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Photo made and donated by Samuel Nothstine
Photo made and donated by Samuel Nothstine

Developmental Disability (DD) Agency Staff

Thoughts for DD Staff Consideration

FASDs are prevalent in all populations in Alaska.  You might hear people say things like “That’s a village problem” or “That only happens to teenage mothers” or “Only poor women have babies with FASD”, but that’s simply not true.  Babies with FASDs have been born to mothers of all ages, ethnic backgrounds, education levels, and economic strata.  A person could be white, black, Native, Filipino, African, Asian and experience an FASD if they were exposed to alcohol during the pregnancy.

The stigma associated with problem alcohol use can make diagnosing FASDs difficult.  One of the elements of diagnosing an FASD is a reasonable certainty that they were exposed to alcohol at some point during the pregnancy.  This usually involves asking the mother* if she drank while pregnant and, not surprisingly, many women* do not want to honestly answer this question.  If she* used alcohol before she knew she was pregnant, the mother might feel guilty about endangering the baby, even though she didn’t know she was pregnant yet when she drank.  If she* knew she was pregnant but couldn’t stop drinking because of an alcohol dependency, she may feel guilty that she needed support to help change her behavior and keep the baby healthy.  It is important to understand that the vast majority of mothers who have used alcohol during pregnancy can stop drinking and do not intend to hurt their baby.  They are not trying to give their baby an FASD.  There is a bigger story, but stigma often makes it almost impossible for the story to be shared.

Although FASDs often manifest in similar ways to other brain-based conditions (particularly Autism), FASD is not a qualifying diagnosis for support services by itself.  Just because a person experiences an FASD does not automatically mean that they will qualify for specialized support services through their school or through the Medicaid Waiver program. See State of Alaska qualifications. In the education system, students who have a diagnosis of FASD fall under the category of Other Health Impairment and can have an Individualized Education Plan (IEP) IF they have deficits (i.e. in reading, writing, math, social skills, affective skills, and related service areas).   In summary, not only can obtaining a diagnosis prove difficult, but those who have a diagnosis of FASD may still have a difficult time obtaining supports and services that will help them reach their full potential.

The State of Alaska funded FASD-specific services for a short period of time and there was discussion about creating a special waiver for individuals experiencing FASDs.  However, the number of individuals diagnosed with Autism Spectrum Disorder sky-rocketed and local and national attention shifted away from FASD and more toward supporting individuals who experience Autism.  It is important that individuals who experience Autism receive supports and services, too, but the challenges for those impacted by FASDs did not disappear when the focus shifted.  FASDs took a back seat in priority and funding, but there are still many Alaskans living each day with the impacts of an FASD. It is also important to note that symptoms of FASD and Autism can be similar. We are aware of individuals in Alaska who have been given an autism diagnosis in error.

It is important for service providers to understand both the similarities between FASDs and other brain-based differences and how the unique individual who is the client experiences FASD.  Use the information on this website to learn how FASD impacts people generally, then think about how the specific client might be impacted.  If the service provider is fortunate enough to work for an agency that provides staff training specifically around FASDs, take advantage of those training opportunities to learn more!  Search for a course about FASDs on the Alaska Training Trust Cooperative website , Alaska Center for Resources Families, or ce4less.com and take advantage of those educational opportunities.  A service provider may also have access to information about the client’s FASD evaluation findings as this information provides a helpful ‘roadmap’ in terms of their specific areas of strength or challenge so that you can ‘play to their strengths’ and support their needs better.

By educating themselves, service providers can support both the individual in their care and the client’s family members and set up a system wherein the person can reach their potential and enjoy success.  Being patient and having an open, non-judgmental heart will go a long way toward supporting the individual who experiences an FASD.  Being educated in how their brain works differently and in some tools and techniques that have helped other people with FASDs achieve success will empower the service provider to act as an advocate for them and help them build their own “toolbox” of skills and strategies they can use to achieve the client’s goals and make their dreams come true.

Remember, people who experience FASDs are people who experience FASD.  They have the same dreams for the future, the same desire to be appreciated and loved, the same hope to live a successful and meaningful life that any of us have.  Support those dreams, desires, and hopes by educating yourself about FASDs and applying the information learned to the unique individual you are lucky enough to support.

Thank you for the work you do and the care you provide each day! Your support of and belief in the people you serve makes a difference.

*Gender-specific language

The Alaska Center for FASD acknowledges that not every person who can become pregnant identifies as a woman. Although we try to use gender-neutral language as often as possible, much of the current research available currently refers only to “women” when discussing the ability to become pregnant. When citing research, we refer to the language used in the study. In these cases, “woman” refers to someone who was assigned female at birth.