Parenting can be just a long series of waiting and worrying, from the beginning: waiting to conceive a child, waiting 9 months for the birth, waiting until age 1 to worry less about SIDS and unlocked baby gates, and then 18 more years to a lifetime after that. One wait in particular that can be difficult is the time between the first moment you wonder if your child may have autism spectrum disorder (ASD) and the moment you get an official diagnosis (or not). You may worry about the quality of life you imagined for them not coming to fruition, or you may struggle to find a health care provider who is listening and supporting you thoroughly. We are here to remove the mystery of why it takes so long to get a diagnosis, and what you can do in the meantime.
What’s with the long wait?
2 years. That’s how long Dr. Mike Wright, Chief Clinical Officer and Cofounder of Ascend, says it typically takes most families to receive an official ASD diagnosis. Parents may start to wonder if their child is displaying ASD symptoms between their first and second birthdays, but the average diagnosis happens around 4 years old.
This wait consists of a few steps that just don’t happen very quickly sometimes. First, pediatricians are in most cases supposed to administer the M-CHAT (the Modified CHecklist for Autism in Toddlers) as early as 16 months old, but in some cases a bit later. This is often the first tool in helping medical professionals recognize a child’s development may not be progressing normally. If the doctor doesn’t administer this test, or doesn’t take the results seriously, there can be a delay. Dr. Wright also says that some pediatricians take a “wait and see” approach, which can also add time.
The second issue is the “go-around” parents sometimes experience when they are trying to find the right type of specialist. A pediatrician may refer patients to a psychologist who doesn’t actually diagnose. “There may not be a lot of people who are trained in providing that specific diagnosis. Not every psychologist is trained in diagnosing autism, so that’s where you get into that wait…it might take a long time.”
A third concern that adds to wait time is the waiting list once you do find a provider who will diagnose and treat ASD. Some parents are shocked to find that after they do decide to call a local children’s hospital for an appointment, there can be a 6-9 month waiting list, sometimes up to a year, Dr. Wright explains. At Ascend, he says the typical wait is 2-3 months after getting the referral for treatment. Therefore, some families are waiting over a year in total from when their pediatrician refers them to a specialist to when they are beginning treatment.
How can I help my child now?
Luckily, there is a solid option for your child to make progress during that waiting period, whether they end up actually having ASD or not. Wright says parents need to find their state’s early intervention program often called “early start” for children under age 3. “These services are for kids who have a language delay, or a motor delay, and someone comes out to your house for about an hour per week to help get your child on a developmental track. Most children with autism, the first thing that’s noticed is a delay in language, and they can work on that if you get authorized for the service,” he said. The other benefit of getting started with a program like this is that the therapists have ties in the community to help recommend resources along the way through your child’s potential diagnosis and future treatment. These resources can prove invaluable for parents struggling with where to turn next.
Other ways to help your child at home is to encourage language development. Wright gives the example of a child with a speech struggle trying to ask for juice. They may say “ju-ju-ju” but not actually complete the word. He encourages parents to neither give them the juice right away, but rather to let them attempt to communicate correctly, but also to not withhold the juice because they can’t say the full word. This will provide language learning opportunities at home while you wait. In addition, engaging in one on one play with the child to increase their engagement with you can help.
How can I deal with the anxiety of waiting?
First, Wright said parents need to avoid the internet, especially non-evidence-based information. One resource he recommends is Autism Navigator, and parents can also look to local nonprofits for trustworthy facts.
Another point of comfort for parents during the wait is in the fact that early intervention is the best thing you can be doing for your child, so you are already on the right track by having reached out to a specialist.
“Kids who are getting intervention before three are well within the window where they will be able to do right by their kid. Some parents may hold off because they don’t want bad news, but more information is always better. Some parents who worry about their kid being on the spectrum actually aren’t, and then they are relieved,” Wright said. He said for those who do receive the ASD diagnosis, it “opens up a world” where those 30-40 hours per week of treatment versus one per week is “life-changing” stuff for your child. Children with ASD who receive early intervention often have good outcomes and live a very “typical” life.