(Originally posted in 2019 - edited to adjust age, but this is the number one question I get asked the most...and often.)
Dear Addie,
It’s no secret that this journey was something we had never “planned”, but here we are - now 13 years in. It’s said we never stop learning throughout our lives and I’d like to think we, this dream team are living proof of that! We are learning new things every- single -day. All of 5 of us. With a first-class ticket in this educational journey, we have vowed a life of advocacy for not only you but for others who have also found themselves in Holland rather than let's say drinking wine in Rome. Ooh la la! (Guess what, there’s wine in Holland too ;)).
With this life, we chose complete transparency and that came from a place I found myself in when I first read an evaluation of you with the words “suspected autism spectrum disorder.”
I had no idea what autism was or knew anyone with special needs for that matter. My mind had a vision of autism that I’d be embarrassed to tell anyone about today. I was completely uneducated on this. Yep, that was me - your mother.
Don’t get me wrong I had perhaps seen individuals who I know now more than likely had autism, and I never made fun of or bullied anyone, EVER, but I also never took the time to understand them or try to educate myself. My young self thought like most - this didn’t directly affect me.
My loss.
Fast forward to life today and the number one question I get from people is “when did you know?”
The question I’m sure is always in reference to your autism and not when did we know your hair was going to be brown instead of red, but I digress...
If I’m being honest, the answer is, well, never - on our own anyway. It wasn’t until after many evaluations did someone tell us this was in fact what was going on and explained it in a little greater detail. I didn’t know what autism was. But I did however know you were uniquely different the moment I met you.
Allow me to explain.
We sat in a routine 18-Month well visit for you, and after filling out some milestone charts, we were suddenly being referred for further evaluations.
Wait, what was going on? Why?
I didn’t understand why not talking was a “red flag.” I mean have you met your brother and sister? They never stop talking! In fact, they are usually talking over each other! You probably just couldn’t get a word in if you tried! No problem here! Right?!
Clearly, that’s not how language works Addie.
I remember leaving confused thinking how did I miss this? This was my most important job - mom, and somehow I felt like I had failed. Insert all sorts of guilt of what I probably had done wrong or what I missed.
We went on to complete the evaluations and the moment I read the report is literally seared into my memory.
I remember reading those words: “suspected autism spectrum disorder” and being angry and somehow initially felt we had just wasted our time! Now I wasn’t angry at you Addie, I was angry that I didn’t understand. I am your mother, I’m supposed to know you best. But here was this well-educated woman who did a pretty amazing and insanely thorough evaluation of you, and had identified areas of development that were in fact deficient to the “norms” of kids your age. And then, staring me in the face was this somewhat potent term of your suspected diagnosis, penned in black and white. It caught me off guard I guess.
She was saying you, my child was indeed different and I wasn’t prepared to hear it. If I’m being truthful, I guess somewhere deep down I already knew in my heart this was the truth, she just had a name for it.
Sensory processing disorder, severe speech delay, severely below age-expected limits, suspected autism spectrum disorder...the list went on. It was all so much to take in.
I remember thinking, Autism? Wait...what?! That can’t be right? I mean I know you didn’t cry when you were born, you were always shockingly awake for a newborn, sure you were quiet, had a unique way of getting your needs met on your own, intricately played with your toys in a pattern for only 30 seconds at a time, you seem to get upset at gymnasiums, restaurants or sterile bright lite offices, reacted to certain low toned sounds like nails on a chalkboard, never - and I mean never slept, but surely that wasn’t autism?! Was it?
Then I got sad. The more I thought about it, the more I realized that you somehow didn’t “need” me as your siblings did. I mean, you needed me for food, diaper changes, baths, etc., but it was just - different. You never stood in front of me with your little arms and chubby fingers stretched high insinuating you wanted to be held, to be comforted. You were content on your own. Was this autism?
My mind swirled out of control.
You see Ad when a once younger, pre-kid version of myself thought of my life with kids, it was a beautifully perfect vision (of course everyone's is right?!) It had all of you growing up, getting jobs, and having families - none of it, not one second of that vision included autism. Why would I ever think it would?
Therapy, sensory diets, special education, speech, and potty training still at 8 (now 13), wasn’t prepared for any of this - I literally had zero experience. I was angry because I was uneducated and felt insanely lost on what to do. I, me, your mother was supposed to take care of you, and I simply didn’t know how now. I went from angry to accepting and terrified within the hour.
It was emotional chaos.
When you get a diagnosis in something that changes the trajectory in which you thought your life was going, it’s like you see your life lived flash before you in a matter of seconds - looking for everything along the way you think you should’ve seen or missed. But then, as it should, the flashing stops, and here stands you, my sweet girl, the same girl as before I read those words, the same girl you were always intended to be, our tour guide through a life we didn’t know or understand yet with this joyous, infectious smile.
Those words of “suspected autism spectrum disorder” prepared me more than I knew a year later for your official diagnosis. Somehow I felt lucky that we had had this glimpse into our future and a year's worth of education.
So back to the question “when did we know?”
Well in the thick of parenting you in your baby and toddler years I simply didn’t know what autism was. It’s only been through the life lived and education after your diagnosis that I now know. You were (and are) indeed uniquely different, and maybe that difference has an actual name.
I love you baby girl.
Mom