When (and how) To Tell Your Child About Having Autism and Other Diagnoses

Written by Michelle Brown

When (and how) To Tell Your Child About Having Autism and Other Diagnoses

This article will review a very common dilemma for parents and caregivers… when is it appropriate to discuss with your child that s/he has a diagnosis such as autism, ADHD, Sensory Processing challenges and/or a learning disability and what are some of the best ways to do this.

For many families, receiving a diagnosis can be extremely overwhelming on many levels.  On one side, many parents and caregivers may be relieved to finally learn why their child is behaving and having the challenges they are.  “Ahhhh, there is a reason for all the difficulties!” But after that initial relief often comes a strong fear response. Families are flooded with questions about the future and how things will be for their little child.  Many parents also want to protect their child. Their child is already getting into trouble a lot, so why burden them with a label that confirms they are different?

However, the conversation will likely occur at some point.  And it might come up before you planned it to! Therefore, here are some things to consider before and during this conversation to help you and your child:

Being ready yourself

Because of the feelings that you may be coming to terms with, before you say anything to your child, you need to be in a good place and have accepted your child’s diagnosis yourself.  And this may take you some time - which is completely normal. So don’t rush anything. Give yourself the time you need to be with your complex feelings. Seek out the support you need to learn to deal with this official reality (I say official because many parents have a strong feeling or know a diagnosis is likely before they get one).  Reach out to supportive friends and family, support groups on FaceBook or in your community. You are not alone. I’ll repeat that… YOU ARE NOT ALONE.  I know you may feel that way but so many parents have gone through or are going through the exact same thing. So reach out and get support. You can get so much relief by talking to one person who has been in your shoes.  You can even consider seeking counselling to help you process your feelings and beliefs.

The primary reason you need to be ready yourself is children who are neurodiverse are very perceptive.  They have like a 6th sense when it comes to feeling emotional energy. If you are anxious, your child will pick up on it.  If you believe your child is going to have major challenges for the rest of his life, your child will pick up on this. So you need to have yourself in check so you don’t give your child mixed messages.

Have a plan

Being prepared will dramatically help you.  It’s a good idea to plan out exactly what you will say to your child.  Rehearse it with the family members you want to be present with you. You can have anyone there to help you.  Some families choose to have a medical professional or a school counsellor who knows your child well to help support the conversation.  Consider tough questions your child may ask and have encouraging responses ready. Have resources on hand to help explain the diagnosis and what it means that are developmentally appropriate for your child.  Some examples include: All My Stripes: A Story for Children with Autism by Shaina Rudolph and Danielle Royer, All Cats Have Asperger Syndrome by Kathy Hoopmann, My Brain Needs Glasses: ADHD explained to kids by Annick Vincent, The Survival Guide for Kids with ADHD by John Taylor.

Share how we are all different

It’s important to normalize things as much as possible.  We are all different.  We all have our own strengths and challenges.  So share these with your child. You can say, “I’m am good at talking with people and caring for them but I find keeping track of the bills and money really hard.” Or, “Dad is really book smart, he can read a book in a day and loves math but he isn’t the best at sports and finds them difficult.”  You could also have each person share a strength and challenge about themselves. Then, ask your child to share something that he thinks he’s good at and something he finds difficult.

The main point to reinforce is that we all have things that we are naturally good at or excel at AND we all have things we have to work at.  Having a diagnosis just helps explain why we are the way we are, and why we may find some things harder to do. Having self awareness of our strengths and needs is important for everyone.  Challenges are not bad or wrong.  They are just things we have to work harder at to manage.

Timing it right

As with everything about your unique child, the right time will also depend on your child.  Experts seem to agree that most children will not be emotionally ready before age 7 or 8.  Age aside, consider your child’s developmental and emotional maturity. Is your child aware at all that she may be developing a little differently compared to her peers? Has your child started to ask you questions about why she struggles more than others?  Or, why she can’t do things as well as other kids she knows. Some children may have heard terms like autism and ADHD and may ask you, “Do I have Autism?” Or, “Do I have ADHD?” If this is happening, it can be a very natural segue into starting this conversation.  But if this is not happening, you may want to wait a bit longer.

Another thing you can try is reading a story about a child who is wired differently and seeing if your child has any revelations.  Exposing your child to other children who have challenges through stories or movies may help give you some insight to where your child is at in their own self awareness.

Further, if you have started therapies or behavioural intervention with your child it is likely that your child will start to notice that no one else they know goes to these specialists.  When this happens more questions may arise.

Also, keep in mind that most children know there is something different about them - that something is a bit off but they don’t know exactly what that is or why.  They may have noticed that they seem to need more breaks from the classroom than others, or that making friends is harder, or that smells seem to bother them more than their peers, etc.  They may also be quite aware that they always seem to be getting into trouble, compared to others. Often learning about why they are the way they are can ease some of their own fears and curiosities about themselves.  It can reassure them that they aren’t broken, bad or less smart than others. It can help break the negative self concept they developed from feeling like they constantly mess up. 

How your child may respond

How your child responds to this information will be unique to them as well. Some children may respond with a sense of relief… “Ahhh, that’s why I react that way!”  Or, “So that is why I don’t like the loud sounds that don’t seem to bother anyone else.” It can be a bit of a revelation for them and they may even feel empowered that they are not alone and there are other children who are more like them.  

Other children may think that having a label says there is something wrong with them.  Therefore, it will be important to have a prepared response that shows your child all the awesomeness they have as well.  Highlight strengths they have that are directly related to their diagnosis. For example, “You are very sensitive and this is such a great skill because you feel what other people are feeling.  Many people cannot do that.” Or, “You are reading at 3 grades above your grade!  This is one of your superpowers!”

As your child becomes more aware of her unique needs, teach your child about self advocacy as soon as she is ready. Again, having self awareness can be very empowering.  You and your child have likely learned many tools that help manage her needs. Those tools need to be shared with the people who do not yet know your child as well. Teach your child who is appropriate to share with.  Have your child practice sharing about herself with you so she learns what is appropriate to share and what may be too much information.  This will help your child to self advocate for herself.  For example, she can share with a teacher, “I wiggle a ton, so can I please be excused to get a drink of water, so I can get my wiggles out?”  Or, your child can tell a friend, “I get distracted easily, that is why I like to sit at the back of the class by myself.”

Helping your child adjust and accept

Give your child the time he needs to accept this new information.  Some children will be relieved and will simply say, “Well that makes sense!” and walk away, while other children will have a 100 questions.  Some children will need time to digest this information and if you see this, reassure him you are here for him when he is ready to talk about it more.  You may want to consider utilizing a counsellor or psychologist to help your child process this information and reflect.

Some experts suggest finding role models for your child.  This can be an older child you know at school or in the community who has similar challenges. Ask your school for a recommendation of a student who may be a good fit for your child.  It may be really helpful for your child to have someone to talk to who is going through similar things. Role models can also be people in pop culture who have disclosed their diagnosis. I work with a young girl who loves the character Sheldon on the TV show, Big Bang Theory.  He was a great fit to talk about his challenges how he manages them and how she has similar challenges.

Deborah Reber, author of Differently Wired shares in her book exploring brain science helped her son learn about his differently wired brain.  Using kid-friendly sources of science helps to de-personalize brain differences because it is science.  Her son also really responded to Carol Dweck’s work around fixed and growth mindsets. Teaching your child that the brain is not fixed but rather is changeable and that learning changes the brain can help your child understand that there are things s/he can do to improve how we respond to challenges. 

Michelle Garcia Winner’s Social Thinking™ curriculum and Leah Kuypers’ Zones of Regulation™ curriculum contain fun activities children can do to learn about rigid, rock brain thinking and flexible thinking.  These teachings can help your child see that challenges are just that, challenges, and we can overcome them with the right mindset.

Telling your child about his/her diagnosis can be a scary situation for some parents and caregivers.  However, being prepared, having a clear understanding of your feelings and being surrounded by supportive people can make the experience much more positive for you and your child.

All the best you and remember, Be the hero you are meant to be!

Author: Michelle Brown
Michelle Brown is an occupational therapist and has been helping people since 1996.

You can find out more about Michelle Brown here: http://www.specialkidshero.com
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