Navigating an Autism Diagnosis

Navigating an Autism Diagnosis

By the time most children receive an autism spectrum disorder (ASD) diagnosis, they have run the gauntlet of therapy, interventions, and evaluations. For parents, the emotional load can be overwhelming, making it hard to sort through available options and how to move forward.

Oftentimes, the best thing parents can immediately do is nothing. This is the advice given by Katie Towsley, an early intervention specialist and board-certified behavior analyst, who has worked with countless families grappling with this new reality.

“Sit with the initial diagnosis for at least a week,” Towsley suggests to parents. “Let it sink in while keeping in mind that the diagnosis doesn’t change who your child is.”

Once parents have had a chance to absorb the news, they can then do the work of finding what support their family needs. Because autism varies so widely, each family needs to create their own path, however there are some general guidelines to help everyone navigate.

Towsley recommends beginning by clarifying specific needs. “Start making a list of priorities, resources, and concerns. These three things should be your key areas of focus when building your intervention task list. Parents know their child and family’s needs best. Start there and advocate for getting services that target those priorities first.”

Once parents have a clearer picture of their needs, the next step is sorting through the vast array of therapy, services, and options. Towsley advises families to keep focused on their own specifics.

“Hone in on your personal priority that is going to bring a positive change to your quality of life,” Towsley says. “I often ask clients or parents, ‘what is worth doing?’ or, ‘so what?’ What is the change going to be if you start a therapy or service? Is that service going to bring a positive change, and bring happiness? We all need to feel reinforced to keep motivated. Things like handwriting and labeling environmental items should be secondary to behaviors such as joint attention, and functional communication.” 

When it comes to assembling a team of therapists and providers, parents should be on the lookout for several green flags that will help build a long-lasting partnership.

Alexandra Melchiorre, a post-doctoral fellow in clinical psychology at KidsLink Neurobehavioral Center, says one major green flag is a provider focused on the child as an individual, recognizing their strengths and interests and who “includes the child in communication, whether they are verbal or not. Seeing them as an individual is so important.”

Another green flag is someone who understands the child’s needs exist within the needs and abilities of their entire family.  She recommends finding someone who “provides recommendations that are specific to the settings your child will be in and frequently checks in with you about the feasibility of the plan. It is difficult to see behavior change if the plan is too complex or does not take into account family variables.”

This communication and collaboration is also vital as parents work with school support teams. Towsley, who has worked in school-settings for over a decade, stresses the importance of clear-cut goals and objectives.

“Keeping an open dialogue and transparency with your school team is crucial for success, consistency, skill generalization, and maintaining rapport. If the child is on an IEP or other type of education plan, having parents clearly understand what that plan entails, how it is being implemented and monitored for effectiveness would be great starting points,” she says. “This way it stays objective when problem solving and advocating for change.”

Outside of therapy, there’s a whole host of resources available to families. While the internet and social media can be incredibly helpful, they can also be inundated with bias and misinformation. Parents should always know who they are taking advice from, and what makes that individual qualified to give it.

“I would suggest using caution with internet sites or social media and check credentials of those disseminating information,” Towsley says. “Instead, lean more on the recommendations of medical and certified professionals.”

These recommendations are echoed by Melchiorre. She points to a few specific organizations doing great work. 

“Milestones and Autism Speaks are very reliable sources,” she says. “Autism Speaks has a 100 Days Kit that really helps families navigate the immediate next steps. I also appreciate their resources for grandparents and other caregivers in the child’s life. Autism Society of America has wonderful local chapters- Autism Society of Greater Akron and Autism Society of Cleveland.”

Melchiorre also points out that other parents are a wealth of support and information. “Talk with other parents,  network. Even we get some of the best recommendations from parents. Join support groups…read what other families’ experiences are.”

As parents move through the early stages of an ASD diagnosis, the most important thing to remember is their child is who they always were. Use the ASD diagnosis as a tool to help support a child, not a label to describe them. 

Melchiorre hopes parents understand that, “regardless of a diagnosis it will not change how much you love and cherish your child. A diagnosis doesn’t change who your child is. Look for and celebrate their unique attributes.”

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