Autism Acceptance Series Part I - Awareness vs. Advocacy
Posted on 04/17/19 in Advocacy by Mia Buchwald Gelles
Autism Awareness Month is a great way to call attention to autism in the general community, to make sure that conversations are started and that people, employers, and community members become more sensitive to the various needs of people with autism.
However, for me as a parent, awareness does not go far enough. Acceptance of people with autism and the neurodiversity that they bring into this world is important and inspiring. I love how some employers are now recognizing the real advantages that having the skills and perspectives of people with autism as part of the workforce is good for the bottom line, as well as company culture through new and expanding autism-at-work programs.
But my opinion as a mother who has raised a child with autism is that the key word is neither awareness nor acceptance, but advocacy.
After the initial shock of the diagnosis, the most important work for me as a parent was advocating for my son to learn skills that would provide access to as much of the world as possible.
I did not do this on my own but rather assembled a team to help.
Advocacy meant getting on waiting lists to see SLPs and OTs with specialties in treating children with ASD.
Advocacy meant registering my son with our school district at age 2½ to request a multi-factored evaluation, the first step towards developing an IEP and receiving excellent, free special education services beginning the day he turned 3.
Advocacy meant training tutors on Behavioral Interventions (Applied Behavior Analysis) to supplement the other interventions to effectively teach and reinforce the skills being taught in the other settings mentioned above. I went to many therapy sessions and came to school to see how they were working with my son so that I could use the same techniques at home and teach them to my husband and parents.
Advocacy meant teaching my son how to communicate his wants and needs, whether help was at hand or out-of-sight. This started with teaching him to say, “I’m awake, come and get me (out of my crib)” and “push the swing”.
Advocacy meant teaching my son how to expand his circles of communication from a single exchange to a back-and-forth conversation on a single topic.
Advocacy meant teaching my son how to follow single then multi-step directions.
Advocacy meant working with my son on fine motor skills in self-care and eating.
Advocacy meant teaching my son how to reciprocate social interactions to build relationships.
Advocacy meant teaching my son how to say “I don’t know” and eventually to ask a question to clarify an ambiguous request or information.
Advocacy meant teaching my son how to effectively use his free time.
Advocacy meant getting to know my son’s teachers each year so that we could support my son’s academic work at home with pre-teaching and appropriate homework support.
Advocacy meant providing my son with opportunities where he would have to advocate for himself and what he wanted – his favorite being attending summer camp.
Advocacy meant giving my son the language to talk about his autism to others. This was essential when he eventually went to college and needed to let professors know what accommodations he needed. Giving him words to understand and normalize his autism, starting with “I learn differently than most other kids” has been essential in providing him with self-respect and a sense of accomplishment in the face of having to work so hard just to keep up with typical peers.
My strong advocacy, not just acceptance or awareness, has given my son the skills he needed to be successful in life, school, college and now at his job. Each person with autism has their own path, and advocating for teaching as many essential skills as possible throughout their lives helps to maximize their potential.
The most important thing for a parent is advocating so that your child has the skills to engage with family and community and to make their own decisions, as much as possible, about how they want to be a contributing member of society.
Happy Autism Advocacy Month!
Mia Buchwald Gelles, Operations Director and Co-founder of Milestones, oversees daily operations, finance, technology and HR. Mia uses her expertise in nonprofit management and project planning so Milestones can effectively serve the community. Her technical skills have enabled Milestones to develop and evolve the website and database as the organization has grown. Prior to Milestones, Mia provided 20 years of lead program management and data solutions for nonprofits and governmental agencies. Mia serves on the executive board for the Ohio Coalition for the Education of Children with Disabilities (OCECD).