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Why I no longer use the puzzle piece when talking about autism

3/14/2021

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The puzzle piece, and the 4-piece interlocking puzzle as pictured below, have historically been the visual icon associated with autism. In fact, I used to own many shirts, key chains, bags, and other items bedazzled with the iconic emblem. But I have spent the past year at home during the pandemic listening to autistic adults, and I would like to share how my perspective regarding the puzzle piece has changed.
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Here's the honest, rarely discussed truth. Autistic children become autistic teenagers. And autistic teenagers become autistic adults. Autism doesn't "end" at age 18. I have been thinking about this a lot lately because my autistic son is now 16 years old. As he transitions into young adulthood, I have been paying closer attention to what autistic adults are saying on social media (how fascinating is it that we now have this platform for continuously listening and learning?!). One of the topics that is discussed by many autistic adults is their concern regarding use of the puzzle piece to represent autistic individuals.

Here are some of the issues surrounding the puzzle piece:
  • The preschool puzzle piece contributes to infantilism. Regardless of the level of support needed, autistic teens and adults are NOT perpetual children. ALL people deserve respect...not SOME...ALL.
  • The interlocking puzzle pieces in different primary colors that are used by some autism organizations create a visually overstimulating hot mess that is not consistent with the sensory preferences of most autistic individuals. Also, in what world do mismatched puzzle pieces fit together? If anything, the puzzle pieces should all be the same color so that the puzzle analogy actually makes sense.
  • "Light it up Blue" is a theme used on April 2nd to recognize World Autism Awareness Day and thus, the single puzzle piece used to represent autism is often blue. One issue to consider is that this seemingly harmless use of color perpetuates the myth that autism is a "boy disorder." While boys are 4 times more likely to get diagnosed with autism than girls, it does NOT mean that there are fewer autistic females than males. It simply means that autistic girls often go undiagnosed because they do not fit the male diagnostic stereotypes and are better at masking the signs early on. Some autistic girls get misdiagnosed as having ADHD or anxiety disorder or fail to receive any diagnosis or support at all. In an attempt to create diagnostic gender equality, autistic adults suggest that we use the slogan Red Instead in lieu of Light it up Blue. 
  • The puzzle piece represents autism awareness. It is time to move past awareness and charge forward with autism acceptance. Autism is not an illness or a disease that needs to be cured. An autistic person will all always be autistic. Anyone who claims to no longer be autistic was either incorrectly diagnosed or is masking their signs from society (which must be mentally exhausting...pretending to be someone you are not, just to please an unaccepting society). And another thing I want to voice is this...AUTISM IS NOT A TRAGEDY. The tragedy is when neurotypical people seek to change a neurodivergent person to make them act in a way that they believe is more conforming to societal norms. My son is autistic. My son has sensory differences. My son perceives the world through an autistic lens. But my son is not less important, less precious, or less loved by me and my husband than our two neurotypical daughters. Being neurodivergent does not make someone less valuable to society. We have work to do people. For the sake of autistic individuals all around the globe...we MUST do better.
  • The puzzle piece suggests that an autistic individual is a puzzle to be solved, rather than a person to be accepted. Yes, autistic children benefit from different types of therapy and educational support; but the goals should always be focused on improving PARTICIPATION, INDEPENDENCE, and ENGAGEMENT in daily routines instead of trying to "fix" deficits identified on standardized tests.

So...this conversation now leads us to the elephant in the room. If we no longer use the puzzle piece, what do we use instead? Actually autistic adults are asking that we use the infinity symbol and say bye-bye to the puzzle piece. Some autistic adults use the red infinity symbol to represent autism (RED INSTEAD in lieu of LIGHT IT UP BLUE), and the rainbow infinity symbol to represent the greater neurodiversity movement. There has also been a movement to use the gold infinity symbol (because Au is the International Chemical symbol for gold, and A and U are the first two letters in the word AUtism).
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Regardless of the color, here is why the infinity symbol is becoming the preferred visual to represent autism:
  • The infinity symbol stands for autism acceptance (moving away from just autism awareness).
  • The infinity symbol represents that the autism spectrum is not linear...that each autistic individual has endless possibilities and often untapped potential.
  • The infinity symbol does not promote infantilism like the puzzle piece, and can be used across the lifespan.
  • The infinity symbol represents the fact that autism is not a disease, and thus it does not need to be cured. There is nothing to be puzzled about and we are not looking for a "missing" piece. Autistic individuals do not need to be solved like a puzzle...they need to be accepted and celebrated for who they are.

It is important to remember that we must always listen to those who are ACTUALLY AUTISTIC. If an autistic individual finds value in the puzzle piece, then that is their prerogative to use it. 

For me, as an ally to autistic individuals, I will now be using the infinity symbol to show my authentic support and acceptance. As Maya Angelou so beautifully said: "Do the best you can until you know better. Then when you know better, do better." This is me doing better.
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    Cari Ebert, MS, CCC-SLP,  is a pediatric speech-language pathologist who specializes in apraxia, autism and early intervention.

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