The Autism Society Event and Education Recordings Archive

This panel presentation brings together personal stories of two young men growing up with autism and two parents with children on the spectrum. It is well recognized that the diagnosis of individuals on the autism spectrum has increased exponentially in the last decade. In order to adequately support children and adults on the spectrum, we would be wise to seek to understand what it is like firsthand to live with ASD, on a daily basis.  To fully grasp the range of experiences, perspectives, and challenges someone might face, it is essential to turn to those people who live it on a daily basis, as the true “experts,” in order to gain that understanding.

Historically, some professionals in the autism arena have acquired misinformation upon which they base theories and interventions.  These approaches often miss the mark in providing effective services to this population. Fortunately the field is expanding and growing in positive ways.  In part, this is due to an increase in the number of adult advocates on spectrum who are speaking up and contributing valuable input to the field.

A twenty-one year old self-advocate will discuss how he experiences autism, emphasizing the fact that each person on spectrum is unique, as is also true for non-spectrum individuals.  He discusses his processing challenges, to include such areas as visual, auditory, and executive function processing. People who work with this population can misinterpret processing difficulties as non-compliance. Knowledge of this area of difficulty is crucial to work effectively with individuals on the spectrum.

He will also address how he experiences the mismatch between the fast pace of our culture and his own comfort with a slower pace.  The complaint that the world goes too fast is commonly expressed by other adults on spectrum. The quick pace of our culture also complicates the difficulty that individuals with ASD have with sensory processing challenges.

It is always helpful to hear from adults with ASD about which interventions and therapies were most beneficial to them in overcoming some of the barriers to feeling comfortable in the larger community. There are so many theories and strategies that have sprung up in recent years. Having a self-advocate be articulate about which approaches did the most good can be instructive to parents of younger children who easily feel overly inundated with suggestions about what to try for their own child.

has some strong opinions about how he expects to be treated by others. He has also developed strategies for successfully communicating his needs to others in a respectful way. He will talk about some of the different experiences in his life that have helped him learn to speak up.

He has a strong sense of justice which informs his “hot tips” for how parents can effectively relate to their own children. In this discussion, he will cover the distinction between punishment and discipline, and his own ideas for how to best relate to children when they are having difficulty controlling their behavior. He also strongly promotes teaching children a variety of self-soothing strategies, given the anxiety that is inherent for so many people on the autism spectrum. Teaching relaxation strategies is a skill that will come in handy lifelong. 

This session will be informative for participants about what people with ASD might experience from the inside-out. It will also expose them to a young man who is inspirational, not only with his positive attitude, but also with the challenges that he has worked so hard to overcome.

I’ll be reading chapters of my book A Regular Guy: Growing Up With Autism that focus on the issues that families living with an autistic child deal with every day. The stories offer hope and solutions to problems such as school placement, sibling difficulties, community education, and the never-ending stress of daily life.

One chapter tells the story of the day my son Andy, who is two years younger than my autistic son Matthew, was teased about his big brother for the first time. His response to the teasing provides a touching and helpful lesson for other siblings like him.

In another chapter, I tell the story of the day I figured out I needed professional help, and how doing so helped me brace-and cope-with our family’s uncertain future.

The stories in A Regular Guy span from babyhood to young adulthood, and provide help, humor and hope.

The presentation is the story of a young man with autism- in his own words! What began as a goal in self-advocacy and disclosure has evolved into a tag-team presentation between mother and son.

Stefan was adopted in 1991 from an orphanage in Romania. Years later he was diagnosed with autism. During his eigth grade year in school, he had a goal on his IEP on self-advocacy. As an eighth- grader, he told his story to over 150 of his peers in a power-point presentation.

In January of 2006, his mom joined in the presentation. They have presented around the state of Minnesota throughout the past couple years to hundreds of students, parents, teachers, social workers, and mental health workers.

Stefan and Barb talk about how autism affects their lives; as well as what schools, teachers, parents, and agency workers can do to help a child with autism navigate the world. Their message is one of hope and that the journey continues.

Content Area: Personal Perspectives