As individuals with FASD age, they are presented with new developmental challenges in their day to day lives. Infancy, childhood, adolescence, and adulthood are unique periods of development that are associated with differing expectations and support needs for the affected individual and their family.
Infants and Toddlers
Infants and toddlers with FASD may present with a variety of developmental challenges including feeding difficulties, sleep difficulties, difficulties regulating their internal state (e.g., prolonged crying), sensory sensitivities (e.g., light, sound), and delays in achieving motor and language developmental milestones (e.g., walking, talking).1 Caregivers may need to work closely with their family physician or pediatrician to identify and address the medical and developmental needs of their child. Children should be screened for hearing and visual impairments, and referrals to specialized services may be indicated depending on the child’s unique needs. At this stage in life, occupational therapy, speech-language therapy, and/or attachment-based therapy may be indicated.
Having a school-aged child with FASD presents with new challenges, primarily those associated with behavioural management, education, and social development. Routines, structure, and clear and constant expectations are important in both the home and school environments. Caregivers may need assistance developing and implementing parenting strategies to manage more problematic behaviours (e.g., aggression). Caregivers may seek a referral to access occupational therapy, behavioural therapy, or parent training programs in order to help address more extreme behavioural problems and develop environmental supports.
Individual cognitive and learning needs of school-aged children with FASD should be identified through a comprehensive psychoeducational or neuropsychological assessment. Results from this assessment, particularly the child’s specific profile of strengths and weaknesses, should be used to inform planning in the home and school environments.2 A referral for a comprehensive assessment can be accessed through a health care provider or through the child’s school board. Children with FASD may present with a number of impairments that qualify them for extra support in school, including intellectual disabilities, impairments in communication/language, learning disabilities, attention problems, and/or behavioural issues.3-6 Individuals with FASD often require accommodations, modifications and/or special education services in school,6-8 all of which should be documented in an individual education plan (IEP). Regular communication and planning with the child’s school team can be particularly useful to monitor the child’s academic and social development, and to aid with problem-solving regarding new challenges.
School-aged children with FASD often have difficulties making or keeping friends,6 and thus, extra effort and support may be required to foster positive peer relationships. Try to regularly talk to you child about his/her friendships and bullying. Participation in structured recreational clubs or teams may facilitate the development of positive peer relationships; however, the child’s specific strengths and weaknesses, as well as their developmental level must be considered when choosing such extracurricular activities. Caregivers can also look into accessing social skills training programs offered at local mental health agencies or hospitals.
Mental health concerns also tend to arise in childhood and adolescence.5-6,8-10 Higher rates of attention-deficit/hyperactivity disorder (ADHD), conduct disorder, oppositional defiant disorder, depressive disorders, and specific phobias have been documented in children/youth with heavy prenatal alcohol exposure when compared to controls.9 Accessing formal assessment and intervention/therapy services from a multidisciplinary team of mental health professionals (psychiatry, psychology, social work, etc.) can be critical to address mental health concerns in children and youth with FASD. The use of psychotropic medication may also be considered.2 At this stage in life, appropriate services can often be accessed through local hospitals, specialized FASD diagnostic clinics, local mental health agencies, social service agencies, and school boards.
Information about mental health services in your region of Ontario can be obtained by calling the Mental Health Helpline at 1-866-531-2600. This is a free and confidential telephone service that is funded by the government (www.mentalhealthhelpline.ca).
Adolescence is a particularly difficult developmental period to navigate for individuals with FASD. Research has documented high rates of a variety of adverse outcomes experienced by adolescents with FASD including mental health problems, academic disengagement, trouble with the law, inappropriate sexual behaviours, and alcohol and/or drug problems.6, 8, 10
Increased independence and responsibility in the home, school, and community is often expected by others and desired by youth; however, deficits in problem-solving, organization, planning, and other cognitive skills3-4, 6 make achieving typical levels of autonomy in adolescence difficult. Routines, structure, and clear and constant expectations in the home and school continue to be important during this developmental stage. Although parental support and monitoring of youths’ activities is important, youth also need to be given the opportunity to gain autonomy and practice independent living skills. Caregivers can help youth develop skills necessary for independent living, such and banking and food shopping, via instructional scaffolding, modelling, hands-on practice, and repetition.
When transitioning to high school, an updated assessment of the youth’s cognitive and learning needs can be helpful to aid in classroom placement and ensure appropriate educational supports are put in place. Youth may need specific assistance with organizing their workspace and workload, initiating and planning larger independent projects, and keeping deadlines.6 Consistent use of an agenda or daily planner can help in this regard.
It is important to discuss with youth difficult topics such as sexuality and drug/alcohol use in a clear and concrete manner. Try to create a safe and non-judgmental environment that promotes sharing of more personal issues. A visit to the family physician or a local sexual health clinic may be necessary to further educate youth regarding sexual and reproductive health. Peer and romantic relationships are also of paramount importance during adolescence. Try to get to know the peers with whom your child is spending his/her time.
Like adolescence, transitioning into adulthood is often extremely difficult for individuals with FASD due to the increased responsibilities and expectations of independence across domains of life. Some individuals with FASD may never be able to live independently and most will require some form of life-long support.11 Research has consistently found that adaptive functioning or daily life skills are impaired in individuals with FASD, above and beyond what is expected based on deficits in intellectual functioning.6, 8, 10, 12 The ability to function independently in everyday life is impaired in individuals with FASD, as they often present with a variety of deficits across cognitive domains,3-4 along with mental health issues.5-6,8-10, 13 Alcohol or drug dependence and mood disorders appear to be a particular concern in adults with FASD.13 Adults with FASD may need assistance with accessing transportation, finding and maintaining housing, finding and maintaining employment, managing finances, housekeeping, planning and preparing meals, managing their health, and family planning. An updated psychological assessment conducted in late adolescence or early adulthood can be helpful to document social, emotional, cognitive, and daily living needs.2
Some individuals may meet the criteria for income and employment support from the Ontario Disability Support Program (www.mcss.gov.on.ca/en/mcss/programs/social/odsp/) or other more extensive services and supports from Developmental Services Ontario (www.dsontario.ca/). It is important to contact these government funded support programs to inquire about eligibility for services (see Financial Aid/Planning for more information). Eligibility for access to case management services from local organizations should also be explored.2 Intervention services for drug/alcohol use and mental health issues can be located through the Mental Health Helpline (1-866-531-2600).
Lifespan Transition Resources
- Tao, Temple, Casson, and Kirkpatrick (2013) developed an excellent resource entitled Health Watch Table – Fetal Alcohol Spectrum Disorder, which provides a number of recommendations to address common issues (e.g., adaptive daily living) experienced by children and adults with FASD. Developmentally specific recommendations are given for children and adults, where appropriate. This is one of several Health Watch Tables from the Developmental Disabilities Primary Care Initiative. This document can be retrieved from: www.surreyplace.on.ca/Documents/HWT_FASD_2013_Nov_2013.pdf
- A transition timeline, developed by the Neurology/Neurosurgery programs together with the Good 2 Go Transition Program at The Hospital for Sick Children, provides tips regarding how to encourage development in specific areas of life (e.g., social, self-care) across the lifespan for individuals with neurological issues. General tips found on this timeline may be applicable to individuals with FASD and can be used as a guideline for caregivers; however, the child’s individual developmental level must always be taken into consideration. This resource can be retrieved from: www.sickkids.ca/pdfs/Good2Go%20Transition%20Program/38913-Neuroscience-Timeline%20handout.pdf
- The Good 2 Go Transition Program at The Hospital for Sick Children also developed a Complex Care Transition Resource Guide for families caring for adolescents with complex needs. This document provides Ontario-specific information about support services for adults, funding programs, and transition planning resources. It also outlines specific steps to take in order to access various adult resources and supportive programs.This resource can be retrieved from: http://www.sickkids.ca/pdfs/Good2Go%20Transition%20Program/45804-CCRWebsiteOctober.pdf
Other helpful transition resources developed by the Good 2 Go Transition Program at The Hospital for Sick Children can be retrieved from:
- Connections: A Guide to Transition Planning, developed by Rae Roebuck and Judy Coultes-MacLeod of First Leadership Limited, is an extensive guide to transition planning from childhood to adulthood for caregivers of children with a developmental disability. This guide includes information on transition planning in the home, school, and community, provides specific tools, templates, and guidelines to aid in the transition planning process, and provides an extensive list of relevant resources, some of which are specific to the Greater Toronto Area. This resource can be retrieved from: www.surreyplace.on.ca/Documents/Transition%20Planning.pdf
- Jodee Kulp and Cathy Bruer-Thompson developed a helpful resource entitled 15 Tips For Facilitating Liftoff for Youth Diagnosed with FASD, which includes specific tips for aiding the transition of youth with FASD into adulthood. Although some of the information and advice contained in this document is specifically geared towards transitioning youth with FASD living in Minnesota, many of the concepts and issues described are also relevant to transiting youth with FASD living in Ontario. This resource can be retrieved from:https://extranet.dhss.alaska.gov/comm/jmt/BTKH%20WG/resources/FASD%20Resources/Braided%20Cord%20Materials/15_Tips_for_Facilitating_FASD.pdf
Other potentially helpful information related to transition planning and FASD can be retrieved from the following links:
Developed by: Michelle Todorow, MA, and FASD ONE Intervention and Support Committee Updated: January 4, 2014
1. Mann, T., Shea, K, & Baldwin, S. (n.d.). Intervention strategies for infants and toddlers with fetal alcohol spectrum disorder. Retrieved from http://faimh.org/resourceFiles/resourceFile _50.pdf
2. Tao, L., Temple, V., Casson, I., & Kirkpatrick, S. M. L. (2013). Health watch table – fetal alcohol spectrum disorder. Surrey Place Centre, Toronto, Ontario. Retrieved from http://www.surreyplace.on.ca/Documents/HWT_FASD_2013_Nov_2013.pdf
3. Mattson, S. N., Crocker, N., & Nguyen, T. T. (2011). Fetal alcohol spectrum disorders: Neuropsychological and behavioural features. Neuropsychology Review, 21, 81-101.
4. Davis, K., Gagnier, K., Moore, T., & Todorow, M. (2013). Cognitive aspects of fetal alcohol spectrum disorder. Wiley Interdisciplinary Reviews: Cognitive Science, 4(1), 81–92.
5. Burd, L., Klug, M. G., Martsolf, J. T., & Kerbeshian, J. (2003). Fetal alcohol syndrome: neuropsychiatric phenomics. Neurotoxicology and Teratology, 25(6), 697–705.
6. Todorow, M. (2011). A follow-up of Canadian adolescents with fetal alcohol spectrum disorder: Identifying long-term outcomes, treatment needs and access to services (Master’s thesis). Retrieved from ProQuest Dissertations and Theses database. (Order No. MR80432)
7. Streissguth, A. P., Aase, J. M., Clarren, S. K., Randels, S. P., LaDue, R. A., & Smith, D. F. (1991) Fetal alcohol syndrome in adolescents and adults. The Journal of the American Medical Association, 265(15), 1961–1967.
8. Streissguth, A. P., Barr, H. M, Kogan, J., & Bookstein, F. L. (1996). Understanding the occurrence of secondary disabilities in clients with fetal alcohol syndrome and fetal alcohol effects: Final report to the Centers for Disease Control and Prevention (CDC) (Tech. Report #96-06). Seattle, WA: University of Washington Publication Services.
9. Fryer, S. L., McGee, C. L., Matt, G. E., Riley, E. P., & Mattson, S. N. (2007). Evaluation of psychopathological conditions in children with heavy prenatal alcohol exposure. Pediatrics, 119(3), e733–e741.
10. Streissguth, A. P., Bookstein, F. L., Barr, H. M., Sampson, P. D., O’Malley, K., & Young, J. K. (2004). Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. Journal of Developmental Behavioural Pediatrics, 25(4), 228–238.
11. Spohr, H. L., Willms, J., & Steinhausen, H. C. (2007). Fetal alcohol spectrum disorders in young adulthood. Journal of Pediatrics, 150(2), 175–179.
12. Whaley, S. E., O’Connor, M. J., & Gunderson, B. (2001). Comparison of the adaptive functioning of children prenatally exposed to alcohol to a nonexposed clinical sample. Alcoholism: Clinical and Experimental Research, 25(7), 1018–1024.
13. Famy, C., Streissguth, A. P., & Unis, A. S. (1998). Mental illness in adults with fetal alcohol syndrome or fetal alcohol effects. The American Journal of Psychiatry, 155(4), 552–554.