Can you help?

We are preparing a presentation for professionals, and we really want to include the views of children and young people with FASD. 

Your child or young person can take part in several ways - either by answering some simple questions or by completing one of our worksheets. We may also be looking for volunteers to record themselves reading (or signing) their responses. 

To take part, choose from the options below - you can choose more than one. There is a worksheet with speech bubbles and space to answer the questions, and also a blank worksheet for your child to write or draw anything about themselves they would like to share. Or you can use our questionnaire as a guide to ask your child their views. 

If your child completes a worksheet, please scan or take a photograph and email it to [email protected]  

Closing date is 24th April. 

Questionnaire

Speech Bubble Worksheet

Drawing worksheet

Jo reports from the CKS Event in Florida

Jeff Noble, a renowned FASD (Fetal Alcohol Spectrum Disorder) expert trainer, hosted the first-ever CKS live event in Florida in May 2023. The event was exclusively for the parents and caregivers who have received training from Jeff Noble on FASD via his Caregiver Kickstart Programme. The event aimed to bring together individuals who are instrumental in the care and support of those affected by FASD. During the event, attendees had the opportunity to share their experiences and learn from other caregivers and professionals working in the field. Jeff Noble led interactive sessions with a number of guests.  

Jeff Noble spoke to Dr. Jaquie Pei, a professor in the Department for Educational Psychology and Assistant Clinical Professor in the Department of Paediatreics at the University of Alberta, a practising registered Psychologist for the past twenty years. Dr Pei currently leads the intervention Network Action Team for the Canada FASD Research Network a role that facilitates the link between research policy and practise. Dr Pei joined Jeff onstage to explore the latest research and to discuss strategies for working with individuals with FASD / PAE  and the development of the THO (Towards Healthy Outcomes) programme being developed by CanFASD for parents and caregivers post diagnosis providing a solid foundation of knowledge and practical tools to apply to aid success.

The event provided attendees with a platform to connect with others, expand their knowledge, and learn practical strategies to improve the quality of life for individuals with FASD. The first-ever FASD CKS live was a huge success, and it is expected to be followed by similar events in the future.

 And can we talk about the highlight of the conference? The sense of community that was created was magic! Parents and caregivers who often feel isolated in their struggles with FASD finally found their tribe. Attendees left feeling uplifted and empowered to better advocate for their children and provide them with the support they deserve.

Truly inspiring were the contributions of the coaches, Barb Clark, Michael Harris, Megan Tucker , Christina Bofenkamp, and Laurie Anderson. Each coach brought their unique perspectives, experiences, and expertise to the table, and left a lasting impression on the attendees. They shared valuable insights and practical tips on how to improve personal and professional growth, highlighting the importance of self-awareness, goal setting, and continuous learning. The coaches created a positive environment that encouraged interaction and engagement, which made the conference a true success. Their hard work and dedication to their craft shone through the entire event both professionally and during all the social time, when there was huge fun, powerful conversations and enormous laughs! They left a lasting impact on all who attended.

As an adoptive parent of a 12-year-old with Fetal Alcohol Spectrum Disorder , I was honoured to be asked to take part in the event and spoke to Jeff Noble onstage live about the importance of advocating on a large scale. I emphasized the need for education and awareness surrounding FASD, as many people, including healthcare professionals, are not familiar with FASD. I also talked about the organization Voice In A Million, which aims to bring attention to children in adoptive & foster care and those who have FASD. Highlighting the power of children’s voices in spreading awareness and advocated for giving them a platform to share their stories. I stressed the importance of advocating not just for one child, but for all those with FASD and in foster/ adpotive care, as it can lead to systemic change and improved outcomes for all.

As an advisor on Fetal Alcohol Spectrum Disorder (FASD) for the FASD hub Scotland, I chose to go all the way to Florida to attend the CKS live event with my tribe, and the experience was so rewarding. I received a massive amount of support, encouragement, and guidance from all who attended, which made the trip worth it. So many like-minded individuals who share my passion for helping people with FASD were there in the room with me, and we forged friendships that will last for a lifetime. The overall experience was a humbling one, as the support and warmth I received from the fellow attendees helped me realize that the field of FASD needs more people who care and are willing to lend a hand. Overall, it was an incredible experience, and I left Florida with a renewed sense of purpose and a determination to continue making an impact in the FASD community.

Our May Newsletter is available now

May Newsletter

Our April Newsletter is available now

April Newsletter

FASD In The UK: Building on 20 Years Of Progress                                       

On 30th March Barbara (our FASD Project Lead) and Jo (FASD Advisor) travelled to Salford University for the "FASD in the UK: Building on 20 Years of Progress" conference. 

It was a great event and also an opportunity to meet up with people from FASD organisation from across the UK, many of whom we have only ever met virtually. 

Speakers included Prof Raja Mukherjee, Dr Patricia Jackson, Dr Jennifer Shields, plus researchers David Gilbert and Miranda Eodanable. The conference also marked the launch of the UK FASD Manifesto which set out how people with FASD feel they should be treated. 

Click here to read Barbara's blog post

Our March Newsletter is available now

March Newsletter 

Women, Alcohol, Pregnancy and FASD report

FASD Hub Scotland welcomes Professor Moira Plant’s newly published report entitled ‘Women, Alcohol, Pregnancy and FASD: What is known and what Scotland can do next’. The report has been published as part of the Healthier Pregnancies, Better Lives project at the Queens Nursing Institute Scotland.  

As the report reveals, FASD is a condition that is vastly underdiagnosed, leading to a lack of understanding of the condition and making it difficult for individuals and families affected by FASD to access the right support.  

This report highlights the issue of stigma and how this may lead to prenatal alcohol histories being omitted from a child’s medical files, which can become a barrier to later diagnosis. A lack of recorded prenatal alcohol history is an issue we hear about from many of the adoptive, fostering and kinship families we work with, and we would encourage those working on the frontline to consider how this could be routinely and accurately recorded in a non-stigmatising way for both pregnant women and baby.  

FASD Hub Scotland recognises that FASD is not 100% preventable due to unplanned pregnancies, however through greater education, nurturing relationships and sensitive conversations the prevalence of FASD can be significantly reduced.   We support the report and the recommendation that the Queens Nursing Institute Scotland facilitate continuing professional development to increase awareness and encourage implementation of effective strategies for preventing, identifying and supporting individuals/families affected by FASD. As members of the Healthier Pregnancies Better Lives Coalition, FASD Hub Scotland will offer support to achieve this.  

We agree with Prof Moira Plant’s recommendations for Scotland within the report, and particularly highlight: 

• Preconception and FASD training of mental health and addiction workers must become standard 
• Situating of services for people with FASD within general neurodevelopmental clinics alongside upskilling of staff in identifying more babies, older children, young people and adults with FASD 
• Develop mutually beneficial relationships with responsible mass and social media to encourage the accurate portrayal of people with FASD 
• Secure longer-term funding for FASD prevention, diagnostic and post-diagnostic services, supports and research 

FASD Hub Scotland commit to continue to work with our partner organisations in ensuring the lived experiences of people with FASD and their families are uppermost in the planning and delivery of FASD services.  

*NEW*

FASD Hub Scotland/Adoption UK Parents Carers Experience Survey

FASD is the most common neurodevelopmental condition in the western world (Clarke & Gibbard, 2003) yet time and time again we hear that accessing a diagnosis is problematic for people with a prenatal alcohol history and their families.  

During FASD Month in September 2021, FASD Hub Scotland and Adoption UK invited parents and carers from across the UK to share their experiences of seeking an FASD diagnosis. The survey was co-designed by the FASD Hub and an advisory group of professionals with experience of FASD diagnosis and support. Survey respondents included adoptive families, foster and kinship carers, biological parents and one individual with FASD who shared their experiences with us of their own diagnostic process.  

The survey asked about experiences such as information about prenatal alcohol exposure history shared, the process of assessment and diagnosis, barriers to this, and families’ access to support and showed us a clear picture of the difficulties families face to access the information and assessments necessary for a life changing diagnosis. 

Findings showed that over 80% experienced barriers to diagnosis – including 70% whose diagnosis depended on a report confirming prenatal alcohol exposure for their child, something that many families struggle to access within their children’s records depending on their early experiences. In addition, 84% felt they had not been given any information to help them as parents/carers through the assessment process, while two thirds felt more informed than professionals about FASD.  

The results highlight many unnecessary barriers to diagnosis still exist, particularly impacting the care experienced community where access to evidence of prenatal alcohol exposure relies on records held by professionals.  It was also clear from the results that geographical location and local resources varied the ability to access diagnosis, with 59% of parents/carers not seeking a diagnosis due to acknowledged difficulties in their area.  

At the time of the survey, Scotland was working towards implementing the SIGN 156 Guidelines, and England/Wales were still awaiting the publication of the NICE Quality Standards which provide guidance for medical practitioners around the diagnostic process – but these findings highlight the prevailing need to inform and educate professionals about FASD and address the practical issues faced by families who are seeking diagnosis for their child.  

In terms of support, 68% of respondents are part of an FASD online community, such as the FASD Hub Scotland supportive online group, but there is a distinct lack of support across the UK for families parenting children with FASD. As part of FASD month 2022 Adoption UK called for access to support hubs across all four nations in the UK, along with integrated support plans for families, recognising the need for support alongside the understanding and impact a diagnosis can offer families and individuals.  

These results evidence the challenges families face and demonstrate a need for improved diagnostic processes and post-diagnostic support – the least that families and individuals deserve to access in order to promote the best possible outcomes for our FASD communities.   

We would like to thank those involved in designing the survey, the Institute of Public Care at Oxford Brookes University who produced the report and above all, those parents, carers and individuals who took time to share their experiences with us. 

Read the Executive Summary

Read the Full Survey Analysis

On Tuesday 6th December we were delighted to be joined by Kevin Stewart MSP, Minister for Mental Wellbeing and Social Care and representatives of the Scottish Government for a FASD Ministerial Round table.

Mr Stewart had accepted an invitation to meet with parents and carers in response to an invitation issued to all UK governments as part of FASD Month 2022. 

Mr Stewart listened to parent and carers from our FASD Community and also to an adult who has an FASD diagnosis. 

“I am pleased to have FASD added to my portfolio of work as it’s so important. I look forward to hearing all your experiences. The government is determined to ensure people with FASD can follow their dreams and live life to fullest on their own terms” (Kevin Stewart, MSP)

The group shared with the minister their views on a range of issues including awareness of FASD, stigma, FASD as a lifelong condition and the need for lived experience to be at the centre of policy and decision making.

"As you know, FASD is lifelong and affects all areas of life. I want to ensure our FASD policy is joined up with policy areas across government – to ensure people can access support in all areas in life.” (Kevin Stewart, MSP)

Mr Stewart shared with the group his hope for trauma informed practice and person centred support. 

“We are trying to wrap the support around someone regardless of diagnosis” (Kevin Stewart, MSP)

Key messages included:

• FASD is a lifelong condition and ongoing support throughout the lifespan is essential so that individuals can achieve their hopes and dreams.
• More support is needed for families and individuals affected by FASD. There is so much more that needs to be done. The support from the FASD Hub has been very valuable for many families.
• Resourcing ongoing specialist support such as that which the Hub delivers is crucial, and the group emphasised how important Scottish Government's commitment to this provision is

“It’s a lifelong journey – that’s the most important bit – it doesn’t end at 18. We hear people every day expressing how grateful they are. We are so grateful from the Scottish Government support and thank you for coming. In an ideal world – all schools should be places for them to learn and thrive. But it's not the case just now.” (parent)

Further information on the discussion can be found in the document below. 

FASD Ministerial Round Table 06.12.22

We would like to thank Mr Stewart and all those who attended.