With more than 400 kinds of treatment available for autism, ranging from traditional behavioral therapy to restrictive diets to extreme options like chelation and hyperbaric oxygen, parents often find it hard to know what choices to make for a child on the spectrum. And even after a family commits to an intervention and sees progress, sometimes that progress stalls and it seems that another approach is called for.
Here are some guidelines on choosing a path from Claire LaZebnik, co-author with with Dr. Lynn Kern Koegel, of Overcoming Autism: Finding the Answers, Strategies and Hope That Can Transform a Child’s Life, and Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger’s.
To those parents who are just starting out, here’s my advice.
–Seek out the most reputable and researched behavioral interventions available in your area.
– Find therapists who have clear goals and who trained at a real clinic or university and whose manner of interacting with your child feels right to you.
– Work closely with your school and, if possible, mainstream your child with an aide.
– Look for slow and steady progress and give up on the idea of miracle cures–they’re not out there.
– Love your child for who he or she is and stop thinking there’s a different, better kid “trapped inside.”
–Hope for the best, survive the worst, find humor wherever you can.
Temple Grandin is America’s best-known autistic person, and she’s about to become much more famous. On February 6, HBO debuts a feature film that stars Claire Danes as the gawky, socially impaired but brilliant animal scientist who, despite her disability—or actually because of it—has achieved enormous success in two arenas: as designer of humane cattle-handling facilities and an author and outspoken voice on autism. The force behind telling this story was executive producer Emily Gerson Saines, who is herself the mother of a child with autism.
Photo by Van Redin/HBO
Temple Grandin, tracks Grandin’s early years as a child who had no speech and very little connection to the world at age four, through her painful humiliations in school, to her ultimate triumph in cowboy country. Grandin says that two people were key to her success: her indominatable mother who simply refused accept the psychiatric view that her daughter would never speak and should be institutionalized, and her high school science teacher, who figured out how to ignite Temple’s curiosity and ambition. This interview with Grandin, now 62 and a longtime professor of animal science at Colorado State University, was conducted for TIME magazine’s website.
How close did Claire Danes come to matching your own memories of your early life?
It was like going into a strange time machine. She became me back in the ‘60s and 70’s.
Including that odd, rapid way of talking? You don’t quite sound like that now.
That’s the way I used to be. The thing about being autistic is that you gradually get better. You get less and less autistic-like, if you keep doing things and getting exposed to things that help you develop.
You have a photographic memory. So were you bothered by differences between real events and places and the way they were portrayed in the film?
They had an uncanny resemblance. Like my aunt’s ranch. They picked a house out in Texas that looks kind of like my aunt’s ranch in Arizona.
What kind of input did you have?
I had a lot of input into the cattle stuff. I wanted to make sure that it was really, really accurate. I liked how they recreated my projects. They built the dip vat [a pesticide bath for delousing cattle] off my original drawings from the 1970s. It was a working dip vat! The geek side of me really liked that.
What about the famous “squeeze machine” you built as a teenager to calm yourself down with a mechanical hug?
It was built exactly off my drawings.
The filmmakers tried to capture the visual way you think by showing flashes of images, as if every thought you have is a picture. Is that really how it is?
That’s exactly how I think. It’s just like Google for pictures. Go ahead and give me a word and I’ll tell you how it comes into my mind. Don’t give me a common word like house or car.
Okay, how about cactus?
I see the fake cactus they had in the movie when I was on the set. Now I see some cactuses out in Arizona. I see the little cactus plant in my house when I was in Arizona. Now I’m seeing a big feedyard in Texas that’s called Cactus. Now you see how I’m getting off the subject.
I understand that you’ve had your brain scanned with an MRI and it has an unusual structure that reflects all this visual activity.
I have this great, big, huge Internet trunkline into the visual cortex that’s twice the size of the [normal] controls. But I want to emphasize that not everyone on the autism spectrum is a visual thinker. Some are mathematic-patterns kinds of thinkers. Some are word people. People on the spectrum tend to be specialist thinkers—good at one thing and bad at others.
It seems like sexism was almost as much of an obstacle to you as autism in your early life.
Exactly. When I started out there were no women working in the feed yards, only as secretaries in the offices. The scene where they put bull testicles on my car? That happened. The scene where they said the cowboys’ wives didn’t want me there? That happened too.
What do you hope people will get from this film?
I hope they’ll get that somebody who is severely autistic really can achieve. Another thing I hope they get is the importance of the mentor teacher. I’m seeing a lot of smart, geeky kids and there’s no Dr. Carlock [a high school science teacher played by David Strathairn] around to mentor them. Actually, my teacher was Mr. Carlock. I noticed they’d made that mistake in the script, but I decided he deserved an honorary doctorate so I didn’t change it. He was just so important to my success. Now a lot of the science teachers are gone, and they got rid of the auto-shop classes and the welding classes. Those hands-on classes can get a lot of these kids turned on. I’m seeing more and more of the kids with Asperger’s [a milder form of autism] getting held back. They are defining themselves as Asperger’s first. I define myself as being a scientist first.
Julia Ormond plays your very determined mother. Is your mother alive and has she seen the film?
My mother is 82 years old. She’s seen the movie. She liked it. She was a little worried about it. The movie presents me when I was at my most super-weird.
Do you still use the squeeze machine?
It broke two years ago, and I never got around to fixing it. I’m into hugging people now.
Ten years ago, autism was rarely detected before ages 3 or 4. Now, thanks to growing awareness and widespread screening at 18 and 24 months, more children with autism are being identified when they are toddlers. But for all the emphasis on early detection, very little research exists on how to intervene effectively for children so young. A report in the current issue of Pediatrics helps fill in the gap, providing the first randomized, controlled trial — the most rigorous kind of study — of a comprehensive autism treatment that appears to work well for children as young as 18 months.
While none of the children in the study were “cured” of autism, those receiving two years of intensive therapy achieved major leaps in IQ score, big improvements in their use of language and significant gains in their ability to handle the kinds of everyday tasks necessary for a child to function at school and at play.
All parents have hopes and dreams for their children. Parents of kids with serious disabilities are no different. But in their moments of wildest imagination, the parents of Vicki Martinez, Chase Ferguson and Travis Cardona could not have envisioned high school graduation — certainly not in the dark days when they first learned their children had autism.
But last month, in a spacious high school auditorium in the Bronx, New York, Vicki, Chase and Travis marched down the aisle to “Pomp and Circumstance,” resplendent in their caps and gowns, along with 15 classmates at P.S. 176X, a New York City public school with 560 students ranging in age from 3 to 21, all of whom have autism. Read the rest of my story for CNN.com and see the accompanying video or keep reading below.
“When I came here, I couldn’t talk. I talked gibberish,” the now-voluble Vicki recalls. “I didn’t do my class work; I’d go like this,” and she proceeds to flap her hands — a common symptom of autism known as stereotypy or, self-stimulation.
On graduation day, Vicki beamed from the high school stage as she collected three awards along with a special education diploma, and wowed the hundreds in the audience by singing “Besame Mucho” with the school’s Latin band.
P.S. 176X is the largest school for children with autism in New York City and very likely the largest in the country, if not the world. Because it is so big, explains principal Rima Ritholtz, it can offer an extraordinary range of services: chorus, band, arts, life skills and cooking classes, vocational training at school and in the community, as well as a wide range of academic programs aligned to the wide-ranging abilities and disabilities of the students.
The school operates within five school buildings: three elementary schools, a middle school and high school. P.S. 176X students have full-spectrum autism, not milder forms. About 10 percent of the students attend regular classes at those schools, with an aide to help them, but 90 percent are in special classes, with student-teacher ratios as small as 1-to-1 and as large as eight students with two aides and one teacher.
Nationally, there is much debate over how best to educate the nation’s rapidly growing and diverse population of youngsters with autism, the prevalence of which has increased tenfold over the past 25 years. The quality of services offered by public schools varies enormously from place to place. Some parents relocate to school districts that offer good autism services. Some persuade or even sue their district to pay for private school placement, which can cost $70,000 a year or more.
The right to seek private school placement for kids with disabilities was strengthened in June by a Supreme Court ruling in a closely watched case from Oregon. Under the federal Individuals with Disabilities Education Act, children with autism and other disabilities are guaranteed the right to a “a free appropriate public education” in the “least restrictive environment.”
“People have preconceived notions about public school; they think private is better,” says Ritholtz, who’s wrapping up her 12th year as principal of P.S. 176X and is, herself, the daughter of a special education principal. But Ritholtz would happily match her program with almost any of the high-priced private schools. “I say, let me see their chorus,” she jokes. While the school cannot necessarily serve children who have multiple handicaps in addition to autism, she allows, “We will walk a mile before we say we can’t accommodate a kid.”
The school offers a mix of educational approaches. Some classrooms follow a fairly strict applied behavioral analysis methodology, which tends to put a strong emphasis on one-on-one instruction, using rewards and punishments to spur learning and measuring incremental progress. Other classes use a variety of methods.
The school will weigh parental preferences along with what they feel will work best for the child. “Half the battle is winning the trust of the parents,” says Ritholtz. “We understand they are up against a very baffling disability.”
While the school does a lot of testing and evaluation, the staff never seems to lose sight of larger questions about the quality of life for its students. Says Ritholtz, “My father told me not everything that is important can be measured, and not everything you can measure is important.”
After watching her son Chase graduate, Teresa Ferguson ticked off the many things he learned at P.S. 176X. “They taught him so many things I never thought would be possible,” she says. “He learned how to make friends, joke, socialize. He learned how to sit still in the classroom. He learned how to read, write, sing, play a musical instrument, stand on a stage and say a speech. These are things I never knew would be possible when he was a toddler.”
Planning for graduation and the transition out of school begins when a student is 14, seven years before he or she must, by law, leave the public school system. Terri Giampapa, the transition coordinator and job developer, works closely with families to help them find job placements, adult day programs, sports and recreational activities that will suit the graduate. As part of that preparation, students visit work sites, spend time learning vocational skills and get used to being in larger groups. Some learn to travel and navigate public transportation.
Surprisingly, it can be harder to place the more capable graduates who seek job opportunities than those who are more severely disabled and directed to adult “day hab” programs. “Employment is extremely challenging,” says Giampapa, and it’s been made even harder by the recession. Only two of this year’s 18 graduates — Vicki and Chase — appear to be headed for work. They plan to go to “supported employment” situations, meaning that they will be closely trained and supervised.
Often such jobs are just 20 hours a week, so the school helps families plan ways to flesh out the week. For those who swim, there may be weekly visits to the YMCA or, in the case of one graduate, weekly appointments at a nail salon for a manicure and a dose of salon community. The goal is to construct a full and satisfying life, explains Rosemary Petrovich, a former assistant principal who still works at the school a few day a week: “Where are the places to go, people to see, things to do?”
The family of 176X graduate Travis Cardona couldn’t be more pleased with his post-graduation plans. Travis, who can read and write but doesn’t speak and relies on an electronic communicator, is headed for a day hab program called Quality Services for Autistic Citizens. “They had no space, and then they made space for him,” says Travis’ aunt and guardian, Ivette Ithier.
Ithier says she wept with joy watching her nephew graduate. “It was unbelievable. A big accomplishment.”
The idea seemed so reasonable: If anti-depressants are helpful to kids with obsessive compulsive disorder, they might be useful to children with autism who engage in such repetitive, compulsive behaviors as rocking, hand-flapping, headbanging, emitting repetitive sounds and other “stereotypy.” Too bad it doesn’t work. At least not with the drug Cylexa (citalopram), a selective serotonin reuptake inhibitor (same category as Prozac) that has been widely prescribed for people with ASD.
A study of 149 children ages 4 to 17, published in the current Archives of General Psychiatry, found that Cylexa was no better than placebo, which, incidentally, had a 30% success rate. (It’s easy to forget how powerful the placebo effect truly is. )
Lead author Bryan King, M.D., chief of child and adolescent psychiatry at Seattle Children’s Hospital told a WebMD reporter that he was surprised by the finding: “We were fully expecting to demonstrate the value of this drug.”
Here’s a link to the WebMD story on the subject.
If you could spot the incipient signs of autism in infants as young as 8 months, could you intervene and nip autism in the bud? Within the research community, there’s growing support for this view. The idea is based on two notions: First, the younger the child, the more plastic the brain, and second, a baby who is directed through intervention to interact with the social environment will have a more typical course of development.
“The environment in the early years has an active role in shaping the brain,” says Geraldine Dawson, a leading autism researcher and the chief scientific officer of the advocacy group Autism Speaks. “What we see in autism may be partly the result of not engaging with the social environment. So if you engage the baby through an intervention, you might prevent or at least reduce the development of autism symptoms.”
Thus, the child who is not taking part in the typical parent-child dance — exchanging smiles and glances, pointing at something of interest, seeking attention — is missing out on a lot of learning and failing to lay the foundations for more complex social behavior. Rather than become experts on social cues, as most humans are wired to do, observes Ami Klin of the Yale Child Study Center, these children tend to focus on the physical world — the opening and closing of doors and the properties of inanimate objects.
Several studies from across the country are looking at how to draw at-risk infants into the social world so that they will develop more normally. One National Institutes of Health–funded study, at the University of Washington, begins intervention for at-risk babies at 8 months, says Dawson, who adds, “What we are doing is teaching the parents how to structure interactions to promote eye contact and babbling.” Parents learn, for example, to engage their babies in settings where there are few distractions so that facial expressions and language are more salient. They also learn strategies to calm infants who tend to become agitated and stressed by social activity. The intervention is playful in spirit, says Dawson, adding, “Parents get very confident and are able to learn this quickly.” The hope, she says, is that for some significant portion of children at risk, “we can begin before the full autism syndrome is present and prevent it from emerging.”
For my full story on this go to: Time.com
Apparently more than 400. According to a survey conducted last summer by psychologist Raymond Romanczyk (pictured) and his graduate students at the Institute for Child Development at Binghamton University, there were 414 different types of autism therapy described, promoted or cited on 16 major websites (including Autism Speaks, CDC, Wikipedia, Autism Society of America). By now, he said in a lively and provocative talk at today’s Mind & Body in Autism conference at Teachers’ College, Columbia, there are doubtless even more. To add to the confusion, the ones that come up most often in online searches tend to be those with the weakest research base: special diets, art therapy and the like. In an evaluation, Romanczyk’s team found that fewer than a quarter of these treatments had any kind of evidence base. The internet is essentially worthless” to families looking for good information on autism treatment, says Romanczyk.
In North Carolina, the official approach to working with children with autism is a program called TEACCh, devised in the 1970s by one of the pioneers of autism treatment, Eric Shopler. The acronym is a bit of a stretch but it stands for Treatment and Education of Autistic and related Communication-Handicapped Children. Basically TEACCh is a very pragmatic way of organizing a classroom or a home so that a child with autism can function more easily. TEACCh classrooms have well-defined areas for each separate activity, with strong visual signs and signals. They have clearly posted schedules–often with pictures as well as words– for children to follow. TEACCh learning activities are themselves well-defined with clear beginnings and ends. They often involved working through a task in a box, tranferring each finished item into another box until the first box is empty. TEACCh is not, in itself a curriculum. It’s more of a toolkit.
Teachers I’ve met in and out of North Carolina generally say good things about TEACCh, though behaviorists tend to complain that its research base is weak. I visited Malinda Pennington’s classroom at the Adams Elementary School near Raleigh, NC. Here’s a video tour of her TEACCh-style classroom, which serves six children with autism: four boys and two girls, ages 8 to 11. There are two aides in the classroom as well. Malinda is an amazingly warm, cheerful and caring teacher. Her classroom is a strikingly happy place. This is a 9-minute video–but worth it.
Despite the fact that autism is generally seen as a lifelong disability, idea of “recovery” is prominent in the scientific literature. Pioneering UCLA psychologist O. Ivar Lovaas insisted that with intense and early treatment, children could “recover” from autism. But his notion of recovery was fairly limited: succeeding in school without any special support, testing in the normal range on a few behavioral assessments. There’s no doubt that some individuals make extraordinary progress with intensive treatment. I met Sean at Autism Partnership in Seal Beach, California. Now 14, he was diagnosed with autism as a toddler. Back then, his mother told me, “he was completely silent, he didn’t respond to his name,” and he threw frequent tantrums. Today, after nine years of ABA therapy, his symptoms are so subtle that you can easily overlook them. Fantastic eye contact, fluent speech, empathy and awareness of other points of view. Is he recovered? He’d probably meet Lovaas’ criteria for recovery. He’s a good student and no longer has any special support at school. But, as this video shows, Sean is still working very hard on the fine points of conversation with his Autism Partnership teacher. Another elusive goal for him is being more comfortable “hanging out with friends.”