Why is FASD diagnosis so important?

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Recently, I’ve participated in various on-line and in-person discussions with both school-based speech language pathologists (SLPs) as well as medical health professionals (e.g., neurologists, pediatricians, etc.) regarding their views on the need of formal diagnosis for school aged children with suspected alcohol related deficits. While their responses differed considerably from: “we do not base intervention on diagnosis, but rather on demonstrated student need” to “with a diagnosis of ASD ‘these children’ would get the same level of services“, the message I was receiving loud and clear was: “Why? What would be the point?”  So today I decided to share my views on this matter and explain why I think the diagnosis matters.

But first a mini tutorial on alcohol related disabilities in children.  FASD is not an actual diagnosis but a so-called umbrella term for the range of physical, cognitive, behavioral  as well as language and learning deficits that can occur due to maternal alcohol consumption at any point during the pregnancy. — Terminology pertaining to actual MEDICAL diagnostic labels  (you can learn more about it  HERE) includes:

  • —Fetal Alcohol Syndrome (FAS)
  • —Partial FAS
  • —Alcohol Related Neurodevelopmental Disorders (ARND)
  • Static encephalopathy (SE)
  • —Neurobehavioral Disorder (ND)

Alcohol related disabilities are notoriously hard to diagnose. First, there is an issue with the usage of terminology and existing co-morbid conditions. Then there are significant issues with examiner knowledge and experience diagnosing alcohol related deficits as well as personal biases of who fits/does not fits that “profile”.

Currently FASD education is definitely NOT a part of medical schools or graduate psychology programs curriculum. As a result, very few of these professionals are trained on how to appropriately diagnose alcohol related symptoms in children.   A very old fashioned approach to diagnosis continues to by utilized by some physicians, who largely depend on presence of facial dysmorphology to make a FAS diagnosis vs. relying on a multidisciplinary approach (multiple related professionals assess the child and then use the collectively gathered evidence of neurological and cognitive-behavioral symptoms to determine whether s/he has alcohol related disabilities. Then there’s the issue of confirmation of alcohol exposure in utero. Lack of records on adopted and foster care children as well as fear of stigma on the part of biological parents makes the issue of alcohol usage during pregnancy very difficult to confirm.  ——The result is a lack of routine and consistent identification.

However, the good news on the FASD-related front is that since May 2013, proposed psychiatric criteria pertaining to alcohol related disability is included in the DSM-5 as Neurodevelopmental Disorder associated with Prenatal Alcohol Exposure, or ND-PAE) (DSM-5, 2013, pgs, 798-801). Very importantly, the DSM-5 highlights the fact that ND-PAE “is a new clarifying term, intended to encompass the full range of developmental disabilities associated with exposure to alcohol in utero. The current proposed diagnostic guidelines allow ND-PAE to be diagnosed both in the absence and in the presence of the physical effects of prenatal alcohol exposure” (pg. 799). In other words, the presence of FAS specific facial features is NOT required to make the the ND-PAE diagnosis.

So why should we care if a child with an alcohol related disability has official diagnostic labels?

For starters it is important for relevant services provision. —Children with alcohol related deficits “slip between the cracks” when it comes to qualifying for and receiving services (Kjellmer & Olswang, 2012). —Public school professionals commonly report a lack of knowledge of FASD and how to appropriately plan for affected children (Koren, Fantus, & Nulman, 2010). As a result these children tend to be significantly underserved because their learning and behavioral difficulties are not always recognized and understood by educators (Watson & Westby, 2003).

Due to the diffuse nature of deficits, these children lack a uniform linguistic profile. Some can function significantly better then others, while many can have “hidden deficits”. For example, —Weinberg (1997) found that children with FAS may present with “good superficial speech and sociability that belie later deficits in both language and peer relationships” (1182).  However, no matter how “good” their speech and language appear to be, this cohort does share a few deficits in common, the ‘hallmark’ of which are behavioral difficulties which can range from rapid over stimulation and difficulty with emotional control to anxiety, aggression, opposition or excessive impulsivity.

And this is another reason why the correct diagnosis matters! So often do we hear: “S/he are doing it on purpose, they understand everything, they are just behavioral.” But isn’t behavior a form of communication? And isn’t it possible that behavior difficulties are masking a language impairment? If we are to assume that “it’s just behavior” then it’s exceedingly easy to engage in the blame game (e.g., blame the child for poor behavior, blame the parents for “poor parenting”, etc) or misdiagnose a child all together with a psychiatric condition (e.g., ADHD, Autism, Oppositional Defiant Disorder) instead of making a correct diagnosis and providing relevant to the child therapy services.

It is important to understand that early diagnosis and intervention are positively correlated with better long term outcomes for the children and their families.  Appropriate diagnosis results in the children receiving relevant and targeted interventions, significantly improves their functioning, adaptability, self-awareness and self-esteem not to mention significantly improves parent-child interactions (Streissguth et al 2004).

Finally, the quality and type of interventions children with alcohol related disabilities receive truly matter! This isn’t the matter of one type fits all style of therapy.  In-depth knowledge and understanding of alcohol related disabilities is NEEDED in order to plan and implement effective therapy services. To illustrate, one of the best approaches to date  is the neurobehavioral approach which links behavioral symptoms to deficits in brain functionality.  Thus the assessing/treating SLP MUST understand what type of brain damage/alteration can occur in the areas of frontal lobe (prefrontal cortex), corpus callosum, basal ganglia, hypothalamus, amygdala, hippocampus as well as the cerebellum in order to understand how this damage can behaviorally, cognitively, and linguistically manifest in children affected by it. While you can’t cure alcohol related deficits, the children can be taught to successfully compensate for their deficits! Consequently, the first step to successful management of alcohol related deficits is appropriate diagnosis!

Are you an educational, medical or health professional working with children with alcohol related disabilities? Are you a parent/caregiver of a child with suspected/confirmed alcohol related disability? Do you think that this diagnosis is important? Why or why not? Please share your opinions in the comments section below. 

Helpful Resources:  

— References:

  1. Kjellmer, L & Olswang, L (2012, In Press) Variability in classroom social communication: Performance of children with fetal alcohol spectrum disorders and typically developing peers. Journal of Speech, Language, and Hearing Research.
  2. —Koren, G. I., Fantus, E., & Nulman, I. (2010). Managing fetal alcohol spectrum disorder in the public school system: a needs assessment pilot. Canadian Journal of Clinical Pharmacology, 17(1), e79-89.
  3. —Streissguth, A.P et al. (1996) Final Report: Understanding the Occurrence of Secondary Disabilities in Clients With Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE). Seattle: University of Washington Publication Services.
  4. —Watson, S. M. R., & Westby, C. E. (2003). Prenatal drug exposure: Implications for personnel preparation. Remedial and Special Education, 24(4), 204-214
  5. —Weinberg, N.Z. (1997). Cognitive and behavioral deficits associated with parental alcohol use. Journal of the American Academy of Child and Adolescent Psychiatry, 36, 1177-1186.

 

5 Responses to “Why is FASD diagnosis so important?”

  1. FASDElephant June 18, 2014 at 6:35 pm #

    Terrific article on why the diagnosis matters. Thanks, and I’m recommending it to everybody I know,
    ~Michael Harris
    http://www.Facebook.com/FASDWheel

  2. Karen Kahne Shoemaker June 18, 2014 at 11:21 pm #

    This is what I’m talking about! How do you get a diagnosis? We have twins, nonbiological, both have issues but the boys are more pronounced. He’s been dx as ADHD, ODD, etc., but fas has been mentioned. I believe Mom drank before she knew she was pregnant. I know there were drugs around before and after birth. But I can’t get a dx? I need to know b/c it affects the way we need to deal with his behaviour.

    • Terri Knight Bryan June 19, 2014 at 8:04 pm #

      Karen – Children’s Research Triangle in Chicago might be your nearest diagnostic clinic. Also nofas.org has a listing of resources specific to your state. If all else fails, http://www.doublearc.org here is Toledo is awesome!
      Do NOT accept a school psychologist eval. Or any psychologist eval, for that matter. The most important appt you can have is with a neuropsychologist who has experience with the different ways FASD presents. This neuropsych should be part of a multi-disciplinary diagnostic team.

  3. C F September 4, 2014 at 12:08 pm #

    You are so right about the importance of the CORRECT diagnosis!!
    It was 14 years until we got the right one for our daughter, who was adopted from Eastern Europe. In the meantime, we were living in a nightmare, worsened by inaccurate diagnoses and hence, inappropriate treatment, advice, and school interventions. I have heard so many M.D.s, therapists, and school personnel say “diagnosis doesn’t matter; we treat the issues”.
    While a piece of that is true, how one understands and approaches issues is quite different when they are the result of brain damage; that knowledge changes expectations and interventions.
    I am now involved in raising awareness about FASD in the State of California. Our
    website is: http://www.FASDCalifornia.org. It also lists resources in California.
    Thank you for this excellent article!

  4. fraser310 November 17, 2015 at 6:47 pm #

    Thank you so much for this post. My parents pushed for my adopted brother to be evaluated in the late 1980’s against the advice of his pediatrician (his response was literally “What good will it do?”). He did receive a diagnosis of Fetal Alcohol Effects, and it definitely helped with understanding him and providing him services. I was JUST talking to my mother this past weekend about how if he was in school now, he would have (hopefully) received language therapy services for pragmatics which certainly would have helped (not that he didn’t receive any special education services, just not from an SLP). I currently have three students under the FAS umbrella on my caseload, and I always consider that with interventions, ways to address skills and strategies, etc.

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