Advice for Families & Carers

After a Diagnosis

Information for parents/carers following a diagnosis of FASD by Dr. Cassie Jackson (née Hunt), Highly Specialist Clinical Psychologist, Psychology Service, Suffolk Community Healthcare.

Living with FASD

FASD-SNS

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Although Foetal Alcohol Spectrum Disorder (FASD) is a lifelong condition, there are many ways families and carers can adapt to the behaviour of a child or an adult with FASD and give them positive support. By understanding the background of the condition, families and carers will be better equipped to deal with everyday situations and behaviours of a child/adult with FASD.

Families and carers of a person with Foetal Alcohol Spectrum Disorder (FASD) can provide support to help build and develop the following skills:

  • time management
  • budgeting and organisation
  • shopping and cooking
  • personal hygiene
  • social relationships
  • housing

People with FASD can have difficulty making friends and it is important to build a safe social life.

Arrange activities with support that are non-competitive in safe settings with people who understand those with learning disabilities such as in day centres, supervised gatherings for people of all ages, older children to help with younger children, and clubs such as ice skating, gymnastics and music.

If it is affordable arrange private lessons or coaching for mentoring companionship. If they don’t have friends, some clubs will provide group companionship.

People with FASD cannot rely on their memory to consistently repeat their actions, so rather than emphasise a particular activity try to build on what they enjoy and the benefit of having a favourite activity such as skating, drawing, riding, playing computer games and gardening. Doing what they enjoy will give people positive topics for discussion and sharing.

Build on the positives

  • Help people find things to do that they enjoy which will increase the chances of them doing things well.
  • Try to use more positive language, for example instead of saying ‘Don’t do that”, try ‘Let’s do this instead’.
  • Give your child positive opportunities to ask for help from you and others – get them into the habit of getting support from others.

Build a support network 

Educate and share routines and information about your child with everyone who works with your child. Meet with and share information with teachers, friends, social workers, therapists, doctors, neighbours, etc.

Build a network of people the child or adult can turn to such as siblings, teachers, neighbours and friends.

It is important to arrange respite and build in ‘time-out’ for carers to recharge their batteries.

The parent, carer, advocate should remember these tips:

  • Adjust your expectations: know your child and be realistic.
  • Adapt life to suit your child – they may adapt in time.
  • Be willing to repeat yourself and to be patient.
  • Be consistent – make rules and stick to them.
  • It can take longer for children with FASD to learn as their short-term memory is affected.

Characteristics of Foetal Alcohol Spectrum Disorder can vary at different ages.

  • Infants may have a low birth weight, be irritable, appear floppy, be sensitive to light, noise and touch or have a high-pitched cry.
  • Toddlers may exhibit poor memory, hyperactivity, lack of fear, no sense of boundaries and a need for excessive physical contact.
  • During the primary school years children may be easily distracted with short attention spans, exhibit poor coordination and difficulty with motor skills. They may require a lot of one-to-one attention.
  • Older children may have low self-esteem because they think they are different or because they have trouble keeping up with their peers in school.
  • Teenagers may have poor impulse control, be unable to distinguish between public and private behaviours and must be reminded of concepts on a daily basis.

Most children with FASD have developmental delays. For example, teenagers with FASD may exhibit the typical social behaviour of a 7-9 year old. Consequently, a number of people with FASD can become isolated because they do not sustain friendships with peers.

Children and adults with FASD can be vulnerable to physical, sexual and emotional abuse.

Adults with FASD have difficulty maintaining successful independence. They have trouble staying in school, keeping jobs or sustaining healthy relationships. Less than 10% of adults with FASD live independently due to impairments in life and social skills, despite having low average or average intellectual abilities.

Children and adults develop anger against themselves out of frustration because they cannot access information in their own mind. They develop anger toward the world because they are continually criticised for behaviour they may not be able to control.

Why is it important for the family to get a proper diagnosis?

Early diagnosis is essential for both the child and the family because it allows for early intervention. It provides the opportunity for appropriate treatment and support.

Without appropriate support services people with FASD have a high risk of developing mental illness, getting into trouble with the law, having unwanted pregnancies and abusing alcohol and other drugs.

Unfortunately, it is common for children to be misdiagnosed. A correct diagnosis can help give parents an explanation for their child’s behaviour. It helps the families and others supporting the individual to understand they are dealing with a person with some level of brain damage, not a badly behaved child (or a victim of poor parenting).

It is important for the family and the individual to get a diagnosis because research has shown that without a diagnosis the secondary outcomes are very poor: 90% of patients with FASD will develop mental health problems, get into trouble with the law, have sexual difficulties or go on to have their own alcohol and drug problems. If FASD goes unrecognised at an early stage, there is a high risk of these adverse life outcomes.

What support or strategies can help a family cope?

The first step is to get a referral for a formal diagnosis. The GP can support the family through this process.