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Piecing Together the Puzzle The Road to an Autism Diagnosis BY AMANDA MILLER
20 APRIL 2024 | NOLAFAMILY.COM “I took her to her pediatrician and I showed her the snapping by her ear. The pediatrician immediately looked an 11-month-old baby would bounce and smile, reach out to grab you, and be really excited to see you. I would walk into a room and Emery wouldn’t respond.” THE START OF THERAPY At first, the family believed that due to Emery’s repeated ear infections that the lack of response was due to fluid in her ears. However, at an appointment with the pediatrician, the discussion shifted. I n August of 2020, Emery W. entered this world at the height of the pandemic. The happy baby girl brought much-needed joy to the family during a difficult year. Although, 11 months later, members of the family began noticing certain mannerisms of Emery’s that caused them concern. Ryn W., Emery’s mother, explains, “My mother had mentioned that Emery was not making eye contact. My mother is very much a hyper-focused grandmother, so I brushed it off. It wasn’t until my father-in-law pointed out the same thing that it really hit me in the gut.” While Ryn admits to being in denial at first, other things Emery did–or didn’t do–were becoming more noticeable. Ryn explains, “My first sign that something was up was she lacked eye contact with me. I would also snap my fingers by her head to get her to turn her head to notice me, or clap a very loud clap, and she would not turn. The final was, I would walk into a room after not seeing her all day, and typically,
at me and said, ‘I’m going to give you some referrals, and none of this is your fault,’” says Ryn. “The farthest thing from my mind was autism, but I kept hearing words like ‘developmental pediatrician,’ ‘EarlySteps,’ ‘OT,’ and ‘speech therapy.’ I walked out of the room with a long list of people to contact next.” After waiting two weeks for a referral, Ryn was informed that it could take up to six months, or longer, for Emery to be seen for a consultation with a developmental pediatrician. While on the waiting list to receive this consultation, Emery went through an evaluation for EarlySteps in order to receive therapy services. EarlySteps offers services to children from birth to age three who have a “medical condition likely to result in a developmental delay, or who have developmental delays.” Ryn explains that in order for Emery to qualify, she had to fail two out of five categories, or domains, during the evaluation. The domains the evaluation covers include: motor skills, cognitive, social-emotional, communication, and adaptive. “At the time, I thought to myself, she might fail one. If she fails two, we’ll get services, but maybe she won’t even qualify. When the results came back, I was shocked to know that Emery failed four out of five categories. The only one she did not fail was cognitive. So that was eye opening that she was one, in my eyes, severely delayed. And two, she was a pandemic baby, so was this my fault?” says Ryn.
During COVID, children weren’t experiencing normal life situations. However, many parents are still blaming themselves. Denise Housewright, a licensed speech pathologist with the EarlySteps program who has worked closely with Emery, shares, “There are quite a few parents–COVID or no COVID– who want to blame themselves, and I have to reassure them that we don’t know what caused this right now. I mean, did COVID hurt? Absolutely. But there’s no way, unless there was maybe a stroke in utero or something medical.” Emery began speech therapy at 13 months old with EarlySteps before starting group therapy at 18 months old at The Emerge Center. The biggest concern, in the beginning, was Emery’s communication, which had regressed. Ryn shares, “She had zero language, and she couldn’t communicate with us about what she needed or wanted. It was screeching, so you would think she was in pain, but that was her way of communicating.” While at The Emerge Center, Ryn learned that Emery had a developmental delay in the speech category, and for the next two years, Emery was completing therapy several days a week. A CHANGE IN PLANS When Emery turned three, she was discharged from EarlySteps but was enrolled at Gateway Preschool & Technology Center. The family also made it possible for Emery to continue seeing Housewright while at the preschool. “On day three of being in the preschool,
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