Autistic adults and nutrition: When and how to find a registered dietitian

Many individuals with autism have food aversions and sensitivities. Additionally, gastrointestinal (GI) issues are a common co-occurring condition with autism. As such, autistic people are at risk of poor nutrition and related negative health effects. Registered Dietitians (RD) can help. Here we help explain what an RD is, when you should seek one out and how to find an autism-friendly one.

What is a Registered Dietitian?

First, Registered Dietitians (RD) or Registered Dietitian Nutrionists (RDN) are recognized medical professionals, with board certification in the field of nutrition. They have earned a degree from an accredited program, completed a supervised internship, and passed a national licensing exam. They must also participate in ongoing professional development and education to stay up to date with best practices in their field to keep their license. RDs are qualified to work in a wide variety of settings, including hospitals or outpatient health care clinics, managing food services for school districts, developing public awareness programs and even working with athletes. Health insurance often covers some care provided by RDs.

What is a nutritionist? All RDs and RDNs are nutritionists, but not all nutritionists are RDs or RDNs. Those who can only call themself a nutritionist may have completed some education related to diet or food science and may have experience counseling people about food and healthy eating habits. But they are not licensed and credentialed or recognized as medical professionals.

In some states, anyone with an interest in providing nutrition advice can advertise themselves as a nutritionist, regardless of their credentials or expertise. It’s important to make sure you are seeing a qualified provider, so be sure to check the regulations in your state and don’t be afraid to ask questions before choosing a provider.

What are some common reasons to see an RD?

You have a chronic health condition. If you have been diagnosed with a condition like diabetes, high cholesterol or high blood pressure, your doctor may recommend dietary changes as part of a treatment plan. While there is endless, often contradicting nutrition advice available online, it’s important to follow evidence-based recommendations for your specific condition. Rather than trying to figure it all out on your own, which can be overwhelming, a dietitian can help you set goals and teach you strategies that work with your food preferences and current routines.

You have a food allergy or intolerance. Food allergies and reports of food intolerances, such non-Celiac gluten sensitivity, are thought to be more common among autistic people. Since many autistic people already eat a limited range of foods, it can become difficult for those with allergies or intolerances to get all the necessary nutrients. Rather than focusing on what you can’t eat, a dietitian can help you figure out what foods and products are safe for you and offer creative suggestions to make sure you get a balanced diet that satisfies you without being too boring.

You have a known or suspected digestive condition. GI issues, such as chronic constipation or diarrhea, abdominal pain and gastroesophageal reflux are even more common in autistic people than the general population. The reasons are not fully understood, but some think it could be related to the extreme food selectivity or high levels of stress that are common in autistic people. Because GI discomfort can negatively affect sleep, mood and behavior, it is important to address these issues with a doctor. Depending on what the doctor finds, they might recommend diet changes. An RD can help you learn to avoid foods that negatively impact your health without sacrificing balanced nutrition or enjoyment.

You are experiencing highly selective or disordered eating. Autistic people frequently experience sensory aversions to tastes, odors and textures and a strong need for sameness in the foods they eat. If these issues are significant, they can make it difficult to meet your nutritional needs.

Avoidant/restrictive food intake disorder (ARFID) is a diagnosis applied to those who eat such a limited diet, they are at risk of malnutrition and medical complications. ARFID does not involve concerns about body weight or shape.

Anorexia nervosa is more common among autistic people, especially late-diagnosed women. It appears that up to 20-35% of women with anorexia nervosa meet the diagnostic criteria for autism.

Whether you are seeking treatment for an eating disorder or would like help incorporating more nutritious foods into a limited diet, a dietitian can provide nutrition advice that takes into account your individual needs and preferences. Often working as part of a team along with a doctor and therapist, they can support you in both your physical health and in establishing a healthier relationship with food.

You need practical general advice about nutrition. Nutrition is key to maintaining good long-term health, even for those without any known health conditions. There is so much information online, on social media, on store shelves. RDs are the true experts in science-backed information about nutrition and can answer questions, set goals, and make diet changes based on evidence.

Many autistic people experience challenges related to executive functioning like planning, organization, and sequencing. One of the most common ways these issues can show up is in managing one’s health and maintaining a healthy, balanced diet. For example, planning balanced meals, grocery shopping, or simply setting and sticking your goals all require you to use your executive functions. If this is a particular challenge for you, a dietitian can offer support and practical strategies.

You “always” or “never” feel hungry or thirsty. Many autistic people have challenges with interoception, or the awareness and interpretation of internal body cues and signals. This can make it hard to rely on your body to give you cues related to hunger and thirst. For some people, these cues can be dulled or intensified all the time, while others are most impacted when experiencing stress or changes in routine. If you find yourself overeating or undereating due to hunger cues that seem out of sync with your body’s needs, an RD can help you establish an eating routine that ensures you get balanced nutrition.

Your body is showing signs or symptoms that could be related to a nutritional issue. Some common health and wellness concerns may have a nutritional component or cause. For example,  abnormal results may show up on blood tests that point to a dietary issue. Other common symptoms, like frequent illness, fatigue, or injury as well as changes to your menstrual cycle can have many different causes. Poor nutrition should be one of the things your doctor considers when looking for a diagnosis. An RD can analyze your usual diet to ensure you’re getting enough macronutrients, vitamins, and minerals as well as make recommendations for changes if needed.

You want help to manage your weight. When most people think of a dietitian, weight loss is the first thing that often comes to mind, but it’s not the first item on this list for good reason. You might be surprised to know that dietitians don’t typically prioritize weight as a marker of your health. Instead, they like to focus on healthy behaviors and look at the big picture — your energy level, sleep, activity, food variety — rather than spending too much time focusing on a number on the scale.

That said, some people seek out the help of a dietitian who works with people with weight concerns. This could be someone who is experiencing weight-related health issues and has been unable to successfully resolve those issues without additional support. Others work with a dietitian while pursuing weight loss surgery or medication or because they are required to lose weight in order to have another medical procedure. If you are interested in this type of support, consider working with an RD who specializes in bariatrics.

How do I find an autism-friendly RD?

There is no specialty within the field of dietetics related to working with people with autism, so it is generally a case of finding an individual dietitian who is able to meet your specific needs. Here are a few suggestions to help you on your search:

• If you are seeking medical nutrition therapy, one way to start is by looking for a dietitian that takes your insurance, and then narrow down that list to those who work with your specific condition or concern.
• If you are able to pay out of pocket, you can see any dietitian licensed in your state. If you have a highly specific need, this makes it more likely you will find someone with experience to match.
• If you are comfortable seeing a provider via telehealth, this further expands your options.
• Search the Autism Speaks Resource Guide. 
• See if the dietitians have a website or social media presence that tells you more about their background and practice philosophy.
• Consider reaching out via email to ask further questions that might help you determine if it’s a good fit. Rather than simply asking if they have experience with autism, try to think about what accommodations or general understanding you might need. For example, you might ask if they have experience with severe texture issues. If verbal communication is a challenge for you, you might ask if they can incorporate email or text-based communication. You might want to know if they provide meal planning as part of their services.

See also: Tips for autistic adults managing diabetes

Contributor Lydia Wayman is an autistic advocate with a B.S. in education and an M.A. in English and nonfiction writing. Through her presentations, writing, and art, she uses her experience to support families and professionals by helping them understand how autistic kids see the world. She has worked at an autism resource center, mentored youth with disabilities, and spoken at Girl Scout events, parent-led groups, and conferences with her autistic peers. Her writing has appeared in magazines, books, and newspapers, and she has helped to develop several training programs and professional courses. Her work for Autism Speaks includes the Adult Autism Diagnosis Tool Kit, the Roadmap to Self-Empowerment for Autistic Adults, and articles on coping with the holidays and Social Media, among others.