Author: Dr Odet M. Aszkenasy

  • Nutritional Issues in Autistic Children: A Practical Guide for Parents and Paediatricians

    Nutritional challenges represent a significant but often underappreciated aspect of supporting autistic children. While parents and clinicians typically focus on behavioural and developmental concerns, feeding difficulties and nutritional deficiencies can substantially impact a child’s health, energy levels and quality of life.

    Prevalence of Nutritional Issues

    Research consistently demonstrates that autistic children experience nutritional problems at higher rates than their neurotypical peers. A recent meta-analysis found that autistic children consume significantly lower amounts of protein, calcium, vitamin A, vitamin D, vitamin K, folate, riboflavin, thiamine, and niacin compared to typically developing children.

    Studies comparing autistic children to their typically developing siblings provide a useful comparison by controlling for family dietary patterns and socioeconomic factors. One approach to quantifying overall nutritional inadequacy uses a cumulative deficiency score: for each nutrient consumed below the recommended daily intake, researchers calculate the percentage shortfall, then add these together across all nutrients. Using this method, one study found that autistic children had cumulative deficits totalling 342.5% compared to 275.9% in typically developing childrenโ€”meaning the sum of all their individual nutrient shortfalls was significantly higher. This doesn’t mean any single child is deficient in “342% of nutrients” (which would be impossible), but rather that when you add up small and large deficits across multiple nutrients (calcium, vitamin D, iron, folate, etc.), the total shortfall is substantially greater in autistic children. Paradoxically, despite these deficiencies, many autistic children present with higher body mass index than their peers, suggesting they consume adequate calories but from a nutritionally limited range of foods.

    The most commonly reported deficiencies include:

    • Vitamin D: Consistently lower across multiple studies
    • B vitamins: Including folate, B12, thiamine (B1), riboflavin (B2), and niacin
    • Vitamin A: Associated with autism traits
    • Calcium and iron: Related to restricted dietary variety
    • Essential fatty acids: Particularly omega-3 fatty acids

    In a recent review of case reports, vitamin D deficiency was found in 25% of cases, vitamin A in 24.8%, B-vitamins in 18%, calcium in 10.8%, and iron in 9.6%. Concerningly, severe deficiency diseases once thought eradicatedโ€”such as scurvy (vitamin C deficiency) and beriberi (thiamine deficiency)โ€”are being documented in case reports of autistic children with extremely restricted diets.

    Relationship with ARFID

    The relationship between autism and Avoidant/Restrictive Food Intake Disorder (ARFID) is increasingly recognised as clinically important. A recent meta-analysis found that autism diagnoses occurred in 16.27% of individuals with ARFID, while ARFID prevalence in autistic groups was 11.41%. This represents a 15-fold increase compared to the general population.

    In a large autism cohort study, approximately 21% of autistic children met criteria for ARFID, with an additional 17% of their parents also at heightened risk, suggesting both genetic susceptibility and lifelong persistence of feeding difficulties.

    ARFID in autism differs from typical “picky eating” in several important ways:

    1. Sensory sensitivities: Many autistic children experience heightened sensory responses to food textures, colours, smells, and temperatures
    2. Need for sameness: Rigid adherence to specific brands, presentation styles, or eating routines
    3. Fear of adverse consequences: Anxiety about choking, vomiting, or gastrointestinal discomfort
    4. Lack of interest in eating: Some children show minimal appetite or food motivation

    The co-occurrence is clinically significant because ARFID-level restriction leads to more severe nutritional consequences than typical food selectivity, and standard feeding interventions may need modification for autistic children who struggle with change and new experiences.

    Clinical Monitoring

    Given the high prevalence of nutritional issues, systematic monitoring should be part of routine autism care.

    Initial Assessment

    A comprehensive nutritional assessment should include:

    1. Dietary history: Use food frequency questionnaires and 3-day food diaries to assess variety and adequacy
    2. Anthropometric measurements: Height, weight, BMI, and growth trajectory monitoring
    3. Clinical examination: Looking for signs of specific deficiencies (e.g., pallor, poor wound healing, dental problems)
    4. Gastrointestinal symptoms: Constipation, diarrhoea, abdominal pain, and reflux are common comorbidities
    5. Feeding behaviour assessment: Questionnaires such as the Brief Autism Mealtime Behavior Inventory (BAMBI) can quantify difficulties

    Biochemical Monitoring

    While routine screening of all autistic children is not yet standard practice, targeted testing should be considered for:

    • Children with very restricted diets (fewer than 20 accepted foods)
    • Those on restrictive therapeutic diets (gluten-free, casein-free, ketogenic)
    • Children with faltering growth or weight loss
    • Those with clinical signs of deficiency

    Recent evidence suggests autistic children are at high risk for micronutrient deficiencies even with normal growth parameters, indicating that anthropometric measurements alone are insufficient for detecting nutritional problems.

    Useful investigations include:

    • Full blood count (for anaemia)
    • Ferritin (iron stores)
    • Vitamin D (25-hydroxyvitamin D)
    • Vitamin B12 and folate
    • Calcium, magnesium, zinc
    • Consider vitamin A in children with very restricted diets

    Ongoing Monitoring

    Children with identified nutritional issues or significant feeding difficulties should be monitored at 3-6 month intervals, with repeat biochemical testing guided by initial findings and dietary changes.

    Management Approaches

    Nutritional management in autism requires an individualised, neuroaffirming approach:

    1. Psychological and Behavioural Interventions

    Evidence-based psychological therapies specifically designed for ARFID are now showing promise, though they often require adaptation for autistic children to be neuro-affirming and effective.

    Cognitive-Behavioural Therapy for ARFID (CBT-AR):
    For older children and adolescents (typically 10+ years) with sufficient language skills, CBT-AR is an evidence-based approach that addresses the maintaining mechanisms of restricted eating, such as sensory sensitivity, lack of interest, and fear of negative consequences (e.g., choking).

    • Evidence: Research indicates that CBT-AR is feasible and acceptable for young people, leading to significant improvements in ARFID severity and weight gain.
    • Autism Adaptation: Standard CBT-AR may need modification to accommodate autistic thinking styles, such as using visual supports, slowing the pace of exposure, and validating rather than challenging sensory experiences.

    Parent-Led and Family-Based Treatment (FBT-AR):
    For younger children or those who may struggle with individual talking therapy, parent-led approaches empower parents to support their childโ€™s nutritional intake while managing anxiety around new foods.

    • Evidence: Studies on Family-Based Treatment for ARFID demonstrate its effectiveness in improving weight and dietary volume in children aged 5โ€“12.
    • Parent Training Protocols: Recent research supports “parent-therapist” models where clinicians train parents in specific strategies to use at home, reducing the need for the child to be in constant therapy sessions.
    • Approach: This involves parents taking a supportive lead in mealtime decisions and “scaffolding” exposures to new foods, preventing avoidance while maintaining a supportive, non-coercive environment.

    Behavioural Feeding Strategies:
    These structured approaches can be integrated into parent-led care, adapted to respect autistic sensory profiles:

    • Gradual exposure: Low-pressure introduction to new foods through play or exploration, without forced consumption
    • Food chaining: Introducing foods similar in texture, colour, or flavour to accepted “safe foods”
    • Sensory-based feeding therapy: Addressing underlying sensory processing differences rather than just behaviour
    • Mealtime structure: Consistent routines and expectations to reduce anxiety
    • Neuroaffirming goals: Focusing on health and comfort rather than forcing compliance with neurotypical eating norms

    These interventions work best when implemented by trained feeding therapists in collaboration with families. It’s important to note that progress can be slow, and maintaining already-accepted foods is as important as adding new ones.

    2. Nutritional Supplementation

    When dietary modification alone is insufficient:

    • Multivitamin/mineral supplements: Can address multiple micronutrient gaps
    • Vitamin D: Often requires supplementation in UK climate, especially with limited dairy and outdoor exposure
    • Calcium: Consider if dairy products rejected; choose appropriate formulation (calcium carbonate typically preferred)
    • Iron: If deficient, with appropriate monitoring
    • Omega-3 fatty acids: Some evidence for behavioural benefits, though results are mixed

    Supplementation should be individualised based on identified deficiencies rather than empirical. Autistic children may have sensory difficulties with tablets or liquid supplements, so formulation mattersโ€”chewables, powders that can be hidden in accepted foods, or patches may be necessary options.

    3. Dietary Modifications

    Several therapeutic diets are commonly tried in autism, though evidence remains limited:

    Gluten-free/casein-free (GFCF) diet: While some families report improvements in gastrointestinal symptoms or behaviour, large-scale randomised controlled trials have not definitively proven efficacy, and these diets risk nutritional deficiencies in fibre, iron, calcium, and B vitamins if not carefully planned.

    Ketogenic diet: Some case reports show promise, but strict adherence is challenging, and there are risks of nutrient deficiencies, gastrointestinal discomfort, and kidney stones requiring close monitoring.

    If families wish to try elimination diets, involvement of a registered dietitian is essential to ensure nutritional adequacy and proper implementation. Random elimination without professional guidance frequently worsens nutritional status.

    4. Addressing Gastrointestinal Issues

    Many autistic children experience constipation, diarrhoea, reflux, or abdominal pain. Treating these symptoms may improve appetite and food acceptance:

    • Adequate hydration and fibre (introduced slowly)
    • Probiotics (limited evidence but generally safe)
    • Medical management of constipation or reflux as needed
    • Investigation for food intolerances if symptoms suggest (not routine)

    5. Family-Centred Care

    Parents of autistic children with feeding difficulties report high levels of mealtime stress. Support should include:

    • Realistic goal-setting
    • Reduction of mealtime pressure and battles
    • Strategies for family meals despite dietary differences
    • Connection with support groups
    • Mental health support for parental stress

    6. When to Consider Gastrostomy

    For a small minority of autistic children, even intensive feeding therapy, psychological interventions, and oral supplementation are not enough to maintain safe nutrition and hydration. In these situations, temporary or longโ€‘term gastrostomy (a feeding tube placed directly into the stomach) can be lifeโ€‘saving and may actually reduce distress around eating. Studies in children with neurodevelopmental disabilities show that gastrostomy feeding is associated with improved growth, fewer feeding-related problems, and better reported quality of life for both children and caregivers. Clinical guidelines from paediatric nutrition groups therefore recommend gastrostomy as the preferred route for longโ€‘term intragastric feeding in children with neurological or developmental conditions when oral intake is persistently inadequate, provided decisions are made within a multidisciplinary team and with full discussion of risks, benefits, and family preferences. For some families, establishing reliable tube feeding allows pressure to be taken off mealtimes so that oral eating can be slowly rebuilt in a lowโ€‘stress, neuroaffirming way, rather than being driven by fear of weight loss.

    Outcomes and Prognosis

    The long-term nutritional outcomes for autistic children vary considerably:

    Short-term interventions: Feeding therapy and sensory-based interventions show promise in improving food acceptance and mealtime experiences, though individual responses vary widely.

    Nutritional supplementation: When severe deficiencies are identified and treated, even severe cases have shown symptom resolution or improvement with appropriate micronutrient replacement therapy. However, without addressing underlying restrictive eating patterns, deficiencies are likely to recur.

    Persistence into adulthood: Research suggests that feeding difficulties and ARFID symptoms may persist, with up to 17% of parents of autistic children also meeting criteria for ARFID, indicating lifelong risk. This highlights the importance of early intervention and long-term monitoring.

    Impact on development: Some research suggests correlations between specific nutrient deficiencies (particularly vitamin A and vitamin D) and autism traits, though causality remains unclear. Addressing nutritional deficiencies is unlikely to “cure” autism but can optimise overall health and potentially improve quality of life.

    Need for ongoing support: Current evidence emphasises that sustained intervention and monitoring are essential, as the long-term effects of nutritional interventions and their sustainability require further research.

    The Critical Importance of Dental Care

    Nutritional challenges in autistic children extend beyond deficiencies and dietary intake to include significant oral health concerns. Research demonstrates that autistic children experience higher rates of dental caries, periodontal disease, and poor oral hygiene compared to their neurotypical peers, with many requiring dental treatment under general anaesthesia due to sensory and anxiety barriers.

    Prevalence of Dental Problems

    Studies show that autistic children have significantly poorer oral hygiene and higher caries rates compared to controls, with boys particularly affected. The relationship between nutritional issues and dental health is bidirectional: restricted diets high in processed, sugary foods increase caries risk, while sensory sensitivities and anxiety make oral hygiene maintenance difficult.

    Autistic children commonly exhibit oral habits including bruxism (teeth grinding), tongue thrusting, picking at the gingiva, and lip biting. Combined with difficulties in brushing and flossing, these factors create substantial oral health risks that require proactive management.

    The Need for Specialist-Trained Practitioners

    Challenges in providing adequate dental care for autistic individuals are recognised by parents, caregivers, and dental practitioners, leading to a higher prevalence of unaddressed dental needs. Major barriers include sensory sensitivities, communication difficulties, and a shortage of autism-trained dental professionals.

    In the UK, there is now a legal requirement for healthcare professionals, including dental staff, to receive autism-specific training appropriate to their role, following the Oliver McGowan Mandatory Training initiative introduced in 2022. This legislation arose from tragic circumstances where lack of understanding about autism led to serious harm.

    Why specialist training matters:

    Research demonstrates that dentists with prior experience or training in managing autistic patients achieve better treatment success and higher parental confidence in dental care approaches. Specialist training encompasses:

    • Understanding sensory sensitivities and how they manifest in the dental environment
    • Effective communication strategies tailored to autistic individuals
    • Neuroaffirming techniques that respect neurodiversity
    • Environmental modifications to reduce anxiety and sensory overload
    • Collaboration with families and caregivers as partners in care
    • Use of desensitisation programmes and visual supports

    Studies show that sensory-adapted dental environments, where modifications such as dimmed lighting, reduced noise, and careful attention to sensory input are implemented, result in reduced physiological stress and distress compared to standard dental settings.

    Practical Strategies for Dental Care

    For families managing dental care for autistic children:

    1. Seek autism-trained practitioners: Look for dentists who have completed autism-specific training or practices designated as Certified Autism Centers. In the UK, community dental services and special care dentistry services provide specialist care for those who cannot access general dental practice.
    2. Prepare for visits: Use visual supports, social stories, and familiarisation visits to reduce anxiety. Some practices offer pre-appointment tours and sensory-friendly appointment times (first or last appointment of the day).
    3. Communicate needs clearly: Inform the dental team about specific sensory sensitivities, communication preferences, triggers, and calming strategies. Many practices now record these preferences to avoid families having to repeat information at each visit.
    4. Home oral hygiene adaptations: Consider specialised toothbrushes (three-sided brushes, U-shaped whole mouth brushes), alternative toothpaste flavours or unflavoured options, and visual timers for two-minute brushing.
    5. Address sensory issues: Allow children to bring comfort items, noise-cancelling headphones, sunglasses for bright lights, or tablets to watch during treatment. Weighted blankets can provide calming sensory input.
    6. Build gradually: For children with significant anxiety, desensitisation programmes that gradually introduce dental experiences (sitting in the chair, looking at instruments, brief examinations) can be highly effective.

    Integration with Nutritional Care

    Dental health should be integrated into the broader nutritional management plan. Paediatricians and dietitians working with autistic children should:

    • Coordinate with dental professionals, particularly when dietary modifications are planned
    • Consider the dental implications of restricted diets (e.g., calcium for tooth development)
    • Address the oral health consequences of high-sugar selective diets
    • Support families in establishing oral hygiene routines alongside dietary interventions
    • Recognise that untreated dental pain or disease may further restrict already limited food acceptance

    The high rates of dental treatment under general anaesthesia in this population underscore the importance of prevention through early intervention, specialist-trained practitioners, and family support.

    Practical Recommendations

    For parents and paediatricians, a pragmatic approach includes:

    1. Screen routinely: Ask about diet variety, mealtime difficulties, and gastrointestinal symptoms at health checks
    2. Quantify the problem: Use structured questionnaires to assess feeding difficulties systematically
    3. Monitor growth: Regular height, weight, and BMI measurements plotted on growth charts
    4. Consider testing: Low threshold for biochemical screening in children with restricted diets
    5. Refer appropriately: Early involvement of dietitians and feeding therapists for significant difficulties; refer to specialist dental services when needed
    6. Avoid unsupported interventions: Be cautious about expensive supplements or elimination diets without evidence or professional guidance
    7. Support families: Acknowledge the stress and provide realistic expectations about progress
    8. Take a long view: Nutritional management in autism is typically a marathon, not a sprint
    9. Coordinate dental care: Ensure autistic children have access to autism-trained dental practitioners and integrate oral health into overall care planning

    Conclusion

    Nutritional issues in autistic children are common, clinically significant, and amenable to intervention. The interplay between sensory sensitivities, preference for routine, ARFID, and gastrointestinal symptoms creates complex feeding challenges that require individualised, multidisciplinary management.

    While there is no single “autism diet,” ensuring nutritional adequacy through careful monitoring, targeted supplementation when needed, and evidence-based, neuroaffirming feeding interventions can improve outcomes. As research in this area continues to evolve, the focus should remain on practical strategies that optimise nutrition, reduce family stress, and support the overall health and development of autistic children.

    Key References

    1. Alhrbi, M., et al. (2025). Nutritional Status of Children Diagnosed With Autism Spectrum Disorder: A Systematic Review and Meta-Analysis. Journal of Human Nutrition and Dietetics. https://doi.org/10.1111/jhn.70099
      • This comprehensive meta-analysis compared nutritional status between autistic children and typically developing children, finding significantly lower intakes of protein, calcium, vitamin A, vitamin D, vitamin K, folate, riboflavin, thiamine, and niacin in the autism group.
    2. Sader, M., Weston, A., Buchan, K., et al. (2025). The Co-Occurrence of Autism and Avoidant/Restrictive Food Intake Disorder (ARFID): A Prevalence-Based Meta-Analysis. International Journal of Eating Disorders, 58(3), 473-488. https://doi.org/10.1002/eat.24369
      • This meta-analysis of 21 studies (7,442 participants) found autism diagnoses in 16.27% of those with ARFID and ARFID prevalence of 11.41% in autistic groups.
    3. Daniel, K.S., Jiang, Q., & Wood, M.S. (2025). The Increasing Prevalence of Autism Spectrum Disorder in the U.S. and Its Implications for Pediatric Micronutrient Status: A Narrative Review of Case Reports and Series. Nutrients, 17(6), 990. https://doi.org/10.3390/nu17060990
      • Analysed 44 cases from 27 articles documenting severe micronutrient deficiencies in autistic children, with vitamin D deficiency in 25% of cases, vitamin A in 24.8%, B-vitamins in 18%, calcium in 10.8%, and iron in 9.6%.
    4. Al-Beltagi, M. (2024). Nutritional Management and Autism Spectrum Disorder: A Systematic Review. World Journal of Clinical Pediatrics, 13(4), 99649. https://doi.org/10.5409/wjcp.v13.i4.99649
      • Systematic review of 316 studies examining dietary interventions, supplements, feeding therapy, and behavioural strategies, emphasising the need for personalised, multidisciplinary approaches.
    5. Koomar, T., Thomas, T.R., Pottschmidt, N.R., Lutter, M., & Michaelson, J.J. (2021). Estimating the Prevalence and Genetic Risk Mechanisms of ARFID in a Large Autism Cohort. Frontiers in Psychiatry, 12, 668297. https://doi.org/10.3389/fpsyt.2021.668297
      • First prevalence estimate of ARFID in a large autism cohort (SPARK study, N=5,157 probands), finding approximately 21% of autistic children and up to 17% of their parents at heightened risk for ARFID.
    6. Nogueira-de-Almeida, C.A., de Araรบjo, L.A., da V Ued, F., et al. (2025). Nutritional Factors and Therapeutic Interventions in Autism Spectrum Disorder: A Narrative Review. Children, 12(2), 202. https://doi.org/10.3390/children12020202
      • Comprehensive narrative review exploring how nutritional, gastrointestinal, social, and epigenetic factors interact in autism, with implications for clinical management and intervention strategies.
    7. Shmaya, Y., Eilat-Adar, S., Leitner, Y., Reif, S., & Gabis, L. (2015). Nutritional deficiencies and overweight prevalence among children with autism spectrum disorder. Research in Developmental Disabilities, 38, 1-6. https://doi.org/10.1016/j.ridd.2014.12.016
      • Study comparing autistic children to their typically developing siblings, demonstrating significantly higher cumulative nutritional deficiencies in the autism group across multiple micronutrients, while simultaneously showing higher BMI.
    8. Shaik, K.F., Saddu, S.C., & Manasa, R. (2024). Challenges and Solutions in Managing Dental Problems in Children with Autism. World Journal of Clinical Pediatrics, 14(3), 106778. https://doi.org/10.5409/wjcp.v14.i3.106778
      • Systematic review examining barriers to dental care including sensory sensitivities and shortage of autism-trained professionals, with effective interventions including sensory adaptations and interdisciplinary collaboration.
    9. da Silva, S.N., Gimenez, T., Souza, R.C., Mello-Moura, A.C.V., Raggio, D.P., Morimoto, S., Lara, J.S., Soares, G.C., & Tedesco, T.K. (2017). Oral health status of children and young adults with autism spectrum disorders: Systematic review and meta-analysis. International Journal of Paediatric Dentistry, 27(5), 388-398. https://doi.org/10.1111/ipd.12274
      • Systematic review and meta-analysis finding controversial data on dental caries prevalence in autism, with significantly higher prevalence of bruxism, traumatic dental injuries, and erosive tooth wear compared to typically developing children.
    10. Lee, R., & Clough, S. (2024). Autism Spectrum Condition: An Update for Dental Practitioners – Part 1 & 2. British Dental Journal, 237, 801-806 & 877-882. https://doi.org/10.1038/s41415-024-8065-5 and https://doi.org/10.1038/s41415-024-8066-4
      • Two-part series updating dental practitioners on correct terminology, prevalent comorbidities, barriers to care, current UK legislation, and practical strategies for providing autism-inclusive dental care.
    11. Mustafa, R., Mukhtar, M.S., Alshami, M., & Gujjar, K. (2025). Oral Hygiene Status in Children on the Autism Spectrum Disorder. Journal of Clinical Medicine, 14(6), 1868. https://doi.org/10.3390/jcm14061868
      • Cross-sectional study demonstrating significantly poorer oral hygiene and higher caries rates in autistic children compared to controls, highlighting the need for tailored interventions and specialized dental care.
    12. Thomas, J. J., Becker, K. R., Breithaupt, L., et al. (2020). Cognitive-behavioral therapy for avoidant/restrictive food intake disorder (CBT-AR): Feasibility, acceptability, and proof-of-concept for children and adolescents. International Journal of Eating Disorders, 53(10), 1636-1646. https://doi.org/10.1002/eat.23355
      • This study provided proof-of-concept for CBT-AR in children and adolescents (ages 10-17), demonstrating that it is a feasible and acceptable treatment that leads to significant reductions in ARFID symptom severity.
    13. Lock, J., Robinson, A., Sadeh-Sharvit, S., et al. (2019). Feasibility of family-based treatment for avoidant/restrictive food intake disorder in children and adolescents. International Journal of Eating Disorders, 52(6), 650-656. https://doi.org/10.1002/eat.23078
      • A randomised clinical trial exploring Family-Based Treatment (FBT) adapted for ARFID, showing it is a feasible intervention that supports weight gain and dietary improvement in younger patients.
    14. Sullivan, P. B., Juszczak, E., Bachlet, A. M. E., et al. (2005). Gastrostomy tube feeding in children with cerebral palsy: a prospective, longitudinal study. Developmental Medicine & Child Neurology, 47(2), 77โ€“85. https://doi.org/10.1017/s0012162205000162
      • A longitudinal study demonstrating significant improvements in weight gain and growth in children with neurodevelopmental disabilities following gastrostomy placement, alongside reduced feeding times.
    15. James, R. M., et al. (2012). Timing of gastrostomy insertion in children with a neurodisability. BMJ Open, 2(6), e001793. https://doi.org/10.1136/bmjopen-2012-001793
      • A systematic review highlighting that gastrostomy insertion is effective for improving nutritional status and physical health in children with neurodisabilities, though timing should be individualized.
    16. Jennuvat, S. (2023). The Outcomes and Quality of Life in Children with Neurodevelopmental Disabilities after Percutaneous Endoscopic Gastrostomy. Journal of the Medical Association of Thailand, 106(1), 88โ€“94.
      • A study assessing post-gastrostomy outcomes, reporting significant improvements in nutritional status and caregiver-reported quality of life, with reduced feeding-related stress.
    17. Backman, E., & Sjรถgreen, L. (2020). Gastrostomy tube insertion in children with developmental or acquired disorders: a register-based study. Developmental Medicine & Child Neurology, 62(9), 1075-1082.
      • A large register-based study confirming that gastrostomy is a safe and effective intervention for nutritional support in children with developmental disorders, often leading to stabilized weight and health.

    Helpful Resources

    For UK Parents and Families

    Feeding, Nutrition & ARFID Resources (Specific):

    • ARFID Awareness UK: https://www.arfidawarenessuk.org/ – Comprehensive information, resources, treatment approaches, and support for parents and professionals; includes downloadable resources and shop with cards to inform schools/restaurants
    • CNTW NHS Foundation Trust ARFID Resources: https://www.cntw.nhs.uk/resource-library/support-for-avoidant-restrictive-food-intake-disorder-arfid/ – Free video webinar series (8 modules) for parents, practical tools, advice resources, and communication guides created by specialist ARFID dietitian
    • North East and North Cumbria NHS ARFID Support: https://northeastnorthcumbria.nhs.uk/here-to-help-you/health-advice-and-support/children-and-young-people-support/help-for-eating-issues/ – Practical strategies for supporting children with eating difficulties
    • Beat Eating Disorders – ARFID Information: https://www.beateatingdisorders.org.uk/get-information-and-support/about-eating-disorders/types/arfid/ – National eating disorder charity with information and support services
    • Beat – Endeavour Support Group: https://www.beateatingdisorders.org.uk/get-information-and-support/support-someone-else/endeavour-arfid-carer-support-group/ – 8-week peer support group for parents/carers of children aged 5-15 with ARFID behaviours, delivered via Zoom
    • British Dietetic Association ARFID Information: https://www.bda.uk.com/resource/arfid-help-my-child-wont-eat.html – Professional guidance on ARFID for parents and healthcare professionals
    • British Dietetic Association: https://www.bda.uk.com/ – Find registered dietitians specialising in paediatric autism
    • Royal College of Speech and Language Therapists: https://www.rcslt.org/ – Information on feeding therapy and finding local speech and language therapists

    General Autism & Family Support:

    • NHS Autism Support: https://www.nhs.uk/conditions/autism/support/ – Information on local support groups, financial benefits, and services
    • Autism Central: https://www.autismcentral.org.uk/ – NHS-funded peer education programme offering autism resources, coaching, and training for families and carers across England
    • NHS England Autism Resources: https://www.england.nhs.uk/learning-disabilities/about/autism/ – Guidance on accessing services and mental health support
    • National Autistic Society: https://www.autism.org.uk/ – UK’s leading autism charity with comprehensive information, helpline (0808 800 4104), and local services directory
    • Ambitious About Autism: https://www.ambitiousaboutautism.org.uk/ – Support for children, young people, and families with practical advice and resources
    • Autism Education Trust: https://www.autismeducationtrust.org.uk/parents – Resources for parents to support autistic children in education
    • Contact (for families with disabled children): https://contact.org.uk/ – Helpline: 0808 808 3555 – Advice on accessing services and support

    Dental Care Resources:

    • National Autistic Society – Dental Care Guide: https://www.autism.org.uk/advice-and-guidance/topics/physical-health/going-to-the-dentist – Comprehensive guidance for families and dentists on autism-friendly dental care
    • NHS England Special Care Dentistry: https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/09/guid-comms-specl-care-dentstry.pdf – Guidance on accessing specialist dental services
    • Oliver McGowan Mandatory Training: https://www.e-lfh.org.uk/programmes/the-oliver-mcgowan-mandatory-training-on-learning-disability-and-autism/ – Free e-learning for healthcare professionals including dental staff
    • NHS Mouth Care Matters: Available through e-Learning for Healthcare – Training module specifically for caring for oral health of autistic children
    • Community Dental Services: Contact your local NHS trust for referrals to specialist dental services for those unable to access general dental practice

    For US Parents and Families

    Feeding, Nutrition & ARFID Resources (Specific):

    • ARFID Collaborative: https://www.arfidcollaborative.com/ – Directory of ARFID specialists including psychologists, dietitians, and therapists across the USA
    • Feeding Matters: https://www.feedingmatters.org/ – National non-profit dedicated to paediatric feeding disorders, with educational resources and support
    • Boston Children’s Hospital ARFID Program: https://www.childrenshospital.org/programs/arfid – Comprehensive ARFID program with medical, nutritional, and psychological support; includes guide to local ARFID feeding therapy and SLP resources
    • Stanford Medicine Children’s Health ARFID Program: https://www.stanfordchildrens.org/en/services/eating-disorders/arfid.html – Specialized treatment for ages 9-24 with inpatient and outpatient options
    • Children’s Health Dallas ARFID Program: https://www.childrens.com/specialties-services/specialty-centers-and-programs/psychiatry-and-psychology/conditions-and-programs/avoidant-restrictive-food-intake-disorder – 4-week intensive outpatient program for ages 5-17
    • Duke Center for Eating Disorders ARFID Program: https://www.dukehealth.org/treatments/psychiatry/eating-disorders/avoidantrestrictive-food-intake-disorder-arfid – Parent training workshops and immersive family programs
    • The Emily Program – ARFID Treatment: https://emilyprogram.com/eating-disorders-we-treat/avoidant-restrictive-food-intake-disorder/ – Residential and outpatient ARFID treatment with family-based approach
    • American Speech-Language-Hearing Association (ASHA): https://www.asha.org/ – Information on feeding and swallowing disorders; find certified SLPs
    • Academy of Nutrition and Dietetics: https://www.eatright.org/ – Find registered dietitian nutritionists specialising in autism
    • Marcus Autism Center Nutrition Resources: https://www.marcus.org/autism-resources – Evidence-based feeding and nutrition guidance

    General Autism & Family Support:

    • Autism Speaks: https://www.autismspeaks.org/ – Resource guide, tool kits, and family services including the Autism Response Team (888-288-4762)
    • Autistic Self Advocacy Network (ASAN): https://autisticadvocacy.org/ – Resources from autistic-led organisation
    • Organization for Autism Research: https://researchautism.org/ – Evidence-based resources and guides for families
    • The Arc: https://thearc.org/ – Advocacy organisation for people with intellectual and developmental disabilities, including autism
    • Family Voices: https://familyvoices.org/ – Family-led organisation providing support for families of children with special health care needs
    • CDC Autism Information: https://www.cdc.gov/autism/ – Information on signs, diagnosis, treatment, and data

    Dental Care Resources:

    • Autism Speaks Dental Tool Kit: https://www.autismspeaks.org/tool-kit/dentist-for-kids-with-autism – Practical guide for families preparing for dental visits, including visual supports and communication strategies
    • IBCCES Certified Autism Centers: https://www.certifiedautismcenter.com/ – Directory of dental practices certified as autism-friendly after completing specialized training
    • Special Care Dentistry Association: https://www.scdaonline.org/ – Professional organization with resources for finding dentists trained in special needs care
    • University of British Columbia CIRCA – Autism and Neurodiversity in Dentistry: https://circa.educ.ubc.ca/autism-and-neurodiversity-in-dentistry/ – Free online training program for dental professionals (also valuable for families to understand best practices)

    This article is intended for educational purposes. Parents should work with their child’s healthcare team before making significant dietary changes or starting supplements. The resources listed above are provided for informational purposes and do not constitute endorsement.

  • Leucovorin in autism

    Leucovorin in autism

    In the complex landscape of autism research, few stories have been as compelling as the discovery of cerebral folate deficiency. This is a condition where the brain is starved of essential folate despite normal blood levels. This biological mismatch can have profound effects on development, communication, and behaviour, but it also points toward a targeted, promising treatment: leucovorin.

    The “Brain Starvation” Paradox

    For years, the medical community assumed that if a child had normal folate levels in their blood, their brain had enough too. We now know this isn’t always true. From the results of the small-scale studies that have been done, it appears that many autistic children have their “gatekeepers” that transport folate across the blood-brain barrier blocked, often by autoantibodies that attack the folate receptor alpha (FRฮฑ) or by genetic variants that slow transport down, or both.

    The result is a paradox: a body with plenty of folate, but a brain running on empty. Because folate is critical for neurotransmitter production, gene regulation, and DNA repair, this deficiency can contribute to core autistic traits, including repetitive behaviours, language delays, sleep problems, and anxiety.

    Why Leucovorin?

    Leucovorin (also known as folinic acid) is a special, metabolically active form of folate. Unlike standard folic acid, which requires multiple enzyme steps to become useful and must use the primary blocked transporter, leucovorin has a unique advantage: it can use a “backdoor” into the brain (the Reduced Folate Carrier).

    When given in sufficient doses, leucovorin bypasses the blockage, restoring brain folate levels. The small-scale clinical trials that have been done have shown that for some children, especially those with folate receptor autoantibodies, this treatment can lead to significant improvements in:

    • Verbal communication and language
    • Social interaction and awareness
    • Attention and reduced irritability

    A Guide for Parents and Professionals

    Navigating the science of folate metabolism can be overwhelming. To help families and clinicians understand the mechanisms, evidence, and practicalities of this treatment, I have written a detailed guide: Leucovorin for Autism: A Guide for Parents and Professionals.

    This book walks you through the research historyโ€”from the initial discovery of cerebral folate deficiency to the latest double-blind clinical trials. It explains how to test for autoantibodies, what the genetic markers mean, and what families might realistically expect from a trial of leucovorin.

    For those interested in learning more about this treatment pathway, you can find further resources and information at leucovorin-info.co.uk.

    While leucovorin is not a “cure” for autism, for the right child, it appears to offer real hope that it might be a vital key that helps to unlock potential, easing the biological hurdles that make children’s development and their ability to benefit from supportive therapies harder than it needs to be. Larger scale studies have been commissioned by the USA’s Food and Drug Administration (FDA) to see if the optimism generated by the results of the earlier studies is confirmed in rigorous studies involving larger numbers of children. Meanwhile, the FDA has given its approval for the prescription of Leucovorin for confirmed cerebral folate deficiency.

  • Sleep Struggles in Autism: Unlocking the Science for Better Nights

    Sleep Struggles in Autism: Unlocking the Science for Better Nights

    Sleep problems affect 50-80% of children with autism, far exceeding the 25% prevalence in typically developing children, and often persist from infancy into adolescence. These disturbances, including prolonged sleep onset and frequent night wakings, exacerbate core autism traits, behavioural challenges, and family stress, underscoring the need for targeted assessment and intervention.

    Biological Underpinnings

    Sleep problems in autistic children aren’t just about bedtime battlesโ€”there are real biological differences happening in the brain and body. Research shows that autistic children often have imbalances in certain brain chemicals (like serotonin and melatonin) that affect their natural sleep-wake cycles. Some children have genetic variations that mean their bodies produce less melatonin at night, which is why they struggle to feel sleepy at bedtime. Studies have even found that certain brain differences present from infancy can predict which children will develop sleep difficulties later on.

    When researchers study autistic children’s sleep in detail using special monitoring equipment, they find significant differences compared to non-autistic children. Autistic children spend less time in REM sleepโ€”the deep dreaming stage that’s crucial for memory and learning (about 15% of the night compared to 23% in other children). They also wake up more frequently during the night. These disruptions mean the brain doesn’t get the restoration it needs, which affects memory, learning, and how children cope during the day.

    Types of Sleep Disturbances

    The most common sleep challenges include children refusing to go to bed or taking more than 20 minutes to fall asleep (affecting about half of autistic children), waking up during the night, not getting enough sleep overall, and waking too early in the morning.

    Many autistic children (around 53%) experience things like night terrors or sleepwalking. About a quarter have breathing difficulties during sleep, such as snoring or sleep apnea. Nearly a third struggle with excessive tiredness during the day, even when they seem to have slept enough.

    These patterns change as children grow. Younger children are more likely to resist bedtime and experience night terrors or sleepwalking, while teenagers tend to struggle more with falling asleep at night and feeling exhausted during the day.

    Assessment and Contributing Medical Factors

    Start by getting a clear picture of your child’s sleep patterns. You can use questionnaires designed specifically for tracking children’s sleep problems, or keep a sleep diary to record what’s actually happening night by night. There are free apps available like SNappD that can help you track this objectively.

    It’s important to rule out physical problems that might be disrupting sleep. Common culprits include:

    • Tummy troubles: Constipation (which affects about a quarter of autistic children), reflux, or other pain that makes lying down uncomfortable
    • Dental issues: Teeth grinding or untreated tooth decay, especially if your child finds tooth-brushing difficult due to sensory sensitivities
    • Other medical conditions: Allergies, low iron levels, low vitamin D levels, epilepsy, or side effects from medications

    If you suspect your child has breathing problems during sleep (like snoring heavily or seeming to stop breathing briefly), ask your doctor about a sleep study. It’s also worth considering whether anxiety or ADHD might be contributing to sleep difficultiesโ€”these often go hand-in-hand with autism and addressing them can significantly improve sleep.


    Management Strategies

    For sleep problems in autism, it is vital to focus on behavioural interventions as the first line of treatment, and to take your time with these – several weeks of persistent effort is the minimum to to give any new strategy a fair try. Medication with melatonin can be effective (please see below) but even medication only works well if used hand-in-hand with a behavioural approach.

    Research has shown that among the various behavioural interventions available, exercise stands out as the most effective option for improving sleep quality and duration for children on the autism spectrum.

    Structured physical activities such as swimming, cycling, and trampolining work particularly well for children with autism, as these exercises provide sensory input whilst being predictable and repetitive.

    When addressing demand avoidance around exercise, it’s essential to incorporate your child’s special interests, such as using weighted balls themed around dinosaurs or creating obstacle courses with their favourite characters. Building exercise into daily routines rather than presenting it as a separate task, offering choices between different activities, and starting with very brief sessions can help reduce anxiety around new activities, whilst gradually establishing positive associations with physical movement.


    Routines and Sleep Hygiene

    The goal is to help your child learn to fall asleep on their own, so they’re not depending on you being there every night. This happens graduallyโ€”you slowly reduce how much you’re involved in bedtime while making your child feel safe and capable throughout the process.

    This might look like moving your chair a little further from the bed each night, staying for slightly less time, or checking in at longer intervals. At the same time, you praise and reward each small step of independenceโ€”whether that’s verbal encouragement, a sticker chart, or the promise of a special activity the next morning. The key is making changes slowly and predictably, so your child builds confidence rather than feeling abandoned.

    Over time, your child starts to associate bedtime with their own ability to settle down, rather than needing you right there. They develop skills to soothe themselves and feel safe falling asleep independently. It takes patience and consistency, but these gradual changes help shift the balance from you doing the work of getting them to sleep, to them being able to manage it themselves.


    Sensory and Lifestyle Modifications

    Pay attention to your child’s sensory needs. Some children sleep better with a weighted blanket providing gentle pressure, white noise blocking out distracting sounds, or other calming sensory input that helps them feel settled and secure.

    Make sure your child gets plenty of physical activity during the dayโ€”things like climbing, pushing, pulling, or jumping that give their body that “heavy work” input. Just avoid vigorous exercise too close to bedtime, as this can be too alerting. Also look at diet: cut out caffeine (which hides in chocolate, fizzy drinks, and some sweets), and work with your doctor to address any tummy problems like constipation or reflux that might be disrupting sleep.


    Pharmacological Options

    Melatonin is the most common sleep medication for autistic children. A dose of 1-6mg taken before bedtime can help children fall asleep faster, and it works for about 60-80% of childrenโ€”especially when combined with good sleep routines and bedroom setup. Keep tracking sleep patterns in a diary so you can see whether it’s actually helping. Working with a team of professionals (like your GP, paediatrician, and sleep specialists) tends to give the best results.

    Short-term use of melatonin (up to 3 months) is generally considered safe. However, we don’t yet have strong research on the long-term safety of melatonin in children, so if your child needs it for longer periods, they should be monitored regularly by a healthcare professional to check for any side effects or concerns.

    This diagram shows how sleep problems in autism rarely have a single cause: biological differences in brain development, core autism features (communication, repetitive behaviours, sensory issues, daily living skills), mental health difficulties (anxiety, associated hyperactiity or comorbid ADHD, behaviour), and physical health problems (constipation, reflux, breathing issues, pain) all interact and feed into each other. By making small, steady adjustments in each of these areas โ€“ for example, treating pain and constipation, supporting communication and sensory needs, and addressing anxiety โ€“ families and clinicians can gradually โ€œnudgeโ€ the whole system towards better, more settled sleep over time.

    Final Thoughts: The Power of Movement

    While the path to better sleep involves addressing many interconnected factors, from biology to bedtime routines, regular physical activity stands out as a powerful, natural tool in your arsenal. Research consistently highlights exercise not just for physical health, but as a potent regulator for the autistic brain, helping to burn off excess energy, reduce anxiety, and reset the body’s internal clock. Whether itโ€™s a structured swimming session, a bounce on the trampoline, or a walk in the fresh air, integrating movement into the day provides the sensory “heavy work” that many autistic children crave to feel grounded. By making exercise a predictable, enjoyable part of daily lifeโ€”tailored to your childโ€™s unique interests, you aren’t just building stronger bodies; you are laying the physiological foundation for calmer evenings and deeper, more restorative rest.



    Resources

    โ€ข Cerebra Sleep Advice Serviceโ€จ Excellent one-to-one support for families of children with brain conditions (including autism). They offer a detailed โ€œSleep Guide,โ€ a sleep card system for specific issues, and a telephone advice service where you can speak directly to a sleep practitioner if you meet their criteria and submit a sleep diary.โ€จ


    โ€ข The National Autistic Society (NAS)โ€จTheir website has a comprehensive โ€œSleep – a guide for parentsโ€ section covering strategies like visual timetables, sensory audits of the bedroom, and melatonin info. They also have an Autism Services Directory to find local support groups.โ€จ


    โ€ข Sleep Action (formerly Sleep Scotland)โ€จWhile originally focused on Scotland, they provide training and resources UK-wide. They run a sleep support line and have specific expertise in neurodevelopmental sleep issues.โ€จ

    References
    Yang H, Lu F, Zhao X, et al. Factors influencing the effect of melatonin on sleep quality in children with autism spectrum disorder: a systematic review and meta-analysis. Sleep Breath. 2025;29(4):262. doi:10.1007/s11325-025-03432-x

    Hรคndel, M., Andersen, H., Ussing, A., Virring, A., Jennum, P., Debes, N., Laursen, T., Baandrup, L., Gade, C., Dettmann, J., Holm, J., Krogh, C., Birkefoss, K., Tarp, S., Bliddal, M., & Edemann-Callesen, H. (2023). The short-term and long-term adverse effects of melatonin treatment in children and adolescents: a systematic review and GRADE assessment. eClinicalMedicine, 61. https://doi.org/10.1016/j.eclinm.2023.102083.

    Zisapel, N. (2022). Assessing the potential for drug interactions and long term safety of melatonin for the treatment of insomnia in children with autism spectrum disorder. Expert Review of Clinical Pharmacology, 15, 175 – 185. https://doi.org/10.1080/17512433.2022.2053520.