FASD-informed IEPs: Are they Necessary?

image of a bowl of food being prepared, a whisk being held in the bowl actively mixing the contents. on the right a bottle of liquid is being poured into the bowl. the bowl is labeled IEP Document and the bottle is labeled FASD Knowledge, the implication being that the person is mixing in FASD knowledge into the IEP document and mixing in thoroughly throughout. the background is blurred and indistinct, and the entire image is filtered in a reddish hue.

Let’s start with why are FASD-informed IEPs even necessary? Doesn’t the I in IEP (Individualized Education Program) cover everything that would be needed for any student?

Ideally, yes. However, there are components of the IEP and what has been accepted as ‘best practices’ for many years that are not aligned with our current understanding of neuroscience (i.e. brain-based science) and that often contribute to harmful, rather than helpful, supports and services being put in place.

FASD-informed IEPs utilize brain-based approaches1 to understanding, supporting, and deciding upon appropriate interventions that address the unique needs of the individual. By first understanding how FASD impacts the brain’s – and the rest of the body’s – development, we can tailor the various sections of the IEP to address the student’s unique needs.

For example, if we are looking at a writing intervention for a student, we first need to know which aspects of writing are impacted by this student’s unique brain structure. If their memory is impacted2 (which is true for nearly everyone with FASD), then holding onto a thought in the brain long enough to get it on paper may be difficult. If executive functioning is impacted2 (another area of brain development that is almost universally affected by FASD), then planning and organizing thoughts to create a cohesive and flowing essay may prove to be very challenging. For some students with FASD, the physical act of writing can be uncomfortable or exhausting. FASD has more than 400 comorbid medical diagnoses3 , so it is important to work collaboratively with the student’s healthcare team to address any physiological challenges that may be impacting the student’s educational functioning – in this case, writing ability. Once we have a good idea of the unique impact this student’s brain and body are having on their ability to write, we can design the writing intervention to support those specific needs.

For the student in this example, we may want to explore mind mapping tools to help the student get all their ideas out and then utilize the mind map to support their memory and aid in the development of their essay or writing assignment. We may use a similar tool, diagram, or a visual or tactile representation of their ideas to help the student organize their ideas and plan out the parts of the essay ahead of time. These tools may be on paper, on a computer or other electronic device, or any means that is accessible for the student. For physiological discomfort during writing, a pencil grip may be helpful, or a scribe, or a computer program that types out what the student voices. Whatever will help the student most effectively – and hinder them the least – is the preferred method of intervention.

The effectiveness of some parts of the IEP depend on how they are implemented via the school systems. Two particularly poignant aspects of the IEP for students with FASD are Functional Behavior Assessments (FBA) and Behavior Intervention Plans (BIP). Both can be extremely beneficial when implemented with an FASD-informed lens. However, many school-based FBAs and BIPs look for the surface-level causes for behavior but do not delve into the underlying needs that are truly at the root of the behavior being evaluated.

A common challenge with these components of the IEP is a focus on solely attention, task avoidance, sensory input, or accessing a desired item. While these four categories may encompass many behaviors on a surface level, they don’t identify the underlying need that is driving the behavior and therefore contribute to missing the opportunity to effectively intervene.

blue callout box with text If we look at an example of a student demonstrating a behavior that is deemed by an assessor or the IEP team as attention-seeking, how might this behavior be addressed? Typically, the response is to try to get the student to seek attention in a more socially acceptable manner. If our focus for this student is to teach a different way to seek attention, while we may mitigate the initial behavior of concern, we have not actually addressed the student’s need, nor resolved the underlying challenge. If instead, we look deeper and ask why the student is seeking attention, we are likely to learn more about the student’s underlying needs – the needs that are driving the behavior – and can be more precise with our interventions, setting the student up for more successful outcomes.

If instead, that same student’s behavior was looked at as trying to get someone’s attention in order to communicate a deeper need, our focus would shift from changing the behavior itself (attention-seeking) to identifying and supporting the underlying need. By endeavoring to figure out what is missing – or triggering – in the environment, as well as considering other contributing factors such as the student’s health4 or how their body perceives threats and safety in their environment (neuroception)5 , we can begin to discover what is contributing to the underlying need not being effectively met.

Let’s use the example of Trevor, a student who was getting into trouble at school for pushing or hitting the peers he was sitting next to in class. Utilizing a traditional ABC (Antecedent, Behavior, Consequence) model of behavioral observation, we see that whenever Trevor’s peers’ conversations increased in volume (antecedent) Trevor appeared to become agitated (wiggling in his seat, facial expressions indicating discomfort, not paying attention to the lesson) and then would push or hit out at the peer sitting closest to him (behavior). The consequence is that the peers would then focus their attention (and anger) on Trevor and the teacher’s attention would immediately shift to Trevor as well (consequence). While the ABC method may accurately depict the surface level observational occurrence of Trevor receiving attention as a result of his behaviors, it fails to acknowledge the underlying need that was not being met during this time. In this case, when we look deeper, we learn that Trevor is extremely sensitive to loud sounds. Because he also has deficits in pragmatic language, social skills, and executive functioning, Trevor’s response is impulsive and lacking the social graces we desire to see in a classroom setting. His sensory overload during those times when his seatmates are becoming increasingly louder is something Trevor is not yet able to effectively manage on his own, so he lashes out in an attempt to stop the excessive sensory input.

There are often many aspects of our functioning that are impacted by biological or physiological factors that we may not even be consciously aware of. Neurobehavioral approaches to behavioral needs allows us to address the underlying needs of students by evaluating the brain-based tasks needed to complete a task and matching that to the brain-based skills the student is able to access in that moment. If the student’s brain is not able to ‘do’ the skill needed for the task, they will be unable to do so no matter how hard they try and no matter how much we incentivize them.

Another important aspect of FASD-informed IEPs is the understanding that the brain is a physical organ. Therefore, FASD is, in fact, a physical disability and should be addressed primarily with accommodations. For students who have low vision, we may seat them closer to the lesson or provide larger fonts and ensure our graphics have strong color contrast. These are all accommodations and are given with the understanding that the student doesn’t have control over what they can and cannot see clearly; it’s just the way their body sees. Through understanding FASD as a physical disability, we can focus on providing accommodations that eliminate or reduce the catalyst or trigger for a behavioral response, provide structure for executive functioning challenges, allow the use of a scribe for writing essays, and so on. Analyzing the underlying need and the brain-based challenges that impact the student’s educational functioning allows us to provide effective and thoughtful interventions that truly meet their underlying needs.

Does having an FASD-informed IEP actually make a difference?

Yes! The more educators understand about FASD and the earlier the student’s needs are identified, the better the student’s long-term outcomes will be. Two of the four protective factors listed by the CDC6 – early diagnosis and involvement in special education and social services – are addressable via the IEP process. When families and educators work together to ensure student’s needs are effectively met both at home and at school, children are much more likely to receive the services needed.

Early intervention, in general, is extremely beneficial for any child who is not meeting developmental milestones or behavioral expectations.7,8,9 For students with FASD, any adverse experiences have a compounding effect10 because of the already altered brain anatomy and connectivity. By providing effective supports and services early on, we can reduce the harm caused by well-meaning but ineffective intervention strategies11.

Offering appropriate and supportive services for students with FASD does not require the school to provide a diagnosis. As with all IEPs, special education in the United States is based on the eligibility categories determined under the Individuals with Disabilities Education Act (IDEA)12 and any additional categories determined by the State. By following the laws that are already in place and identifying and assessing every area of suspected need, a thorough evaluation can delineate the student’s needs and provide the basis for a robust discussion with the IEP team that can specify appropriate supports and services. The more the student’s needs are detailed in the report, the more helpful this document may be for the family when seeking a diagnosis.

Special Education services are designed to facilitate individualized educational programs that meet the needs of students with disabilities. When these services are in place and are structured to meet the unique needs of the student, they serve to bolster the student’s learning, social functioning, educational outcomes, and self-esteem. The IEP document should be developed in such a way as to be a guide to those working with the student regarding how to appropriately meet the student’s educational needs. When individualized educational programs are designed by FASD-informed teams and utilize best practices in brain-based approaches to learning and behavior, outcomes can be very favorable.

What are the challenges to creating FASD-informed IEPs?

The first challenge is ensuring everyone on the IEP team has accurate and up-to-date information about Fetal Alcohol Spectrum Disorders. Without understanding how prenatal alcohol exposure impacts brain functioning, IEP teams are likely to implement strategies that are not aligned with the unique aspects of brain processing characteristic of FASD. More traditional behavioral interventions are likely to be prescribed and are just as likely to be ineffective.

The paradigm shift needed to perceive behaviors or abilities as symptoms of a disability (instead of willful or intentional choices) is another significant barrier. While there is movement toward implementing Universal Design for Learning (UDL)13 in more schools, that approach in and of itself requires a paradigm shift that is often slow to occur. The two paradigms are overlapping though and shifting within one of these perspectives will make it easy to flow into the other. When we see all students as unique individuals and approach teaching and learning with a mindset that every brain is different14 (and they are!) and therefore every child may need something slightly different in order to truly access the curriculum and demonstrate their knowledge effectively, we allow ourselves to be more creative in how we teach. These shifts often take time and are hard for some to imagine if they haven’t seen them implemented successfully. Universities are beginning to teach UDL in their teaching programs, families who are connected to FASD-informed services are typically introduced to neurobehavioral approaches to parenting, and there is an increasing movement toward inclusive schooling. While these are long-term solutions, they are moving in a helpful direction.

Aligned with the paradigm shift is understanding how utilizing FASD-informed strategies will not only improve the students’, but also the educators’, experience in the classroom. By meeting the underlying needs of the student effectively, behaviors reduce and learning increases. It becomes a win-win situation for the entire class.

Stigma is another inhibiting factor to accessing appropriate services for students with FASD15. There is still a disinclination to ask about alcohol use during pregnancy as well as a disinclination to disclose such use. Because our beliefs influence our behaviors, this societal stigma that exists often creates a barrier to accessing supportive services.

New research is needed on interventions that are FASD-informed. Much of the research focuses on the effects of alcohol on the developing fetus, but little peer-reviewed research exists on effective interventions16 . Current best practices for FASD emphasize supports that are brain-based and aligned with the individual needs of the student. Neuroscience supports neurobehavioral approaches for students with FASD (and these are applicable not only to all neurodivergent individuals, but also to typically developing students as well). However, widespread acceptance may be improved by increasing peer-reviewed research on effective FASD-informed – and brain-based -interventions and supports.

The way IEPs are implemented can vary greatly from state to state and from district to district, sometimes even varying on a school or classroom level. There can be systems barriers to accessing testing tools that accurately and effectively identify FASD via the assessment process, variability in state or local resources including FASD-informed community supports and services, challenges to collaboration between IEP team participants (impacted my multiple aspects of bureaucracy and inequities in systems structure), and many other influencers.

With all of these barriers to creating FASD-informed IEPs, is it even worth it?

green callout box with text Absolutely. Current estimates for prevalence of Fetal Alcohol Spectrum Disorders in the United States is one in twenty (1:20)17. That equates to at least one student in every classroom and hundreds of students in most school districts. This is not a low incidence disability. There are likely to be students with FASD in every classroom – general education, advanced placement and gifted classes, special day classes, non-public schools, and residential schools. With nearly 100% of individuals with FASD having memories difficulties – but not the same type of memory challenges, and nearly (if not precisely) the same percentage having challenges with executive functioning – with varying manifestations, providing supports and services individualized to the student’s distinctive learning profile is essential. Through gathering data via assessments, observations, historical documents, and collaborative conversations with the student, family, and other service providers, we can learn how the student’s brain processes information and tailor their educational program to their unique learning needs.

While reducing or eradicating stigma and changing laws and the way we work in systems are not likely to occur quickly, we can take immediate steps toward these goals. Being conscientious of the language we use and how our implicit bias may be impacting our words and actions is an important first step in reducing stigma. Connecting with others to collaborate on efforts across municipalities can make each person’s and each organization’s impact more powerful.*

Research can also take a significant amount of time to complete, which is why it is essential to unite both those at universities and other research institutions, those in the field doing effective intervention work, educators, and those with living experience with FASD to ensure that upcoming research is aligned with the needs of our schools and communities.

Paradigm shifts are not always easy to accomplish on a large-scale level, but can be successful when aligned with other social movements in the same direction. By combining efforts between FASD educators, neuroscientists, and inclusion advocates we enhance the volume of our message. The goals of these movements are all aligned and the vast majority of the interventions recommended by any one are good for the others as well. We have an opportunity to shift the tide in how we educate the next generation(s) and we will need to coalesce to do so effectively.

What we can start with today is education. Ensuring the information provided to the public is accurate and that educators receive training in FASD and how to provide appropriate and effective accommodations, supports and services via the IEP process – and throughout all classrooms – will make a significant positive impact for students with FASD and for all students.

With FASD being the most common developmental disability18 and yet still so frequently misidentified17, increasing educators’ awareness and accurate knowledge of FASD and creating FASD-informed IEPs are two significant steps toward effectively supporting students with Fetal Alcohol Spectrum Disorders. By reducing ineffective strategies that can cause harm and increasing supportive services that nurture student’s academic success through appropriately tailored and individualized IEP services, we can effect positive outcomes for students with FASD.

* FASDNow! is an example of a statewide alliance of individuals and organizations throughout California that have come together to promote statewide programs and changes to support the needs of Californians living with FASD. FASD United is an example of an organization that has united FASD groups across the United States under one umbrella in an effort to make bigger waves in the field and address needs on a national level. There are also groups designed to promote networking and collaboration in the field. The FASD Knowledge Share Collective meets quarterly to share what people are doing around the world and make connections with others who have similar interests or want to learn from one another. The FASD Collaborative Project aims to be a hub of information that connects the many organizations working in the field of FASD in order to promote effective dissemination of accurate information and nurture collaboration amongst organizations.

1 Dalahooke, M. (2023, February 28). How teachers can take a more compassionate approach to behaviors. Mona Delahooke, Ph.D. – Pediatric Psychologist – California. https://monadelahooke.com/how-teachers-can-take-a-more-compassionate-approach-to-behaviors/

2 Gibbard, W. B., Wass, P., & Clarke, M. E. (2003). The neuropsychological implications of prenatal alcohol exposure. The Canadian child and adolescent psychiatry review = La revue canadienne de psychiatrie de l’enfant et de l’adolescent, 12(3), 72–76. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2582737/#b17-0120072

3 Centre for Addiction and Mental Health. (2016, January 6). Over 400 conditions co-occur with Fetal Alcohol Spectrum Disorders, study finds. ScienceDaily. Retrieved June 19, 2024 from http://www.sciencedaily.com/releases/2016/01/160106091842.htm

4 Salami, Mahmoud. (2021). Interplay of Good Bacteria and Central Nervous System: Cognitive Aspects and Mechanistic Considerations. Frontiers in Neuroscience. 15. 613120. 10.3389/fnins.2021.613120. https://www.researchgate.net/publication/349280183_Interplay_of_Good_Bacteria_and_Central_Nervous_System_Cognitive_Aspects_and_Mechanistic_Considerations

5 Delahooke, M., PhD, & Delahooke, M., PhD. (2023, February 28). A New Lens for Understanding Behavior Problems – Mona Delahooke, Ph.D. – Pediatric psychologist – California. Mona Delahooke, Ph.D. – Pediatric Psychologist – California. https://monadelahooke.com/new-lens-understanding-behavior-problems/

6 “Treatment of FASDs.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 15 May 2024, https://www.cdc.gov/fasd/treatment/?CDC_AAref_Val=https%3A%2F%2Fwww.cdc.gov%2Fncbddd%2Ffasd%2Ftreatments.html

7 Karoly, Lynn A., M. Rebecca Kilburn, and Jill S. Cannon, Proven Benefits of Early Childhood Interventions. Santa Monica, CA: RAND Corporation, 2005. https://www.rand.org/pubs/research_briefs/RB9145.html

8 Karoly, Lynn A., M. Rebecca Kilburn, and Jill S. Cannon, Children at Risk: Consequences for School Readiness and Beyond. Santa Monica, CA: RAND Corporation, 2005. https://www.rand.org/pubs/research_briefs/RB9144.html

9 Streissguth AP, Bookstein FL, Barr HM, Sampson PD, O’Malley K, Young JK. Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. J Dev Behav Pediatr. 2004 Aug;25(4):228-38. doi: 10.1097/00004703-200408000-00002. PMID: 15308923. https://pubmed.ncbi.nlm.nih.gov/15308923/

10 Kautz-Turnbull, C., Rockhold, M., Handley, E. D., Olson, H. C., & Petrenko, C. (2023). Adverse childhood experiences in children with fetal alcohol spectrum disorders and their effects on behavior. Alcohol, clinical & experimental research, 47(3), 577–588. https://doi.org/10.1111/acer.15010

11 Quercus, Ande. “Neurodiversity, Behavior, and the Problem with PBIS.” Alliance Against Seclusion and Restraint – Opening Doors to Safer and More Inclusive Schools, Alliance Against Seclusion and Restraint, 18 May 2024, https://endseclusion.org/2024/05/18/neurodiversity-behavior-and-the-problem-with-pbis/

12 34 CFR § 300.8 – Child with a disability. https://sites.ed.gov/idea/regs/b/a/300.8

13 CAST (2018). UDL and the learning brain. Wakefield, MA: Author. Retrieved from https://www.cast.org/products-services/resources/2018/udl-learning-brain-neuroscience

14 Neuroscience News. (2018, July 10). Every person has a unique brain anatomy. https://neurosciencenews.com/unique-brain-anatomy-9541/

15 Emily Bell, Gail Andrew, Nina Di Pietro, Albert E. Chudley, James N. Reynolds, Eric Racine, It’s a Shame! Stigma Against Fetal Alcohol Spectrum Disorder: Examining the Ethical Implications for Public Health Practices and Policies, Public Health Ethics, Volume 9, Issue 1, April 2016, Pages 65–77, https://doi.org/10.1093/phe/phv012 

16 Petrenko, C.L.M. Positive Behavioral Interventions and Family Support for Fetal Alcohol Spectrum Disorders. Curr Dev Disord Rep 2, 199–209 (2015). https://doi.org/10.1007/s40474-015-0052-8 

17 May, P. A., Chambers, C. D., Kalberg, W. O., Zellner, J., Feldman, H., Buckley, D., Kopald, D., Hasken, J. M., Xu, R., Honerkamp-Smith, G., Taras, H., Manning, M. A., Robinson, L. K., Adam, M. P., Abdul-Rahman, O., Vaux, K., Jewett, T., Elliott, A. J., Kable, J. A., Akshoomoff, N., … Hoyme, H. E. (2018). Prevalence of Fetal Alcohol Spectrum Disorders in 4 US Communities. JAMA, 319(5), 474–482. https://doi.org/10.1001/jama.2017.21896 

18 Clarke, M. E., & Gibbard, W. B. (2003). Overview of fetal alcohol spectrum disorders for mental health professionals. The Canadian child and adolescent psychiatry review = La revue canadienne de psychiatrie de l’enfant et de l’adolescent, 12(3), 57–63. – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2582751/

Image of author Kelly Rain Collin; white female with long straight dark hair, wearing a magenta sweater, smiling, standing in the woodsKelly Rain Collin, Ed.M. is an educational consultant who has been supporting families with navigating the special education (IEP) system for twenty years. She has specialized experience advocating for students who have mental health needs and students who were prenatally exposed to alcohol and other substances. Kelly Rain approaches IEP advocacy from a collaborative perspective, always aiming to build bridges that facilitate cooperative problem solving and with a focus on utilizing language that nourishes students’ self-esteem.

Kelly Rain runs a monthly continuing education opportunity for those who attend IEPs: FASD & the IEP Mentorship Coalition, and is available to consult with schools, families, advocates, attorneys, and other professionals regarding optimizing IEPs for students with FASD.