What Inroads are Being Made in the Field of Autism?
Mar 31, 2016 10:27AM ● Published by Hilary Daninhirsch
April is National Autism Awareness Month, and April 2 is Autism Awareness Day. Brett Spitale, the executive director for the western Pennsylvania chapter of Autism Speaks, talks about what’s new in autism research and awareness.
North Hills Monthly: What is the mission of Autism Speaks?
Brett Spitale: Our primary goal is to fund research; we want to make sure that we are funding the sharpest minds across the U.S., Canada, and internationally. We provide family services in the form of different types of toolkits; for example, ‘How do I take my child to have blood drawn,’ get a haircut, etc. We provide an autism response team, which is a number someone can call 24/7 with someone on the other end of the line that can help them if they’re looking for resources. We also advocate on behalf of our families so that they don’t have to storm Capitol Hill about insurance reform, the ABLE Act, and awareness, which is a big key. People can’t support the organization if they are not aware of us.
NHM: Do you believe that people are becoming more aware about autism?
Spitale: I do—before we were here, when people received a diagnosis of autism, there wasn’t an organization that was there to say, ‘Hey, we can help you out, we can connect you with families who have dealt with the same thing.’ We are open about who we are and what we do, and we want to make sure that the message is getting out there that people are living with autism on a daily basis.
NHM: What are some ways in which Autism Speaks raises awareness?
Spitale: We’re out on the frontlines every day trying everything that we can. We have different partnerships in the community with some of the larger employers. It is key for us to be able to build some great relationships with leaders in the Greater Pittsburgh area. We have a very large walk for Autism Speaks on June 12; that is a huge awareness raiser for us. It builds awareness with school systems, service providers, doctors, dentists…where we know our families are going to be touched.
NHM: What exactly is autism—is there a general definition that incorporates those on the spectrum?
Spitale: It’s tough to define. The saying in the industry might be, ‘If you’ve met one person with autism, then you’ve met one person with autism.’ It truly is a spectrum. It goes from someone who may be on the higher functioning side, who is mainstreamed in school with maybe some social issues to deal with, to someone who is nonverbal; they can’t use the restroom themselves, and they need care 24/7. It’s hard to narrow down a definition, but there are a couple of areas on our website that explain the technical definition.
NHM: What are the latest statistics concerning autism?
Spitale: Over the last 10 years, we have seen the prevalence rise. We believe it’s a combination of a couple of different things—our diagnostic tools are better, and we can diagnose at earlier ages. The earlier you can diagnose, the earlier you can intervene with services. We are also seeing a larger prevalence of autism in boys than girls: autism affects one in 68 children—one in 42 boys, one in 189 girls.
NHM: What about screening tools?
Spitale: There is no medical test that can diagnose autism, but we have doctors and psychiatrists who can administer autism-specific behavioral evaluations. If a parent really suspects something, we can now diagnose earlier than 2 years old. Science has proven the earlier we can intervene with services, the better off the child will be down the road. Parents are the first ones to notice autistic behaviors; that is why it is so important for them to be educated.
NHM: What types of treatment options are available?
Spitale: Each adult or child is unique, and an intervention plan is tailored to address specific needs around that individual and where they fall on the spectrum. Intervention can involve behavioral treatment or medications. Some people also have additional medical conditions like seizures, gastrointestinal (GI) issues and sleep disturbances that can mask what is going on with autism, so it is important to address these different medical issues.
NHM: How do schools manage children who are on the spectrum?
Spitale: We have a lot of toolkits on our website that schools can download for free. Most kids on the spectrum have a specialized educational plan. It’s extremely important for schools to work closely with families so that they make sure they have different key educational pieces in place so that students can excel in the program.
NHM: What types of services exist for both children and adults with autism in our region?
Spitale: We’ve got some great resource providers out there. Autism Speaks doesn’t provide services directly for our families, but we can point them in the right direction. We see it as our job and mission to be able to connect them.
NHM: What’s new in autism research?
Spitale: There is a lot happening right here in our backyard at UPMC and the University of Pittsburgh. It’s incredible, some of the programs that are being funded. We have the MSSNG Project. We are working with Google and other researchers to map a genome of 10K on the spectrum. In the past, researchers weren’t connecting with each other, though this allows a giant pool for mapping genomes. We’ve already mapped 6,500 genomes. It’s been really neat to bring that research together.
NHM: What is the outlook today for a child with autism, and do you have hope for the future?
Spitale: I think it is very positive— I think that my answer would have been different 10 or 15 years ago. Between children getting early diagnoses and getting services that they need at an early age, we hear success stories. If you get that diagnosis early and are extremely vigilant to make sure that you get intervention, the outlook is very good. Our goal is to hopefully put me out of a job—that we find that cure.
For more information, visit www.autismspeaks.org.