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Building Your Autism Healthcare Team

  • Getting Started

Whether you’re brand new to this journey or you’ve been walking this path for years, having the right healthcare team makes all the difference. Your loved one with autism may have unique medical needs, sensory sensitivities, or communication styles that need special understanding. From experience, finding the right providers may take some searching, but amazing professionals are out there. This guide is to help you build this team with the providers to support your family’s unique needs.

What Makes a Great Autism Healthcare Provider

Before we dive into the types of specialists, here are some things to look for in any provider:

  • They have real experience with autism: Not just a mention on their website, but actual training and regular work with autistic individuals. They should be able to give examples and understand common challenges.
  • They use approaches backed by research: They can explain why they recommend certain treatments or tests, ensuring their recommendations are grounded in current research.
  • They work well with your family’s other providers: They’re willing to talk to therapists, teachers, and other specialists, fostering a collaborative approach.
  • They adapt their communication style: They’re patient, flexible, and willing to meet your loved one where they are, understanding their sensory or language needs.
  • They take your insurance: Because surprise medical bills are the last thing any family needs. Always verify coverage beforehand.
  • They are compassionate and respectful: They should make you and your loved one feel comfortable and welcome, valuing your input and concerns.
  • They focus on optimizing health and managing symptoms: Be cautious of any practitioner who promises “cures” or quick fixes for autism. The goal should be improving comfort, health, and function.

Your Healthcare Team: The Essential Players

Diagnostic & Developmental Experts

  • Developmental Pediatricians: These doctors are often your “quarterback” – they specialize in how children grow and develop, and they understand autism inside and out. They can give or are usually involved in diagnosis and can help coordinate care with other specialists.
    • What they do: Initial autism evaluations, ongoing medical management, medication oversight, and connecting you with other specialists you might need. They often can do the diagnosis or refer you to who can.
    • When to see them: If you’re seeking a diagnosis, need help managing medications, or want someone to oversee your child’s overall medical care.
    • How to find them: Ask your pediatrician for a referral, or search online for something like: “developmental pediatrician autism [your city/state].

Holistic & Integrative Practitioners

  • Integrative Medicine Doctors: These providers blend traditional medicine with complementary approaches like nutrition, supplements, and lifestyle changes. They often take more time during appointments and look at the whole person.
    • What they do: Address gut health, nutritional deficiencies, sleep issues, and sensory sensitivities using both conventional and alternative approaches.
    • When to consider them: If your loved one has ongoing digestive issues, sleep problems, or if you’re interested in exploring nutrition and supplement options.
    • How to find them: Search for things like “integrative medicine autism [your city/state]” or “holistic doctor autism [your city/state].” You can also search for specific specialists addressing specific areas as described later in this article.
  • Functional Medicine Providers: Similar to integrative doctors, but they focus heavily on finding the root cause of health issues through specialized testing. They often look at things like food sensitivities, nutrient levels, and hormone balance.
  • How to find them: Search for things like “functional medicine autism [your city/state]”.

Medical Specialists for Common Co-occurring Conditions

  • Gastroenterologists (GI Doctors): Many people with autism experience digestive issues like constipation, diarrhea, or food sensitivities. Pediatric GI doctors who understand autism can be incredibly helpful.
    • What they do: Address chronic constipation, reflux, food sensitivities, and other digestive problems common in autism.
    • When to see them: Ongoing digestive issues, feeding difficulties, or if your loved one has frequent stomach pain.
  • Pediatric Neurologists: These specialists focus on the brain and nervous system. They’re important if there are concerns about seizures, movement issues, or other neurological symptoms. It’s important to note that their role can vary by state; for example, some families receive their child’s autism diagnosis from a neurologist and have regular follow-up visits with them, just as other families do with a developmental pediatrician.
  • What they do: Evaluate and treat seizures, movement disorders, headaches, and other brain-related concerns.
  • When you might need them: If you notice seizure-like activity, significant motor difficulties, or recurring neurological symptoms.
  • How to find them: Request referrals from your doctor or search “pediatric neurologist autism [your city/state]”.
  • Registered Dietitians (with autism experience): Feeding and nutrition challenges are common in autism. A dietitian who understands sensory issues and autism can be a game-changer.
    • What they do: Address picky eating, nutritional deficiencies, feeding therapy, and meal planning for sensory-sensitive eaters.
    • When to see them: Severe food selectivity, nutritional concerns, or feeding difficulties.

Sensory & Specialty Care

  • Pediatric Dentists (autism-friendly): Dental care can be challenging due to sensory sensitivities. Look for dentists who specialize in special needs or have experience with autism.
    • What makes them different: They often allow longer appointments, use sensory- friendly techniques, and may offer sedation options when needed.
  • Feeding Therapists (often OTs or SLPs): Many children with autism experience challenges with eating, textures, or a very limited diet. Feeding therapists specialize in addressing these complex issues.
    • What they do: Work on expanding food variety, managing sensory sensitivities around food, improving oral motor skills, and making mealtimes less stressful. They often work collaboratively with dietitians.
    • When to see them: If your loved one has extreme picky eating, struggles with texture aversions, gags easily, or mealtimes are consistently stressful battles.
    • How to find them: Ask your pediatrician or developmental pediatrician for a referral, or search for things like “pediatric feeding therapy autism [your city/state].” They are often occupational therapists (OTs) or speech-language pathologists (SLPs) with specialized training.
  • Ophthalmologists/Optometrists (autism-experienced): Vision issues are more common in autism, and regular eye exams can be challenging due to sensory sensitivities.
    • Special considerations: They understand sensory sensitivities during exams and can detect vision issues that might affect learning and behavior.

Finding the Right Providers: Action Plan

Step 1: Start with Referrals

  • Ask your current doctors, therapists, and school team.
  • Connect with local autism support groups (autism parent groups are usually very helpful).
  • Check with your state’s autism society or disability resource center.

Step 2: Use Online Resources

  • Professional association directories (search “[specialist type] association directory”).
  • Your insurance company’s provider search tool.
  • Autism-specific resource websites and forums.

Step 3: Do Your Homework

  • Check their websites for mentions of autism
  • Read reviews from other parents. Remember every child is unique; focus on consistent patterns.
  • Verify insurance coverage before scheduling.

Step 4: Test the Waters

  • Many providers offer brief “meet and greet” calls or consultations.
  • Ask about their experience with autism during scheduling.
  • Trust your gut – if something doesn’t feel right, keep looking.

Geographic Considerations: Making It Work Wherever You Are

  • In Urban Areas: You’ll likely have more specialist options. Consider travel time and parking when choosing providers. Don’t assume closer is always better – sometimes traveling a bit further for the right fit is worth it.
  • In Rural Areas: You may need to travel further for specialists. Ask about telehealth options – many providers now offer virtual appointments. Consider staying overnight for appointments if travel is significant. Connect with other rural families online for provider recommendations.
  • Telehealth Options: Can be good for follow-up appointments, therapy sessions, and consultations. Ask about this option, especially if travel is challenging. 

Practical Tools to Make This Easier

Create a Medical Passport

This is helpful and important. Create a simple document that includes:

  • Your loved one’s diagnoses and medical history.
  • Current medications and dosages.
  • Communication preferences (verbal, nonverbal, AAC, sign language or gestures).
  • Sensory sensitivities (loud noises, bright lights, certain textures).
  • What helps them feel calm and comfortable.
  • Any triggers or things to avoid.
  • Emergency contact information.

Tip: Update this regularly and bring copies to every new provider. It saves time and helps providers understand your loved one from the start.

Keep a Provider Contact Sheet

List all your providers with:

  • Name and specialty.
  • Phone number and address.
  • What they help with.
  • When you last saw them.
  • Notes about what works well with this provider.

Document Everything

  • Keep a simple log of symptoms, behaviors, or concerns.
  • Take photos of rashes, injuries, or anything visual.
  • Note what medications or treatments help (or don’t).

This information is gold when you’re trying to figure out patterns or explain concerns.

Real Parent Story: How Sarah Built Her Team

Sarah’s 7-year-old son Alex was diagnosed with autism at age 3. Here’s how she gradually built his healthcare team:

  • Starting out: Sarah began with their pediatrician, who referred them to a developmental pediatrician for diagnosis and initial management.
  • Addressing health issues: As Alex grew, he started experiencing unexplainable “zoning out” episodes. Concerned, Sarah consulted the developmental pediatrician, who recommended adding a pediatric neurologist to the team to investigate potential seizure activity.
  • Finding the right fit: It took three tries to find the right neurologist. The first was too dismissive of their concerns, the second didn’t seem to understand how seizures might present differently in autistic children, but the third was perfect – patient, knowledgeable, and collaborative. They successfully identified a type of seizure and started Alex on a treatment plan, which significantly improved his focus and well-being.
  • Expanding support: Alex also developed chronic constipation, so they later added a pediatric GI doctor to the team. This doctor worked closely with a registered dietitian to address both the constipation and Alex’s very limited diet.
  • The result: Now Alex has a team of five providers who all communicate with each other and truly understand his needs. Sarah feels confident and supported, and Alex is thriving.
  • Sarah’s advice: “Don’t settle for providers who make you feel rushed or dismissed. Keep looking until you find people who really get your child. It’s worth the effort.”

Red Flags: When to Keep Looking

  • The provider dismisses your concerns or makes you feel like you’re overreacting.
  • They promise “cures” or quick fixes for autism.
  • They don’t seem to have real experience with autism (can’t give examples, don’t understand common challenges).
  • They won’t communicate with your other providers.
  • They make you or your loved one feel uncomfortable or unwelcome.
  • They push expensive treatments not covered by insurance without clear explanations.

Insurance and Cost Considerations Before You Schedule:

  • Always verify the provider is covered by your insurance.
  • Ask about co-pays and deductibles.
  • Find out if you need referrals for specialist visits.
  • Check if treatments they commonly recommend are covered.

If You’re Paying Out of Pocket:

  • Ask about sliding scale fees or payment plans.
  • Some providers offer package deals for multiple visits.
  • Check if your Health Savings Account (HSA) or Flexible Spending Account (FSA) can be used.
  • Keep all receipts – some expenses may be tax deductible.

Fighting Insurance Battles:

  • Keep detailed records of all communications.
  • Don’t take the first “no” as final – appeals often work.
  • Ask providers’ offices for help – they often know how to word requests for better approval chances.
  • Consider working with a patient advocate if you’re hitting roadblocks; these professionals help you navigate healthcare, understand your rights, and resolve issues, often found through patient advocacy organizations or online directories.

Building Your Team Over Time

Remember, you don’t need to find everyone at once! Most families start with one or two providers and add others as needs arise.

Final Thoughts

Building a healthcare team can present challenges at times, it is important to  remember – you’re not just looking for providers, you’re building relationships with people who will support your family for years to come. Take your time, trust your instincts, and don’t be afraid to make changes if something isn’t working.

Every family’s team looks different. What matters is finding providers who understand your loved one, respect your family’s values, and work collaboratively toward your goals.

You are your loved one’s best advocate. You know them better than anyone, and your insights are valuable. Don’t be afraid to speak up, ask questions, and keep looking until you find the right fit.

Medical Disclaimer: This information is for educational purposes only and should never replace professional medical advice. Every child with autism is unique, and what works for one family may not be appropriate for another. Always consult with qualified healthcare providers before starting any new treatment, supplement, or dietary change. Some interventions mentioned here are experimental or carry significant risks—your child’s safety must always come first

See next blog in this series: Mastering Insurance Navigation for Autism Services