I found this to be a very well-written and balanced article. I especially liked the tips for ways to communicate about autism toward the end.
Link to the article! This page also has links to related articles and videos - It's a bit of a rabbit-hole.
Content of the article, shamelessly scraped off the page, part 1:
Why there's a war between parents of children with autism and autistic adults
As moms and dads try to find community online, autistic teens and adults are watching — and weighing in.
Aug. 13, 2021, 12:10 PM PDT / Updated Aug. 16, 2021, 10:44 AM PDT / Source: TODAY
By Laura T. Coffey
When Eileen Lamb’s toddler son, Charlie, was diagnosed with autism spectrum disorder, she didn’t have a big support network nearby. So, like many other isolated and overwhelmed moms, she turned to social media.
“I was just looking for people that I could relate with,” Lamb, 31, of Austin, Texas, told TODAY Parents. She said her decision to share her family’s autism journey on Facebook and Instagram turned out to be “a double-edged sword.”
“Every time I posted something about Charlie, hundreds of people with autism would attack me and say, ‘You clearly hate your child, we need to call child protective services on you, you’re a piece of s---, you’re not autistic so you cannot speak about your son’ — it was very, very, very intense. It was horrible.”
Lamb thought the vitriol might subside when she opened up on social media about her own autism diagnosis, which she received a year or so after Charlie’s.
“It actually got worse,” Lamb recalled. “People told me that I had self-internalized ableism, that I was self-hating. ... I felt like I was being bullied into silence.”
In the age of social media, parents everywhere grapple with issues of sharing — and potentially oversharing — information about their kids.
For parents whose children have been diagnosed with autism, ADHD and other neurological conditions, decisions about what to share online can be even more fraught. A post that one parent views as “raising awareness” or “seeking acceptance” could be fodder for future embarrassment and regret when the child being posted about becomes an adult.
Autistic teenagers and adults are on a crusade to help neurodiverse people get a fair shot in workplaces, academic institutions and other settings. In recent years, autistic self-advocates have popularized the hashtag #ActuallyAutistic and are pushing to rename “Autism Awareness Month” in April to “Autism Acceptance Month.” Many call out characterizations of autism on social media that they find offensive or misleading.
“There’s this tragedy narrative out there implying that autism is a fate worse than death — when it simply is not,” said Amanda Seigler, 39, an autistic mom of autistic children who serves as an administrator of a Facebook group called Autism Inclusivity, which has more than 70,000 members.
“There are too many ‘martyr parent’ groups out there — groups where parents use their children for sympathy,” Seigler continued. “They say, ‘Oh, poor me, my child had a meltdown today.’”
Some parents of autistic children share posts that are excessively personal, including video footage of their kids having meltdowns, holding up signs describing the medications they’re taking and wearing diapers or sitting on toilets well after the age of 10.
Autistic adults tend to hate posts like these. They say that in addition to violating children’s privacy, the posts do not reflect the experiences of most autistic people.
“These parents are adults, so they should know better,” Seigler said. “Once a post is online, it’s there forever.”
Camille Proctor, 55, a Michigan mom of a 15-year-old autistic son, agreed. Proctor is the executive director and founder of the Color of Autism Foundation, a nonprofit organization that educates and supports Black families with autistic children.
“Your child is going to grow up someday and see this,” Proctor said of sensitive online posts. “Is it really healthy that you’re letting them know they were a burden to you?”
The existence of such posts spotlights a painful reality: Autism is a spectrum, and parents of kids on the profoundly disabled end of that spectrum are often overwhelmed and terrified for their children’s future. Some parents choose to vent their feelings in public forums, and they can be vilified for it.
“I feel very strongly that the complaints by mildly affected autistic adults that parents are violating their kids’ privacy by writing about them represent the most insidious form of censorship,” said Amy Lutz, a Pennsylvania author, mom of a 22-year-old severely autistic son and vice president of the National Council on Severe Autism. “Severely autistic individuals don’t have the capacity to consent, therefore parents are forbidden to speak about them, therefore the only voice the public is supposed to hear is that of autistic adults who claim to speak for the entire spectrum."
Link to the article! This page also has links to related articles and videos - It's a bit of a rabbit-hole.
Content of the article, shamelessly scraped off the page, part 1:
Why there's a war between parents of children with autism and autistic adults
As moms and dads try to find community online, autistic teens and adults are watching — and weighing in.
Aug. 13, 2021, 12:10 PM PDT / Updated Aug. 16, 2021, 10:44 AM PDT / Source: TODAY
By Laura T. Coffey
When Eileen Lamb’s toddler son, Charlie, was diagnosed with autism spectrum disorder, she didn’t have a big support network nearby. So, like many other isolated and overwhelmed moms, she turned to social media.
“I was just looking for people that I could relate with,” Lamb, 31, of Austin, Texas, told TODAY Parents. She said her decision to share her family’s autism journey on Facebook and Instagram turned out to be “a double-edged sword.”
“Every time I posted something about Charlie, hundreds of people with autism would attack me and say, ‘You clearly hate your child, we need to call child protective services on you, you’re a piece of s---, you’re not autistic so you cannot speak about your son’ — it was very, very, very intense. It was horrible.”
Lamb thought the vitriol might subside when she opened up on social media about her own autism diagnosis, which she received a year or so after Charlie’s.
“It actually got worse,” Lamb recalled. “People told me that I had self-internalized ableism, that I was self-hating. ... I felt like I was being bullied into silence.”
In the age of social media, parents everywhere grapple with issues of sharing — and potentially oversharing — information about their kids.
For parents whose children have been diagnosed with autism, ADHD and other neurological conditions, decisions about what to share online can be even more fraught. A post that one parent views as “raising awareness” or “seeking acceptance” could be fodder for future embarrassment and regret when the child being posted about becomes an adult.
Autistic teenagers and adults are on a crusade to help neurodiverse people get a fair shot in workplaces, academic institutions and other settings. In recent years, autistic self-advocates have popularized the hashtag #ActuallyAutistic and are pushing to rename “Autism Awareness Month” in April to “Autism Acceptance Month.” Many call out characterizations of autism on social media that they find offensive or misleading.
“There’s this tragedy narrative out there implying that autism is a fate worse than death — when it simply is not,” said Amanda Seigler, 39, an autistic mom of autistic children who serves as an administrator of a Facebook group called Autism Inclusivity, which has more than 70,000 members.
“There are too many ‘martyr parent’ groups out there — groups where parents use their children for sympathy,” Seigler continued. “They say, ‘Oh, poor me, my child had a meltdown today.’”
Some parents of autistic children share posts that are excessively personal, including video footage of their kids having meltdowns, holding up signs describing the medications they’re taking and wearing diapers or sitting on toilets well after the age of 10.
Autistic adults tend to hate posts like these. They say that in addition to violating children’s privacy, the posts do not reflect the experiences of most autistic people.
“These parents are adults, so they should know better,” Seigler said. “Once a post is online, it’s there forever.”
Camille Proctor, 55, a Michigan mom of a 15-year-old autistic son, agreed. Proctor is the executive director and founder of the Color of Autism Foundation, a nonprofit organization that educates and supports Black families with autistic children.
“Your child is going to grow up someday and see this,” Proctor said of sensitive online posts. “Is it really healthy that you’re letting them know they were a burden to you?”
The existence of such posts spotlights a painful reality: Autism is a spectrum, and parents of kids on the profoundly disabled end of that spectrum are often overwhelmed and terrified for their children’s future. Some parents choose to vent their feelings in public forums, and they can be vilified for it.
“I feel very strongly that the complaints by mildly affected autistic adults that parents are violating their kids’ privacy by writing about them represent the most insidious form of censorship,” said Amy Lutz, a Pennsylvania author, mom of a 22-year-old severely autistic son and vice president of the National Council on Severe Autism. “Severely autistic individuals don’t have the capacity to consent, therefore parents are forbidden to speak about them, therefore the only voice the public is supposed to hear is that of autistic adults who claim to speak for the entire spectrum."
