Introduction

Tick, tock, tick, tock. Is that the relentless sound of the clock, or just the rhythmic drumming of your fingers as you navigate the waiting game for an autism evaluation for your child? The wait for an autism evaluation can be daunting, often stretching for months, or in some cases, even years. On average, families may find themselves waiting anywhere from six months to over a year for a definitive evaluation. This prolonged period can be a time of uncertainty, filled with more questions than answers.

But here at Sensational Inclusion, we believe in turning this waiting period into an empowering journey. What if we told you that this wait time isn’t just a frustrating pause in your life? What if, instead, it’s the perfect opportunity to start embracing and celebrating your uniquely wonderful, possibly-autistic child, right now? Yes, even before any formal diagnosis is made. This is a time to explore, understand, and champion your child’s neurodiversity, embracing their individuality in all its forms.

So, buckle up and read on to pick up some strategies on ways to support and celebrate your child’s neurodiversity – with or without a diagnosis. The waiting time doesn’t have to be a time of stagnation; it can be a period rich with discovery, understanding, and joy in the uniqueness of your child. Let’s embark on this journey together, transforming the wait into a time of active, joyful advocacy for your child’s beautiful neurodiverse mind.

Start Your Advocacy Engines

A formal diagnosis isn’t a prerequisite for embracing and accommodating your child’s unique needs. Imagine transforming your living room into a sanctuary of serenity with dimmed lights and noise-canceling headphones to ease sensory overload. Celebrate their unique interests, be it trains, dinosaurs, or even the fascinating world of vacuum cleaners. Embrace these interests as gateways to their world, not distractions to be sidelined.

When designing environments for your child, it’s about crafting spaces that respect and nurture their neurology. This might include gently guiding Aunt Jane to understand that her booming laughter, while endearing, can be overwhelming for your child. It’s not about dampening Aunt Jane’s spirit, but rather about advocating for an environment where your child feels secure and respected. It’s a delicate balance between respecting others and asserting what’s necessary for your child’s well-being. Remember, it’s not about personal preferences; it’s about creating a space where your child can thrive.

Embarking on this journey of advocacy might also mean reevaluating social engagements. It’s okay to decline invitations to events that might be sensory overload nightmares for your child. This is about prioritizing their comfort and well-being over social conventions. It’s about setting boundaries that honor your child’s needs. 

And here’s a crucial piece of information: Your child doesn’t need an Individualized Education Program (IEP) to receive accommodations at school. Use this time to start advocating now. Educators and schools can, and should, be responsive to your child’s needs simply because it’s the right thing to do. It’s a matter of disability justice, ensuring that every child has access to an inclusive, supportive learning environment that respects their neurodiversity. As a parent or caregiver, you have the power to advocate for these changes, to demand a learning environment that doesn’t just tolerate, but actively celebrates your child’s unique way of experiencing the world.

Check Mis-Information/Ableism and The “Well-Intended”

Ah, the well-intentioned but often misinformed comments you’ll encounter: “But your child can’t be autistic; they’re so bright!” or “Look, they made a friend – they must be okay!” These moments call for a dash of wit and a sprinkle of education. Respond with a light-hearted, “Oh, Karen, I didn’t realize you moonlighted as a neurologist!” Humor can be a powerful tool, serving as both a shield and a way to engage in meaningful dialogue. It cuts through the stereotypes and gently corrects misconceptions.

Remember, though, you’re not obligated to be an autism encyclopedia to every curious passerby. Supporting your child is your primary focus, and that’s more than enough. However, if you feel up to it, these interactions can be opportunities for advocacy. A kind but firm response can help dismantle stigmas and challenge ableist language. It’s about striking a balance between educating others and preserving your energy for what really matters – nurturing and advocating for your child is always #1.

The Power of Community: Find Your Peeps

You’re definitely not navigating this journey in isolation. Picture this: a vibrant, diverse community, a veritable community of families, caregivers, and educators, all linked by their experience with neurodivergent children. This network, both locally and online, is a treasure trove of support, empathy, and understanding. Whether it’s through local support groups, dynamic online forums, or engaging social media platforms, there’s a space where your stories and challenges will be met with nods of understanding and words of encouragement.

In these communities, you’ll find a wealth of shared experiences. Picture a mom from across the country, posting about her son’s latest fascination with ceiling fans, or a dad sharing a breakthrough moment when his daughter communicated her needs clearly for the first time. These stories aren’t just anecdotes; they’re lifelines, reminders that your experience is shared by many.

But it’s not just anecdotal; the data backs this up. Studies have shown that as many as 80% of families with a neurodivergent member greatly benefit from joining support groups or online communities. These networks provide not just emotional support but also practical advice, ranging from coping strategies to navigating educational and medical systems. The exchange of tips and resources can be a game-changer, often leading to improved outcomes for the children.

And don’t be surprised if these connections lead to profound friendships. It’s not uncommon for parents to forge lasting bonds over shared experiences, like understanding the unique joys and challenges of raising a neurodivergent child. These friendships often transcend the initial reason for connection, offering a sense of belonging and mutual support that is invaluable.

Remember, in these groups, you’re not just another member; you’re part of a collective voice advocating for change and acceptance in society. Together, you’re stronger, armed with the collective wisdom, experiences, and the sheer determination to ensure that the world is a more accommodating place for your neurodivergent warriors. So, dive in, share your story, listen to others, and watch as this network becomes an integral part of your journey.

Pack a Bag!

When the big day arrives, and your child is scheduled for their evaluation, think back to the days when you were prepping for the hospital to welcome them into the world. It’s time to pack a bag again, but this time, it’s for a different kind of milestone. In your trusty bag, don’t forget to include snacks, fidget toys, and headphones. While some evaluations happen in cozy, sensory-friendly spaces, many take place in pediatric offices – notorious for being sensory overload central. The glaring lights, the cacophony of sounds, the hustle and bustle of the corridors can be overwhelming.

This day is all about your child, and their comfort is paramount. Remember how they felt secure during their challenging moments? Let’s recreate that environment. Pack anything and everything that might offer sensory relief or a sense of familiarity. Does your child have a special blanket they cling to? Make sure it’s in the bag. Only eat cold dino nuggets? Bring them along. Sensory sensitivities? Don’t forget the headphones, the weighted vest, and any other comfort items. Even if you doubt they’ll need something, bring it just in case. The goal is to keep your child as regulated and comfortable as possible during this evaluation.

And let’s not forget about you – the rock behind this entire operation. Make sure you’re taken care of too. Prep your coffee maker the night before, bring a bottle of water, and pack an extra snack for yourself. Include something small that helps keep you calm – maybe it’s a book, a stress ball, or a playlist of your favorite songs. Remember, evaluation day is significant for you too, so it’s essential to plan for your comfort and regulation as well. By preparing both yourself and your child, you’re setting the stage for a day that is as smooth and successful as possible.

Conclusion: 10 Tips from Sensational Inclusion on “Playing in the Pivot” During the Evaluation Wait

Playing in the Pivot” in the context of awaiting an autism evaluation for your child is a dynamic and proactive approach to the waiting period. The term ‘pivot’ typically refers to a central point on which something turns or balances. In this scenario, it symbolizes the crucial moment of waiting and uncertainty families face between suspecting their child may be neurodivergent and receiving a formal diagnosis.

“Playing” in this pivot phase means actively engaging in this interim period rather than passively waiting. It’s about embracing this time as an opportunity for positive action, learning, and growth. Instead of viewing the wait as a stagnant or lost time, “Playing in the Pivot” transforms it into a period rich with potential.

Here are 10 Tips from us at Sensational Inclusion on transforming your waiting period into a playful, supportive journey for your child. Let’s cultivate moments filled with discovery, learning, and joy.

• Embrace Your Child’s Interests: Whether it’s trains, animals, or anything under the sun, dive deep into your child’s passions. Create themed play activities around these interests to foster a joyful learning environment.
• Create a Sensory Play Space: Set up a corner of your home with sensory play items like playdough, water beads, or a mini-trampoline. This not only stimulates their senses but also provides a fun way to explore and learn.
• Incorporate Routine Play Times: Children thrive on routine. Establish a daily playtime where your child can look forward to engaging in their favorite activities. This consistency can be reassuring during uncertain times.
• Outdoor Adventures: Nature is a fantastic playground. Plan regular outdoor activities, like a walk in the park, to stimulate their senses with natural sights, sounds, and textures.
• Storytelling and Role Play: Encourage imaginative play through storytelling or role-playing. This can be a fun way to develop social and communication skills in a relaxed setting.
• Art and Craft Therapy: Art is a wonderful way for children to express themselves. Stock up on art supplies and let their creativity flow. It’s not about the end product, but the joy and learning in the process.
• Music and Movement: Integrate music into your daily routine. Dance parties, playing with musical instruments, or simply listening to different types of music can be both therapeutic and fun.
• Tech Time: If your child is interested in technology, there are numerous educational apps and games that can be both entertaining and educational. Use tech time as an opportunity for interactive learning.
• Sensory-Friendly Cooking: Involve your child in cooking or baking simple recipes. This can be a delightful sensory experience and a chance to learn practical life skills.
• Quiet Time Activities: Not all play needs to be high energy. Quiet activities like puzzles, reading, or building with blocks are equally important. They offer a peaceful way to play and learn.

The Importance of Play

Remember, the path to an autism evaluation is more than just a waiting game. It’s an opportunity for discovery, advocacy, and yes, a good dose of laughter. Play is a powerful tool in this journey, helping to celebrate every aspect of your child’s unique personality and abilities. Whether your child is neurodivergent or neurotypical, they are incredible just as they are. So, let’s make the most of this waiting period by embracing the power of play, celebrating every quirk, every interest, and every unique trait that makes your child wonderfully them.

Final Thoughts

As we approach the conclusion of our discussion, it’s vital to acknowledge that the wait for an autism evaluation is more than just a mere countdown. This period represents a significant chapter in your child’s life story, brimming with opportunities for growth, joy, and empowerment for both you and your child. It’s a time that, when navigated thoughtfully, can yield invaluable experiences and learning moments.

As parents and caregivers, your role transcends beyond the boundaries of waiting. It’s about actively engaging in your child’s world, nurturing their unique qualities, and celebrating their individuality. By wholeheartedly embracing their interests, fostering a playful environment, and standing as their advocate, you transform the waiting period into a meaningful and constructive experience. This proactive approach does more than make the wait bearable; it lays a robust foundation for their future, rooted in understanding and acceptance.

It’s essential to remember that each child’s journey is distinct, and so are their modes of play and learning. The strategies and tips we’ve shared are not merely pastimes to fill the time. They are vital building blocks in creating a world that is more understanding, accepting, and inclusive of your child’s unique needs and abilities. Through playful engagement, strong advocacy, and shared laughter, you’re not just helping your child to thrive during the wait; you’re shaping how they view and interact with the world around them.

In essence, this period of waiting for an autism evaluation can be transformed into a joyous journey of discovery and learning. By choosing to navigate this time with positivity and proactive engagement, you’re not only supporting your child’s development but also celebrating and embracing the beautiful tapestry of their individual journey. Let’s continue to build a world where every child, in their uniqueness, is understood, valued, and empowered to reach their fullest potential