BDA Autism Position Statement

Introduction

The British Dietetic Association’s (BDA) Autism Specialist Sub-Group aims to promote excellence in nutrition and dietetic practice in supporting health and wellbeing in autistic children, young people and adults.

At least 1% of us are autistic (1). Autistic people experience stigma, health inequalities and poorer life outcomes (2). Autistic people die up to 15 years earlier than non-autistic people, are twice as likely to die from any nutrition-related cause, and are nine times more likely to die by suicide (3).

These issues are preventable. We all have a responsibility for redressing the balance.

This position statement was written by Zoe Connor, Paediatric Dietitian and Resource Officer of the BDA Autism Specialist Sub-Group and reviewed by all members of the committee. It sets out guidance for improving dietetic practice focused on inclusion and anti-discrimination of autistic people in line with the BDA Code of Professional Conduct (4), Health and Care Professions Council professional standards (5), and various UK governmental guidance (2) including the Autism Act (England) 2009, the Autism (Amendment) Act (Northern Ireland) 2022 (6), the Learning/intellectual disability and autism: transformation plan (Scottish Government) 2021 (7), and the Code of Practice on the delivery of autism services (Welsh Government) 2021 (8).

This statement is primarily aimed at the nutrition and dietetic workforce (comprising of student nutritionists and dietitians, apprentices, support workers, assistants, nutritionists and dietitians). It may also be of interest to other health and care professionals, commissioners and the wider public to highlight the need for dietitians to be involved in the provision and planning of all services that support autistic people.

Recommendations for the nutrition and dietetic workforce

1. Be neurodivergence-affirming. This involves:

a) Examining your own knowledge, skills and biases related to supporting autistic individuals and seek out training and supervision to fill any knowledge and skill gaps.

b) Adjusting services to maximise accessibility to autistic people—this is best done by consulting with their autistic service users.

c) Ensuring that communications are accessible, inclusive, and respectful of autistic people–this includes social media posts, media articles, diet sheets, information videos etc.

2. Actively tackle discrimination towards autistic people from colleagues, services, and institutions.

Background

Autism

1-3% of us are autistic, many suspect the true figure is much higher (1). Autism encompasses the diagnosis ‘autistic spectrum disorder’ (9,10) and similar diagnoses that previously fell under the autistic spectrum umbrella e.g. Aspergers syndrome.

Autism is defined by autistic scholar Dr Nick Walker as:

a genetically-based human neurological variant. … Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals…. Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.” (11)

Neurodiversity and neurodivergence

Neurodiversity is “the diversity of human minds, the infinite variation in neurocognitive functioning within our species”, we are all therefore neurodiverse (12). Neurodivergence is however a term that encompasses the 15-20% of people whose neurotype differs from those who are neurotypical (i.e. the prevailing norm) (13). Neurodivergence includes autism and a variety of other conditions such as but not limited to attention deficit hyperactivity disorder (ADHD),epilepsy, bipolar, depression, anxiety, downs syndrome, acquired brain injury (ABI), developmental trauma, dementia, dyslexia, intellectual disability (also known as a learning disability).

Many autistic people are multiply neurodivergent: up to 70% also have ADHD (14), up to 50% have anxiety disorders, and up to 45% have post-traumatic stress disorder (PTSD) (15). Up to 30% of autistic people also have an intellectual disability. 20% of autistic people speak few or no words (but may communicate in other ways) (15).

Health inequalities

Improving the health and wellbeing of autistic children and young people (CYP) and adults is a priority worldwide (16). Autistic people have an increased risk of many preventable nutritionrelated conditions including vitamin and mineral deficiencies, dyslipidaemia, hypertension and type 2 diabetes; and die up to 15 years younger than the general population (3,17–19).

Barriers to accessing care

access to prompt and appropriate health care contributes to the inequalities experienced by autistic people. 74% of autistic adults experience difficulties in accessing health care, and 88% feel that health professionals fail to understand their health needs (20). 24% of autistic people and their families are unable to access feeding, nutrition and dietary help via the NHS and of those who do, 77% don’t find it useful (21). Autistic adults identify various difficulties in accessing care: being unsure if symptoms warrant help, difficulty making appointments by telephone, not feeling understood, difficulty communicating and uncomfortable waiting room environments (22).

Suicide

Preventing suicide in autism is a public health priority. Autistic adults are nine times more likely to die from suicide than non-autistic adults. Autistic children are 28 times more likely to think about or attempt suicide (23). Late-diagnosed autistic women are a high-risk group. Red flags for suicide risk are different in autistic people and disclosure of suicidal thoughts should always be taken seriously even if the person doesn’t seem otherwise depressed. The following have been preliminarily identified as useful to suicide prevention: promoting feelings of belonging, connectedness, and self-worth. Risks are feeling socially disconnected and feeling like a burden (24).

Intersectionality

Intersectionality refers to the additional, and often multiplied, disadvantage that people with multiple marginalised identities face (25,26).

Gender and sexuality

At least three times more boys than girls receive autism diagnoses. This ratio is decreasing as recognition of differing gender presentations grows (27). Autistic people are more likely to be trans or non-binary/agender/gender fluid than non-autistic people, and more likely to be gay or bisexual or otherwise non-heterosexual (28). Trans autistic people are more likely to be depressed or anxious than cis autistic people (29).

Race/ethnicity

Levels of autism are consistent across different ethnic groups however rates of diagnosis differ across groups in the UK—reflecting barriers to recognition and access to diagnosis. Early diagnosis and support are more often missed in children whose families don’t speak English as a first language. Children from Asian families and Traveller/Roma families have lower rates of diagnosis. Families of children from Black and minority ethnicities report difficulty accessing diagnosis and support. Experiences of Black and minority ethnic group autistic adults are poorly researched (30).

Diet, nutrition and eating behaviours

Standard government healthy eating advice and nutritional requirements apply to autistic people. However, many autistic people have eating differences that can be barriers to eating a varied diet. Many dietary and diet-related problems are more common in autistic people than in non-autistic people, including:

Feeding problems in young children (five times more common than in non-autistic children) (31)

• Feeding and eating disorders such as anorexia nervosa and avoidant restrictive food intake disorder (ARFID). Up to half of ARFID patients may be autistic (32) and up to a third of those with anorexia nervosa (33,34).
• Gastrointestinal problems (four times more common) (35)
• Diabetes (type 2 only)
• Hyperlipidaemia in adulthood (twice as common) (37)
• Food allergy or intolerance (twice as common) (38)

Around four in five autistic children and young people have eating differences—most commonly limited food preferences, hypersensitivity to food textures, accepting only one brand of a preferred food, pocketing food without swallowing, and pica (32).

Autistic people are at higher risk of nutrient deficiencies. Numerous cases of limited diets leading to scurvy and severe nutrient deficiencies, blindness and near death have been published (39,40). The judiciary report into the death of autistic seven-year-old Alfie Nicholls in 2021 in Manchester highlighted that he died of undiagnosed ARFID and related malnutrition (41).

Eating differences leading to imbalanced diets are likely to contribute to the increased prevalence of dietary problems alongside the physical toll that stress, anxiety, and trauma can take on the body. Eating differences are typically driven by sensory perception differences (42,43), executive functioning differences and cognitive rigidity (44).

Neurodivergence-affirming practice

Being neurodivergence affirming (or neurodiversity affirming, ND affirming or neuro affirming) involves seeing neurodivergence through a ‘strength-based’ lens, as a brain difference, rather than something that needs ‘fixing’. It is aligned with the social model of disability, i.e. that a disability results from societal barriers, rather than a person's impairment or difference.

Neurodivergence-affirming practice promotes the self-esteem and agency of autistic or otherwise-neurodivergent people (45–50). Being neurodivergence affirming is key to making services more inclusive and reducing health inequalities. For example, neurodivergenceaffirming care might involve:

• Avoiding ableism (discrimination in favour of non-disabled people i.e. non-autistic people).
• Avoiding approaches that are harmful to autistic people.
• Being trauma-informed.
• Creating inclusive services for all.
• Accommodating a variety of communication styles and modes.
• Embracing and validating difference (including eating differences where they don’t cause harm).
• Encouraging unmasking (i.e. being themselves), stimming (various self-stimulation activities like rocking, fidgeting), not insisting on eye contact or indeed face-to-face contact.
• Exploring the unique strengths and needs of each autistic individual.
• Indicators (e.g., in emails, websites, name badges) that you are neurodivergenceaffirming.
• Listening to and amplifying the voices of autistic people as experts by lived experience. 
• Reasonable adjustments.
• Understanding differing sensory needs to ensure sensory safety.
• Use of preferred language.

Neurodivergence-affirming dietetic support in clinical practice involves accommodating eating differences wherever possible whilst also avoiding diagnostic overshadowing i.e. dismissing feeding problems as ‘just autism’. Effective management of eating problems in autistic people is likely to need interdisciplinary individualised multi-modal support for underlying psychological, social and medical issues, as well as for executive functioning, oro-motor and sensory processing differences.

Reasonable adjustments

Autistic people are entitled to reasonable adjustments under the Equality Act 2010 (England, Wales, Scotland) and the Disability Discrimination Act 1995 (Northern Ireland) i.e. services should take steps to ensure autistic people can use the same services as non-autistic people (51). Best practice is to design services flexibly and offer everybody adjustments autistic service users might need e.g., providing a list of possible adjustments to choose from in advance. Caregivers and family members of autistic people, or non-autistic service users may also be autistic and need their own accommodations. Examples are: 

• Clear, unambiguous information.
• Clear information about what a meeting will involve in advance.
• Flexibility in timing, location, and length of meetings (as a rule allow at least double time and double the number of episodes for autistic people).
• Flexibility in mode of meetings e.g. video or phone calls, emails, texts, face-to-face, home visits.
• Supporting verbal information with written/visual information.
• Awareness of changes to the environment to meet sensory needs e.g. a quiet waiting room, dimmed lighting, frequent breaks.

Preferred language

Language matters, studies have linked use of person-first language to increased self-harm in autistic people (52). Preferred language of the majority of autistic people is in the table below (53,54). 

Summary

This position statement supports guidance from across the four nations that aims to improve the lives of autistic people and sets out mandatory training in autism for health professionals and other public service providers (6–8,55).

The nutrition and dietetic workforce have an important role in supporting the health and wellbeing of autistic people through evidence-based and neurodivergence-affirming support for eating and drinking difficulties, as well as in training others that support autistic people. All workers must ensure they are adequately trained to best support autistic people, address poor satisfaction with existing care, and raise concerns when needs are not met.

The nutrition and dietetic workforce should be proactive in promoting neurodivergenceaffirming, trauma-informed, inclusive and equitable care and services for all, whether that is within policy, research, management or front-line health.

Useful links

• BDA Autism Specialist Sub-Group

Training frameworks (setting out what health professionals should know)

• Core capabilities frameworks for supporting autistic people and/or people with a learning disability (relevant to those working in any sector and all staff working across health and social care)
• National autism training framework Wales
• NHS Education for Scotland autism training framework

 Reasonable adjustments 

• NHS guidance on accessible digital content
• Beyond reasonable adjustment: autistic-friendly spaces and Universal Design
• Dos and don’ts for digital accessibility

Training 

• NHS England autism training directory
• NHS Education for Scotland autism resources (free for all)
• Oliver McGowan mandatory training on autism and learning disabilities (e-learning component free for all)

References

34. Adamson J, Brede J, Babb C, Serpell L, Jones CRG, Fox J, et al. Towards identifying a method of screening for autism amongst women with restrictive eating disorders. Eur Eat Disord Rev J Eat Disord Assoc. 2022;30(5):592–603.
35. Westwood H, Tchanturia K. Autism Spectrum Disorder in Anorexia Nervosa: An Updated Literature Review. Curr Psychiatry Rep. 2017;19(7):41.
36. Holingue C, Newill C, Lee LC, Pasricha P, Fallin MD. Gastrointestinal Symptoms in Autism Spectrum Disorder: A Review of the Literature on Ascertainment and Prevalence. Autism Res Off J Int Soc Autism Res. 2018 Jan;11(1):24–36.
37. Cortese S, Gabellone A, Marzulli L, Iturmendi-Sabater I, de La Chica-Duarte D, Piqué IM, et al. Association between autism spectrum disorder and diabetes: systematic review and meta-analysis. Neurosci Biobehav Rev. 2022 May 1;136:104592.
38. Tyler CV, Schramm SC, Karafa M, Tang AS, Jain AK. Chronic Disease Risks in Young Adults With Autism Spectrum Disorder: Forewarned Is Forearmed. Am J Intellect Dev Disabil. 2011 Sep 1;116(5):371–80.
39. Al-Beltagi M. Autism medical comorbidities. World J Clin Pediatr. 2021 May 9;10(3):15–28.
40. Swed-Tobia R, Haj A, Militianu D, Eshach O, Ravid S, Weiss R, et al. Highly Selective Eating in Autism Spectrum Disorder Leading to Scurvy: A Series of Three Patients. Pediatr Neurol. 2019 May;94:61–3.
41. Yule S, Wanik J, Holm EM, Bruder MB, Shanley E, Sherman CQ, et al. Nutritional Deficiency Disease Secondary to ARFID Symptoms Associated with Autism and the Broad Autism Phenotype: A Qualitative Systematic Review of Case Reports and Case Series. J Acad Nutr Diet. 2021 Mar 1;121(3):467–92.
42. Mutch, A. Alfie Nicholls: Prevention of future deaths report [Internet]. Manchester South: Courts and Tribunals Judiciary; 2024 Feb [cited 2024 May 21]. Report No.: 2024– 0084. Available from: https://www.judiciary.uk/prevention-of-future-death-reports/alfie- nicholls-prevention-of-future-deaths-report/
43. Nimbley E, Golds L, Sharpe H, Gillespie-Smith K, Duffy F. Sensory processing and eating behaviours in autism: A systematic review. Eur Eat Disord Rev. 2022;30(5):538– 59.
44. Dovey TM, Kumari V, Blissett J. Eating behaviour, behavioural problems and sensory profiles of children with avoidant/restrictive food intake disorder (ARFID), autistic spectrum disorders or picky eating: Same or different? Eur Psychiatry. 2019 Sep 1;61:56– 62.
45. Kinnaird E, Norton C, Pimblett C, Stewart C, Tchanturia K. Eating as an autistic adult: An exploratory qualitative study. PLoS ONE [Internet]. 2019 Aug 1 [cited 2020 Nov 12];14(8). Available from: https://pubmed.ncbi.nlm.nih.gov/31465510/
46. RDs for Neurodiversity [Internet]. Neurodiversity Affirming Model. [cited 2023 Oct 12]. Available from: https://www.rdsforneurodiversity.com/neurodiversity-affirming-model
47. Roberts J. Therapist Neurodiversity Collective. 2022 Neurodiversity-Affirming Therapy: Positions, Therapy Goals, and Best Practices. [cited 2023 Oct 13]. Available from: https://therapistndc.org/neurodiversity-affirming-therapy/
48. AutisticSLT [Internet]. Neurodivergent-Affirming SLT Assessment & Intervention. [cited 2023 Oct 13].  Available from: https://www.autisticslt.com/nd-affirmingslt
49. Lerner MD, Gurba AN, Gassner DL. A framework for neurodiversity-affirming interventions for autistic individuals. J Consult Clin Psychol. 2023;91(9):503–4.
50. Eating disorders neurodiversity Australia (EDNA). Dietitians [Internet]. EDNA Eating disorders Neurodiversity Australia; 2024 [cited 2024 May 30]. Available from: https://www.edneuroaus.com/informationsheets
51. Eating disorders neurodiversity Australia (EDNA). General Considerations for All Health and Allied Health Professionals [Internet]. EDNA Eating disorders Neurodiversity Australia; 2024 [cited 2024 May 30]. Available from: https://www.edneuroaus.com/informationsheets
52. National Autistic Society [Internet] Asking for reasonable adjustments. [cited 2023 Oct 12].  Available from: https://www.autism.org.uk/advice-and- guidance/topics/mental-health/seeking-help/asking-for-reasonable-adjustments
53. Shaw SCK, Fossi A, Carravallah LA, Rabenstein K, Ross W, Doherty M. The experiences of autistic doctors: a cross-sectional study. Front Psychiatry. 2023 Jul 18;14:1160994.
54. CAPTAP (Community Against Prejudice Towards Autistic People)). How to talk about autistic ways of being [Internet]. 2023 [cited 2024 Jul 19]. Available from: https://captapnetwork.wordpress.com/2023/09/19/how-to-talk/
55. National Autistic Society. How to talk about autism [Internet]. [cited 2021 Mar 19]. Available from: https://www.autism.org.uk/what-we-do/help-and-support/how-to-talk- about-autism
56. England Government. Health and Care Act 2022 [Internet]. King’s Printer of Acts of Parliament; Available from: https://www.legislation.gov.uk/ukpga/2022/31/section/181/enacted

This document has been prepared by the committee of the BDA Autism Specialist Sub-Group, some of whom are autistic. We recognise that language preferences are evolving. We welcome feedback on this document: [email protected]. The statement is due to be reviewed by March 2027