NOFAS Statement on the Stigma of FASD
People affected by FASD (Fetal Alcohol Spectrum Disorders) are often stigmatized, including individuals living with FASD and their family members and caregivers.
One group that faces overwhelming stigma, even within the FASD community, is birth mothers of children with FASD. These are women who used alcohol (and sometimes other drugs) while pregnant and have a child or children affected by FASD. These women often feel tremendous guilt, shame, and embarrassment from knowing that prenatal alcohol exposure caused lifelong problems to their own children.
The stigma placed on birth mothers is a major barrier to the goal of preventing FASD and helping individuals living with FASD. Blaming and shaming birth mothers of children with FASD and their families does not help to prevent FASD. Having the courage to speak out as a birth mother and share one’s story takes courage and DOES help to prevent FASD.
The stigma and fear of judgment is one of the reasons that women will not disclose to healthcare providers or others that they drank during their pregnancy. The stigma can sometimes prevent physicians from asking women about their alcohol use.
Some doctors have reported that they won’t diagnose a child with an FASD, even when they believe that it is an accurate diagnosis. They say that it is less complicated to diagnose the symptoms of FASD, such as ADHD or bi-polar disorder. They don’t want to stigmatize the birth mother, her family, or her child. Stigma is a major reason that FASD is substantially under diagnosed and helps explain why FASD remains a largely “hidden disability.”
The NOFAS Circle of Hope (COH) peer-mentoring program works to reduce the stigma birth mothers face by connecting them with other women who have the same experience and can relate to them with empathy, understanding, and love. The majority of members of the COH are actively involved in recovery from alcoholism or addiction and now live sober lives. The recovery process involves addressing stigma issues, through a process of admitting, accepting, and making amends for one’s past. The stigma of being a birth mother is reduced when the woman is no longer drinking, in recovery (for the members that have substance use disorders), and engaged in a supportive community of empathetic peers.
At NOFAS, we talk with women from all walks of life that drank during pregnancy. In our experience, we find that pregnant women do not drink in order to intentionally cause harm to her child. Women who drink during pregnancy and have children with FASD nearly always fall into these three categories:
- They suffer from the disease of alcoholism and can’t stop alcohol use on their own
- They are not aware that they are pregnant
- They are unaware of or are misinformed about the risks of alcohol to their unborn baby
NOFAS strongly believes that physicians and healthcare providers should ask women about their alcohol use and learn to communicate with them in a non-judgmental tone, and with empathy and concern. Women with substance abuse disorders (SUD) need support to stop their alcohol or other drug use. Additionally, NOFAS believes that alcohol use during pregnancy should be treated as a public health problem, not as a criminal offense. Communities need to provide appropriate treatment and resources that women, pregnant women, and women with children need to recover from the disease of alcoholism.
One way that professionals can help to reduce the stigma when discussing or writing about the topic of FASD is to use language that is less blaming towards the mother. For example, defining FASD as “The range of effects that occur when a developing baby is prenatally exposed to alcohol” carries much less stigma than a definition like “FASD is what happens when a mother drinks alcohol while she’s pregnant.” The term “prenatal alcohol exposure” carries less of a stigma than “maternal alcohol exposure.”
Adoptive and Foster Parents/Caregivers
Many adoptive and foster parents of children with FASD also deal with stigma. A disproportionality high number of children both formally diagnosed with FASD and undiagnosed are raised by adoptive or foster parents. The stigma of the birth mother and family is often quickly understood when talking with adoptive and foster families. Sometimes unknowingly, adoptive and foster parents acknowledge and perpetuate the stigma by emphasizing that they are not the birth parent when introducing themselves by saying “I’m an adoptive or foster mother of a child with FASD.”
They may request information or resources specifically targeted towards adoptive parents, even though there is no demonstrated need for such a differentiation. When it comes to treating the needs of a child or adult, it makes no difference whether the individual lives with their birth family, an adoptive family, or neither.
Adoptive and foster parents deal with the stigma and myths surrounding an FASD diagnosis. Some communities and schools will write off students with an FASD, believing that “children with an FASD can’t learn.” Some educators, professionals, and care providers believe that all children with an FASD will grow up to be criminals and will rage at their families. Adoptive families are often in a position of trying to convince others that their child can learn and can demonstrate appropriate behavior.
The stigma can be reduced when adoptive parents get to know other parents of children with FASD, including birth mothers, and listen to their stories. Adoptive parents can also help reduce the stigma by educating themselves about the disease of alcoholism and the recovery process, so as to better empathize with the birth mother of their child.
Children with FASD
Children with any type of disability often struggle with feeling stigmatized, and this is especially true for children with FASD. Much of the stigma is the result of the way FASD plays out in the behavior of the child. These children feel “stupid” as FASD impairs their learning skills, and they struggle in school. They feel “weird” as FASD affects their social skills, and they have trouble making friends. They feel “bad” as FASD inhibits their judgment and planning skills, and they get in trouble, at home and at school. Being labeled stupid, weird, and bad are some of the most stigmatizing identities for a child.
Children can also struggle with the stigma placed on their birth mother. They are embarrassed to tell their friends. Friends may react in a negative way, “why would your mother do that to you? “She must have been an awful person!” Children with an FASD, especially those that know and live with their birth families deal with issues of trying to protect their parent from the blame and shame.
In most instances, the stigma is often reduced when the child is formally diagnosed with FASD, and they can accept the disability. Once diagnosed, there are a number of beneficial interventions for children with FASD that can improve their behavioral and learning skills, and thus reduce the stigma even further.
Adults with FASD
Adults with FASD face a tremendous amount of stigma and are an underserved population. Many public support services that help children with FASD are cut off once the child reaches age 18. Adults deal with the same sort of stigma that children do, but with the added difficulty of less public services and having much higher expectations placed on them. Adults are expected to live independently and may be judged and stigmatized for still living with their parents into adulthood. This is an issue for people with FASD who may lack the executive functioning and planning skills needed to live independently.
Adults are expected to behave appropriately and often face harsh penalties when they fail to do so. Most people assume that an adult who is behaving inappropriately is being rude, difficult, or selfish and don’t consider that they may have organic brain damage that impairs certain behavioral abilities. Due to poor judgment, lack of ability to read social cues, understanding cause and effect relationships, and susceptibility to malicious manipulation, adults with FASD are overrepresented in the criminal justice system.
Adults with FASD often have a maturity level substantially below their actual age, yet most people and institutions with which they interact do not understand this. People with FASD may face serious criminal charges upon reaching age 18 while still having the emotional development of a child. Since the degree of impairment varies so widely with FASD, there is no simple or easy standard that institutions can use to determine the relative age of an adult with FASD.
Having a diagnosis and the ability to understand and accept their diagnosis helps adults with an FASD. The diagnosis enables them to have the language to help others they interact with to understand the learning deficits and learning style. Adults with an FASD report that having the diagnosis helped them to understand themselves and to stop judging themselves so harshly.