Seeking support for children and young people with FASD in the UK

It's a challenge to navigate a diagnosis of FASD in the NHS – a condition that remains poorly understood. It is a challenge for professionals who work in the system, and even more complex for families and individuals themselves.

While it is difficult things have improved dramatically over the last 20 years. When I (Raja Mukherjee) first became involved with FASD in 2002 there were no services, very little recognition by both professionals and the general public and even in areas where it has been shown to be relatively common, little understanding existed. 

At that point in time, drinking during pregnancy was deemed safe at low levels and very little FASD research had been conducted in the UK. People who were interested tended to be individuals working in clinical practise but rarely published their findings.

Over the last decade, if not the last three years, there have been real movements. Not only has the system started to define approaches that could become established as accessible pathways for all, but sets of standards have also been defined that professionals will have to adhere to. 

Things have changed

These, when combined with good practise approaches have been developed to demonstrate, that no longer is the diagnosis of FASD always a negative one. In fact, with early recognition and appropriate support, building on the growing evidence base both around diagnosis but more importantly intervention, the future for individuals is no longer negative. With the right support, the trajectory can become quality lives for both the individual and their families.

The National FASD Clinic

I started the National FASD Clinic in 2009, based on my special interest and research and was later joined by Alex Carlisle. Initially as a psychologist supporting my evaluation of others, then later taking over the more day-to-day running of the clinic, together we have moved the service forward. As we are supported by other members of staff, the clinic has grown, become more established and recognised as a centre of excellence for FASD in the UK.

At the National FASD Clinic we have had the enormous privilege of working with hundreds of people with FASD and their carers. Everyone with FASD is unique and there is unlikely to be one right way of supporting someone with the condition. Presented below are a few ideas that are drawn from research, clinical experience, and people reporting what they find helpful.

1. Develop a trusted relationship using tools from the Dyadic Developmental Psychotherapy PACE approach: 

• Playfulness: special time/play every day, follow person’s lead and have fun, playful stance
• Acceptance: accept the inner life of the person, celebrate uniqueness and effort
• Curiosity: genuine i.e. without imposing an agenda, wonder aloud
• Empathy: actively show that the inner life of person is important

2. Model desired behaviour:

• Growth mindset: we can all learn from mistakes 
• Self-care: such as rest, hydration
• Emotional regulation: such as pausing before responding to stimuli

3. Support for potential underlying brain differences (e.g. inattention, impulse control, hyperactivity, understanding and language, problem solving, time sequencing, memory, sensory sensitivities etc.):   

• Remove potential triggers by using simple specific language, repetition, routine, external prompts and supervision, visual cues, time to process, short tasks, movement breaks, quiet space
• Reward new learning and desirable responses with immediate valued consequences; rewards need to be tailored. Do not expect learning to occur quickly or be retained.

4. Reduce likelihood of undesirable responses that are affecting the person’s quality of life:

• Neutral outcomes for less desirable, but tolerable, responses (do not ignore the person)
• Non-punitive clear boundaries for intolerable risky responses. Calm consistent simple messages, using non-violent communication methods.

Some of the above principles are explained further in the videos ‘8 magic keys’,‘6 things educators and staff should know about FASD’ and 'developing a growth mindset'.

Key advice

Often people with FASD appear to have understood much more than they have been able to process in that moment. The effort of trying to process can result in people feeling overwhelmed and fatigued. 

If we had to choose one piece of advice it would be to consider simplifying information (for example through visual cues, 1-2 step tasks and routine). Simplifying is not a new or complicated concept to understand, but nevertheless it is a real skill to consistently communicate in simple terms. 

Many carers of people with FASD we meet have become highly developed in this skill and it is a true inspiration. 

Accessing help and resources

If you think someone you care for may have FASD, you can connect with other experienced carers of people with FASD and watch how they change their communication to provide external scaffolding and/or structure. 

You can get more information about connecting with other carers through charities such as National FASD and FASD UK Alliance – United Together for Social Change.