Last Wednesday we had our toddler tested for autism. At barely two years old, he received a definitively diagnosed with autism. It is like everything has changed, yet nothing has changed. Our day-to-day is no different. There are triumphs: Big A said “choo-choo” and signed “train” Sunday. There’s still a lot of screaming. Our sleep is no better, no worse. The voice in my head is little no longer, is all. Yet. The fear is different. More concrete. I know what to fixate on now: our toddler’s autism diagnosis.
Right now, something I can do (besides lean into obtaining therapy for Big A with the fervency of the recently converted) is dissect through writing. I can describe the mechanics of the appointment. How I feel. I can hold these feelings outside myself and examine them.
Lack of Material
I didn’t know what to expect when we went to Big A’s diagnostic appointment. I couldn’t find much information about toddlers as young as Big A being tested for autism. I also had a hard time finding perspectives from complete newbs. That’s fine, Internet. I’ll help fill the hole myself.
We had a 9 am diagnostic appointment at a children’s hospital. We were hopeful to discover what was going on with Big A. He is preverbal (I used to say nonverbal) and he presents physical behaviors which seem rather…stimm-y. Before the test we explored a giant Ulta, ate sushi and had Big A’s first hotel stay.
It’s a long appointment. I feel bad for anyone who has a shitty boss, mad at them for taking a full day off. Or the people who go alone, literally or metaphorically. The autism testing took 3 to 4 hours, filled with interviews and activities. Big A worked so hard during the screening. He was asked to put together puzzles, make eye contact, eat snacks, display anticipation traits, imitate behaviors, engage, problem solve, and color. By noon the kind clinician (who had to interrupt our interview to go film a video of him receiving a Doctor Of The Year award) looked us straight in the face and stated, “I have absolutely no doubt in my mind that your son is autistic.”
Josh and I tried not to cry as the doctor outlined the reasons behind his diagnosis. The experts pointed out how Big A didn’t engage with individuals, but objects; that while he would make eye contact, it was not sustained. This only highlighted the social differences between him and his little brother. Big A’s strengths were numerated as well. They loved that he displays communicative intent through signing. He engaged with the tester for “more” bubbles and he showed he can be redirected to the next activity. Big A’s blood was taken (he was a champ) to test if the cause of his autism is inheritable. Award-winning Doctor prescribed even more therapies for Big A: working up to twenty hours of ABA therapy (applied behavior analysis therapy) a week and occupational therapy. We are to continue speech therapy and signing.
What I’ve Learned From Having My Toddler Tested for Autism
- Bring a separate ‘carry-on’ bag for the appointment filled with snacks, toys, diapers, etc.
- Double-check the paperwork to make sure you know exactly where the appointment will be. We learned the hard way that the children’s hospital had other campuses at different addresses.
- Embrace the chaos.
- Prepare for all the meltdowns. The whole process messes with schedules and routines. If your possibly autistic toddler is anything like Big A, it’s going to be hard for them. And for you.
- Make a checklist outlining your child’s strengths, developmental delays and social history. Make a list of your concerns and observations. They have so many questions, even the roughest outline will help you answer.
- Check with staff about who is allowed to be present for testing. Can siblings come?
- Take everything they will give you. We agreed to have Little A scanned with an MRI machine to check his brain structures for reeaaaly early signs of autism and to have our DNA taken to see if we were carrying any genetic markers for autism. We also scheduled follow up appointments every 6 to 8 weeks.
- Inform with expectations. I made an Instagram post about Big A’s diagnosis that included a list of expectations and boundaries I had about sharing this news. I made that post because I knew that some of the reactions I was describing are common. Hell, they’re things I probably would have done before this happened. And I knew that if I were to be on the receiving end of that I would not react well. It is better to warn than explode.
- Focus on your child’s limitations right out of the gate. I understand that it is likely a developmental delay that prompted this appointment. But it’s important to set the tone now of trotting out the positive first. There’s going to be years of dealing with the people and systems (ahem, public education) that will want to focus and penalize your child’s struggle to engage, stay in line, sit still, etc. Emulate Kris Jenner and get in front of the story.
- Try to step in and help your child during any of the testing process. You’ve worked hard to help your child compensate in areas they are testing. It’s hard to watch him struggle, but it’ll allow a better assessment.
- Be afraid to ask for help, whether it be to understand, for resources and support groups, or ways to reimburse your travel expenses for the heap of appointments in your future.
- Freak out too much about the schedule. Really. It’ll be fine in four days.
That’s what I know so far. Thank you for letting me get it off my chest. I think I’m ready for what’s to come. Do you have any experience with having your child diagnosed with autism? Let me know in the comments, dear reader. Share this article, knowledge dissemination is power.