Do you have advice for raising a neurodivergent child? Feminist Advice Friday
A mother hopes to be a great advocate for her neurodivergent daughter.
A reader asks…
My child is neurodivergent. We’ve known this for a while, but recently got an evaluation that confirmed the main diagnosis, as well as some other more tangential ones.
I want to be a great mom to her, but I don’t have a lot of experience with neurodivergence. I know moms often mess this up by centering their needs, or listening to the wrong experts, and I admire your progressive approach to neurodivergence, as well as the way you have spoken about raising your own children. Do you have any advice?
My answer
Neurodivergence includes a wide range of behaviors, feelings, and diagnoses. And it is inherently culturally mediated. Understanding this fact is critical to supporting your child. Being neurodivergent means that your child will experience thoughts, feelings, and behaviors that deviate from what is normative, typical, or expected in your culture. These manifest as:
Behaviors that are distinct from standard coping behaviors, and which may be troubling to your child. For example, panic attacks can be extremely troubling.
Behaviors that differ from cultural scripts, but that may not trouble your child. Not making eye contact is morally neutral, and may not affect your child’s well-being. Bystanders, however, may treat your child differently; that is their problem, not your child’s. As your child grows, you will need to prepare her for the ways in which her neutral neurodivergent behaviors may affect her relationships, and offer her the opportunity to work on mediating these effects if she desires.
Behaviors that differ from cultural norms, and which do not trouble your child, but which may annoy or irritate you, or may be objectively harmful. For example, a child who experiences anxiety about school may be perfectly happy to avoid going to school. If you cannot homeschool, these experiences may be very distressing to you. They may be objectively harmful if the authorities get involved.
Managing neurodivergence is all about separating the harmful from the neutral or beneficial. Yet too often, treatment providers focus on cultural scripts and formulaic treatment plans rather than ever assessing what a family or individual child needs. An autistic child who experiences intense anxiety at school needs a supportive environment, not to be forced to make eye contact during conversation.
Every neurodivergent person is different. Neurodivergent people are just as diverse—and arguably moreso—than neurotypical people. Knowing your daughter is neurodivergent tells us nothing about her, her needs, or her future, except for one thing: She’s going to encounter ableism, and she’s going to need support and advocacy to push back.
For this reason, I urge caution whenever anyone or anything promises that it offers “neurodivergence inclusive programming.” There’s no such thing. The only way to be fully inclusive is to be willing to make changes and accommodations based on an individual’s needs, rather than their diagnosis. What feels welcoming and accommodating to one neurodivergent person can be a nightmare to another. We are not a monolith.
Some neurodivergent people need to spend lots of time outside. For others, it’s torture. Some neurodivergent people relish independent work. Others need lots of support and oversight. The notion of neurodivergent inclusivity is often built on stereotypes about what neurodivergence is, so don’t fall for this marketing ploy. Ask about whether your child’s specific needs—all of her needs, not just the socially acceptable, common, or easy ones—can be met.
I want you to also focus on moving away from the deficit model of neurodivergence. The fact that your child does something differently does not mean she is doing something worse. There is no moral reason a person needs to make eye contact, or share the interests of other people.
For this reason, neurodivergence does not necessarily require treatment. Often, the environment is the problem rather than neurodivergence. Consider this fact as you pursue support and treatment.
Here’s an example from my own life: I literally got 100s on all of my tests and essays in college. But I was in danger of failing several classes because I was too anxious to attend. My class anxiety correlated very neatly with classes in which I had group work; group work is torture, and incredibly anxiety-inducing to me. On top of that, the urban environment in which I attended school was loud, overstimulating, and entirely too much. Many teacher forced us to talk about ourselves or answer prompts. Some even made us stand in front of the class to do so. And in almost every class I had, there was a creepy man who hit on me, or who followed me around. There were many, many mornings during which I had hours-long meltdowns as I tried to prepare myself to face another day. To an outsider, I likely appeared very low-functioning.
As an adult who controls my time and schedule, I am happy, thriving, and haven’t had a meltdown in years. I have near-total control over my environment, and have built an environment in which I can thrive. My opposition to group work makes me extremely efficient, and my rigid need to maintain a schedule means that I can accomplish an extraordinary amount of writing every day, in addition to being a good mom, good wife, and pursuing many time-consuming hobbies. To many outsiders, I don’t even seem neurodivergent. But rest assured, if I had to return to the college environment again, I would immediately begin falling apart.
Every assessment for every neurodivergent person should begin with this question: In what ways is the environment not meeting this person’s needs? But too often, we frame it the other way: How is this person failing to thrive in this environment?
I even had a therapist once tell me that I would need to learn to live with my anxiety instead of pushing back on the arbitrary expectations of an environment that felt toxic to me. Years of therapy didn’t help me learn to live with anything, but controlling my environment did.
I recommend reading Dr. Naomi Fisher, who covers this point in much more detail.
Please also spend some time thinking about your family culture. This is the set of values and practices that you take for granted and treat as normal. In my family of origin, everyone highly valued social relationships, lots of social interactions, and big gatherings. They also valued lots of time outside—but only a specific type of time outside, as dictated by the adults and on their schedule. As a child, I thought I hated the outdoors; in adulthood, I learned that I merely hated my parents’ ways of being outdoors.
Why do I ask you about family culture? Because these are the norms you will most aggressively try to shoehorn your child into. Becoming mindful of these cultural norms will reduce the likelihood that you stigmatize neutral behavior. Be mindful that your family culture must adapt to your child, not the other way around.
Your child will need to learn what they need, and must learn how to advocate for it. You must advocate for them now, to model how such advocacy is done. Your role as parent is not to change or shape or fix your child. It is to clear obstacles and offer support so that your child can become whoever they need to be. Consider asking the following questions:
What expectations do we have that are truly arbitrary, and which are vital? Does she really need to participate in kickball, answer every adult who asks her a question, or have as many friends as we think she should?
What does she say she want? Your child knows where she is struggling. Let her drive the treatment plan. Prioritize her needs. She’s the one who has to live in her body and go through the world with her neurodivergent mind.
When an environment imposes an arbitrary expectation that you cannot escape, what can you do to support your daughter? How can she adapt to the expectation without feeling like she is inferior or must change her core way of being?
What abut her current environment is not working? How can you get creative about solving these challenges? My daughter was afraid of being away from me, thanks to the trauma she experienced when her sister died. Her first school offered nothing. Her next school agreed that, if this fear was an impediment to her coming to school, the best option was for me to come with her. So I worked on my laptop, out of a kindergarten classroom, for nearly a year. My daughter now happily attends school independently because she feels safe in an environment that was willing to adapt to her needs.
Keeping in mind that every neurodivergent person is different, here are some strategies I’ve learned over the years as a neurodivergent parent to neurodivergent children:
You need great expertise. Your impulses may be wrong or harmful, and what once worked may stop. But many “experts” bring only harm. Be skeptical of anyone who stigmatizes your child, who does not let your child’s needs drive treatment, who imposes arbitrary cultural expectations on your child, or who disregards your values.
Form a strong relationship with your child’s treatment team, even if they are imperfect. They are your first line of defense when you need advocacy at school, when an authority figure objects to your parenting, or when your child needs any form of legal accommodations. Taking the time to work together and explain your thinking is absolutely worth it.
Please respect your child’s privacy. There’s nothing wrong with being neurodivergent but that is your child’s story to tell. Don’t tell others about their diagnosis or needs or struggles unless you have their permission. Remember that, even though stigma is lifting, it still exists. A public label as mentally ill or neurodivergent can be extremely damaging.
Be mindful that there is no right way for your child to feel about any particular life experience, nor any correct way to show those feelings. Meet your child where they are. If your child is uncomfortable with praise, talk to them about what feels right; don’t force praise because some parenting guru told you to.
Don’t try to change your child. Work with them to manage emotions and behaviors that make life challenging, but never force change on them.
Get your child’s consent for any treatment. It is a myth that treatment needs to be hard, or that kids won’t consent to change, or anything else. Treatment will not work if your child is not on board, but it will cause immense harm. On that point, remember that nothing—nothing—is more important than your child’s humanity and emotional well-being. All treatment, all progress, every goal must take a backseat to your child’s basic human needs and emotional safety.
Don’t punish or reward your child for things they can’t control. And really, if at all possible, avoid punishments and rewards.
Know that there is no right way to parent all neurodivergent kids, and what works great for one family may be catastrophic in yours. Pay attention to your child and their reactions above and beyond all other metrics, especially including expert advice.
Tell your child about their neurodivergence. Read books together. Make it a part of daily life. Make this something that is a part of them, not something they have. But also, don’t try to force them to feel any particular way. If your child wants to hate their neurodivergence, they’re allowed to feel that way. Similarly, follow their lead with language. If they don’t want to use identity-first language, don’t force them.
Get lots of support. Parenting is hard. Parenting a child in a world not made for them is even harder.
If you follow no other piece of advice here, though, I want you to follow this one:
Talk to your child, and ask them what they need. Eventually they will become an adult who has to chart their own course. Begin preparing them now. The purpose of support is not to make them more suitable for the world around them. It’s to help them be happier and healthier. So ask your child what she needs. Work with her to prioritize a treatment plan that centers her comfort. She is, and always will be, the expert on her own needs. Treat her as such and watch her blossom.
I'm a neurodegent mom of a neuro divergent teen (autism, ADHD) with physical and mental illnesses. Zawn has a lot of good points but it feels to me like the rules for parenting kids who are different... aren't different. Know your child. Love your child. Affirm your child. Support your child. I was a kid with a role to play in my family (scapegoat/utility child) and I refused to put that burden on my kids.
Delight in all the ways your child is uniquely themself. Be tolerant of ways they're not like you. Celebrate what makes them happy. At the end of the day, acceptance and support are so important.
Interesting side note: college was the first time I ever felt alive and seen. So much so that I'm now a professor. I assign group discussions but push back hard of graded group work as it only rewards the lazy.
I’m a neurodivergent mom married to an ND man, raising two ND kids. Our house is a neurospicy stew. We’ve had to recalibrate multiple times over the years. Two things that have made the biggest difference are working with a LICSW/parenting coach who gets ND kiddos and their needs, and low demand parenting.