How Do I Talk To My Teen About His FASD Diagnosis?

Q:  Our son received a diagnosis of FAS a long time ago, but I just filed it away and didn't mention it to anyone.  I thought that a loving home would overcome any problems.  I am now coming to terms with the reality of his disability.  As he gets older, the gaps become more obvious, and I realize I need to accept that my son has a disability that will lead to sure destruction if we don't face it and apply the intervention strategies you suggest on your web page.  My biggest challenge right now is how to talk to him about this and not let him start using the diagnosis as an excuse for his behaviors. Any suggestions?

A:  What if one of your children were diagnosed with diabetes? or lymphoma? or a heart murmur?  It is possible that a child might use the diagnosis as an excuse to not participate in sports, or not complete schoolwork. But as a wise and loving mom, you would guide the child to make a wise decision. When the diagnosis is related to mental functioning, there is sometimes shame and embarrassment in some families, but this does not have to be the case in your family. If a teenager were diagnosed with Schizophrenia, it would not be fair to withhold that information for fear the child would use it as an excuse to not live a full life. 

You can share information about FASD the same way you would share information about a heart defect, with open and honest information, ready to answer questions as he is able to comprehend the answers. FAS is an information processing disorder, it is physiological, not behavioral, although the brain dysfunction does affect behavior. Believe me, most teens and adults who finally are told the truth are relieved - they know now that it's just that their brain doesn't work right, and they don't feel like the "bad kid" or "the problem" anymore. 

Make some assessments about your child's ability to function based on past situations and note how that was related to the various factors listed in "executive functions" on the article/brochure about FAS and the Brain. Read the brochure/article "Visible Teen" and discuss the similarities that are recognized. Let him know that you will still impose consequences and will still hold him accountable, but only as far as he is able. The ability to control behavior will be dependent on many factors, including medications (Adderall and Paxil work best for classic FAS) and diet (no additives!) and environment (avoid chaos, noise, crowds). 

Success also depends on adequate supervision at all times that are high risk (in public, with friends, etc.) Some parents have to install alarms on the bedroom window because teens cannot control the impulse to go out in the middle of the night to be with "friends." You can promise to keep him safe so that he can have a good quality of life. You can explain why you need to tighten up restrictions and limit freedoms, because you don't want him to come to harm. He is very vulnerable to being hurt by others, emotionally and/or physically, and he is also at risk of becoming a perpetrator. That's not his fault, and you would not punish him for that, but just let him know you will do your best to keep him safe from his disability. 

Naming it and looking at it as something separate from him as a person might help. Some days my son John is just John, and other days the FAS rears it's head and tries to take control. John will say his brain is not working right on those days, and I will do what I can to help keep him safe until he is in control of his behavior again.  Acceptance is crucial for a child's success during the years of approaching adulthood.  Read the article "AAAs of FAS" for more on the importance of acceptance.

What I always say is "FAS is an explanation, not an excuse." You don't send a teen with FAS out into the world and say "Don't get into trouble!"  You wouldn't send grandpa with Alzheimer's out on a walk and say "Don't get lost" or tell a person with Epilepsy "Don't fall down." You will see the term "External Brain" for the person with FASD, and that means YOU, or your husband, or responsible sibling, or some other trusted authority figure. I am giving a presentation this Friday on FAS and Behavior. One person attending has 100% hearing loss. It would be unreasonable to expect her to learn everything as well as those who can hear. She will need an interpreter, and even then, she will not get 100% of what I teach the others. This is how it is with our kids. They need us to interpret the world for them.

FAS Community Resource Center