What Should We Do While Waiting for an Autism Diagnosis?

Mar 06, 2024

ASD Healthcare

While you may notice signs of autism in your child, it can be hard to get an appointment for autism diagnostic testing quickly. In Georgia, some waitlists can be up to 18 months long, and research shows that autism therapies are most effective when started as soon as possible. It can be incredibly frustrating to feel like you’re just sitting around and waiting for an appointment, but there are many things you can do in the meantime.

Get on Every Waitlist Possible

While it may seem overkill to contact multiple clinics, it is the best way to ensure your child can get an appointment as soon as possible. Some parents may feel that it is dishonest to do this, but clinics actually expect you to be researching all of your options and may even be able to recommend other clinics with shorter waiting times in your area.

There is the added benefit that a lot of waitlists require in-depth paperwork processing. While annoying, it gets the repetitive administrative tasks out of the way so that when it’s time for your child to begin treatment there is no delay while waiting for paperwork to be completed.

As a note however, after your child has been tested, please make sure that you cancel any appointments you made at other clinics. Letting those clinics know that you won’t be using your appointment allows them to fill those spots with other children waiting to be tested.

Look into Additional Therapies

For ABA (applied behavior analysis) services to be covered by insurance, a child must have an official autism diagnosis as well as a referral from a physician. However, there are other types of therapies that don’t require the autism diagnosis and can still be covered by insurance under the guidance of your pediatrician. Many children who do ABA therapy also benefit from speech therapy, feeding therapy, occupational therapy, and physical therapy, which can all be started before ABA or the official autism diagnosis.

Some clinics offer private classes or sessions for parents of children with autism that don’t require that the child enroll in services at the clinic. This could be a great way of learning more about what additional treatments might benefit your child. As one option, research has shown that Parent-Child Interaction Therapy (PCIT), can help autistic children (ages 1 to 7 years old) by teaching parents methods for modifying challenging behaviors independently.

Develop Your Misinformation Detector

If you’re reading this article, it means you’re off to a good start on your autism research! However, finding high quality information on autism can be difficult. If you search for “autism,” Google will return tens of thousands of search results. While some of those results are responsibly written and use scientifically valid sources, others are not. There is no shortage of autism conspiracy theories, unproven cure-alls, and bad medical information online. While reading about other people’s experiences with autism online can be informative, remember the old(ish) axiom: don’t believe everything you read on the internet. Even people who post about autism with good intentions can be misinformed, and other people deliberately spread bad information about autism.

To make sure that you are using information that is medically accurate to make decisions for yourself or for your family member, familiarize yourself with high quality sources of information. For some ideas, Medline Plus is managed by the National Institutes of Health. Universities and hospitals generally offer scientifically-vetted information. And, the Autism ToolKit (what you are reading right now!) draws on scientific literature to teach people about autism. As a general rule, if a source of information says something about autism that doesn’t pass your smell test, check to see if they cite any scientific literature. Or, if you read something that you are unsure about, use the “Contact Us” button in the upper right portion of this page to send it to the admin team for the Autism ToolKit! We are happy to answer any and all questions you might have about autism.

Reach Out to Your Community

Sitting around and waiting for a diagnosis can be stressful – especially if you are also trying to parent a child with behavioral issues. It can help to know that, no matter what stage you are at in the diagnosis process, you are not alone. Many autism groups offer both online and in-person support groups, and finding people who know what you are going through can help. These support groups can help you discover new coping mechanisms for your child and give you a place to vent your feelings. To find support that works for you, please visit our “Events Calendar.”

Stay Organized

As your child moves from test to test and specialist to specialist, it can be difficult to stay on top of all of the details. To make your life easier as your child starts different therapies and schools, you may want to develop a system for keeping track of medical results and therapists that you have been in contact with.

When you reach out to different therapists and specialists, we suggest keeping their contact information and information about their wait times and services in one place. That way, if you need to reach out to them for any reason (to check on wait times, make or cancel appointments, etc . . .) you won’t have to start searching from the ground up.
Keep all the records from any preliminary appointments made with psychologists, pediatricians, therapists, or any other professional that is helping you on your journey towards diagnosis. The more information, the better!
It can also be helpful to keep a running list of behaviors that you observe in your child. Many autism therapies involve targeting problem behaviors, so keeping track of what your child struggles with can help therapists develop a plan for your child.

Develop Immediate Strategies

Of course, very little of this addresses exactly what to do with a child showing signs of autism while you wait for a diagnosis. Often, what brings parents to seek diagnosis are problem behaviors such as melt-downs or other signs of frustration a child may show. For some ideas:

Experiment with different age-appropriate ways to communicate with your child. Having a working method of communication can make daily living less frustrating for both you and your child.
If your child frequently has meltdowns or often seems over-whelmed, it may help to establish daily routines and/or give your child a way to track time throughout the day (like a visual timer). These strategies help your child understand when things happen and can help your child anticipate them.

Waiting for an appointment while caring for a child that you suspect has Autism Spectrum Disorder can be intimidating, there are plenty of actions you can take to make sure your child receives the best care possible as soon as possible. Don’t forget to trust your instincts as a parent and that this is still the same child. While there will be ups and downs, don’t allow the stress of the situation interfere with helping your child grow into a happy and healthy individual, and enjoy yourself as much as you can.

Article by: Jessica Thompson and The Autism ToolKit