What I Learned From My Son’s Autism Diagnosis
Receiving an Autism diagnosis for your child is akin to having the wind knocked out of you. “Did that just happen?” “Are we going to be ok?” “What just happened?”
If your child receives an Autism diagnosis, YES, you are all going to be ok. It can be shocking to find out that the life you envisioned for your child is perhaps not the life they will live. The great news is that many Autistics live fulfilling lives and have successful careers and families! I am only four years into our Autism journey, yet I have learned a wealth of information in those four short years.
I knew something wasn’t right at 18 months when my son was not yet talking like his older brother. He had a few words at one year, but they all disappeared as month by month passed. Our first doctor brushed us off, telling me second borns talk later- and he’s a boy! I signed him up for speech therapy anyway. The therapist told me he is still so young and will likely be fine! True, he is fine, albeit autistic. The mama bear in me knew to keep searching for help, so I sought a third opinion from a doctor who recommended a child psychiatrist evaluation and early intervention. Finally, I thought I could help my son. This doctor gave me the best advice I’ve ever received on my Autism journey- that my son will do just fine because he has a great mama bear advocate.
The past four years have been anything but easy. I didn’t have any personal experience with Autism, so I voraciously devoured book after book and website after website, hoping to find answers. What I found years into my journey were many actually autistic adults living fulfilling and successful lives who had learned to find accommodations and thrive in society. Below are a few top tips I wish I had known at the beginning of my journey.
Look on the Bright Side of Autism
One thing that immensely helped in my journey is looking at Autism not as a death sentence but as something that makes my son special. It certainly didn’t feel that way when he was two and couldn’t show me anything he needed. But now that I view his brain as neurodivergent- thinking differently than others- I appreciate how unique his mind is and celebrate how it works. Instead of making him “play appropriately,” I try to enter his world and be with him.
Seek Out Underlying Medical Conditions
We found out that my son has an underlying condition creating more severe characteristics of Autism. Treating an underlying medical condition doesn’t ‘cure’ Autism, but it helps my son live his best life when he’s at his healthiest. A few different medical conditions and comorbidities that mimic Autism are PANDAS, PANS, Williams Syndrome, Fragile X, Lead Poisoning, ADHD/ADD, seizures, and gastrointestinal issues.
Connect With Other Autism Moms
I’ve made some great friends along the way in the Autism community. Finding your tribe is even more critical when your child is autistic- only other moms with autistic children understand your unique challenges. I have a group of moms that I text anytime I need support, have a bad day, want to share a win, or ask for advice. Even though we rarely see each other face-to-face, having other moms’ support when I need it enables me to be a better mom to my children.
Be Their Best Advocate
Sometimes, you have to throw caution to the wind regarding ‘experts’ advice and listen to your mama instincts. Speak up at doctors’ appointments, armed with research, questions, and suggestions. When it comes to IEP meetings, don’t sit there passively; offer solutions for your child and be prepared to speak up if something doesn’t sit well. When a social worker commented that my son played well next to kids but still didn’t play appropriately with toys, I asked curiously, “what does that mean exactly?” We could shift what the school thought was an important goal to something less subjective and more academic- such as learning ABCs.
What’s wrong with lining up your toys or pretending a rock is a person? Making sure to advocate your child’s neurodivergence helps lessen the ableist attitudes (favoring able-bodied people) you may encounter. I’ve found a friendly way to advocate with teachers, therapists, and strangers are telling them that “I”m helping my son/daughter live his/her best life,” and I thank them for wanting to help my child.
Stay Calm- Behavior is a Form of Communication
I have developed an excessive amount of patience once I learned that all behavior is a form of communication. All children, primarily nonverbal or speech delayed, communicate with behavior. It isn’t the child misbehaving; instead, they are trying to connect and tell you something. Self-care, deep breaths, prayer/meditation, and remembering no phase lasts forever help to stay calm while in the trenches.
Read Inspiring Stories From Autistics
I love reading biographies from actually autistics. There are so many out there! A few of my favorites include Scholars with Autism Achieving Dreams, The Reason I Jump, Different- Not Less, Ido in Autismland, and Life Animated. When you feel overwhelmed and pessimistic about the future, pick up one of these books and let your heart be inspired.
My son is six and still primarily nonverbal, yet that doesn’t keep me from dreaming big for him. I want him to explore the world in his own time, at his own pace. With a bit of love, time and encouragement, I am happy to report that my son toilet trained himself over the past year- something years of early education public school and private therapies couldn’t do. He blows out his candles on his cake- years of therapy couldn’t get him to blow air, but having his siblings sing him happy birthday gave him the motivation he needed to go for it. I’ve learned to assume competence, and everything happens in its own time. My son now shows us everything he needs and wants and plays beautifully with his four neurotypical siblings. One goal that has been on his IEP for years is throwing and catching a ball. It turns out he will catch a ball and throw it for mama! We celebrate the little things, which end up being the big things. No dream is too big, and no dreamer is too small to accomplish great things.