Bryson and her family enrolled in our infant study in July 2021, after hearing about the opportunity through her children’s pediatrician. At the time, Bryson’s 2-year-old daughter, Bryanna, showed early signs of autism that had not been diagnosed. Bryson also had a newborn and was interested in hearing about the different resources the ESDI Lab could offer for her family.
Bryson noticed that something was “different” about Bryanna from the start. She observed certain characteristics and behaviors that seemed similar to Bryanna’s older half-brother who was diagnosed with autism. Despite being told that Bryanna was “fine” and that she would “snap out of it,” Bryson knew something else was going on. Like many parents, Bryson was hesitant at first to pursue an autism evaluation. She was concerned for Bryanna but was worried about what an autism diagnosis might mean for her. She soon realized, however, that autism “doesn’t have to be debilitating,” especially when early intervention is in place. She explained, “as a parent, if you notice certain signs and see what’s going on you’ve got to just embrace it and see what you can do to help.”
Soon after, Bryson came to us with questions about Bryanna’s behaviors and expressed interest in the research opportunity for Bryanna’s newborn brother, Brandon.
The ESDI Lab started by providing a free comprehensive autism evaluation for Bryanna within 2 weeks of the referral, which indicated that Bryanna did meet criteria for autism spectrum disorder. Bryson felt “relieved” after receiving this diagnosis because it validated her own observations. The diagnosis also unlocked further services for Bryanna and allowed her to receive more help. Now, Bryson doesn’t see the autism diagnosis as something to be afraid of. She stated, “it doesn’t mean anything is wrong with your child… honestly I think my child is pretty cool… Bryanna is the most interesting person in the world… the diagnosis just means to go ahead and get the help that you need."
Nicely said, Bryson! We couldn’t have said it better ourselves. Bryanna IS a really cool kid!
Following the assessment, the team also enrolled baby Brandon into the infant study. Over the last 6 months, Dr. Bradshaw and the research coordinators have followed Brandon’s development while providing feedback along the way. About 20% of infants with an older sibling with autism also develop autism themselves. Therefore, it is important to closely monitor their development and make referrals to early intervention as needed. Since starting the study, Bryson expressed becoming more mindful of Brandon’s developmental needs and what to be looking out for.
Bryson stated how valuable this study is for parents, as it provides valuable information about their child’s development, even if they don’t necessarily have concerns about autism. She explained, “I feel like there is a definite reason just to do the study because you never know. It's one of those things where it's better to know earlier if there are any developmental aspects… or just anything that may be neurodivergent… it’s definitely something you want to get ahold of sooner rather than later because then you know where to go with things…”
Bryson expressed a deep appreciation for this study and the resources it provided her, stating, “I don't know where Bryanna would be right now and I don't know where I would be right now if we did not find you guys.”
Thank YOU, Bryson, for your continued participation in our study. We appreciate all you do to support this research and the community!
Charlie came to his first appointment with the Early Social Development and Intervention Lab when he was 6 weeks old, after his mom, Megan, learned about the study through her OBGYN provider. Already involved in research with UofSC, Megan was enthusiastic about getting her son involved too. She contacted the ESDI Lab and we enrolled Charlie in the study shortly after.
At the time, little did Megan know the extent to which this study would shed light on Charlie’s unique developmental needs. Nor did she realize how it would pave the way for him to receive helpful resources for his language and communication. Because of the close monitoring and feedback from the study, Megan learned how to promote Charlie’s developmental milestones and gained access early intervention services when he needed them most. Charlie’s younger brother, Rory, is now enrolled in the study and he, too, is benefiting from the close monitoring and support.
We had the chance to interview Megan as she shared her experience of participating in the research with her children. Here’s what she shared:
“I've loved it with both of my children. I look forward to it every time we come into the lab because it's just so fun to see the changes every time we come in.
With Charlie, I had no baseline of his development because he was my first kid. I had no idea what to pay attention to or how to encourage his development. During our lab visits I saw the tasks that they were having him practice in the lab, and I was like OK, I see what you're trying to get him to do.
We would go home and practice these tasks and this would give me an idea of what we could do to help him. Each time we came into the lab he got closer and closer to completing the tasks. It was so fun to see how he was developing and what he was able to accomplish after each session... Now I can practice these skills with Rory and I have a better idea of what to do with him. Every time I come into the lab I look forward to learning something new.”
Through the study, Megan learned that Charlie had some speech delays that had not been addressed with his other providers. The close monitoring and feedback she received helped her better understand Charlie’s needs and advocate for the right services for him. She stated,
“With Charlie I always assumed that he was progressing normally. But I did notice that he didn't babble a whole lot and I couldn't really get him to imitate our speech. We were always told that he would be ‘fine’ and that he would grow out of it. But Dr. Bradshaw noticed these concerns too and monitored him closely through the study. She encouraged us to get speech therapy in place and wrote a detailed recommendation letter to Baby Net. This was all it took for us to get the services for him. We got Charlie enrolled in speech therapy when he was 2 years old then in occupational and physical therapy to support his gross motor skills.”
Megan also stated that the study helped calm her fears about her children’s development. Knowing that Dr. Bradshaw and her team of expert clinicians were monitoring her children and providing recommendations as needed helped her relax.
“Participating in the study was the best thing we have done for them… it helps you relax to know that someone else is closely monitoring you child and giving you a second opinion… You don’t have to worry about it or second guess yourself.”
Now, it’s been over two years since Charlie first enrolled in the study. He has graduated from the program and continues to show progress with his development since receiving the speech, occupational, and physical therapy services. His communication continues to show improvements and he is “playing more like a child his age.”
Without this research, according to Megan, “we wouldn’t have known he had these delays or that these services were needed at this time. Without participating in the study we definitely would not be where we are today.”
Towards the end of the interview, I asked Megan what feedback or advice she would give to parents who are interested in the study, but who might feel hesitant to take the next steps. Here's how she responded:
“I definitely understand the hesitancy. You don't want your children feeling like they’re lab experiments or something like that. But the research really just involves watching how they develop and how they learn new skills. They observe your infant while you and your baby play in a controlled environment… There’s nothing scary about it. If at any point the kids get uncomfortable or fussy, they stop and let them have a break. There's no reason to not participate in this lab because if anything, just the data that you get from their scores and all of the feedback from Dr. Bradshaw makes it all worth it. Anyone who is interested should participate… I mean, it’s just invaluable.”