Part I on a series of articles about Autism Speaks
by Debra Muzikar
Autism Speaks, the biggest non-profit for autism is celebrating their 10-year anniversary. Many people, including entire towns, Light it Up Blue because of Autism Speaks. They have over 1.5 million Facebook fans. I can’t let April (Autism Awareness Month) go by without writing a blog about Autism Speaks. In fact, as I compile information it’s more than one blog. This is the first in a series of blogs.
The Autism Speaks Resource Directory and Autism Response Team (ART)
One of Autism Speaks claim to fame is their National Resource Directory and their Autism Response Team (ART). From their website “The Autism Response Team (ART) is a group of eight Autism Speaks staff members dedicated to connecting individuals with autism, their families and all other members of the autism community to information, tools and resources.”
As part of my research, I visit the Autism Speaks website and dial the phone number for the Autism Response Team (ART). The first time I call is Monday afternoon. I listen to an answering machine which says they are open for calls from 9:00 AM – 1:00 PM Monday through Friday. I can leave a message and they will return my call. I don’t leave a message and decide to call them during normal hours. I don’t know if between 9 AM and 1 PM is PST or EST but I assume it is EST which means I need to contact them between 6:00 AM and 10:00 AM PST. The website says between 9 AM – 1 PM local time. They don’t specify the time zone. So I call them back at 7:40 AM PST on Tuesday thinking I’d get to talk to a real-live person. Again, I get an answering machine and leave a message. I don’t hear back from them after a couple hours and decide to call them back again. I click on 5 for adults services. The phone rings 5 times and I hear a message “There is no one available to take your call.” This time it doesn’t allow me to leave a message.
Okay, so I’m not getting any help from Autism Speaks over the phone. I click on the online Resource Directory and go to Adult Services: Day programs. I enter my zip code – 92028. Up pops a list of 5 adult services with 25 miles. None are in Fallbrook where I live. I do know there is an adult day program in Fallbrook, so I guess the Autism Speaks online resource guide is not comprehensive. The closest day program on the Autism Speaks resource guide is listed as CARD in Temecula, 8 miles away. Really? Does CARD (Center for Autism and Related Disorders), an ABA provider, have a day program for adults in Temecula? I decide to call them and ask. I dial the first number for CARD Temecula on the Autism Speaks website and hear a message from the Operator “This line has been disconnected”.
Kevin may need a job. I go to the Employment Services tab on The Autism Speaks website. I know there are some programs in Fallbrook who employ people who are autistic. I see autistic people working at the local thrift store and have talked to the agency.
So again I enter my zip code – 92028. There are no employment services for autism in that zip code. The closest is listed in Temecula – CARD again. Really? Does CARD provide employment services for Autistic people?
I decide to call the Woodland Hills Office for CARD (the 2nd number listed on the Autism Speaks website as the first number has been disconnected).
“I’m interested in the day program you have in Temecula,” I say.
“I don’t know what that means. We provide 1-on-1 ABA services.”
“Do you provide employment for Autistic people?”
“No, we are a behavioral intervention service and provide 1-on-1 ABA services for autistic people.”
“Thank you,” I say and hang up the phone. This is getting to be a little frustrating.
Kevin may need a doctor in Fallbrook. I go to the Autism Speaks Resource Guide under Health and Dental Services and again type in my zip code 92028 and click within a 25-mile radius.
The only thing that pops up is an optometrist 15 miles away in Oceanside. Okay, Autism Speaks is no help in finding a physician for Kevin in Fallbrook.
So Kevin may want to take some college classes. I go to the tab marked “Post-Secondary Education,” and again put in my zip code 92028 and click within 25 miles.
The first thing on the list of two is Mountain Shadows Support Group in San Marcos. I’ve never heard of them so I click on their website. Oh, this is a day program in San Marcos (16 miles away) for people with developmental disabilities. Mountain Shadows also provides after-school programming for children/adolescents diagnosed with ASD. Okay, that’s kinda cool but not what I was looking for as far as post-secondary education for Kevin.
Kevin may need transportation. Under the transportation tab I enter 92028 and the only thing that comes up is again Mountain Shadows Support Group in San Marcos. Okay, no help with transportation on the Autism Speaks website.
How about Residential Services? Bingo! I get Mountain Shadows Support Group in San Marcos and TERI in Oceanside. Okay, one out of five isn’t so bad? Or is it?
I guess the Resource Guide on the Autism Speaks website is not accurate, not kept up-to-date, and not comprehensive. A well known phrase in the computer industry about databases – garbage in, garbage out.
I’ve wasted my entire morning. I’m still waiting for that return phone call from Autism Speaks Autism Response Team (ART). I’ll just call it the Failed Autism Response Team (FART). Good thing this is Autism Awareness Month. I’m now aware that the Autism Speaks Resource Directory is a waste of time.
I did download a transition assessment for autistic people from their website. I don’t really need an assessment though to know what Kevin’s challenges are. I also see they have a brochure which lists big companies who support autistic people in employment. That’s interesting to me. Walgreens is on that list. They are employing Kevin in his transition program. I didn’t see Autism Speaks on the list of big company employers of autistic people. I guess they didn’t buy into that initiative.
It’s now 12:30 PM PST. I receive a return phone call from Autism Speaks. The person on the other line says she is responsible for adult services for the entire United States plus she is responsible for some calls involving resources. “That must be a difficult job,” I say. “To be in charge of adult resources for the entire United States.”
She tells me she is out of New Jersey so they are on Eastern Time. When I ask about services in Fallbrook, she says all services in California are funded by the Regional Center, which I was already aware. Unless you aren’t a Regional Center client, which many people with Aspergers are not. She gives me a number for the Department of Rehabilitation for employment. When I ask about housing she says “Housing is a problem in California because there are long waiting lists. You need to talk to the ARC.” She gives me a number for the ARC. We didn’t have any wait time to get Kevin into a home when he moved from Ohio (but maybe our situation is unique???). When I ask about physicians, she replies “that’s hard. There’s no one listed in your area.” She informs me that the Los Angeles Autism Speaks Office has a coordinator who knows about California, “but only for children’s services” she says.
So I guess the Autism Response Team (ART) is not really a team of people, but 1 or 2 people who seem a little overwhelmed with their task. Autism Speaks raises $64 million a year (2013 990). You think they would fund more people for the phones.
So was this conversation helpful? Not really.
Am I surprised? Not really.
So how do I find out about resources in my local community? I usually do the old-fashioned thing. I call friends and do Google searches.
It just so happens that Veronica Banchs of BlueCrayonz emailed The Art of Autism about a new nonprofit she has created to connect people in the autism community with resources. She was inspired by the lack of response from Autism Speaks to services in her local community. Based in Fort Meyers, Florida, Blue Crayonz offers a personal search for services. Veronica says she recently helped a mom from California find dance classes for her daughter on the autism spectrum. She was able to call around and locate a dance class for this woman’s daughter. Veronica, the parent of a 12-year old on the autism spectrum, is trying to fill a gap that is lacking in the autism community. She is currently fundraising for a sensory room for autistic children and seeking art for a fundraiser.
Future Art of Autism blogs will look at Autism Speaks financials and talk to people in the autism community about how they feel about Autism Speaks.