The Ultimate Guide to Navigating Your Child’s Neurodiversity Diagnosis
Here’s what I say to the families I work with who are navigating a neurodiverse diagnosis for their child: the diagnosis does not change the individual.
Your child is still the unique, beautiful individual they always were. Only now, they also have a word that describes their brain. A word that can come with a whole lot of feelings for parents: confusion, overwhelm, sadness, and maybe even relief that you finally have a diagnosis that will help you get the help your child needs. It’s a lot.
I was certainly in an emotional storm when my son was first diagnosed with autism. Despite growing up with a brother with Down syndrome and having over a decade of experience working with special needs children, I still struggled with the diagnosis.
My son was born with sensorineural hearing loss, so he was already receiving services like speech and occupational therapy, and had regular visits to an audiologist. We knew that he had fallen behind on some milestones and did not play in the same way as his peers. But he did not have all the markers for autism (he had great eye contact, for instance), and we thought these setbacks could be explained by his hearing loss.
My very first thought was:
“The diagnosis must be wrong. There’s got to be another explanation”.
After the initial shock wore off, I turned to my husband and close colleagues to consider our options: get a second opinion, ask for a reevaluation, examine the evaluation tools that were used.
Turned out, what I really needed was time. Time to move through the grieving process (I’d already started with denial and bargaining). Time to let go of my preconceived ideas of what my son’s life would be like. Time to process the diagnosis and look at my son and our family picture through a different lens.
If you’re at the beginning of navigating your child’s neurodiversity diagnosis, I want to help you work through some of the big questions that may be on your mind:
How do I explain my child’s neurodiversity diagnosis to them?
Should I tell anyone about my child’s neurodiversity diagnosis?
How do I talk to my other children, my extended family, and my friends about my child’s neurodiversity diagnosis?
I’m exploring these common questions and others below with the aim of giving you some tools and support as you move through this time. That said, every family and individual is unique. These ideas may not resonate with you and I don’t believe in telling you exactly what to do. Take what feels good and leave the rest behind.
In this article:
How should you explain your child’s new neurodiversity diagnosis to them?
Should you tell anyone about your child’s neurodiversity diagnosis?
How should you talk to your other children about their sibling’s neurodiversity diagnosis?
How should you talk to your family about your child’s neurodiversity diagnosis?
How should you talk to your friends about your child’s neurodiversity diagnosis?
5 Tips to Help You Process Your Child’s Neurodiversity Diagnosis
What diagnoses fall under neurodiversity?
You may notice that I’m using the term “neurodiversity” to describe a diagnosis of autism. Here’s why:
Neurodiverse is a word used to talk about differences in the way people’s brains work. In the last two decades, there has been a shift towards using this word as a way to advocate for people with autism, ADHD, and other conditions. This move helps us look at these diagnoses as differences instead of deficits.
Some of the more common conditions that fall under neurodiversity are:
Autism Spectrum Disorder (including what used to known as Asperger’s Syndrome)
This is, by no means, an exhaustive list. Some people identify as neurodivergent because of other mental health conditions. Ultimately, some diagnoses may be managed with treatment, but being neurodivergent is not “curable” because it simply refers to a person’s brain working differently.
Is neurodiversity a disability?
Neurodivergence is not a disability. The word “disability” suggests a person who is without a particular ability. Whereas “neurodivergent” indicates that certain brains work differently than others.
Neurodivergence describes a very diverse group of people with a variety of conditions and needs. More importantly, it acknowledges that those differences are not just disadvantages; they can also help certain individuals excel in some areas of their lives.
Neurodiversity attempts to celebrate the diverse way our brains work.
How should you explain your child’s new neurodiversity diagnosis to them?
How to explain your child’s new (or new-to-them) neurodiversity diagnosis to them is a difficult question for many parents. I get it. You want to make sure you’re doing it “right” and not causing your child more stress.
Ultimately, this is a question that can only be answered on a case-by-case basis. There are several factors to consider: age, cognitive understanding, maturity, and above all, their safety. You know your child, and you will determine the best way help them learn, understand, and process their diagnosis.
I also like to approach this question through a different perspective. Consider that the actual diagnosis may not be the most important thing to your child. It’s not always about the diagnosis. It’s often about identity,
So much of our childhood is about figuring out who we are and forming our identities. A child’s neurodiversity diagnosis is an important part of this.
Often these conversations with young children can begin by describing the characteristics, not the diagnosis itself. For a child with ADHD, for instance, you might talk to them about having a brain that works better when multiple steps are listed out. This helps them understand themselves better, releases potential shame, and enables them to say to others, “I have trouble remembering lots of steps so it’s helpful when I write things down.”
My son, Sean, recently asked me out of the blue, “Did I have my ears when I was a baby?” He wears hearing aids, which we call his “ears.” He asked me with confidence, while we were in line buying sandwiches, without any embarrassment. When I told him that he got his first pair of hearing aids just before his four-month birthday, his eyes got big and he said, “Whoa! That’s a long time, right?!”
This story is an example of how our kids may show curiosity about themselves. As with all things, the best thing we can do is meet them where they are, with language and context they will understand.
As we ruminate over how to share our child’s diagnosis with them, we will likely come up with lots of scenarios. Many of which will never actually happen. Remember, the information doesn’t have to be given all at once. In fact, it likely won’t be. Start by sharing language in your daily interactions so that when you’re ready to have a bigger conversation with your children, they will be more likely to understand. These conversations will be ongoing and happen little by little over time.
Why tell them?
You may be asking yourself, “Why should I tell my child about their diagnosis? Why introduce the idea of their difference to them?”
The fact is your child, and their peers, are likely already noticing your child’s differences. Noticing these differences without the context of a diagnosis can be isolating. Understanding why they have certain behaviors can be a relief.
Better still, as they begin to identify as neurodiverse, they can also connect with other people (from peers to celebrities) who have similar diagnoses. Seeing how other people have used their strengths and challenges can help them make sense of their own.
Neurodiverse people of all ages deserve the same dignity as everyone else. Helping your child understand their diagnosis is a way to advocate for their own self-determination.
When should you tell them?
This, again, is a very personal decision. There is no “right” age to begin the conversation.
One way to consider when to tell your child about their neurodiverse diagnosis is to ask these questions:
Are they asking questions about themselves?
Are they trying to communicate about their differences?
Are they talking about specific challenges that can be connected to their diagnosis?
Attaching the conversations about their neurodiversity to their specific questions and the things going on in their life can be an especially good way to help them understand.
I also find that using language in general conversations prior to disclosing their diagnosis can help create a sense of normalcy when those talks finally do happen.
If they are, for instance, struggling to remember things you ask them, help them frame that challenge like this: “It’s hard for you to remember for long periods of time because your brain works differently.” As you say this to them, you are giving them the tools and permission to say this for themselves.
Think of words and ideas you can share that can act as a stairway from where they are now to a full understanding of their diagnosis. If you help them take it one step at a time, the next level won’t feel like such a different place.
Who should tell them?
There is, again, no one right answer to this question. You know your child best and will know if this should be a family conversation, a one-on-one talk, and/or if a trusted professional should be present.
Consider who helps your child feel safe. Who are their favorite people? Their cheerleaders?
One thing to know: whoever talks to your child about their neurodiverse diagnosis may not be the person they choose to have further conversations with right away. The next mention might be to their peers at school, a therapist, or person standing behind you at the grocery store.
Regardless of who has that initial conversation with them, keep yourself open to continued conversations over the weeks, months, and years. As your child develops and grows and has new experiences, they will also have more questions. Let your child know that you are there to help them navigate it all.
Where should you tell them?
When deciding where to tell your child about their neurodiverse diagnosis, think about it from their perspective. Where do they feel safe? Where would they be most comfortable taking in this information? Where is a place free from distractions that will help them stay focused and calm?
Remember: you can’t put the genie back in the bottle. You may have been planning this conversation for months or years, but they are downloading a lot of information in a small amount of time. Their reaction may let out a lot of emotions. Are you in a safe environment for this to happen?
Your role in this moment is not just to give them information. It’s to hold space for their big feelings.
Above all, remember this:
You may have thought through a number of things you want to tell your child about their diagnosis. But, the details of the diagnosis are not the most important parts. This conversation will be the first of many and is more about them beginning to get the language that will help them build their identity.
Remember that you may have had months or even years to process their diagnosis, and they may also need months or years to really understand the information you’re sharing.
Your job is to help them maintain their dignity. When you talk to them like a person worthy of respect, they learn to respect themselves. Use person-first language and allow for as many questions as they have.
Consider exploring their diagnosis with them via unconventional tools like visual aids, celebrity’s stories, art, and other social stories.
It’s ok if you don’t have all the answers. Your love and support are more important than anything else in these moments.
Should you tell anyone about your child’s neurodiversity diagnosis?
Working with families and alongside other professionals I have heard so many different answers to this question. Each person is taking into consideration the specifics of the neurodiverse person, their culture, and their family specifics.
When my husband and I are deciding who we are going to share our son’s diagnosis with, we consider how it is relevant to his relationship with that person and his safety.
Sean’s hearing aids are something everyone can see, so it’s been less about deciding IF we are going to tell people, and more about HOW we are going to share Sean’s diagnosis. We’ve chosen to share openly about his hearing loss and invite friends, family, teachers, and others in our community to ask questions. We make a point of letting people know we are an open book and that we are a safe space to be curious.
We ultimately chose a similar approach with Sean’s autism diagnosis, but for slightly different reasons. His autism does not have obvious, visible markers. So, we share his diagnosis with parents of his friends, teachers, and activity instructors so that they can understand how to best teach, interact, and play with him.
We also think a lot of his safety when considering disclosing his diagnosis. When you just look at him there’s no way you would know that he is going to climb, run off, or start talking to strangers. By sharing his needs with the adults in his life, there is a better understanding of how to keep him safe.
How should you talk to your other children about their sibling’s neurodiversity diagnosis?
How you talk to your other children about their sibling’s neurodiversity diagnosis will depend on age, comprehension, and maturity. It will likely be very similar to how you approach the topic with your neurodiverse child.
The same rules apply:
Use the conversation as a way to explain specific behaviors.
Talk about the diagnosis being just one part of the person, not the whole person.
Share how neurodiversity is simply a way to describe the many different ways our brains work.
Explain that every person has their strengths and challenges. Use specific examples from your family to give context.
Come back to the central idea that not all neurodiverse people are the same. One person with autism is not the same as another person with autism.
Growing up as a sibling to a neurodiverse brother had a huge impact on me and has made me especially concerned with ensuring neurotypical siblings get the focus and attention they need to thrive. If you’re parenting neurodiverse and neurotypical children, check out my free guide on “What a Neurotypical Sibling Wants You to Know.” In it, I share some key factors to keep in mind and offer action steps you can implement to stay connected to your neurotypical children.
How should you talk to your family about your child’s neurodiversity diagnosis?
This will, of course, depend on your relationship with your family and so many other factors. For me, I needed some time to process alone. Some space to wonder and worry if all the dreams I had for my child would come true. Taking time to navigate some of the grieving process on my own was an important part of my experience. I had to put on my own mask before putting on anyone else’s.
Once I was ready, my husband and I choose the times we felt were right and told only a few people at a time. This was our way to practice sharing the news and take the journey step by step.
Allow your family members to ask questions and be prepared for unexpected reactions. They will be at the beginning of processing this information and may need time to let go of their old dreams for your child to make room for new ones.
How should you talk to your friends about your child’s neurodiversity diagnosis?
Sharing my son’s diagnosis with my friends was a bit different for me than it will likely be for most people. As a professional in the field of neurodiversity, I was able to talk to a colleague who was also a close friend. Looking back, I realie now that I choose them to tell first because I knew they would understand the road ahead. We had a common clinical language and experiences that allowed me to share without having to define all of the parts of my son’s diagnosis.
I was lucky. If you have someone in your life who has walked this path or works in this field, reach out to them for support. I know this is not always the case. In fact, for many people, they will be learning about neurodiversity as they go. You may feel like you have to have it all figured out and have all the answers before you talk to your friends and family. I would encourage you to travel this road together. Invite your community to walk alongside you in your learning process.
5 Tips to Help You Process Your Child’s Neurodiversity Diagnosis
Everything about this process is a journey. You’ll learn as you go, you’ll find your people, you’ll make mistakes, and you’ll grow. While everyone’s path looks different, there are some things I wish every parent like us knew. Here are my top tips for processing your child’s neurodiverse diagnosis.
Processing is a process. You will not “process” your child’s diagnosis overnight. It takes the time it takes, and that looks different for everyone. You will move through the stages of grief in your own way. While these traditional stages usually relate to death, they also apply to loss. In the case of parents like us, this often means the loss of our “dream” vision for our child. So many of us have set ideas about what our children’s lives will look like. The fact is, we never really know. Just because our child has a particular diagnosis doesn’t mean they won’t do things like get a job, go to college, get married, have kids, etc. It just may not look like we imagined.
This perspective was ingrained in me as a child because of the way my parents navigated my brother’s Down Syndrome diagnosis. Their dreams about having a “healthy baby boy” changed in a matter of moments, and in the moments that followed a new version of his future was born. Your steps towards acceptance and peace may not look like anyone else’s. Give yourself permission to do this in your own time.
Stay connected with your child. Through all the fear and grief and surprises and overwhelm, remember that what your child needs most is the same as any other child: connection to you. Don’t let your emotions disconnect you from them. Take care of yourself so that you can show up for your child and go through this experience by their side. Never loose site of the joy you and your child can find together.
Understand what the diagnosis means. This is a not a quick process. Your understanding will grow over time. Keep putting one foot in front of the other. Educate yourself. Ask questions. Access resources. Seek out help. Balance all of your learning with trusting your gut. Make the decisions that you feel are right for your family.
Don’t try to go it alone. If I have one bit of advice that I know is good for every parent of neurodiverse children, it’s this: Find your community. Lean on the people who get it. The people who love you and support you. They say it takes a village to raise a child, and diagnosis like these are when that really rings true. We parents are only as strong as our support system.
Don’t give up on yourself. There will be times when you feel flooded with information and overwhelmed by all the choices you have to make. Take a breath and remember that you are your child’s best and most passionate advocate. You know them best. Trust your instincts.
I am still in the process of navigating my son Sean’s two diagnoses. His hearing loss is something we’ve been helping him understand from the beginning. In part because it’s a condition that has a tangible intervention. He can hold his hearing aids in his hand and can clearly experience the difference between using them and not using them. His early experience with this diagnosis meant that my husband and I had to jump in and help him adjust….and adjust quickly alongside him.
Our family’s path with Sean’s autism diagnosis has been different. It remains uncharted. While he is too young to full process what being autistic means, our friends and family have been learning and processing over time. My husband and I are preparing for a disclosure conversation that will happen with Sean when the time is right, but we also know that we don’t need to wait to begin the dialogue. We can use language in everyday life now to celebrate what makes Sean who he is and not isolate him for what makes him different.
Navigating your child’s neurodiversity diagnosis is a long, nuanced journey. Give yourself time to learn and process and stand by your child as they do the same.
