Fetal alcohol spectrum disorder (FASD) describes some children, youth and adults who were exposed to alcohol during pregnancy. It is the result of impacts to the brain and affects learning, behaviour, social-emotional development, and neurological development. FASD is not inherited and does not run in families.

FASD is often called a hidden disability because most people with FASD have no outward signs of the disorder. Some people who were exposed to alcohol during pregnancy have facial features that are typical of FASD, but many do not. All people with FASD have brain-based challenges. 

The effects can be mild to serious, depending on:

• the amount of alcohol used at one time
• how often the alcohol was consumed
• when during the pregnancy the alcohol was used

The effect of alcohol on the developing baby is influenced by:

• mother or birthing parent’s age
• mother or birthing parent’s health and nutrition
• stress
• smoking or other drug use
• genetics of the mother and baby

Experts agree that there is no safe level of drinking during pregnancy. Alcohol can affect a baby at any time during the pregnancy, and even before the mother or birthing parent knows they are pregnant. A baby can be exposed to alcohol in breast milk if the mother or birthing parent is drinking. Each child is affected differently depending on their genetics, and the environment they grow up in.

It is safest not to drink during pregnancy. If a mother or birthing parent was drinking alcohol before they knew they were pregnant, they should stop as soon as they finds out – every day without alcohol makes a difference. Partners, family, and friends can help by supporting the pregnant person and encouraging them not to drink alcohol, and by not drinking themselves. If there are concerns about health risks to the baby, it is best to see a health care provider.

It's also important to mention that while the other parent's drinking does not result in FASD, it has an important influence on the birthing parent's consumption and the healthy development of babies.

FASD is a life-long disability. People do not “outgrow” FASD, but there is good evidence that early and appropriate support can improve outcomes for children with FASD.

Alcohol affects how the brain is formed, grows and functions. We can sometimes see this in someone’s behaviour and development. This is different for each person.

The diagnosis of FASD is made, in part, by assessing the following:  

^{Source: Adapted with Permission from Healthy Child Manitoba. Please see full document for description of domains.}

Mental health and other disorders in people who have FASD

People with FASD have higher rates of mental health concerns than those who do not have FASD. It is important to screen and diagnose people for mental health and other disorders, as they should be treated.

The disorders frequently diagnosed are:

• Anxiety
• Depression
• Substance use disorders
• Attention deficit hyperactivity disorder (ADHD)
• Autism spectrum disorder
• Sleep disorders
• Psychosis
• Intellectual disability
• Learning disability

Parents, caregivers, and teachers may notice behaviours that might indicate FASD or other conditions.

Children may be at risk for having FASD if they:

• are impulsive
• are easily distracted
• do not learn from their experiences
• have problems keeping up with peers (at school or socially)
• have trouble understanding time and money
• have a sibling with FASD
• have parents with known or suspected alcohol challenges

Parents and caregivers can connect with their child’s school and teacher to discuss what their child’s teacher might be noticing.

To diagnosis FASD, a team of specialists will do a medical evaluation and a neurodevelopmental assessment. They look at how the brain is functioning. It is important to remember that the IQ of people with FASD can range from below to above average. Alcohol exposure during pregnancy is not the only cause of these neurological disorders. The child might have medical or genetic concerns, or have experienced trauma.

A diagnosis of FASD can be made only after a baby is born. See the ‘Where to From Here’ section for more information on getting an assessment and diagnosis.

Parenting any child is both challenging and rewarding. 

Every child with FASD has their own special set of strengths as well as their own challenges. Too often people focus on the child’s disability instead of appreciating the whole person. It is important that parents of a child with FASD learn about the disability, and get support for managing their child’s brain differences. One significant way to help is by providing a stable, nurturing environment.

As parents and caregivers, we expect children to learn and behave in certain ways based on their age. Children and youth with FASD are often at a younger age of development in a number of areas than others their age. If we can adjust our expectations and “think younger” for a child with FASD, it may help to reduce frustration on all sides and improve outcomes.

It is also important to remember that people with FASD may have had more harmful childhood experiences than those without FASD (such as being exposed to domestic violence or abuse).

One well known study found that the impact of having FASD can be reduced by:

• having a diagnosis before age 6
• being in a stable, nurturing home
• using special needs services  
• having basic needs met
• having no experience of violence against themselves

Building on strengths and tackling challenges

It is very helpful to identify the strengths and talents in children with FASD while working to improve the areas of difficulty. A good starting place is to use the information in the diagnostic assessment. If you focus on strengths, it will help others see and appreciate your child as a whole person, as well as improve your child’s self-esteem.

1. Start by identifying your child’s strengths, talents and potential interests.  Begin to include these in everyday tasks. Examples include: raking the lawn, shoveling snow, looking up directions on the computer.
2. Use words that are positive and strength-based when thinking about solutions or working with your child.
   • What does my child do well?
   • Saying “I believe in you.”
   • How can I support my child when they are struggling?
3. Help your child discover what they are able to do. Encourage your child to take part in everyday activities.
4. Think ahead to the challenges your child might face in an upcoming situation and plan ways to lessen these challenges (this is called anticipatory parenting).
5. Identify what some of your child’s specific challenges are, and work with your child as well as your care team to come up with solutions that work for your child.

Supports for people with FASD and their families/caregivers

An early diagnosis can help lessen the disabilities related to FASD. It is a lifelong condition, and people with FASD will need supports for their entire lives. The kind of support needed will change as the person ages.

Younger children with FASD may benefit from:

• mental health support
• speech and language therapy
• occupational therapy
• educational supports

As people with FASD grow older, their mental health concerns may become more serious if left untreated. They may also experience difficulty at school and in social settings. Some may run into problems with the law.

Youth and adults may benefit from:

• drug and alcohol counselling
• employment training
• a case manager and school counsellor
• support with daily activities of daily living:
  • cooking
  • hygiene
  • finances

Medication

There is no medication for treatment of FASD itself.  But some medications can help with some of the mental health challenges that are more common with FASD. It is important to have a discussion with your child’s doctor so you understand the possible risks and benefits of these medications.

Supporting Parents and Caregivers raising children with FASD

Parenting in general can be hard work. Parenting a child with FASD can be very demanding and exhausting. Parents and caregivers may feel frustrated, disappointed, and sad as they work to support their children as best they can. It is important to make sure you make time for yourself to refresh and reset so you can be fully present as a loving parent or caregiver.

Look after your own physical needs – get enough sleep, eat well, and exercise. Spend time with people who give you emotional support. Remember the interests you had before parenting a child with FASD and spend time enjoying them again (sports, music, art, etc.). Stay informed about FASD.  Join committees that work to raise awareness of FASD in schools and within social services. Look for support groups and connect with others who are on a similar journey.

A Note on Grief and Loss

It is normal for caregivers and family members to have feelings of grief, loss and guilt along their journey with FASD.

No parent sets out to cause harm to their children. People drink alcohol for various reasons and to different degrees. Often, mothers are not aware that they are pregnant until several weeks after conception and have, unknowingly, exposed their unborn child to alcohol. Once a mother knows she is pregnant, she should stop drinking alcohol as every day without alcohol makes a difference.

The feeling of loss for what “could have been” for the child can be overwhelming. Try to adjust your hopes to focus on your child’s strengths, and develop realistic goals. That can help you to shift from a negative to a more positive, productive path.  

It is important for you to recognize these feelings and seek support and help. Your own physical and emotional health is crucial to being the best parent possible for your child.

• Talk to your doctor about getting an assessment for your child. If FASD is suspected, your doctor may refer you to the Complex Developmental Behavioural Conditions (CDBC) network in your Health Region. They may also refer you to a pediatrician or psychiatrist to rule out other possible medical causes for the difficulties and behaviours that concern you.
   
• Get Support from a Key Worker.  In BC, there is a Key Worker and Parent Support Program that provides support for families of children under the age of 19 with FASD. Key Workers give emotional and practical support to families and help them find ways to adapt a child’s environment to focus on their strengths, and address difficulties. They also refer families to resources like training and support groups. Key Workers are located in each Health Region across BC.  Support from a key worker is free – families can contact one at any time, even before an assessment.  Find an FASD key worker or parent support in your community (PDF)

Looking for more information on this topic? Connect with a family peer support worker at the Kelty Centre to discover additional resources, learn more about support and treatment options, or just to find a listening ear.