Day 35 of 99 Days to FASDay is about receiving a diagnosis of FASD and why it’s important.
In the article, Why is FASD diagnosis so important? posted on Smart Speech Therapy (June 18, 2014) by Tatyana Elleseff, it echoed some of the reasons the FASD Network of Southern California did on why it’s important:
1. It is important for service 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).
2. Understanding behaviour is a symptom of the disability.
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.
3. Positive correlation with better long term outcomes.
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).
4. Quality interventions!
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!
FASD: Thirty Reasons Why Early Identification Matters by Dr. Gordon Hodas was published. The Report states:
Children with a chronic illness or medical disorder can lead meaningful, productive lives.Early identification promotes such positive outcomes. It opens doors, restores morale, and helps us discover next steps.For the well being of individual children and their families as well as the larger community,we need to become more aware of FASD and better able to identify it the earlier, the better.
CanFASD published a Policy Paper, Why is FASD Diagnosis Important
In it, they outline the following recommendations for obtaining a diagnosis:
- People of all ages can benefit from an assessment for an diagnosis of FASD. Referral of individuals (across the lifespan) for an FASD assessment should be made whenever there is evidence of or suspected prenatal alcohol exposure at levels associated with physical, developmental, or behavioural effects.
- Strengthening and/or increasing access to screening and diagnostic services is crucial in order to enhance opportunities for earlier intervention. There might be need to share best practices regarding the establishment of mobile diagnostic clinics in rural areas or in regions without a resident diagnostic team to eliminate or reduce geographic barriers and long waitlists. Engaging policy makers to establish referral processes and criteria across different systems (health care, education, social services, etc.) to optimize referrals for FASD diagnosis is critical to this effort.
- The diagnostic criteria for FASD are the same for adults as for younger individuals. The length and structure of the assessment must accommodate the individual’s needs and capacity to participate fully in the process. The recommendations following the diagnostic assessment must address basic and immediate needs of the client, and assist them in accessing the supports and services they need. There may be markers during an individual’s lifespan when assessments should be updated, particularly the neuropsychological components.
- Parents, caregivers, and others supporting an individual with a suspected FASD be should be empowered to participate in the diagnostic process whenever possible, and in care planning activities which result. Supporting family involvement will allow clinicians to obtain more complete information being that can facilitate and strengthen the assessment process, and will prepare them for their role in assisting their loved ones following a diagnosis. Families and caregivers also play an active and invaluable role in assisting children, youth, and adults with suspected FASD to complete the numerous components of the diagnostic process.
- The diagnosis of FASD should include meaningful opportunities to reach out to birth mothers who may be struggling with alcohol and/or other substance use problems and who may be in need of care for themselves. The diagnosis of FASD in and of itself should never be taken as evidence that a child is being abused or neglected in the absence of any other typical indicators of a child protection concern. Biological parents accompanying their young or adult children must be made to feel welcome and valued as key members of their child’s support team.
Come back tomorrow for Day 36 and another myth in our 99 day journey to September 9 – FASDay!