When a child is born, parents are thrust into the role of attending to their needs. As new parents, we are concerned with finding everything our child needs, be it the right bedding to the best fitting diapers. As our child grows, we continually try to create opportunity and new experiences for them. Perhaps we enroll them in preschool or maybe a dance class. During doctor’s visits, we speak on their behalf. In the most important job of our lives, many parents’ experience both immense joy and daily challenge.
Although each child is unique, some children share a diagnostic label on the autism spectrum. As many parents of children with autism know all too well, there are additional barriers or challenges that have little to do with their actual child. Creating opportunities where a child can learn, grow, and be shown loving-kindness shouldn’t be all that hard, should it?
Yet it is. Parents raising children with ASD experience difficulty creating these opportunities. In fact, finding the right school, discovering a hair salon, buying foods that your child will eat, and many other needs, can take a little more than just mindful attention. So, you do what you have to do, you just figure it out! And as every parent knows, our children are worth every moment that it takes.
John Donvan and Caren Zucker, authors of In a Different Key detail in their book parents campaign to create a better world for persons with autism. This book review captures only a glimpse of the power or parents.
As Donvan and Zucker detail in their book, the autism community has been made infinitely better by parents who have just figured it out!
In 1972, Connie and Harvey Lapin were told to “just figure it out” by Dr. Rieger of Camarillo state hospital children’s ward. And figure it out they did. Their son Shawn, who is now 47 years old, was a small child whose parents wanted the best for him. As explained in In a Different Key, the Lapin family had already endured plenty of painful moments where Shawn was excluded from every day childhood experience. This included being kicked out of a Los Angeles district public preschool after three days. In a separate experience, at the very tender age of three, Shawn was “slapped and had diluted mustard squirted into his face” (Donvan & Zucker, p. 169). At the time, Shawn’s parents felt lost in their attempts to find places where Shawn would learn and grow. Rather than complacency, they chose action. Shawn parents figured it out indeed.
The Lapins are not alone in being fierce advocates for their child. Their efforts have opened doors for other children in similar circumstances to Shawn. There are many, many empowered parents that have improved access for persons with autism, both in our past and today. Parents, like Connie and Harvey, have blazed trails and create sizable changes in educational rights, medical rights, and within the 21st century, the neurodiversity civil rights movement.
In 1974, a parent-run advocacy group called the National Society for Autistic Children (NSAC) lobbied state governments for mandatory educational access in public schools (p. 177). Yes, that’s right, prior to 1974 children with autism could lawfully be excluded from receiving a public education. Kimberly Gund, Harvey Lapin and many more parent-advocates opened the door for the landmark law that we are all so familiar with, IDEA—which allowed all children to be educated in the public school system.
Jumping forward to present day, having just the right to attend school is not enough. In 2016, many parents find that the district’s model of “appropriate” is much less than their child needs to thrive in the educational environment. Yet parent-to-parent guidance continues to be how many navigate this difficult system.
Perhaps more important than educational rights is how the medical model addresses autism. Institutionalization was the norm for children with autism in the 1950, as mothers were blamed for their child’s neurological differences. The predominant scientific belief at the time was that autistic tendencies were the result of a cold and distant mother, termed “refrigerator moms” (p, 79). Doctors formally recommended institutionalization. Yet, many strong parents rejected doctor’s advice. In the 1960s, parents such as Ruth Sullivan started to challenge the prevailing model. Armed with love, parents united and broke down barriers (p. 106).
For many parents this period feels like long in the past. However, the history of autism would have shifted greatly if parents hadn’t intervened on their children’s behalf. Pioneers such as Temple Grandin and global autism ambassador Stephen Shore are household names whose future would certainly have been bleak had their parents not demanded better and not listened to the doctor’s recommendations at the time. Chou Chou Scantlin’s mother also defied doctor’s advice. Rather than institutionalizing Chou Chou, her parents decided to raise their daughter at home.
The battle of where persons with autism would be raised and by whom, is certainly a thing of the past in the US. Today both self-advocates and parent advocates are now championing our housing crisis. For instance, leaders like autistic self-advocate Ari Ne’eman are demanding more inclusive housing practices for both his current peer group and the half a million autistic children that will be adults in 2023 (p. 550).
Parent advocates haven’t quite passed the baton, but there are certainly other runners in the race to create more inclusive society for persons on the autism spectrum. Similar to parent advocates, new self-advocates are emerging each year to fight for their own rights and needs. In 2004, Alex Plank created Wrong Planet, an online community for neurodiverse people (p.503). Wrong Planet quickly became the hub for self-advocates who wanted a sense of community. More than that, Plank became a leader in the global discussion on what it means to be autistic (p. 504). Plank, Ne’eman and others continue their avid advocacy for everyone that shares the diagnostic label autism spectrum disorders.
There is so much that needs to be accomplished within our global community to include, accept, and support persons with autism throughout the life span. Thankfully there are many talented and dedicated self-advocates at the helm. But before the neurodiversity movement, there was another important movement. That of parents helping parents. This mentorship processes to guide is still alive, well, and a primary source of information and support for many parents.
These parents have fought and advocated for these changes because of one profoundly simple construct—love. The love that they have for their child and love that moves parents to do anything they can for them.
Parents Helping Parents
That’s right, parents do figure it out! Their figure-it-out attitude is fueled by determination and grit, but mostly love for their child. The autism community has so many examples of parents-helping-parents. In our San Diego community, we are lucky to have many parents who continue to create change. At Love & Autism, we know the power of parents’ love. We know that love is the strongest motivator. Giving and receiving love feels better than basically any other aspect of our human experience.
We are extending the work of Donvan and Zucker by inviting parents to present as part of our conference. At our breakout sessions, parent leaders will be supporting other parents with their years of hard work and labor of love.
Award winning author, Chantal Sicile-Kira will present A Full Life with Autism: How to Prepare for Real Life. Chantal is both proud mom to acclaimed artist, Jeremy Sicile-Kira, and strong advocate for inclusive practices. To date, she has written six books on what it means to have autism and how to support your child with autism in creating a full and satisfying life.
Celina Vitoria made a huge shift in her professional track when she recognized the massive divide between who she knew her child to be and how some professionals viewed her child. She understood her child needed a way to communicate and those around her seemed ill-equip to help. She found her own path. She taught her son how to communicate using Rapid Prompting Method (RPM). Rather than stop with her own child, she’s transformed her passion into a profession and is a trainer of RPM. She will be sharing her journey at Love & Autism.
Laura Sylvester is another strong example of someone who let her love for her child guide her professional path. As founder of Good Dog! Autism Companions, Laura puts trained canine companions in many homes. Giving many persons with autism unconditional love from their dog. Laura, alongside our very own Brain Bovino, will share about the importance and benefit of non-human connections.
Hela Kammoun Bali
Hela Kammoun Bali, mother to a beautiful daughter with autism, recognized the limitations in treatments and sought out a better way to work on regulation. She brings to Love & Autism cutting edge treatment in her presentation, Bringing Peace to the Sensory System using the MNRI method.
Hannah Smith LA Frenz, mother and a woman with autism, will take us on a in-depth discussion about spirituality and faith-based communities and the roles that each play within our hearts. Both faith and spirituality are considered a relationship that serves the soul.
Debra Hosseini, Keri Bower, & Kristina Bant Jenkins
The founders of The Art of Autism, Debra Hosseini and Keri Bower, both parents to autistic adults, will display art by autistic self-advocates. Kristina Bant Jenkins, will premiere her photo exhibit This is Autism at Love & Autism. She is loving mother to her adorable, Charlie.
So much parent-to-parent wisdom! So much love.
Parents have a long history of doing big things in the name of love. Your change starts here!
Join us at Love & Autism to hear John Donvan and Caren Zucker share about the stories from In A Different Key. At Love & Autism, you can also meet the authors and have your book signed. You will also meet plenty of parents just like yourself, who are definitely figuring it out for love!
Register for 2016 Love & Autism conference.