Change will come to autism. It’s no longer a question of if but when. And it will be spurred by 3 catalysts initiated on my watch.
The first is MSSNG, our genomics project with Google that is upending the insular world of scientists and researchers. Together with Toronto’s Hospital for Sick Children we are sequencing 10,000 whole genomes from autistic persons and their families in an open science portal. For now, access is free to qualified scientists and researchers encouraged to share their findings. This will unleash new forms of collaboration and discovery to crack the mysteries of autism and other medical conditions. It is a first. And it all came together in less than 2 years. (The full story of this trailblazing project is presented in Chapter 31.) We can say that the future of autism will be dictated by science and biology far more than in the past. With Google bringing order and productivity to a deluge of genomic data, we will reap the benefit of more affordable, more manageable technology.
The second catalyst for change is relying on Google to reorganize and manage our organization’s digital resources into a one-stop portal for autism. Autism Speaks powered by Google will provide WebMD functionality. It is vital for any not-for-profit organization to have timely, accessible information for its online users. This is especially important as Autism Speaks evolves from an advocacy group into an all-around facilitator of proactive resources for families, educators, doctors, and scientists, and big pharma and small business. The process of gathering and disseminating vast amounts of digital information on many topics would require Autism Speaks to make prohibitively expensive software investments every single year. So Google’s assessment of Autism Speaks’ online resources and plan for powering its website are critical. My hope is the project will be completed in 2016. It will be a natural evolution for us and a godsend for anyone autistic.
The third change agent is strengthening Autism Speaks to excel in family services. It requires refocusing the vast field organization responsible for nearly 100 successful annual awareness and fundraising walks on increasing community-based services for autistic people and their families. Making service a cornerstone of our local efforts requires that our volunteers and paid staff work effectively with local, county and state government agencies, education, fire, police, and juvenile and adult services.
These three initiatives comprise my simple bucket list for Autism Speaks.
My goal now is to make sure Autism Speaks is positioned under a new leadership regime to accomplish these 3 major challenges: creating a scientific research portal with Google called MSSNG, becoming more of a comprehensive interactive resource for autism (Autism Speaks powered by Google), and leveraging our grassroots resources to increase services for autistic persons and their families.
The MSSNG genome project in particular came into being just as I was contemplating the next phase in my own life and my tenure as founding CEO of Autism Speaks. Even under the best of circumstances, succession is never an easy thing. But I’ve learned it’s better to shepherd the process as best you can to assure your intentions are preserved. The person I selected to succeed me as CEO of Autism Speaks is Brian Kelly, a decisive, successful real estate developer and father of six whose oldest son is autistic. He is driven by the same passion, sense of responsibility, and visionary control I prized in my own life.
“I don’t know how you and Suzanne do it,” Brian said when we first talked about him taking over. About a year later he told me that after much thought, he was ready for the job. Brian and his family live most of the year in Santa Barbara, where their oldest son, Patrick, attends an autism school. They come home to Massachusetts for the summer. In 2013, Brian and his wife, Patricia, established a postsecondary scholarship fund to support individuals with autism in college, vocational, and other transitional programs in the US. Brian is a hard worker with a Midas touch in business. He is a low-key leader who prefers to keep the spotlight on autistic persons and their families. He has everything needed for this expensive, demanding job. He’s only 53; I am 72. I thought to myself, this is a gift, and I’m going to take it.
Once I transferred the reins of power on May 1, 2015, I discussed my 3 missions with Brian Kelly and others, and the agenda that I had set out for 2015 and beyond. Brian moved quickly to leverage the gains we have made to take Autism Speaks into a new phase that didn’t always feel aligned with my vision. Although the situation was of my own making, it can sometimes be difficult to let go. Brian immediately began reducing the organization’s size and programs. Things became tense when our board and management team failed to rally behind some of Autism Speaks’ highest profile projects including the research science portfolio we had worked so hard to forge. Brian reinitiated discussions with the Simons Foundation about collaborating in our genome sequencing efforts. In October 2015, I raised another $4 million from the Dolan Foundation earmarked to sequence the last of the 10,000 whole genomes and complete the initial phase of MSSNG.
Remaining on the board and executive committee will ensure my continued involvement in MSSNG and Suzanne’s extensive international awareness activities. Preserving all Suzanne and I built, and the advancements we are about to make, is very important to me. I picked the guy. I picked my timing. I’m thrilled to be giving up administrative responsibilities. But by no means am I or Suzanne disappearing.
I have a challenge of my own: to make sure that this new generation is passionate about taking risks. I don’t want them falling asleep on me. I certainly hope MSSNG and the open science it represents will remain part of Autism Speaks for a long time. It all remains to be seen. But the fundamental mission remains the same: moving forward to do everything we can for autistic children and their families.
I am concerned that Suzanne and I have raised so much money for this organization—roughly $100 million—that it will be difficult for them to match that going forward. Angela Geiger’s charge as the new chief executive of Autism Speaks, succeeding Liz Feld, is to help raise special funding and gifts. And if they aren’t able to raise those kinds of funds then there will have to be changes in the Autism Speaks mission statement and plans, which I hope are not too dramatic. Some of that is inevitable. But hopefully they can maintain and support the breadth of our successful activities.
Even though I am no longer in direct control of these three missions I certainly remain supportive of them. So I hope the new leadership of Autism Speaks will look to the past for ways to succeed in the future. We demonstrated how dramatic change is possible by effectively working with individuals, corporations, foundations, and local and national government.
Now MSSNG is thriving under the brilliant direction of Dr. Stephen Scherer at the Hospital of Sick Children in Toronto—in coordination with the province of Toronto, the Canadian government and Autism Speaks Canada, David Glazer and his Google team, and our departing science chief Rob Ring. Others will continue to build on what we have done.
Still, I have been reminded during the transition of power at Autism Speaks that despite your best efforts and intentions, you can’t control other people and events. Your legacy is what you make it. You do the best that you can for an organization, and the future will take its own course.
◆ Brian Kelly. The best way to honor the founders, Bob and Suzanne Wright, is to continue to move the organization forward in a way that it deserves. They will continue to be part of a team of people who do our bidding and deliver our message. That process has already begun—we brought the best strategic minds around a table with a whiteboard and Sharpies to hammer out a new strategic plan. We will continue to build on the strength in awareness and advocacy that we developed in the first decade. We’ve earned a great degree of credibility that allows us to be the convener of various partners we can work with to move our cause forward. So it’s really leveraging everything that we have done in the past decade.
Our ability to convene and create partnerships with private companies, public companies, governmental agencies, and individuals will be key. We’re seeing the power of these partnerships with Google and MSSNG to get researchers and scientists to make autism a primary focus. It’s leveraging what Google and Autism Speaks each brings to the table that is more valuable than money; it is human talent and expertise. It’s a way to lead without directly paying for everything yourself, and that can be really powerful.
These are the areas where we’re going to get the most leverage and return on our mission—the core pillars of which remain family services and science, awareness and advocacy. While our community continues to be underserved, we will be looking for new ways to provide even more resources for families from the time of early intervention and diagnosis through adulthood, because autism is a whole-life commission for most of us. We’ll be looking to do fewer things better and limit our initiatives to what we do best and most need in our community. We’ll be pushing more of our efforts to the local level. We will move swiftly and decisively as things change. This is not about us at Autism Speaks; it’s about the people we serve.
Bob has had a very different way of looking at autism than the rest of us, and that guided the way he approached it and his game plan to attack it. He constantly reminds us that we cannot rest on our laurels because our real, true success will be determined by whether we can provide all families of autistic children the support and attention they deserve. He will not rest until that happens.
It is easy to write a check, but it is another thing to devote your life to a cause. Bob and Suzanne spend the majority of their time on Autism Speaks—often at their own expense. That is a very big, lifelong commitment. That is extraordinary. I think that people lose sight of that sometimes, that this is a very public commitment. There is a lot of pain that we as families are going through with our loved one, and to be public about those struggles is not easy. It defines who you are for that period in your life.
We are trying to be every bit as proactive about this as the Wrights are for the same reasons, starting with commitment and passion. That is how things get done. I do not know what they talked about when they made the decision to completely devote themselves to this cause. But my wife, Tricia, and I know that when you embark on something like this, you are making a decision to take on a really significant challenge and commitment that will dominate your lives and family. It is very hard what we are doing. There are just no easy roads on autism. ◆
◆ Liz Feld. We have demonstrated the most meaningful role Autism Speaks can play is Change Agent. We have changed public perception and public policy; we have compelled change in insurance practices; we have changed the autism research landscape and succeeded in increasing federal research for autism and more.
Now it is time for us to partner beyond the autism community to help the autism community. Many of the challenges we face are not unique to autism: access to care, supports and services, employment, housing, caregiver shortages, safety across the lifespan, too few treatments.
Autism Speaks is uniquely positioned to lead on these issues. We know how to convene, organize and advocate. We have credibility and we can leverage it to drive partnerships between the public and private sectors to find solutions.
Moving forward, the biggest risk for Autism Speaks is trying to do too much. With such vast unmet need, and too few public resources, there is an urge and tendency to cover the entire landscape of challenge and opportunity. The threat of being “all things to all people” looms large. For any business, this is one of the biggest dangers. Local groups should drive local supports and work on areas of local need.
Driving policy change—in health care, education, employment and housing—will help the most people, and Autism Speaks should focus on that. The weight of a massive footprint can keep resources from other places. It happens in business all the time. You end up having to raise money to feed the beast.
“Advocating for better services” and being a “service organization” are two different things. They require different levels of resources and focus. The autism community needs both. As Autism Speaks charts its course for the next decade, choices will need to be made about which path to take. ◆
The drugs commonly used in autism are off label from some other disease or condition. We’re getting closer to encouraging drug companies to develop drugs that can positively reduce the presentation of autism. That’s the goal. They’ve gone through animal testing with a lot of success, and now they’re doing it in human testing. It could possibly restore speech or stop the waving and hand movements and allow somebody to be more typical. That would be huge. That would be a real start.
The biggest breakthrough we’ve had is authenticating Applied Behavioral Analysis (ABA). It’s a relatively rigorous form of therapy, designed to teach an autistic child how to mimic the way a typical child would act in a given situation. So it’s trying to get a child to be more comfortable in a social environment but less comfortable with himself. But it’s a major breakthrough that enabled insurance bill passage, because ABA is a way to treat autism.
I would like to think we could create an autism treatment network of some 40 sites around the country, all heavily financed with a deep community connection. It’s taken 40 years to begin breaking down the different kinds of cancer. There is a trail there we can follow and a process we can learn from. Breaking autism down into hundreds of subtypes is the endgame because the treatment and cure can be much more precise and effective.
Several of our established programs could come into play. The Interactive Autism Network, established in 2006 by Kennedy Krieger Institute and operated out of Johns Hopkins, is an online research exchange among parents of autistic children and assisting professionals overseen by Dr. Paul Lipkin, director. The Autism Treatment Network headed by Dr. James Perrin is a collaboration of some of the best hospitals, medical professionals, and researchers in North America specializing in medical care for autistic children, developing protocols and standards of care. Global Autism Public Health Initiative (GAPH) seeks to improve the quality and reach of autism services in underserved communities worldwide.
In the years to come, the findings from the MSSNG genome project will give us so much more to act on. It will profile diverse forms of autism to identify specific causes, treatments and cures. But until then we must continue to push hard for the same level of resources and attention the government devotes to breast cancer, AIDS, diabetes, and even obesity. In testimony I gave before the House Committee on Oversight & Government Reform on November 29, 2012, I laid out the case for a national autism strategy to accelerate scientific efforts, early diagnosis, development of effective medicines and treatments, support and services for autistic adults, and putting autism on equal footing with other behavioral health treatments for minority groups and our military.
Since then, we worked hard to close some of those gaps while the prevalence of autism worsened. Today, it affects 1 in 68 children and 1 in 42 boys—a 100 percent increase in the past decade. In 2015, the CDC released the results of a comprehensive phone-based study suggesting prevalence has increased to 1 in 50. It has been a reliable precursor to the CDC’s next official release due this spring. During that same time the cost of autism to society has more than tripled to $137 billion. The lifetime cost for caring for an autistic individual in the US ranges from $1.4 million to $2.3 million, depending on the severity of intellectual disability. A new National Health interview survey in mid-November 2015—the first to include more recent data from 2011 to 2014—estimated that 1 in 45 children in the US has an autism spectrum disorder—an alarming increase from the CDC numbers which would not be revised until later in 2016!
And that’s why I say nothing moves fast enough.
◆ Liz Feld. Our success with the passage of the ABLE Act and Autism CARES was the product of building power—or leverage—and knowing how to use it. Now we are fighting for Senate passage of 21st Century Cures Act, already passed by the House. Among other things, it will improve the regulatory environment by bringing in the Federal Drug Administration’s review process in line with advances in medicine and technology. For more people affected by autism these reforms are essential. As MSSNG yields results in our understanding of autism, we will need to translate that knowledge to personalized treatments. 21st Century Cures encourages innovation. It would streamline clinical trials and call for enhancements in patient representation for the autism community and millions of others living with a medical condition. ◆
◆ Dr. Gary Goldstein. Over the next 5 years there will be at least two new courses of action for autism. One is the science: new genes, new pathways, and new potential drug targets being identified. It takes a long time to go from that to some meaningful change for a patient and a drug that really works. But there’s a lot of activity in that realm. And then there’s this recognition that, short of a cure, early intervention in the first 2 years of life makes all the difference.
The second primary focus needs to be on major life transitions as autistic children grow into adults. The first big hurdle will be how the educational and school systems prepare autistic children for transition to independent life. The next big hurdle will be what that is and who will pay for it. ◆
Our biggest, most pressing concern is how to accommodate and support the growing number of autistic adults. Much like the insurance reform we successfully achieved after a decade, self-directed local Autism Speaks chapters and grassroots volunteers need to lobby for local housing and employment in their own backyard. We have empowered them to take on critical matters like this. They don’t always realize how much leverage we have created for them. This is the hardest sell of all, and I believe the way to do this is to get the walks to focus almost entirely now on increasing services in their local communities.
A good model for this is the Coleman Foundation, a private, independent grant-making organization that is a fundraising and support catalyst for its Chicago-area entrepreneurship education, cancer care, and developmental disabilities services.
They raise money and take 25 percent off the top for the umbrella organization, and the rest of it stays local. But the grassroots organization is responsible for all their fundraising, so it’s not a gift. Autism Speaks pays all of our fundraising costs of the walks. So we’re taking 55 percent back but we’re paying all the bills. The Coleman people know every single public and private service that’s available in their communities for women with breast cancer and people with developmental disabilities. They know what the county does, they know where the doctors are, and they’re tight with the American Medical Association. I’d love to see Autism Speaks duplicate this. ◆
◆ Brian Kelly. We can’t be sure of the future, where we will be or how we will feel. We moved from our Boston home to give our autistic son, Patrick, a chance at life in Santa Barbara in a program between UCSB’s Koegel Autism Center and the local public school. They specialize in Pivotal Response Treatment (PRT), a comprehensive intervention method for autism. It has worked out very well for Patrick. That’s why we’ve stayed during the school years the last 10 years. Patrick’s progress has been everything that we hoped for, short of a cure. And so now Patrick’s 18 and we are working on transitioning to semi-independent living. The difference between us and 99.9 percent of America is that we have the resources and the time to figure out ways to support Patrick. That is very rare. It is part of the reason why I spend my time giving back.
Trying to provide opportunities for families who don’t have those resources is what I am focused on the most. Many of them are struggling and it’s very complex. Autism is different for every person and every family. Some people will require constant coverage 365 days a year by a qualified, trained caregiver. The cost is prohibitive. So we will continue to spend time coming up with ways where the state and federal government can help. The requirements can be the same as for people with dementia, those who need a roof overhead and lots of human services.
We can take our successful model of mandatory insurance reimbursement for therapies and replicate it in areas of need such as adult housing and services. We can point to best practices. We can pursue private-public partnerships. We know we have to convene these various stakeholders and develop a broader coalition to come up with areas where we can work together. Bob has provided a pretty good template that we can replicate. But we’ll always benefit from his strategic thinking. ◆
◆ Suzanne Wright. It is different for every autistic person and their parents. Whether it’s the actor Robert De Niro or businesspeople like Harry and Laura Slatkin, or Michelle and Robert Smigel from Saturday Night Live, or Autism Speaks’ communications manager Michael Rosen—every parent of an autistic child pieces things together in their own way. One has his son in a small private home in New York City that cares for a half dozen boys; another founded the New York Center for Autism Charter School and the Center for Autism and the Developing Brain in Westchester, New York State. Bob and I supported the growth of The McCarton School in New York City, where Christian attends. Dr. Cecelia McCarton is an expert in diagnosing and treating children with developmental disorders.
So many parents are afraid to let go for fear that their autistic children will not be as well cared for somewhere else. But transitioning out of the home and into a residential school gives them a running start into adulthood. They are being trained to cope and succeed as an adult with what they have, with dignity and a job. Parents have no idea how much better their children could be. ◆
Timing is critical. One headmaster of a residential school told us that autistic children often come to him too late, at age 16 or 17; he thinks age 13 is ideal. The professionals who run these schools with love and affection are trying to teach life skills the young people will need as adults, to hopefully operate on their own to some degree. I think they are trying to do more under the Affordable Care Act, which provides that mental health now falls under the essential health benefits. The transition process requires at-home and community services and support, most of which do not yet exist. Parents who are by then financially dilapidated and communities that are overstressed have limited means to help.
Providing autistic adults with meaningful work and routines will require support from private companies and individuals, as well as technological solutions. The combination of intensive repetitive work, a consistent daily experience, and supportive technology play to many of their strengths, as companies like PepsiCo, Best Buy, Walgreens, and OfficeMax have already discovered. So we must push for more workplace inclusion.
In mid-2015, Autism Speaks launched the House to Home Prize project aimed at generating ideas for and examples of breakthroughs in housing and residential supports for adults with autism. It backed the effort with $150,000 in prizes. Local town hall meetings and our adult transition tool kit were provided as a base for other new community catalysts.
◆ Harry Slatkin. Many of us with autistic children have learned to empower each other. Today, my wife and I are still on the board of the charter school. We still have New York Center for Autism Care, which we started, and we’re on the board of Autism Speaks, and we have built The Center for Autism and the Developing Brain in Westchester, New York. We decided to do that project because in all these years we started realizing how many crossovers there are in the brain disorder area. And if we can unlock schizophrenia, if we can unlock bipolar, then maybe we can unlock autism, because they all really react to each other in the brain. That might move us to the third chapter—housing for children with autism and the adult population.
That’s the tsunami that’s about to happen when these children age. Where are we putting them? How can we help them have somewhat functional lives going into the community? Can we help them find useful work? We have to leverage everything we have achieved the past 10 years to deal with all that. ◆
◆ Andy Shih. We’re conducting the first-ever US adult prevalence study over 3 or 4 years to determine how many adults in the US are affected by autism, to better understand their needs because very little is known about it.
We can be more effective as advocates and we can create programs that are more targeted to this population. There hasn’t been a lot of emphasis on independence and job training for individual autism. We’re belatedly starting to recognize that it’s a real issue. Other places in the world are better at it. For example, Lima, Peru, where a community is educated about autism and prepares for how they can best train and place autistic adults in jobs where they can be excellent employees. It’s not about charity. They look at people on the autistic spectrum for their strengths at a very early age so that those who can will function as productive, satisfied, independent adults. They invest in training upfront instead of maintenance in perpetuity. Everyone wins.
Here in the US, there’s a lot of resistance to that kind of planning. It’s politics, it’s money, and even resources. Right now the money goes to multiple institutes: Mental Health, Child Health and Human Development, Communication and Hearing Disorders, and the Environment of Health and Sciences. Those are the main institutes that give autism money right now. Now imagine having an institute that is focused on autism. What would that mean to autism? And if we are able to understand the different types of autism, we can have more effective treatment and training. It paves the way for more self-determination and self-advocacy.
For years, Autism Speaks has thrown money at academics and scientists and waited for them to move their research into new areas to get more out of it. So now with the MSSNG project, we’re just going to jump forward with Google as a partner. Autism Speaks has always had a high risk profile. We want to take educated gambles when the potential payoff is immense or even transformational. The implications of what we find out from the research that comes from all this genomic data can change the course of everything, including adult autism.
We are trying to help as many families around the world as much as possible with feasible, sustainable solutions and a policy program level. For me, this is personal. I have told people it’s always been a fantasy of mine that someday—even in the most remote areas of the world—if a parent suspects his or her child is having problems, there would be an easy, sure response. It would be a finger prick, a drop of blood to do an analysis on a portable machine. The data will feedback from the cloud somewhere, render a diagnosis, and then provide a plan of community-based solutions by professionals that can begin right away. The technology is already here. The handheld laboratories, the smartphones and tablet-sized computers, the chips, the social media networks are already in the field. ◆
◆ Harry Slatkin. There are great scientists out there who will eventually find this all out. That’s not really the issue. We do need more government funding; we need to press the government to take it more seriously. But my wife and I, and so many parents, feel we need to help these children now. We have children with autism now. How do we make their lives better for our David and the Wrights’ grandson Christian, both severely autistic? Other parents, like Marilyn and Jim Simons, have a child who is high functioning, but we’re all worried about the future.
I’m worried about the pharmacological side and the pills my son is taking. He’s been on the same heavy psychotic drug now for 8 years—that’s an adult drug being used on a child with autism. There is really nothing out there yet that can be used for David. That has to be something we have to fix in the future.
These children are getting older. Where are they going to be housed? How are they going to be taken care of? Will we always be fighting the insurance companies to make sure there is enough insurance reimbursement so that families can take care of their children when they are diagnosed without losing everything? It is a devastating issue for many, many families. Most cannot afford caregivers, and if they can, they can be hard to find. Two family incomes are reduced to one when one of the parents has to stay home to care for an autistic child, because it is a full-time job and a huge expense. What happens to these kids when the parents are no longer around to take care of them? These questions need answers in the future. These circumstances need to be changed. ◆
◆ Brian Kelly. We are in the infancy of working on this issue of adult transition. It is a huge issue because not only is there a housing component but there is a human services component and just very few options out there for families. Right now, Autism Speaks is doing a survey of everything that is out there in America so we can start a database of all those in a position to help us. It is a very tall order. ◆
In so many ways, NBC GE was a dry run for what we have done at Autism Speaks. We learned supreme organization and management of events and people. We learned how to interface with politicians and businesses. At Autism Speaks we have had to construct and adapt a framework that conforms to and transforms the philanthropic world. We have been beholden to many rigid institutions: science, medicine, academics, government. I have been in a race against time, trying to figure out what I could do to make things better sooner. Had I invested all the money I had, I could not have forced a cause or cure or treatment. I’ve learned that science is on its own course, but I still believe it can be accelerated. MSSNG will do that.
After a year of preparation and 10 years of development, Autism Speaks is moving to another level of growth. That required a significant examination of everything we do, all our staffing, and all our objectives. It was not easy, and there was fallout, but if your goals remain intact, then you constantly have to figure out ways to achieve them. It’s like rock climbing: the first few steps are relatively easy, but pretty soon you’re looking at a rock face that seems almost vertical. You have to stop and rethink your next moves. Where is the next foothold? So much of what you do in life is like that. You often cannot build on your progress without making some changes in your approach. You assume responsibility, you channel your passion, you take control, and you still might fall short of your goal.
I’m hopeful that there is going to be a huge breakthrough in autism. We have already accomplished one important transformation in the way science is conducted with our MSSNG project. If that open science experiment continues to gain speed and results in any kind of treatment or cure for my grandson Christian in my lifetime, I will feel like we have accomplished something very important.
If we can come to grips with what caused it, we may find that Christian is probably one gene off and one pathway off normal, maybe two. We ought to be able to figure out how to reengineer one or two genes. It’s a question of isolating them. And if we could, that could mean giving him a voice or getting some control over his own body. Maybe where science takes us in the future is an earlier diagnosis that would show that a system breakdown is taking place earlier than we think. If we know it’s coming, perhaps we could limit or manage the damage. That’s the challenge. That’s the future.