My son has FAS: Perspectives from an American mother

My 20-year-old son is disabled.  His birth mother drank alcohol while she was pregnant with him and, though he was born with ten fingers and ten toes, the drinking irreparably damaged his brain.  His disability is hidden; hidden behind a face that appears normal, a charming personality that seems stable.  But raising him was nothing like raising his three younger brothers, who came to our family in the more traditional way.

Some believe that by simply acknowledging  Fetal Alcohol Syndrome (FAS) or Fetal Alcohol Spectrum Disorder (FASD) one risks passing judgment on the mother for her transgression (or her disease). The unfortunate result of this stigma is that people born with the disorder are most often undiagnosed, misunderstood, and doomed to a difficult existence.

Of course, the disorder is not new.  Alcohol and pregnancy are two things that have been around for a long time.  Plato refers to the feeble children of alcoholic mothers and the Bible makes reference to not mixing wine with pregnancy.  And yet, in 2013, in an enlightened jurisdiction such as Arlington County, Virginia, the only service available to my eldest son suffering from FAS…. is jail. While we have curb cuts and bumpy ramps, chirping walk signals and sign language interpreters, the only thing we can provide for those damaged by prenatal alcohol exposure is incarceration.

Adults struggling with this disorder need some immediate help.  Prevention, with its seemingly simple message, is not helpful to those already damaged. And education, learning disabilities and Individualized Education Programs are no longer part of the picture.  Adults with FAS need help in managing their everyday lives; something they cannot do alone.

 Some of the immediate needs in the United States include:

•  Statutory (federal and state) recognition of FAS as a developmental disability in the United States.  Americans with Disabilities Act like protections must be available to those with this scientifically established brain disorder.

• Appropriate housing solutions for the vulnerable victims of FAS. They need structure, supervision, “good” peers, and positive role models. Homes run by L’Arche offer a model of group homes with protections and interaction with many youthful volunteers. Traditional group homes or halfway houses often lead to more problems for people with FAS. Perhaps, even benevolent institutions could be established to help these victims.

• Relevant job training and guidance to see them through their uneven work reality.  My son can work (and wants to work), but he needs an employer that understands his limitations and is willing to work around these challenges, just like many employers work around an employee who is blind or in a wheelchair.

• Caseworker management, so someone is following up with them on a regular basis.  Instead of the punitive probation system, this should involve guidance and support.

• Appropriate day programs for the times between jobs.  Many FAS individuals are not intellectually disabled (because they often have IQ’s higher than the arbitrary threshold of 70) but they still need help managing their free time.  Generally, they will take the suggestions of anyone in their vicinity.  If surrounded by good people, then good things can occur. Music, art, pottery, dance, gardening, and vocational training are all examples of things that should be easily available.

• Training for police, first responders, prosecutors and judges to appropriately deal with all types of disabled people, even people with hidden disabilities. This disability should be a mitigating factor in both the guilt and sentencing phase of any criminal case.

There is very little advocacy for the adult victims of FAS in the United States.  There are no walkathons or galas, no defenders in Congress, no celebrity spokesperson.  Help with managing this complex disorder in adults is non-existent.

Sadly, FAS is not a lovable disability. People with FAS are sometimes very difficult to deal with, especially as they get to adolescence and young adulthood. They are nearly all prone to mental illness (a secondary complication to the primary brain defect).  They are prone to serious alcohol and drug addiction.  They are prone to early sexual activity and, you guessed it, creating their own alcohol-soaked babies (though it is not hereditary). They are much more likely to both commit crimes and become victims of crime. People suffering from FAS also face years and years of denials and appeals when they seek federal Disability benefits.  They frequently encounter an un-informed criminal justice system, despite their rather prolific presence in that realm.

Our Tim has been in jail for nearly six months already and still faces a sentencing hearing next month, when he will probably be sentenced to more incarceration. He did walk into someone’s home in the middle of the night, though with no intent to inflict harm.  He did get into a car (with keys on the seat) and start driving it home. How would society treat an 85-year-old suffering from Alzheimer’s (or a young man with Downs Syndrome) who did the same thing?

I could not help weeping as I came out of the movie Silver Linings Playbook because the first thing I saw as I left the theater was the urban jail where my disabled son currently resides. It was quite a contrast from the rather hopeful ending for the “impaired” main character of that movie.   I hope we can get to a day when all disabilities and disorders, whether hidden or visible, pleasant or difficult, caused by someone’s transgression or caused by something unknown, will be accepted without stigma and those suffering will receive the help they need.

Much of Janet’s experience is reflected in Australia, with there being little support or help available for people with FASD. Last year FARE released the Australian FASD Action Plan that highlighted to Government the actions that need to occur in Australia.