Many people have questions about fetal alcohol spectrum disorder and here are some Frequently Asked Questions (FAQs) or common questions and answers about FASD.
What is Fetal Alcohol Spectrum Disorder (FASD)?
FASD is a diagnostic term used to describe the range of effects that can occur when alcohol is used in pregnancy. When alcohol is used in pregnancy, the brain and central nervous system can be permanently damaged. The brain and central nervous system develop throughout pregnancy and the damage that occurs may be different for each person depending on when alcohol is used in pregnancy. FASD is a lifelong disorder that can create different challenges for each person. Here are some examples of challenges can occur in the following areas:
- Physical – birth defects and motor skills
- Mental – cognitive, memory, decision making
- Behavioural – trouble getting along in the world, angry outbursts
- Learning – poor school performance, trouble with abstract thinking
People diagnosed with FASD may share some common characteristics, yet each person has their own unique strengths and challenges. Getting an early diagnosis and the right supports helps people with FASD.
The Canadian Diagnostic Guidelines for FASD were revised in 2016. There are now two categories of diagnoses available in Canada:
- FASD with Sentinel Facial Features
- FASD without Sentinel Facial Features
The sentinel facial features are three features on the face that indicate a child has been exposed to alcohol in pregnancy:
- Short palpebral fissures (shortened opening between the eyelids)
- Smooth philtrum (smooth groove in the middle of the upper lip)
- Thin upper lip
Most people with FASD do not have the sentinel facial features because they were not exposed to alcohol during the short time (3 days) in pregnancy when their face was forming. However, the sentinel facial features are very predictive of alcohol use in pregnancy. As people get older, the facial features usually become less noticeable.
Having the facial features present is NOT related to the severity of brain damage. If a person does not have all three sentinel facial features, the diagnostic team must confirm that alcohol was used in pregnancy in order to make a diagnosis of FASD (Cook et al., 2016). FASD is known as an invisible disability because you can’t tell if someone has FASD just by looking at them.
People diagnosed before 2016 may have received a diagnosis of: Fetal Alcohol Syndrome (FAS), Partial Fetal Alcohol Syndrome (pFAS), Alcohol Related Neurodevelopmental Disorder (ARND), Fetal Alcohol Effects (FAE) or Alcohol-Related Birth Defects (ARBD).
What are common characteristics of FASD?
People with FASD have a range of abilities and impairments. Each person has their own abilities and some strengths can include being well-spoken, artistic, musical, athletic, friendly, generous, determined and good with young children. Below are common challenges that have been observed in people diagnosed with FASD. These are called primary disabilities, conditions that someone is born with due to prenatal damage to the body and brain.
- Memory problems – trouble storing and retrieving information. Often, they fill in the parts of a story they do not remember with made up information leading many people to believe they are lying
- Inconsistent performance – understands something one day but not the next day, leading people to believe that the child is being difficult on purpose
- Impulsive, distractible, disorganized – does and says things without thinking, has trouble finding things or planning and finishing a task
- Difficulty following directions – can repeat instructions, but cannot put them into action
- Literal thinkers – does not understand jokes or cannot use information learned in one situation in another situation
- Struggles with abstract concepts such as math, money management, consequences, and time
- Cognitive processing problems – may think more slowly and only understand every third word of a normally paced conversation
- Developmental delay – may act younger than their chronological age
- Poor judgement – inability to predict outcomes or understand consequences
- Delayed motor skills – may have trouble with fine motor skills or with activities that require coordination
- Poor social skills – problems making and keeping friends, cannot read body language, does not understand personal boundaries (FASD Waterloo Region, 2018; Malbin, 2017)
If a person with FASD does not receive a diagnosis and appropriate support from people and services that understand their disorder they may develop challenges such as:
- Inability to control their frustration which may result in angry outbursts with/without violence
- Mental health concerns and substance use issues
- Difficulty with activities of daily living
- Disrupted school experiences
- Trouble with the law
- Difficulty holding a job
- Problems with alcohol and other drugs (Government of Canada, 2018)
When diagnosed early and provided with the supports they need, individuals with FASD are resilient and offer many strengths (Centers for Disease Control and Prevention, 2017).
Is there a cure for FASD?
There is no cure for FASD. The brain and body were damaged when they were developing. Research on FASD prevention, diagnosis, interventions and effective supports is expanding rapidly. There are many effective programs and supports that help to improve outcomes for people with FASD. With appropriate supports and services, people living with FASD can lead fulfilling happy lives. Examples of appropriate supports include special education, vocational programs, tutors, structured environments, and lifelong support. Often these supports aren’t available or are they very expensive to pay for privately. As research on FASD and brain development continue, more will be discovered that can improve the outcomes for those living with FASD.
FASD only affects people from certain ethnic, social and cultural backgrounds.
FASD affects all communities in Ontario and Canada. In 2015, 76.7% of Ontario women 15 years of age and older drank alcohol. In Canada, it is estimated that 50% of pregnancies are unplanned. Considering these statistics, it is clear that many babies will be exposed to alcohol in pregnancy regardless of level of education, age, ethnicity, or cultural background (Ialomiteanu et al., 2016; CanFASD, 2018).
People with FASD have recognizable facial features.
Very few people with FASD (14%) have recognizable facial features (Popova et al., 2018). The facial features (short palpebral fissures, thin upper lip and a smooth philtrum) occur if the fetus is exposed to alcohol between days 18-21. There is no connection between having FASD facial features and the amount of damage to the brain and body
. This is why FASD is called an invisible disability.
People with FASD have a low IQ.
Although many people with FASD have an IQ within the “normal” or even “high” range, many are not able to function as expected for their age. In other words, they may have average IQ, but below average adaptive function. IQ is often used to determine if a person is eligible for services and support. As a result, many people with FASD struggle to find the supports they need (University of Alberta, 2018).
As children get older they will grow out of FASD.
FASD is a lifelong, whole-body, physical disorder. However, early diagnosis, the right, consistent support and a stable living environment can improve outcomes for people living with FASD.
The behaviour problems seen in FASD are related to poor parenting.
The behaviours seen in people with FASD are related to the damage done when alcohol is used in pregnancy. People with FASD may have problems managing the challenges and frustrations of living with the disorder. A lack of understanding and the right kind of supports can also create many behaviour problems for people living with FASD. Parents of a child with FASD are often judged as poor parents when people do not understand the cause of a child’s behaviour.
People with FASD “do not try hard” and “lie when they think they are in trouble”.
It is common for people with FASD to be able to do something one day and not the next. Some people with FASD to make up a story if they have forgotten something or if they do not understand why something happened (cause and effect). This is due to the brain damage caused from the fetal alcohol exposure and not because they are doing this on purpose.
FASD is not very common.
The most recent research in Ontario indicates that about 2-3% of children 7-9 years of age have FASD. This is higher than the 1% that experts used to expect. Many of these children are not diagnosed due to a lack of understanding and awareness about FASD, a lack of diagnostic services and a reluctance for people to acknowledge alcohol use in pregnancy (Popova et al., 2018).
What do we know about alcohol and pregnancy?
Despite years of research, there is no safe level of alcohol consumption at any time in pregnancy. That’s why no alcohol consumption is recommended during pregnancy. If you are using alcohol, use reliable birth control to prevent an alcohol-exposed pregnancy. If you are trying to get pregnant or think you might be pregnant, stop using alcohol immediately (Canadian Centre on Substance Use and Addiction, 2018).
If you are having trouble stopping alcohol use in pregnancy, try to decrease your alcohol use and reach out to services or someone that can help you find the assistance that you need.
How can we reduce FASD?
Many studies have been done on how we can reduce the incidence of FASD. The answer is not as simple as just telling women not to drink in pregnancy. It has been found that we need to use many strategies to lower rates of FASD:
- Awareness-raising activities about the dangers of drinking in pregnancy
- Routine, brief conversations with women and men of childbearing age about their alcohol use and the need to use reliable birth control if alcohol is being used
- Non-judgemental supports for pregnant women that can help them stop or reduce their use of alcohol in pregnancy
- Non- judgemental supports for women after their baby is born to help them maintain safer levels of alcohol consumption and seek out child assessment if needed
- Supportive alcohol policies and actions that will reduce the amount of alcohol consumption overall in our communities (CanFASD, 2013)
Will using alcohol when you are breastfeeding cause FASD?
Using alcohol if you are breastfeeding does not cause FASD. It is caused only by alcohol exposure during pregnancy. If you drink alcohol before or during breastfeeding, alcohol does pass into the breastmilk and to the baby. If you plan on drinking alcohol occasionally and you are breastfeeding, wait until your baby is at least 3 months old, when their body systems are more developed. Planning ahead can make drinking alcohol and breastfeeding safer for your baby (Best Start Resource Centre, 2016).
What are the early signs of FASD? How do you know if your child has FASD?
If you have concerns about your child, it is important to discuss them with your health or social service provider especially if you know or suspect that there was alcohol exposure during pregnancy. See the common signs of FASD at different ages. An early diagnosis can improve the outcome of people with FASD especially if it comes with appropriate supports and services.
A diagnosis of FASD is not simple. Assessment or diagnosis of FASD is made by a multidisciplinary team of specialists that may consist of: physician, pediatrician, psychologist, speech and language pathologist, child development specialist, social worker and an occupational therapist. This team will make the diagnosis. Search the FASD Services Directory to find the right diagnostic service closest to you or to connect with your local FASD Worker/Coordinator.
What is a diagnosis? Why does it matter?
Making a diagnosis of FASD requires a multidisciplinary team and involves a complex physical and neurodevelopmental assessment. The 2016 Canadian Diagnostic Guidelines for FASD provide the basis for a FASD diagnosis (Cook et al., 2016).
Benefits of a diagnosis:
- Identifies strengths and weaknesses – will help a person with FASD get help in difficult areas and excel in areas that are strengths
- Provide support for additional services and/or government benefits
- May provide answers for older children and adults about why life has been difficult for them
- With more appropriate supports it may reduce the occurrence of additional challenges
- Help parents to understand the best ways to help their child succeed
- Provide important information about supports for youth transitioning to adulthood, such as guardianship, trusteeship and legal representation agreements (CanFASD, 2013)
How do I arrange for a diagnosis?
Getting a diagnosis of FASD is not easy. Services are limited, some are funded and some you have to pay for yourself. Many diagnostic services in Ontario have waiting lists or only serve people from a certain area. To find diagnostic services near you, visit FASD Services Directory to search for Diagnostic Services or to contact your local FASD Worker/Coordinator for help.
What’s the most important thing I can do for my child with FASD?
Even though there is no cure for FASD, there are things you can do help your child reach their full potential:
- Give your child continual encouragement. Nurture their strengths and abilities.
- Nurture their strengths and abilities.
- Get an early diagnosis (before 6 years of age)
- Ensure your child has special education/support services that understand FASD as early as possible (exceptionality designation, and Individual Education Plan which includes the required supports, accommodations, tools, learning and safety plans etc.)
- Learn as much as you can about FASD, how to parent and provide support to improve outcomes your child
- Provide a loving, nurturing and stable home environment
- Create an environment free of violence. Teach your child how to express anger and frustration in other ways
- Make sure you let your child know you love them just as they are and you will be there for them if they need it (Centers for Disease Control and Prevention, 2018)
When should I tell my child they have FASD?
The best time to tell a child they have FASD will be different for each child. A good time could be when your child starts asking questions about why things are different for them or when they notice they are different than other children. Begin as soon as you see your child questioning their challenges, so they do not develop a negative self-image. Talk to your child as long as they are interested and then talk about other subjects.
Things to keep in mind when discussing FASD with your child:
- Keep the conversation light and simple. Remember your child’s developmental age can be half their chronological age
- Use language that is easy for your child to understand
- Explain that FASD is caused by prenatal exposure to alcohol
- If you are not the biological parent: Reinforce that your child’s biological mother did not know she was pregnant, was unaware of the risks or was not well at the time. Avoid shame and blame so your child does not think their biological mother intentionally harmed them
- If you are the biological parent: Remember that you didn’t intend to harm your child. Depending on your situation, explain “I did not know I was pregnant” or “I didn’t know about the risks of alcohol during pregnancy” or “I was not well at the time”. Tell your child you love them and will never intentionally hurt them
- Explain that their brain works a bit differently. Highlight that your child has many strengths too and that FASD is just one part of them. Use storybooks, pictures, and other visuals to help you explain FASD
- You may need to repeat the discussion many time and give more information as your child gets older
- Explain FASD to your child’s siblings and possibly their friends. Explaining FASD to other children can help them accept your child and understand why they sometimes act differently
- Reinforce that FASD is not their fault
- Discuss how having other people who can guide them and care about them can help people living with FASD have a better life and make better decisions. This may help them listen to caregivers as they get older (FASD Waterloo Region, 2013a)
My child is experiencing challenging behaviours. How do I help them?
Children with FASD can repeat things well but they often have difficulty understanding what is being said and expressing how they are feeling. Challenging behaviour can be your child telling you that something is wrong, but they do not have the ability to express what is wrong at that point in time.
Suggestions to help:
- Identify how your child is feeling by providing simple labels for your child’s feelings
- Create a picture chart using photos of your child’s face with labels to help them identify their feelings and emotions
- Use a safe place: give your child a place to calm down, express anger or frustration where he is not penalized for acting out
- Find out what is behind the behaviour. Wait patiently with your child until they are able to talk about it
- Match your communication level to your child’s. If your child uses two-word phrases, use no more than two or three-word phrases when talking to them
- Use visual cues, speak softly and slowly, with short sentences. Pause 20 seconds between sentences to allow your child time to understand what is being said
- Use repetition and be consistent. Use the same words for the same instruction every time it is given, this helps to place the instruction into your child’s long-term memory
- Use simple rules and be specific. Do not use abstract words. Children with FASD have difficulty with abstract concepts
- Redirect your child rather than correcting or discipline
- Reward good behaviour immediately
- Focus on your child’s strengths
- Change the environment, not your child. Change the environment so challenging behaviour is less likely to occur. Remember your child has brain damage and they are not acting out on purpose to upset you (FASD Waterloo Region, 2013b)
How can I help my child with FASD in school?
FASD is beginning to be more recognized and accommodated in schools. However, this recognition is new, and some schools may be more aware than others about FASD. When working with the school, present yourself as a resource who will make things better for the child and easier for the teacher. Encourage the school to consult with you to plan ahead to avoid issues and if challenges arise. (FASD Waterloo Region, 2013c)
- Introduce yourself to the school, administrative team, and any new teachers before your child begins school or a new school year
- Ask for a transition planning meeting to discuss your child’s unique strengths and challenges and what has worked to accommodate them in the past and what supports may be accessed at the school
- Help teachers to understand that the goal with your child is interdependence (independence may not be a reasonable goal for your child) and to carefully monitor the level of support they need
- Ensure your child has an Individual Education Plan (IEP) which documents the required individual supports, accommodations, modifications, learning methods, and education goals. Review the IEP regularly and work collaboratively with the school team when changes to the IEP are necessary. Your child does not need a diagnosis or IPRC to have an IEP.
- Ensure your child with an FASD diagnosis has an Individual Placement Review Committee (IPRC) meeting; if not, ask for one. This process determines “exceptionality” and “placement” with the Ministry of Education. The IPRC process is outlined on the Ministry of Education website
- When your child begins a new year or starts at a new school ensure you have a transition plan
- Make yourself familiar with all the education supports in your geographic area to determine what might assist your child to have success at school (FASD ONE, 2014).
- Search for more school/education information in the Information about FASD directory on this website
My child is having a problem with the law. Where do I go for help?
People with FASD are over-represented and vulnerable in both youth and adult justice settings. According to the John Howard Society of Ontario (2010), youth with FASD are 19 times more likely to be jailed than youth without FASD and 60% of people with FASD over 12 years old have been charged with, or convicted of, a crime.
Depending on where they are on the spectrum, some people living with FASD may lack impulse control, have poor judgment, and poor memory. They may need help to stay safe and avoid getting into trouble. Their difficulties may cause them to engage in risky activities, be easily convinced to do things that are illegal, take the blame for others, and/or be the victim of criminal acts. Your child may need you to act as their support person to help them make good decisions and understand consequences of their actions.
If your child is involved with the police and the law for criminal behaviour, try to stay calm and seek support and guidance. If there is a local FASD support group in your area, ask for support and information from them. In most cases, the child will not understand what happened or why they are in trouble. Remaining calm and supportive will be extremely helpful to your child.
It may be helpful to create a booklet about FASD specific to your child’s unique needs to use with police, lawyers, judges, and correctional staff. This is critical to ensure appropriate treatment at all levels. You may also be able to request alternative measures to be used instead of legal charges, such as: supervised restitution, letters of apology to those harmed and stolen items being returned.
What can I do to prevent my child having problems with the law?
Prevention is extremely important:
- Talk to your child early about safety, ownership, right and wrong. Repeat these conversations often
- Minimize negative influences: get to know your child’s friends and their parents and supervise interactions when you can. Help your child find good mentor, role models and friends that do not use drugs or alcohol or engage in risky behaviour
- Advocate on behalf of your child: you know your child best, so don’t be afraid to speak up about appropriate charges, sentencing, and restorative justice
- Have your child carry an ID information card informing people that they have FASD and they may admit or say things that are not correct (FASD Waterloo Region, 2013d)