Published in TAP The Autism Perspective magazine Dec 2005

It’s Not About Jobs,
It’s About Income and Interests

by Chantal Sicile-Kira

Temple Grandin, accomplished author of Thinking in Pictures, Developing Talents, and Animals in Translation, associate professor of animal science at Colorado State University, as well as the founder of Grandin Livestock Handling Systems, Inc. believes that her work is what gives her life meaning. However, for most people on the spectrum, even those on the more able end of the Asperger/Autism continuum, it is difficult to find work, let alone meaningful work. In a study of 18 individuals who had Asperger’s, HFA or PDD, all participants reported lengthy periods of unemployment and underemployment, although they all described themselves as hard workers and good workers. Unemployment rates for working age adults with disabilities have hovered at the 70% level for at least the past 12 years.

Concerned about the high rate of unemployment for those on the spectrum, La Casa Center for Autism in San Diego decided to host two conferences on micro-enterprise as it applies to people with developmental disabilities. La Casa, whose mission is to foster the independent lifestyles of individuals with autism, invited Doreen Rosimos and Darcy Smith of Income Links to explain the concept and to help individuals interested in doing to start their own business.

Currently, even many of those with special interests and talents are unemployed or under-employed for a number of reasons. First of all, the education system as it stands now, is not preparing our youth as it should during the high school years for real life as a working adult. In a report published in July 2002 by the President’s Commission on Excellence in Special Education it was stated that “Too few [children with disabilities] successfully graduate from high school or transition to full employment and postsecondary opportunities, despite provisions in IDEA providing for transition services.”

Secondly, there are special circumstances which make it hard for individuals on the autism / Asperger’s continuum to work in traditional neurotypical employment settings. Most everyone on the spectrum suffers from one degree or another from sensory processing difficulties. Fluorescent lights, noise, the unpredictability of some environments can make it difficult for such a person to spend much time in typical work environments.

Last but not least, the social rules inherent to the workplace can be mind boggling to many individuals on the spectrum. The ‘hidden curriculum’ at work can make it difficult for them to be successful in the long run and work towards a career.

Micro-enterprise, or small business ownership, can be a way for people to market a particular skill or provide a service that is needed in their local economy. For those on the more able end of the spectrum who have an apparent talent in a particular area, the business can be built around that. For those more impacted by autism, it is still possible to create a business that incorporates an interest they have. In both cases, looking at what the needs of the local market are, and contracting out the parts of the business they are unable to do is key to the success of the business.

Darcy and Doreen of Income Links know from personal experience all about starting up and running small businesses, as well as about implementing self-determination, a guiding principle in the concept of micro enterprise. Both Darcy and Doreen were founding members of the Center for Self Determination, a national organization dedicated to changing the nature of the support and service system for individuals with disabilities, using the principles of self-determination to help all persons create the lives they want, connected to and with their communities.

Doreen’s brother Jack, who is severely disabled physically and mentally, was her impetus for getting involved in the self-determination movement. Darcy came to self determination by way of her career in mental health, which included group home management and vocational services. Their guiding beliefs are that failure is not an option for anyone, that it does not take a lot to make more than nothing, and that “It is not about jobs, it’s about income!” For years now they have been traveling around the country helping people with developmental disabilities figure out what kinds of businesses they could have, or how to set up a business around their interest. For example, in Alaska there’s a young woman who, since she was a little girl, has loved and been obsessed with weddings. Now, as a young adult, she has created with the help of her support team and parents, a business based on her interest: she buys previously worn wedding dresses and resells them via the internet to those looking for ‘nearly new’ weddings dresses. In another state, there are two young men who were at school together for many years, but then ended up bored to tears in two different workshops. They knew they wanted to work together, but were unsure as to what they could do. Darcy and Doreen discovered that in their area there were Amish who made beautiful baskets but needed help in marketing them and actually getting orders placed and then sent out, because they do not have access to modern technology. So, these young gentlemen fill this service need.

For micro-enterprise to be successful, there needs to be one or two people to help get it started. Once it is up and running, the business will contract out the parts of the job they cannot do. For example, if a particular business entails driving from one place to another, but the business owner cannot drive, he will pay someone to drive him. If a young adult is really good at graphic design, but has no people skills, he can pay someone to do the marketing and get the jobs for him. So, in essence, those who are helping the business owner are his employees, not his aides. Isn’t that a wonderful shift of power?