Question: I would appreciate your input on how mental health services can be delivered appropriately and effectively. The horror stories are numerous. What I want the providers that will be there to take away, are strategies that will help as well as what to avoid.
Answer: Tell the horror stories. They are not rare, they are a common occurrence. We need to learn from our mistakes.
Anyone who provides services or is in a decision making position regarding treatment for a child with FAS must be thoroughly educated about FASD before they have any input. This training should include information on research by Dr. Ed Riley on FAS and the Brain, so that they understand the neurological origins of most of the behaviors. (They have all received years and years of education about the psychological causes, and sometimes forget that this is only part of the picture.) Part of the training should include input from parents like yourself on what works and what doesn't work. Perhaps professionals could be certified in FASD and Mental Health. They need to know Streissguth's work inside and out.
The professionals need to educate themselves beyond classic FAS to include the entire Fetal Alcohol Spectrum Disorders (FASD). Specifically, they need to become familiar with Dr. Riley's work on PEA (kids prenatally exposed to alcohol) who do not have the physical symptoms but have all the behavioral problems as kids with full FAS diagnosis.
If the professional has a good understanding of FAS and FASD, the parents will appreciate that and will be capable of trusting the professional. If the family cannot trust the professional, there will be no teamwork, and the parent could be left out of the communication loop, thereby missing the most important input into what the child needs.
The professionals need to know that their experience with one or two individuals with FASD cannot be applied to future cases. FASD has such disparity of behavior issues - some have ADHD, some do not; some are aggressive, some withdraw; some do well on stimulants and SSRIs and some do not. The individuals who have FASD/RAD/Bipolar are wired differently from those with FASD/Depression and require a totally different approach, both with medications and with behavior management.
In all cases, "behavior management" should focus on changing the environment rather than attempting to change the child.
The professionals need to never forget that almost always, the individual presents as being more capable than he/she really is, and that the ability to function varies from day to day, from moment to moment, and cannot be easily predicted. Dr. Riley's studies indicate that the social developmental may be stunted at the 6-year-old level.
The professionals need to be careful about making assumptions about the home and family, as in most cases, the child's behavior may LOOK like poor parenting, but is actually lack of impulse control and poor judgment and forgetting what they learned. Sometimes parents can benefit from learning better parenting skills, but the professional needs to be very careful in how this is presented, as most parents have heard over and over that their child's problems are caused by bad parenting and they are justifiably defensive. They can simply say to the parent, "Well that didn't work, let's try a different approach."
The statistics I make sure they hear are from Streissguth's secondary disabilities, which I remind them are preventable, IF everyone in the service provider system recognizes the problem and offers appropriate support services. Most adults with FASD suffer from clinical depression. 23% of them have attempted suicide, and almost half contemplate suicide as the solution to their problem. I believe that if we remember what was taught to us by Dr. Calvin Sumner, we can protect our kids from becoming another statistic. Dr. Sumner said, "The greatest obstacle our kids have to overcome is chronic frustration from trying to live up to the unrealistic expectations of others." We can only expect the individual with FASD to recover from mental health problems and function well in their community IF we provide appropriate LONG-TERM support services, including 24/7 mentoring where indicated. We cannot get them on their feet, then step back and say, "You're doing so well, we are going to discontinue meds (or placement or mentor or job coach, etc.). When we let go, they fall.
I would be happy for you to share my SCREAMS model of intervention strategies, if you want.