Keeping the Conversation Going After Autism Acceptance Month

The folks at the Autistic Self Advocacy Network (ASAN) put it this way:

“Autistic people need to be involved whenever autism is discussed. When non-autistic people make decisions about autism without autistic input, those decisions are usually bad. We can make policies that help us live our lives and teach people how to be understanding and supportive of the autistic community.”

By learning more about autism and listening to the voices of those with autism spectrum disorder, we can all help support the broader autistic community.

Elissa Green Kaustinen, director of the Families, Agencies and Schools Together (FAST) program at the CHOC Thompson Autism Center, agrees: listening to the needs of people with autism both in school and in the workforce is a great first step toward actively enforcing inclusive practices. She adds that there is still a learning curve in our society, specifically in educational and business settings. “Teachers, business owners, and different professionals are afraid to do it wrong, not necessarily feeling like they have the right training . . . This fear of doing something wrong hinders being inclusive.”

In this time of unpredictability and transition as we move into and out of a pandemic, there have been both good and bad outcomes for people with autism. Kaustinen says that for those who “crave social feedback and interaction, isolation has really put people with autism into more of a depression.” With the removal of in-person structured activities, like school and work, there have been fewer opportunities to interact with others — for kids, this is particularly challenging, as school provides an environment in which they know and understand what to expect. On the flip side, she says, “Some thrive, as we’re not having to navigate social pressures. We’ve taken away those spaces that made people anxious and feel like they have to fit in a box.”

As we transition out of the pandemic, Kaustinen says, we should do so together. “We’re all one, we’re all part of society. I feel that California is behind in inclusive practices, and the pandemic reinforced that.”

Another challenge Kaustinen has seen parents face, especially during the pandemic, is a lack of support, which affects our mental health. Many families lost their village of support. Still, as hard as it is, it’s essential that we make time to take care of ourselves. “If you’re not in the right space, you’re not going to be able to help your child,” Kaustinen says. In this clip, she explains how focusing on each individual’s strengths can help parents, teachers, and employers better understand and support people with autism.

As parents, we want our children to be happy and carry out their lives feeling capable and accomplished. With ASAN as an inspiration and resource, we’ve listed a few areas in which we can work to better support both our neurodiverse and neurotypical communities.

• Advocating in school

  Inclusion: Kids learn best when surrounded by their peers. Separating non-disabled and disabled children only widens the gap of understanding and learning. Advocating for more inclusive practices in classrooms leads to inclusivity in the workforce, housing communities, and everyday life.

  Supports: For inclusion to truly work, our children need to be supported in classrooms with accommodations and services that allow them to access classroom material in a variety of ways. Teachings that follow Universal Design for Learning (UDL) make students feel comfortable, welcome, and valued along with their peers.

• Support in the workforce

  Job coaching: Job coaching can help people with autism prepare for job interviews and life in the workforce. With valuable resources like interview practice and resume writing, people with autism can be better prepared to enter the workforce.

  Accommodations: As explained by ASAN, “Once we get a job, we may need accommodations like a daily work agenda with visuals, a consistent job schedule, or someone to help us with our job throughout the day.”

• Housing and everyday responsibilities

  Housing support: As ASAN says, people with autism “have specific needs when it comes to getting housing. We may be sensitive to certain sounds or lighting, need help doing tasks around the house, need assistive technology in the house to help us, or have other support needs.” Accessible and inclusive housing will aid people with disabilities when transitioning to adult communities.

• Research and health care

  Supportive research: Research that is focused on communication, community living, education, and health care for people with autism is what supports kids for their future. As Undivided parent Michelle Malewitz puts it, “There is nothing wrong with my child, he doesn’t need to be fixed, and he is not missing a piece. He is absolutely the same wonderful and amazing kid he was pre-diagnosis.”

  Understanding autism: The more we understand about autism, the more accurate help and support our doctors and teachers can provide.