Pride, Purpose and Oh, Yeah…That Paycheck

On the anniversary of the Americans with Disabilities Act (ADA), Labor Secretary Tom Perez said, “People with disabilities want to work. They want to be independent and self-sufficient. They even want to pay taxes. They want the feeling of pride and purpose that comes with waking up every morning, performing a job, and earning a paycheck at the end of the week.”

Agreed! There’s no doubt that the ADA has revolutionized the way this country thinks about hiring people with autism, but it’s still very much a work in progress. Real acceptance doesn’t just spread information about the prevalence of autism; it also champions the policies that lessen gaps for people living with it.

The harsh truth is that, once a student ages out of public school, there is a huge drop off in autism awareness and acceptance in the outside world. For too many of these young adults, when school lets out for good, there is no next stop. They simply go back home and sit on the sofa.

This scenario may seem way down the road for those of you who are just trying to get through the next IEP without crying, but loving someone with autism changes you. It can defeat you or it can turn you into a fighter.

What Happens Next

In the seven years since our autistic son aged out of public school, our focus has been on finding him meaningful work: Jobs that challenge him, provide a decent paycheck, and keep him active, preferably outside. And there have been a few.

At 23, he was hired as part of the huge workforce that cleans office buildings for military personnel in metro DC. The job came with health benefits and minimum wages, but most importantly, the job offered him a little dignity. Now this is no fairy tale so it shouldn’t surprise you that the awkward moments kept piling up. Two months later, David was demoted to a part-time job cleaning restrooms at rural county parks on a mobile work crew with no consideration for his skills or potential. The health benefits were gone and his pay was scaled back to about six bucks an hour.

Five years later he snagged his dream job: working with the National Park Service, guiding concert-goers to their parking spots and ferrying them to their seats at Wolf Trap. The downside? It was seasonal work at the park. After five successful months, it all came to an end in mid-October. Time to look for another job.

Getting in the Loop

It’s said that parents of autistic young adults are chronically angry. You bet we’re angry and the lack of good jobs for this population is a major reason why. Now, I believe every job has dignity, but part-time, make-work, or dead-end jobs that pay below minimum wage are not a sustainable path to economic independence for any of us.

You see, I don’t want taxpayers to have to take care of my son. I want my son to be a taxpayer — part of the nation’s work force, rather than a drain on it. For that to happen, young adults like my son need to be in the loop for good jobs that challenge the soft bigotry of low expectations for this population. We need to see more business owners and managers recognizing and utilizing the wide range of skills that job seekers with autism possess. Everyone should have the opportunity to contribute in his or her own way and feel good about those contributions.

So, it’s time to change the conversation. It’s time to stop seeing autistic people as targets for pity or a cure and turn our attention to the hundreds of thousands of these young adults who deserve equal access to real jobs in order to live as independently as possible.

Presume Competence

Here’s a job-hunting tip: Exposure makes an enormous difference in an outsider’s acceptance of autism. So prospective employers need to hear the voices of our grown-up autistic sons and daughters who are likely to say they want to be accepted and valued for whomever it is they’ve come to be:  adults with matter-of-fact needs such as equal access to jobs and the skills to succeed with the support and legal rights they’re entitled to.

However. Although every young adult should be free to dream, they must attach those dreams to reality. Autistic adults must learn to speak up for themselves about their behavioral quirks or bumpy social skills. At the same time, they should define the environment they work best in. Maybe it’s as simple as creating a quiet, distraction-free work space, building in occasional breaks, or easing into changes slowly—simple strategies that are not so much accommodations as productivity tools.

My Kind of Different

Update: David learned to be candid about his autism and is currently working downtown for the federal government as a mail clerk under Schedule A. It’s not a perfect job, but it’s a good start and when he gets off the subway every morning, he can take pride in the knowledge that he’s building himself a path toward independence. So here’s the take-away. Be inspired to act, because every time an autistic worker moves into a good job with competitive wages, the barrier of doubt and fear surrounding autism gets lowered. In other words, become the change you want to see.

About the Author Glen Finland is an author, autism advocate, and a freelance journalist who lives in the Washington, D.C. area. She is the 2012 recipient of the University of Georgia’s Medal of Excellence in Communication for Next Stop: An Autistic Son Grows Up, a candid portrait of her son, David, and the complex relationship between a child with autism and his large family as he steps out into the real world alone for the first time. Next Stop was Penguin’s Pick for Disability Employment Awareness Month in 2012.

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