You’ll find several mentions on this website about the importance of prioritizing autistic individuals in the conversation about autism. But, like anyone, not all autistic people think and believe the same things, so why is this consultation useful? Is it necessary? Is it enough to steadfastly follow the advice of your child’s doctors and therapists? If you think this is enough, you’ll be missing the best piece of the picture to understanding autism (Notice I’m deliberately not using a puzzle piece analogy here for reasons described in this post.). And while it’s important for people to understand that people on spectrum do NOT exist solely to educate others about autism, there are nevertheless numerous autistics willing to share their knowledge in the hopes of better informing families and society about autism (and some make their living doing so). They write and speak regularly about their experiences.
Below are 10 reasons why you should engage with autistic individuals and include them in the conversation about autism (identifying symptoms, useful therapies, supports, describing personal experiences, and how it should be addressed in society).
10 Reasons You Should Consult Autistic People
1. Many of the autism experts have not lived the autistic experience.
Doctors and therapists gather knowledge from studying research and observing the behavior of people on the spectrum. But neurotypical medical experts have an incomplete perspective to understanding autism. They make their best judgements and offer advice based on their observations, but they can never know what it’s like to live the daily life as an autistic individual.
2. Humility leads to wisdom.
In general, it’s good to acknowledge that you don’t have all the answers. If you’re open to learning something new when you engage with autistic individuals, you are bound to enhance your understanding of autism.
3. It enhances the empathy you feel for your child.
Learning more about what your child, relative, or community member experiences helps you empathize with them and improves your understanding of autism and the ways they are affected by it.
4. It creates better societal supports and accommodations.
Learning more about the autistic perspective leads to more empathy, and, in turn, leads to better supports and accommodations resulting from more people better understanding autism and how it is manifested in their homes and society.
5. It demonstrates your respect for people on the spectrum.
It’s impossible to say that you respect autistic people if you don’t believe that their opinions and beliefs are important and worth hearing. An openness to learning from autistic people demonstrates a respect for the humanity and authority of people on the spectrum, an attitude and behavior worth modeling for your children (both on and off the spectrum).
6. It offers connections for your children.
Your engagement with autistic people may reveal opportunities for your children to connect with other autistic peers and mentors, people who they may be able to identify with.
7. It is inaccurate and damaging to assume a viewpoint is misguided because it comes from an autistic person.
Besides being wrong and unhelpful, this view is also dismissive to the humanity of the person on the spectrum.
8. Simply put, it’s a useful channel to pursue– for “Warrior” parents especially.
Autistic expertise is a useful channel to pursue, one that “warrior” parents should consider. Although I dislike the term “warrior” parents because of the implications it suggests about fighting autism and ridding all traces of it from society, the idea of a supportive parent who is willing to advocate for the needs of a child at all costs is a welcome alternative definition. When I think of “warrior” parents, I think of people who are willing to exhaust every channel to find the resources their children need to develop. Hearing from autistics is one of those channels.
9. Autistic people are valuable assets to society.
Many great thinkers of this world are thought to have been on the autism spectrum (some are discussed in Steve Silberman’s Neurotribes). Out of the box thinking leads to innovation. By shutting these people out of the conversation about autism, our society is missing a valuable asset to progress.
10. Understanding autism helps inform you of the role you play in the lives of others on the spectrum.
As a member of the dominant neurology, it is important to learn how your privilege impacts others. Understanding autism by consulting with people on the spectrum will help you acknowledge your role in supporting minority neurologies.
Can you think of others?