What Parents Raising Neurodivergent Kids Worry About

As many of you know, I have been on both sides of the diagnostic feedback session. I’ve been the child psychologist reviewing evaluation results with parents and I’ve been the parent on the receiving end of evaluation data that confirms what I already knew was unfolding in regards to my child’s development.

As a parent, now over 15 years ago, I remember feeling overwhelmed and scared at first. As a psychologist, I’ve watched parents process the news that their child needs something different to succeed in a variety of ways; it can be such an emotional experience for some while others jump right in and embrace the journey. 

Photo by Benjamin Manley on Unsplash

Why do parents have such a range of emotions? I believe we are in the middle of a cultural shift in how we view raising neurodivergent children. Because of the stigma of disabilities when many of us were growing up in the 1980s and 1990s, we can struggle to shift our mindset from being fearful of the outcomes for our child. At the same time, we want to break down barriers to help the world understand and celebrate our awesome kids!

While we forge ahead to find the best therapists, teachers, and social opportunities to help our children feel understood and included, we still worry about outcomes. Our worries are not about what college they will go to or which sport they will excel in. We worry about much more basic things like: will my child be able to attend school without emotionally shutting down today or will we be able to find a group of peers that share his interests? 

I want you all to know that you are not alone.

Here are the most common worries I’ve heard from parents raising neurodivergent kids and teens over the last 20 years:

1. I worry they will never [fill in the blank of lagging skill]

When you took your baby to the pediatrician’s office to well-visits, you may remember being handed a piece of paper listing developmental milestones to keep an eye out for. At some point, your child’s development didn’t match up with these milestones. Some neurodivergent kids develop skills sooner than expected, like a child teaching themselves to read at age three, and some might develop later, like not being able to have a back-and-forth conversation until age six.

Maybe you researched developmental milestones on your own and began to feel uneasy when you didn’t see your child doing the same things as other kids at the park. Some parents experience denial at this stage when realizing something is different about their child’s development. Denial actually helps us process highly emotional information piece by piece. Yet, we want to avoid getting stuck in this denial space because our inaction could get in the way of getting help. If we stay in denial too long, not only will our kids not get the help they need, but we won’t be able to help them understand themselves.

Once you’ve accepted that your child is developing on their own path, it can feel freeing to radically embrace who they are. Still, the lack of knowing what comes next can overwhelm many parents. During the preschool years, parents get the most guidance because research is so clear about the strong benefits of early intervention. While getting started with therapies before age five can make a huge difference, the progress doesn’t stop there. I have seen kids continue to make progress later into their teens.

On my own parenting journey, I try to stay focused on one school year at a time. Sometimes there is a new interest to nurture or a new skill is emerging that our kid needs to practice. Staying present and following their lead has never let me down. 

The next right thing: Keep showing up for your child so you can nurture their interests and support their skills as they grow. I know the fear of the unknown gets to us at times, but the unknown path allows for exploration and also surprises us with unexpected milestones we would have taken for granted had our kid not in fact been our kid.

2. I worry that I will never learn enough to help my child.

I know it sometimes feels like you need a graduate degree in child psychology to parent your child. However, I have one of those and I will say that most of the things I learned in graduate school did not prepare me for parenting my neurodivergent child.

While I have lots of knowledge about child development, how we process stress in the brain, and how connection must heal us before correction works, this knowledge did not save me from experiencing the emotional overwhelm that came with trying to help my child.

Supporting your child while they experience the stress of transitions, sensory overwhelm, and social miss-steps is something you have to learn by doing. That's why I'm so passionate about sharing our stories with each other. Not one strategy will work for every child because not one brain is the same. 

The next right thing: If you haven’t already, read more about co-regulation and the autonomic nervous system. These articles by Dr. Mona Delahooke are a great place to start. Similar to holding space for our children when they are very young, many of our neurodivergent kids will need for us to hold space, or co-regulate, for them even when they are big kids. So many things continue to be hard for them and we often need to support them emotionally longer than we expect. Which means that YOU will need to stay on top of getting the support you need so that you have the bandwidth to support your child.

3. I worry that I will never find the right educational environment for my child.

I’m going to be honest; this one is tough. Every single state, school district, school, and even classroom support and nurture our kids in different ways. That’s a lot of variability. We have so much work to do in helping all educators understand the difference between a stress response and an intentional behavior.

We also have more work to do in supporting teachers by securing funding for more staff, new professional development opportunities, and increased collaboration with parents. Raising and teaching neurodivergent children is a team sport. We must all work together to solve problems interfering with our ability to compromise because when we don’t effectively collaborate, our children are caught in the middle with no one leading the way.

The next right thing: Understand that in order for us to learn, we must first be emotionally regulated and feel safe to take risks, make mistakes, and try again. None of us can learn in an environment where we don’t feel understood, feel on alert by the sensory overwhelm around us, or feel socially isolated.

Think about what helps your child feel emotionally regulated, connected to adults, and included in activities. Sometimes flexible environments can be developed through accommodations within an Individualized Education Plan (IEP) or 504 Plan and sometimes your child’s teacher will be able to make changes within their classroom. My hope is that we begin figuring out what all learners need to succeed, not just those who don’t fit the mold of a standardized curriculum. A great place to get started learning more about supporting all learners is to read about Universal Design for Learning (UDL).

4. I worry that my child will never have friends.

One of the first concerns for parents of neurodivergent kids is social. Sometimes neurodivergent kids will have a play interest that doesn’t align with their same-age peers or some may be so active that others find it hard to play with them. Some struggle to communicate with peers which can interfere with early play experiences.

Whatever the concern, parents tend to worry that early social concerns will lead to their child never having friends. This is not necessarily true! Many neurodivergent kids socially come into their own later in development when they are able to interact with others with shared interests. 

Some parents and teachers also worry about the child who likes to be alone on the playground. I always respond to this concern with the question: Is the child happy? If this child is happily doing their thing, it’s very possible that they are recovering from the hard work of the classroom, or that they are spending time in nature to process the sensory experiences around them. I call this social satisfaction and we all have a different bar for success.

You cannot make people socialize who do not want to socialize. Just ask an introvert. I’m only concerned if a child wants to be included and is not able to join in because they don't know how or are being actively excluded by peers who don’t understand them.

If adults are worried that the child will be made fun of for digging holes in the dirt rather than playing soccer, then we solve that problem by coaching the kids doing the teasing, not by changing the child happily digging holes.

The next right thing: Begin with protecting the mental health of your neurodivergent kid by helping them understand themselves and surrounding them with others who are kind and/or share their interests. You are on your child's path now. Just follow their lead to find their interests, their people, and their place in this world. If you can’t find it, then create it!

5. I worry that my child will never be independent. 

So, we don’t have a crystal ball. That’s why this concern comes up for parents in the first place and why I recommend trying to stay focused on one year at a time. For many of us, the truth is that we cannot answer this question until our children get closer to adolescence and young adulthood.

Building independence is like putting tiny marbles in a giant jar that takes 20 years to fill up. Each marble is a skill and you never know when you’re going to find the next marble. Just stay present and keep noticing.

It’s also important to remember that starting school at 5 years old and graduating from high school at 18 years old are arbitrary deadlines made up to help organize our education system. There is flexibility in these timeframes and we should lean into it. When we disregard our child’s developmental timeline and push them into situations based on chronological age that are too stressful or not nurturing enough, we miss the mark.

The next right thing: Stay focused on what your child is working on today and as soon as they are ready, begin stepping back one skill at a time. If you need some tips on how to talk to your child about their differences, watch this free workshop on talking to kids about their neurodivergence.

I know the unknown path of this parenting journey creates anxiety. I will also say that this path is full of hope and surprises. We have to let go of what we thought our plan was for our child. It’s not our path. It’s their path and we have the privilege of helping them find their way. 

Let’s Stay Connected!

~Dr. Emily

P.S. Tell us something in the comments that you used to worry about that ended up being ok!

I’m Dr. Emily, child psychologist and former school psychologist, and I’m on a mission to help parents and teachers be the best adults we can be for the neurodivergent kids and teens in our lives. This isn’t about changing the kids, it’s about changing us. Learn more with my resources for parents, teachers, and schools at www.learnwithdremily.com.

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