Should You Tell Your Child about Their Disability or Diagnosis?

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Recently I met a frazzled mom at a conference about special education. “I’m so worried about my 16-year old daughter,” she confided. “She is defiant, hates school and won’t let the teachers help her. She is really struggling.” As she went on literally wringing her hands, I finally had to ask her, “Does your daughter understand her disability? Does she know she has one? Does she know how to manage it?”

The mom stumbled over her words as she told me that she had “sort of talked to her about it in elementary school” but it quickly became clear to both of us that her daughter did not really know she had a disability. She was acting out because she thought she was dumb, “a loser”  — and that she was a failure. And here was mom, trying to get ideas and help so she could advocate for her. I put my hand over hers and said, “How can you expect your daughter to rise above her disability if she doesn’t even know she has one? How can you start to work with her to make things work better for her?”

This may seem like an exception, this story of a teenager with a significant learning disability who doesn’t know she has one, but sadly, it’s not.  As a family advocate in our school system, I worked with a family after the 7th grade teacher told their son that he had learning disabilities. It was the first time he had heard this from anyone and he freaked out. It took over a year for him to recover from the trauma of finding out he had a disability.

While these stories illustrate why it’s important to inform our kids and not ‘protect’ them by withholding vital information, there is an even bigger reason to learn to advocate with your children. It’s a simple equation, really:  If we want and expect our sons and daughters to be self-determined adults, we have to teach them how to advocate for themselves. And in order to advocate for themselves, they have to know their strengths and weaknesses, how they learn, what they need to learn and how to engage with others. And if they have a disability, I believe they need to know what it is and how to manage it.

Learning to advocate with your child requires compassionate diligence, accurate information and kind flexibility. It requires that parents understand their child’s strengths, learning style, needs, and interests along with their disability. It requires ongoing, age-appropriate conversations and clear and realistic expectations. Teaching your child about their AD/HD or learning disability or autism has to be balanced with not allowing them to use is as an excuse.

A great example of a strong self-advocate is the professor, author, speaker and inventor Temple Grandin. Temple understands how autism affects her in every way. She knows what it makes difficult for her and what the gifts of having autism mean to her. She speaks eloquently about what it was like to be a child who thought in pictures and not words and how she learned to put words to her pictures so she could function in society. Ms. Grandin is a self-determined adult. She has made her dreams come true. And her mother was by her side advocating with her, not just for her.

I understand why many parents don’t tell their children about their disabilities; they are trying to protect them. But the kids know. Withholding information about who they are and how they learn means they will likely internalize it and feel badly about themselves. They might think, like the 7th grade boy did, that if no one is talking with them about it, then it must be really bad and they must be really broken. Kids process very differently from adults and often blame themselves for not being good enough.

When you see it from their perspective, you can see what you need to do differently. Talk to your kids about their challenges just like you talk to them about how tall they are or the color of their eyes. It’s just part of them, and does not define them. Humans show a wide range of abilities — you and your child are somewhere on that continuum. Normalizing differences with honesty, support and love will help your child reach their own dreams. Advocate with your child and watch them blossom.

EP Readers: What do you think? Should you tell your child about their diagnosis? If you did so, what did you say– and how did your child take it? If not, why did you decide not to do so?

About

Anna Stewart is a family advocate, writer, speaker, facilitator and single mother of 3 unique kids. She is passionate about helping families learn to advocate WITH their children and teens and supporting those with AD/HD. Anna is the author of School Support for Students with AD/HD.

Comments (22)
  • jojo

    Thanks for the great clarity of the power of putting our children INTO the mix, into the very conversation that helps direct their lives. I believe deeply in the power and importance of IEPs.

    I think there is often a hesitation to have our kids know their own specialties because of our own prejudices, perceived loss or injustices.

    It is all in our own minds, how we frame our lives and our empowerment.

    The earlier we empower our children from their own standpoint, their own sense of self - the earlier we change the world for us all.

    Cool!

  • Lizzie Romero
    Anna - I loved your article, and your position. In the Latin community there is even more of an issue to share the commentaries and disucssions with your child, as there is often additional pressure to be "Normal".... Thank you for giving light onto this topic. It would be veryMore helpful for you to find a voice on this inclusion and education that specifically reaches the Latin community too.
  • Anna Stewart

    Wow, I love all the great comments. I see a thread from all of you that in order to expect our kids to accept their differences (not always a true disability) we as parents and family members also have to accept that truth. I find that is comes in waves, sometimes the reality that their path is much different than their peers and/or siblings comes crashing down on me. Other times, the waters are calm and we focus on the normal, typical, everyday-ness of our kids lives. They are our kids first.

    It's so fun to be able to talk to my readers- thank you for sharing your wisdom and worries!

  • jaysin00
    On a personal notw, it was very difficult at first to assimilate the information that my child had hip dysplasia. Although not a permanent disability, the news of her abnormality came suddenly and unexpectedly. My wife and I tried to read as much as we could about the symptomsMore and sought out as much information as possible. As a new Dad, I had a lot of fear about the future and fear about the uncertainty. But, sooner than later we confronted the reality of our daughter's limitations and did all we could do to nuture and promote positive, corrective growth. We allowed ourselves to cry and express grief but then recognized and acknowledged what we were up against. We came to a place of peace and down the road, Elle triumphed!
  • Maryrose
    It is a tough decision because you don't want your kids to use their disability for an excuse, but at the same time you don't want them to have low self esteem because they can't keep up with the class and they don't know why. Bottom line is you wantMore them to succeed.. I did tell my son about his disability, but now we struggle with him wanting to be normal and not wanting the help from Special Ed teachers in his regular classes ( all) because it draws attention to him. I say tell tyour child ,but minimize the disability and don't call it a disability call it a learning difference. Make sure your school is on board if your kid does not want specialized help in front of peers. There are ways to get around that. You don't want him/her getting depressed because he thinks that everyone knows he is learning disabled.It is nothing to be ashamed of and we adults know that but let's be honest-- kids can be cruel.
  • Momnificent
    I am a firm believer in informing your children of their disabilities. It is no different than telling a child that has juvenile diabetes. It is a part of who they are that requires a different approach to life...not better, not worse, just different. I have anMore older child with ADHD and a younger child with pediatric bipolar disorder and ASD. I think the more we can accept and love our children for who they are, and be open about it, the more they will accept and love themselves. Focus on your child's strengths and teach them how to cope with their challenges. All human beings have something they must overcome or deal with in life.
  • Sara Bean, M.Ed., Parental Support Advisor
    To ‘MiMi344’: I can tell it’s very frustrating for you that your grandson will not accept his diagnosis. It sounds like you and your family members have already tried to explain what his diagnosis means to him and that’s the best you can do. It won’t be effective to tryMore to make him see or understand his situation in a different way. What might be most helpful is to focus on his strengths, as Anna Stewart says. You can try to make suggestions for him about how he might use those strengths to be more successful in the workplace, or what kind of jobs might be best suited to his strengths. You can also try to talk to him about what hasn’t worked so well for him on the job and what he could do differently to perform better as an employee. If your grandson is open to it, he might be able to find some vocational support in your area. Many states have programs to assist disabled adults with job skills. You can research this more by contacting 211, an information and referral service, at 1-800-273-6222 or by visiting www.211.org. Your grandson is lucky to have such a caring and patient grandmother to help him. I wish you both the best as you work forward from here.
  • SacMom
    my son was diagnosed at 6 with ADHD and anxiety stress disorder- and through the years of medication and counseling he has been able to understand what is going on inside of him; and as not to put a label on him, explained the condition NOT the diagnosis until heMore was older- I took my son off medications at 11- sadly to say my son was diagnosed with a brain tumor at the age of 16 and we really do not know if that was the cause of his behaviors back then or the tumor was caused from the medications? but today aside from still having anxiety (controlled) he is a normal well functioning young man with a business!
  • MiMi344
    I purchased The Total Transformation for my son/wife. I think they have ignored it so far. I have a 30 year old grandson (not their son) with disabilities. He still does not accept totally that his diagnosis is correct. He gets SSI and when he works he cannot stay focusedMore for long periods which causes him to lose his job. Any suggestions of how I might motivate him to try to understand his disability? I am the only one he trusts in the family - everyone calls him lazy and hopeless. When they do speak to him they always ask what he is going to do with his life, etc.
  • Nahg Su-Dah
    Of course you should tell them. Protecting your children from the truth if foolish, idiotic, and contrary to the role of a parent.
  • Larry

    I couldn't agree more with this article-from a different perspective, entirely. I have a dear friend who suffered for years from AD/HD, and her parents did everything imaginable to "explain it away"-to her, to the relatives, etc. She was denied support throughout her teen years, and has, as a result, spent many years trying to overcome a plethora of self-worth issues stemming from thinking she was somehow "slow" and "learning challenged".

    I cannot help but wonder what kind of life she would have enjoyed, had her parents read an article like yours. If it saves but one child from the life she has had to endure because of ignorance, you will have more than deserved a hearty "well done"!

  • Trina

    Hi - A friend shared this with me. I have a child and was wondering what I should do.... telling her about a disorder or not... we just weren't sure, or even who to ask about it.

    Your article made sense - great guide for my heart and head. thanks so much. You gained a reader. Do you consult or is there a way to help find a good counselor that would help us as a family? It is all so new This is a great website. Thanks EMPOWERING PARENTS I even like the name!

  • baylynn73
    I do think that children of an appropriate age for understanding should be told. They need to know that "it's okay." They're still just as special as anyone else and should not feel ashamed for it.
  • McGillicuddy

    Thanks for this discussion. Candor about diagnosis and deficits is important.

    However, I think its crucial to notice that: 1.) Our culture tends to over-focus on deficits, resulting in isolation, and, 2.) Gift-focused connecting and inclusion, led by people with disabled family members, is an important grassroots movement to counter balance this over-done strength.

    See: http://www.mnddc.org/mcKnight/introMcKnight.html

  • PatsyAnn

    Anna - Temple Grandin is a hero(ine) of mine! I appreciate the depth of your voice that you would reference her. There is a really terrific biography on Netflix!Building a HUG machine to comfort herself brought me to tears! Maybe you can post movies on a blog like that. Good idea?

    Now, more and more, people with disabilities are nurtured, highlighted on TV shows etc... what will it take for parents to not try to hide it away or delay the conversation which should be one of empowerment and really, even, excitement for a new pathway, a new way to be.

    Share it with your child as a powerful positive force! it is your job, as the grownup, to know how to navigate for them so they can see navigation is joyful and easy and their birthright!

    Thanks for the article.

    PC

  • Johnny Diberia

    Dear Anna - You are refreshing to me, as a single Dad. I have been so alone, on my own, talking to my son about his diagnosis (AD/HD) and I was really ridiculed because friends (single dads have TOO MANY "FRIENDS" GIVING ADVICE)the other mothers, were basically saying that I was causing him strain and feeling different... and that putting a focus on it, I was hurting his social status somehow, his self confidence - but I found your facebook page too - and read your review of that test. We took it JUST like you did, because it showed him (he is 15) about his own strengths and weakenesses too.

    So as he is empowered, our walls come down, Our trust goes up. Our understanding is gained, and we work together to find ways for it to be COOL.For both of us.

    I liked your website. It was hard to find on your facebook page. Advocacy WITH.... sounds good to me. JJ (Johnny Junior says so too!)

    Thanks from a single dad.

  • Emilie
    Wonderful article. I really appreciate this perspective of working with our children to help them understand their strengths and weaknesses so that they can self-advocate and that both the strengths and weaknesses are part of them but don't define them. Lots to think about, thanks.
  • rembaker
    I agree with telling children about their diagnosis. While I don't have a child with disabilities, I do work in the elementary school setting where we help children find success despite their disabilities everyday. The more we "protect" children from the hard parts of life, the less opportunitiesMore we give them to show their resilience and strength of spirit. Children who are allowed and guided to take action against adversity are more likely to find success in this world and be happier more fulfilled people for it.
  • Nicole Beurkens

    I agree that it is very important for parents to help children understand their strengths and challenges, and any diagnoses that have been given. This can start even at a young age with simple words and explanations. I have seen similar situations to what you described, where a child finds out about their diagnosis or "issues" via a teacher, peer, or someone else's parent. With holding this information from a child ends up doing more harm than good. Thanks for spotlighting this important topic!

  • Dr. Goode
    I enjoy and agree with Anna's opinion about advocating with your child. At the Academy for Coaching Parents International, the focus and support for children with learning differences is to help them find success through their strengths, talents, or passions within the home and school environment. Surely every child needsMore a champion, a parent in their corner, but bringing the child into that corner also to understand a proactive stance supports those strengths and gives parent and child a deeper connection in being the change they want to see. Thanks for the great thought-provoking article.
  • Parent ADHD
    Thanks Anna for such an informative article. I am pleased that I ran into this article, and will look forward to seeing more from you. Keep up the good work. We need more people like you to help keep us informed of the best ways to dealMore with ADD and ADHD
  • Mumof4

    I have a 7 year old boy diagnosed with asd and adhd, he has been made aware of his diagnoses and what it means since diagnoses. I am very proud of my son and want him to be proud of who he is, sure he has autism/ adhd but thats just a part of him. It helps him understand why he thinks and acts differently to his peers and siblings. It helps him identify how he can use his uniqueness to his advantage and how to cope with those things that he finds challenging everyday.

    I do agree that we should tell our children about their learning difficulties or differences, whatever that may be, as they simply have a right to know. They need to feel that its ok to be different and we are proud and supportive parents of who they are....

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