Fetal Alcohol Spectrum Disorder & Learning Disabilities

This page is to support professionals assessing & supporting learning disabilities in children and adults with complex overlapping needs through the brain injury Fetal Alcohol Spectrum Disorder; we will describe further below the dysexecutive functioning from the frontal lobe damage which specifically indicates the complexity of the disability & needs.

This information is important if you are working in the Learning Difficulties Assessment Team (LDAT), a multidisciplinary professional who provides support and services to individuals with learning disabilities including typically:

Health Professionals: Doctors, nurses, psychologists, speech and language therapists, occupational therapists
Social Care Professionals: Social workers, support workers
Educational Professionals: Special education teachers, learning support assistants

FASD is the most severe of all neurodevelopmental disorders in terms of its trajectory over time, and its impact on adaptive behaviour and life chances.

FASD continues to be a frequently misunderstood condition, those who are not appropriately trained or knowledgeable can often make inaccurate assumptions due to the fact that many individuals with FASD can superficially present as more able than they actually are, due to their spiky cognitive and neurodevelopmental profiles.

With up to 428 co-occurring neurodevelopmental conditions common to FASD, spanning across 18 of 22 chapters of the International Classification of Diseases (ICD) -10. The most prevalent disease conditions include congenital malformations, deformities, and chromosomal abnormalities, mental and behavioural disorders.

Those with FASD are as vulnerable as those with global intellectual disability despite having broadly average IQ in many cases.

Professionals should be aware that those with FASD are functionally similar to those with global intellectual disability in terms of executive and adaptive behaviour; the dysexecutive profile in FASD is often more severe than in those with ID.

Dysexecutive functioning refers to higher-level cognitive processes, often stemming from frontal lobe damage. It encompasses a range of impairments in planning, organising, initiating, inhibiting, and flexibly adapting to new situations. This can manifest as challenges in various aspects of daily life, including emotional regulation, motivation, and behaviour which specifically indicated the complexity of this severe disability.

In order to consider and legislatively support FASD-related vulnerabilities, local authority services must not concern themselves solely on IQ, as this prejudices against those with FASD; a very common and misunderstood condition where the Learning Disabilities team are a vital resource to a huge population of children & young adults who desperately need support and scaffolding.

To be clear, there is always a disconnect between IQ and functioning in individuals with FASD – IQ does not predict adaptive behaviour in this population.

It has been discussed at the government’s APPG that people with FASD are often excluded by support teams due to a narrow interpretation of ‘learning disability’ which excludes those with an IQ over 70, regardless of what their ‘executive function’ and ‘adaptive behaviour’ challenges might be. This clearly precludes those with FASD from accessing support.

This discrimination was ruled unacceptable by the Local Government and Social Care Ombudsman in an important case where Michael King, Local Government and Social Care Ombudsman, said:

“I am concerned the council appears to be gatekeeping access to its services. By applying criteria to people requesting assessments for their children, it is placing barriers in front of them.” [1]

The council also failed to carry out its own assessment of the appropriate level of respite care needed & where the council were given very clear instruction to change this poor practice for other families.

The previous government invested more than £60 million in a new “Building the Right Support Action Plan” for people with learning disabilities and autism and £1.4 million for mandatory training for Autism and Learning Disabilities - but these did not include FASD. It is relevant to mention that FASD is roughly three times more common than Autism Spectrum Disorder.

Councils are now encouraged to use their training budgets to train an inclusive workforce to support the published NICE Quality Standards for FASD. Good practice is echoed by both Ofsted & CQC in promoting a skilled SEND workforce.

'The government recognises that Fetal Alcohol Spectrum Disorder can have a significant impact on the early years development of children and on their life chances. As a result, schools must use their best endeavours to make sure a child or young person gets the special educational provision they need, this includes monitoring the progress of pupils regularly and putting support in place where needed, including arranging diagnostic tests where appropriate.'

'Pupils at school with medical conditions should be properly supported so that they have full access to education.'

Catherine McKinnell Minister of State said in the Parliamentary debate19 February 2025

To be classed as ‘disabled’ under section 6 of the Equality Act 2010, you must have a physical or mental impairment that has a substantial and long term adverse effect on your ability to carry out normal day-to-day activities; 'those with FASD will often fit within this definition' or 'those with FASD may '

Authors: Furney & Jackson 2025

For more information regarding rights for carers & parents please find a helpful document HERE

To support families & professionals please find notes from one of our 'Ask the Expert' Events with Consultant Dr Clinical Psychologist Cassie Jackson: FASD Learning Difficulty or Learning Disability?

Important Note:

Local Authority teams who have not yet had their 'FASD-informed' training to obtain a better understanding of this acquired brain injury are invited to take part in specialist training to support this need through our:

'FASD Informed' for Professionals training course

'Section 181 of the Health and Care Act 2022 (the 2022 Act) introduces a requirement into the Health and Social Care Act 2008 (the 2008 Act) and regulation 18 of The Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 (the 2014 Regulations) that, from 1 July 2022, service providers registered with CQC must ensure their staff receive training appropriate to their role.

Please find our empowering range of resources to help families to be heard and to represent the needs and vulnerabilities of those they support with irreparable brain damage

[1] Ombudsman Report : https://www.lgo.org.uk/information-centre/news/2021/jul/disabled-boy-missed-out-on-education-and-support-because-of-poor-council-practice

SHOP RESOURCES

Anchor 1

Additional support for Professionals, Caregivers & Parents supporting those with Learning Disabilities

Under the Equality Act 2010, public sector organisations must make changes in their approach or provision to ensure that services are accessible to disabled people as well as everybody else.

This series of guidance below shares information, ideas and good practice in making reasonable adjustments for people with learning disabilities in specific health service areas. It is aimed at health and social care professionals and family members who provide support for, or plan services used by, people with learning disabilities. There is also an easy-read summary for each service area.

More on codes of practice and mandatory training....

Learning Disabilities and Autism are just 2 of the 328 co-occurring conditions of Fetal Alcohol Spectrum Disorder (FASD)

Important NEW Guidance

The Oliver McGowan code of practice on statutory learning disability and autism training

Published 19 June 2025

Policy change following the devastating death of Oliver McGowan, a young autistic teenager with a mild learning disability, who sadly died after having a severe reaction to medication which he and his family had asked for him not to receive.

"Oliver died because clinicians did not understand learning disability, autism and how this affects a person. They did not understand how to make reasonable adjustments for Oliver or read his hospital passport which would have told them exactly how to do this. Clinicians did not follow the relevant laws: the Human Rights Act 1998, the Autism Act 2009, the Equality Act 2010, the Mental Health Act 1983 and the Mental Capacity Act 2005.

They were 'misunderstanding' Oliver’s autism which resulted in diagnostic overshadowing. They were not familiar with STOMP (stopping over medication of people with a learning disability, autism or both with psychotropic medicines) or Ask Listen Do. These are all core ingredients that are at the heart of The Oliver McGowan Mandatory Training."

Oliver’s mother, Paula McGowan OBE

"We need to achieve to make our health service fit for the future, including the critical shifts from sickness to prevention and from hospitals to communities. Ensuring that health and care staff have the right knowledge and skills to provide compassionate, informed care for people with a learning disability and autistic people is an important part of these goals."

"Publication of a brand new code of practice as required by the Health and Care Act 2022 is a significant step towards improving the care and treatment of people with a learning disability and autistic people. The code provides the detail of how we expect registered health and care providers to meet the new requirement for training and lets people with a learning disability and autistic people and their families know what to expect from their service providers."

UK Government*

The code emphasises the importance of person-centred care which is crucial to identify and support a person’s needs sooner, ultimately improving outcomes and tackling health inequalities. This underpins FASD Informed good practice & fundamentally ensures that practitioners are FASD Responsive.

'Section 181 of the Health and Care Act 2022 (the 2022 Act) introduces a requirement into the Health and Social Care Act 2008 (the 2008 Act) and regulation 18 of The Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 (the 2014 Regulations) that, from 1 July 2022, service providers registered with CQC must ensure their staff receive training on learning disability and autism appropriate to their role. It applies to all registered providers of all health and adult social care in England. We will refer to the Health and Care Act 2022 (the 2022 Act) throughout the rest of the code.

This requirement builds on the existing staffing requirements set out in regulation 18 of the 2014 Regulations which require registered providers to ensure staff receive such appropriate support, training, professional development, supervision and appraisal as is necessary to enable them to carry out the duties they are employed to perform. CQC’s website sets out further details on regulation 18.

Because NHS trusts (as an entity), primary medical and dental care, independent healthcare, independent sector ambulance providers and adult social care providers are all required to register with CQC as providers of health or social care, they are referred to in this document as ‘registered providers’.

The 2014 Regulations describe the health and adult social care activities that may lawfully only be carried out by providers that are registered with CQC and set out the registration requirements that these providers must meet to become and stay registered. The 2008 Act and the 2014 Regulations are law and must be complied with. CQC has enforcement powers that they may use if registered providers do not comply with the law. More information about enforcement can be found in section 4, ‘How to use the code to meet the training requirement’.

Section 21A of the 2008 Act, as inserted by the 2022 Act, places a duty on the Secretary of State for Health and Social Care to issue a code of practice about compliance with the requirement for staff of registered providers to receive training on learning disability and autism. CQC will take into account the code and how registered providers are meeting and complying with the requirements of regulation.

If a registered provider has not followed the relevant guidance contained in the code then they will be expected to give good reasons to CQC on why they have departed from it and be able to demonstrate that it meets the requirement in a different way.

The Oliver McGowan draft code of practice on statutory learning disability and autism training 2025*

Learning Disabilities: What is FASD ? for Multi-Disciplinary Teams

Mental Capacity & Deprivation of Liberty

Mental Capacity Assessments