Advice for Families & Carers

Diary of a deaf mom and 10-year old with neurodevelopmental delay and sensory needs

Day 9 of #TheGreatBigLockdown #Coronavirus #FASD

Today was the third day in a row the 10-year old followed me constantly around the house. He wanted to know what I was doing even though he could see what I was doing. He wanted to know instantly if I shuffled my seating position on the sofa, where I was going.

If I left the room he followed asking me if I was going to the toilet, every single time.

I understand a decent amount why he’s acting super clingy and unsure, I understand in these strange unstructured times that his brain is losing sense of where he is in the present, that he’s regressing to repetitive actions hoping he’ll get an answer that makes sense to him, a lot of his questions don’t have an answer. He’s in a Catch 22 situation.

Because I understand this, I have adjusted my responses, my actions and my patience accordingly. I am his rock, his anchor, his trust that he will be ok.

But it is now day NINE……..

I shouted this morning.  

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FASD and Trauma – parenting tips for carers

Initiated and written by two Hertfordshire foster carers, Sue and Tony Sharp, this guide helps foster carers parenting at the intersection of FASD and trauma. A PDF is available here.

This is co-produced by NOFAS-UK and the East Hertfordshire and Area FASD Support Network.

What You Can Do About Coronavirus – a guide for those with FASD

People with FASD and their families can take some steps to help prepare for coronavirus. NOFAS-UK has prepared a summary of Public Health England’s “Coronavirus (COVID-19) – 5 things you can do to protect yourself and your community”. We have made it more accessible and included some bits specifically for those with FASD (or other neurodevelopmental conditions)

A PDF of this 6-page summary is available here. Pages 1 and 4 might be useful to print, especially for younger people.

There is a great video about hand washing by the Purple All Stars from Hertfordshire that you might want to share with your kids.

My Brain, Me and FASD

To mark the 2018 International FASD Awareness Day, NOFAS-UK is pleased to launch an innovative booklet designed to promote wellbeing among children with Foetal Alcohol Spectrum Disorders (FASD). It provides information in a fun and visual format, emphasising the strengths of those with FASD and highlighting strategies that can help.

My Brain, Me and FASD (PDF)

My Brain, Me and FASD was developed as a resource for our Brain Base: FASD Wellbeing Summer Fun Days. Building on the success of that programme, we hope to get this into the hands of as many children and young people with FASD as possible.

If you would like to order a hard copy, please send an email with your complete address to: The booklet is free. That said, if you are able, we would appreciate help in covering printing, shipping and handling costs (we are not making any money off the sale of this booklet): £2 in the UK and £5 for international requests. We can provide payment details when you contact us.


Support Strategies for FASD

 Cognitive Support Strategies for FASD (PDF)




Kids with FASD are Trying

“Kids with FASD are trying”. How you read that statement matters. Understanding the brain/behavior link in Fetal Alcohol Spectrum Disorders leads to better outcomes and happier families. We’re here to help, please contact us.

Download the poster.

kids with FASD are trying

After a Diagnosis

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

Download – After a Diagnosis (PDF)

Living with FASD


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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 brain-based issues at the core 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.

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.
  • Help your child understand their condition. See for example “My Brain, Me and FASD.”

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. They may have trouble staying in school, keeping jobs or sustaining healthy relationships.

While adults with FASD may have difficulty maintaining successful independence, with proper supports and interdependence they can lead successful and productive lives. There are many adults with FASD who are promoting change and raising awareness of FASD. See for example these FASD Role Models.

Children and adults develop anger against themselves out of frustration because they cannot access information in their own mind. They develop frustration 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: without diagnosis and appropriate support people with FASD may 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 higher 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. A referral to a community paediatrician can kickstart the process. Other assessments, especially a ‘neurocognitive’ or ‘neuropsychological’ assessment will be key.

Seeking advice and resources such as those found on this website emphasising the brain-based strategies to support those with FASD can change trajectories and create brighter futures.

My Brain, Me and FASD