The Advice I Didn't Know I Needed After An Autism Diagnosis
Throughout your lifetime, you will receive words of encouragement that really linger. There will be advice you cherish and take to the grave with you, and advice you will hear and reciprocate with a smile and nod while privately thinking, That is complete horseshit.
One of the worst pieces of advice I received was from my grandmother in third grade. I had earned my way into the final round of the spelling bee competition for our grade, and my grandmother had called the night prior to offer a pep talk. “Just remember Kelli, spell it out like it sounds.” Sure, that sounded like solid guidance. The next day of the competition, it was down to just two of us, and I was given the word “anxious.” I started with a, n, and then I paused. I could hear sweet little Grandma’s voice chime in, so I finished with “c, h, i, o, u, s.” Looking back, I don’t think I could have been saved from that spelling catastrophe even sans advice, but the fact I thought about her words during that moment is significant.
Three years have passed since I had suspected my son was on the autism spectrum. That initial instinct was followed by a diagnosis five months later, not to my surprise. The first week I acknowledged that my baby boy was on the spectrum was the most difficult, emotional, and dispirited time I have ever endured in my semi-short lifetime. I was a ticking time bomb of despair, as I was grieving for my son and the challenges that lay ahead.
I cried in the shower, I cried on my way to the grocery store, and I cried when I attempted to vocalize the word “autism” to family and friends. I was grieving for my son, but I was also selfishly weeping for myself and the superficial vision I had held for our family. Soccer games, birthday parties, prom, and sleepovers with friends. Instead, my clichéd fantasy was exchanged for doubts about my son’s ability to sustain an independent life. I wasn’t strong enough to be the mother he needed.
At the time, I was completely overwhelmed by trying to understand autism. Instead of working, I would troll Google consuming all things autism. I checked out a stack of books at the library and leafed through them when the twins went to bed at night. I was desperate and isolated, and I felt like I was marooned on an island where others could only extend sympathy rather than empathy. Now I realize the sense of alienation was all self-imposed. I suck at expressing my feelings. My husband can attest to this, as he wasn’t sure if I even liked him the first six months we were dating. I always think of the right thing to say a few hours after the conversation has passed. It may be a Capricorn thing. Or an introvert thing. Or my thing.
While I was immersed in my autism grief, I had reached out to my immediate family and our closest friends to express my concerns. The support I received completely revitalized me to persevere and move forward. A lot didn’t resonate then because my devastation and lack of autism-education clouded a lot of their input. But there are still several words of advice that still hold true to today.
You know your son better than anyone does.
A dear husband and wife duo I have known for nearly 20 years offered to sit down with my husband and me during those early first few weeks. They have a highly functioning son on the spectrum so they had walked in our shoes and were open to sharing their experience with us. Although they had an overabundance of knowledge, this one stuck.
You know the phrase “If you have met one child with autism, then you have met one child autism”? Autism isn’t a cookie-cutter disorder where it looks the same in every person, thus the “spectrum” in autism spectrum. Every child has their strengths and weaknesses, so cookie-cutter solutions aren’t going to cut it.
The advice may seem trite, but it’s my mantra to live by — for all my children, atypical or not. As a parent, you spend the most time with your child. Not the doctor who saw your child for 15 minutes and claims he will never be verbal. Or the teacher who decides your daughter isn’t diploma-bound. Or the occupational therapist who insists on four therapies a week to improve your son’s ability to use scissors. While there are brilliant professionals in the field, it is impossible for them to predict the full potential of any child.
The difference between you and them is the love you have for your child. Don’t be afraid to speak up. Fire the ABA therapist who just can’t capture the engagement of your child because they lack enthusiasm. Hire a different speech pathologist when yours claims your son has tongue-tie (he didn’t — at all). Time is too valuable to waste. So is money. You are your child’s best advocate, so kick some ass, take names, and don’t be apologetic about it.
This won’t change who he is as a person.
Moms always pull through with authentic, sound advice when you need it most. After I hit up Google and read a checklist of autism signs in young children, I called my mother hysterically crying. Because I knew. Coincidentally, she had suspected the same.
In the midst of my meltdown, I still remember this statement. I deflected it then because I was so caught up in looking for validation and next steps. I saw a Scarlett A on his chest accompanied by all the obstacles ahead. Autism almost took prevalence over his character because I was engrossed in advocating for him all day, everyday. I was knee deep dealing with health insurance and therapists and developing strategies for early intervention. Yet autism is not his identity. My son was 13 months at the time, and his personality was a blend of many traits — sweet, short-tempered, cheerful, and stubborn. He still has all of these qualities, and so much more. He’s hilarious, affectionate, smart, empathetic, and a loving brother.
A diagnosis may explain some of your child quirks and can let you move forward with interventions, but don’t let it distract you from the core of who your child is.
I’m sure everything will be just fine.
Translation: You are overreacting. Man, I hated this response at the time. The cynic in me found this to be insulting, as if I was fabricating the red flags like his absence to imitate and obsession with spinning anything with an axle. Like these were typical behaviors. Like I didn’t know my child.
So this isn’t really great advice at all, but it taught me about human nature and the innate desire for bliss and avoidance of conflict. People are sensitive to other people’s feelings. I mean, who is really intentionally looking to crush people’s souls? As a whole, the general public also doesn’t possess a lot of knowledge about autism to substantiate your concerns. This is equivalent to a computer programmer asking me to review his code for errors. “Uh, sure, that code line looks just fine, Frank.” It’s almost like a verbal pat on the back.
People’s hearts are in the right place. I had perceived the “everything is fine” response as denial and negligence rather than the affirmation I was so badly seeking. Looking back, I should have chilled the eff out, mentally forgiven them, and welcomed the support.
Find and lean on your village.
I read this specifically in a handout from Infants and Toddlers, and subsequent sources that followed. I made a deliberate effort those first few months to network with parents of children on the spectrum, including local autism support groups and county mentorship programs. But I found the most significant relationships were built organically.
When my son was enrolled in a therapeutic day program at age 2, I would drop him off for several hours and wait in the lobby of the building until it ended. A handful of other caregivers would do the same — mothers, nannies, grandparents, and the occasional father. This diverse group developed a camaraderie, chatting about anything ranging from dating disasters, parenting, dieting woes, and our overall highs and lows. Of course we all had the one common link — we cared for someone on the autism spectrum. Not only did we bitch about our employers or family dynamics, but we also complained about how health insurance screwed us over, the speech pathologist was an incompetent moron, and Little Bobby had a 30-minute meltdown and refused to come to school. And this group understood.
Be selective about who you let into your tribe. Life is too short to be poisoned by toxic relationships, including both family and “friends.” Autism is a nice tie that bonds, but don’t hold on to a friendship because of it. If you want to drop an eff-bomb or drink a dirty martini without being judged, do you and befriend those who won’t flinch when your house is in shambles. Special needs mamas are tenacious and ambitious, but also tired. Utilize that grit and find your village who will lift you when you crash and listen to you when you need to vent.
You will have good and bad days.
A friend recommended I speak to a woman in her network who had the reputation of a legit “warrior mom,” who had advocated ferociously for her middle-schooler on the spectrum.
I was a couple months into recognizing my son’s autism. I had emotionally went through the grieving stages and was actively seeking intervention services, so I had called to pick her brain for local resources. After conveying to her that I was doing “good” and hadn’t cried in months, she set me straight with this advice. It was a good “listen lady, you aren’t out of the woods yet.”
The earlier days were much harder than the latter, but I still can throw down a good cry every now and then. When I (1 week postpartum) put my son on the school bus at the tender age of 3, I was a mess. His sweet face looking at me through the window as the bus pulled away triggered me every time. When he threw a toy for the 148th time in one day, I cried from the frustration of him not being able to play appropriately. When we were on week 4 of the feeding clinic, and although he was making progress, I would break down because a 2-year-old shouldn’t have to endure this.
But there is so much good, especially now, and I acknowledge how fortunate I am. I feel guilty admitting it because not every child progresses at the same speed to hit their goals. My son has come a long way, and I proudly celebrate our triumphs. The autism crusade is endless, and you need that satisfying resurgence.
To the mom who recently received a diagnosis and is struggling to cope, I see you. The vision I held for my family, but was erased years ago has been revived. Soccer games, birthday parties, prom, and sleepovers with friends — that all can happen and so much more. It has for us. Friendships with classmates, being his sister’s best friend, expressions of love — the bonds that make life truly fulfilling.
You will emerge from the fog. You will receive poor advice from doctors, specialists, and loved ones. You will wonder, Why me? Your patience will be tested through boundaries that were previously unknown. You will question your own resilience.
While you are learning to navigate this new world, don’t lose sight of the love you have for your child. As simple as it may be, that unconditional love is all they need from you right now.
