There are many reasons to pursue a diagnosis. Most importantly, it can unlock services and opportunities that may otherwise be inaccessible. However, in some cases it may be too early to identify the diagnosis in question. And sometimes, pursuing a diagnosis can take time and attention away from the most important piece of all: putting into place the services your child needs.
Research shows that introducing small changes early on in a child’s life can have a big impact on their later development. According to a study published in the Journal of Autism and Developmental Disorders, “Research shows that early intervention services can increase cognitive and adaptive skills in children with disabilities by up to 25%.” Thanks to federal law, every state in America has a system to provide early intervention services free of charge to children between the ages of 0–3 who have been diagnosed with, or are at risk of, developmental delays and disabilities. To learn more about this, read our article The 4 Ws of Early Intervention: WHAT Is Early Intervention and How Is It Funded?
But there is a lot to consider when pursuing, or not pursuing, a diagnosis. We spoke with Fran Goldfarb, Core Function Director of Community Education, Information Dissemination, and Technical Assistance at USC’s University Center for Excellence in Developmental Disabilities (UCEDD), Children’s Hospital of Los Angeles (CHLA), about the importance of timing and having open conversations with providers about a child’s needs:
A diagnosis can give you language to appropriately express your concerns, hopes, dreams, and vision for your child’s future, and create more opportunities for early intervention services. But as Goldfarb explains, a diagnosis doesn’t have to be for forever, and it doesn’t have to be rushed. Things change and evolve and it’s important that in the process, you have a provider who is open to change and is curious to learn more about your child over time.
Rachel Madel, M.A, CCC-SLP, gives parents an important tip when finding a primary care provider: find someone who is eager to learn and grow, even if they are young! “I'd so much rather have a young clinician who doesn't have a lot of experience under their belt but who's super eager to learn and collaborate, than a clinician who's had 30 years of experience but only does things a certain way, isn't down for collaboration, isn't open to learning new things,” she says. She adds, “If they're eager to learn, and they're constantly trying to do better, that's a really good sign for the clinician.” And a good sign for you and your child!
Dr. Shafali Jeste, MD, Chief of the Division of Neurology at Children’s Hospital Los Angeles (CHLA) and Professor of Neurology and Pediatrics at Keck School of Medicine of USC, also emphasizes how much a willingness to learn is important in a provider: “I have pediatricians who call me and have never seen a child with a specific, for instance, genetic syndrome, that I have seen quite a bit of, whatever that might be. But they're interested, they want to know, they want to know how to help, they want to know how to help treat the child, and so we develop a therapeutic alliance.”
If you’re concerned about your child, the first step is to tell your child’s provider and ask for appropriate assessments and screenings. Your child’s provider may refer you to a specialist if further assessment is required. Read our article The 4 Ws of Early Intervention: WHO Do You Go To for Help? for more information on building a care team.
You can contact your state or territory’s early intervention program to find out if your child can get services to help. In California, this would be Early Start. California parents can also request a screening for services through the Regional Center Early Start Intake and Family Resource Center (referral from a professional is not needed).
You may feel overwhelmed during the process and that’s okay! Receiving a new diagnosis or news of a developmental delay is a lot to process and understand. When you’re ready, make time to explore the many resources and benefits that are available to you. Reaching out to local resources and communities can make all the difference. As Fran Goldfarb tells us, “We also highly recommend that [parents] get in touch with their local Family Resource Center, especially families who are Early Start, because they're talking with parents who are very experienced with making your way through Early Start and getting support in pulling that team together and effectively using the team.”
As you navigate this path with your child, you may be wondering where to find resources that are age-appropriate that can help them understand that they are not alone. Our research team has gathered some great resources to help our kiddos along their self-empowerment journeys, including books, children’s tv shows, and more. Check them out here!
Learn more about the importance of starting early intervention services as soon as possible here. And if your child already has a new diagnosis, as parents who are now a few years further along in this journey, we would like to share a few pieces of advice that we hope will help you move forward.
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