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Fetal Alcohol Spectrum Disorder

Incidence of Alcohol Abuse in Families:

Based on the United States Substance Abuse and Mental Health Services Agency's, (SAMHSA) (1) , National Household Survey on Drug Abuse (NHSDA) (2) , more than 6 million children lived with at least one parent who abused or was dependent on alcohol or an illicit drug during the year 2000. (3)

This involved about 10 percent of children aged 5 or younger, 8 percent of children aged 6 to 11, and 9 percent of youths aged 12 to 17.

Based on SAMHSA's National Survey on Drug Use and Health (NSDUH), in 2002 almost 5 million adults were alcohol dependent or abusing alcohol and had at least one child younger than age 18 living in their home. Parents with past year alcohol dependence or abuse were more likely to report household turbulence than parents who were not alcohol dependent or alcohol abusing. Household turbulence included people in their household having serious arguments and often insulting or yelling at each other.

Past year illicit drug use was higher among alcohol dependent or alcohol abusing parents. For example, 26% of past year alcohol dependent or alcohol abusing parents used marijuana in the past year compared with 7% of the parents who were not dependent on or abusing alcohol in the past year. (4) Research has documented that children with substance-abusing parents are more at risk than their peers for alcohol and drug use, delinquency and depression, as well as poor school performance. (5)

The results indicate that a large number of children are at risk because of parental drug use, including a sizable number of children who are living in the household with a parent who uses illicit drugs, meets criteria for substance dependence and/or shows a need for illicit drug abuse treatment. An estimated 4 million of the 75 million children represented, or 6%, had at least one parent who was in need of illicit drug abuse treatment. About 3 million children (4%) lived with at least one parent who was dependent on illicit drugs, while 6 million (8%) lived with at least one parent who was dependent on alcohol. About 11 million children (14%) lived with at least one parent who reported past-year illicit drug use, and more than 8 million (11%) lived with at least one parent who reported past-month illicit drug use. A larger percentage of younger children than older children live in a household where one or both parents use illicit drugs.

Past-month illicit drug use by parents involves approximately 12% of children younger than age 2, compared with 10% of children between the ages of 14-17. The corresponding numbers for past-year illicit drug use are 16% and 12%, respectively. This finding is most likely driven by the fact that younger parents are more likely than older parents to use illicit drugs and also tend to have younger children. (6) (7)

The rate of FASD in North America is conservatively estimated to be 1/100 or 1% of the population (combination of full FAS and Partial Fetal Alcohol Syndrome [PFAS] and Alcohol Related Neurodevelopmental Disorder. [ARND] ). (8) About twenty babies are born with FASD each day in Canada. (9)

However, in the Native American (10) community, the incidence of FAS has been estimated to be 7-16% and could be even higher. (11) Many are not diagnosed. A 1998 study by the BC FAS Resource Society estimated that the prevalence of FAS/FAE in high risk populations, including First Nations and Inuit communities, might be as high as 1 in 5. (12)

In 2003, the average per capita sale of alcohol in Canada was 104.2 litres, while in the Yukon, it was175.6 liters. (13) Although highly variable among tribes, alcohol abuse is a factor in five leading causes of death for American Indians, including motor vehicle crashes, alcoholism, cirrhosis, suicide, and homicide. Mortality rates for crashes and alcoholism are 5.5 and 3.8 times higher, respectively, among American Indians than among the general population.

About 20% of Native Americans aged 12 and older used an illicit drug in the past year (versus 12% in the total U.S. population), and about 7.8% were in need of illicit drug abuse treatment (versus 2.7%). (14)

In 2002, SAMHSA received reports of 39,463 American Indian / Alaska Native substance abuse treatment admissions. (15) The percentage of American Indian or Alaska Native admissions entering treatment for illicit drugs increased from 23.6% of all American Indian or Alaska Native admissions in 1994 to 37.1% of all such American Indian or Alaska Native admissions in 2002. American Indian /Alaska Native substance abuse treatment admissions were more likely to initiate substance use at age 14 or younger (46% vs. 32%) compared with all other racial / ethnic groups. (16) Among tribes with high rates of alcoholism, reports estimate that 75 percent of all accidents, the leading cause of death among American Indians, are alcohol related. (17)

SAMHSA's 2002/2003 National Survey on Drug Use and Health also provided data on three categories of risk factors for substance use among American Indian or Alaska Native youths: individual/peers, family, and school.

"Based on 46,310 respondents aged 12 to 17, (18) representing a national population of 25 million youth. Nationally, there are an estimated 183,000 American Indian or Alaska Native youths aged 12 to 17. " "American Indian or Alaska Native youths were more likely than other youths to:

• Perceive moderate to no risk associated with substance use,
• Perceive their parents as not strongly disapproving of their substance use, and
• Believe that all or most of the students in their school get drunk at least once a week.

According to American Indian or Alaska Native youths, their parents were about as likely as those of other youths to:

• Talk to their child about dangers of substance use,
• Let the youth know they had done a good job,
• Tell their youth that they were proud of something they had done,
• Make their youth do chores around the house or to limit the amount of time watching TV.

However, parents of American Indian or Alaska Native youths were less likely to provide help with school homework or to limit the time out with friends on school nights. " (19)

American Indian or Alaska Native youths were also less likely than other youths to participate in youth activities or regularly attend religious services. (20)

But again, the problem crosses all racial lines. About 70% of pregnant Canadian women of all racial groups seem to be able to remain abstinent from the time they know of the pregnancy. 30% will continue to abuse alcohol during the pregnancy. 20% will drink too much to keep the baby healthy. They need support. But 7-12% will not make it through. They will probably use alcohol every day. Many of these women are homeless or abused, have disabilities, including FAS, themselves, and have no social supports. It's the adults on the edge of the community that no one wants to be around. Alcohol is a steady part of their lives, but they won't confess the use. They are afraid of being punished. (21) Many women with mental health issues and cognitive disabilities, or have been abused, work the street trade and cognitive disabilities drink more. They drink to cope and self medicate. Men, on the other hand, frequently drink more when they have ADD. (22)

What is needed to improve this situation is individuals willing to step out of the box and come alongside families as advocates and mentors to both those suffering with alcohol consumption and those suffering from alcohol exposure. The need for advocacy should not be taken lightly:

Disturbing Statistics from one Study

In a study conducted by the University of Washington on 473 FASD clients, (23) the following results were noted (In all evaluations, a score of 100 is considered to be normal):

• 178 clients (almost 38%) were diagnosed with full FAS and had an average IQ of 79. Average Reading score was 78; Average Spelling score was 75; Average Math score was 70; Average Adaptive Behavior Score was 61.
• 295 clients (over 62%) were diagnosed as having FAE, medically referred to as Alcohol Related Neurological Disorders, and had an average IQ of 90. Average Reading score was 84; Average Spelling score was 81; Average Math score was 76; Average Adaptive Behavior score was 67.

Of these clients, 415 were selected for a life history questionnaire and these were the results:

• Mental Health Problems were by far the most prevalent secondary disability experienced over the entire age sample (90%). (Ages 3-51 years). As high as 94% have at least one co-morbid diagnosis in adulthood. (52% Depression, 43% Suicide Threats, 40% ADHD, 33% Panic Attacks, 29% Psychosis, 23% Suicide Attempts). (24)
• The following results were found for those age 12 and older:
  • Disrupted school experience (defined as having been suspended or expelled from school or having dropped out of school) was experienced by 60% of the clients.
  • Trouble with the law (defined as ever having been in trouble with authorities, charged or convicted of a crime) was experienced by between 24 to 60% of the clients. (25)
  • Confinement (including inpatient treatment for mental health problems or alcohol/drug problems, or ever having been incarcerated for a crime) was experienced by almost 50% of the clients.

90 clients age 21 and older were selected for questions about self-sufficiency or independent living skills.

• 80% of the clients, age 21 and older, were not self sufficient in the areas of
  Getting Dressed, Using Public Transportation, Personal Hygiene, Staying Out of Trouble, Structuring Leisure Time, Cooking Meals, Grocery Shopping, Interpersonal Relationships, Getting Medical Care, Getting Social Services, Making Decisions, and Managing Money
• 80% of the 90 adults age 21 and over were still having employment problems that dealt with Lying, Problems with Supervisor, Anger Management, Unreliability, Social Problems, Poor Judgment, Poor Task Comprehension, and Easy Frustration.

(Clients with FAE or Alcohol Related Neurological Disorders have a higher rate of ALL secondary disabilities except for mental health problems.) (26)

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1. SAMHSA, An agency of the United States Department of Health and Human Services, and is the lead agency for improving the quality and availability of substance abuse prevention, addiction treatment, and mental health services in the United States.

2. SAMHSA's survey defined abuse and dependence using criteria in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) which includes such symptoms as physical danger, trouble with the law due to substance use, increase tolerance, and interference in everyday life during the past year.

3. United States, Dept. of Health and Human Services, SAMHSA, "Children Living with Substance–Abusing or Substance–Dependent Parents, Highlights," The NSDUH Report, June 2003, Online article, 22 Mar. 2005 <http://oas.samhsa.gov/2k3/children/children.htm >

4. United States, Dept. of Health and Human Services, SAMHSA, "Alcohol Dependence or Abuse Among Parents with Children Living in the Home, Highlights," The NSDUH Report, June 2003, Online article, 22 Mar. 2005 <http://oas.samhsa.gov/2k4/ACOA/ACOA.htm>

5. Moss et al., 1995; Gfroerer and De La Rosa, 1993; Gfroerer, 1987; Gross and McCaul, 1987; Johnson et al., 1989; West and Prinz, 1987; Werner, 1986; Clair and Genest, 1984 inside United States, Dept. of Health and Human Services, Lynn X. Huang, Felicia G. Cerbone and Joseph C. Gfroerer "Children at Risk Because of Parental Substance Abuse, Highlights," The NHSDA Report, May 2003, SAMHSA, Office of Applied Studies, Online article, 26 Mar. 2005 http://oas.samhsa.gov/NHSDA/Treatan/treana08.htm#Intro

6. Moss et al., 1995; Gfroerer and De La Rosa, 1993; Gfroerer, 1987; Gross and McCaul, 1987; Johnson et al., 1989; West and Prinz, 1987; Werner, 1986; Clair and Genest, 1984 inside United States, Dept. of Health and Human Services, Lynn X. Huang, Felicia G. Cerbone and Joseph C. Gfroerer "Children at Risk Because of Parental Substance Abuse, Highlights," The NHSDA Report, May 2003, SAMHSA, Office of Applied Studies, Online article, 26 Mar. 2005 http://oas.samhsa.gov/NHSDA/Treatan/treana08.htm#Intro

7. This report takes advantage of nationally representative data from the 1996 NHSDA to obtain estimates of the number of children potentially affected by parental substance use and abuse. The focus is on biological, adoptive, step and foster children under 18 years of age living with one or both parents.

8. May and Gossage, "Estimating the Prevalence of Fetal Alcohol Syndrome," Alcohol Research & Health, The Journal of the National Institute on Alcohol Abuse and Alcoholism, Vol. 25, Num. 3, 2001; Sampson, Streissguth, Bookstein, Little, Clarren, Dehaene et al, "Incidence of Fetal Alcohol Syndrome and prevalence of alcohol related neurodevelopmental disorder," Teratology, 1997, in handout from "Moving Forward with FAS," Community seminar, sponsored by "Baby Biz," Lou Soppit Community Center, Rocky Mountain House, Alberta, 18 Mar. 2005.

9. Carol Kraft, RN, "Moving Forward with FAS," Community seminar, sponsored by "Baby Biz," Lou Soppit Community Center, Rocky Mountain House, Alberta, 18 Mar. 2005.

10. The term "Native American" is defined as persons having origins in and maintaining cultural identification with any of the original peoples of North America, including American Indian tribes and Alaskan Natives, SAMHSA, online article, 26 Mar. 2005, <http://oas.samhsa.gov/NHSDA/Ethnic/ethn1006.htm#E10E2>

11. United States, Dept. of Health and Human Services, "Prevalence of Substance Use Among Racial & Ethnic Subgroups in the U.S., Highlights," The NHSDA Report, May 2003, SAMHSA, Office of Applied Studies, Online article, 26 Mar. 2005 <http://oas.samhsa.gov/NHSDA/Ethnic/ethn1006.htm#E10E2>

12. Health Canada, "FAS/FAE Technical Working Group," It Takes a Community: Framework for the First Nations and Inuit Fetal Alcohol Syndrome/Fetal Alcohol Effects Initiative. (Ottawa: Health Canada, 1997), 1

13. Statistics Canada, <http://www.statcan.ca/Daily/English?030709?d030709b.htm> in handout from "Moving Forward with FAS," Community seminar, sponsored by "Baby Biz," Lou Soppit Community Center, Rocky Mountain House, Alberta, 18 Mar. 2005.

14. United States, Dept. of Health and Human Services, "Prevalence of Substance Use Among Racial & Ethnic Subgroups in the U.S., Highlights," The NHSDA Report, May 2003, SAMHSA, Office of Applied Studies, Online article, 26 Mar. 2005 <http://oas.samhsa.gov/NHSDA/Ethnic/ethn1006.htm#E10E2>

15. United States, Dept. of Health and Human Services, "SAMHSA's Treatment Episode Data Set (TEDS)," The DASIS Report, May 2003, SAMHSA, Online article, 26 Mar. 2005 <http://oas.samhsa.gov >

16. United States, Dept. of Health and Human Services, "Substance Abuse Treatment Admissions Among American Indians and Alaska Natives: 2002," May 2003, SAMHSA, Online article, 26 Mar. 2005 <http://oas.samhsa.gov >

17. S.M. Manson, J.H. Shore, A.E. Baron, L. Ackerson, & G. Neligh, "Alcohol abuse and dependence among American Indians," in J.E. Helzer, and G.J. Canino, eds. Alcoholism in North America, Europe, and Asia. (New York: Oxford University Press, 1992. pp. 113-130), Online article, 26 Mar. 2005 <http://www.niaaa.nih.gov/publications/aa23.htm>

18. United States, Dept. of Health and Human Services, SAMHSA, " Risk & Protective Factors for Substance Use Among American Indian or Alaska Native Youths, Highlights," The NSDUH Report, Sept. 2004, SAMHSA, Office of Applied Studies, Online article, 22 Mar. 2005 <http://oas.samhsa.gov/2k4/AmIndianYouthRF/AmIndianYouthRF.cfm>

19. United States, Dept. of Health and Human Services, SAMHSA, " Risk & Protective Factors for Substance Use Among American Indian or Alaska Native Youths, Highlights," The NSDUH Report, Sept. 2004, SAMHSA, Office of Applied Studies, Online article, 22 Mar. 2005 <http://oas.samhsa.gov/parents.cfm >

20. United States, Dept. of Health and Human Services, SAMHSA, " Risk & Protective Factors for Substance Use Among American Indian or Alaska Native Youths, Highlights," The NSDUH Report, Sept. 2004, SAMHSA, Office of Applied Studies, Online article, 22 Mar. 2005 <http://oas.samhsa.gov/2k4/AmIndianYouthRF/AmIndianYouthRF.cfm>

21. Carol Kraft, RN, "Personal Observation," "Moving Forward with FAS," Community seminar, sponsored by "Baby Biz," Lou Soppit Community Center, Rocky Mountain House, Alberta, 18 Mar. 2005.

22. Ibid.

23. Streissguth, Barr, Kogan and Bookstein, "Understanding the Occurrence of Secondary Disabilities in Clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol effects (FAE)," Centers for Disease Control and Prevention, Grant No. R04/CCR0087515, (1996).

24.Ibid.

25. Ibid. Fast, Conry and Loock; Identifying fetal alcohol syndrome among youth in the criminal justice system; Journal of Developmental Behavioral Pediatrics, (1999)

26. Streissguth, Barr, Kogan and Bookstein, "Understanding the Occurrence of Secondary Disabilities in Clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol effects (FAE)," Centers for Disease Control and Prevention, Grant No. R04/CCR0087515, (1996)

FASD resources

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