General guide for families visiting Developmental Medicine

Centralized Recruitment Initiative

If your family is seen in our Developmental Medicine Center, you may be contacted about research opportunities around the time of your visit. Joining a research study is completely optional. We want to let you know about all studies in case you are interested. If you are, we will connect you with the research teams.

Meet the study coordinators who work on the Centralized Recruitment Project on our Research Team page. You may see them in clinic or talk to them on the phone. Come say hello! We would love to talk to you about our research!

Social Stories

Social Stories are a learning tool that uses pictures and words to help kids (and parents!) prepare for new experiences. Our study teams have put together social stories specifically for our families participating in research. The stories take you through the steps of a study’s visits, so your child can learn about who they will be meeting and what they will be doing during the study.

To use the social story, we recommend reading it with your child a few times a week leading up to the study visit. Our goal is to make study visits as successful as possible! Clinical versions of social stories, for example about planning your trip to give a blood sample, are available too, on the My Hospital Stories page.

Looking for clinical resources? Please visit our Developmental Medicine Center page.

What have we learned from research?

Perceptions of Individuals with Autism Spectrum Disorder on How Health Care Providers Address Sexual Health

Sharma A, Pantalone DW, Kohn B, Pereida ET, Nadwodny N, Faja S. J Dev Behav Pediatr. 2024;45(5):e406-e413. doi: 10.1097/DBP.0000000000001293.

This study looked at how young autistic and non-autistic adults talk about sexual health with their doctors. The study asked whether topics like contraception, sexually transmitted infections (STIs), and sexual abuse prevention are talked about during medical visits. Only 52% of autistic adults discussed sexual health with their doctors, compared to 81% of non-autistic adults. Conversations about sexual abuse were also less common among autistic adults. Despite this gap, both groups reported similar comfort levels talking about sexual health topics. This suggests that doctors may not initiate sexual health conversations as much with autistic patients, even though they are open to it. The study highlights the need for healthcare providers to be proactive in discussing sexual health with people on the autism spectrum.

Perceptions of Individuals with Autism Spectrum Disorder on How Health Care Providers Address Sexual Health full article

Online Autism Diagnostic Evaluation: Its Rise, Promise and Reasons for Caution

Fogler JM, Armstrong-Brine M, Baum R, Ratliff-Schaub K, Howe YJ, Campbell L, Soares N. J Dev Behav Pediatr. 2024;45(3):e263-e266. doi: 10.1097/DBP.0000000000001271.

This article explores the use of online tools to diagnose Autism Spectrum Disorder (ASD). Online evaluations offer several advantages, including easier access to care for families in remote areas or those facing long wait times to access care. They also allow doctors to observe children in their home environment, giving them a more accurate look at their daily behavior. However, there are some challenges with online diagnosis. For example, doctors can’t control the child’s surroundings during virtual visits, making it harder to spot subtle behaviors that might show up in a clinic. There are also concerns that families without reliable internet access or computer skills might find it harder to do online evaluations. There is a need for more research to improve online tools and make sure doctors can do thorough assessments to ensure children receive the care they need.

Online Autism Diagnostic Evaluation: Its Rise, Promise and Reasons for Caution full article

The JASPER (Joint Attention, Symbolic Play, Engagement, and Regulation) Intervention in Down Syndrome: A Pilot Study

Engelstad A, Joffe-Nelson L, Hurewitz SR, Pawlowski K, Baumer NT. Res Dev Disabil. 2024:152:104796. doi: 10.1016/j.ridd.2024.104796.

This study looked at the JASPER intervention, which is a play-based behavioral program designed to improve social communication. It was developed for use with kids with autism, and this project looked at whether it could also be used with young children with Down syndrome (DS). Sixteen toddlers and their parent took part in the study, with some families starting right away, while others were placed on a waiting list so that the investigators could compare the groups. Due to COVID-19, some sessions were held online, allowing researchers to look at how well JASPER worked virtually. The results showed that caregivers were able to learn and use JASPER successfully at home. Children in the JASPER group showed a 21% increase in “joint engagement,” meaning they took the lead in play and interacted meaningfully with their caregivers. Remote sessions worked as well as in-person ones, with no higher dropout rates. This suggests JASPER could improve social engagement in children with DS, even when delivered virtually.

The JASPER (Joint Attention, Symbolic Play, Engagement, and Regulation) Intervention in Down Syndrome: A Pilot Study full article

Reduced Visual Evoked Potential Amplitude in Autistic Children with Co-Occurring Features of Attention-Deficit/Hyperactive Disorder

Cremone-Caira A, Braverman Y, MacNaughton GA, Nikolaeva JI, Faja S. J Autism Dev Disord. 2024;54(8):2917-2925. doi: 10.1007/s10803-023-06005-7.

This study explores how children who have both Autism Spectrum Disorder (ASD) and Attention Deficit/Hyperactivity Disorder (ADHD) process visual information. Researchers used a technique called Visual Evoked Potentials to measure the brain’s response to images. The study then compared brain activity between children with ASD, children with both ASD and ADHD, and typically developing children. The results showed that children with both conditions had much lower brain responses to visual input than those with only ASD or neither condition. This suggests that children with both ASD and ADHD process visual information differently. Interestingly, no significant differences were found between children with only ASD and their neurotypical peers. These results highlight the unique sensory challenges faced by children with both ASD and ADHD, showing the importance of specialized support to address their specific needs.

Reduced Visual Evoked Potential Amplitude in Autistic Children with Co-Occurring Features of Attention-Deficit/Hyperactive Disorder full article