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Explaining autism to a child who’s affected by autism

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Several years ago, my child was diagnosed with Asperger’s Syndrome. Our pediatric neuropsychologist suggested we wait to talk about it with our son, who was then nearly eight.  About a year went by before we had a strong understanding of Asperger’s as an autistic spectrum disorder; and as our son grew older, he’d heard the words “autism” and “Asperger’s” and began to ask questions.  

The time came when I felt my son and I needed to have a heart-to-heart conversation about Asperger’s, autism, and what it meant for him and our family. Later I had similar talks with my neuro-typical younger son. Here are some strategies I used for my conversation that may help you when you’re ready to talk about autism.

1. Seek Professional Advice.
Don’t try to reinvent the wheel.  It’s likely your child is not the first who’s been diagnosed by his doctor or specialist. It’s also likely that your chosen professional has helped many families explain autism to a child who’s been diagnosed.  Your pediatrician and team can give you advice on how to approach the subject and give you some good talking points.  Your doctor knows your child personally and can help answer questions the next time you have an appointment.  Another good idea: Set up an specific appointment to address autism with your child.  There’s no sense in going it alone here.  Support with this delicate and important conversation is key.

2. Timing is everything.  
Be selective and intentional about the timing of your conversation.  Choose a time in your child’s life that is likely to be less stressful— such as the summer when school is out.  You’ll be answering questions and you don’t want your child to have to shift focus to study for a test or participate in an important event.  Also, avoid birthdays, major holidays or vacations.  Allow for special times to remain special and not interrupted with this first conversation.

3. Success depends upon previous preparation.
Have a game plan and prepare yourself.  Make a list of questions your child may ask, and answer them in advance.  Make note cards of autism facts and statistics; or show your child a pertinent website like AutismSpeaks.com.  A loose outline of your conversation will help you stay focused and on point.  You may not be able to answer all of your inquisitive child’s questions, but having some facts in your back pocket will help move the conversation forward and keep you feeling calm and in control.

4. Stay positive and reassuring.  
You love your child and autism won’t change that— make sure you let your child know how you feel.  Assure your child that nothing has changed between today and yesterday.  Tell him or her about famous people affected by autism or print an article about a cool achievement by a kid with autism.  Make your child feel loved, accepted and that he or she isn’t alone.  Let them know they have support from you, family members, their doctors, therapists and teachers.  Validate their feelings and meet them with positivity and enthusiasm.

5. Expect the unexpected.  
In the same way that no two people with autism are alike, neither are their responses to this personal information.  It’s normal to feel unsure about this big topic and what it means for their life.  Alternatively, your child may act like he doesn’t care.  This response may be genuine or may be a sign that he’s not quite ready to have this conversation— and that’s ok.  If the conversation doesn’t work the first time, let it go and wait for another time when you think your child may be ready.  

Celina Miller is a writer, advocate, trained yoga instructor, musician, and mother to three — one of whom is affected by Asperger’s syndrome. A graduate of the University of Virginia, the former editor-in-chief of YogaMom Magazine volunteers her time with various organizations to help people affected by autism, mental health issues or homelessness. A member of the Board of Directors at Oasis Center for Women and Children, Miller is the co-chair for a multi-million dollar expansion that will provide needed play therapy services and resources to children in need. A volunteer with Autism Speaks, Miller reviews grants and is a committee member for the Alabama Walk Now for Autism Speaks. In this capacity she meets with various organizations to encourage involvement and further raise awareness. You can visit her website and blog at celinamiller.com. Miller lives in Birmingham, AL with her husband and children.

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