When you have concerns about your child’s development and your pediatrician suggests an autism evaluation, where do you go next? Do you seek out a neurologist or a pediatric psychologist? Do you contact your school district? Who exactly can perform an evaluation and who can provide an autism diagnosis?
Most parents have no experience in this realm and the process can be difficult to navigate as requirements often differ based upon your insurance, says Jamie McGillivary, President and Founder of Healing Haven, an ABA therapy center for children and teens in Madison Heights.
“The whole process can be overwhelming and confusing,” she says, adding that parents’ strong emotions surrounding a possible autism diagnosis can make what feels like a lot of red tape even more painful.
As a Board Certified Behavior Analyst with decades of experience helping families get the support they need, McGillivary has witnessed parents’ frustration when they’re in that gap between navigating the process of the diagnosis and actually receiving therapeutic services.
But there is a path for families to follow to get to that end goal of getting answers, receiving a diagnosis, securing insurance authorization for services and helping their child build upon their strengths, though it may not feel straightforward at all.
A surprising next step
Your child’s pediatrician may share generic information about an appropriate next step to gain an evaluation for your child, which may, unfortunately, send you down the wrong path if it doesn’t align with your insurance requirements.
While it may seem illogical, even surprising, the first call a family should make — even before consulting a neurologist or seeking an autism diagnosis — is to their health insurance company. This is a pivotal time for parents to try to learn the requirements of their insurance to ensure they get proper coverage, McGillivary says.
“While an autism evaluation is most often required to get insurance coverage, each insurer plays by a different set of rules for that requirement,” she explains.
While ABA therapy services are evidence-based and the most recommended treatment for individuals on the autism spectrum, they are costly and insurance companies do play a role in determining evaluation requirements.
“Most insurance companies require a formal diagnosis of autism, which may mean your child will have to go through a formal process for testing. Go to your insurance company and ask what they require,” McGillivary says. “Really clarify and double check both who can perform the testing and what tests are required. Get the name of the person you talk with.”
Under some circumstances, an evaluation will need to be conducted at an approved autism evaluation center (AAEC), of which there are a handful in the state of Michigan. AAECs provide a comprehensive evaluation with a multidisciplinary team.
While these centers generate comprehensive evaluations, they often have waiting lists that can be quite long. If this is indeed a requirement for your insurance company, ask them about the option to receive a bridge evaluation. This process, which is offered by Healing Haven, typically involves an evaluation with a psychologist outside of the AAEC, but will often allow families to start therapy services while they wait on an AAEC waiting list.
Once you determine what your insurance provider needs to see, ask them directly to share with you a list of in-network providers who can evaluate your child for services.
Support before, during and after the autism diagnosis
Know that frustration is typically a part of this whole process, so give yourself some grace and self-care to maintain a clear head and open heart.
“Frustration is normal, absolutely, so have a support system. Reach out to someone who has gone through this, from navigating the bureaucracy to dealing with the grief,” McGillivary suggests. “I try to stress to parents as they prepare for this that whatever it says on the piece of paper, your child is the same child as before they went into that office. You will love them regardless. You just have more information now about how their brain works, and how to best support them.”
Reach out to Autism Alliance of Michigan and make use of the personal navigators who can talk with you, hear your concerns and put you in touch with providers and other families who have walked this path. Seek online groups and people in your local community, too.
“You might be surprised that there are people living the same reality right next to you, but you’d never know until you talk with each other,” McGillivary says.
Try to gain as much information from your child’s evaluation — and any assessment by your ABA provider — as possible. “Most evaluations come with a list of recommendations to what the next steps should be,” she suggests. “The idea behind the evaluation is not just to verify a diagnosis and turn on your insurance, but to give you a better understanding of your child’s profile of strengths and weaknesses and concerns to inform their treatment.”
Yes, this process is painful. “It’s laying out what you feel are your child’s worst attributes and that’s painful for a parent, but good providers can help you find the strengths in addition to the weaknesses. It’s so important to create a profile and look at both, because both sides inform your child’s treatment. We use these profiles to figure out how to really individualize your child’s curriculum.”
Despite the emotions, information is your friend and a strong support system will help you navigate the bumps along the way.
“Parents often think that receiving a diagnosis for their child is the end of their life as they knew it, but it’s not,” McGillivary says. “This may not be the journey you planned for, but there will still be beauty in it. You will love your child regardless, and you may find out that they will teach you a lot more than you teach them.”
Expertise provided by Healing Haven. Learn more about Healing Haven’s unique ABA therapy programs for children and teens, ages 2-young adult. Visit thehealinghaven.net.
