Our Autism Diagnosis Journey – and how As You Are can help!

Palm Beach Mom Collective is proud to partner with As You Are to share this local mom's journey to her son's Autism diagnosis and how As You Are can help other parents facing a similar journey.

Having a website like As You Are would have saved us so much time and money

Here is our story! About a year ago, our daycare provider came to us and said it seemed like Casey was falling behind in his speech and could benefit from that and occupational therapy. We saw these things at home as well, but had been told by our pediatrician that we should wait a bit, that it might just be Casey developing a bit slower and that we should see him start gabbing away soon. But he wasn’t. With a provider next door to his daycare, we moved forward with speech therapy but decided to wait on OT until we had him evaluated by a neurologist. 

Our pediatrician in December referred us to a neurologist. We got in to see him in March, and after 10 minutes with Casey, he diagnosed him with anxiety. My question, of course, was, “What’s causing the anxiety?” Next question: “What do I do to help him?” By then we had independently started OT and were paying out of pocket for that and speech, with two sessions of each a week. The neurologist said that should be enough to help Casey. Then he said, “While he does have many of the symptoms of autism, I’m not ready to make a diagnosis. If he doesn’t make any progress, come back in a year and we will re-evaluate him.” 

That shook me. Why wait a year when we can potentially help him now? There’s such an emphasis on early intervention. His words seemed dismissive, and gave the impression that children with autism aren’t expected to make progress with speech and OT. 

So I started my seven-month battle to get answers. In the meantime, Casey was struggling at daycare. When he felt frustrated or couldn’t put his feelings into words, or felt like he wasn’t being understood, he would lash out physically. In June, he was asked to leave. It was heartbreaking. But we knew it wasn’t the best place for him anymore. It wasn’t fair to the teachers and students there to keep him there, and it certainly wasn’t fair to Casey. 

He came home, where my husband, a teacher, worked with him over the summer break. When the school year started, we had help from my mother-in-law for about six weeks. The entire time, we tried to decide what would be best for Casey. Throughout everything, we were working on getting him into Child Find, an early-intervention program provided by the School District of Palm Beach County. But even that had a waitlist. The coordinators were sweet and understanding, but the reality was it was going to be awhile before he might get in for the necessary evaluations and before they could say whether or not he would be admitted to Child Find. So I left my full-time job in September. I’ve been caring for Casey during the day, and my mom helps watch him so I can pick up freelance work. 

Backing up a little: Over the summer, we met with more specialists until an appointment in early September with a behavioral pediatrician who took one look at Casey’s records and spent some time with him before saying, “Your son definitely has autism.” 

After so long looking for an answer, I felt a wave of relief. Now we could potentially get more therapies for him. We could submit for reimbursement for some of what we’d already paid. We could qualify for grants to help pay for treatment going forward. I cried, not because I was worried about the diagnosis. There are many, many successful people with autism, and we have access to incredible therapy centers in South Florida. I cried because I felt like my fight was finally over. 

In the meantime, we had spent thousands of dollars trying to find the answer. But it was worth it. There are untold benefits to having skilled medical professionals who are trained to look for certain behavioral and developmental issues right at your fingertips. And the waitlists! There’s no urgency except your own as a parent. You have to keep pushing and fighting to get in to see a specialist, and it’s exhausting. I’ve talked with other parents who face the same thing: It could be weeks or even months before you can get your child in to see certain specialists. By removing that waitlist barrier, As You Are is really changing the game. 

What is As You Are?

As You Are is a virtual clinic providing autism diagnostic evaluations for kids 16 months to 10 years via telehealth appointments. Appointments with a trained physician are readily available in Florida through video calls. As You Are is breaking geographic barriers for families sitting on long waitlists, helping diagnose more children early in development. As You Are accepts insurance, including Medicaid and TRICARE East. Learn more and get started today at AsYouAre.com/MomCollective

About Kristina:

Kristina Webb is a mom, wife and former journalist turned blogger. She’s covered everything from small business store openings to a presidential inauguration to municipal meetings. Kristina loves sharing stories from her hometown of Wellington, Florida, while also sharing her experiences as a mother of a child with autism. She would really like people to stop accusing millennials of destroying everything.  You can read more from Kristina on her website WellingtonMom.com.