Family Matters

MyAutismTeam: A New Site for Families With Autism

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courtesy MyAutismTeam

In September, Emily Ybarra saw an ad on Facebook for MyAutismTeam, a new site where parents of kids with autism can connect. Because Ybarra has a young son with autism, she clicked and was almost immediately rewarded.

At 4 years old, her son, Cruise, had not yet been to the dentist, and it was weighing on Ybarra. “I had abolutely feared it,” says Ybarra. “He doesn’t like anyone touching him, and he doesn’t like places he’s not used to.”

No sooner had she signed up for MyAutismTeam than she put out a query: did anyone know of a dentist near her Orem, Utah, home who was equipped to clean the teeth of a special-needs child who recoils from human contact?

Within days, she received a recommendation, something she hadn’t been able to nail down in over a year of searching on her own. The dentist, Dr. Barney Olsen, was an hour from home, but the drive was worth it. Cruise was led back to a private room where Olsen patiently explained the components of his exam, bit by bit. When Cruise recoiled at getting his bottom teeth brushed, the staff didn’t flinch. “He had a great time,” says Ybarra, who said Cruise was actually looking forward to his next check-up scheduled for this week. When it comes to visiting the dentist, that’s more than most people can say.

MyAutismTeam, which slipped from beta-dom into official launch mode this week, is more than just a repository of recommendations about local therapists and accommodating Taekwondo studios and barbers; it’s also a social-media destination. But unlike Facebook, it’s intended as a place where parents of children whose developmental trajectory has taken a different turn from most of their peers can feel understood.

MORE: For Siblings of Autistic Kids, Risk Is Far Higher Than Thought

Autism affects 1 in 110 U.S. children, impacting 13 million families. Although it’s garnered its share of research and attention, many parents still feel bewildered when it comes to tracking down resources and services for their kids. The vast majority of registered parents — 85% — are moms. They often find that their Facebook friends can’t relate when it comes to autism. Most of Ybarra’s Facebook friends, for example, don’t have children with autism. “When you want to share something really awesome or really hard, no one is going through that,” says Ybarra. “The great thing about MyAutismTeam is that everyone has been there. You don’t feel like you are being judged.”

MyAutismTeam is the brainchild of Eric Peacock, a tech excutive whose nephew was diagnosed with Asperger’s syndrome, a form of autism, seven years ago. Peacock watched his brother and his wife struggle to find the right resources for their son. They scrambled from place to place on the Internet, unable to find a central clearinghouse. “It was like reinventing the wheel,” says Peacock, who had been running Insider Pages, a business and restaurant review site reminiscent of Yelp. That gave him the idea to combine the crowdsourcing recommendations of Yelp with the social aspects of Facebook, all targeted to the autism community.

MyAutismTeam began quietly in June with 30 San Francisco Bay parents; by Tuesday, membership had climbed to more than 12,500. Members create a “team” by sharing their child’s providers. With help from autism advocacy organization Autism Speaks, MyAutismTeam has compiled a directory of more than 30,000 providers — everyone from physicians to babysitters to piano teachers.

“Our mission is simple,” says Peacock. “When you or a loved one are diagnosed with autism, it should be easy to find the best people around to help you. You should be able to find other parents who’ve been in your shoes.”

In the six months since MyAutismTeam came online, it’s already evolved to meet the needs of its members, up to 30% of whom visit the site daily. “We originally launched this as a way to share providers,” says Peacock. “But what keeps people coming back is finding emotional support from a community that won’t judge them.”

MORE: Study: Autistic Children Have More Brain Cells

Members share candidly about their experiences, fretting about marriages strained because of children with special needs and the exhaustion that comes with parenting such kids. One exulted over her child’s meal:

“My son just ate 3 pieces of cooked carrots, and a half cup of corn, and rice with shredded carrot! I can’t believe it and I am THRILLED! If you know autism, you know eating issues. hooray for small victories”

Another described the toll her son’s tantrums were taking:

“…Head butting, climbing out of car seat, trying to hang upside down on a rope…, tantrums that are lasting for over an hour, stripping, wetting clothes, getting into EVERYTHING…. You name it, he’s tried it today…On top of that, we had a block party last night, and a neighbor I had never met was laughing at my child. If he were typical (and maybe the man thought he was), it may have been a little irritating…But instead it made me cry and go home early. I just couldn’t take being that different from everyone else. Ugh….Maybe tomorrow will be better.”

And one encapsulated the raison d’etre behind MyAutismTeam, writing:

“I went to a new counselor today… and she asked about my support group, like family or friends, and I listed this group :). You guys are all I could think of at the time :).”

Bonnie Rochman is a reporter at TIME. Find her on Twitter at @brochman. You can also continue the discussion on TIME‘s Facebook page and on Twitter at @TIME.

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