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DiversityNursing Blog

We Need To Do Something More Radical Than Awareness Month For Autism

Posted by Pat Magrath

Mon, Apr 17, 2017 @ 11:06 AM

AutismAwareness.pngApril is National Autism Awareness Month. The Autism Society states “National Autism Awareness Month represents an excellent opportunity to promote autism awareness, autism acceptance and to draw attention to the tens of thousands facing an autism diagnosis each year.”

This article written by a mother of an 8-year old autistic boy moved me very much. While she welcomes and appreciates the efforts of making people aware of autism, she’s hoping people will be more open and tolerant to the behavior of autistic people. She gives a very clear view of what her day-to-day life is like and offers suggestions on how people can help when they witness a struggling parent. We’ve all seen toddlers throw a temper tantrum, but what do you do when you see an older child have one? 

The author suggests we practice “radical hospitality”. Read on to discover what this concept is. Please let us know if this article educated and inspired you.  

“Do you want to make a donation?”

“Excuse me?” I look up from my wallet, making sure that my son is still next to me. He is, but he seems agitated. We need to go.

The teenage cashier at the sporting goods store repeats the lines of his script: “April is Autism Awareness Month. Would you like to make a donation to Autism Speaks?”

“No . . . just the shinguards please. I’m in a hurry.”

I doubt the young man at the register realizes I’m in a hurry because I’m here with my severely autistic son, Finn, the tall 8-year-old who in the brief time we’ve been here ran full speed in the aisles, buried his face in the racks of workout gear, then tried to knock the soccer balls out of their bins. I think about saying something to the cashier, like “No donation — Sorry! Please just let me get my autistic son out of here before he tears apart your store!” I’m sure that would boost his awareness. But it would be rude, and beside the point.

Autism Awareness Month, now in its 13th year, does raise awareness, or at least boosts Web searches on autism. But awareness is different than recognition. Awareness doesn’t increase the number of places where parents like me can take our behaviorally challenged children, for example. My son can’t sit still in a movie theater for the length of a movie. He gets overstimulated in children’s museums. In most restaurants, his yelps and difficulty staying seated draw sharp looks. People want to eat in peace. I get that, but I don’t want to be a prisoner in my home either. And I can only spend so much time at the laundromat, where Finn can generally bang on the machines and push around the ancient carts without disturbing anyone.

Generations ago, you rarely saw people with severe developmental disabilities in public spaces. A child like Finn would likely have been separated from our family not long after birth and placed in a state-run institution, like the Walter E. Fernald Developmental Center, called the Massachusetts School for Idiotic and Feeble-Minded Children when it opened in the mid-1800s. I’m glad that didn’t happen, and not just because publicly run schools like the Fernald were closed after years of scandal and sometimes outright abuse. Having Finn in our lives has given us so many inexpressibly tender moments. When a dog passes us at Fresh Pond, and Finn presses his body into mine for comfort, or when he absently threads his fingers through mine as we walk down the street — I feel a surge of affection. “How much do I love you?” I ask. He lifts his hands in the air (at 8, he’s still nonverbal). “SO much!” I say. Sometimes, Finn is right there with me.

But then he isn’t. I still find it hard to read his moods and follow his lead, even when doing something as basic as running an errand. Awareness of autism doesn’t ease this challenge; I’m hyperaware, and yet still don’t know how to manage his tantrums. Our society has difficulty accommodating severely disabled children like mine, no longer toddlers, yet unable to feed or dress themselves, or even use the toilet. There are some private residential facilities, but they cost more than $200,000 a year. Even highly functional kids with autism don’t easily fit into society.

There are things people can do to make daily life better for children across the autism spectrum. If you see a mom struggling to contain an agitated child in the middle of a street or store, instead of staring mutely or averting your eyes, ask her, “Are you OK? Can I help?” Or even, “I think you’re doing a great job.” (I can no longer hide that my son behaves strangely for a boy his age. To be fully seen and still accepted is the greatest favor I’ve received from strangers.)

Or consider practicing radical hospitality. What’s radical hospitality? If your child has a classmate on the high-functioning end of the spectrum, invite that classmate to your child’s next birthday party. If you have friends or relatives with children on the spectrum, ask them how they’re doing, and then really listen to their response. Drop off a bottle of wine on their back porch if you know they’ve had a particularly rough week. Give to an organization that provides service dogs for autistic children, or volunteer as an autism buddy. If you run a store that’s big enough, create a space for a ball pit where autistic kids can play. You can, of course, wear a puzzle-shaped pin to show support, but that by itself is just paying lip service to the concept of “autism awareness.” Let’s all take the radical step of moving from awareness to actually helping families who are living with autism every day.

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Topics: autism, autism awareness month, autistic

Pets May Help Improve Social Skills Of Children With Autism

Posted by Erica Bettencourt

Wed, Jan 07, 2015 @ 01:26 PM

By Carolyn Gregoire

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Having a family pet can be beneficial for child development in a number of ways, including keeping kids active and promoting empathy, self-esteem and a sense of responsibility. But dogs may be particularly beneficial for kids with autism, acting as a "social lubricant" that helps them build assertiveness and confidence in their interactions with others, according to new research from the University of Missouri. 

The researchers surveyed 70 families with autistic children between the ages of eight and 18, all of whom were patients at the MU Thompson Center for Autism and Neurodevelopmental Disorders. Nearly 70 percent of the participating families had dogs, half had cats, and some owned other pets including fish, rodents, rabbits, reptiles and birds. 

The study's lead author Gretchen Carlisle, a research fellow at the University of Missouri, observed that autistic children are were likely to engage socially in social situations where pets were present. While previous research has focused specially on the ways that dogs benefit the development of autistic children, Carlisle found that pets of any type were beneficial for the childrens' social skills.

"When I compared the social skills of children with autism who lived with dogs to those who did not, the children with dogs appeared to have greater social skills," Carlisle said in a statement. "More significantly, however, the data revealed that children with any kind of pet in the home reported being more likely to engage in behaviors such as introducing themselves, asking for information or responding to other people's questions. These kinds of social skills typically are difficult for kids with autism, but this study showed children's assertiveness was greater if they lived with a pet."

Carlisle observed the strongest attachments between the children and small dogs, although parents also reported strong attachments between their children and other pets, such as cats and rabbits. 

“Dogs are good for some kids with autism but might not be the best option for every child,” Carlisle said. “Kids with autism are highly individual and unique, so some other animals may provide just as much benefit as dogs. Though parents may assume having dogs are best to help their children, my data show greater social skills for children with autism who live in homes with any type of pet.”

Carlisle's research joins a body of work demonstrating the benefits of animal interaction among autistic children. A 2013 review of studies found that specially trained dogs, horses and other animals can facilitate increased social interaction and improved communication among autistic children, as well as decreased stress and problem behavior. 


Topics: learning, study, animals, health, healthcare, research, children, medical, communication, autism, dogs, skills

Caring for those with autism runs $2M-plus for life

Posted by Erica Bettencourt

Wed, Jun 11, 2014 @ 01:05 PM

By Karen Weintraub

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The parents of children with autism often have to cut back on or quit work, and once they reach adulthood, people on the autism spectrum have limited earning potential.

Those income losses, plus the price of services make autism one of the costliest disabilities – adding $2.4 million across the lifespan if the person has intellectual disabilities and $1.4 million if they don't, according to a new study published in the journal JAMA Pediatrics.

"We've known for a long time autism is expensive, but we've really never had data like this to show us the full magnitude of the issue," said Michael Rosanoff, associate director of public health research for the advocacy group Autism Speaks, which funded the research. "These are on top of the costs to care for a typically developing individual."

Jackie Marks knows the problem firsthand. The Staten Island, N.Y., mom has 13-year-old triplets, all on the spectrum and all with intellectual deficits.

Everything about their care costs more money, she says, from the diapers and wipes she still has to buy to the specially trained babysitters she has to hire every time she wants to go out. For karate classes, she has to pay for one-on-one lessons; the therapist helping with social skills costs $150 an hour per child.

"I enjoy my children immensely," Marks said. "I have a wonderful husband. That, at the end of the day makes it all worth it. But is it like a typical experience? No."

Marks quit her job with the state as a bank auditor to care for Tyler, Dylan, and Jacob. Her husband's job not only has to cover day-to-day needs, but he has to put away enough money to pay for both her and the boys after he retires. She hopes the boys will be able to work someday, but they'll never have the kind of earnings that will sustain them, she said, and will probably receive modest Social Security benefits once they turn 18.

Four things need to change to bring down the cost of autism for families and society, according to David Mandell, director of research for the Center for Mental Health Policy and Services at the University of Pennsylvania.

Adults on the spectrum need more job opportunities. There are many small success stories of individuals or small groups of people with autism who are employed, but "we need to be more creative about thinking about employment on a large scale," Mandell said.

Adult care must be improved so only people who really need expensive residential care get it, and everyone else can find support in their own community, he said. "I think in too many cases, these residential settings represent a failure of our society to provide community-based, cheaper options," he said. "More flexible, cheaper options would be a way to bring these costs down."

Families with autism need more opportunities to stay in the workplace. "Issues that face autism ultimately face all families," Mandell said. "If we had more family-friendly workplace policies, we might see substantial change in the way families were able to manage the work-life balance when they had children with (all kinds of) disabilities."

Society needs to take the long view, he said. Spending money diagnosing and helping young children on the spectrum will probably save money when they are older, by reducing disability and improving employability. "We often talk about the cost of care, and we don't spend much time talking about the cost of not caring," he said.


•Cost of supporting someone with an autism spectrum disorder plus intellectual disability: $2.4 million in the USA and 1.5 million pounds in the United Kingdom ($2.2 million in U.S. dollars)

•Cost of supporting someone with an autism spectrum disorder but no intellectual disability: $1.4 million in the USA and .92 million pounds in the United Kingdom ($1.4 million)


Topics: healthcare, Money, care, autism

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