autism

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Commentary: I Needed Help With My Autistic Son. Others Need Help Too

The author, Susan Senator, and her son, Nat (Courtesy of Ned Batchelder)

The author, Susan Senator, and her son, Nat (Courtesy of Ned Batchelder)

The winter my son Nat broke our playroom window with his head was an endlessly snowy one. He was home on school break and on sensory overload — rocking too wildly on a rocking chair, too close to the bay window. A nauseating shatter, like the crack of thin ice underfoot.

Miraculously, he was not hurt.

Nat has fairly severe autism, and back then he struggled with all the unstructured time and the oppressive indoors of a New England winter. We all did. The season of days spent inside wears on all families. But if you are also living with a child with a complex developmental disability, who is nearly non-verbal and with sensory issues, it can mean that he will likely need extra help staying safe.

Back then I didn’t realize just how sensitive Nat was to confusion and unorganized days, or how his anxiety roared inside him, jangling his nerves, forcing him to pace, to scream, or to pinch. I understand now that autism wasn’t the enemy — lack of help was. We needed someone trained in autism education, who could work directly with Nat on activities of daily living, self-calming, social skills and how to behave out in the community; someone who could also work with us on how to organize Nat’s time at home to comfort him with a better sense of order. Continue reading

Something Was Wrong With My Autistic Adult Son, But He Couldn’t Say What

Nat Batchelder and his mother, Susan Senator, at the Special Olympics, Foxborough, Mass. (Courtesy of Nat Batchelder)

Nat Batchelder and his mother, Susan Senator, at the Special Olympics, Foxborough, Mass. (Courtesy of Nat Batchelder)

By Susan Senator
Guest Contributor

Something was wrong with Nat.

I got the call about my 25-year-old severely autistic son just as I was parking, about to meet a friend for coffee. It was from Richard, the day program director. Like many adults with significant disabilities, Nat spends his weekdays at a day program, an organization that helps his employer so that he can work — he does carriage return at a local Shaw’s. When Nat is not working at Shaw’s, he is out in the community with support staff and others individuals in his program, volunteering at Meals on Wheels and various activities.

Richard got right to it: “I don’t know how to tell you this. But Nat came in with puffy eyes and was really not himself, you know the way he’s been lately.”

A poisonous feeling started flooding my throat. Oh, I knew.

Richard continued: “He was hanging his head, quiet, not talking to himself, not walking around. I asked him some ques­tions — he started crying a little.” Nat always talks to himself and paces. Although he can talk a little, for the most part you have to really know him to figure out what he’s trying to say. He is very severely impacted by autism and some developmental delays.

“What questions?” I broke in, wanting to cry myself. But I already kind of knew.

Richard had asked Nat questions about whether someone had been touching him, hurting him.  Continue reading

Study: Maternal Obesity And Diabetes Bring ‘Multiple Hits,’ May Raise Autism Risk In Children

A provocative new study finds that children born to mothers with a combination of obesity and diabetes before and during pregnancy may have up to four times the risk of developing autism spectrum disorder.

On their own, obesity as well as pre-pregnancy diabetes or gestational diabetes increase the risk of autism slightly, researchers report. But the study suggests that co-occurring obesity and diabetes may bring “multiple hits” to the developing fetal brain, conferring an even higher risk of autism in the offspring than either condition on its own.

According to the U.S. Centers for Disease Control and Prevention, about 1 in 68 children has autism spectrum disorder, which also includes Asperger syndrome and other pervasive developmental disorders.

This new study — led by researchers at the Johns Hopkins Bloomberg School of Public Health and published in the journal Pediatrics — was based on analyzing the medical records of 2,734 children who have been followed from birth at the Boston Medical Center between 1998 and 2014. (Of that group, 102 of the children had a diagnosis of an autism spectrum disorder. )

So what might be leading to this increased autism risk? Researchers don’t really know, but they raise several theories in the paper. In general, the possible mechanisms relate to immune and metabolic system disturbances associated with maternal obesity and diabetes that might cause inflammation and other problems for the developing fetus.

One of the study authors, Daniele Fallin, an epidemiologist and chair of the Department of Mental Health at Hopkins’ public health school, said in an interview: “We know that both diabetes and obesity create stress on the body, generally, and a lot of that stress manifests in disruption of immune processes and inflammation. Once you have the disruption in the mom, that may lead to inflammation problems in the developing fetus, and inflammation during neurodevelopment can create problems that manifest as autism.” Continue reading

Autism, Then And Now: Sweeping New Book Puts ‘Epidemic’ In Perspective

In May of 2000, Wired magazine writer Steve Silberman was covering an Alaskan cruise for a hundred distinguished computer programmers, and asked one of the most distinguished, Larry Wall, creator of the programming language Perl, if he could interview him later on at home.

“Sure,” was the answer. “But just so you know, we have an autistic daughter.”

Six months later, Silberman was writing about another high-profile Silicon Valley family, and asked for another home interview. The reply was eerily similar: Yes, but “I should tell you, we have an autistic daughter.”

Soon after, Silberman recalls, he was sitting at a San Francisco cafe and telling a friend about that odd coincidence, when “a woman at the next table blurted out, ‘Do you realize what’s happening? I’m a special-ed teacher in Silicon Valley. There is an epidemic of autism in Silicon Valley. Something terrible is happening to our children.”

Author Steve Silberman (courtesy)

Author Steve Silberman (courtesy)

He got a chill — the kind of chill that makes him want to start reporting and researching. At that point, he says, “I was very naive about autism. Like most people at the time, everything I knew about autism I had learned from ‘Rain Man.’ ”

He is naive no longer. First, he wrote a landmark article in Wired, “The Geek Syndrome,” about why the autism diagnoses in Silicon Valley might be going up. (The theory: People carrying genes for autism who were working in the technology industry had more social opportunities to meet one another and have children together than they’d ever had in history — a process that geneticists call “assortative mating.”)

And now, Silberman has written “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity,” a history of society’s changing attitudes toward autism, as seen through the eyes of parents, clinicians and autistic people themselves. It’s due out Aug. 25 and — if my appreciation for its breadth, depth and power is any indication — it’s likely to make a big splash. (Also provoke some controversy, given its unflinching takes on some of autism’s more contentious issues, from possible causes to biomedical “cures”.)

I asked Silberman to answer what seem to me the most burning questions about autism: Is prevalence really rising? How to explain kids who lose their diagnosis? What does the research promise? Our conversation, lightly edited, beginning with more about “The Geek Syndrome”:

SS: The article came out, it was very well received, and I got tons of email about it — and then I kept getting email about it for 10 years, which is very unusual. But here’s the thing: When I wrote the article, most of the families I talked to were keenly interested in what had caused their child’s autism. Some believed that it was vaccines, some believed that it was environmental contaminants, some thought it was genetics.

But by the time a decade had gone by, what they were worried about was not what had caused their child’s autism; what they were worried about was the shocking lack of services for autistic teenagers and adults — like transitional services to help them go from school to the workplace, services to help them learn how to live independently in the community, and so on.

So I began to be haunted by the fact that my narrow focus on the dynamics of autism in high-tech communities had, in a sense, led me astray, and that there was a much larger problem for autistic people and their families worldwide, which is the availability of services. That’s what parents are really wrestling with on a day-to-day basis.

neurotribes

So you moved with the times…and also, services are something we can actually do something about right now.

Exactly. That’s actually a more profound statement than one might think. Some very well-meaning people think that society’s best investment would be to ‘cure autism.’ Well, we’ve been working on curing schizophrenia for a very long time, and for decades, psychoanalysts were working on ‘curing’ homosexuality. But these are very, very complex genetic conditions, and have a lot of contributing factors; perhaps a much more humane thing to do is to ensure that autistic people and their families have access to happier, healthier, safer, more secure, more engaged and more productive lives. That goal is within our reach right now and doesn’t depend on the next medical breakthrough.

You’ve done a lot of reporting over the years into potential risk factors for autism in the environment — this week’s cause-of-autism du jour — and you know what happens to those stories: They make a big splash, everyone’s talking about them, and then they quietly go away.

If we look at what has been blamed for causing autism over the last few years, it’s everything from autoimmune dysfunction, impaired sugar metabolism, antidepressants in the water supply, mitochondrial disorders, living near a freeway, too little oxytocin, too much testosterone… the list goes on and on.

“So it’s an epidemic of recognition, really.”

– Author Steve Silberman

Might some of those things contribute to autism? Sure. But what we have to remember is that there have been, in recent years, at least three big studies that look at the crucial question: Is autism actually increasing in the population or is it just that we’re getting better at diagnosing it, and becoming more aware of it as a society, and learning how to spot it in early childhood?

And the conclusion of all three studies — including one in Sweden in 2015 that involved over 1 million children, including 19,000 twin pairs, and one in England by a researcher named Terry Brugha — was that the rates of autism have not really been going up. What has been going up is the rates of diagnosis. So it’s an epidemic of recognition, really.

So given the latest, biggest, best studies, it really does look like that’s what’s going on, and not an actual rise in prevalence? Continue reading

Big Study Finds Autism Risk Higher If Teen Mom Or Parental Age Gap

In this 2014 photo, Colleen Jankovich works with her 11-year-old autistic son, Matthew, who is non-verbal and requires 24/7 care, in Omaha, Neb. (Nati Harnik/AP)

In this 2014 photo, Colleen Jankovich works with her 11-year-old autistic son, Matthew, who is non-verbal and requires 24/7 care, in Omaha, Neb. (Nati Harnik/AP)

This we already knew: That the children of older parents, particularly older fathers, are at heightened risk for autism. Now, a big new study just out in the journal Molecular Psychiatry, funded by Autism Speaks and encompassing more than 5 million children across five countries, adds some new age factors ito the risk equation. From the press release:

• Autism rates were 66 percent higher among children born to dads over 50 years of age than among those born to dads in their 20s. Autism rates were 28 percent higher when dads were in their 40s versus 20s.
• Autism rates were 15 percent higher in children born to mothers in their 40s, compared to those born to moms in their 20s.
• Autism rates were 18 percent higher among children born to teen moms than among those born to moms in their 20s.
• Autism rates rose still higher when both parents were older, in line with what one would expect if each parent’s age contributed to risk.
• Autism rates also rose with widening gaps between two parents’ ages. These rates were highest when dads were between 35 and 44 and their partners were 10 or more years younger. Conversely, rates were high when moms were in their 30s and their partners were 10 or more years younger.

The study notes that it seems clear why an older father might heighten autism risk: Sperm mutations accumulate over the years. But if older age heightens risk, why in the world should the autism rate be higher when mothers are in their teens? And why should a gap in age between parents matter?

Stay tuned for further research to follow these leads. These latest findings “suggest that multiple mechanisms are contributing to the association between parental age” and autism risk, the study’s authors write.

On Point: Adulthood With Autism, And The ‘Cliff’ As Kids Age Out Of Care

In this May 23, 2014 photo, Colleen Jankovich works with her 11-year-old autistic son, Matthew, who is non-verbal and requires 24/7 care, in Omaha. (AP)

In this May 23, 2014 photo, Colleen Jankovich works with her 11-year-old autistic son, Matthew, who is non-verbal and requires 24/7 care, in Omaha. (AP)

It’s not surprising that this week’s On Point hour on the “stark realities of autistic adulthood” drew a raft of calls from parents: Rates of diagnosed autism in America have risen dramatically in recent years, and now, a whole generation of autistic children are entering young adulthood.

As WBUR’s Martha Bebinger recently reported in a powerful piece titled “Troubled Future For Young Adults On Autism Spectrum,” this is a “pioneer generation” that often lacks supports in place.

Our colleagues at On Point have posted a write-up of the many calls from parents that their segment prompted, including these:

“This is the first time I’ve broken up about this,” caller Lisa from Nashville said. “I have a 21-year old daughter here in Nashville. She has moderately severe autism, severe speech impairment, intellectual disabilities.”

A backlog of applicants waiting for state support in Nashville has led Lisa to leave her state once her daughter ages out of the school-age care currently provided her.

“My plan is to relocate and to leave the state of Tennessee,” Lisa told us. “We’ll be able to provide housing for her, but how can a family that’s not making 300,000 and up provide that 24/7 care that she needs? There is no safety net for these people.”

Other callers, like Maisel in New Orleans, found school-age care for children with autism no better than the nonexistent care for adults. Continue reading

Pets As ‘Social Lubricant,’ Helping Kids With Autism Develop Assertiveness

(Onesharp/Flickr via Compfight)

(Onesharp/Flickr via Compfight)

If you’ve never considered your dog or cat part of your social network, maybe it’s time to start.

A new study from the University of Missouri-Columbia finds that pets of any kind in the home may help autistic children develop crucial social skills.

Gretchen Carlisle, research fellow at the Research Center for Human-Animal Interaction in the M-U College of Veterinary Medicine, found that pets serve as a “social lubricant,” making kids more likely to engage in behaviors such as introducing themselves, responding to other people’s questions or asking for more information.

While researchers have already found that dogs provide great assistance to children with autism, Carlisle explains that her study looks at the possible benefit of all types of pets. These pets also help the greater public interact with autistic kids in social settings. “When children with disabilities take their service dogs out in public,” adds Carlisle, “other kids stop and engage. Kids with autism don’t always readily engage with others, but if there’s a pet in the home that the child is bonded with and a visitor starts asking about the pet, the child may be more likely to respond.” Continue reading

Tackling Autism In Babies? Small Study An ‘Absolute Miracle,’ Says Mom

Megan says the experimental trial she participated in with her daughter Isabel was "an absolute miracle," transforming the child from a troubled baby who looked headed for autism to a typical, happy preschooler.

Megan says the experimental trial she participated in with her daughter Isabel was “an absolute miracle,” transforming the child from a troubled baby who looked headed for autism to a typical, happy preschooler.

Research out this week suggests that it’s never too early to begin therapy to treat some of the defining symptoms of autism. Karen Weintraub reports on the promising new findings in USA Today under the headline, “Study: Autism Signs In Babies Can Be Erased.”

Karen expands on her report here:

In a small pilot study — the first to look at starting therapy in babies this young — researchers at the University of California Davis’ MIND Institute, began treating 7 babies who showed symptoms likely to turn into autism later. By their third birthdays, five of the children no longer exhibited any symptoms of autism, and a sixth was diagnosed with mild autism.

Because the study was so small, and autism cannot reliably be diagnosed in infancy, the researchers stopped short of calling the treatment a breakthrough. But they said they will be following up with a larger study, which they hoped would confirm the results.

One mother involved in the trial described the treatment as “an absolute miracle” for her daughter, Isabel. The mother, Megan, asked not to be fully identified, but talked openly about the trial and its benefits for her family.

At nine months old, Isabel wouldn’t turn her head when someone walked into a room calling her name. She never babbled, Megan said. She was physically delayed in fine and gross motor skills, and didn’t seem to know how to play with toys. All those are signs commonly seen in children who go on to be diagnosed with autism.

Megan heard about the trial through her pediatrician and the family – including Isabel’s dad and her older brother – moved from the Seattle area to Sacramento, so they could participate in the study.

In 12 weekly sessions, lead researcher Sally Rogers coached Megan and her husband John as they played with baby Isabel. Where most children will smile or giggle when happy, Isabel’s facial expressions didn’t change much; where others might cry if scared by a loud sound, Isabel rarely reacted to anything in her environment. But Rogers showed them that Isabel might glance over quickly when she was interested or look at her hands when something was too loud or overwhelming – cues that Megan and John could take to do more or less of whatever they were doing.

Once they learned to “speak” Isabel’s language, Megan said she and John were able to react to her and engage with their baby for the first time. Eventually, through this interaction, Isabel learned that she could communicate – and have fun doing it. That primed her to learn even more, Megan said.

Megan said she and her husband would never have figured out what to do without the coaching. Continue reading

Governor Reviewing Mass. Bill That Would Expand Autism Supports

Gov. Deval Patrick, in an April 29 file photo (Josh Reynolds/AP)

Gov. Deval Patrick, in an April 29 file photo (Josh Reynolds/AP)

Many parents of children on the autism spectrum are celebrating passage of a bill that is among dozens already on Gov. Deval Patrick’s desk.

The bill would create a tax-free savings account for autism and disability care; would require Medicaid coverage for autism behavioral treatment; and would give thousands of residents with autism access to state disability services. Currently only those whose IQ is under 70 qualify.

Barbara L’Italien, with the advocacy group ARC of Massachusetts, has seen autism rates skyrocket since her son was diagnosed in 1990.

“It is a public health crisis,” she says. “It is something we need to wrap our arms around and be proactive about, and I think this legislation really attempts to do that.”

The costs of expanding Medicaid and disability services is not clear.

A spokeswoman says Patrick is reviewing the bill.

OBs: No Link Between Labor Induction And Autism

The nation’s most influential group of obstetrician-gynecologists concludes that there’s no connection between labor induction and autism. Earlier reports suggested that there’s was a possible link, but even that research, published in JAMA Pediatrics, was complicated and somewhat murky.

(popularpatty/flickr)

(popularpatty/flickr)

Here’s ACOG’s latest guidance on the matter, from the news release:

Current evidence does not support a conclusion that labor induction or augmentation causes autism spectrum disorder (ASD) in newborns, according to a new Committee Opinion released by the American College of Obstetricians and Gynecologists (the College).

While some studies have suggested an association between ASD and the use of oxytocin for labor induction or augmentation, available evidence is inconsistent and does not demonstrate causation, according to the opinion, which also found important limitations in study design and conflicting findings in existing research.

Given the potential consequences of limiting labor induction and augmentation, the College’s Committee on Obstetric Practice recommends against changes to existing guidance regarding counseling and indications for, and methods of, labor induction and augmentation.

“In obstetric practice, labor induction and augmentation play an essential role in protecting the health of some mothers and in promoting safe delivery of many babies,” said Jeffrey L. Ecker, MD. Dr. Ecker is chair of the Committee on Obstetric Practice, which developed the new Committee Opinion. “When compared with these benefits, the research we reviewed in assembling this Committee Opinion, relative to the utilization of oxytocin, had clear limitations. Because of this, these studies should not impact how obstetricians already safely and effectively use labor induction and augmentation when caring for their patients.” Continue reading