If You Only Have a Minute:

• Learn about FASD so you can better understand your child’s brain, behavior, and developmental needs.
• Put supports in place early, including therapies, school services, routines, and visual supports.
• Protect your child’s privacy while helping teachers and professionals understand how to support them.
• Focus on your child’s strengths and build opportunities for confidence, connection, and success.
• Find support for both your child and yourself through knowledgeable professionals and FASD-informed communities.

Having your child receive a diagnosis of Fetal Alcohol Spectrum Disorder (FASD) can bring a mix of emotions. On one hand, it can be a relief to finally feel heard and understood by medical professionals, to gain answers to your child’s challenges, and to have everyone working from the same understanding. On the other hand, an FASD diagnosis can bring feelings of sadness or grief as you process the reality of lifelong differences in how your child’s brain and body function. It can also feel overwhelming to take in so much new information at once. Give yourself time to process the diagnosis and consider these important next steps.

5 Things to Do After Receiving an FASD Diagnosis

1. Learn as much as you can about FASD.

We frequently hear from parents and caregivers that after a long journey to get an FASD diagnosis for their child, they receive little guidance. We recommend these books to kickstart your FASD education:

View further resources to support back-to-school for adoptive, foster, and kinship families.

Creating a Family also offers a Prenatal Substance Exposure Workshop for Parents. This online, interactive workshop provides information, access to a digital resource library, and opportunities to connect with other parents facing similar challenges.

Understanding that your child is not bad, lazy, or defiant, but instead has a brain-based disability that affects their ability to meet expectations, can increase compassion, both for you and for those around them. Often, it’s not that they won’t do what is being asked. It’s that they can’t do it consistently or independently yet.

This understanding can also help you adjust your expectations. Children with FASD often have a gap between their chronological age and their developmental age. For example, a 12-year-old may function more like a 6-year-old in areas such as behavior, emotional regulation, social skills, or daily living skills. Rather than parenting based solely on age, focus on the child in front of you and meet them where they are developmentally. Think stage, not age.

Barb Clark, author of Raising Kids and Teens with FASD*, has adapted a developmental quadrant that may help you and professionals working with your child better understand their developmental discrepancies. Another resource to help extended family and friends better understand your child’s needs is this beautifully crafted letter by Eileen Devine, founder of the Resilience Room.

2. Seek out appropriate services and supports.

What does your child need right now to succeed? The results from the neuro-psych evaluation and/or adaptive functioning assessment used in your child’s diagnostic process can help answer that question. Services might include occupational therapy, speech services, Early Intervention services, an IEP evaluation, Physical Therapy, mental health services, and more.

One of the most powerful supports you can provide is a predictable environment. Consistent mealtimes, bedtimes, homework routines, and household expectations help create a sense of safety and stability. Visual supports such as schedules, calendars, checklists, and reminders can help organize your child’s external world when their internal world feels overwhelming or difficult to manage.

Once you have systems and supports in place for right now, consider what they might need a year from now. What might they need in adulthood? Some programs may have time-sensitive windows of opportunity. For example, if you think your child, tween, or teen will need support into adulthood, it’s wise to begin the application process for the Medicaid Innovations Waiver. In some states, the waitlist for these supportive services can be several years.

It’s also important to consider future financial support. Will your child qualify for programs such as Supplemental Security Income (SSI) or an ABLE account? Planning can help ensure resources and safeguards are in place as your child grows.

Download YOUR Free Guide to Understanding Prenatal Exposure to Alcohol and Drugs

3. Be the gatekeeper of your child’s information.

With so much information to manage, staying organized is essential. Create a system that works for you, whether that means digital files and folders, a binder, or a combination of both. Keep copies of evaluations, diagnoses, medication information, school records, IEPs, 504 plans, notes about your child’s strengths and challenges, and other important documents. Organizing records chronologically can make it easier to track progress and quickly find information when needed.

Unfortunately, stigma surrounding FASD still exists. While the people supporting your child need enough information to understand and meet their needs, not everyone needs access to every detail of their history. Consider what information you want to share, with whom, and for what purpose.

For example, many caregivers find it helpful to write a letter to their child’s teacher at the beginning of each school year describing their child’s strengths, challenges, and successful strategies. However, it is often unnecessary to share personal details about prenatal alcohol exposure or family history. Unless you are prepared to provide a more in-depth explanation of FASD, it may be enough to say that your child has a brain-based disability, neurodevelopmental differences, or a neurodiverse condition that affects learning, behavior, and daily functioning. You can also politely request that any information you share remain confidential and be used only to support your child’s success.

These resources can help you educate school personnel about FASD:

4. Use a strengths-based approach.

Children (and adults!) with FASD are wonderfully unique. Many are affectionate, funny, creative, hands-on learners, determined, and resilient. Take time to notice and celebrate your child’s strengths, then look for ways to help those strengths grow.

Do you have a budding artist? Keep art supplies available at home, enroll them in art classes, visit museums together, create art as a family, and celebrate their efforts and accomplishments. The more opportunities children have to develop their strengths, the more confidence and success they can experience.

Strengths can also be used to support challenges. For example, a child who struggles with memorization but loves music may learn best through songs. Music can help with everything from remembering multiplication facts to completing daily routines and managing emotions.

Research has identified several protective factors that can reduce the impact of prenatal alcohol exposure. These include early diagnosis, access to appropriate services and supports, safe and stable home and community environments, and opportunities to build resilience. Most importantly, children benefit from having caring, supportive adults who understand their needs and provide consistent nurturing and stability.

By learning about FASD, advocating for supports, and creating a safe and structured environment, you are already making a meaningful difference in your child’s life.

5. Build a robust support system for your child AND for you.

Raising a child, tween, or teen with FASD is especially unique and challenging. Not all parents, professionals, friends, or the general public will understand your journey. You (and your child) need a support system of others going through similar experiences.

Seek out in-person or online support groups specific to FASD, such as:

Build community and support for your child, tween, or teen, too. There are summer camps specifically for kids who are neurodiverse or even specific to FASD. Look for play groups for neurodiverse kids, or, because prenatal alcohol exposure is so prevalent among this population, groups for kids in foster care.

If your child needs mental health support, seek professionals who understand FASD, neurodevelopmental differences, trauma, or foster and adoptive family dynamics. Finding the right supports can make a meaningful difference for both your child and your family.

Remember, you do not have to navigate this journey alone. Building a network of knowledgeable professionals, supportive peers, and understanding community members can help your family thrive.

Regardless of when your child receives an FASD diagnosis, your relationship with them is more important than any intervention, strategy, or accommodation. A strong, trusting connection provides the foundation for growth, learning, and resilience.

Your child is much more than a diagnosis. They are a unique individual with strengths, interests, and unlimited potential. By continuing to learn, advocate, and respond with understanding, you can help create the supports they need to thrive. With knowledge, intention, and connection, you can become the most effective advocate and guide your child will ever have.

Additional Resources You May Find Helpful:

Special thanks to Sarah Erdman, Creating a Family’s Resource & Training Developer, for this article!

*As an Amazon Associate, we earn from qualifying purchases but only recommend books we value. Thanks for your support.

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