In March 2005, the first Canadian guidelines for diagnosing fetal alcohol spectrum disorder (FASD) were published in the Canadian Medical Association Journal. FASD is one of the most serious health and social concerns in Canada.

Challenges

Many issues are associated with diagnosing and managing FASD. The ones that follow are among the most common.

Lack of trained teams – Too few teams of health care providers are trained to diagnose FASD. To add to this difficulty, there are not enough training teams to teach new teams.
Lack of funding for assessments – Not all teams are government funded. A single assessment may cost between $5,000 and $15,000. This may sound like a lot of money. However, the cost of FASD to the individual and to society is almost always lessened when proper diagnosis is made early in life.
Cultural barriers – This barrier may be one of the most significant issues. A team must respond to cultural differences and different social structures. Otherwise, they will fail in making a complete diagnosis. Sharing information is essential to diagnosing accurately. Diagnosis without this sharing will not carry much weight. It will also be difficult to get help from appropriate services and programs.
Diagnosing young infants – Babies are difficult to diagnose, as they are not fully developed in many areas. As well, they are not able to fully cooperate for some tests.
Diagnosing adults – Features of the face can change for various reasons. Brain structure and function can also change due to injury, stroke, metabolic conditions, and drug and alcohol use.
Time and travel issues – Waiting for an assessment often takes a long time. Travel, sometimes to another province, may be necessary. As well, some teams must travel to the patients.
Issues with medical records – It is often very difficult to obtain prenatal medical records to confirm exposure to alcohol before birth. This is especially true if a parent has died or no one is available to give information about the pregnancy.
Legal issues – Many of those in remand centres and correctional institutions are affected by FASD. Often, they end up in the legal system because FASD affects behaviour and the ability to make decisions and judgments. It is not uncommon for a team to do assessments in correctional facilities.
Mental health issues – As the frontal lobes of the brain are affected by alcohol before birth, people with FASD often have mental health problems. It can be very difficult to access psychiatric services, which are limited in number. Mental health issues create specific and unique challenges, especially when the affected person becomes involved in the legal system.
Coming of age – Support programs and financial and other government services change when the person turns 18 years of age. It is essential to plan ahead of time. Medical and other information must be transferred to appropriate places within the government. Most people reaching this age are expected to take charge and become responsible for themselves. However, those with FASD often lack this ability.

Why diagnose FASD?

Detecting FASD early allows access to special programs and other resources. This can prevent secondary disabilities, including unemployment, mental health problems, trouble with the law, and inappropriate sexual behaviour. Perhaps a less disrupted school experience is the most important benefit.

The mother may also have the opportunity for counselling and treatment which may prevent FASD in any future children she may bear.

A team of health care professionals is needed to diagnose FASD. This team includes a doctor specially trained for this purpose, a neuropsychologist, an occupational therapist, a speech language pathologist, and mental health therapists. Other health care providers and cultural interpreters may also be part of the team.

Diagnosis of FASD in a person involves establishing the following:

a history of alcohol exposure before birth
the way alcohol has affected growth
the way alcohol has affected facial features
the way alcohol has affected the brain - probably the most important factor.

Unfortunately, only a few of those affected by FASD are now diagnosed, as the number of FASD experts is limited.

Getting a diagnosis

How does assessment for FASD come about? Usually, a doctor or other health care provider, a social worker or family member makes a referral to the assessment team.

First, a contact person gathers information about the child and the pregnancy. Detailed information is supplied to the team. The team must have an accurate confirmation of alcohol exposure before birth.

For the best possible outcome, the child, their family and the community supports must all be in place and ready to participate. All must agree with the assessment and be aware of possible emotional responses to a FASD diagnosis. These include guilt, anger and feeling criticized by society.

Full assessment by the team can take a day or more. It gives information about the child’s unique needs and strengths. As well, a plan can be tailored to help with specific challenges. A report containing all of the gathered information and recommendations for care and treatment usually follows. It is made available to the person with FASD or their family, caregivers and doctors.

The FASD diagnosis process includes recommendations to help the child, the family and the community.

Assessing FASD is an important step. It allows diagnosis, which helps the child, the mother, the family and the community. The purpose is not to label the person, but to develop a plan to deal with the condition. A blueprint is developed on early intervention, treatment, and how best to proceed. The earlier this is done, the better the outcome for everyone concerned.

Fetal alcohol spectrum disorder Early diagnosis makes all the difference

Children whose mothers drink during pregnancy can develop problems that range from birth defects to brain damage and developmental problems.

Challenges

Why diagnose FASD?

Getting a diagnosis

Fetal alcohol spectrum disorder
Early diagnosis makes all the difference