The journey to an autism diagnosis often involves significant wait times that can leave families feeling frustrated and uncertain. Families who have concerns that their child may have autism are often required to wait several months to over a year to get a formal evaluation appointment with a specialist. These long waitlists exist for a few reasons:

• A shortage of qualified specialists: Developmental behavioral pediatricians are the most common diagnostic specialists for kids with autism, and there are only about 30 in New Jersey. This shortage is similar, or worse, throughout the country.
• The comprehensive and time-intensive nature of the evaluation: Diagnosticians will typically take 1-2 hours with a child and their family, and that does not include the additional time to read their medical history and other evaluations, analyze assessments, and write a detailed report.
• Increased awareness and demand: With a national prevalence of 1 in 31 children, it’s easy to see why there are long waits as more families with young children are seeking evaluations.

While a formal autism diagnosis is needed to access many autism interventions, there are proactive steps families can take during this extended waiting period. Though the wait may feel discouraging, families can take comfort in knowing they are already laying the foundation for their child’s success, diagnosis or not. And while waiting is tough, it doesn’t mean parents must put their child’s growth and development on hold—there are many ways to advocate, prepare, and provide support in the meantime.

• Access services that do not require a formal diagnosis:
  • For children under three with developmental delays, every state offers early intervention services, regardless of diagnosis. While most pediatricians will refer families when there are concerns, a referral is not needed; families should reach out directly to their local agency to request a developmental assessment to see if their child qualifies. The CDC offers contact information for every state here.
  • For children three and older, families should reach out to their local school district’s child study team. A formal medical diagnosis of autism is not required to request an evaluation if a child’s developmental concerns interfere with their ability to learn and access educational settings.

• Explore ways to speed up the process. Calling to check for cancellations can be time-consuming but can result in an earlier appointment, especially if a family has the ability to change their schedule. If a family can pay privately, providers who are out-of-network often have shorter waiting lists, and looking for providers outside the local area can be helpful if a family is able to travel. Finally, Totalis Behavioral Health is happy to help families get connected to telehealth evaluations, which typically have much shorter waiting times.

• Use the waiting time to prepare for the appointment. Gathering medical records, taking videos of behaviors of concern, making notes of developmental milestones, and talking to others in the child’s life such as teachers can all be helpful. Autism New Jersey has a great list of things families can do get ready for autism diagnostic appointments.

• The early signs and symptoms of autism may make it challenging for families to play and communicate with their toddler. The typical ways of parenting and teaching may not be working for families, leaving them feeling frustrated and uncertain. Paying attention to developmental milestones, and spending time focusing on critical skills such as joint attention, imitation, and communicating wants and needs are important. Here are some great tips on how to promote skill development.

Parents who are eager to begin ABA therapy may be discouraged to realize that insurance companies require a formal diagnosis to cover this medically necessary treatment. And typical ABA therapy is often 20-40 hours per week, making costs out of reach for most.

Totalis Behavioral Health understands this difficulty for families and developed a unique “While You Wait” private pay consultation package. It is consultation with an experienced master’s level clinician who will provide an in-depth assessment that identifies developmental concerns and weekly one-on-one therapy sessions to address specific goals and promote critical skill development. Consultation also includes ongoing individualized parent training sessions designed to equip families with the tools and strategies they need to support their child’s growth effectively. This program aims to empower families during the waiting period, ensure access to quality resources, and provide empathetic and high-quality clinical guidance as they navigate this important journey.

Families shouldn’t have to wait for access to autism diagnoses, and there is a great of focus and advocacy occurring about this issue. In the meantime, families should feel empowered knowing there are things they can do to support their child’s needs.

Just a reminder: Suggestions outlined in this blog are not individual-specific. Always connect with your child’s healthcare and educational providers before implementing any new programming.