It all started when Jennifer Ethirveerasingam looked at her April issue of Parents magazine. Mother to a child with autism and aware that April is Autism Awareness Month, she began to page through the magazine, looking for an article—anything—about autism. Finding nothing, she told some friends, who posted on the Parents magazine Facebook page under the heading “Lack of Autism Coverage.”
“What a missed opportunity to raise awareness, provide information and to include families with autism in your parenting discussions,” wrote Beth Andersen, the first to broach the topic on the magazine’s wall.
Within hours, this slight gained traction in the online autism community, collecting dozens of comments on the Facebook posting and inspiring a string of posts around the blogosphere criticizing the magazine for neglecting a demographic that makes up a sizable chunk of the parenting population.
Alysia Butler, author of the blog Try Defying Gravity, says that a few words from Parents could make a real difference in the lives of both parents already living with children with autism and those who might need intervention in the future.
“Maybe I would have had my son diagnosed sooner had I read an article on red flags, or maybe I wouldn’t have felt so alone if I had seen a story on how families are thriving despite their child’s diagnosis,” Butler wrote in her comment on the Facebook page. “I appreciate that you have some information sprinkled throughout the year, but a special section in April would have meant so much to so many.”
Parents‘ initial response on their Facebook page was to point out the sole item in the April issue mentioning autism, a paragraph about bed tents, which some parents use to keep their children from wandering at night.
Not satisfied with that response, or the information that Parents has two online-only articles in the works, comments continued to roll in. Two days into the conversation, Parents chimed in again, apologizing for making families of children with autism “feel dismissed or unappreciated.”
“We would like to say again how grateful we are for your feedback and for the reminders in the last 48 hours that autism is not just 1 in 110,” they posted. “It’s about real people and real families.” Parents followed up with a request for autism families to submit their stories for inclusion in a blog series.
Mixed reaction ensued, most notably outrage that online-only articles of print magazines are far less likely to be read than print versions of the same magazine that tend to sit in pediatrician offices for months at a time.
Ethirveerasingam, who writes a blog called The Adventures of Boy Wonder about her son with autism, says that she is disappointed in the magazine’s response. “No one will see our stories. They haven’t helped anyone who is now wondering about their child or made the 1 in 110 [subscribers] who are living with autism feel like their children matter.”
Beth Andersen, who started the “lack of autism coverage” thread, says, “Families with autism are sick and tired of being marginalized and left out of the discussions. There are enough of us out here that, when we raise our voices together, we demand to be heard.”
Calling the unceasing need for advocacy one of the hardest parts of living with autism, Andersen continues, “It is exhausting. I think so many of us are simply saying, ‘stop making it so hard for us to live like normal families and have at least some measure of peace—some downtime from the constant advocacy and educating.’”
With so many parenting topics to choose from, no magazine can cover all subjects. Does a nearly 1 percent autism rate merit special coverage of the topic? What is the responsibility of a parenting magazine to alert new parents to the red flags of developmental delays? If, as one Facebook commenter wrote, “By ignoring autism in your magazine this month, you send a message that families like ours just don’t matter,” how can such a magazine manage to include all parents? Should they try?
Parents magazine Editor-in-Chief Dana Points says that although they have covered autism in their print versions over the past year and have another story about autism in their inventory for an upcoming print issue, they were not aware how much April meant to the autism community.
“There is no other community that I can think of that has responded so forcefully,” she says. “The importance of the month of April is something that is very interesting to me. Might we do something next April? Absolutely. Will be ignore it until then? Heck, no.”
Points says that she knows Parents can’t publish on every topic she would like to, but that, she says, “is the beauty of Facebook and our online community. [Parents] have a voice, and we listen.” She does say she understands that many readers are angry at the magazine and that one of the lessons she has learned from autism parents’ reactions is that having these issues recognized in print matters.
What does the future hold for autism and Parents? Points says that they have already received 50 submissions for their blog series, which will be posted in April. She also said that they are likely to comment on the situation in their June issue, which they are currently working on. “I’ve thought over the past few days that there are things we can do in print,” Points says, “but we might not wait for next April.”
Whether autism parents will be around to read those articles remains to be seen. What is for sure is that these parents want stories about their children in the public domain.
Ethirveerasingam says that she wants people to know that as challenged as her son is, “He matters. His life has meaning and value. When our children with autism are dismissed, it breaks my heart. He has made me stretch and grow in ways I didn’t think I was capable of doing. He has made me a better person.”