Unfortunately, FASD is not easy to diagnosis and it may take years for someone to recognize the symptoms of FASD. This may not be until adolescence or adulthood and the diagnosis may come as a result of legal or employment problems. There are additional problems resulting from delayed diagnosis because the complications associated with FASD are not well controlled at that point. People who are not diagnosed until later in life do not benefit from intensive therapy at an early age. It may be difficult to get these services once a person has reached adulthood as most of these therapies are for children. Diagnoses may be complicated by alcohol and drug abuse, mental illness, or other traumatic brain injuries which may cause FASD to present differently. Physical features indicative of FASD may change and growth may normalize, further complicating a diagnosis.
Diagnosis at any age is important. Once diagnosed, people often feel relieved to know that they are not “stupid” and that their limitations are caused by brain damage. Diagnosis allows for more resources and services to become available, increasing the quality of life. But, be aware that some diagnostic clinics are only available to those under 18 and some require confirmed alcohol use during pregnancy.
SAMHSA has created a PDF Fact Sheet which explains what it means to have a diagnosis of FASD
Prior to going to a treatment center, the caregivers should gather any information that may help with a diagnosis. This includes a family history including information about alcoholism, mental illness, and learning disabilities, medical records with height and weight, IEP and other documents from schools, photographs from early childhood, and letters from teachers, doctors, and other professionals who have recognized a problem. MOFAS has a full list of things to bring to a diagnostic appointment here. The diagnostic appointment is typically several hours long and involves several different health professionals. This team may include doctors, psychologists, nurses, speech pathologists, social workers, occupational therapists, and other professionals. The team may meet with the family and the individual with suspected FASD separately at different points in the appointment. After the appointment, the team may meet to discuss the case and determine a diagnosis. The diagnosis will then be presented to the family along with advice for further treatment. Though diagnostic clinics vary from location to location, this generally how an appointment will go.
A diagnosis of FASD could come with relief, shock, or fear. FASD is a lifelong condition which has serious emotional and financial consequences for a family. To cope, a family may try to:
- Reach out to local NOFAS affiliates
- Join FASD support groups
- Attend family or individual counseling
- Read books about FASD
- Have a follow-up appointment with the diagnostic team
Lutherwood’s Institute for Children and Youth Mental Health has provided more information on Coping After the Diagnosis.
Appropriate treatment and support should be made available to the newly diagnosed adult. This support group may include a speech pathologist, occupational therapist, psychologist, psychiatrist, social worker, or developmental pediatrician. Medications to reduce behavioral problems associated with FASD may be used. Additional mental health treatment may be necessary due to the high association between FASD and mental illness. Job training and other services may be used to reduce secondary problems associated with FASD to allow for more independent living. Disability benefits should be sought out immediately after diagnosis. Remain diligent in applying for Social Security benefits and reapply immediately after rejection. 15 Tips for Facilitating Liftoff for Youth Diagnosed with FASD provides tips and a sample letter that can be used when appealing for medical assistance.