The following is a conversation between Angela Geiger, President and CEO of Autism Speaks and Denver Frederick, Host of The Business of Giving on AM 970 The Answer in New York City.
Denver: Do you know someone who has an autistic child or grandchild? It seems that many of us do. With the estimates of its prevalence now being 1 in 68 children who is being diagnosed with autism, and when it comes to promoting solutions, helping these individuals and their families and advocating for support, the leading organization in this country is Autism Speaks. It’s pleasure to have with us this evening their president and CEO, Angela Geiger.
Good evening, Angela, and welcome to The Business of Giving!
Angela: Thank you very much.
Autism is really a spectrum disorder… it refers to a range of conditions characterized by challenges with social skills, repetitive behavior, speech, and nonverbal communication.
Denver: Let me begin with this, Angela. What is autism?
Angela: Autism is really a spectrum disorder, and it refers to a range of conditions characterized by challenges with social skills, repetitive behavior, speech, and nonverbal communication.
Denver: Autism is considerably more prevalent among boys than it is girls. Why is that the case?
Angela: We wish we knew. Autism is interesting in that it’s really only been a focus of biomedical research for a short period of time, and significantly, more investments are needed to find out the answers exactly like that.
…parents really should be looking for those developmental milestones that early because early intervention really makes a lifetime of difference.
Denver: What are the early signs of autism that might be a call to a parent that they maybe should have their child looked at?
Angela: One of the real gains that’s been made in autism over the last few years is the proven ability to diagnose as early as 12- to 24 months. So, parents really should be looking for those developmental milestones that early because early intervention really makes a lifetime of difference. Some of those things are no big smiles or warm, joyful expression by six months; no back and forth sharing of sounds or facial expressions; no babbling by 12 months, and anytime that you lose words or verbal ability.
Denver: You said early intervention is really critical?
Angela: It is. Access to those timely interventions as early as possible can really make a lifetime of difference.
Denver: You mentioned a moment ago about the spectrum. I don’t think everybody’s heard about this spectrum as it relates to autism. Give us an idea of range and variation of that.
Angela: It’s really interesting. It was one of the most eye-opening things I learned when I joined Autism Speaks, that the spectrum is truly vast. Some people with autism need very little support and absolutely thrive in daily life, and other people need 24/7 support. They may be nonverbal, self-injurious, and lots of people need emotional support, and intellect makes a big difference in that as well.
Denver: Has there been an increased incidence in autism compared to what it used to be? Or are we just getting better at identifying it and detecting it?
Angela: The answer to that is probably both. There actually is an absolute increase, but we are getting much better at diagnosing and recognizing it.
Denver: Let’s talk a little bit about your organization, Autism Speaks. I know it was founded in 2005. Give us a little bit of the history of the organization and of its founders.
Angela: I think people are surprised to think that Autism Speaks is really only about 12 years old. Bob and Suzanne Wright founded this as grandparents when their grandson was diagnosed. Bob Wright was the former head of NBC. His wife, Suzanne, which is a life force. They came together with three other leading autism organizations that had existed and launched the Blue Pin and what has become Autism Speaks and so recognizable. I think that everybody credits Autism Speaks with the change in awareness and understanding of autism. Certainly, advocacy, research, and then support for families have become a hallmark of that.
Denver: How is the collaboration and the coordination of all the different organizations and players in this particular disorder?
Angela: There are lots and lots of organizations making a real difference in autism, and most of them have been locally. There are lots of local service providers providing that help. Autism Speaks is the only one, however, that’s nationwide and focuses on all those areas.
Denver: One of the significant things that you did when you took your role in 2016 is to lead an effort to refine the mission statement of Autism Speaks.
Why did you think that was important, and how has the mission statement changed?
Angela: When I came onboard, the Board had really made a decision — everything about succession planning and what came next. When Autism Speaks was founded, all these organizations came together, funded all of this research. They thought they were going to find the cure, and they were going home. That’s really what they thought. Instead, what we learned is, it’s not autism. It’s autisms. People need vast support depending on where they are on the spectrum. There’s not going to be a single cure. There’s going to be lots of different treatments and support for people, depending on what their challenges and strengths are.
The Board got to that place and realized the other thing is: We weren’t going home any place, any time soon. We really need to become a sustaining organization. So, that’s why when I got on board and started do strategic planning, we went out and listened. We talked to people with autism, those who care for them, and service providers and researchers; and really looked at the evolution of the space.
That’s why the changes in the mission statement occurred. This move from pure awareness to understanding and acceptance. The world needs to be a more welcoming place for those with autism. The focus on research remained, but it was into causes and better treatments. Also, somebody’s comorbidity issues. People with autism often struggle with anxiety, GI issues, sleep disturbances — things that really have an effect on the daily quality of life. So, focusing on some of those as well. Also, this idea that the advocacy remains really important to that in supporting people every day.
Denver: How has it changed the organization in the terms of the way people respond to it? And getting away from that idea — focusing on a cure — to this whole variety of different things that you put more energy towards?
Angela: By and large, the response has been really quite extraordinary. I think we’re viewed now as a much more accepting organization. People realize that no matter where they are in the spectrum, we’re here for them.
Denver: I think we all know that autism can create a lot of concern and confusion and questions for a family. You tried to assist here through your Autism Response Team. Describe to us what they do and how the team can help in some of the questions that they often get.
Angela: We have a team of trained professionals across the country. You can call 888-AUTISM2 anytime during the week and obviously returning calls as needed and can help you really navigate your journey. The most common reason people call us is: “Where can I find: a dentist, a great school, a doctor who understands?” and all those things. We also have all that work online in a resource finder. They also help with complicated issues like: “My insurance coverage isn’t – I don’t know how to navigate it.” So, help with that. They have state-by-state resources and also understand the laws and the differences in how things happen in different communities.
One of the most exciting things that happened in the last paper is: we’re starting to see some of these mutations or clustering in the pathways, and the pathways become drug targetable… you then can medically treat that ahead of time; that really improves quality of life today.
Denver: it’s a great hotline. It really is. A tremendous service.
Let’s move on to your science for a minute, and one of your ambitious undertakings is the Autism MSSNG Project. It is the largest autism genome project in the world. Share with us the progress and where you hope this eventually leads.
Angela: It is an ambitious project, and it was one that we really… a little bit ahead of its time, to be honest. You’ve got to credit the former leadership for having that foresight. It really is about whole genome sequencing of people with autism and their families, to unlock the mysteries of what are some of these causes. Not all autism has a genetic cause. There is real hope in finding what these mutations are.
One of the most exciting things that happened in the last paper is we’re starting to see some of these mutations or clustering into pathways, and the pathways become drug-targetable. Some of those are targetable with drugs that may already exist. The ability to look at some of those things would really help also the quality of life today. An example is, you know that some of these mutations have issues like increasing your likelihood for seizures. If you know that to be true, you then can medically treat that ahead of time that really improves quality of life today.
Denver: At the end of last year, you issued your strategy plan for science over the course of the next three years. Now, I know it’s impossible to guess where science is going to go and take us. Where do you hope to be in three years?
Angela: I think the biggest role that Autism Speaks can play in science is really looking to get some very specific places to give hope. One of the things that surprised me when I came to Autism Speaks was, certainly, there’s more federal research funding needed for autism. But there actually needs to be more research in the whole autism ecosystem. There needs to be more private philanthropy. There needs to be more corporate investment. Part of what Autism Speaks’ unique role can be is shining a light on that and looking for perhaps progress in small ways that would bring more capital in the marketplace, if you will.
Denver: Let me pick up on what you just said there about federal funding for research. What’s going on at the National Institutes of Health in that regard?
Angela: They have a great new director who has been doing fantastic work in the autism space. I think that they’re really also looking for personal medicine. Because it’s not autism — it’s “autisms” — it’s not going to be one solution, and really figuring out how the best way to make that work go faster.
Denver: I think it’s gone all the way around. It’s personalized medicine, and it’s not just generic. It really is targeting for an individual based on all that DNA and all those other things that come into play.
Autism Speaks provides support across the spectrum, but you also do it throughout a lifespan. One of the more challenging times during that lifespan is the transition to adulthood.
How many teens age out of school-based activities each year? What happens to them? And how do you try to help?
Angela: This was one of the other things, as we were on that listening tour working on our mission statement, was the focus, focus, focus on across the lifespan… that this transition to successful adult outcomes is really important to so many people. In fact, 50,000 a year transitioning into adulthood. And the answer is there aren’t good population level solutions right now. So, that’s why in our five mission objectives, one of the newer focus areas is this transition to adult outcomes. What we’re trying to find is really figure out what the right outcomes are, and then find model programs that help get people there. So, that’s the process we’re in right now and really looking for financially sustainable housing, community living, and of course, employment is a really big issue.
Denver: I think we tend to focus much more on the limitations of those with autism, but there are so many extraordinary skills and capabilities that those individuals have that employers are seeking… like Microsoft. Speak to that a little bit in terms of some of the great jobs and the great work that they can do.
Angela: The thing to keep in mind is — and I think lots of people have a stereotype of one kind of autism in their head, whatever their exposure is. Because the spectrum is so vast, people have really different strengths. At Microsoft, people may be extraordinary coders. Amazon is also working with people who are in their fulfillment centers doing the pick and pack operations. One of the hallmarks we do see is once people with autism get a job that they’re good at, their retention rates and their quality tends to be really off the charts. So, it’s a win-win for employers who are able to really work jobs around people with autism that play to their core strengths.
Denver: I think it also does incredible things for the morale of that organization when they see the employer bring people with autism into work. It just is contagious, and it really lifts everybody up. You’ve also recently launched thespectrumcareers.com. What’s that?
Angela: It’s a job site specifically tailored for employers who are looking to employ people with autism, and for people with autism who are looking for jobs. It offers support beyond your normal job site. People can do visual resumes, and there’s different help in there as well to support people through that job search process.
Denver: Let’s look at your business model. Where do your dollars come from to support this work? And, maybe, what are some of your signature activities that help drive contributions?
Angela: We at Autism Speaks are so grateful for the thousands and thousands of individuals who support us. Virtually all of our money comes from individual people making a choice to donate to Autism Speaks, and we could not be more grateful. Our Walk program is our signature event across the country. It’s our largest single source of revenue. It raises about $18 million to $20 million a year.
Our corporate partners are also some of our absolute closest people, especially during World Autism Month where we have lots of cross-marketing campaigns, whether it’s Gamestop or TJ Maxx, Dollar General — really doing great work to help forward the mission. We’ve also been really successful with some particularly generous, wealthy individuals who are choosing to make an investment in the future of Autism Speaks, some of the things we can change. We really have a strategic plan now that shows real projects we can do that we can take $5 million, $10 million, $25 million gifts and really make a difference.
Denver: Speaking of World Autism Month, it’s coming up pretty soon. It’s going to be in April.
What are some of the things you’re going to do to mark that occasion and draw additional attention to the cause?
Angela: One of the things we’re really excited about for this April is a focus on storytelling. As we’ve already talked about, the spectrum is vast, and the lifetime is long. We’ll be featuring individual stories of people so that you can really learn and get some insight into how autism affects different people differently.
Denver: Let me ask you a little bit about the work culture at Autism Speaks. You’re a relatively new CEO there… having come in 2016. What are some of the things you’ve done to try to change the culture and make it even better than it was?
Angela: Part of this change in becoming a sustaining organization is operating like a startup for a long period of time and realizing we’re going to be here for the long run. So, working on things like system support and all those kind of things that you do. Part of that new mission statement in our strategic plan is, we really want to become a best-in-class nonprofit, and one of those best places to work for employees because we know that the quality of our employees directly impacts the quality of the services we provide, the research we do, the advocacy we’re able to enact. Lots of transparency, strategic planning, business plans and all the ways we can support our staff so that they can support our constituents.
Denver: Let me close with this, Angela. You sort of touched on it already, but Autism is a tough disorder. It certainly can take a toll on the entire family. So, hope for a better tomorrow is so vitally important. As you look over the field, the science, and all the other things that your organization does, what one thing gives you the greatest reason for hope and optimism?
Angela: The greatest thing for hope and optimism is the joy that individuals and families are able to find even in very difficult situations. I’ve witnessed just moments of pure triumph from someone learning a new word or saying “I love you” to their parent for the very first time. I think what Autism Speaks can do to give hope to them is continue unrelentingly on this path of research and support to allow more people to tell their stories.
Denver: That’s a lovely answer, and I think sometimes we just take for granted so much, but those moments of gratitude really hit the core.
Angela Geiger, the President and CEO of Autism Speaks. I want to thank you so much for being here this evening. Share with us your website, the information you provide on it, and how listeners can become engaged and involved and maybe support the organization.
Angela: We warmly invite anyone who has an interest in Autism to join us in lots of different ways. You can go to our website at autismspeaks.org. Again, we’re here to help at 888-AUTISM2. We’d love for you to come out to our walks, fundraise for us, or if you’ve got great ideas and solutions for the future, we’re all ears!
Denver: Do you know when the next walk in the New York area is going to be?
Angela: It will be in September.
Denver: Thanks again, Angela. It was a real pleasure to have you on the program.
Angela: Thank you very much.
The Business of Giving can be heard every Sunday evening between 6:00 p.m. and 7:00 p.m. Eastern on AM 970 The Answer in New York and on iHeartRadio. You can follow us @bizofgive on Twitter, @bizofgive on Instagram and at http://www.facebook.com/BusinessOfGiving