Welcome to Day 31 of our 99 day journey to September 9, FASDay. Today starts a series of FASD myths and facts.
Our own experience agrees with the above. We went to many different therapists over the years. Many didn’t understand the brain difference and thus therapy failed.
The maiden had a fabulous doctor at one stage – she was also a psychologist and specialized in FASD. Unfortunately she moved across the country and no one took over her practice. Seven years later we are still waiting for a specialist who can help guide her and monitor her medications – because I do believe her meds need adjusting.
In the end, I just try to read and learn as much as I can and help as I can while trying to access services.
Great Comment from Jodee Kulp (Red Shoes Rock):
We have seen neurodevelopment plus nutritional interventions work repeatedly to sooth and connect new pathways, however you are right the brain is cellularly different so to use strategies that work for TBI/Stroke are not fair to the person – to expect nuerotypical is not fair – but to embrace nuerodiversity in love – fun – play and learning we have been astounded. – Jodee Kulp
2018 Update: I am not a medical professional and cannot provide any advice. Always speak to a licensed and respected health care professional.
I found Addressing FASD in Treatment on the website for The National Center for Biotechnology Information. It is an excellent and thorough publication I would encourage you to read and suggest professionals you work with read as it includes a wealth of information on Fetal Alcohol Spectrum Disorder as well as tips on modifying treatment plans specific to a person with FASD.
Excerpts from the publication re. Therapy and Interventions:
Although the evidence base for effective substance abuse/mental health interventions with individuals who have or may have FASD is limited (Premji, Benzies, Serrett, & Hayden, 2006; Paley & O’Connor, 2009), research has demonstrated that this population can and does succeed in treatment when approaches are properly modified, and that these modifications can lead to improved caregiving attitudes and reduced stress on family/caregivers as well as providers (Bertrand, 2009).
Section 4: Tailoring Treatment for Individuals with FASD
This section will discuss appropriate approaches to modifying treatment and/or making necessary accommodations for clients who exhibit indicators suggesting FASD, or who show cognitive and behavioral barriers to treatment success, as identified in Steps 1 and 2 of this chapter.
This discussion is divided into two sections:
1) general principles for working with individuals who have or may have FASD (regardless of age), and
2) specific considerations for adolescents who have or may have FASD.
The chapter then moves on to Step 5, Working With the Family, and Step 6, Transition and Connection to Community Supports.
The section on Counseling Strategies breaks down each of the following suggested strategies:
Due to the cognitive, social, and emotional deficits seen in FASD, counseling clients with these conditions requires adaptability and flexibility. Research data, clinical observation, and caregiver reports all suggest that it is crucial to tailor treatment approaches. Traditional approaches may not prove optimally effective, and more effort may be needed to convey basic concepts and promote a positive therapeutic relationship and environment.
The following were recommendations designed to help providers:
- Set appropriate boundaries;
- Be aware of the client’s strengths;
- Understand the impact of any abuse the client has experienced;
- Help the client cope with loss;
- Address any negative self-perception associated with an FASD;
- Focus on self-esteem and personal issues;
- Address resistance, denial, and acceptance;
- Weigh individual vs. group counseling;
- Consider a mentor approach; and
- Assess comprehension on an ongoing basis.
Medication as Treatment
Although not therapy related, medications are a reality for some. I was at a workshop recently and a keynote speaker, Dr. Susan Rich, was speaking about medication and how many medications prescribed for people with FASD do not work as they do for mainstream.
The maiden is seeing a psychiatrist right now, who has been adjusting her medications, but I am not sure she truly understands FASD, so am still looking for a professional that does understand how her brain and meds mix.
If you are interested in reading more about medications and Fetal Alcohol Spectrum Disorder, here are some articles I found:
The above article is from 2005 (so some of the language is outdated) but if you know of a recent study, please leave a comment so I can update this page. From the above article:
There is a problem in discussing Psychotropic Medications and FASD because there is only one published prospective study on the subject, as far as I know. It relates to psychostimulants and ADHD in FASD children. All other references are retrospective and anecdotal. This is not surprising since FASD is not included in the Diagnostic and Statistical Manual of Mental Disorders and so is rarely considered by physicians who prescribe psychotropic medications.
The information contained in the article above was:
gathered from medical experts who have successfully treated children and adults with Fetal Alcohol Spectrum Disorder (FASD) …with or without other neurological disorders like obsessions, compulsions, aggression, that interfere with the person’s ability to function in life. Behavior problems are due in part to imbalance of chemicals in the brain caused by prenatal exposure to alcohol.
I also found an article called Team to develop first medication guidelines for FASD taking place at the University of Saskatchewan (Canada).
The idea is to examine the various complications that people with FASD face, such as inattention, difficulty planning, challenges in relational situations, and issues with mood and sleeping.
Then, the group will recommend medical guidelines instructing doctors what to prescribe “so that when a physician says to his patient, ‘I need you to take this medicine,’ they’re going to be doing it from an informed position,” Dr. Mansfield Mela, head of the psycholegal and FASD research lab at the U of S, told CBC Radio’s Saskatoon Morning.
I contacted the University to see if there was any follow-up or a report of results or next steps as it sounds promising. And while the only response I got was that my enquiry had been sent to the research team, I have seen information on the algorithm so I know the study is underway.
I gave a copy of the algorithm to the maiden’s psychiatrist, but sh3 didn’t seem interested. So once again, professionals fail to take the lived experience of patients with FASD and their caregivers. It’s disheartening to say the least.
Dr. Manfred Mela is the lead researcher developing the first-ever psychotropic medication algorithm for FASD. The expert panel is in the final phase of development for the algorithm and it will be widely available as soon as possible. If you would like to request more information, please contact email@example.com
Again, I am not a medical professional. I am sharing my journey and providing links to information I feel is from credible sources. ALWAYS seek out professional guidance.
Check back tomorrow for Day 32!