficits. The Bridgeport Transition Program prepares students ages 18 to 22 for young adulthood by fostering vocational and independent-living skills. » 13130 Burbank Blvd., Sherman Oaks, 877-943-5747.

The Help Group/Sunrise School for Autism and Developmental Disabilities
 (Private & NPS) Grades: K-12 Enrollment: 135 Tuition: $27,200 Student-teacher ratio: 10:1Students with ASD: 80% The approach: Sunrise School stresses communication and motor skills, behavior modification, and preparation for adaptive and independent living. » 13130 Burbank Blvd., Sherman Oaks, 877- 943-5747.

The Help Group/Village Glen School
  (Private & NPS) Grades: K-12 Enrollment: 536 Tuition: $27,200 Student-teacher ratio: 6:1Students with ASD: 80% The approach: Village Glen School educates students with Asperger’s, high-functioning autism, and nonverbal learning disabilities. Village Glen High offers a college preparatory curriculum, with more than 90 percent of students going on to the next level of education. » 13130 Burbank Blvd., Sherman Oaks; 4160 Grand View Blvd., Culver City; 877-943-5747.

The Help Group/Young Learners Preschool for Autism
   (Private & NPS) Grades: Preschool Enrollment: 40 Tuition: $32,200 Student-teacher ratio:3:1 Students with ASD: 90% The approach: Young Learners focuses on early intervention. » 13130 Burbank Blvd., Sherman Oaks; 4160 Grand View Blvd., Culver City; 877- 943-5747.

LeRoy Haynes Center’s School for Autism
 (NPS) Grades: K-12 Enrollment: 33 Student-teacher ratio: 4:1 Students with ASD: 95% The approach: Four years ago the residential LeRoy Haynes Center converted a Spanish-style home on its campus into a school for autism. Students enjoy a vocational cooking class, tend an herb garden, and ride horses nearby. » 233 W. Baseline Rd., La Verne, 909-593-2581, ext. 277.

SmartStart Developmental Learning Center
 (Private & NPS)  Grades: Preschool-K Enrollment: 68 Tuition: $33,600 Student-teacher ratio:4:1 (preschool); 5:1 (kindergarten) Students with ASD: 25% The approach: SmartStart is also a certified DIR/floortime program, which emphasizes development through relationship building and shared interests as opposed to behavior modification through the granting and withholding of rewards. Floortime is also central to SmartStart’s early intervention program. » 2505 Lincoln Blvd., Santa Monica, 310-452-5437.

Spectrum Program at New Roads School
 (Private)  Grades: 6-12 Enrollment: 20 (640 at New Roads) Tuition: $28,050 Student-teacher ratio: 4:1 Students with ASD: 3% The approach: Unlike many progressive private schools, New Roads School’s commitment to diversity extends to kids with an ASD. Spectrum students attend New Roads classes but also pursue a daily social skills curriculum that encourages self-expression through drama, film, and radio. » 3131 Olympic Blvd., Santa Monica, 310-828-5582.

Speech and Language Development Center
 (NPS) Grades: Preschool-12 Enrollment: 325 Student-teacher ratio: 4:1 Students with ASD:75% The approach: Serving Orange, L.A., Riverside, and San Bernardino counties, the 15-acre facility has three playgrounds and a separate outdoor courtyard for the upper classes. Students participate in lively assemblies: When X Games Women’s Moto-X gold medalist Ashley Fiolek, who is deaf, visited the SLDC campus last spring, students greeted her with posters. » 8699 Holder St., Buena Park, 714-821-3620.

Switzer Learning Center
 (NPS)  Grades: 3-12 Enrollment: 88 Student-teacher ratio: 9:1 Students with ASD: 20% The approach: Switzer applies a relationship-based model it calls “REAL” (Relational, Emotional, and Affectional Learning), in which students move toward greater social integration with guidance from parents and other trusted adults. Some parents participate in a ten-month training program. After school, Switzer offers a “FunZone” therapeutic social skills program that includes art, music, dance, sports, computers, and cooking. » 2201 Amapola Ct., Torrance, 310-328-3611 or

Westview School
 (Private & NPS) Grades: 6-12 Enrollment: 135 Tuition: $32,500 Student-teacher ratio: 8:1Students with ASD: 27% The approach: Westview caters to academically capable students who have deficits in social skills. Most with an ASD here have Asperger’s syndrome. » 11801 Mis-sissippi Ave., West L.A., 310-478-5544.

 

Chime Charter
CHIME Charter School

  Grades: K-8 Enrollment: 650 Student-teacher ratio: 15:1 (K-3); 18:1 (4-8) Students with ASD:5% The approach: In 1987, a group of professors at Cal State Northridge began developing a school model that would build special education into its foundation while still primarily educating neurotypical kids. The CHIME Charter School, opened in 2003, was the first to follow this inclusive blueprint, with an enrollment of at least 20% special-needs students supported by therapies and by schoolmates who gain a keener understanding of the challenges involved than at a typical elementary or middle school. CHIME’s philosophy is to embed therapeutic services for students with an ASD (such as occupational and speech therapy) in general education classes. Applications are available in January for the school’s spring lottery. »19722 Collier St., Woodland Hills, 818-346-5100.

CHIME Preschool and Kindergarten Inclusion Program at the Child and Family Studies Center, Cal State Northridge
 Grades: Preschool-K Enrollment: 12 Student-teacher ratio: 4:1 Students with ASD: 50% The approach: This lab school on the Northridge campus offers early education and therapy as well as instructional and research opportunities for CSUN students and faculty. » 18330 Halsted St., Northridge,

LAUSD

PROGRAM FOR STUDENTS WITH ASPERGER’S SYNDROME
The Los Angeles Unified School District serves more than 9,400 students with an autism spectrum disorder through approaches that vary from inclusion to special day classes. The district’s Asperger’s program aims to integrate 10 to 12 students with an ASD into general education classrooms. Special-education teachers with experience in Asperger’s syndrome (and two to three aides) collaborate with the main teachers to provide social and language support. The following LAUSD campuses offer the program. 818-677-2922.

El Oro Elementary
 » 12230 El Oro Way, Granada Hills, 818-360-2288

Encino Elementary
 » 16941 Addison St., Encino, 818- 784-1762

Fleming Middle School
 » 25425 Walnut St., Lomita, 310-257-4500

Gardena High School
 » 1301 W. 182nd St., Gardena, 310-354-5000

Harding Elementary
 » 13060 Harding St., Sylmar, 818-365-9237

Helen Bernstein High School
 » 1309 N. Wilton Pl., Hollywood, 323-817-6400

John F. Kennedy High School
 » 11254 Gothic Ave., Granada Hills, 818- 271-2900

Kester Elementary
 » 5353 Kester Ave., Van Nuys, 818-787-6751

Lanai Road Elementary
 » 4241 Lanai Rd., Encino, 818-788-1590

Le Conte Middle School
 » 1316 N. Bronson Ave., Hollywood, 323-308-1700

Millikan Middle School
 » 5041 Sunnyslope Ave., Sherman Oaks, 818-528-1600

Mulholland Middle School
 » 17120 Vanowen St., Lake Balboa, 818-609-2500

Newcastle Elementary
 » 6520 Newcastle Ave., Reseda, 818-343-8795

Reseda High School
 » 18230 Kittridge St., Reseda, 818-758-3600

Robert E. Peary Middle School
 » 1415 W. Gardena Blvd., Gardena, 310-225-4200

South Gate High School
 » 3351 Firestone Blvd., South Gate, 323-568-5600

Stephen M. White Middle School
 » 22102 S. Figueroa St., Carson, 310-783-4900

Ulysses S. Grant High School
 » 13000 Oxnard St., Van Nuys, 818-756-2700

Walter Reed Middle School
 » 4525 Irvine Ave., North Hollywood, 818-487-7600

 

INTENSIVE COMPREHENSIVE AUTISM PROGRAMS (ICAP)
Designed for early intervention, the LAUSD’S ICAP classes integrate occupational and speech therapy with TeachTown, a computer program that supports the applied behavior analysis approach to helping students with autism develop social, language, and motor skills. Teachers are hand selected based on their expertise, says LAUSD autism specialist Debbie Moss. Classes are limited to eight students, with a 2:1 student-teacher ratio. Each of the following campuses hosts a preschool class and a kindergarten/first-grade class.

Ambler Elementary
 » 319 E. Sherman Dr., Carson, 310-532-4090

Lockwood Elementary
 » 4345 Lockwood Ave., L.A., 323-662-2101

Melvin Avenue Elementary
 » 7700 Melvin Ave., Reseda, 818-886-7171

Parthenia Street Elementary
 » 16825 Napa St., North Hills, 818-891-6955

Rio Vista Elementary
 » 4243 Satsuma Ave., North Hollywood, 818-761-6147

Utah Street School
 » 255 Gabriel Garcia Marquez St., L.A., 323-261-1171

9/1/2010

DON’T SAY:

“My kid has tantrums like that.”

Your intent to reassure is admirable, but it ends up coming off like “autism is no big deal.

“She’s autistic? She looks normal.”

So all those doctors and psychiatrists got the diagnosis wrong? Doubtful. And the preferred term is “neurotypical,” not “normal.” Put a lid on it.

“Maybe he needs a time-out.”

The straightforward approach may work with a neurotypical child but probably won’t be effective for parents dealing with the nuances of the disorder.

DO SAY:

“I’m bringing over takeout and a bottle of wine.”

Smile through the meltdowns, pretend you’re as interested in fans and wheels as their son or daughter is, and remember that autism is not the only thing that defines their child—or them.

9/1/2010

What is autism?
It’s a pervasive developmental neurological disorder—not a disease—that impairs communication skills, learning abilities, and social interaction.

What are the early signs?
Traits typically show up when children are around three and include obsessive behaviors, lack of eye contact, and delayed speech.

Aren’t a lot of autistic people geniuses?
Some are geniuses, or savants, but that is not the norm. For the full range of autism spectrum disorders, as they’re called, click here.

How prevalent is it in L.A.?
In a state that has one of the highest diagnostic rates of autism in the country, L.A. still stands out. Earlier this year statistics generated by UC Davis’s MIND Institute showed an average of 40 diagnoses for every 10,000 California children born between 1996 and 2000; in large areas of L.A. County (see above), the rate was more than twice that.

What causes autism?
This is hotly debated, and experts still can’t say for certain. Much of the current research is based on genetics, environmental toxins, and the more advanced age at which parents are having children.

What about vaccines?
A British researcher’s 1998 study suggested a connection between MMR vaccines and autism. The study was widely debunked and has since been retracted by the scientific journal that published it.

Does the state provide any help to families?
It does, but not as much as it used to. Services at publicly funded regional centers (which offer evaluations, therapies, and summer camp) have been reduced or eliminated as the governor and the legislature have slashed their budgets.

Is there a cure?
No. Some parents turn to chelation therapy (hoping to eliminate heavy metals they suspect are linked to autism) or to a diet free of wheat and dairy (to lessen symptoms they believe are triggered by a “leaky gut”), but there is no scientific evidence to support such treatments. What isn’t disputed is the efficacy of early intervention strategies, such as speech and occupational therapy, for many with the disorder.

9/1/2010

Increase in people with autism served by regional centers between 1987 (2,701) and 2007 (34,656). 

Average age at which autism is diagnosed. The earliest symptoms aren’t detected for 6 to 12 months.

Ratio of males to females with autism who are in California’s department of developmental services system.

People in California with an autism spectrum disorder who lived in the home of a parent in 2007.