April 20 will mark two years since Isla was diagnosed with autism. I will never forget that beautiful spring day we spent trapped in a window-less room as two psychologists asked a million questions and performed the ADOS diagnostic test. Sitting there silently and not being able to coach her through or reword the prompt in a way I knew she would understand was one of the hardest things. I remember leaving that day feeling a strange combination of vindication and helplessness. It set into motion a path for our life that was so unfamiliar and seemed impassable. “I don’t want to do this,” I remember thinking, “Autism is dumb.”
Our life since then has been ABA therapy, adjusting expectations and managing autism. It’s also been spent educating ourselves. Autism is such a complicated diagnosis. While we as a society know so much more than we did even 10 years ago, the autism community is ever evolving and changing. As I learn more about what autism means for some families, I always find ours in this weird limbo between neurotypical and autism. Two years in and this feeling hasn’t changed one bit, so I guess this will be our life long balance to strike.
In a weird way, it feels like a bit of privilege we have that other autism families don’t. We don’t typically have to disclose her diagnosis to every swim/dance/soccer/art teacher. We don’t generally deal with strange looks or comments. Because of her high functioning label, Isla can mostly float through life undetected. Which presents a whole new set of struggles, because I’d never want to deny her autism or set the precedent that it’s something to be hidden, but on the flip side, I never want it to be a crutch.
This feeling has always left me thinking I can’t or shouldn’t discuss our experience with autism because on the whole, Isla experiences it so slightly. She is verbal, her self-help skills are mostly age appropriate, she doesn’t self-harm or require constant, vigilant attention. Discussing our struggles with the neurotypical community has always felt like raising awareness, while talking about it with the autism community has always felt like complaining. The wide range of the spectrum leads to a natural comparison, and just like with anything, comparing never feels good.Autism is dumb.
My issue lies in how autism is classified. The spectrum and three levels of severity put autism into nice, manageable packages for clinicians and psychologists to diagnose, society , and even parents just receiving the information. However, it does absolutely nothing for the people to whom these words apply. Autism is so complex and individualistic. I’d argue the mild, moderate and severe categories oversimplify and generalize autism.
Autism is so diverse among the members of the spectrum, it makes it impossible for the layman to understand. I am pretty familiar with autism, but I always hesitate to speak on it. After all, what do I really even know about autism other than my own personal experience with my daughter?
I don’t know what it’s like to have a child communicate with the help of a device. I don’t know what it’s like to go to feeding therapy because my child’s sensory issues are so severe it keeps her from eating. I don’t know what it’s like to have a child that runs away (also known as eloping) when their senses become overloaded. Yet, these are often the assumptions Isla is met with. But, I get it. It’s confusing that one person with autism could need those things and other doesn’t. Autism is dumb.
How is it possible that a verbal child and a nonverbal child can have the same thing? How can one child with autism grow up to be an independent adult capable of every typical responsibility, while another will require care their entire life? And then there is the terminology. Low functioning and high functioning- doesn’t that set some kind of expectation for these individuals in itself? Autism is dumb.
I’ve hesitated to even write this for so long. I’ve spent the last two years I’ve written about autism toeing the line and trying not to ruffle any feathers. There are now adults who were diagnosed as children and grew up receiving therapy and can now provide insight about their experiences to shape how someone like me parents. The #actuallyautistic movement has done so much to share their perspective which, as a parent, is so appreciated, but they also have very strong opinions about what should be shared and what should not. But, I stand by my opinion, Autism is dumb.
At any rate, autism is something we’ve learned to live with, but it will always be an evolving process. One thing I don’t think will ever change is that autism is dumb.
But not today. Today, autism is not dumb because today is World Autism Day. Today, autism is celebrated and talked about and for a minute it all feels like we’re playing by the same set of rules as everyone. I’m never going to understand everything about autism, or even understand everything about Isla, but I will always keep learning and figuring out ways to support her and the autism community.
If you love our shirts as much as we do, you’re in luck! We have added them to our Etsy shop! 10% of every purchase will be donated to the UC Davis MIND Institute. The MIND Institute is near and dear to my heart because they are committed to autism research for the sake of understanding, not curing. They truly care about the autism community and are committed to bettering their experience.
Thank you for your post. We have just entered this journey with my 2.5 yr old daughter, and a lot of what you said, is exactly how I feel. My daughter isn’t completely verbal yet, but is making leap and bounds to becoming so. She now can belt out “Let It Go!” along with Elsa. We send her to this wonderful preschool for autistic children, which has helped her in so many ways. I am so grateful for her teachers and therapists, but I continue to feel guilty talking to the other parents at the school because my Louise’s autism doesn’t look the same. I mean what is high functioning? It almost feels like an insult to her and others on the spectrum. She can’t fit in with kids with autism or those without. Autism is a label I want her to be proud of but not define her. Ugh, Autism is Dumb!
That sounds exactly like where I was when Isla was first diagnosed, down to the language and everything. You will find your footing, I promise. Thanks for reading!
Yes! My 4.5yo son is diagnosed ‘ASD Level 1’ – what does that even mean? For us it means that we just don’t fit and no one really understands us. It means on a good day we almost look like a ‘normal’ family. On a bad day, everything is hard. Even eating. Most days are somewhere in between. People say we are lucky it’s “not too bad” or “it could be worse”, or my personal favorite “I think we all have a little autism inside us”. These completely diminish the struggle my son faces every day. It ignores the fight we have as his parents to make his world a better place, more comfortable, livable. And yet as we sit in our therapy waiting room, I look at the other kiddos in my son’s social skills group and think we are lucky, it could be worse. Autism is part of our life, it is part of who my son is. But it is such a broad spectrum that saying someone has autism actually says little to nothing about what their daily challenges are. And it says nothing of their beautiful strengths, what they add to this world. I don’t even know where I am going with all of this other than to say yes, you are right, autism is dumb. The anxiety that social situations bring my son is dumb. The sensory issues that make walking through a crowd a nightmare are dumb. The label, the stigma, the lack of understanding is dumb. Because my beautiful, happy, funny, kind and intelligent boy is so not dumb. But few people get to see that, which is dumb.
Thank you for yet again voicing my feelings.
Yes to all of that! It has always been nothing short of a jumble of emotions, which I know pales in comparison to what our children feel.
I love that you shared this, this will resonate with so many families. I have seen many families struggle with their child’s autism diagnosis and I have realized that is not a one size fits diagnosis. You are an amazing mom!
It really isn’t one size fits all, which definitely makes it harder for parents to connect and cope. But support from empathetic people like you make it so much easier!
PunKin's Donuts says
Autism definitely has many variations to it. I wish more research and classifications were done to educate society. PS I love the message in your shirts!
Thank you! ❤️
Mary Leigh @ Live Well Play Together says
Thank you so much for sharing this! It is such a broad diagnosis and having not experienced it first hand – I can completely relate to what you said about not totally knowing what to expect or how to best be supportive.
Mostly, I just think your shirts capture it so well – different. Not less. And I’m thankful we live in a world full of people that are different. We have much to learn from one another. <3
Couldn’t have said it any better!