No parent wants to label their child with a developmental condition or delay. Seeking a diagnosis can be very challening but ultimately enabling. Your goal is not the diagnosis but a better understanding of your child and how to support them. 

Address Developmental Concerns Head-On

In the beginning, it is common for parents to feel private about these developmental concerns. Addressing them head-on helps you support your child's growth and development more effectively. Dismissing or ignoring them will likely add stress to the family and compound the challenges for a child, negatively affecting their self-esteem and confidence.

Don’t Let the Details of a Few Puzzle Pieces Change Your View of the Whole Picture

In accompanying your child through various specialized assessments and evaluations, know that specialists view your child through a specific lens, and their findings do not represent your child as a whole. Their role is to look for developmental differences and exceptionalities; should they exist, they will find them.

It can be hard to hear about your child's shortcomings or delays. As a result, the prognosis can feel unfavorable. Ask each specialist about your child's strengths so as not to lose sight of them, and ensure a therapeutic plan builds upon your child's strengths and interests. Ultimately, these assessments and evaluations equip you to make evidence-based decisions for your child and become a better advocate.  

Give Yourself Time to Process

Should your child be diagnosed as neurodivergent or in need of further intervention, it is understandable for you to: 

• experience grief or a sense of loss for the child you thought you had or the life you had envisioned for your child and family,

• find unnerving parallels between your child's atypical development and your own development or familial background, and/or

• be sensitive to your child’s differences being misunderstood and your parenting capabilities being unfairly judged.

However unsettling, there should be no shame or blame for yourself, your partner, or your child. 

For our family, seeking a diagnosis helped us connect the dots for what had previously come across as strange idiosyncrasies or quirky behavior. While we were not immediately grateful for the diagnosis, it did help us access the specialized care our sons needed, along with some much-appreciated insurance coverage.

Though a Diagnosis Can Be Helpful, Your Child’s Wellbeing Is the Goal

In some circumstances, a diagnosis can take time. Sometimes there is a need to monitor a child over a prolonged period because of their immaturity or young age, or there are layers to identifying the primary issue. In some cases, a straightforward or singular diagnosis may never come. Nevertheless, you support your child with the care they need and move forward one step at a time.

Proceeding with evaluations and assessments in a balanced way is essential, so your child is not overwhelmed or receiving indirect messaging that can affect their self-esteem, as in overheard conversations about them at home, over the phone, or in clinical settings with specialists. While they can’t always understand what is being said, they can pick up signals of your distress, concern, or worry. They may have questions about this process. Answer them honestly, briefly, and at an age-appropriate level. If you are unsure, a specialist can help provide tips on what to say.  

Too often, strengths are neglected in an effort to “fix” the child and get them to conform to the expectations of others. A focus on strengths builds and reinforces your child’s confidence and self-esteem. All children benefit from consistency and a sense of security. Children with developmental differences need this even more, as they often suffer from insecurities and anxiety, even if they don’t present in the most typical or well-understood ways. This starts at home.

Prioritize and Give Things Time

There are many effective strategies to pursue in response to a child's needs for developmental scaffolding. However, most will take time to bear fruit and have a meaningful impact. It helps to plan in six-months blocks of time. Therapeutic progress reports are often in sync with this timeline as well. Be sure to ask for these progress reports, too. Pausing and reflecting on progress is helpful for therapists as well. 

Look ahead and prioritize which skills you wish for your child to develop. While focusing on closing specific gaps, it is helpful to have clear goals that enable your child to progress through important milestones. For example, “What critical skills does my child need so they can feel successful and not overwhelmed at school?” Prioritizing care is essential when there are multiple or competing needs.

Be Open and Collaborative

Though you cannot observe your child in every instance, make the best efforts you can (within your constraints) to know your child. Work closely with your intervention team. Be open and share what you see at home, school, and in the community. The similarities and differences in your child’s behavior across settings can help identify unifying threads. Some of the most significant breakthroughs in our sons' care came from our persistence in asking therapists and educators probing questions, which kept them from falling into a regular pattern or seeing them through a more fixed lens.

In Summary

• Seeking a diagnosis helps you better understand your child’s development make evidence-based decisions and may provide access to insurance coverage.

• It is okay to feel private about seeking a diagnosis until you’ve had time to process and understand what it means for your child.

• Specialists are looking for lagging skills, and it can be hard to hear about how these affect your child’s development, but remember to balance this perspective and ask for strengths, too.

• Prepare your child for evaluations in an age-appropriate way and preserve their self-esteem by keeping adult conversations out of earshot, answering their questions directly, simply, and (again) at an age-appropriate level.

• Sometimes, a diagnosis takes time or a precise diagnosis never comes. Regardless, you discover new ways to understand and support your child and stay clear of pitfalls, i.e., “fixing” them.

• Interventions take time, so prioritizing and thinking ahead in six month blocks and proactively asking for progress reports helps.

• Be a keen observer of your child across settings and form collaborative relationships with specialists, therapists, and educators.