Many parents and family members of newly diagnosed autistic individuals find themselves overwhelmed in a sea of information. A neuropsychologist might hand over a packet bulging with materials, or Googling “autism” will turn up thousands of sites. Finding accurate, helpful information isn’t always easy, but as you decide where to turn your attention, it is critically important to listen to autistic voices.
The saying “nothing about us without us” is common in the autistic community and the disability community more broadly. But rather than allowing this idea to become a platitude, it’s important to really think about the key reasons why paying attention to autistic perspectives directly should be a fundamental part of learning about and understanding autism.
- Preventing Assumptions. Your autistic family member may not be able to articulate exactly what they are feeling or they may not yet understand it themselves, especially if they are very young. Instead of making assumptions, listening to other autistic voices can provide an invaluable window into a loved one’s experience. The more you familiarize yourself with the wide range of autistic experiences, the better chance of finding perspectives that might resonate. Then check with your family member: Is this what it is like for you or is it different? Giving them something to use in comparison, but providing them the opportunity to think about and express their own experience may be a helpful place to begin to improve their understanding as well as yours.
- Creating the Habit of True Listening. Our society maintains a lot of expectations about the accomplishments a person should achieve and when it should happen. It becomes automatic to presume that everyone not only should do certain things at a particular time (like learning to drive or finding a career as soon as possible), but also wants to do these things in that time frame. It is easy for parents and caregivers to reflexively project these expectations on their autistic family member without ever considering the autistic person may want or need to follow a different path. Listening to autistic perspectives from the very beginning creates a culture of listening and prioritized empowerment and self-advocacy.
Here’s what some of AANE neurodivergent group leaders and clinicians had to say on why it is important to listen to autistic voices:
“Have you ever been to the doctor with an early on sinus infection, and been told it’s just a cold and sent home? Pretty frustrating, especially when you have to go back a week later and have the doctor give you antibiotics because they were wrong. If you have had any experience similar to this, you already understand why it’s important to listen to autistic folks — because every person is an expert in one thing: themselves. In our society, we hold scholarship and academic knowledge up on a pedestal, and often forget the value of personal testimony and experience.
A neurotypical (if such a thing exists) doctor could explain that an autistic person might experience sensory sensitivities, but can’t tell you what it feels like to experience sensory overload. A neurotypical psychiatrist can’t explain to you the feeling that your autistic child/friend/coworker/employee/patient has when they WANT so badly to just do the thing, but something immovable is in the way. A neurotypical neuropsychologist cannot explain to you the feeling of whole-body calm when engaging with a passion or interest, or the energetic release an autistic person gets from stimming.
Seeking autistic voices and utilizing the power of the #ActuallyAutistic community has helped me understand autistic perspectives on life, love, therapies, interventions, social interaction, and more. It has deepened my understanding of my students and my clients, as well as the world around me. It is deeply important for ALL people to have a working knowledge of neurodiversity as explained by neurodivergent people. No matter who you are, whether you know it or not, you’re interacting with autistic and neurodivergent folks every day. The more that people understand that all brains work differently from one another, the easier time we will all have living our lives.”
–Maggie Bowlby, Senior Manager of Individual and Family Services
“For me, I feel really passionate about helping have a voice for autistic people, especially autistic females, to simply say that autism can look like this today, and it could look very different for me tomorrow. That’s the part that’s really difficult for people to understand because there’s been the stigma for so long.
I’m so proud to be a part of the community. When I got my diagnosis, it was a relief. It was an opportunity for me to stop and take a breath and say, ‘Oh, my gosh! All of this stuff that I’ve been feeling my whole life. Nothing’s wrong with me. This is actually just how I was interpreting the world around me.’ But I recognized that I didn’t have another autistic adult to turn to, and what thrills me is being able to be that person for others.
I’m very happy to open eyes, hearts, and minds to what the spectrum really looks like. I think it’s critical for people to hear our voice. When I was finally able to talk with other individuals who are autistic, I learned more in those ninety minute sessions with somebody that I ever could have learned in a pamphlet or a book. I mean to hear somebody say something that resonates so deep inside of you, and you’ve never even known that that was a thing or recognized it, and didn’t have the words but somebody else does – that connection, when you felt completely isolated and lonely your entire life – it’s a moment. It really is, and it’s life changing.
Now, to me it’s a gift to be able to help people navigate so that they don’t end up in burnout. From my own experience, I can explain to a parent why – yes, structure is important and great, but we have to remember to loosen the reins. If there’s a bad day, then don’t go to practice. Everything is going to be okay. Those perspectives aren’t understood, unless people can speak about them. That’s why I think the autistic voice is really critical, and particularly for parents, because the only way this is going to change is if we can open our minds and our hearts to that and honor the space for your child to feel like they can even talk to you.”
–Jenna O’Donnell, Information & Resource Specialist
Read first-person accounts from AANE autistic community members, and check out some of these sources for other autistic voices:
- Find content on social media channels tagged: #ActuallyAutistic
- Start Here: A Guide for Parents of Autistic Kids, by Autistic Self Advocacy Network
- Sincerely, Your Autistic Child, by Autistic Women and Nonbinary Network
- Spectrum Women: Walking to the Beat of Autism, Barb Cook and Dr. Michelle Garnett, Editors
- “Jean’s Adult Diagnosis Story,” by Jean Winegardner
- “The Autism Checklist of Doom,” by Shannon Rosa and Autistic Science Person
More reflections on listening to autistic voices: