A Letter to Parents of Children With Autism, From an Autistic Adult
Dear parents of children on the autism spectrum,
I’m an adult who was diagnosed on the autism spectrum, and I’m one of the many autistic adults who would love to help you understand your children, if you will let us. There’s a lot of emotion surrounding autism and parenting in general, and I will be the first to admit I don’t have the perspective of a parent. But I do have the perspective of growing up as the weird kid who’s having a lot of difficulty with ordinary things.
I do a lot of reading both in the autistic community and parenting communities. I see a lot of vehemence from some of you about us not being like your children and often a rejection when we offer advice. I feel this is partly due to said advice being offered in a way that causes parents to feel attacked, as though their worthiness as a parent is under the microscope. Sometimes this is the case, as autistic adults can have a lot of built-up hurt from a lifetime of being treated in awful ways for their differences; it can leak out over emotional topics. Often it can be a matter of incorrect tone in conversation because autistic people can be blunt and we have trouble modulating this. However it may seem from the outside, we’re motivated to want the best for autistic children because they’re a part of our tribe, and how you treat autistic adults today is how your children will be treated by society in the future.
A common argument put forth to negate our input is that because we can communicate in ways you understand, we’re “high-functioning” and not worth listening to because our experience is so very different from your child’s experience.
I was diagnosed with Asperger’s syndrome (or ASD level 1 in the new DSM criteria). I had no speech delay, I was hyperlexic as a child, exceptionally bright in school and I’ve been identified as having a savant skill in art. However, even now as an adult there are things I struggle with — so much so that I can be considered “low-functioning” in those areas and rely on support to manage them.
Autism is such a mixed bag of strengths and weaknesses; each one of us is completely unique in the various functions that have been affected and challenges we face. If fate had cast the dice and my brain had wired slightly differently, my speech and various bodily processes may have been included in those lower-functioning areas.
Despite our varying abilities to pass as “normal” at a cursory glance, there are many areas in which we experience similarities to your children, and that facade of normalcy was hard won over our lifetime and breaks down easily. To maintain it can be an effort of monumental proportions that take up a lot of energy, often leading to mental health problems over time, as it has with me.
Please believe me when I say I understand many of your child’s difficulties. I have insight on the meltdowns and shutdowns, the self harm, stimming, aversions to touch and eye contact. I understand how they feel when nothing is making sense and everything is fear and anxiety. I know what it’s like living with sensory problems that can take away every coping mechanism I have in the blink of an eye. I understand being swept up in obsessive focus on topics/objects. I know the terror of feeling like social interaction will never make sense no matter how hard I try. I understand having emotions so intense that I can’t express them no matter how much I want to so I appear to lack empathy. I know what it’s like to miss the signs of someone feeling bad or angry and accidentally cause them more upset. I know how it feels to have a body that doesn’t work quite right with a lifetime of digestive problems. I understand the heartache of seeing family members struggling and hurting because I’m different.
Some parents wonder if their autistic kids love them because we often don’t show it in ways they understand, and for most of us the answer is a resounding “yes!” — with everything that we have in whatever ways our various abilities will let us. There are so many areas where parents are led to believe one thing, but we may feel entirely differently, and it breaks my heart to see parents and autistic people at odds when we both want the same thing. Yes, some of our views are confronting, but please at least think about them and try to understand why we may feel the way we do. Please let us help you in understanding your children — there’s a large community online of autistic adults from all parts of the spectrum out there who are articulate about their experiences, including those who are nonverbal who have found their voice through writing. A quick search for “autistic adult blogs” should start you on your journey.
Read our blogs, talk to us, let us in — we want acceptance, and we want to help you and your children.