Saturday, August 18, 2012

So many questions, so few opportunities, so few resources: How will our communities find productive solutions for the growing population of young adults with autism?

Jimmy and company at the Minneapolis Institute of Arts
with his painting Girl with Cork II
My daughter, Kelly, is entering her last year of college and our conversations have turned to the issues that many college seniors face: What am I going to do when I graduate and where am I going to live? How much money will I earn? Will my work be rewarding? Kelly is an outstanding student, college athlete and has a charismatic personality.  Truly, the world is her oyster. I have no doubt that she will find her way with great success discovering her own answers to these questions.  These questions and answers to them are significantly different for Jimmy and the growing numbers of young adults with autism.

In April of Jimmy’s last year of pre-school, I was concerned about the resources available for him in Kindergarten.  My belief was that there were many kids in the spectrum that would place demands on the system.  So, I made an appointment with our Public School District Director of Special programs. I shared with him my concerns. I asked him what his plan was to support these kids.  He responded, “the demographics just don’t indicate that we will have many kids entering the kindergarten class in the fall with autism.”  I thought that couldn’t be right.  I see these kids on the playground and in my community.  I realized that there was a huge lag in what was being reported.   I suggested that he take a closer look.  Brian and I offered to help secure outside financial help if it was needed.  In July just short of two month before Jimmy entered kindergarten, I received a call from the Director of Special Programs.  He said, “You were right.  We increased from 2 to 12 kids with autism and we have no funding to support these kids in the fall.” I was not surprised.  Brian and I got to work.  Bremer Foundation stepped up to the plate with start-up funding for a new autism classroom.  

Girl From Egypt Painting - 24"x30" Acrylic on Canvas 2012
This experience made it clear to me that planning for the future for Jimmy would take years of advanced planning because he is at the front end of the large numbers of people diagnosed with autism.  Resources won’t be there for him when he reaches milestones.  It would be our job to create them for him. When Jimmy was diagnosed, the incidence was 1 in 10,000 births and now it is 1 in 84 boys.  It seems to me that the kindergarten experience is repeating itself now as we look towards Jimmy’s future as an adult.

Girl in the Forrest - 24"x30" Acrylic on Canvas 2012

Like me, other families are seeing the writing on the wall.  Governmental services are miles behind in what they offer.  We can’t settle for less nor should families have to settle. The time is now to bring to light what families want and need for their young adults with autism.  I have met some incredible people who are helping to illustrate the need and are creating solutions. Privately funded organizations are popping up to bring creative opportunities to the table as well as to make efforts to educate our communities on what people with autism are truly capable of doing while helping communities understand where supports will be needed.  These are new employment and living models.

 Erik’s Ranch and Retreats is creating unique living and career opportunities for people with autism. Erik’s Ranch and Retreat founder/CEO, Kathryn Nordberg, is the mother of a young adult with autism.  She is using her expertise in the Assisted Living industry and translating what she has learned to people with autism.  Kathryn and her team are working hard to understand the unique skills and deficits that are present in people with autism.  In efforts to understand these realities, better solutions are being discovered and put into action.  This concept reminds me of the Johnny Mercer song – “Accentuate the Positive” – we need to be accentuating the positive skills and interests of people with autism while minimizing and reducing the negative pieces that are part of autism and the way people with autism function.

Good Bye Ron - 24"x30" Acrylic on Canvas 2012
Tim Hansen from Specialisterne is also a parent of a son with autism.  His son Joe has learned to and loves to roast coffee.  He has his own brand of coffee called, Cup o’Joe.  This is rewarding work for Joe and they have created a business model to help Joe become financially independent.  By the way, it great coffee! Tim’s work at  Specialisterne focuses on employing people with autism who have unique skills in technology. Companies like, Microsoft, are partnering with Specialisterne to fill critical technology testing positions. Specialisterne will provide the necessary supports and educate companies on what kinds of accommodations employees with autism might require.  This is good for Microsoft and good for folks with autism.

Minnesota Autism Society CEO Sherrie Kenny and her team are partnering with large Minnesota employers; 3M, Cargill, Target, Best Buy, Medtronic, Wells Fargo and Wallgreens to host an Autism and Employment Forum on October 9th, 2012.  Sherrie is also the mother of a young adult with autism.   Clearly, job creation is on Sherrie’s mind.   We need to develop employment opportunities that will allow people with autism to earn a decent living with hopes of becoming financially independent.

The story is personal for Minnesota writer and film director, Shelli Ainsworth.  The independent film, Stay Then Go, will begin filming next week in Minnesota. It is the fictional story of a mother and her autistic son. Shelli is mother of artist Dietrich Sieling who has autism.  This film highlights the many challenges families face and tugs at the emotion of moving through life managing autism.  I believe that the production of this film is particularly timely, as it will help illustrate realities and hopefully generate discussion and action for solutions.  Jimmy and Dietrich’s artwork is on the Stay Then Go website.  The cast includes Janel Moloney of West Wing and 30 Rock fame as the mother and Matthew Kane as her son whose feature film The Dinosaur Project will be released this summer.  If you live in the metro Twins Cities, keep your eyes open for filming in August and September.

I have offered examples of Minnesota families who see hope and opportunity in autism.  So, how do we respond to the statement: So many questions, so few opportunities, so few resources: How will our communities find productive solutions for the growing population of young adults with autism?

Brian (Dad) and Jimmy with his painting Girl with Cork II at the Minneapolis Institute of Arts
 I suggest that we keep conversations going and have high expectations.  Partner with people who are innovative problem solvers.  People with autism deserve a high quality life and are capable of contributing to their communities in many ways that are very important.  Like the families noted here, we can all play a role in making change.  Put your entrepreneurial hats on and be part of good solutions.