The Diagnosis
I’ve had a lot of shitty days in my life, and this one was definitely on the top of the list. I knew my kid was different, partially because he was difficult. From the moment he came out of me he never slept. I can confidently say, I slept an average of 4 hours a night for the first 3.5 years of his life. It was rough. Anyway, at about 18 months, he wasn’t talking, and he was looking at me when I called his name- instinctively I knew something was wrong.
My Uncles wife had worked for Spectrum Services, a government lead therapy center for severely Autistic children in Upstate New York. She was around my son quite a bit and often insisted that I enroll him in “Early intervention” ( a State and County based program for children on the spectrum 6 months to 3 years old, you can do this without an official diagnosis). My mom on the other hand had contended that my son had hearing issues, so I chose to go down that path first.
After two hearing visits and a visit to one of New York State’s top ENT’s (I lost years off of my life getting him through these examinations lol), my son in fact, had zero hearing issues. So I swallowed my pride and scheduled an evaluation with Early Intervention.
It was 2021. We were in the midst of the pandemic and I was in New York State. Probably one of the worst situations to be in whilst trying to get your “possibly” Autistic toddler help. The evaluation was done online with five other County representatives that worked children’s health and children’s protective services. Noah was supposed to be present for the two hour video call (if you call playing in the background while I answered a thousand questions about how my child can’t do things, present). They determined that he needed 3 hours of Speech therapy and 3 hours of Occupational therapy split into three days a week sessions. Everything was done online, nothing was done in person. Imagine trying to get your toddler to stay still and focused on a computer screen for an entire hour listening to unenergized and unenthusiastic therapists coercing him to do things? It was the three most agonizing months full of zero productivity, tantrums, and sweat. At that point I knew I had to get him a professional diagnosis and then leave the State of New York to head south where everything was “open”.
In case you didn’t know; getting an Autism Diagnosis is extremely difficult-Its takes waitlists and it takes years. Most parents end up leaving it to the public school system to do the job, but sadly that can be too late, wasting the most important developmental years to truly make the difference for their children’s futures. Another thing to note is, only a specialist can give those diagnosis’,and those specialists are few and far between. Another thing to add: these evaluations have to be done in-person, and since it was the pandemic, that already slim list of specialists, was even slimmer.
There was a Behavioral Doctor outside of Albany, about an hour and twenty minutes North of me that was open, but he was very very full. Covid was unpredictable, and I knew there had to be cancelations, so I spent almost two months calling that very doctor’s office three times a day until finally, there was an appointment: February 22nd.
My husband (at the time), my son and I showed up to the appointment. My stomach was in knots and I was doing everything I could to not leave my body during his evaluation. The doctor had a deadpan face, was blunt, and had little to no change in his voice. My son got his Autism diagnosis.
I was hysterical. I cried on and off for a week feeling helpless; But I got over it and I packed my shit up and drove to Florida with my son to get him the help he needed.
3 hotel nights, 4 days, 21 hours of driving later we arrived in Miami. We went from gray dull freezing weather to warm Florida sunshine. I aged about 10 years getting there, but I kissed the ground when I arrived.