Living with Fetal Alcohol Spectrum Disorder DVD Guide

Transcription

1 Living with Fetal Alcohol Spectrum Disorder DVD Guide Produced by the 2015

2 Living with Fetal Alcohol Spectrum Disorder DVD Guide and accompanying DVD Regina Community Clinic. All rights reserved.

3 Fetal Alcohol Spectrum Disorder, or FASD, is a common and complex disability. For the majority of people with FASD, their disability is invisible, resulting in behaviours that are misunderstood, attributing to the development of negative stereotypes. People with FASD have many talents and interests, however, their abilities are often underdeveloped for a variety of reasons that stem from our lack of understanding of the disability. Tip: When someone has a confirmed diagnosis of FASD it is of great benefit for the individual and their support groups to have access to that information. This information will be useful to develop their strengths and meets needs based upon their abilities, as well as assist with any other co-existing disabilities or health concerns. It is important to not assume someone has FASD because there are other disorders that mimic some of the features of FASD. 1

4 About FASD FASD can only occur when a fetus is exposed to alcohol, though not every pregnant woman who uses alcohol during her pregnancy will give birth to a baby with FASD. Pre-natal alcohol is a risk factor. Current research suggests that nine to 12 individuals per 1,000 are born with FASD. FASD Assessments and Diagnosis To determine if someone has been affected by prenatal drinking, an FASD assessment and diagnosis is recommended. This is a two-part process involving a psychologist and a physician, both of whom are trained in the methods. Other professionals may be involved as well depending upon the situation. During an assessment nine areas (also called domains ) of the brain are examined by a psychologist. At least three of these areas must be found to be impaired by the psychologist (and doctor) and in many cases individuals with FASD have impairment in five to eight areas of the brain. 2

5 The psychological and medical testing look at the following areas: Hard and soft signs (sensory-motor skills, tremors, seizures etc). Small head circumference which indicates that the brain is smaller than average. Cognition: this is the full scale IQ and/or general ability index. It can range from severe intellectual disability to high average scores. Communication: disordered or delayed responses in receptive (receiving and processing information) and expressive language (ability to express thoughts). Academic achievement: inconsistent with IQ level or significant discrepancies in subject areas (i.e. Reading vs. Math) that are not rooted in a learning disability. Memory: auditory, visual, spatial, and short/long term. Executive functioning and abstract reasoning (managing ideas, planning the day, following through, understanding cause and effect, abstract thought). Attention or hyperactivity issues which can be genetic OR related to FASD. Adaptive behaviour/social skills/social communication struggle to understand social cues, adapt to surroundings and situations appropriately. 3

6 In adults we also look at functional abilities that are required to live independently: literacy, numeracy, communication skills, employability, and quality of life. Quality of life factors include basic life skills of hygiene, self care, food preparation, ability to parent successfully, ability to sustain employment, etc. There are often emotional and mental health issues that require special attention. These can include reactive attachment disorders, defiance disorders and emotional dysregulation (inability to manage emotions) and/or mental health disorders (addictions, anxiety, depression, schizophrenia). Finally, many people with FASD live with hidden physical issues as part of their disability. Those issues can include problems with their senses like sight or hearing. They may have other health concerns that include problems with their heart, lungs, digestive system, or kidneys. They may have differences with their skeleton (curvature of the spine or a club foot as examples). They may have poor muscle tone or weakness no matter how hard they work out, or they may have problems with balance and appear 4

7 to be clumsy. They may not gain or lose weight the same way due to metabolic differences. The medical part of the diagnosis can identify these issues. That s a lot of information and you may be asking: What does all this mean? What we want you to accept is simple. FASD is one of the most common and most complex disabilities in the world. It is confusing to professionals, support workers, and to the individuals living with FASD and their caregivers. Medicine and research continue to learn more about FASD each year, providing further information to help understand this disability. This DVD is intended to be used by the individual with FASD along with a caregiver, partner, or worker to help create the best daily routines possible. It is a visual prompt to assist people develop strategies to help in memory and executive functioning. 5