Today is WORLD AUTISM AWARENESS DAY so I thought I’d take a moment to answer a question I’m asked a lot.
How did you know Lennon had autism.
And at first, we didn’t.
When he was just over 1-year old we noticed things like (1) he was making very little eye contact (2) he wasn’t speaking (3) he played with toys in unusual ways & (4) he didn’t respond to his name.
While our doctor didn’t seem concerned, I pushed for some type of action. He obliged by giving me a referral to Nevada Early Intervention. This was in January of 2018 and Lennon was 15 months old. Honestly, I thought he was deaf and otherwise just delayed.
At our first early intervention appointment we (Kenny, Lennon and myself) sat in a room with two therapists. One engaged with Lennon while the other asked us questions. About an hour in and A VERY BIG BELL rang. Kenny and I nearly jumped out of our seats. Meanwhile, Lennon DIDN’T EVEN FLINCH.
His first audiology appointment came back inconclusive – he apparently had a double ear infection that he had been showing no symptoms for. We were prescribed a medication that Lennon (we soon found out) had no reaction to and a second that eventually took care of the infection. His second audiology appointment showed no issues with his hearing.
While it was clear that something was different the caseworkers weren’t comfortable calling it autism when he honestly didn’t respond or react to anything they did. We were in a bit of a catch -22. They moved forward with additional intervention services. At this point there was no diagnosis, but everyone knew – Lennon has autism.
He was assigned a Developmental Specialist, a Behavior Technician, a Speech Therapist, and an Occupational Therapist. I don’t remember the exact hours, but they came over … A LOT. They worked with me, they worked with him. Lots of hand-over-hand, lots of bubbles, and lots of crying.
While I appreciated the help, Lennon didn’t really seem to make much progress. It had been a year and Lennon was 2. For those of you unfamiliar with how the system works – it sometimes takes YEARS to receive a diagnosis and you lose early intervention services the day you turn 3.
I called around for an assessment and was added to waiting list after waiting list until finally I reached a place without a waiting list that accepted our insurance. The company was a disorganized mess, but eventually we had our appointments. One in their office that was part observation and a whole lot of questions for Kenny and I. The second was in our home, mostly observation. That was it, the Director of Psychological Services said they would draft a report and get back to us. This was November.
By January I had given up hope. I vented to Lennon’s early intervention team. I told them how scared I was that Lennon would turn 3 and receive no services because he had no diagnosis. From there they made a miracle happen and got me an appointment with their autism assessment team.
Randomly, in March, I received an email from the original place we went with Lennon’s official diagnosis. A few weeks later we received an official diagnosis from Nevada Early Intervention. And while the experience was very different at each place, the results were the same:
Autism Spectrum Disorder, with accompanying intellectual or language impairment. Social Communication requiring very substantial support. Restricted, Repetitive Behaviors requiring very substantial support.
I moved quickly and joined the ranks of countless other families on waiting lists for ABA (Applied Behavior Analysis) Therapy. Yet another thing that can take months to years to finally receive depending on where you live. Our Developmental Specialist had fortunately just met with a new practice in Las Vegas and said they currently had no wait list! We signed up immediately and by April or May Lennon was receiving 20 hours of ABA therapy a week (which has increased since then).
Now, thanks to COVID-19, we are doing telehealth – here’s a snapshot of one of our sessions.
We were very lucky. We got in early and things fell into place time and time again. We’ve been blessed with amazing individuals to help Lennon thrive. And not just his therapy team. He also receives individualized music instruction at home, dance class with other kids like him, and takes gymnastics. All of which will reconvene once things get back to normal after this pandemic.
For those of you interested in early signs of autism, please check out this graphic I found. And 100% trust your mom (or dad, grandma, guardian, grandpa, whatever) gut. Voice concerns to your child’s pediatrician and get the referrals. Your child may not be able to advocate for themselves, YOU need to do it for them.
And just a note, you can always reach out to me with questions. I am not a doctor, but I’m always happy to help and share resources and give my best advice. You can do so here.