Five Reasons to Take Heart If Your Child Is Diagnosed With Autism

I was that mom who had to hear from a stranger that her two-and-a-half-year-old son had autism. I’ve got good news. It will get better.

I’ve been that mom. The one whose child should have been talking and wasn’t. The child who fell apart and threw such huge tantrums – kicking and screaming so that it seemed like the preschool was experiencing its own earthquake.
I was that mom who had to hear from a stranger that her two-and-a-half-year-old son had autism. I wanted to scream due to the wrongness of the situation. I have good news if you find yourself in these shoes: It will get better.

Early intervention is important

According to the Journal of the American Academy of Child and Adolescent Psychiatry, early intervention improves the symptoms of autism. I remember thinking back to when my son was three years old. He could only say about twenty words. If you asked him a question, he would answer it with a random word. You could say, “what do you like to eat?” and he would answer: “red”.
It seemed impossible that he would ever learn to speak in coherent sentences. However, with the help of a special education program from our local regional center, he rapidly gained those skills

You are not alone

According to the Centers for Disease Control (CDC), 1 in 68 children is on the autism spectrum. When I heard these numbers, I balked. That number didn’t mean a lot to me until I started thinking about it on a larger scale. That means that out of every 100 children, 1.4% have autism or in a small city, 280 children out of 20,000. If you reach out– you will find groups on Facebook sharing the same experience. You can also contact Autism Speaks for support groups.

Consistency and stability will help

A new study published in July 2015 by the Frontiers in Neuroscience suggests that if autistic people are treated early in a very predictable environment, symptoms could lessen. One of the reasons that we felt like our son did so well in his therapy was that we treated him the same as his neurotypical sister.
Social events were a consistent part of our lives so we made them a consistent part of his life too. Sometimes this was very hard as my son was deathly afraid of crowds and would grab my leg and cry, but we just kept at it. Eventually, he became so desensitized crowds didn’t bother him anymore.

The severity of autism can change

According to new research from Pediatrics, ten percent of children improve dramatically by age eight. Sometimes the psychologists and doctors will say that the severity of autism appears worse than it really is because a lot is unknown when the child is diagnosed that young.
When my son was two, the doctors told us that he had moderate, classic autism. When I asked them if my son would ever be able to answer questions correctly, they said that they had no idea. However, once my son turned four-years-old he would not stop talking and he now loves to answer any questions.

Sometimes the doctors are wrong

My son definitely had big, red autism flags but when we had him re-tested at six-years-old, he wasn’t even close to being on the spectrum. Doctors sometimes don’t know if this is recovery from autism, misdiagnosis or just that the brain has learned to work around the disorder. However, according to the Journal of Autism and Developmental Disorders, an estimated 3 to 25% of children move off of the autism spectrum.
I am that mom who can tell you that the best thing you can do for your child is to support them with consistent routines, early intervention, and therapy. I saw a huge change in my son within a month of starting intense behavioral therapy six hours per day, five days per week. The earthquakes for us are just memories now.

The Parenting Regret That Caught Me by Surprise

Sometimes what’s best for our kids is for us to let them lead the way and to remember that not every “problem” needs solving.

I took away my son’s pacifier when he was four years old, and I still regret it.

It seemed like the perfect time. We’d just watched “Toy Story 3,” in which Andy sorts through his childhood belongings before heading to college. He decides to store the important ones, including Buzz Lightyear, in the attic.

My son James, who has autism, took an interest in our attic. What was up there? What could we put up there?

I jumped at the chance. From his toddler years, I’d done my best to restrict the pacifier to his bed. I was a child psychologist and the very thought of running into one of my patients around town, pacifier-sucking behemoth in tow, made me want to hide my head.

Plus, everything I’d read cautioned about pacifier use once kids started getting their permanent teeth.

The pacifier was a sign of weakness, of immaturity, of difference. I knew James had some developmental delays, but when he was four, the idea that he had autism was relatively new. James was attending a regular pre-Kindergarten, and I thought he needed to look like a regular pre-Kindergartner. Even in bed.

So James and I packed his few remaining pacifiers into a Ziploc bag and made a trip up to the attic. “Where do we put them?” he asked, looking around at the vast, dusty, hot, mostly empty space.

I suggested a ledge near the attic entrance, “so we can visit.” He set them down, gave them a little pat, and said, “Bye, pacis.” He climbed down the attic stairs and headed to the playroom, seeming none the worse for wear.

James never asked for his pacifier again, but that didn’t mean he didn’t miss it. Like lots of kids with autism, he had uneven language development. At that point, he’d still never told me he was hungry, never told me he was thirsty, but he could give the proper technical name for any construction truck he might spot around town.

When he had a strong need he’d have a tantrum, and I’d have to figure it out.

I have a family history of premature pacifier disposal. My older brother loved his pacifier, but my mother decided he needed to give it up very soon after he turned two. A friend suggested she take my brother to the zoo and feed it to the baby raccoons, reasoning that they needed it more than he did. My brother had nightmares about the baby raccoons for months afterward.

I knew all about the raccoons. Letting James use a pacifier for two extra years was my way of learning from my mother’s mistake. If I’d known then what I know now, I’d have let him keep it as long as he wanted and use it whenever and wherever he wanted.

The pacifier wasn’t a problem, but a solution.

Looking back through home movies recently, I confirmed something: James’ younger sister started sucking her fingers before she was an hour old.

“Wow, look at her,” I say in the video. “So strong.” Seeing the video reminded me of how competent infants can be.

I saw an infant at a Mardi Gras parade, which is not at all unusual or frowned upon here in New Orleans. The baby girl rubbed her forehead against her mother’s chest in the Baby Bjorn, soothing herself to sleep as the marching bands blared. It was 1 p.m., after all. Naptime.

That kind of self-regulation is so hard for people with autism. So hard for James. He used the pacifier in his bed, to help him cope with the stress of being tired and of being alone in his room. With all that was going wrong with James – everything that led to his autism diagnosis – his self-soothing with the pacifier was something right.

What’s two extra years? If James had done as his sister did with her fingers, kept sucking his pacifier for comfort until age six, then given it up on his own, the whole thing would’ve been a success story for James. I shouldn’t have butted in.

I’ve developed a rule of thumb. It started with my acceptance of James’ autism and my own limitations in coping with it, even though autism was my specialty for 10 years before his birth.

My first choice is always to find what James is doing right, and bolster that. Tackling a problem – which might exist only in my mind – is always the last resort.

Posted on Categories Raising KidsTags

New Research: Kids With Autism Fixate on Mouth Rather Than Eyes

Kids with the autism fixate longer on a speaker’s mouth rather than the eyes when the conversation turns emotional.

Where do your eyes focus during a conversation? An innovative study by University of Vermont researchers reveals that for children with autism spectrum disorder, the answer depends on how emotional the conversation is.

The study, published in Research in Autism Spectrum Disorders, shows that children with the developmental disability fixate longer on a speaker’s mouth rather than the eyes when the conversation turns emotional.

It’s the first study of its kind to use eye tracker technology to monitor eye movement during an interactive conversation, and the results could affect the way speech therapists treat the estimated 1 in 68 children who struggle with the social, communication and behavioral challenges caused by autism spectrum disorder (ASD).

4 Ways to Prepare Your Kids for a Neurodiverse World

Ever since my son was diagnosed with Autism Spectrum Disorder, one of my biggest fears has been how he’ll be perceived by his peers.

Since my son was diagnosed with Autism Spectrum Disorder, one of my biggest worries has been how he would be perceived and treated by his peers as he grew up in our neurodiverse world.

Although I love his unique way of seeing the world, I’m also aware that his social challenges make his daily life a struggle. At home, my husband and I encourage him to pursue his unique passions while providing the scaffolding of rules, consistency, and order that make him feel safe. But sometimes, a quiet dread fills me as I imagine his future.

We live in a world of complexity and nuance, and nowhere is that more evident than in the social sphere, where autistic kids struggle the most. Social interactions are rarely predictable; they are filled with metaphors, innuendos, subtleties of gesture and tone that neurotypical people take for granted. 

To overcome their “mindblindness,” kids like my son, who have milder forms of autism, are encouraged to develop social thinking skills—essentially, how to read body language, imagine other people’s thoughts, anticipate reactions, and control their own.

That can be done through classes, play groups, books, videos, and other tools. And although social interactions will always generally be challenging, given these tools, many autistic kids can adapt to and thrive in their social environments. [su_pullquote align=”right”]My son’s quirks are a fundamental part of who he is, so I also believe that my son should be accepted and embraced for who he is.[/su_pullquote]

For decades, making autistic kids “indistinguishable from their peers” has been the guiding principle behind many therapies and interventions to which autistic kids are exposed. As a parent, I get it.

I don’t want my kid excluded because he hums all the time, or prefers to wear his clothes backwards because they feel better to him, or because he can’t stop talking about his special interests. I also want him to develop genuine, reciprocal relationships with his peers. 

And yet, my son’s quirks are a fundamental part of who he is as a human being, so I also believe that my son should be accepted and embraced for who he is.

Although we can be thankful that autistic kids are no longer institutionalized and wholly excluded from participating in mainstream classrooms and environments, they often continue to be segregated in special ed classrooms, and ignored or bullied by peers who don’t have the skills to communicate or develop meaningful relationships with them.

Neurotypical Kids Aren’t Prepared to Live in an Increasingly Neurodiverse World

This is a mistake.

  • One in 68 people are on the autism spectrum.
  • It’s estimated that 5-10 percent of kids have ADHD.
  • Around 10 percent of the population is dyslexic.

Our kids live in a world where they will have friends, teachers, boyfriends, girlfriends, colleagues, bosses and family members who are on the autism spectrum or have any number of other neurodevelopmental disorders. Like other forms of diversity, exposure to neurodiversity is now a given. And yet, neurotypical kids are not prepared to live in an increasingly neurodiverse world.

We need to equip them with tools to understand how autistic people and other non-neurotypicals experience the world, and how to meaningfully include them in their lives. In celebration of Autism Acceptance Month, I’d like to offer a few ways to get started.  

[su_note note_color=”#FFE0AB”]

Neurotypical or NT, an abbreviation of neurologically typical, is a neologism originating in the autistic community as a label for people who are not on the autism spectrum. However, the term eventually became narrowed to refer to those with strictly typical neurology. –  Neurotypical – Wikipedia

[/su_note]

Acknowledge difference but emphasize shared humanity

Kids are not the magical color-blind, difference-blind creatures that many people wish they were. Between the ages of 2 and 5, kids start to notice differences in gender, race, and abilities. They also begin reinforcing and shunning deviations from social norms.

The best way to raise accepting and inclusive kids is to acknowledge, talk about, and explain behavior. The behavior of autistic kids, for instance, can range from mildly eccentric—maybe a kid who won’t stop talking about train schedules or outer space, long after the rest of the group has moved on—to more noticeable behaviors, including hand-flapping, rocking back and forth, and meltdowns.

Explain what autism is, acknowledge the behavior and the reasons behind it. For example, hand-flapping, spinning, and other repetitive movements are how many autistic kids self-regulate in response to overwhelming emotions such as excitement or frustration. Talk with your child about how they react to the same emotions.

Do they scream? Jump up and down? Run around? The more kids understand the reasons behind the behaviors, and realize that the expressions are simply different than their own, the the more likely they will be to accept them.

Foster empathy for the differently wired brain

Understanding how my child thinks and experiences his environment is one of the things that has challenged me the most as a parent.

Imagine being dropped into a culture completely different from your own, one that has a radically different sense of humor, expectations around politeness and niceties, how and when to show anger, etc. If you’ve ever had this experience, you know how hard it can be to understand even basic social rules and norms. That’s how autistic people describe their everyday social interactions.

And while my son is working hard at learning “social thinking” skills to enable him to communicate in appropriate ways with his peers, I’m keenly aware that his peers aren’t necessarily learning “autistic thinking” skills to enable them to meet him where he is, too. In a neurodiverse world, it’s important for neurotypical people to understand, to the extent that we are able, how autistic and other non-neurotypical people perceive the world.

[su_pullquote align=”right”]Flipping the tables on perspective-taking is important, because autistic kids become autistic adults.[/su_pullquote]Flipping the tables on perspective-taking is important, because autistic kids become autistic adults—they are the coworkers and partners that we will work and spend our lives with.

Schools and workplaces need to openly acknowledge autism and other neurodevelopmental disorders in the same way that they acknowledge other kinds of difference. We need a neurodiversity curricula to incorporate readings, discussions, and activities to encourage students not only to understand how neurologically diverse brains are wired, but to develop neurodiverse social skills that promote inclusion and acceptance of non-neurotypical kids.

Our kids are learning to think how neurotypicals do. It’s not too much to ask for some reciprocity.

Explain that communication comes in all different forms

Some kids with autism struggle with language acquisition, and some use very little spoken language at all. However, even so-called “non-verbal” autistic kids communicate. In the same way that deaf people use sign language, non-verbal autistic kids rely on gestures, pictures, and typing.

Kids with milder forms of autism tend to think literally, and can’t understand metaphors or wordplay. This can lead to miscommunication and confusion. If your child has an autistic child in his or her classroom, talk with your child’s teacher about how your child and others in the classroom can best communicate with that child. And if your kid has a friend on the spectrum, explain how to communicate with them directly.

Teach that inclusion, while not always easy, is worthwhile

The autistic brain is unique, capable of recognizing patterns and identifying inconsistencies in logic and flaws in data. The highly visual thinking abilities of some autistic kids makes some of them incredible artists and creative problem solvers. Kids with milder forms of autism often become talented engineers, computer programmers, mathematicians, and musicians.

At the same time, few caregivers or autistic people would argue that living with autism is easy. Many autistic people are extremely sensitive to light, sounds, certain smells, textures, and tastes; they are easily overwhelmed by things are unpredictable and unscheduled. All this makes daily life is a veritable minefield, leading to meltdowns.

[su_pullquote align=”right”]One of the misconceptions about autistic kids is that they don’t like to be around other people.[/su_pullquote]Many parents who have kids on the spectrum don’t tell other parents because they fear their kids will be excluded from parties and playdates, and indeed, this is a common occurrence for many autistic kids. One of the misconceptions about autistic kids is that they don’t like to be around other people.

To be sure, my son often refuses to attend birthday parties because he becomes overwhelmed, and he’s slow to warm up on playdates. He also takes “brain breaks” to read or just tune out. But just like everyone else, my son craves human connection and friendships. He just connects differently, and at his own pace.

If your kid has a friend or sibling on the spectrum, they will undoubtedly experience the highs and lows that come with autism. Teach them that it’s worthwhile to cultivate these relationships—the perspectives and insight they will gain from having an autistic friend or sibling will be unlike any other relationship in their lives.

Resources for Kids

I Love Being My Own Autistic Self
Inside Aspergers, Looking Out
Can I Tell You About Autism?
All Cats Have Asperger Syndrome
The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism
Sesame Street and Autism

Milo the Robot Helps Kids With Autism Spectrum Disorder

Milo the humanoid robot was developed to help kids with Autism Spectrum Disorder engage, learn and navigate life.

Developed by the Dallas start-up, Robokind Robots, Milo the robot was created to help meet the challenges faced by children with Autism Spectrum Disorder; the fastest growing developmental disorder in the U.S.

Robokind specializes in advanced social robotics. The Robots4Autism arm of the company focuses on building and improving the “expressive, humanoid” robot Milo, as well as providing Milo-based curriculum and research.

Milo keeps children with ASD engaged in many ways, most obviously, because he’s a robot. He also has an expressive face, stays calm, and is encouraging.

Robokind recently beat out 600 other start-ups in the North American Startup Contest, garnering the attention of several large angel investors.

The cost of Milo’s first iteration, the Zeno R50, was $15K per unit. Milo will be more widely available to schools and families at a significantly lower cost.

Source: Mic, Robokind

 

“NeuroTribes” And The Surprising Truths About Autism

Especially for parents raising kids on the spectrum, “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity” is nothing short of a revelation.

Earlier this year, my 5-year-old son was diagnosed with Autism Spectrum Disorder.  The diagnosis did not come as a complete surprise.

Over the previous year, my husband and I had grown increasingly aware of our son’s socially averse behavior and rigid thinking. He avoided eye contact with most people and melted down if routines or food weren’t precisely as expected. And he seemed not to understand – or even be concerned with – social cues.

Still, despite his social and behavioral challenges, my son had unusual abilities.

He had taught himself to read when he was four and was a book lover with an incredible memory. His singular focus over the previous year had been learning everything – EVERYTHING – about outer space, writing “books” about the solar system and drawing thousands of pages of the planets in fine detail, including the hundreds of moons which he knew by name.

He often spoke like an adult and could sit and focus on tasks for long stretches of time. Although his introverted nature was not unlike many of our nerdy, socially awkward family members, we knew he probably had Asperger’s syndrome, that particular part of the autism spectrum that applies to kids like him: verbal, focused acquirers of information who can’t seem to make sense of the social world around them.

The moment the developmental pediatrician confirmed that our son had Autism Spectrum Disorder (Asperger’s syndrome having been folded into a broader umbrella diagnosis in 2013), we found ourselves part of the strange fellowship of parents with children on the autism spectrum who are told to look at their child’s challenges and strengths with new eyes.

While it was a relief to have an explanation for the behavioral challenges we were confronting on a daily basis, in the context of an autism diagnosis, our son’s precocious ability to read was reframed as a “splinter skill.”

His unusual ability to focus was “perseverating.” And his passion for data and facts was determined to be a “classic sign of autism.”  “I wish I had better news for you,” the doctor said apologetically as we left his office, “but at least some of these kids are really smart!”

We were frustrated. How was it possible that his strengths and abilities were pathological?  In the months that followed, we waded through the morass of behavioral, dietary, psychiatric and educational advice, becoming more confounded. The dominant focus on autism seemed to be on research into causes, preventions, and cures. Why? Where was the chorus of experts providing us with advice on how we, as parents, could champion and channel our son’s abilities while helping him cope in a world that would always seem alien and confusing?

Cover-largeFor a parent of a child on the autism spectrum, Steve Silberman’s NeuroTribes: The Legacy of Autism and the Future of Neurodiversity is nothing short of a revelation.

Silberman’s premise, which he makes clear from the beginning, is not only that is there a place in the world for autistic intelligence, but that one of our greatest challenges as a society (especially given the rising number of autism diagnoses, which currently stands at one in 68)  is creating a world in which that intelligence is fully utilized, where neurodiversity is not just “accommodated,” but celebrated.

The book grew out of reporting Silberman did for Wired magazine, largely in San Francisco and Silicon Valley, one of the regions where the “epidemic” of autism has been most closely watched (and where two crucial countercultures – that of the nerdy tech sector and the vaccine-fearing counterculture – find strange intersections).

The book begins with a lengthy history lesson, and indeed, it is through Silberman’s sweeping and lovingly detailed history of the evolution of autism that the reader unlocks the understanding of how our society came to our current understanding and response to autistic people today.

Although autism has always been present in humans, its characteristics were not fully articulated, nor was it identified as a unique disorder, until the 1930s, when it was “discovered” simultaneously by Hans Asperger in Austria and Leo Kanner in Baltimore.  Both Asperger and Kanner noticed behavioral similarities amongst some children brought to their respective clinics. These were children who had difficulty making eye contact and with social interaction were preoccupied with rules and systems, and had extraordinary abilities in areas like math, art, music, and science.

Asperger was convinced that it was possible for children with this disorder (which he called “autistic psychopathy”) to thrive with the help of tailored teaching methods that would draw on their fascinations, and he foresaw important roles for them in contributing to the betterment of society.

Asperger was also the first person to recognize that autism was clearly a continuum, with nonverbal and verbal children sharing core characteristics. He called these children, affectionately, his “little professors,” since many of them were prone to talk about their pet interests at length. As the Nazis accelerated their plans to rid society of “mental defectives” with a large-scale campaign to euthanize disabled children and adults, Asperger gave the world’s first public talk on autism, in which he defended his patients’ right to exist.

Cognizant of the Nazis’ intolerance of visibly disabled children, Asperger focused on what he called the “most promising cases” of children in his care, arguing that these children were not only capable of accomplishing great things in the world, but that their social difficulties were inextricably linked to their gifts. His framing of autism likely saved the lives of many children, but before he was able to disseminate his work widely, his clinic was destroyed in an air raid–and with it, the case studies of all of his patients.

Silberman’s examination of Asperger’s life and contributions is made all the more poignant when one considers Leo Kanner’s radically different understanding of autism, which was to shape the diagnoses and approaches to treatment for decades to come.

Kanner, who saw only the most challenging cases of autism, determined it to be a very rare disorder consisting of a narrow range of behaviors. More significantly, he promoted the idea that autism had somehow been triggered by cold and distant parenting styles. “Refrigerator Mothers” were likely to blame, and only psychiatry could ameliorate the damage that had been done.

By emphasizing the most debilitating aspects of autism, and by implicating parents, Kanner paved the way for decades of mistreatment of autistic children.

The chapters detailing the lifelong institutionalization of children in horrific conditions where shackling, neglect and corporal punishment were the norm, as well as a chapter on the darker side of treatments such as Applied Behavior Analysis that are still widely used today, will be particularly difficult for parents to read.

Perhaps most significantly, Kanner’s work shaped the current emphasis on finding causes, prevention and “cures” for autism, rather than focusing on expanding services and designing adaptive technologies and spaces for autistic people. It also ensured that autism remained stigmatizing for families–a legacy that sadly persists today. From the moment of diagnosis onwards, parents are told to view their child’s strengths as deficits, to question the causes, and to hope for a cure.

NeuroTribes Review

It wasn’t until the 1970s that Asperger’s work was rediscovered by the British cognitive psychologist Lorna Wing, who was seeking answers to the variety of autistic traits she was discovering in the general population.

Largely due to her efforts, the clinical definition of autism was expanded to include the true spectrum it is today, and Silberman makes clear that it is the broadened diagnostic criteria that have been responsible for the rise in autism cases.

In addition to Asperger and a handful of researchers willing to question the status quo, the true heroes of Silberman’s book are parents and autistic people themselves who have fought for the full inclusion and acceptance of autistic people in schools, workplaces and the public sphere.  Without the parental advocacy groups of the 1970s, disabled children would still be denied the right to a public school education; and parents are still on the front lines of fighting for services for their children in their schools and communities every single day.

Autistic people themselves have also stepped out of the shadows with the rallying cry “Nothing About Us Without Us,” proudly carrying the autistic label and insisting on full inclusion in policy discussions having an impact on their lives.

The neurodiversity movement is leading efforts to promote social support systems and highlight the necessity and value of neurological differences. And while Silberman’s focus is on autism, the concept of neurodiversity extends to anyone whose brains are wired differently, including those with dyslexia, ADD/ADHD, and mood disorders.

Silberman, who spent years with autistic individuals and their families to write this book, is  remarkably restrained when detailing the medical interventions approaching quackery that certain members of the medical community have pushed on parents desperate to help their children. However, he clearly believes that we need to redirect at least some of the money that is being poured into the research identifying causes into expanding services and destigmatizing autism, and he makes a persuasive argument based on history alone.

A portion of Silberman’s work chronicles autistic innovators: from Henry Cavendish to Nikolas Tesla to Temple Grandin to Silicon Valley’s geeky workforce, many innovations in the modern world have come from autistic minds.

I recently got together with a group of parents who have young autistic children. As we shared stories of parenting our kids, two common themes emerged: the extraordinary abilities our kids have, and the immense challenges we all face in getting access to the services and support that our kids need. One of the strangest things about receiving an autism diagnosis for your child, in fact, is simultaneously receiving the message that your family is now part of a ballooning “epidemic,” even as the experience of advocating for your child often feels like a solitary exercise in having to proffer the same explanations and reinvent the same wheel, over and over.

Parents like myself are mired in the daily worries, exhaustion, and yes, joys of raising a child on the spectrum.

For me, the greatest contribution of NeuroTribes is that it reinforces and gives historical vindication to our instincts to create learning and living environments that respond to our children’s challenges while supporting their abilities.

That Silberman combines this analysis with so much warmth and respect for his subjects–autistic children, their families, and their champions–makes the book not just part of a parent’s toolkit, but also a source of wisdom and companionship, as if the caring hero of Silberman’s narrative, Hans Asperger, were still among us.