Article - Autism Wars: Why there's a war between parents of children with autism and autistic adults

[Crossbreed]

I was curious whether some autistic adults blamed their parents for their autism...

Parents ARE to blame for autism (but only for its cool parts!

).

 

[Aneka]

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."

• As long as people stick to the rules of common decency and netiquettes they should be able to post online whatever they want.
• Being harressed online or becoming a target for cyberbullying and hate speech is always wrong and a crime.
  
• Only a single individual should be held responsible for their actions. Not society, not any random group of people.
• Different opinions matter equally. Thus, it's completly irrelevant whether someone is autistic or not. It's a beneficial experience to all of us.
• Don't judge. Ignore what you don't like. Respect people's voices. You wouldn't want to be shut up by bullying either.
• Good intentions can lead to bad actions and might be harmful to someone or the community. So always be mindful of your words and actions. 'Do as you would be done by.'

 

[Ronald Zeeman]

my parents are both dead, out of six of us it looks like 4 were undiagnosed, 3 out of the four did really well, married, family good careers.

 

[Ronald Zeeman]

Parents ARE to blame for autism (but only for its cool parts!

).

six really bright kids my parents were not complaining.

 

[Greatshield17]

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."

Great article, I may sound really naive for saying this but, maybe there is someway we can reach-out to them and come to an agreement on things; I’ve repeatedly said that Autism Awareness seems to be the key to Autism Acceptance, and these parents assuredly want Autism Awareness as well, (albeit, for Level 3 Autism) perhaps there is someway to come to an agreement where the whole truth regarding Autism is presented. (Despite our disagreement on a lot of other issues like ABA) I’ve already emailed Eileen Lamb in an effort to reach-out to her; unfortunately I looked into her some more, and found some troubling things about her, she’s appeared on Auti$m $peaks’ Podcast and has posted some problematic things online. However, I’d be more than willing to talk with Eileen Lamb if she responded to my email, and in fact, I’d actually, with the help of the Lord’s Grace; be willing to appear on Auti$m $peaks’ Podcast, if they actually let me present my case and encourage listeners to question their views. (Or at the very least, let me record the conversation in-full and let me upload it to my yet-to-be-active YouTube channel afterwards.)

 

[Crossbreed]

...unfortunately I looked into her some more, and found some troubling things about her, she’s appeared on Auti$m $peaks’ Podcast and has posted some problematic things online.

Her association with Autism Speaks already hinders any meaningful dialogue.
(I have brought up Dr. Martha Herbert's idea of aggravated autism with them, but they will have none of it.)