The social network for parents of kids with autism

In March, we reached a special milestone: over 20,000 U.S. parents have signed up for MyAutismTeam. This phenomenal growth is a testament to the vibrant and accepting community each of you, as parents with kids on the spectrum, has shaped on MyAutismTeam.

MyAutismTeam’s social network for parents of children with autism has taken off in the U.S., and is debuting in Canada today. Canadian parents are invited to join the site to start connecting with other parents.

Also, autism providers and specialists in Canada (private and public organizations) can list themselves within the MyAutismTeam directory for free. Because it is still relatively early, we do not have any listings of Canadian providers on the site. We’ll look to parents who join to add their own service providers, schools and doctors to their team. Our hope is to have over 3,000 autism providers listed on MyAutismTeam by the fall of 2012. We think we can do it with your help. When we lauched MyAutismTeam in the U.S., we started with 12,000 autism specialists & businesses provided by Autism Speaks. Today with the help of thousands of parents in the United States, we have 30,000 autism providers! So if you’ve found a barber who gets it, or an IBI therapist who works wonders with your child, add them to your team on MyAutismTeam.

Just how different are the challenges parents face in Canada compared to the U.S.? 

Stuart Duncan, autism father, blogger, and author of Autism Understanding and Acceptance, made this observation,

“…it seems a lot more complicated in the US simply due to the separation of the states. For example, one state may have the schools making the diagnosis where other states may have neurologists doing it and then others go to their pediatricians. Getting the diagnosis is only the first step. How can things be so different? And then there’s the insurance issues. Each state has to pass their own law, each insurance company

Stuart's family: sons Tyler & Cameron, and wife Natalie

Stuart's family: sons Tyler & Cameron, and wife Natalie

has to set up their own rules and guidelines and loopholes. It’s a mess.

In Canada, you go to your pediatrician for a diagnosis and health insurance is pretty much a governmental thing. There’s not much variety in how you do things.

There are pros and cons though. In the US, either you pay or you’re covered; either way, you get the service. In Canada, if you pay, you get the service, if you’re covered, you wait. Depending on which service you’re trying to get, the wait times vary. For us, we had to wait 3 months to get speech therapy and had to wait over 3 years to get IBI [Intensive Behavioral Intervention, or IBI, is exactly the same as ABA except that the child participates in an intensive number of hours of therapy per week, usually more than twenty.]“

Other parents agree on the challenges in getting a diagnosis. Niv Jameson, mother of a 19-year-old teen, says this about the challenges she faces with waiting for a diagnosis:

“[U.S. parents] have more services available and earlier diagnosis. By the time my son was diagnosed, we had missed a huge window of opportunity for intervention.”

To avoid the common scenario of years-long waitlists, Marishel Santo Domingo, mom of a young child diagnosed with ASD took the private route:

“Our family chose to get a diagnosis done privately after over a year on a waitlist, at the cost of $2000+. After finally getting the diagnosis we were put on another waitlist to receive IBI therapy, which came about 18 months later. For the year and half we didn’t have funding, we had to pay out of pocket for therapy at the rate of $40 per hour, which was a huge financial strain on our family.

Something that is common among U.S. and Canadian parents: teams.

It takes a team to support the well-being of children on the spectrum no matter where you are. Canadian parents we spoke to had a range of support depending on how much the government insurance covered and affordability.

Stuart Duncan’s son’s team includes: “Cameron’s teacher and EA (educational assistant) at school, a therapist, and us.”

Niv Jameson’s team includes: “Naturopath, chiropractor, allergist, pediatrician, crainial sacral therapist, speech pathologist, art therapist, riding instructor, one on one student aides, and martial arts instructor.”

Amanda Holleuger’s team for her 23-month-old includes: “Kerry’s Place Autism Service, pediatrician, and dietician.”

Marishel and her kidsMarishel Santo Domingo explains how she went about shaping up her team this way:

“Diagnosis was the hardest part for us. Being a first time mom at the time I didn’t know the signs, and it didn’t occur to me that my son had autism until he was 2-1/2. Our doctor was very ‘wait and see’ and didn’t properly help us find any resources. I had to do all the research — calling different agencies on my own in order to get him diagnosed. Then, I sent him to every doctor I could think of: a homeopath, naturopath, chiropractor, neurologist, osteopath, psychologist… all in search of some treatment, though nothing really worked. The only effective treatment was IBI therapy, which he didn’t start until he was almost four.  Most of these treatments we paid for out of pocket. To get him into a Special Kindergarten program we had to register him with our home school, and then request a meeting with the principal and the special needs consultant of the school district. Next, we entered into a review process in order to identify my son’s needs and where he would be best placed in the upcoming school year. He ended up in a Diagnostic Kindergarten program, which was a smaller class with support from Occupational and Speech therapists provided by the school. We were happy with this decision.”

Of course, as we’ve learned at MyAutismTeam, a team is made up of more than autism specialists, schools and providers. Teams are made up of parents, too, that provide emotional support in a safe, judgment-free environment. Executive Director of Autism Speaks Canada, Suzanne Lanthier, said

“Autism is a very isolating condition – from families living in large urban centres to those based in small rural settings. It is often very hard to connect with others regularly, or face to face. Many volunteer parent-run support groups are in place across Canada, but we’ve certainly seen the use of on-line chat groups, Facebook and Social Media where parents get a lot of support. When you see a parent having a particularly tough ‘autism day’, the support from parents around the world saying things like “we get it”, “I hear you”, “sending you hugs and understanding” – that goes a long way to having parents feel less alone, more united and empowered to keep on with the fight.”

Stuart Duncan was one of the first parents who asked MyAutismTeam to expand to Canada. And we’re glad he did. Families of an estimated 190,000 children diagnosed with ASD are in Canada. Regarding the types of support she looks for, Amanda Hollueger said, “I go to as many training programs as I can, and talk to other parents there as well as online on sites like [MyAutismTeam].

Parents of Canada, we can’t wait for you to join us on MyAutismTeam. We understand you. We get it. Lots of hugs and understanding are waiting to be shared. Find and connect with parents like you throughout North America, or those in your city or province, and even those who have kids similar to your own. We have an easy to use “Find Parents” feature that enables you to find parents geographically near you, or by matching the diagnosis and age-group of your child.

Hope to see you on MyAutismTeam, soon!

Keep the feedback coming! Every day we help each other make the site better for parents within the MyAutismTeam community from the U.S. to Canada.

 Written by Mary Ray, CMO/ Co-founder at MyAutismTeam

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