Parents with children diagnosed with autism admit that deciding when and how to tell their child about their identification is agonizing—it’s already so difficult trying to understand our child’s emotions.
It’s easy to see why parents admit discussing sex, money, religion, and drugs with their child is easier than discussing what makes him or her different and why.
Sharing information about autism spectrum disorder in a positive, matter-of-fact, and age-appropriate way helps set the stage for your child’s ability to understand, accept, and adapt to the reality of autism in his or her life.
Stephen Shore, author of Beyond the Wall: Personal Experiences with Autism and Asperger’s Syndrome, advises parents that it’s a four step process:
- Make the child aware of his distinctive personal strengths.
- Develop a list of the child’s strengths and challenges.
- Without judging, compare the child’s strengths with those of potential role models, friends, and loved ones.
- Introduce the label autism to summarize the child’s experience and disability.
My daughter, Hannah, was diagnosed with autism spectrum disorder at the early age of eighteen months. She presented with all of the classic, hallmark signs of autism, and doctors had no doubt about her identification. Therefore, at a very young age, she was a therapy child consumed in a merry-go-round of intervention including, but not limited to, physical, occupational, speech, developmental, feeding, social/play, aquatic, equine-assisted, and music therapies. Our home’s revolving door confirmed Hannah’s full-time job and my second, full-time job to our neighbors and friends alike.
Because of her treadmill of therapies, she has always been raised knowing she’s on the spectrum. And Hannah has reaped a tremendous amount of benefits because of it. We have never allowed the language of “victimhood” into our vocabulary or allowed autism to be an excuse. Autism is not what defines Hannah, nor is it a scarlet letter that she needs to shed.
Not all families are fortunate enough to receive an early diagnosis. I say “families,” because an autism diagnosis affects the entire family unit and not just the individual. Disclosing to a twelve-year-old that they have autism does require a level of preparation. I also realize that all children with autism are different.
Bottom line is . . . you know your child best. Although I still wish we would’ve had Hannah’s diagnosis earlier, I believe that being open with her and those in contact with her has maximized her success. Your situation obviously cannot and will not play out exactly like ours, but I believe that by reading about the benefits of early disclosure it’s obvious that every child on the spectrum could be empowered.
Early disclosure . . .
Allowed us to capitalize on strengths and positives while providing supports and tools for challenges and resilience.
Hannah was enamored by space, trains, animals, numbers, and reading. We jumped right into those affinities or passions with her. Her affinities allowed us into her world so we could slowly pull her into ours. Capitalize on your child’s strengths! One day they may turn into a career.
We were also honest with her when there wasn’t two-way communication, and she wasn’t listening to others’ words. That’s when expressive communication was the hardest for her. Cognitive flexibility, with the switching of conversations or thinking about more than one thing at once, continues to be a challenge. However, knowing this builds her resilience with the skill itself. She has learned that executive function (the set of mental skills that help you get things done) is a weakness. Therefore, she now has her own supports with checklists, schedules, calendars, and timers. She has been empowered!
Allowed classmates to be educated on autism to aid in awareness and acceptance.
In each of Hannah’s classrooms, every year, either she or I would discuss autism in general with the class as a presentation. We would begin with a video or children’s book. Over the years, kids have learned to accept Hannah for Hannah. The autism was obvious to me when I had her in my sixth grade math and science classroom; however, when I’d bring it up to her longtime classmates, it really wasn’t an issue that they believe impacted her greatly. That’s acceptance!
Allowed her to find her own voice of advocacy and the power of the autism community.
I’ve always told Hannah that advocacy means speaking up for what you need to be successful. At school, one practical way to do this is to include a list of supplies for each of her classes on the front of the binder. In our home, a list sits on our kitchen table so she has direction when she comes home from school with instructions like: get mail, put garage door down, grab a snack, unpack lunch box, practice violin, and so on.
She corrects people when they say, “You don’t look like you have autism.” Hannah says that autism doesn’t have a look and she’s proud she has it. Hannah has also learned from those in the autism community that have come before her, like Jennifer O’Toole from Asperkids. Having role models in my daughter’s life with autism helps both of us understand and embrace her differences.
Allowed her to participate in friendship groups and social/play groups at school and community centers.
Scripted language, reciprocal language, figurative language, and body language have all been integral to training Hannah on social pragmatics. Having words already memorized and ready to use for interaction lengthened (improved) her time with exchanges. Hannah said that individuals without autism have no idea how much they say without a word even being said and that body language is an invisible nuance to her. Knowing her deficits fuels her resilience!
Allowed her a reason why she was different, but not less.
Hannah has always seen the world through a different lens, and she never had to wonder why. She knew her brain worked differently than others since she was young. To help her understand, I showed her the cables on the back of the television to illustrate a sophisticated discussion of neuroscience, where we discussed how 100 billion neurons making 100 trillion connections leads to sensory overload for someone with autism. Through psychological testing in preschool, it was found that she was at-risk for some pretty heavy emotional challenges associated with autism. So, we have made mental health a priority. Hannah knows that anxiety is the nemesis and the importance of self-control.
Allowed her to provide herself with a sensory diet to regulate her sensory needs.
When Hannah was younger, we provided the sensory diet of the Wilbargar Protocol (brushing therapy), swinging, joint compressions, weighted vest, yoga ball, and more. For sensory modulation these days, Hannah is able to discreetly calm her own hypersensitivities by a leisurely bike ride, Silly Putty, drawing, interaction with her beloved cat, or alone time on her iPad.
Allowed her to know that it was okay to ask questions about the hidden curriculum.
Hannah appreciates rules or a code to give her direction because it’s extremely difficult for her to simply pick up subtle social cues by watching those around her. She has found The Asperkid’s (Secret) Book of Social Rules: The Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger Syndrome to be extremely helpful.
Allowed me the grace of helping Hannah compensate for and embrace her autism as a family.
We “do” Hannah’s autism as a family—there’s no other way if she’s going to be successful. Autism isn’t something anyone can do alone and it’s 24/7. Sometimes we tiptoe around her anxiety; other times we correct her miscues. But we all agree that Hannah is hard-wired to be who she is and our goal is to help her be as independent, well-adjusted, confident, and happy as possible. That may look like helping her to carry out directions in a recipe, strategize the best move during a board game, or keep track of time. She knows she always has our support.
Allowed her incredible children’s literature on her level that discusses autism.
We cherish our time as a hyper-literary family, and this joy of books has helped Hannah fill in some of the questions surrounding her autism. She has found great comfort and pride in the following books on her shelf:
- All My Stripes: A Story for Children with Autism
- Temple Did It, and I Can Too!: Seven Simple Life Rules
- I See Things Differently: A First Look at Autism
- The A in Autism Stands for Awesome.
Our children, despite their diagnoses, have unimaginable potential. Disclosing their autism at the appropriate time and in the most thoughtful way will emotionally scaffold them for making the most of their future.
I welcome your questions, thoughts, and concerns on this topic—just drop them in the comments below or contact me. Also, subscribe to our new mailing list below for autism resources, the latest blogs, free downloads, and information about my upcoming release in April, Dragonfly: A Daughter’s Emergence From Autism . . . A Practical Guide for Parents.
Take care in the New Year!