This article about prenatal substance exposure is brought to you through our partnership with the Jockey Being Family Foundation® which shares our vision of providing education and support to strengthen families.

When you were preparing to adopt or accept a foster placement, you diligently educated yourself about the impacts of prenatal substance exposure. However, now that the child is living with you and attending school, it’s turned out to be an entirely different experience than you expected. Reading the articles and listening to the experts talk about the impact of alcohol on a developing baby’s brain was helpful but living it every day is challenging for you and your child. So, what do you do when you observe challenging behaviors or lagging abilities, and you suspect that the child has Fetal Alcohol Spectrum Disorder (FASD)?

The First Three Steps to Get an FASD Diagnosis

Unlike prenatal substance exposure to drugs, which often can be diagnosed at birth, FASD is often not diagnosed until a child reaches 10-12 years old. Research tells us that about 85% of kids with FASD go undiagnosed. These later diagnoses often occur because a typically developing brain transitions from concrete, explicit thought to abstract thought around this age. A child with FASD has delayed development of those thinking skills. Those delays appear in the child’s school performance around 3rd or 4th grade.

Understanding Prenatal Exposure to Alcohol and Drugs

When you are battling homework every night, struggling with behavior issues, and troubled by your child’s challenges, it’s easy to feel overwhelmed, with no idea what to do first. If you are wondering whether your child’s challenges may be rooted in FASD, there are a few steps you should take to get the diagnosis underway.

1. Talk with your child’s pediatrician.

Though your general pediatrician likely cannot assess and diagnose FASD, they can offer you recommendations of specialists and resources in your community that can perform the necessary evaluations. FASDUnited.org also maintains a state-by-state resource directory of FASD diagnostic clinics and service providers.

Share with the pediatrician what you know about your child’s prenatal experience, photos of the child as a baby or toddler (if you can get a hold of them), growth charts, medical records, and the biological family’s health history (again, if you can get a hold of it). Be prepared to give specific examples of your child’s daily challenges or delayed skills, especially at school.

Your pediatrician might recommend (or perform) other screening assessments before recommending you to a developmental pediatrician, geneticist, or neurologist. These assessments include cognitive ability, learning and speech/language development, social and behavioral problems, and other health issues to first rule out other medical or physical issues.

It’s common for a child with FASD to have other diagnoses, such as ADHD, ODD, ASD, or PTSD. Although it’s possible to have co-occurring diagnoses, the more diagnoses an individual has, the more likely the underlying cause is prenatal alcohol exposure. Don’t be afraid to ask questions and dig deeper if your pediatrician’s initial assessment doesn’t make sense.

2. Talk with your child’s teachers, counselors, and caseworkers.

Hopefully, you’ve already opened a clear line of communication between home and school about your child and their academic experience. If you have not, email your child’s primary teacher and request a meeting to discuss their observations, your struggles with schoolwork at home, and how your child adapts to the classroom environment. Discuss your expectations for your child and listen to what they report about your child’s strengths and weaknesses.

If your child is struggling academically, you can request a psychoeducational evaluation. Again, make this request via email for documentation. Most states have time frames that school districts must observe when a parent requests academic support or services. Ask them to include assessments of your child’s adaptive and executive function skills. The special education team will use the results of that evaluation to create a support plan that targets areas of need and goals to support those needs.

If you can reach out to the child’s caseworker, ask to review the child’s complete file. Look for behavior reports, academic progress from other schools, and narratives from former foster families or other adults who supported this child.

Navigating Special Education and the IEP/504 Process.

3. Schedule consultations.

Use your pediatrician’s recommendation or referral to schedule assessments and evaluations with specialists with expertise in prenatal substance exposure. If you have FASD clinics or specialists in your area, that’s fantastic. Many families travel for the sometimes extensive evaluations and care from specialty clinics nationwide.

You may also find it helpful to work with geneticists, psychologists, or developmental pediatricians to gain the complete picture you need to support this child. Try to be patient – many of these specialists have extensive waiting lists. Ask about any additional information they need you to gather while you wait.

If you want additional direction and guidance, consider the FASD Family Navigator program from FASDUnited.org.

Additional Resources to Help You Get the Ball Rolling

Your Advocacy for this Child Matters!

The uphill climb of getting the correct diagnosis for any child with neurodiversity can be overwhelming. But take heart—this work will make a significant difference in your child’s sense of safety and trust in your care. Knowing that Mom or Dad is in their corner can give them the boost of confidence that they are precious and valued. The messaging they get from you as you seek the right support will fill their sails and help them thrive.

Image Credits: Los Muertos Crew; Andrea Piacquadio; Julia M Cameron