The ninth day of the ninth month is international FASD Day to draw attention to abstaining from alcohol during the nine months of pregnancy. This year, the FASD UK Alliance groups have chosen to make September “FASD Awareness Month”.

Official changes are underway

Big changes are coming soon that are relevant for all who are concerned about alcohol harm.

Official entities across the UK are lining up policies to better inform pregnant women of the risks of alcohol in pregnancy, and to ensure diagnosis and support of those with Foetal Alcohol Spectrum Disorder (FASD).

This month the Department of Health and Social Care is expected to release its first FASD health needs assessment. Later this year NICE is expected to release its first Quality Standard on FASD.

These both come after:

  1. The groundbreaking 2019 Scottish SIGN 156 guideline on “Children and young people exposed prenatally to alcohol” (which has been accepted by NICE).
  2. Public Health England’s identification of reducing harm from alcohol in pregnancy as a maternity high impact area.
  3. And a brand new NICE antenatal guideline that clearly lays out the importance of alcohol-free pregnancies.

While NHS websites still need to catch up with these changes, they operationalise at long last the 2016 Chief Medical Officers’ guidance and reflect the policies the British Medical Association has been calling for since 2006.

Shattering old school thinking

Collectively these documents go a long way to shattering pervasive old-school thinking.

Most significantly, FASD (with or without facial features) is now the formal diagnosis, replacing the confusing alphabet soup of diagnoses in the prior system.

They also importantly firmly put to rest the lingering belief that the FASD spectrum is not real, by moving away from the belief that it is only those with certain facial features who are most severely affected. Fewer than 10% of people with FASD have sentinel facial features. According to SIGN 156, all with FASD have “pervasive and long-standing brain dysfunction, which is defined by severe impairment…in three or more…neurodevelopmental areas.”

Toward systemic change

Many in the FASD community hope these changes will lead not only to pregnant women being fully-informed about the risks of alcohol in pregnancy so that they can make truly informed choices, but also many are optimistic these will lead to systemic change in the way those with FASD are diagnosed and supported.

We saw the power of this new approach when the Local Government and Social Care Ombudsman criticised a local council for ‘gatekeeping’ services, by denying a young person with FASD access to services for those with ‘autism and learning disabilities’ and criticised them for delaying access to appropriate assessment and schooling.

It’s time to train up

Few people realise that alcohol-exposed pregnancies risk miscarriage, premature birth, stillbirth, and Sudden Infant Death Syndrome, in addition to FASD. They don’t know that FASD affects more people than autism. The UK’s first active-case ascertainment study found 1.8 – 3.6% of students have FASD. All who were identified in this study had not previously received a diagnosis.

When finalised, the NICE Quality Standard will set areas for improving the quality of care related to alcohol advice given to pregnant women and support for those with FASD. CCGs and NHS trusts must ‘have regard’ for NICE Quality Standards and will have to report their progress on measurable indicators.

The need for more training is woven throughout the Quality Standard. Yet we need to be sure the trainings are thorough and sensitive, since these issues must be carefully handled in a ‘no shame, no blame’ manner and guided by the latest science. National FASD and Seashell under our partnership funded by DHSC have created a new FASD: Preferred UK Language Guide and Best Practice in FASD Training Guide. Our new trainings weave the voices of those with lived experience throughout.

National FASD believes it is critical to empower people with FASD to become self-advocates. To help with this, we also developed with Seashell a groundbreaking new “Me and My FASD Toolkit” that has been called ‘world-class’.

Time to flip the narrative

As a parent to a teen with FASD, I have to say none of this will matter unless society at large recognises that people with FASD and their families are part of our communities. The sad truth is that we hear all the time that people with FASD are often undiagnosed or misdiagnosed. They think they are alone, naughty, unworthy of support that others with neurodevelopmental conditions can access. Their parents are blamed for this failure in public health systems.

If these new changes lead to new pathways and awareness that change these perceptions, then they truly will have helped to create brighter futures. We all have a role to play in flipping the narrative. The time is now.

Written by Sandra Butcher, Chief Executive of The National Organisation for FASD

All IAS Blogposts are published with the permission of the author. The views expressed are solely the author’s own and do not necessarily represent the views of the Institute of Alcohol Studies.