Brenda Dater, MPH, MSW
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Disclosure 101: Why Parents Need to Talk to their Kids

1/26/2016

5 Comments

 
By Brenda Dater
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"How will I know when it's time to tell my children about their Asperger's/Autism diagnoses?"
"What should I say if my child asks me a question about autism?"
"Won't it just hurt his self-esteem to know a diagnosis?  How does having a label help?"
"What's the best way to tell my children about their diagnoses?  What shouldn't I do?"

Parents call AANE with these and similar questions everyday.  They want to help their children understand themselves--understand how their diagnoses may affect them--but they also worry about what happens next.  I posed the question of why parents should tell their children about an Asperger's diagnosis to my 18-year-old son, Noah, who was diagnosed with Asperger's when he was 3 years old.  With the help of our dog, Lavender, this is what he had to say…

And here are some additional thoughts about disclosure that didn't make it into the video:
  • Although Noah talks about how things aren't always "his fault" he doesn't mean that he doesn't take responsibility for his actions.  He means that he doesn't feel bad about himself when something is particularly hard for him (like hand writing or socializing with new people).  Most people do not use Asperger's/Autism as an excuse, but use it to explain and self advocate.
  • Before parents disclose to their children they need to be comfortable and understand Asperger's/Autism/ADHD or any other related diagnosis. 
  • It helps to point out that other people have a mixture of strengths and challenges--your children aren't the only ones who struggle AND their struggles don't negate their strengths.
  • Disclosure talks are similar to sex education talks.  Short, developmentally appropriate, clear, ask if your child has any questions and leave the door open for future conversations.
  • There's no one way to "disclose."  If the first conversation doesn't go well, you will have another opportunity to try again. 

Looking for more information on disclosure? Check out the disclosure chapter in Parenting without Panic. You can join our Parenting without Panic community on Facebook.
5 Comments
debbie
1/27/2016 05:55:49 pm

hey there, i am in a spot, i think my grandson has autism but i dont know how to speak to his dad (my son) in respect to having him diagnosed. My son thinks he is just adhd but i can see so many other signs that dont line up with it but do autism - sorry i dont mean to sound like I am the only person in the world, i just dont want to hurt my son but i do need for my grandson to be happy thank you

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Emily
1/29/2016 03:34:01 pm

I had this prob with my X though not X st the time I found some good articles that describe the differences in conditions made him read them then asked him if anything seemed similar to our son regarding the asd symptoms, nhs page and boots page I found helpful , good luck xx

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Brenda Dater
1/31/2016 09:34:37 am

Hi Debbie-I'm glad you reached out to me about your grandson-you sound like a very caring grandmother. This is a difficult situation and the Asperger/Autism Network (AANE), where I work, works with grandparents and families. Please email or phone there and we can help you approach the issue.

Email: brenda.dater@aane.org
Phone (617) 393-3824
Website: www.aane.org

Reply
Catherine
1/30/2016 07:03:31 pm

You are fantastic and your son is so lucky to have a mum like you you have given me some great tips and thanks so much

Reply
Brenda Dater
1/31/2016 09:31:46 am

Catherine-thanks so much for your kind words. I'm lucky to have Noah for a son too! Hope the tips help you and your family.

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    Brenda Dater is the author of Parenting without Panic: A Pocket Support Group for Parents of Children and Teens on the Autism Spectrum (Asperger's Syndrome). Brenda is also the Director of Child and Teen Services at AANE.

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