Q: I coordinate services for a young adult woman who has FAS. She has problems with setting personal boundaries and there have been repeated incidents of inappropriate sexual behavior with men and boys. I would like to help set up support services that will keep her safe and help her succeed. She has been getting counseling from a therapist who specializes in sexual issues for people with developmental disabilities. Is this enough?
A: Probably not. Sexual acting out usually is assumed to be a result of sexual abuse and in those cases counseling can be helpful in dealing with unresolved feelings. In persons with FAS disorders, sexual acting out is more often due to neurological dysfunction of the frontal lobes - the executive functions just aren't programmed properly. All the therapy in the world won't change this. This young lady is not likely to have a problem with expressing her feelings. Repression is probably not an issue here.
One mistake people make when they observe sexual acting out with persons with FAS disorders is that they assume there has been sexual abuse. This is not necessarily the case. These individuals are more vulnerable to sexual abuse, but the behaviors are observed even when there has been no sexual abuse at all. This is the nature of FAS and brain dysfunction. The sexual acting out is a result of their social immaturity and poor understanding of social rules, taboos and consequences combined with impaired impulse control.
The therapy might be helpful to some extent, and sexuality classes for youth might help too. But I don't think it will have as much impact as would be expected in other individuals with developmental disabilities.
What works is not going to be easy:
* Explaining her disability to her so she can understand why she has a hard time with impulse control and judgment and getting too close and engaging in inappropriate behavior, so she knows she is not being "bad" but her brain just is not working right. This will help a great deal.
* Role modeling by staff of healthy behavior, with verbalizing to bring it to her attention of why you didn't hug so-and-so, why you stand this far away in line at the store, why you didn't say hello to that man over there, etc.
* Role playing for social situations that are likely to cause problems, to practice the wanted behavior over and over, like how to hug sideways instead of front to front, to form new neural pathways for the appropriate behaviors.
* Discuss with her psychiatrist or prescribing physician the possibility of treatment with an SSRI that could decrease sexual desire. My son is on 90 mg Paxil a day and this has reduced inappropriate sexual behaviors dramatically.
* Set up training for ALL staff who work with this young lady, including therapists, on FAS issues so that everyone understands the neurological origins of the behaviors they see in her.
* Provide close supervision at all times, because the bottom line is that, in spite of all the knowledge and understanding she has about what appropriate behavior is expected of her, the executive functions will still not be working, and without an authoritative figure looking over her shoulder, she is likely to continue to engage in behaviors that could lead to serious consequences. She can understand those consequences, but still not be able to control her impulses when unsupervised.
It is for this reason that my son never goes anywhere unattended (by someone who understands his issues and is committed to not leave his side for one moment). This means that in a restaurant, when my son needs to go to the bathroom, he is escorted there to prevent any opportunities he might have of making a pass at a waitress on the way. It's kind of funny, but not really. My son knows what the laws are about sexual assault and sexual harrassment, but he does not always realize that his inappropriate flirting and hugs could be grounds for arrest. He knows this, but he does not always think "cause and effect" at the time, or if he does think of that, he ends up doing whatever he feels compelled to do anyway, taking the chance that maybe this time he won't get in trouble.
We use imposed consequences (loss of privileges) for inappropriate behavior. In fact, this issue is so important that it is the only one for which we have set up consequences. The loss of privileges is imposed on the same day as the offensive behavior, or it is not effective. Even with consistent use of consequences and consistent reporting by staff of behavior issues, the behavior continues. The consequences are not as effective in people with FAS disorders, but they still need to be set up and followed.
Be very careful of reasonable expectations. She has the body of a woman and the social skills of a 6 year old (or thereabouts). I cannot change the cause of my son's problem behaviors (permanent brain damage). I can only change his environment and help avoid situations that might set him up for failure.
I don't know what kind of employment situation she has, but if she has full FAS and is in the social services system, she is likely to qualify for federal SSI benefits. Through SSI, my son has a placement in a more protective environment with a job coach that is with him every minute, and he works in a small group and has little opportunity to interact with the public.
He does have lots of social opportunities, at work and away from work, where he can interact with friends of both sexes, but he is ALWAYS supervised and everyone who works with him or around him understands his issues. This has been the real key to success.
Sex is still a taboo subject in our society, and so parents are often afraid to bring it up with professionals, and professionals are not always aware of what a common problem this is for individuals with FAS disorders.
Teresa Kellerman
www.fasstar.com