The Voices of Autism: How Families and Providers are Working Together

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This Patient Power program illustrates how providers, families, patients, and the greater community are coming together to address autism. How does an autism diagnosis affect a family? What is the benefit of being part of a community when seeking treatment? Beyond knowing you're not alone, being part of a community in a broad sense allows you to gain new knowledge. Linking with others for care, support and research is essential.

Featured in this program are several guests: Gary Stobbe, M.D., a neurologist specializing in autism and Medical Director and Founder of the Autism Spectrum Treatment and Research Center (ASTAR); Lauri Perry, mother of 9-year-old Clark who has autism; And Brenne Schario, mother of two children with autism and Executive Director at Families for Effective Autism Treatment (FEAT) of Washington.

It is through sharing stories that people can connect in a community – this is what Trusera does. Their new "One Video" Series offers powerful stories from those who have ‘been there.’ Lauri Perry is featured there along with many others. You can seek comfort in their words or join the discussion and offer your own words to comfort others.

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Produced in association with Trusera and Autism Spectrum Treatment and Research Center

Transcript

Andrew Schorr:

Hello, and welcome to Patient Power. I’m Andrew Schorr, and this is where we bring people together to discuss a serious health concern, and my experience has been that when there is a serious concern it doesn’t affect just an individual, it affects a whole family, maybe even several people around that family, and if it involves a child it may affect grandparents and friends and teachers and peers, a wide group. Of course that can go on sometimes for a lifetime.

Well one of the things that I know so much is that there is information that can be shared among people affected, and that can be independent of what you hear at the doctor’s office or at the therapist’s office and that that information can be so valuable as well. What has another person or family’s journey been, and have they walked in those shoes ahead of you?

Well there are other organizations building communities that believe that too, and one of them, also based in Seattle as Patient Power is, is Trusera and www.trusera.com, and we’re delighted that they’ve worked together with us so that we can have a discussion about the benefits of community when it comes to families touched by autism. As you’ll hear in a minute it’s not just about the mom or the dad or the child who is affected by it, but it’s also making the community larger including the researchers and the various healthcare providers and other stakeholders as well, all working together to provide support through communication.

Andrew Schorr:

So I’d like you to meet a few people. First of all I’d like you to meet Lauri Perry. Lauri has a child who was diagnosed with autism, Clark. Lauri, tell us how old was Clark when he was diagnosed?

Lauri:

Well he was diagnosed the first time by a private neuropsychologist in Seattle at the age of four.

Andrew Schorr:

That’s late isn’t it?

Lauri:

It is late, especially when we started seeing signs of something going wrong probably when he was about three years and four months, right before my second child was born.

Andrew Schorr:

Now we should mention that Clark is 10 now, or almost 10, so it’s been quite a journey, and we are going to hear about that in a minute because you’ve had the lows and I would say maybe some of the highs of making progress and also connecting with others, and we’re going to talk about that. Also with us is Brenne Schario. Now Brenne you have two children, Nathan 17 now and Joshua 16, who have been diagnosed with autism. When did that happen?

Brenne:

Nate was diagnosed when he was 2 years, 11 months, almost 14 years ago, well a little over 14 years ago, and then Joshua a year after, when he was 3 years old.

Andrew Schorr:

Wow, okay. Now the good story there too is that you are Executive Director of an organization in Washington State called Families for Effective Autism Treatment (FEAT), and I know there are others in other states, but I understand this is like the largest and so you’ve been extremely proactive as well, and I think you’d both agree that it really is powered by a relationship with other, I use the word stakeholders, but other parties where they may not have autism in their family, but they’re helping people with it every day, and so I’d like to also bring to the discussion Dr. Gary Stobbe who is medical director and founder of a group that helps specialize in autism, the ASTAR Center, Autism Spectrum Treatment and Research Center. Gary is a neurologist. Gary thank you for joining us.

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