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Although I am a clinician, I’m writing this as a parent of a kiddo on the spectrum. This topic weighs on me professionally, but more so personally.

As a professional, you may have tried to relate to a parent by saying, “I understand” at some point in your career. I’m sure as a parent you have heard this for the umpteenth time. Whether it’s from clinicians, educators, therapists, family, or friends, those dreaded words — “I understand,” eventually find their way out of someone’s mouth and land in the direction of a parent of a child with autism. “I understand” almost felt derogatory when a doctor, teacher, principal, or therapist would say it to me. Everything in me screamed, “There is no way you understand how exhausted I am.” “There is no way you keep yourself up all night worrying if your child will have to live in a group home or where he will end up when you’re gone.” “There is no way you understand this constant anxiety and difficulty focusing all day because you’re worried the school is going to call you to pick up your child… but you’re out of PTO.” The list of things that others don’t understand goes on.

At first, I used to let it roll off their tongue and smile and nod. However, as time went on, I had heard it enough that I began to stop a person from saying “I understand” unless it was coming from another caregiver of an autistic child.

When someone says they understand, I first ask a question back: “Do you have children?” If they answer “yes,” I follow up with, “Do they have autism, too?” If they answer “no,” I follow up with this sentiment, “I appreciate you trying to relate, but unless you have lived it there is no understanding.” I say it all the time to fellow clinicians, care staff, educators, and sometimes even friends. There is not a fine line between working with individuals with autism and living it 24/7 as a caretaker. The line is big and bold. There are things we can all relate to as part of being human. However, the old saying about not knowing what a person is going through until you have walked in their shoes is true. There is never a full level of understanding—but there can be a full level of compassion and support.

Even with the families and caretakers I encounter, I may be able to relate but can never fully understand their life. As a professional with a child with autism, our experiences are still different.

Let’s work together to try to do better in building our families up. Rather than saying “I understand,” a simple acknowledgement of how hard it might be can go a long way. Tell them you are there to help in any way you can. Listen carefully to their perspectives and insights. Heck, compliment a parent or caregiver on what a great job they are doing.

Parents, guardians, and caretakers: don’t be afraid to let a person know when they are crossing that “I understand” line. Your voice deserves to be heard. I may not fully understand your experience, but you are not alone, and you are doing a great job.

The Autism Society of North Carolina’s Clinical Department offers direct services including ABA, consultation, social connections groups, and more.  Visit our Clinical Services page for more information.