When your neurodivergent child faces feeding challenges, finding the right support can feel overwhelming. Whether dealing with neurodivergence, Paediatric Feeding Disorder (PFD), dysphagia, or Avoidant/Restrictive Food Intake Disorder (ARFID), it’s essential to understand the diagnostic process and know where to turn for help. This post outlines key pathways to support, where to find professional help, and how to manage your child’s feeding journey effectively.
Understanding Diagnostic Pathways
The first step to getting the support your child needs is identifying the feeding challenge and understanding the steps for diagnosis. Below are the common pathways for several conditions related to feeding difficulties:
Autism Spectrum Disorder (ASD)
What to Watch For:
- Persistent challenges with communication, sensory sensitivities, and repetitive behaviours that affect mealtimes.
The Process:
- Initial Step: Concerns often emerge through observations at home, nursery, or school. Speak with your GP, health visitor, or educators to start the conversation.
- Referral: Your healthcare professional may refer your child to a developmental paediatrician, child psychologist, or neurodevelopmental team for a full assessment.
- Multidisciplinary Input: A comprehensive assessment typically involves a team of professionals including speech and language therapists (SLTs), occupational therapists (OTs), and educational psychologists. This team can address the communication, sensory, and motor difficulties that impact feeding.
Where to Find Help:
- NHS Services: Your GP can refer you to a local neurodevelopmental team or developmental paediatrician.
- Private Clinics: Private clinics specialising in Paediatric ASC assessment may offer quicker access to diagnostics and therapies.
- Resources: The National Autistic Society, Autism Alliance UK and Ambitious about Autism provide a wealth of information and local support networks for families.
Paediatric Feeding Disorder (PFD)
What to Watch For:
- Growth concerns or failure to thrive.
- Difficulty chewing, swallowing, or transitioning between textures.
- Distress or behavioural issues during mealtimes.
- Sensory aversions to food.
Steps to Diagnosis:
- Speak with Your GP or Paediatrician: Discuss any ongoing feeding concerns. Your GP may offer initial advice and referrals.
- Referral to a Feeding Team: A multidisciplinary team (MDT), often including SLTs, dietitians, and OTs, will assess and address feeding difficulties. It may be that you are referred to one of the specialisms to start with and the MDT is drawn into your child’s care.
- Medical Investigations: Depending on the symptoms, investigations like gastrointestinal studies may be necessary to identify underlying issues, such as reflux.
Where to Find Help:
- NHS Services: Your GP can refer you to a feeding team or specialist paediatrician.
- Private Clinics: Many private clinics offer feeding assessments and therapy, often with quicker access than the NHS.
- Charities: Charities like Contact and the Feeding Matters Foundation offer support in navigating healthcare systems and connecting with the right professionals.
Dysphagia (Eating, Drinking and Swallowing Difficulties)
Red Flags for Dysphagia:
- Persistent coughing, choking, or gagging during meals.
- Refusal to eat certain textures or reluctance to drink liquids.
- A history of recurrent chest infections or aspiration pneumonia.
- Difficulties developing oral skills such as chewing.
Diagnostic Steps:
- Initial Assessment: Your GP or paediatrician should refer your child to an SLT for a thorough swallowing assessment.
- Additional Specialist Input: If necessary, an ENT specialist (Ear, Nose, and Throat) or gastroenterologist may become involved for further evaluation and diagnosis.
Where to Find Help:
- NHS Services: Speech and language therapists (SLTs) within your local NHS trust are often the first point of referral for swallowing difficulties.
- Private Clinics: Private SLT Feeding Specialists and multidisciplinary teams specialising in dysphagia can provide more immediate support.
- Resources: The Royal College of Speech and Language Therapists offers resources to help you understand dysphagia and its management. The Swallowing and Feeding Disorders Association offers resources and advice for parents supporting a child with dysphagia.
Avoidant/Restrictive Food Intake Disorder (ARFID)
What to Watch For:
- Persistent food avoidance that impacts nutritional intake.
- Extreme anxiety around eating or fear of choking or vomiting.
- A highly restrictive diet causing weight loss, nutritional deficiencies, or other health complications.
Steps to Diagnosis:
- Speak with Your GP or Paediatrician: Discuss patterns of food refusal or anxiety. ARFID often requires input from both mental health professionals and feeding specialists.
- Referral to a Specialist: Your GP may refer your child to a psychologist, dietitian, or eating disorder specialist for a comprehensive assessment.
- Multidisciplinary Care: ARFID often requires a collaborative approach with input from mental health professionals, dietitians, and feeding therapists.
Where to Find Help:
- NHS Services: Many eating disorder services within the NHS specialise in ARFID and restrictive eating disorders.
- Private Clinics: Private therapists or dietitians with experience in ARFID can offer tailored therapy and nutrition advice.
- Resources: BEAT Eating Disorders, The National Eating Disorders Association (NEDA) and Mind charities all provide specific resources for families dealing with restrictive eating challenges.
When to Seek Help
You should seek professional support if:
- Your child’s growth or nutrition appears to be compromised.
- Mealtimes are causing significant stress or behavioural issues.
- You notice signs of swallowing difficulties, such as choking or coughing.
- You’re concerned about food aversions that could lead to nutritional deficiencies.
What to Do if Your GP or Healthcare Professional Doesn’t Recognise Your Concerns
While most GPs and healthcare professionals are helpful, sometimes they may not fully recognise the severity of your child’s feeding difficulties or provide the necessary referrals.
Here’s what you can do:
- Be Persistent: If you feel your concerns are not being addressed, politely insist on a referral to a specialist such as a paediatrician, SLT, or dietitian. Request an appointment with a healthcare provider who has experience with neurodivergent children or paediatric feeding disorders.
- Seek a Second Opinion: If you’re still not receiving the support you need, consider seeking a second opinion from another GP or a private clinician with experience in feeding difficulties.
- Leverage Parent-Led Support Groups: Parent-led support groups, such as those on Facebook or through organisations like the National Autistic Society, can provide insights into how others have navigated the healthcare system. Connecting with others facing similar challenges can give you tips on what has worked for them.
- Charities and Advocacy Groups: Organisations like Contact, BEAT Eating Disorders, or The National Autistic Society can offer advice, resources, and even help with navigating healthcare systems.
Key Terms to Help You Search for Support
When seeking help for your child’s feeding difficulties, it’s important to use specific key terms to guide your search for appropriate services. For example, if you suspect Autism Spectrum Disorder (ASD), try searching for neurodevelopmental assessments or autism diagnosis clinics.
For Paediatric Feeding Disorder (PFD), you may want to search for Feeding Specialist, Feeding therapy teams, paediatric dietitians, or multidisciplinary feeding clinics.
If swallowing issues are a concern, use terms like dysphagia assessments, Speech and Language Therapy Feeding Specialist or swallowing therapy to find relevant specialists.
For ARFID, searching for eating disorder services, ARFID specialists, or restrictive eating therapy can help connect you to the right professionals.
Don’t hesitate to ask for second opinions if you feel your concerns aren’t being fully addressed. Parent-led support groups, charities, and organisations like Contact or BEAT Eating Disorders can also provide additional resources to guide you toward the appropriate support. Be persistent in your search and use these terms to help you navigate the healthcare system and find the right services for your child.
If you have any questions or would like further guidance, Laura is more than happy to answer them – please don’t hesitate to get in touch.
Conclusion
Seeking help early allows your child to receive the tailored support they need to thrive. Whether through NHS services or private clinics, understanding the right pathways and advocating for your child’s needs will make all the difference. Don’t hesitate to seek help—there is support available, and your child’s feeding journey can improve with the right intervention.
For practical strategies to try while your wait for direct support, download our comprehensive guide available here.
References for the series:
- American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Arlington: APA Publishing.
- Beat Eating Disorders. (2024). ARFID Support and Resources. Retrieved from https://www.beateatingdisorders.org.uk
- Goday, P. S., Huh, S. Y., Silverman, A., Lukens, C. T., Dodrill, P., Cohen, S. S., … & Kenney, B. (2019). Pediatric Feeding Disorder: Consensus Definition and Conceptual Framework. Journal of Pediatric Gastroenterology and Nutrition, 68(1), 124–129.
- Toomey, K. (2010). Sequential Oral Sensory (SOS) Approach to Feeding. Therapy Manual.
- National Autistic Society. (2024). Getting a Diagnosis. Retrieved from https://www.autism.org.uk
- National Autistic Society. (2024). Understanding Autism. Retrieved from https://www.autism.org.uk/.
- Rosen, R., Stenger, M. R., & Halabi, K. (2021). Dysphagia in Children: An Evidence-Based Approach. Current Gastroenterology Reports, 23(5), 18.
- World Health Organisation (WHO). (2023). International Classification of Diseases (ICD-11). Retrieved from https://www.who.int
- Satter, E. (1987). How to Get Your Kid to Eat… But Not Too Much. Palo Alto: Bull Publishing Company.
- Zimmer, M., & Sheehey, P. (2012). Sensory processing and feeding disorders in children. Journal of Pediatric Nutrition and Developmental Therapy, 45(2), 12-17.