Autism Acceptance Series Part III - My Mom Journey to Autism Acceptance and Empowerment
Posted on 04/19/19 in Advocacy by Lisa Danielpour
When my son was young I poured everything I could into helping him learn ever-evolving skills, including social communication and strategies for handling sensory issues. I focused on finding the right evidence-based approaches that worked for his unique issues and personality, while being sensitive to how different approaches affected him. It has been a balancing act of honoring and accepting my son for who he is and how he is wired while also helping him improve skills and learn adaptive approaches to best interact and find happiness in the world.
Wrestling with my son’s diagnosis in the beginning, I was very afraid of the “A” word and how my son might be judged based on it. I preferred the term “Asperger’s Syndrome” to autism because I worried about the stereotypes, reactions and images autism evokes in people.
I learned from missteps when I tried approaches that weren’t right for him and where providers with rigid attitudes hurt his feelings, trusting my gut to discontinue them quickly. For example, the psychologist who insisted that if I didn’t get my preschooler to pretend two pencils were talking to each other as if they were engaged in interactive play – as opposed to a script from his favorite Disney movie – then I was a failure as a mom. No matter what I tried for hours sitting on the floor playing with my son with those pencils, an energetic replay of Woody and Buzz Lightyear from the movie “Toy Story” ensued as my heart sank... until I realized that our best selves would come from finding therapists who uplifted us and were the right fit, and that it is not okay for someone to make my son or me feel “less than.”
As parents we want the best for our children, to help them acquire skills to the best of their abilities while honoring their differences. I came to understand that like most of us, my son is wired in a particular way. Trying to change that would intrinsically change who he is when he is one of the people on the planet I most love, respect and like.
What do I most wish for my son? To be everything he wants to be, to follow his dreams and to most of all be happy. I am so proud of the incredible young man he has become.
If I had a magic wand, it would be for the broader community to not have preconceived notions about who people are because they appear to be different, or do not meet our notion of how people are to behave. And most of all, not because of a “label” like autism. Building awareness is nice but I want it to include learning about autism, understanding how each person with autism is a unique individual, and acceptance.
As Dr. Stephen Shore says, “If you’ve met one person with autism, you’ve met one person with autism.” Just like neurotypical people, each individual with autism brings different strengths, challenges, needs and struggles. If we could honor and care enough to see each person’s unique gifts and seek ways to bridge potential gaps, including providing appropriate accommodations, I believe our communities would be richer in the most important ways. That is my wish for International Autism Acceptance and Awareness Month.
Lisa Danielpour is a marketing and social media consultant from Cleveland, Ohio. As the mother to a young adult on the spectrum, Lisa has utilized Milestones’ services in the past, and now serves as Milestones Digital Content/Communications Consultant and on the Milestones communications committee. Lisa is also a passionate patient and family advocate and national speaker. She is Vice President of the UH Rainbow Babies and Children’s Hospital Patient and Family Partnership Council and a member of the Rainbow Hospital Quality Council, National Institutes of Health Clinical Center Patient Advisory Group and National Health IT Patient and Family Advisory Council. This article also appears on Lisa’s Gooseling blog that supports families raising children and teens with special needs or chronic illness.