Or at least it is for many adoptive parents. 

About a quarter of our children are diagnosed with or suspected to have FASD. That’s a headline from The Adoption Barometer 2019 , the biggest snapshot of adoption across the UK. Given the dearth of information for adopters and the general lack of access to medical expertise or support, the real number is almost certainly much higher – according to a recent study. With estimates that about 80 per cent of children in care are affected by FASD, a comfortable majority of adopted children are at risk of the effects of exposure to alcohol in the womb. 

This is only slightly tempered by the massive upward revision of FASD rates in the general population. A recent UK-based study highlighted that up to 17 percent of children screened had symptoms consistent with FASD.

This is the biggest cause of preventable brain damage in the UK. It causes learning difficulties, physical challenges and emotional problems. It increases the risk of social isolation, mental illness, and dangerous behaviour. It’s irreversible. It’s lifelong. Without early diagnosis, intervention and support during childhood, there is a higher possibility of poor life outcomes. 

So, while I do sometimes roll my eyes ever so slightly at global awareness days, when it comes to FASD I’m happy to go out there with a megaphone. 

FASD Hub Scotland  

Scotland is leading the field in the UK, as the first nation to establish an FASD diagnostic pathway. This spring, the Scottish Government backed Adoption UK in Scotland to launch FASD Hub Scotland, supporting all parents and carers of people who were, or may have been, exposed to alcohol during pregnancy. The service includes a helpline, online support communities, training and information, as well as training and resources for professionals. As far as we know, this is the only bespoke support service for families with FASD in the UK. 

It’s early days, but in the first three months of FASD Hub Scotland being launched on 18 June, the dedicated FASD advisors have responded to 58 enquires. This is the equivalent of 85 percent of all calls relating to FASD received by the Adoption UK Scotland helpline from April 2018 to March 2019.  

Calls received were from adoptive parents or prospective adopters (40 percent), from foster or kinship carers (10 percent) and birth parents (10 percent).  The remaining calls were from professionals, including teachers, social workers and support workers.   

Since the hub was launched the online peer support community has reached almost 150 members. This demonstrates, without a shadow of a doubt, the great need for a specialist FASD support service for all parents and carers.    

A new NICE quality standard 

In May 2019, NOFAS published a report showing that only one in five Clinical Commissioning Groups in England provide for FASD to be diagnosed in children, and only one in ten provide for adults. Broadly speaking, this means that most adoptive families have no recourse to medical help if they suspect their child has FASD. This is the case even if the parents have been told that alcohol was a factor in their child’s history.

No clinical provision means no diagnosis, no clarity, no management strategy and no access to the array of support a child with FASD and their family need from school to adulthood. No statistics are available - but a similar situation is likely to prevail in both Northern Ireland and Wales.

The good news is that NICE has begun the process of developing a quality standard for FASD in England. I hope it will be developed quickly, learning from the Scottish model. I hope too that it will unlock diagnosis and management resources for NHS trusts who are currently wholly underequipped to meet the needs of families affected by FASD. And I hope that as awareness grows this becomes a universal provision across the UK. 

 

National FASD strategies 

In September 2018, following the success of our FASD Conference in May 2018, Adoption UK called for national FASD strategies across the UK, covering prevention, diagnosis and support.  

Alongside a focus on prevention, including the belated but welcome change in medical advice that no alcohol is safe in pregnancy, we need recognition that some cohorts, including adopted children, are at higher risk and urgently require a focus on early diagnosis and management.

Every day, a parent rings our helpline concerned that their child has FASD, experiencing incomprehensible meltdowns, inhumane sleep deprivation and the failure of recommended parenting strategies.

We can bet that every day, a young person with undiagnosed FASD gets excluded from school for being unable to comply with behaviour policies, loses their job for failing to manage their time or tasks, or is led into danger by that fatal FASD combination of social immaturity and impulsiveness. From county lines to unemployment, FASD is a personal, social and economic bombshell. 

Much less frequently, a parent or carer gets the clarity and parenting strategies they need to nurture the wellbeing, safety and self-esteem of a family member with FASD. Or a person with FASD gets the insight and support they need to cope with their condition, manage its effects and build on their strengths.

As with all disabilities, FASD does not have to be a bar to wellbeing and success, as long as understanding and support are there. Early diagnosis and intervention are also essential.  

So, on FASD awareness day, I want to say that we need to massively increase awareness of FASD. But that’s not all. We need effective diagnosis and management too. 

Links to resources on FASD

NoFAS-UK website

FASD Network website

FASD Hub Scotland

NHS Ayreshire & Arran Fetal Alcohol Advisory & Support Team website

Making sense of FASD 

FASD information for care givers

FASD Network booklet for young adults with FASD

Community Living booklet on supporting adults with FASD

ACAMH podcast on FASD with Dr Jennifer Shields & Dr Sarah Brown

 

Twitter accounts to follow:

@FASDHubScotland    

@FASDAdvisoryAAA  

@NOFASUK  

@Drymester   

@CanFASD    

@NOFASDAustralia 

@oursacredbreath