How to Talk with Your Child about their New Autism Diagnosis
As a therapist focused on helping autistic children and their families, I hear the same question over and over again: “How do I tell my child about their new autism diagnosis? Should I?”
Parents wonder if their children will benefit from knowing that they are autistic. They also worry about the details. They want to pick the right time to talk and find the right words— words that leave their children with all the relevant facts and, perhaps most importantly, with their self-esteem intact.
First thing’s first: Don’t hide a child’s autistic identity from them.
If your child went through a psychological evaluation and received an autism diagnosis, they really need and deserve to know about it! In nearly 100% of the cases I’ve seen, children and adolescents feel relieved to learn that there is a name for something they’ve been experiencing and noticing all along. When framed in a neutral way, being autistic provides a helpful framework for understanding sensory and social communication differences. It re-contextualizes and re-organizes a child’s difficult and extraordinary experiences, reducing confusion, self-blame, anxiety, depression, and social alienation. With the right support, this new identity can help your child to cope more effectively with life’s challenges: to harness their strengths, find compatible friendships, identify anti-autistic discrimination, advocate for their unique needs, and much more.
Some parents really worry about the label. They worry children will feel stigmatized, limit themselves, internalize a negative self-concept, or “use autism as a crutch.” Here’s the thing: Even if your child doesn’t have a positive response to this news, they deserve to know and make sense of it, as receiving this diagnosis is part of their life story. Choosing to withhold this information can deeply harm the parent-child relationship in future years. In fact, hiding a child’s diagnosis usually registers with the adult child as a betrayal, no matter how noble a parent’s intentions may have been. So let’s think about when and how to share.
Allow yourself time to learn and emotionally process this news— before you talk with your child.
Each and every one of us has internalized negative ideas about autism, as we live in a culture that pathologizes autistic traits. Our society propagates false and hateful ideas about autism (for example, “autistic people don’t want friends,” “autism is a disorder,” or “all autistic people hate eye contact”). It will take hard work, time, and intentionality to unlearn what you’ve been conditioned to believe about autism. Autism isn’t a social skills deficit, a lack of empathy, or a life sentence of loneliness, poor health, and unemployability. Take the time to learn the truth about autism from actual autistic people! You may be surprised by what you discover!
Understandably, in our anti-autistic culture, parents often have intense feelings when their child is given this label: denial, grief, shame, and anger (sometimes over the news itself, but more often over the years of confusion, distress, discrimination, lack of accommodations, bullying, social alienation, etc.). Relief, peace, and recalibration are equally common responses to a new autism diagnosis, especially when parents have ample support.
Let’s face it: Mostly, parents want to protect their children. Due to our autistiphobic culture, parents of the newly diagnosed often feel terrified about their child’s wellbeing and their future. They worry about whether or not their child will become financially secure, have authentic friendships, and find love in adulthood. They worry about whether or not their child will ever eat anything other than buttered noodles or if they will ever brush their teeth without melting down. They worry about the discrimination their child is likely to face throughout their lives.
Take time to process this news. You are allowed to have complex feelings about this. Journal, talk to a therapist, join a support group. Do what you need to do to fully express and organize the emotions that will naturally arise for you as a parent.
However, whatever you do, don’t bring your anxiety, anger, or grief into a conversation with your child about their identity.
Your child deserves your presence and attunement. They deserve to have their own feelings about being autistic, without taking on and worrying about your’s! Children also deserve to have this important information shared in a neutral, factual, and supportive way.
“But Danielle,” you may ask, “what are the exact words I should use? What are the facts that my child needs to know?” It depends on your child’s unique neurotype, personality, and experiences. All children are different. So: Read, listen, and watch as much as you can about autism from trusted autistic sources! Do your homework! See what resonates as you think about your child. I will link to a couple of my favorite resources as a starting point, but there are so many incredible voices out there, and you know your child best. This new diagnosis does not change that fact. Trust yourself and your ability to do this.
The reality is, learning about being autistic (like any element of a child’s identity) should not be a big, dramatic, “one-and-done” conversation.
This self-exploration is something that should be woven into your child’s everyday life throughout their childhood, adolescence, and adulthood. You will have so many chances to help them make sense of who they are. For example, when your child is looking out the window and notices the rain softly falling before you do, you can say, “Wow, you are so perceptive! You see and feel so many things that others miss. Did you know that’s an autistic thing? I love that about you.” Or when your child acts out at school because of a school assembly, you can say, “It’s normal to feel really upset in loud places with lots of people. That happens for most people, and especially for autistic people like you and your uncle Matt. You’re not the only one who has a really hard time with this sort of thing.” A child’s healthy self-identity is made up of millions of tiny moments like this, not the exact phrasing a parent uses in one conversation.
Hot Tips for Your First Talk:
Don’t:
Talk to your child before you can confidently explain what autism actually is
Make this conversation feel formal, serious, or in any way unusual (Sitting down to “have a talk” will create unnecessary fear for your child; think about how you might talk with your child about getting a divorce— and then don’t share in that setting/format)
Talk about autism as a gift or “superpower” (This is inaccurate, a lot of pressure, and minimizes the difficult realities of being autistic)
Talk about autism as a disorder or autistic traits as something overcome or “work on” (This is inaccurate, harmful to self-esteem, and minimizes the joyful realities of being autistic)
Only identify famous autistic people for your child (They need to feel normal, like part of a real and lovely community— not like the only people who could possibly understand them are Albert Einstein, Elon Musk, or Temple Grandin)
Treat this conversation as high stakes “one-and-done”
Pressure your child to feel any specific way about being autistic or insist on a long initial conversation
Introduce this during a major transition or challenging time for your child, such as back-to-school season, holidays, or other times of increased stress
Do:
Process your own feelings and educate yourself first
Find a calm moment to chat, somewhere your child feels safe; consider doing something while you talk such as building with legos
Have previewed, age-appropriate, and affirming books readily available for your child to learn more about being autistic on their own terms
Present autistic traits neutrally, as both helpful and difficult, depending on the context
Identify autistic loved ones that can serve as “relational mirrors” for your child, to help them feel less alone and part of a wonderful community
Accept your child’s emotions unconditionally; be especially prepared for confusion, relief, anxiety, and shame
Keep the first chat short; instead, look for everyday moments to celebrate and explore your child’s autistic identity
A Few Resources to Explore:
For Children:
My interpretation of Dr. Walker’s work (written for child readers): https://www.underwingtherapy.com/what-is-autism
My current favorite child-friendly book (with comics!) on autistic identity: https://us.jkp.com/products/being-autistic-and-what-that-actually-means
A lovely book for older children and tweens on autistic identity: https://us.jkp.com/products/the-awesome-autistic-goto-guide
For Parents:
An accurate definition of autism (for adult readers) from Nick Walker, Ph.D.: https://neuroqueer.com/what-is-autism/
My current favorite book for parents of the newly diagnosed: https://www.beacon.org/Sincerely-Your-Autistic-Child-P1685.aspx
Another helpful blog post for parents, on how to talk with children about being autistic: https://ausometraining.com/explaining-autism-to-your-child/
Danielle Maxonight is a Licensed Clinical Social Worker in the State of North Carolina. She has over a decade of clinical experience working with children and families.
In August of 2015 she created her private practice, Under Wing Therapeutic Services, PLLC, which offers attachment-based therapy for parents, children, and adolescents. Danielle specializes in working with autistic, gifted, twice-exceptional, or otherwise neurodivergent families.
Under Wing Therapy supports families in Asheville, Raleigh, Durham, Cary, Chapel Hill, and all across North and South Carolina.