A young man at an autism camp near Brenham once asked this writer not her name but rather when she was born. Given the date, he scarcely paused before correctly stating, “That was a Sunday.” Perhaps you’ve encountered a savant like that.
More likely, you’ve met a smart but socially awkward “Aspie” — someone with what used to be called Asperger syndrome, before it was rolled under the umbrella of autism spectrum disorder. If so, think you know autism? You’re partly right.
Given the meteoric rise in diagnoses — at least 1 in 54 children, up from 1 in 110 a decade ago, according to the Centers for Disease Control and Prevention — it’s getting harder to run into people who haven’t been touched by autism. But many still don’t realize how broad the spectrum is.
“It’s only Rain Man, or only Sheldon (the “Big Bang Theory” character). That is still really, really challenging,” says Amy Wood, who sits on the board of directors of the Texas Autism Academy, a nonprofit, tuition-based private school in The Woodlands. Her son, 18-year-old James, is minimally verbal.
April 6: Children with autism are invited to hippity-hop to FOMO Factory, where Success on the Spectrum hosts a sensory event and photos with the Easter Bunny (bring baskets to hunt for eggs). Seventeen rooms designed to stimulate the five senses. Cosplay Alliance Project members dressed as Disney characters and acrobatics by Artz Performance Academy. Coronavirus protocols followed. 3-7 p.m. at FOMO Factory in the Galleria, 5085 Westheimer, Suite 4710. Free; register at eventbrite.com/e/free-autism-event-tickets-145114680917.
April 8: KNOWAutism Foundation, nonprofit that helps families with diagnostics, treatment, intervention and education, holds seventh annual "As I am" Luncheon. Virtual and in-person event includes champagne raffle and inaugural Sippi and Ajay Khurana Houston Heroes Awards honoring community leaders committed to group's mission. 11:30 a.m., Junior League of Houston, 1811 Briar Oaks. Proceeds benefit scholarship fund. Tickets, $350 and up; know-autism.org/knowautism-luncheon-2021/.
April 17: Social Motion Skills presents Jigsaw Grant Book Signing and Meet and Greet. Artist/illustrator Grant Maniér and author Julie Coy sign copies of their newest children's book, "Dr. Temple Grandin Meets Grant and His Friends." Outdoors and socially distanced. 2-3:30 p.m. Spring Valley Village Park, 1025 Campbell. Tickets, $10 and up; ow.ly/4jHm50E0aAU.
April 24: Avondale House, which offers special-education schooling and adult services, presents "From Our House to Yours," virtual fundraiser featuring guest speaker Dr. Peter Hotez, vaccine researcher and pediatrician whose adult daughter has autism. General admission tickets free; donations encouraged and registration for livestream required; givebutter.com/13KUSW.
April 26: Autism advocate Justin Moehn joins "Embracing Diversity Talk Show" hosts Leona Filis, special-needs attorney, and Thelma Mi Mi Scott for discussion. Noon on 99.5 FM (Radio Dabang).
The disorder is marked by impaired communication and social interactions, repetitive behaviors and a narrow range of interests. But talents and challenges vary widely from one person to another. A boy who can calculate in the millions in elementary school might not tie his shoes until he’s 10. Other children never learn to speak or dress and need care their entire lives. And there’s everything in between.
April is National Autism Awareness Month, intended to promote understanding. It officially kicks off with the United Nations-recognized World Autism Awareness Day on April 2. But a growing number of advocates, including in Houston, say it’s time to move from awareness to acceptance.
‘Not broken’
Society has come a long way since parents began promoting autism awareness in the 1970s, but “we have a long way to go,” says Nichole Daher. In 2015, she founded Success on the Spectrum, a network of therapy franchises, all but two of which are owned by parents of children with autism. Her daughter, 14-year-old Isabel, is a mildly affected ninth grader who attends Bellaire High School.
Back in the ’70s, “it was, ‘Let’s find a cure. It’s so burdensome,’ as if the children didn’t have a voice. Now, the autism acceptance movement is led by people with autism, not the parents. Those on the spectrum say ‘an athletic girl, an autistic girl.’ It’s just part of who they are. If my daughter didn’t have autism, I wouldn’t know who she is. She’s not broken.”
That self-advocacy involves influencing the lingo. For some time, the norm for discussing disabilities has been “people first.” One would say “a person with autism” rather than “an autistic person,” to reflect that an individual is more than a disability. More recently, many on the spectrum have voiced a preference for “autistic” or interchangeable use of the terms.
Ido Kedar, thought to be the first novelist with nonspeaking autism, uses “autistics” and “typicals” as well as “person challenged by autism” or “person with autism.”
“I think people have to lighten up, honestly. I have autism and I am autistic. I am human and I have a disability,” writes Kedar, who received therapy as a boy at the HALO (Helping Autism through Learning and Outreach) Center in Austin. “I prefer being recognized as smart. That’s all I care about. The language police don’t have bigger things to worry about. I do.”
The Autism Society of America has issued a statement that it, along with other disability-advocacy groups, such as The Arc and Easter Seals, is formally shifting references from “Autism Awareness Month” to “Autism Acceptance Month.” In Houston, Success on the Spectrum and Social Motion Skills, which provides services to children and young adults with autism, have adopted the change.
“While we will always work to spread awareness, words matter as we strive for autistic individuals to live fully in all areas of life,” Christopher Banks, president and CEO of ASA, is quoted as saying. “As many individuals and families affected by autism know, acceptance is often one of the biggest barriers to finding and developing a strong support system.”
Research has led to better understanding of the biology of autism — and less emphasis on “fixing” it. Many, including Daher, contend it is a natural brain variation. Still, those with the diagnosis need help fitting into the world. And experts agree: The earlier the intervention, the better.
“If your child needs help, don’t be ashamed to ask for it,” Daher says.
Why ashamed? Stigma remains around disabilities in general, and experts still encounter families who see autism as a personal failure.
At home and beyond
Wood, president of the Houston-area chapter of nonprofit Families for Effective Autism Treatment, and Bev Braman, a longtime autism consultant to several Houston-area public school districts, each hold parent/caregiver training sessions on ways to support loved ones. Braman, who has 40 years in the field, says prior experience, cultural and belief systems influence families’ ability to accept autism. Some in Houston’s diverse population even see it as “punishment of sins from their forefathers,” she says. Another misperception is that if children just spend more time around typically developing peers, they’ll outgrow it.
In the school setting, Braman helps educators understand the need to “honor the learner’s strengths.” A broad, general education often doesn’t work well for the autistic mind and can impede progress, she says. Instead, she stresses the practical. “What is work going to look like for this person?” Braman asks teachers and special-education coordinators. “If they like working in a library, let’s start working on alphabetizing.”
As long as schools must emphasize standardized testing, including of those with moderate or severe autism, and that “everyone needs to learn the same things,” outcomes will be less than ideal, she says.
This could prove dire in their later years. “There’s an 80 (percent) to 85 percent increase of abuse for people with a disability who require caregiving, and that’s most people on the spectrum,” Braman says. “… I don’t care if they know the planets — can they tell you they’re sick?”
Wood notes that poor treatment, such as bullying, also harms “the person with autism who shows no signs outwardly … society doesn’t give that individual much room. The suicide rate is three times higher than among their typical peers the same age.”
Inching toward acceptance
Propelling society from awareness to acceptance will take more than just rebranding.
“It’s going to take not being a jerk if (the autistic individual) points out that you’re fat or ugly,” Daher says facetiously. “Sometimes they can be Captain Obvious.” Such moments can be learning opportunities, with a less knee-jerk response. “No one person (on the spectrum) is going to make a full transition. We have to be able to meet in the middle.”
Daher recommends a nationwide campaign, like the D.A.R.E. program, to bring disability understanding into schools and the workplace.
Wood champions public-private collaboration. She notes the Texas Autism Academy falls under the Texas Neurodevelopment Center, a newly formed nonprofit that seeks to partner with colleges and workforce agencies to aid the transition of its students as they age. Programs to help those with autism in higher education, such as Texas A&M University’s, show promise, she adds.
To Braman, acceptance will depend on who the stakeholder is.
“In small towns like Angleton, they take care of their own. The farmer is going to hire (young adults with autism) to work in the gardening program.” In Houston, she says, the resources are greater, but adult programs can turn people away because of behavioral difficulties. So she’d like to start smaller.
“I ask parents, ‘How many of you have a friend with a significant intellectual disability or classic autism?’ … Go make a friend. We sit here with this almost righteous perspective (of demanding children be included), and we’re not doing it ourselves.”
Daher, Wood and Braman all have hope for Generation Z.
“That inclusion piece is part of that generation’s heart,” Wood says. “… This is a wonderful time to harness this awareness of society about accepting people who are different, no matter what your difference is.”
“A Special World” shares programs and experiences by and for the disabled community in Greater Houston.
suzanne.garofalo@chron.com
"time" - Google News
April 01, 2021 at 04:08PM
https://ift.tt/3cGjDtr
Is it time to move from autism awareness to acceptance? Houston advocates weigh in. - Houston Chronicle
"time" - Google News
https://ift.tt/3f5iuuC
No comments:
Post a Comment