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When Should You Tell Kids About Their Disability?

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I am a member of several online and in-person groups for parents of kids with disabilities, and inevitably in every group someone has asked, “When did you tell your child they have a disability, and how did you tell them?”

The answers are as diverse and varied as the people who make up the groups.

I parent two children with obvious disabilities. My youngest has Down syndrome, and my middle daughter has cerebral palsy. I cannot think of a time we “told” them because their diagnoses have been words they’ve heard all their lives.

My daughter with cerebral palsy is a preteen, and while she has always known about her diagnosis, at her current age, she has many questions about her disability. One of the best things I have done as a parent is connect her to her community. When those questions come up, we have adults with cerebral palsy who are a part of our lives who have more wisdom on the subject than I do as a non-disabled mother.

I don’t know there is a right time to tell kids, although I personally believe it should be talked about openly. I would not want any unintentional messages of shame or secrecy surrounding disability passed on to my kids. Yet, I am aware some kids might not be aware of their disability, even if we talk about it, until they get older and begin to see those differences for themselves and ask questions.

Knowing this is a big topic, we reached out to our community and asked parents, “When did you tell your child about their disability?” But we also asked disabled adults about their experience: “When did your parents tell you about your disability? Do you feel the time and manner in which they did it was helpful? When and how should parents tell their children about their disability?”

We hope these responses are helpful as you wrestle with when to tell your child about their disability or how to further answer their questions:

“I told my son as soon as he asked! He is nonverbal and was not able to communicate his own thoughts until he began typing at the age of 10. He asked me why he couldn’t talk, and I told him that it is because he has autism, and answered all his questions.” — Jodie N.

“My parents told me as soon as I was old enough to understand that just because I was born with differences doesn’t lessen my value as a person. I have tried to do everything I can to adapt to and live with my limitations while being as productive as my conditions allow for. My parents raised me as though there was nothing different about me. The opinions of others were what made the disability obvious.” — Melissa H.

“My son was just 3 years old when I first told him about his mix epilepsy and ever since have trained him to be self-aware. He knows to read and watch out for food allergies and voluntarily avoids those foods. He knows how to put together nebulizer cup and assemble it. Last but not least, we are training him when to ask for help when and if a seizure occurs. [He] is now 7 years old with an IEP, receiving speech and O.T. therapy  — he is thriving!” — Aurora M.

“My mom disclosed it to me when I was 15. She had always known I was autistic. It was only when I was struggling with depression in high school that it was revealed to me. I do feel that the way it was disclosed to me as well as the timing was very helpful. Learning I was autistic helped answer so many questions I had, especially with my failures in social interactions. I can’t tell when parents should disclose to their children. I do know my mom didn’t tell me because she didn’t want me to feel any different than my older siblings.” — Jonathan D.

“When he was 6. Only because he wanted to know why he can’t do what other kids in his class can do. He has ADHD/autism, and he can’t sit still or concentrate, for example, so I got a book called ‘Zak has ADHD,’ and it explained it perfectly to him. Whenever he has struggles at school now he tells me so I can tell the teacher in order for him to get the right help and support he needs.” — Mandy M.

“I don’t ever remember being ‘told’ I have a disability. I just know [my parents] and doctors answered all of my questions along the way. And that I could spell spina bifida by the time I was 4.” — Lisa H.

“I told my son the day he was diagnosed at 8 years old. It’s his diagnosis, his life, and he deserves to know. We are not ashamed or embarrassed of him in any way, and he shouldn’t be either. Hiding it implies shame, and I never want him to feel bad about who he is. I really hope we are heading toward a more inclusive and educated future about autism and parents don’t feel the need to hide this from their kids anymore.” — Erica R.

“Never needed to be told. I noticed all by myself. As far as understanding medical details etc., I’m sure I could explain cerebral palsy to others by the time I started school.” — Kathleen M.

“I told my son within six months of his diagnosis. He was 6 years old. I needed some time to wrap my head around it first. But I don’t think an autism diagnosis should be kept a secret. Secrets can imply shame or guilt. I want my son to embrace who he is and feel that it’s OK to tell the world if he wants to. Which he often does.” — Melanie L.

“I got told when I got arrested for being drunk and disorderly. The Sargent at the time took pity on me because I reminded him of his son, who was also autistic, and apparently when he gets drunk or mixes his drinks he can go off the rails like I did. I have always known myself that I had something different about me. I now have a doctor’s appointment (autism specialists) to see which ways can help me cope, like when I’m at work it can get busy and then it’s all too much for my mind to process at once.” — Liam M.

“First grade. My 20-year-old has Down syndrome, and we wanted him to have the words to explain it if anyone ever asked why he sounded, looked different, etc. It worked beautifully for us, as he has always been proud of his differences.” — Michelle S.

“I don’t remember ever being ‘told.’ I guess it was just natural questioning from appointments and becoming aware of differences.” — Marie H.

“We never really kept my son’s autism from him. We just introduce how it affects him as it comes up. He’s in first grade and super involved with advocating for himself and planning his IEPs.” — Nicky P.

“I was diagnosed at 9. I knew I was being assessed. I knew the fun games were actually tests, but there wasn’t a right or wrong; they were just to see my strengths and weaknesses, to help me better so I could achieve all my goals. So I knew right away I was diagnosed, and it just was a word to describe the traits I was born with. I felt it was brilliant way and time to tell me because technically I wasn’t told; I was in on it and in control. Then I went to a social skills group and some of the kids didn’t know about their diagnosis. They thought they were ‘normal’ and we were ‘weird’ and didn’t notice they acted the same as the rest. It made me sad. I’ve met a few of them later. They really suffered through adolescence. I’m glad I was in on it. I never had to be transitioned to being in charge of my own care because I was always a major part, because I own my brain and body so of course I get a major say. And that’s the way it’s always been.” — Mackenzie S.

“When [my son] was at an appointment when he was 13 and saw his MRI, the light bulb went off and he realized it was something. He was diagnosed at at 4, almost 5, with severe apraxia of speech.” — Dawn Z.

“I was diagnosed at 4 years old. I can remember it so they never really had to tell me. I think the conversation should be as young as it can be understood. It was a constant topic growing up when I didn’t understand a lot of social things. But the biggest factor was, at 6 years old, I knew I was different. I just looked at ‘normal’ kids, and for some reason we were separate, and knowing I had autism helped me deal with a sense of different worlds.” — Alex S.

“Immediately with my middle son, and even before a formal diagnosis with my oldest. My little guy is 3 and doesn’t understand it all yet, but we won’t hide anything. We have been totally honest. They grow up knowing they are wonderful, whole and perfectly made in God’s eyes. There is no shame in our game. We let them know and understand their strengths, and it explains why they may struggle with certain things or feel different. There’s nothing to be ashamed of, so we have taught them from day one to be proud of themselves.” — Tracy S.

“We have always discussed her disabilities openly as a simple fact about who she is. ‘Basically you have these conditions, it is just the way it is, and everyone is different and that is what makes the world so amazing.’ We wanted her to always know these conditions are a part of her and to learn early on how to accommodate for them as necessary.” — Stephanie G.

I was never ‘told’ I had spinal bifida from my parents. All the doctors appointments kind of gave it away that I was different. My parents try to treat me the same way as my sisters with some boundaries. Honestly, I didn’t know a lot about spinal bifida until I got a lot older.” — Maria S.

“My parents still deny my diagnosis and are very difficult about it with me. But I always knew I was different because the other kids made sure I knew.” — Laura W.

“We have always discussed her diagnosis with her. She knows it and can discuss what it means to her.” — Chaula B.

What are your thoughts? Let us know in the comments.

Getty image by firina

Originally published: February 16, 2018
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