Q & A with The Concert 4 Autism Co-Founder

The Concert 4 Autism is a unique live music events program designed to raise awareness and funds to help those families and individuals with Autism. A conversation with the Concert 4 Autism co-founder one Concert and Two Heart attacks later. As I found out some things change and some things never will.

Q: After two heart attacks separated by only seven weeks the obvious question is how are you feeling?
A: I’m feeling better some days compared to others, but that is to be expected I’m told. I’d say at this point I am cautiously optimistic, but realize my life certainly has changed on many levels…It’s coming to grips with and accepting it that I could do a better job with.

Q: What has been the hardest part of the heart attack ordeal for you?
A: Other than the physical heart attacks, getting shocked with a defibrillator and the uncertainty the situation brings, it has to be the lowering of expectations. I’m not even 40 yet and I’ve been to the place you don’t want to be…twice. I had to face a reality of what if today was my last day? What about my wife, my son and so many things left unfinished. What if these are my final moments? It is a frightening and life altering experience, and at the time you can only hope to survive. I consider myself lucky to be alive… and I don’t plan on wasting whatever time I have ahead of me by looking backwards. I’ve been told I came back because of “Unfinished Business” but I don’t take things for granted anymore that’s for sure.

Q: What did you learn from the first concert and how will that impact events moving forward?
A: The initial concert was both an amazing performance and an equally amazing learning experience at the same time. We had some great people involved and the venue, sound and bands were awesome. We could not have been more pleased with that aspect. The live stream was something we did not know what to expect. It turned out to be the most exciting and unexpected aspect of the concert. It was obvious just from the numbers we were on to something…but what was the question. Letters and emails poured in from all around across the country from California to New York and points in between thanking us for the experience of a live music event for Autism online for the first time. We came to realize we had scratched the surface of something more than just another concert. We agreed a few changes needed to be made in order to begin tapping into this enormous potential moving forward.

Q: How does the Concert 4 Autism differ from other charity concerts?
A: The Concert 4 Autism Distinguishes itself in three fundamental ways.
1. We are real people not some faceless corporation or heartless promoters. I have heart disease, my wife is a type I diabetic and our son has Autism. We are inspired by our real life events that changed our lives and continue to drive us to want to help as many others experience the power of music. Who we are is what enables us to work more closely with our artists, bands and sponsors while we connect with our audiences and our cause in ways that other events, promoters and for profit agencies simply cannot.

2. Online and On Demand deliveries enable us to reach audiences around the world and those isolated by the impacts of Autism at the same time. Many of these individuals otherwise would never get to experience a live music event. It also gives us the opportunity to create intimate events in great locations to further enhance the over-all experience for both onsite and online audiences. It's an opportunity for the bands to make a difference and reach audiences while they do it too. We continue to enhance our video packages and awareness components and combine them with reach of the Internet to educate the largest numbers and connect them with our cause. We are talking about a plethora of untapped interactive opportunities for those isolated by autism... what we are doing is probably just the tip of the iceberg when you consider the influence of online communities like facebook and twitter. What's better than opening the doors of a place someone thought they would never get to go and helping them experience some things they never before thought they would.

3. The Concert4Autism events giveback to local, regional and other charitable organizations that provide direct and immediate assistance to those with Autism Spectrum Disorders. Our approach is certainly different. We believe everyone counts. No one is right, No one is wrong, each of us is an individual with different needs. We celebrate individuality. Significant progress has been made in fundraising for research, yet very little is being done to help those struggling to live with ASDs. As the parents of a child on the Spectrum we have first hand experience with the desperate need for increasing awareness, resources and accessibility to create the most positive outcomes for people with Autism. That's what we will change with your help.

Q: What challenges do the concert events face moving forward?
A: There are always challenges, good thing we have a lot of experience improvising, adapting and overcoming all kinds of them. Weather, Band Schedules, Venues, Travel, Gear…almost anything can become a challenge. All you can do is prepare as best you can. The key is cooperation…getting everyone onboard to get behind the cause. It sounds simple enough, but in reality there are always those who are more interested in making a profit off of charity events than being charitable. We do our best to work with those businesses and individuals whose hearts are in the right place to ensure the maximum benefit to our charitable partners and cause.

Q: Do you have a preference to one style of music or destination?
A: Not really. Every show is different. It comes down to who wants to get involved and putting the logistics together to make a concert happen. If it’s a country band, rapper, rock bands, classical ensembles or other type of performer really is about their willingness to participate in an individual event. Exploring different types of events including online and on demand creates a variety of opportunities for the artists to contribute to our cause its efforts on terms more accommodating to their schedules, management, etc. The internet really gives us a wealth of opportunities to reach music fans and isolated populations while we give bands and performers of all types and sizes the ability to contribute in ways they find comfortable and appropriate. It’s really a win…win situation for those looking to make a difference in the lives of children and families living with Autism.

Q: Is it true that your seven year-old son with Autism has some influence over the music selections?
A: Yes it is. As you know it was music in the car that started it all on a ride home from The Children’s Hospital in Denver. Since then we have exposed little buddy to all kinds of music. He is not shy about telling you what he likes. He’s honesty is pure. No political correctness at all… we love it. If he likes a song he’ll tell you and put it on repeat. And if he doesn’t like it he’ll tell you that and ask you to change it. I’ll never forget the look on his face when saw The Freddy Jones Band…he still bangs on the trash cans over a year later saying “I’m want to be a drummer like Simon”. Music is certainly magical and can be nothing short of a miracle.

Q: What bands and kinds of music does he like?
A: He has quite a diverse taste…but really likes rock n roll the best. Sometimes it can be a song in a movie or tv show that he connects with too. So we have really become much more in tune with all the music around us. He really enjoys a lot of rock bands including Jupiter Coyote, Freddy Jones Band, Big Head Todd, Nickelback, Bon Jovi, Bad Company and the Scorpions among others. He does like a variety of country artists including John Rich, Alan Jackson, Taylor Swift, Jason Aldean, Leanne Rimes and others. It really is cool when he enjoys some of the same music and artists that we do as parents. It gives us something to share in common which can be difficult for those with ASDs.

Q: What’s next for the Concert 4 Autism?
A: We look forward to coming events and further integrating online deliveries to reach the largest and most diverse audiences. At the same time we are excited about bringing some great live music experiences to our audiences from intimate venues, while elevating Autism Awareness and raising funds to make a real difference doing it. We are already exploring new artists, sponsors, locations, charities and venues. One of the greatest things is the dedicated and compassionate people we meet along the way. The one thing that will never change is our desire to continue connecting people and professionals with information and one another empowering them through the power of music.

Ten Commandments for Parents of Kids with Autism & Special Needs

These commandments have been floating around the internet in one form or another in various places for a while now, but we felt they spoke to the essence of what parents of children on the spectrum need be reminded from time to time. All of us deal with hope and heartbreak, recovery and regression and lose sight of these valuable principles as a result of things sometimes. Some parents print them out and post them as a reminder to themselves as to what is really important. Others bookmark them and revisit them when they need the comfort of their ideals. To each his own. Feel free to share them, save them, link to them, or encourage others to remember what is truly important in our lives one day at a time…all our children deserve nothing less.

1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.

2. Never underestimate your child's potential. Allow them, encourage them, expect them to develop to the best of his abilities.

3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.

6. Answer only to your conscience: then you'll be able to answer to your child.
You need not justify your actions to your friends or the public.

7. Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.

8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Autism is the fastest growing disability on the planet according to the Centers for Disease Control. More children will be diagnosed with Autism this year than with pediatric cancers, AIDS and Diabetes combined. This means more parents and families will be looking for the same encouragement, assistance and answers that we are. Embrace them, Share with them, Support them in anyway and everyway as we ourselves would want to be treated. Regardless if you’re loved one with Autism is 18 months old or 81 years young we are all on the spectrum and deserve to be treated with respect and dignity. Gandhi said: “The truest reflection of any society is how it treats its most vulnerable citizens”. By treating others in our cause they way we ourselves want to be treated we set forth an example to inspire the willing and compassionate members of society. Compassion begins with Awareness, but must inspire Action if we are ultimately to make a difference for those living with Autism Spectrum Disorders today.

Research or Relief

RESEARCH or RELIEF?
Autism is the fastest growing disability worldwide according to the Center for Disease Control. The UN reported that over 35 million people around the globe had Autism in 2007. To date research has been unable to find a cause or cure. Millions of dollars are pouring into more research even amidst the ongoing controversy over vaccine research and scandals, including $212 million from the Obama Administration. According to a recent article by Jenny McCarthy in the Huffington Post 1 in 4 parents believe vaccines have something to do with Autism. What about the other 75%? How do we explain those children who were not vaccinated who also have an Autism Spectrum Disorder? Without any answers and empirical evidence we only have opinions and suppositions. What are we doing to help those with autism now?

The majority of money and celebrity backed organizations have been focused on the vaccine arguement and are committed to funding research. Research is one important piece of the Autism puzzle, but it is imperative to recognize research dollars do nothing to help children and adults living with Autism today. Right now more and more families with Autism are losing their jobs, homes, healthcare, marriages and hope, while millions and millions of dollars continue to flow into research. As the prevalence of Autism continues to grow so do the numbers of people in desperate need of services and supports worldwide.

In 2009 the CDC reported the current growth rate of Autism at 1,148% impacting 1 in every 110 children in the USA, including 1 in every 70 boys. This is an increase from the 2007 report of 1 in 150 children. The October 2009 Journal of Pediatrics reported Autism affects 1 out of every 91 children between ages 3 to 19 in the USA. As the vast majority of national and international organizations remain dedicated to funding research the impacts and suffering of those living with autism grows in direct proportion. It is essential to realize that there is a distinct difference between supporting research and supporting relief.

Willing and compassionate individuals and corporations need to realize what they want to do. Do they want to help children and individuals with Autism Spectrum Disorders to live healthy and productive lives, or do they want to support research. Both of these endeavors have a role in the Autism cause and employ the very real suffering of children and families as a tool to raise money, but only one of them provides help to people now. Autism research is needed, however helping people with Autism get the assistance they need and deserve is equally important.

A study by Harvard University reported that the average cost for lifetime care and services for an individual with Autism is $3.2 million. As the number of families living with Autism increases so does the need for qualified services and supports. Another study by Cambridge University showed that appropriate early detection and intervention can reduce the lifelong costs of Autism by up to 66%, while helping improve the quality of life for people with Autism. Unfortunately, the funding to support the needed expertise and resources is falling farther behind the rapidly growing needs in the USA and worldwide. Simultaneously the astronomical costs associated with Autism discourage government agencies and insurance companies from being willing to step in and assist with these costs that bankrupt families.

The combination of the stigmas attached to the vaccine controversy and the lack of understanding about autism is exacerbating the suffering in your neighborhood and in every community around the world. These same issues impact the willingness of the media to cover autism more frequently, accurately and more effectively. The result is that corporations and individuals who want to help are uninformed about where to give and how they can actually help children and families with Autism. The belief that just because they contribute to a recognized Autism Organization makes a difference for children or families with Autism is misguided. In many instances they are supporting more research, lobbyists and overhead and not the children and families the desired and intended to help.

There are a plethora of fundraising events in the worlds of Pro Sports, Music and Hollywood, not to mention the TV Commercials with Celebrities and Athletes too. But, have you ever met a family with Autism who these events have actually helped…maybe you should ask families with Autism living in your community who is helping them before deciding where and how to contribute. These community-based events executed by large charities typically do not provide direct support to individuals in the community where they are held. This is true of most causes, not just Autism.


Connections + Money = Results. This equation ultimately determines what organizations get support and how much if any they’ll get. The big organizations have the connections and influence to raise and allocate large amounts of money to the research they are dedicated to. The community-based operations that are actually helping people with Autism do not have the benefit of the name recognition, connections and influence to attract the same opportunities and support to help all those in desperate need. The majority of local events attached to a large national organization maybe held your town, city or state but does not mean the funds raised will go to help people who live in your community. In most cases those funds go to the corporate headquarters of the national organization and are allocated to research, political lobbyists, TV commercials, operating costs, etc. This may advance research, but does little if anything to help those living with Autism.

A recent poll showed that over 90% of people surveyed believe the funds raised for Autism need to be directed to helping those children and individuals with Autism now. Less than 10% of those who responded said they believed these funds should go to fund research. Willing and Compassionate people want to help children and families struggling with Autism, but in reality they only know the name of the organizations they see on TV. Individual and Corporate contributions are supporting these outfits without understanding where the money is going.

Name recognition raises money and awareness about the cause, but these recognized organizations direct the funds predominantly toward the research aspects of the cause, and only use a tiny portion of it on supporting individuals with Autism. Although research organizations claim they help children and families with Autism, just like smaller the parent driven organizations in your community do. How much does the organization raise in these communities and how much are they investing in helping those with Autism in these communities. There are two sides to every story, but the truth can be found by following the money.

Be A More Effective Difference Maker

When we hear it’s Autism Awareness Month the charitable instincts inside us kick in. Sometimes we charge into action with the best intentions, but without the right information to make the best decisions. There are 5 questions everyone involved needs to ask first if they want to be sure they are making the greatest difference. It does not matter who you are…so if you’re a celebrity, corporation or just a dedicated supporter there are some things you need to know. They are Who, What, Why, Where & How? It sounds like a cliché or plain old common sense, but our take on these questions might surprise you.

1. Who do I want to help? (the Cause, the People, the Professionals)

Find out about the cause. Learn about Autism, and not just the statistics. If you answered “I want to help Autism” then we’d explore what about autism you want to help? The first step has already been accomplished…wanting to get involved and help. But now the real question is who or what inspired me to want to help the Autism cause. Figure it out from the point of view you have…what’s important to you? Is it the Cause, the needs of Children and Families, the Professionals, Other Services…remember you need to decide.

2. What am I doing to help? (Donating, Appearing, Sponsoring)

Once you understand the cause and who you want to help it’s time to ask what I am doing to make that help realized. Knowing is half the battle, right? So knowing what you are participating in is crucial. Is it an event, awareness campaign, donation, appearance, fundraiser, sponsorship or is it something else. Don’t do something just because it’s popular or support an organization simply because of name recognition. Make informed decisions and do what you feel is right.

3. Why I am helping? (Help People, Help Research, Help Awareness)

This is the connection to the cause. “I want to help families with direct support”, “I want to help research find a cure”, “I want to encourage people to help” there are several reason why we help, and sometimes the reasons are more personal like for “my son”, “my niece”, my brother among others as well. This is your compass guiding your heart and support for this cause you care deeply about. A word of caution here…some organizations use celebrities, similar imagery and fundraisers, but support completely different things…so make sure you know why your helping.

4. Where does the Money Go? (Direct Help, Research, Lobbyists, Other)

This is always where the rubber meets the road. Seems easy enough, but as in any meaningful endeavor there is more to it than meets the eye. After answering the first 3 questions this is something you already thought about…but if you find this a difficult question to answer then ask the organization or event where the money goes. You might be surprised one way or the other. Large events in your community may not even give money to people in your town or even your state, instead the money goes to costs and to the corporate headquarters instead of to the cause. So if you want to help in your community you might be better off supporting a smaller organization with established relationships compared to the national big box charity because of a name.

For Example: If you said “I want to help families with direct support” then make sure that is where the money goes. If you raise money for organizations that do not provide direct support to families with Autism…don’t be surprised when the money goes to research, political lobbyists or somewhere else. In other words if you’re supporting research make sure you are supporting research…If you’re supporting help for children and families with Autism make sure the money is helping them. Ask some directly in the cause. If you want to help families with autism then ask families with autism what they think about an event or an organization…they might tell you something you need to know. Don’t assume that every walk for Autism is the same. They may both involve walking but who the beneficiaries are could be very different…so find out.

5. How does this impact those I originally set out to help? (People, Research, Awareness, Other)

This is the goal you originally set out to reach. Did I do something that contributed to making a difference for the people I set out to help? If you answered questions 1-4 you already know you did make a difference. When you understand the cause you want to help, the people involved, what you are going to do and where the money goes…You will have done more than simply meet the need…you will exceed even your own expectations.

What is Autism Awareness Month?

I know you’ve heard about it. Right? Autism? April? Of course you have. Beyond the obvious April and Autism connections what do you really know about Autism? Chances are if you don’t live with Autism or know someone who does than you probably don’t know what Autism really is. Statistics can show prevalence and create a sense of urgency about Autism and other causes, but statistics don’t describe what Autism is and how it impacts people. Knowing about celebrities who have a child with Autism, or who have a charity for Autism still does not answer the question what is Autism? So this year during Autism Awareness Month we decided to try a different approach to educate the world about some of the facets of Autism so they better understand us and our cause.

Autism is a complex neurobiological disorder of development lasting throughout a person's lifetime. Autism typically appears during the first three years of development impairing the normal social, communication and emotional functions of the brain. Individuals with Autism also experience physical symptoms including gastrointestinal disorders, allergies, sleep disorders, sensory integration disorders and more. Because individuals with autism exhibit different physical symptoms combined with neurological symptoms or behaviors, ranging from mild to severe, autism is a "spectrum" disorder, or a group of disorders with a range of similar features.

This means that on the Autism Spectrum you may have 20 individuals all with the same diagnosis, yet all 20 will have different physical and neurological symptoms, each requiring individually tailored interventions and treatment plans. The increasing prevalence of Autism combined with the lack of accessibility to qualified expertise for a growing number of children and families living on the spectrum have resulted in higher costs and waiting lists for vital assistance. The mounting shortage of services and supports is exacerbated by the lack of understanding about Autism by researchers and professionals.

A new case of Autism is diagnosed every 15 seconds worldwide, making Autism the fastest growing disability on the planet. Autism respects no natural boundaries, national borders or state lines, and it afflicts children regardless of race, religion, economics or geographical location. More children will be diagnosed with an Autism Spectrum Disorder this year than with pediatric cancers, AIDS and Diabetes combined. Still, Autism receives less than 5% of the funding of other many less prevalent and curable early childhood diseases.

Many of the Answers we want and need about autism spectrum disorders (ASDs) continue to elude science. Right now there is no medical detection, approved medications and there is no cure for Autism. Continued Research combined with the advancement of professional expertise are the keys to successes today. Access to qualified early intervention, healthcare, education and community services must keep pace with the growing needs of families living on the Autism Spectrum. Supporting community-based Autism programs and resources maximizes positive outcomes for your neighbors.

Autism Awareness Month is more than a Word, Month, Statistic or Blue Lights and TV Commercials…it’s about elevating awareness about what Autism is, and equally as important is educating people about what they can do to help make a difference. This tireless process and the search for answers began long ago and will continue to unfold one day at a time far beyond April of 2010. You may not see us…you may not hear us…but we are out there and we need your help. Don’t give up on us. Don’t forget about us when the blue lights go out or when you turn the page of the calendar.