For any number of reasons, you may find yourself on a long waiting list for a child’s psychological evaluation. It can be extremely frustrating to be caught in a period of forced inaction when you know how important diagnosis and early intervention are for your child! If you are a parent who wants to do more while you are waiting, there are a few things you can do to make the most of your time.

  1. Keep doing what is working for your child!

Sometimes the prospect of a new diagnosis or the uncertainty of going through the assessment process can make you doubt everything. You know your child best, and in this time of waiting, you should continue to do the things that work for you and your family. If your child is attending daycare and that is working well, continue doing that! If you are doing play groups or trips to the park and your child loves it, there is no need to stop those things. Raising a child is a marathon, not a sprint, so remember this and pace yourself. Continue to use age-appropriate behavior management—all children respond best to consistency, high expectations, and warmth. Keep reading to your child, playing with your child, and talking to your child daily.

  1. Seek out support and resources online.

There are many great websites online that can give you valuable information about potential diagnoses and treatment. Here are a few good ones:

  • Autism Speaks This organization has lots of information to help families, including a 100 Day Kit to help families get through the first steps of an autism diagnosis.
  • Autism Source, Autism Society of America (ASA) ASA’s Autism Source is a database of resources in local communities. It includes contact information for local supports and information, including a short course for families.
  • Autism NOW This website is a combined effort from The Arc and The Administration on Developmental Disabilities. It has many autism resources and information for individuals with Autism Spectrum Disorders (ASD) and other developmental disabilities.
  • Life Journey Through Autism Series, Organization for Autism Research (OAR) This website has lots of resources, including ebooks that can be downloaded for free.
  • Baby Navigator This website provides resources and tools for families of young children. It is connected to Autism Navigator, which includes free and paid resources for families.

Keep in mind that there are reputable and disreputable resources with regards to diagnosis and treatments. Don’t go into a rabbit hole—a psychologist is going to want to know what your experience is, not what you can repeat from a website. There are many programs and treatments out there, but you should discuss these with the psychologist prior to investing your time or money.

  1. Seek out Local Supports and Resources

While some types of treatment require a specific diagnosis (typically intensive, autism-specific treatments such as ABA or floortime), other sources of support or treatments do not. If your child is struggling, you can start the process for many supports and services while you are waiting for an official diagnosis. If your child is under age 3, contact your state’s early intervention program. Each state has a program to identify and provide treatment for children ages 0-3 with developmental delays, which can include speech therapy, occupational therapy, physical therapy, behavioral therapy, and developmental therapy. These programs often do their own assessment of a child’s functioning and are completely free for the family. Some provide autism evaluations, and some do not. Providers may come to your home for treatment, or they may go to a child’s preschool or daycare. These programs can have a wait list, so it is a good idea to reach out as soon as possible.

If your child is 3 or older, they are covered by your local school system and may be eligible for special education services, including specialized preschool, speech therapy, or social skills classes. Depending on your state and your local school district, there may be specific magnet schools with enhanced services for children with special needs. Schools do their own testing to assess for need, and it is slightly different than the testing you receive from a clinical provider—they are assessing for need in an educational setting, and typically do not give a medical diagnosis (which is usually required by insurance companies for more intense types of private therapies). Request an evaluation (in writing, both over email and through snail mail) by sending a request to the principal of your local school and the local school psychologist. Schools are mandated to follow specific timelines to respond to your request and complete testing, but it is a good idea to have things in writing to ensure that they are complying with their legal responsibility. This is another step which requires waiting, so doing this ASAP is very important! Do you know others who have gone through the same process? Parents who have already navigated the system in your area could be great resources to help you know what is available.  Some of the websites listed above have local chapters of parent groups, but sometimes informal relationships can be just as helpful.

If behavior is a major concern and you need help now, many ABA providers will provide parent training sessions or classes (typically private pay without a diagnosis). Sometimes 1-2 sessions can make a world of difference and give you some tools to feel more confident in your parenting skills, so this might be worth considering. Additionally, Parent Child Interaction Therapy (PCIT) is a family-friendly parent-coaching model of therapy that can be helpful in managing difficult and disruptive behavior in children ages 1 to 7 years old. This type of therapy does not require an initial diagnosis of autism to begin, and it has been proven to work well with kids with and without autism.

  1. Consider the costs of being on a long wait list—and consider a private-pay evaluation.

For children with developmental delays and autism spectrum disorder, getting early intervention started as early as possible is the ultimate goal. Studies looking at the effectiveness of early intervention programs have found that the returns on these programs are huge. Each dollar spent on early intervention is worth between 4 and 12 dollars later.* The best outcomes are for children ages 0-3, followed by programming for children ages 4-5, and the returns decrease as children get older.  The numbers vary based on the study and their methodology, but regardless of how magnified each dollar is worth later on, the value of early intervention has been repeatedly confirmed.

While the costs of programming can vary, consider what this means for the time spent on services. If each hour—each therapy session—is worth 4-12 hours of therapy later on, think of the advantage you are giving your child by starting it earlier. It is not uncommon for young children with autism to be prescribed 25-40 hours per week of ABA therapy. At approximately 100-160 hours per month, you can easily calculate how much opportunity for benefit your child is missing each month you are on a wait list. A 6-month waiting list would mean the potential loss of 600-960 hours of early intervention during this critical window, which in our rough comparison, equates to 2,400 to 11,520 hours of therapy later!

Of course, some children who are evaluated for autism do not have autism—an evaluation may reveal another diagnosis which would also qualify a child for early intervention services. In other cases, a child may be typical and not need any additional services. In those cases, gaining that peace of mind—having one thing off your plate, one less thing to worry about over the next year—might be worth pursuing a private-pay evaluation.

Testing clinics at large hospitals and state organizations often rely on grants and state and federal funding, and can be overwhelmed by the sheer number of evaluations they complete each year. While these centers often have good and knowledgeable clinicians, many of them are training centers, and sometimes there is a high likelihood that you will be seen by a student or postdoc rather than someone with a significant amount of experience in the field. In these cases, the evaluation is supervised by a clinician, but the entire process (from the appointment itself to receiving the final report) can take more time due to the back and forth supervision process. Inquire about the process if you are on a wait list—is the first appointment the only appointment? Or will you then have to wait for another appointment, and then have to wait more for the results? In some cases, an initial 6-month wait can turn into almost a year before you get through the process. So what are you supposed to do?

If you want the best possible outcome for your child, it makes sense to start intervention services as soon as you can. If you are able to private pay for early intervention therapy, you can often do that without a diagnosis. If you are looking at the recommended 25 hours per week of services, it will likely cost at least $1,000 per month for those services. Alternatively, you may consider a private pay evaluation, which would subsequently enable you to use insurance benefits for therapy. Psychologists who do not contract with insurance companies tend to have much shorter—or no—waitlists, and many can provide the same services you would receive in a larger clinic, with the benefits of more individualized treatment and a quicker turnaround on the entire process. Being out of network means you will pay more upfront for these services, but it might be surprising how comparable the overall costs can be.

Usually, people want to be able to use their insurance benefits and that makes sense—you pay for coverage, and it should be able to help you out when you need medical care. The problem is, without a diagnosis, you can’t use your insurance for early intervention programs. In some ways, paying to get a private evaluation actually allows you to use your insurance much sooner, to greater benefit your child. If you have ever had a surgery, had a baby in a hospital, or budgeted for some other large medical procedure and planned ahead using your healthcare plan, health reimbursement account, and deductible estimates, you know that using your insurance coverage does not mean that you are not paying anything out-of-pocket. Sometimes the overall expense can be a shock when you get the bill later. When looking at the cost for a psychological evaluation, it can seem that private pay evaluations are much more expensive because they require payment upfront. However, often the cost can be comparable when you look at the big picture—especially when you consider that pre-tax dollars set aside for medical expenses in your Health Saving Account can be used for psychological evaluations, and detailed receipts called superbills can be submitted to the insurance company for out of network benefits, which often means they reimburse you a portion of the services.

If you choose to learn more about private pay psychological evaluations, you should look at a few options. Not all psychologists are alike—each has their area of expertise and specialty, and you should find someone who is comfortable assessing for autism in young children. Dr. Jessica Myszak has had over 10 years of experience evaluating young children with autism. She has recently transitioned into offering telehealth evaluations, which are safe and effective to evaluate young children for autism spectrum disorder. She is passionate about being able to help families navigate this difficult time, and being able to give them the information and direction they need to move in a positive direction. She is able to work with families who reside in Arizona, Colorado, Delaware, Georgia, Illinois, Missouri, Nebraska, New Hampshire, Nevada, Oklahoma, Tennessee, Texas, Utah, Pennsylvania, Virginia (effective 1/1/2021), and North Carolina (effective 3/1/2021).

If you are interested in learning more about potentially working with her, you can visit her website here or email her here to get the process started. Dr. Myszak has been featured in information articles in a number of publications, including Healthline, Romper, Family Education, Ladders, The Week, and Verywell Health, *For more information on the returns of early intervention, see these links: