When my daughter, JJ, started showing signs of speech regression around 19 months, (along with some other early signs), I started seriously considering that she may be on the spectrum. As a first-time mom, with no other family or friends with autism experience, I honestly didn’t know where to start.
What followed was a whirlwind of appointments, assessments, and lots of insurance “fun.” Here's five things I wish I knew when we started the journey towards an autism diagnosis for our two-year-old daughter:
Pediatricians Offer the First Line of Support: It seems obvious now, but I honestly wasn’t sure. Start with your pediatrician and tell them the symptoms you’re seeing. Our pediatrician (an old-school, PE-teacher-vibe physician who we loved) really locked on to JJ’s speech regression and immediately referred us to a neurologist to rule out underlying medical conditions, and for an EEG (to rule out epilepsy). So from the pediatrician, to the neurologist we went…
Neurologists Can Diagnose, But Payers Want Psychologists: While we were grateful JJ’s EEG came back clean and that there weren’t any signs of epilepsy, we still didn’t have a clear path or diagnosis. The pediatric neurologist identified autism in JJ through his own assessment, and even wrote us a letter stating as much. However, the neurologist explained that almost all insurance companies and service providers require a formal diagnosis from a licensed psychologist or psychiatrist. He offered us genetic testing, which we took him up on (more on that later), and off we went for more answers.
Don’t Expect Everything to Be Covered By Insurance: I naively assumed our health insurance would cover a psychological exam for JJ’s autism diagnosis. All you hear about is how “early intervention is key.” The early intervention window, in our autism world, is defined as birth to two years and 11 months. At this point, JJ was already two years and one month old, so I was REALLY feeling pressure – we only had ten months to squeeze in this “life-changing” early intervention! We needed the autism diagnosis to start services, ergo, one would assume insurance would cover the exam. This was not the case. Our mainstream insurance provider shared that they don’t cover psychological exams for autism until the child is three or older. They would cover services like speech therapy under the age of three, because again “that early intervention is SO important,” but we couldn’t get speech therapy without a psychologist’s autism diagnosis first! So we were at a standstill, and we turned to the Alta California Regional Center.
Alta Regional Center - A Lifeline, But Patience Is Key: Our pediatric neurologist was the first physician to mention the Alta Regional Center, a key resource for those with developmental disabilities. (Click here to find your regional center.) Now, remember that I was filled with the urgency of "early intervention is crucial!" We were advised Alta’s intake process would take two months. Two months to see someone to make a plan, to then wait for another estimated 2-3 months for an Alta-covered psychologist, to then allow us to get Alta-covered speech and occupational therapy. I was watching the months fall away and couldn’t wait – so, we paid $2,000 out of pocket for a psychologist's autism assessment in Roseville, CA. This was a lot of money for our family; luckily, we were able to use money from our tax return! Before I move on to the fifth thing I wish I had known, I want to talk a little bit more about Alta. At the two month mark we did meet with a coordinator (so their wait time was correct) and we developed our “Individualized Family Service Plan” (IFSP), which outlined that JJ would receive speech and occupational therapy, because we already had an autism diagnosis that we paid out-of-pocket for. Based on my own research, I wanted to start speech therapy right away, so we used our private insurance -- which was now "unlocked" thanks to our out-of-pocket diagnosis -- because we could start sooner. We did go through Alta’s early intervention (“Early Start”) program for occupational therapy in-home. JJ received an OT assessment from a group called Teeny Tots (LOVE them) the month after our IFSP meeting and JJ began occupational therapy at two years and five months old. We received OT through Alta for 6 months, before JJ aged out of the program.
Is Early Intervention Worth it? For our journey, yes, it was worth it. I was able to funnel all my emotions and worry into hyper-focus on advocating for services for JJ, which was likely the healthiest target for all my energy. So, while there were late nights, emotionally-charged conversations about ABA and the type of services we wanted to start with (more to come), impassioned phone calls with my insurance company, etc., we do feel grateful JJ got 8 months of speech and 6 months of occupational therapy before services transitioned to the school district at age three. It made starting preschool a little less scary (for me, JJ is practically fearless) and we did see growth in her towards her goals. ALL THAT SAID, if you didn’t get your child’s diagnosis until after three, you’re absolutely fine. All the services we’ve worked with set individualized goals, so there isn’t a sweeping benchmark your kiddo needs to hit before, for example, starting special day class preschool. Real moment of honesty: Looking back, the biggest benefit of early intervention was not feeling hopeless, as can sometimes be the case with a new autism diagnosis. In those early months of our journey, I needed to feel like I was doing everything I possibly could.
Bonus – The Title of This Article Lied to You. There’s a 6th Thing I Wish I Knew: There is so much uncertainty that comes along with an autism diagnosis, even when you have a suspicion it might be coming. All those initial feelings I went through were valid: scared, hopeless, unsure about what our future looked like, guilty (oh, so much guilt), and frustrated. Looking back, the most important thing I wish I knew when we were navigating our daughter’s autism diagnosis is: There are hard days ahead of you, yes, but there are so many more happy days ahead. You can do hard things and you are well-equipped to help your child.
Our journey through autism diagnosis and early intervention was a rollercoaster, but ultimately, filled with moments of hope and growth. If you're navigating a similar path, remember you're not alone. There are countless resources available online and through local organizations. Did an organization or health care provider help your family to an autism diagnosis? Drop your own tips in the comments section!
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