The question of quality over quantity is often debated in college psychology courses and business schools. It needs to be discussed more in the Autism Community. We need the same diligence, oversight of therapy and intervention programs, and the analysis of return on investment needs to be even more stringent than what is applied when building a business. Our children’s lives are more important than money, business, and politics. Yet, we often begin programs, stop short, go half-way and quit, or make rash judgements on what is working and what is not working with little hard evidence or analysis. While I was attending an executive session at MIT, we had an extensive debate during a break out session on the subject of "quality vs quantity".

The discussion was fascinating for a number of reasons:

1) There were eight people from six different countries in my breakout group
2) Five of the members had extensive civil engineering backgrounds and three of us had much broader business backgrounds (software, banking, inventor)
3) Capitalism, Communism, and Socialism were all represented
4) Most interesting of all.....every single person found themselves referring to early childhood experiences which shaped their long standing views of quality vs quantity. These early childhood experiences were so powerful that they were the determining factor for their overall perspective regardless of the advanced education or experiences they had that may have told them otherwise.

The breakout session was transformative for me. What I learned, the stories that were shared, and how I applied the information helped direct me as a entrepreneur and as a father. Ultimately, I find that quality over quantity is my preferred course of action. I could care less about having an iTunes library with five million songs....I like a nice rotation of three to five artists. From the cameras we shoot with, to our studio full of Apple products and software, quality reigns supreme. So if all of this is so important to how I live my life, shouldn’t the same be true for the services and supports that I find for my child? Shouldn’t the same diligence be applied to my role as a father and caregiver as with my businesses?

Yes.

It can be difficult to listen to parents go on and on about the 50 therapies, 3 diets, 10 creams, 13 supplements, and 2 shots they are giving their child with ASD. After the three minute ordeal of all the greatness they are giving their overtaxed child the question is simple....so what’s working? The response is typically, “Well, that’s a good question.” (ok, sometimes it is just “Well, huh?”)

The discussion quickly dives into, “Well, if we stop abc, then we feel like that could hurt his xyz. We don’t want that to happen. So, we thought about adjusting abc to see if that changes xyz.”

We’ve been there, done that. There were times when Angie and I had to take a hard look in the mirror and ask some really tough questions. Interventions and therapy are so important. You risk your entire financial future to try everything. The thought, “What if xyz is THE thing that Sam has needed all along?” used to be part of every conversation. We would read something new, hear the hundreds of success stories, and then try to find someone who provided the service in our area.

The economy has played a significant role in dictating what is possible for families. The political climate in the United States surrounding health care is a joke. Insurance reform is truly in the hands of the companies and politicians have done nothing to improve things over the last few years. The changes that started two and three years ago are at the State level and typically don’t apply to children over six or eight years of age. It’s nice that there will be benefits for those who will be diagnosed in the future. But, what is going to happen to the eight year olds, fifteen year olds, and nineteen year olds today? These families have poured hundreds of thousands of dollars into therapies and the progress being made on the front line is having little to no impact on them. The costs continue to rise, the questions have remained the same for years, and yet little has changed for the teens and adults with Autism during the past ten years as we have watched the Autism diagnosis statistics rise.

Research into the “cause” is good. But, why are we not redirecting more grants and donations towards better long term housing options, work programs, and support systems when disaster strikes and parents pass away suddenly? Why is it extremely difficult to find training courses for family members who suddenly become the guardians of a special needs teenager when a parent (in a single parent household) passes away? These may sound like anomalies but they are not. We live in one of the largest cities in the country and I am ashamed to state the real number of housing options that are available (other than State options) for adults with Autism and special needs.

Quality of care, quality of programs and services is essential. Increasing the quantity (number) of events to raise awareness and funds does little good if it is not being applied in all the necessary areas. You have to take baby steps before you run. Well, the Autism community has been taking baby steps for long enough. We should expect more and better services and programs to come from the hundreds of millions of dollars being donated, invested, and granted to “Autism” efforts.

As one of my friends in the breakout session said, “As a child I slept on a dirt floor, had no running water, no toilet, and no door on our makeshift home. I simply wanted a pad to sleep on and share with my brothers and sisters. I wanted a door to keep out the storms.”

We can’t shield our children forever and we can’t expect to be able to protect them from the challenges of life. In a country with such riches and vast amounts of donations and money going into the "Autism" community we should expect better quality of services and quality programs through all the stages of life. We must change the mindset of those who are empowered and capable of directing funds to create better QUALITY offerings for all ages and stages of life. You don't grow out of Autism. We can create quality services and systems that can be emulated and replicated. Once the quality standards are achieved, we can increase the quantity of these services but it takes time and money that is not being directed this way. Like my friend, I worry that we have too few doors to keep out the storms for our young adults with Autism.