From the Autism Speaks website

Sallie Tisdale has an article in Harper’s (subscribers only) this month about her autistic daughter. There’s an element of forestalled explanation to it; yes, she said “daughter.”

My daughter, Annie, still lives with us. She is twenty-six now and at the moment is sitting on the porch, looking out at the street. Soon she will come in and pace for a while, her head down. Later she will read the first few pages of a book—the same book, the same pages, that she read last week and the week before, and will read again tomorrow.

“Autistic son” delivers 175,000 results on Google. “Autistic daughter,” just 31,000. People are not sure why more boys than girls are found to have autism. Epidemiologically, the ratio is supposed to be about 3.6 boys to one girl.

It’s known that girls can learn to mask some of the effects of autism more easily than boys, so it’s possible that they are under-diagnosed in general. Studies show that hallmarks like “language deficits, tantrums, and aggression are all less common in girls than boys in the general population.” A British researcher raises the specter of a shadow population of “shy” girls who like to keep lists and count calories (even to anorexia).

Tisdale’s story is a primer on autism’s variability, and its effects on everyone who struggles with it, including caregivers. Tisdale recounts the lifelong challenge of it: the official optimism with which her daughter was handed off as she finished school, the time her daughter started hallucinating and had to be given antipsychotic medication. Writes Tisdale:

Long-term studies of people with autism are not reassuring. Autistic adults generally read poorly, have few math skills. Very few go to college, are employed, or lead independent lives. The majority say they have no friends.

This is not news to Seattle Children’s Autism Center. Tucked away behind a Chase bank at the back of a parking lot off 25th Avenue NE, the Center is visibly straining with the demand for services beyond the age of early intervention (a focus of the University of Washington’s Autism Center).

“Since we opened in August, we’ve seen over 1,000 different patients,” says Jim Meyer, Director of Psycho-Social Services. In late February, I sat down for interview with him and Dr. Felice Orlich, Program Director, to talk a little about girls and autism, and about how caring for autism is, belatedly, moving beyond grade-school years.

“We have 26 different providers now. We have developmental pediatricians, neurologists, psychologists, psychiatrists, speech/language pathologists, behavioral therapists, nurse practitioners,” continues Meyer. He’s a large, bluff man and you get the feeling he is reorganizing office space in his head as he talks with you.

“We brought in a lot of new providers in January, and we’re at capacity from a space standpoint. I gave up my office back in January when we brought in new providers, and as of today, our shared space is filled up, too. But we’re not meeting demand yet, and in fact demand keeps increasing with the more recognition we get, the more awareness of us being here,” he says.

Dr. Orlich is a pediatric neuropsychologist, and she fields my questions about girls and autism with a practiced air, joking that she can lecture all day, so stop her when I’ve had enough. “We know genetically–when we look at girls and boys with autism, we see that different genes show up in boys with autism than girls with autism. So we already know that there’s genetic variation in the two groups.”

Sex differences in general, she suggests, may explain why girls are able to mask some of autism’s effects. “So we think that girls, in general, have better skills in social communication than boys do. We see differences in the brain structure of girls and boys, in the amygdala for example. It’s one of the parts of the brain that helps you to judge the way that people’s facial expressions look. Girls who are less severe may not be picked up with a diagnosis of autism until they’re a lot older, in their early teens.”

“Traditionally, we’ve thought girls’ autism is more severe than boys,” explains Orlich. “But the thing that’s really different is IQ. Girls who have a diagnosis of autism generally have lower IQ than boys who have a diagnosis of autism. That’s the first difference, and it makes the girls’ autism look more severe, but the question is, are their symptoms of autism more severe? And the answer is probably in some places yes and some places no.”

“What we see for girls on the spectrum is that’s where they really struggle,” with peers as they grow older. “A lot of the skills that we’re asking girls for don’t really become really challenging until middle school. We orient little girls toward social knowledge, right away, from when they’re really young. It gives girls a leg up on not expressing some symptoms of autism.

“What they can’t really learn to do naturally is how to do what girls do in conversation. Girls’ social relationships are all about talking, all about the ins and outs of what you do, picking up on the social mores, what’s cool and what’s not. For boys with autism as they age, it’s less about conversation and more about doing. Or their conversational topics can be about doing something. What girls do is play a conversational game. Especially in middle school it’s just mind-boggling,” she says, laughing.

People with autism are famously literal, and girls with autism will have trouble with more sophisticated, abstract, social communication, too. “They get stuck,” Orlich says. “One girl says to another, ‘Did you see Becky’s outfit? That was so out there!’ Now, when you say ‘out there,’ to a kid on the autism spectrum, she’ll think, ‘Out where?’ Any other girl would know it means it’s really cool or out of date.

“Girls on the spectrum will have really specific interests, just like boys on the spectrum do. We see less repetitive behaviors in girls, but the same amount of repetitive interest: getting over-focused on pets, saving the animals, knowing every kind of cat or horse–that kind of interest we’ll see equally across boys and girls.”

Sallie Tisdale mentions that her daughter develops interests, but then lets them fall–she wishes she could find one thing to orient her life around. It’s what Dr. Orlich calls the “good side to autism,” the ability to focus on one thing to the exclusion of all others.

It’s an aid to treatment: “You might want to push against their hyper-focusing, but that would not be a good choice. You need to join it and use it, and then expand from there. With a typical kid, you shift their attention. With autism, you say, I’m going to step into that and leverage that interest. It’s more of an inside-out approach.”

If girls don’t tantrum, they do have a higher incidence of depression than boys with autism, which may be related to their greater chances of going undiagnosed. “For a girl with autism, let’s say she’s not identified until nine, she’s high-functioning, maybe with Asperger’s, her IQ is normal, so she’s been able to “pass”–maybe she’s been the quirky kid in the class?” says Orlich, building a case history.

“Kind of spacey, maybe one friend, but not making trouble. She’s nine years old and still blissfully in her own little world. She gets into middle school and the lightbulb goes on that she’s really different. Depression is a challenge there.

“With a later diagnosis, of course, you’ve missed the window of early intervention. The way we think about autism is we modify ‘social brain’ circuitry, we change what rewards that circuit. There’s a window of opportunity to have an impact because of neurological plasticity. Although girls can be responders to treatment even at a later age–they really can be–the other challenge will be co-occurring mental health issues like anxiety and depression.”

But the bottom line, repeat both Orlich and Meyer, is that any given child with autism requires individual attention, not a sex-based template. “Boy, girl…we still need to say, Who are you?” emphasizes Orlich. “What are your strengths and weaknesses? Some boys love to talk, some girls don’t like to talk at all.”

At Children’s they’re continually adding to therapy modalities. They use cognitive behavioral therapy, tweaked to address autism’s tunnel-vision and resistance to change. They teach conversation skills individually and in groups. “We’ve added in a component for anxiety management where we teach kids some of the mindfulness strategies and that’s been really effective, too,” says Orlich.

“It’s just a lot more individually focused than trying to find one thing that works and then roll it out to everybody,” add Meyer.

The Center handles about 300 visits a week, or 1,200 visits a month, and it’s set up so that almost all the staff perform dual roles. Researchers have clinic duty; front desk schedulers all have at least a Bachelor’s in psychology, and do a kind of triage for providers, as well as give advice and support when stressed families call. In the lab, study is ongoing on telemedicine for rural areas, there are clinical trials for medication, clinical trials for interventions, looking at social skills and cognitive behavioral therapies.

The autism epidemic, as it’s been called, has largely been portrayed in terms of its effect on children. But with no cure in sight for autism, children are still growing up, and we are learning a lot more about autism affects people over their full lifespan. Children’s sees a wide range of ages.

“Some people have a diagnosis of autism and they’re coming here looking behavioral therapy or social skills groups, they might be coming looking for someone to adjust their medications, and then we have the people who are still looking for a diagnosis,” says Meyer. “One distinction between us and the UW Autism Center is they only see little kids. We get a lot of the older kids because there’s not a lot of other places for them to go other than here. Even on the diagnostic side, which is a little more slanted toward younger kids, we get a fair number of referrals coming in for older kids who haven’t been diagnosed yet.”

“Or complex older kids,” chimes in Orlich, “because we have the combination of medicine, and behavior, and speech here. For really young child intervention, if you can afford it or your insurance will cover it, there are quite a few providers in the area. What’s happening for us is that the population we see would be the population that would present for diagnosis later anyway–lower income families, in general.”

Orlich says parent training is becoming more and more important. “The overarching piece that’s starting to define our lab is looking at family systems. We’re seeing that there’s a real impact on intervention. I also study also quality of life of people with autism, and their families. We’re looking into ways to support siblings, because they’re often the long-term caregivers.

“We have a really big safety net for the families and I think we’re different from other centers that way because we have this support component that runs parallel to and is just as important as the clinical service we provide. One of the visions we talked about early on is, we’re kind of a home. Even if we can’t serve you here, we’ll figure out how to get you that service and what the next step is.”

Meyer jumps back in: “We’re also seeing a lot of kids that now they’re eight or nine, or thirteen or fourteen, and they’re making a transition into puberty or middle school or high school, and new behavior starts popping up. There’s this anxiety that wasn’t there before. A lot of the people coming here are, ‘My son just got kicked out of school because of his behavior, we need some help.'”

“Autism over someone’s life is something of a moving target,” Orlich says. “Kids develop and change, and kids with autism develop and change, just like any other child. Fortunately for the kids and parents, because we have this stop-start approach, parents are out there trying to use these skills and so are the kids, and that’s a good learning experience for them. We’re not there all the time. Otherwise, they can’t try it out and feel competent on their own.

“I’ve been been in both kinds of systems, and in the system where parents come out of early intervention, which is very intensive and well-supported, if a center or clinic doesn’t have that next step for them, it’s very anxiety-provoking.”

If you take the numbers that Autism Speaks uses, with an incidence of autism at one in 110, the scope of the issue is daunting. The U.S. population is about 305 million. The resulting population “on the spectrum” would be around 2.8 million people, the population of Utah, Arkansas, or Kansas. Almost three million people who will have sometimes severe difficulty with any of the transitions that life throws at you: graduating from high school or college, finding a job, losing a job, moving into an apartment, moving out of an apartment, dating, marriage, divorce, the death of a parent….

All the things that can throw people without autism for a significant loop, can derail an otherwise high-functioning person with autism. Even things that are, in essence, progress in life, because they represent change, can be a barrier. What the staff at Seattle Children’s are seeing is the the vanguard of that 667 percent increase in diagnoses of autism, the consequences of which will inevitably change the structure of mental health care throughout all our lives.