RE: My Kid is Neurodivergent
The sharing and receiving of insights about loved ones
This post is a part of the Neurodivergent Notes series. This is for all, not just those who are neurodivergent or love someone who is. We need all of the stories, we need it now more than ever.
RE: My kid is neurodivergent
Hi!
Hope all is well. Can’t wait to see everyone for the family reunion. We are writing this email to tell you that our kid is neurodivergent!
Love,
Kathryn and Fam
Sharing new insights
The process of having a child identified as neurodivergent takes time, effort, and money and is anything but straightforward. There are often many twists and turns. The fact is that many will not arrive at a tidy diagnosis with a clear path forward. And when you do get information of some form, what do you do with it? How do you navigate sharing this knowledge with those close to you and your kids? When you are the loved one receiving this information how can you react in a supportive way? These are questions I know well. I have lived them and I have been asked them by others. There is not a straightforward answer because every family is unique. There will be different constraints, relationships, and obstacles to navigate.
I wanted to think about the above questions with other people who have been there so I reached out to
of , and of . They generously shared their personal and professional wisdom on this topic.Remember it’s messy and there isn’t a right way. We are all doing the best that we can, so if you read something here and realize you have done the opposite, that’s okay.
The when, the who, and the why?
Before we dive into guidance, I want to note that it is important to identify a few things first. This article is based on a big assumption to explicitly name. The focus of the guidance below is for when families have information they willingly want to share and the sharing is in the interest of the child. This can be a tricky line to walk, we certainly do not want to reinforce the idea that there is anything to be ashamed of with a child’s neurodivergence. There is not. But, you should not feel that you have to divulge any information you or your child is not ready to share. You also do not need to share everything—some related concerns or struggles can remain private. You should certainly not share with family members or friends if the interaction has potential for harm. Families and friendships are complicated.
It is worth asking yourself why you want to share this with someone and how much you want to share ahead of time. Chances are that you want your loved ones to know something important about your child or support your child’s relationship with those individuals. Navigating these types of disclosures will be different with older children and teens. They will need to have autonomy in the situation and a say in what and how information is shared.
It’s a process
shares to be mindful that this will be a process:“This won't be one big reveal. It will be a series of conversations which you will need some boundaries around, as you navigate your own feelings and needs from one day to the next.”
She recommends several steps you can take to help with the process:
shares some ideas on helpful boundaries and preparation work to consider:
Do some inner work first. You'll need people who have the skills to listen unconditionally and keep their opinions to themselves. If you don't have people in your life like this, hire them! Therapy for myself has been the most helpful thing I've done for my son. If I wasn't in therapy, I don't know how my relationships with my loved ones would have survived the last 13 years.
Get some practice. Start by talking about it with people you think will understand, even if they aren't in your innermost circle. Notice where you get triggered, and take that info back to step 1.
Disclose information on a need-to-know basis. I've settled on this balance as my kids have grown up so that I don't share information about their struggles that they may deem private later on (as this is truly their story to tell) but also not withholding information that could help others understand them better. So, if you have a family member who's expectations for your child's attention span, for instance, is unreasonable given your child's skills, it's worth looping that family member into your child's ability to stay seated or attend at that moment.
Know your audience. Think about your family members, neighbors, parents of your child's playmates...are they receptive and welcoming to this information? Or, are you at risk for not being believed if a family member from another generation doesn't agree with the flexibility of your boundaries and expectations of your child?
Prep your family beforehand so there is time for questions. I recall the first Thanksgiving my family got together after my son's autism diagnosis. I emailed all of my extended family to share what I wanted them to know, but then texted more details to my first cousins (my trusted audience) so that they could help their children understand how to play with my son and also help their own parents (my aunts and uncles) understand. This helped me field questions prior to walking into the stress of the holidays and gave my family time to ask questions.
Don’t forget how important it is to be kind to yourself.
shares these helpful ways to support yourself:
Especially when your knowledge about a diagnosis is new, expect yourself to stumble and get things wrong... and cry. It's not a reflection on your child that you have these feelings, it's a reflection on the culture. When we're socialized into an ableist culture, we're swimming in the soup of it without realizing it. If we've rarely been confronted with disability, it can be scary. You want your child to have a happy life, and you may be afraid that their life will be harder because of this diagnosis.
You'll have hard days. On those days, protect your tender feelings. Be a neurodiversity-affirming warrior on the good days. Have conversations with others about your child's strengths and challenges when you feel resourced and ready to field ignorant comments and questions.
No matter how much we prepare or try to do it “the right way”, we are likely to look back and wish we had done something differently.
shares that in her experience with her child, she wishes she had handled his self-knowledge differently:
I was wrong about one very big thing: I never should have kept my son in the dark about his diagnosis. It doesn't matter that he was 3. That diagnosis is his and he has a right to it. It should have been part of our family's vocabulary from the start, and other people in his life shouldn't have known something about him that he didn't know about himself. The advice I took about waiting to tell him was stigmatizing and dishonest. Hiding something about a kid from themself doesn't protect them, it confuses them. They already know something is different about them, and if the people they trust most are keeping secrets, they'll feel it. If we're concerned that society will treat our kids differently because of their diagnosis, the solution isn't to hide the diagnosis but to change society. (On the good days.) So please, tell your kid before you tell others. If they're young, keep it simple. Use the words without whispering, and normalize differences.
Relationships are living breathing things and they do change. How many different ways can I say that it’s complicated?
offers some additional thoughts to keep in mind while navigating your relationships and caring for a neurodivergent child or children:
You're probably farther along on the journey than your loved ones are, so be patient. Keep it simple. Give them basic resources to learn more.
Remind them, and yourself, that your kid hasn't changed, they're still the same kid they adore, and now everyone has more information. The diagnosis is a good thing. It means your kid will get the support they need to thrive.
Request specific support so they know how you want them to help you. You may not get it, but it's a little more likely if you ask!
The apple often doesn't fall so far from the tree. Family members may have undiagnosed disabilities themselves, and be in denial about their traits, so the disclosure of your child's diagnosis might be really triggering for them.
Some people you love may drop away. It's painful, but for the best. We can't force everyone to understand. Your allegiance needs to be with your child. By letting people go who can't respect your child as they are, and your parenting responsibilities, you're setting a boundary that protects your child.
How do you support from the other side?
As a family member or friend, you may be on the other side of this exchange. Someone you care about has shared new information about their child. How do you respond?
shares this helpful phrase and reminder to embrace curiosity:reminds us of some important steps below for those in relationship with other humans. There is so much power in being seen, accepted, and cared for and that is a great place to start:
If you are on the receiving end of new information about a child's development, the best thing to say is "Thanks for letting me know!" followed by genuine curiosity in getting to know the child. Asking questions you would ask any parent is welcome like "What's his favorite thing to play with/talk about?" and not being surprised if it's something you've never heard of before--like a child who is really into air conditioners or knows more than you do about US Presidents.
Believe them. Denial is unhelpful. "But he makes eye contact!" is not an expert opinion.
Don't say "I'm so sorry!" because a neurodivergent diagnosis isn't a disease or a tragedy. It's a way to get the necessary support.
Navigating anything new is hard, and the confusion and struggle that led up to the diagnosis is probably weighing on your loved one. You don't have to rescue them from their feelings, just be with them. Ask, "How can I best support you right now?"
Stay close. Check in. Listen. Don't wait for them to reciprocate. Be there for them unconditionally, and it will pay off in the long run.
Don't expect them to be your sole source of information. Google for your own education, NOT to pass on "helpful articles about a cure."
The e-mail
And as for us we did send an email. It wasn’t exactly like the one up top but there were similarities. Following the formal testing process, we wanted to tell our family what we had learned about our kids. We felt it was important to provide a guide as to the language and how we were learning about our kids. E-mail may not be the choice others would make, but this way everyone was receiving the same information at the same time. We communicated the words we use with our kids and that our children were aware of their identifications. We included trusted resources like neurodiversity-affirming books, websites, and podcasts. We did this so no one needed to be at the mercy of a search engine. And we communicated that we were open to questions. We also kept this to the inner circle of family. And have navigated disclosures in different ways with other types of relationships.
Gratitude
I want to thank
and for contributing to this piece. There is no script or map for this, but we can learn from each other and share our experiences.Another resource…
- ’s book Differently Wired: A Parent’s Guide to Raising an Atypical Child with Confidence and Hope* has many helpful ideas on navigating relationships with others’ around your kid’s neurodiversity in addition to the many topics covered in the book.