By: Trang Peltier
Disclaimer: Other than the sourced information, this article is based on my personal experiences and impressions in raising my autistic child and should not be treated as generally applicable to the Autism community or construed as legal advice.
A Personal Story of Advocacy and Hope for inclusion
I have a child who was diagnosed with Asperger’s Syndrome, a neurological divergence that was included as an Autism Spectrum Disorder (ASD) in 2013. Although there were telltale signs in the early years that something was different, it was still a shock to have an official diagnosis of autism when he was just three years old. I tried to rationalize it, needing an explanation. For a while, I obsessed over my pregnancy and what I could have eaten or did to my body that “caused” him to be autistic. I felt guilty and uncertain about the future. Ultimately, I knew my husband and I needed to focus our attention on how we could help our son live and thrive with his ASD.
It was all very overwhelming. For every specialist, and there were many, we filled out endless intake forms redundant with questions about genetics, developmental growth, lifestyle, diet and so on. Additional time and energy were devoted to home research. My husband and I vigorously read books, Blog articles, and studies on ASD. We had to really understand our son’s diagnosis and his needs so that we could help others understand him too. We also had to make sure his younger brother had the emotional and parental support he needed as well. It has not been easy for him. ASD affects everyone in the family.
With autism and officially labeled as such, my child would encounter extra challenges throughout his life because he thinks and processes things differently. We had to consult behavioral, occupational and speech therapists. We had to identify reasonable accommodations for him at school and find suitable extracurricular activities. His inability to organically make personal connections was heartbreaking and required training in social skills, speech, and mindfulness.
It was already obvious he was full of knowledge; he just needed the supportive conditions to allow him the space and time to express it. Unfortunately, this was not always available. Along the way, we faced resistance, rejection and judgment from educators, parents, classmates, and strangers. Finding a suitable and inclusive learning environment was like guesswork, and we even resorted to home-schooling for a year. However, he preferred to be in a traditional classroom.
We have always been transparent with our son about his autism. He is very self-aware and knew early on he was different from other kids. At the beginning of the middle school years, he bravely gave presentations about being autistic so his teachers and classmates could understand him better. As parents, my husband and I were hoping for compassion and acceptance. Once he was in high school, he became less comfortable speaking about his autism as he did not want the stigma of the label. We could not fault him for feeling this way. My son simply wants the same opportunities afforded his neurotypical counterparts and is committed to doing the work this requires.
Despite the inherent challenges, he perseveres to the point of exhaustion at doing well in school and making social connections. We are privileged to witness the progress he makes every day, and his future looks promising. In just over a year, he will be preparing for his first year at college. We believe he can live an independent, productive life wherein he will be able to make a positive difference. For him and everyone living with ASD, we hope societies worldwide will only become more understanding and accepting of this exceptional community.
Personal and Professional Reflection as an ASD Parent
After having my children, I always expected to return to my legal career in some meaningful capacity. With the amount of support my child needed after the diagnosis, I could not immediately foresee returning to work while my husband is serving active duty. Supporting an autistic child within military parameters was disruptive with frequent station changes – we had six moves before my children completed middle school. Every relocation usually required a two-to-three-month transition period which included identifying new specialists and schools, tailoring and executing acceptable learning plans, and attending as many school meetings as needed. To establish good will with each school community, I volunteered in the classrooms and library. Always anticipating a concern, I could never be without my phone or stray too far away from school in case someone needed me. The idea of receiving a missed call or voicemail from the school was crippling, but it inevitably happened on those rare instances when I left my phone unattended for just a minute.
Over time, the in-person interactions and phone calls became less frequent because our son was progressing. His diagnosis at an early age was critical as it ensured him legal protections going forward and access to providers who could support him in ways we could not. In hindsight, my professional experience was not wasted as I initially feared. My disability law training became indispensable in understanding his rights in the classroom and efficiently navigating the procedural guidelines for academic adjustments. With comprehensive knowledge about my son’s ASD and the applicable laws came the ability to effectively advocate for him. Taking a collaborative approach with his educators was just as essential in securing optimal learning conditions. We are grateful for those who worked with us, giving him the chance to learn and contribute his ideas in the traditional school environment he desired. Most importantly, he feels respected and included in his community.
Recommended reading materials:
Love That Boy by Roy Fournier
NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman
The Girl He Used to Know by Tracey Garvis Graves
The Curious Incident of the Dog in the Nighttime by Mark Haddon
The Rosie Project by Graeme Simsion
Trang T. Peltier, J.D.
Trang has a background in labor and employment litigation and Human Resources consulting. She is licensed to practice law in Texas and Colorado and currently resides near Colorado Springs, Colorado.