Living with Autism: Sharing stories of challenges and triumphs

According to the U.S. Centers for Disease Control and Prevention, about 1 in 44 children has been identified with autism spectrum disorder. While that may seem like a large number in the aggregate, it is easy to see how autism can be hidden from view for most people both within and outside the workplace.

Chances are very good, however, that one of your work colleagues has a child or family member with autism. I am one of those colleagues, as the proud parent along with my wife, of a 12-year-old-daughter who was diagnosed with autism around the first grade. As you might expect, like anyone who has embarked on this unplanned journey as we did, we have been learning as we go.

With a lack of information and resources about autism readily available, we have been thankful to meet other parents who could guide us based on their experiences and connect us to the right resources. That’s why I was honored to share my family’s personal story with my fellow Conduent associates in April at the invitation of our company’s DisAbility Employee Impact Group. I also was grateful to hear the story of my colleague, Libby Cunningham, a Business Analyst in Conduent’s Government Solutions group, about her experiences in raising her autistic son, who is now nearly 30.

By speaking out, even when it can be hard to talk about our personal lives, we raise more awareness about autism, disseminate information to those who need it, and help to clarify misconceptions about people with autism to create a more inclusive community. As we just finished recognizing Disabilities Awareness Month in March, I also appreciate working for a company that encourages and supports workplace programs that promote inclusivity and equal access.

Knowing that autism could be more common in the workplace than many people realize, leaders may need to change their approach, demonstrate situational leadership, and get out of their comfort zones to understand and connect with the personalities of the associates they manage. As Libby noted, managers may need more training and education about autism to learn how to supervise and work with team members who may have different, more specialized needs in order to achieve success.

From a personal standpoint, what we have learned through our own family’s experience is that being parents of a child with autism can start with denial and frustration, but efforts quickly shift to searching for answers and help. For example, not all schools offer autism programs, and those that do can be harder to get into since they cost more money for public school districts. In addition, families might incur legal or other expenses to advocate on behalf of their child.

Thankfully, we met a neighbor with an autistic child who explained to us how it all worked. One of the most helpful things for the parent of an autistic child is to find other parents of autistic children as well as a professional advocate, such as a social worker, who can share their experiences and advice. It creates a network and a community.

That’s another reason I was looking forward to participating in this Conduent event for our associates along with Libby, who shared her own unique experiences. For example, she noted that insurance often doesn’t cover autism services and there are parts of the U.S. where resources, doctors and programs are simply not available. Very few of the schools in her community in Tennessee had self-contained special education programs. She added that, due to a lack of public education resources available into adulthood, high school graduates may find it harder to access the few colleges with programs for students with autism.

She also emphasized the great potential for people with autism to have rewarding jobs, contribute to communities and live independently -- just as her son has done. However, it is concerning to note that 75% of adults with autism are unemployed or underemployed, and, compared to their peers with other types of disabilities, young adults with autism had the lowest rate of employment. While we have a lot of optimism for the future for our daughter, we know we have a long way to go on our journey.

Today, my daughter is in the sixth grade and next year she will be “full mainstream” at school with some support. While she still has difficulties with loud noises and physical contact, she not only has learned how to cope with her autism but she also has developed new skills to help her to continue her progress – thanks to a lot of help and support that she and our family have received along the way. By sharing our stories, resources and experiences, I am hopeful that we can make it easier for those with autism to have fulfilling, productive lives and make it easier for parents to provide them with these opportunities. And, as mentioned earlier, I am grateful to work at a company that provides a platform to create awareness and offer insights that may help many others.