Fetal Alcohol Spectrum Disorder: A Developmental Disability
By Pat MacNeil & Colleen C., Parents of Children with an FASD
Parents and individuals with Fetal Alcohol Spectrum Disorders (FASD) would like to be part of the Federation for Children with Special Needs family. We need your support and advocacy. FASDs are brain-based developmental disabilities, caused by the consumption of alcohol by mother while pregnant. The impact on daily functioning varies. Some common problems that individuals with an FASD have are deficits in executive functioning, social skills, receptive language skills, and working memories.
They struggle to grasp concepts of time or money, lack adaptive functioning and independent living skills, have low self-esteem and poor emotional regulation. As children get older the expectations are greater than their abilities. They need more support, not less. Because FASDs are under/mis-diagnosed, they are an ‘Invisible” disability.
Based on recent national studies, it is estimated that 2-5% of Massachusetts’children have an FASD, far more than children with Autism Spectrum Disorders. The MA legislature allowed children with ASD (with an IQ above the approximate 70 IQ cut-off) to access MA Department of Developmental Services, while those with an FASD with the same or more functional limitations are excluded, in spite of the fact that their brain disability prevents them from accessing their higher IQ. As a result, thousands of children and young adults are failing in our society.
The MA Department of Children, Youth and Families reports frequent suspected FASDs in their families; studies indicate that juvenile justice system, prisons, and shelters are also filled with people with undiagnosed and/or untreated FASDs. These kids are not being “behavioral” or willful. Their difficulties stem from brain damage. As parents, we’ve learned that our children’s struggles to read, write or manipulate information were not willful, nor was their frustration simple intolerance.
Training advocatess, especially the surrogate parenting program, about the effects and interventions for children with FASD is essential, as well as access to other supports the Federation offers. Outcomes of individuals can be much improved with the understanding and appropriate interventions. We need to provide increased FASD risk identification and FASD-informed interventions. It will save money and ultimately save lives. We need Awareness, Acceptance, Advocacy and Support from the Federation and other members of the disability community.
For more information about FASD in Massachusetts, contact Enid Watson, the MA FASD State Coordinator: firstname.lastname@example.org.