Neurodiversity: My Life and My Work
Updated: Aug 20, 2021
For more than a decade, I have focused on children with autism, and what I can do to support them both personally and professionally. However, over the past few months, I have made connections with autistic adults in social media, and my awareness has changed—it’s deeper and more real.
One of the differences, that I have encountered is shown in my first two sentences. In academia, I was taught to use person-first language when discussing disabilities, because a child is more than the disorder that causes them to be different. So, a student with autism, or Mary who has autism, is what I have been using. But there are many autistic adults who feel that their autism is a major part of their identity, and so identity-first language is what they are promoting—Mary is autistic. It is a bit more streamlined, but as a writer, I want my words to personify each person; so, my goal is to use what people who I am addressing are most comfortable with. I like person-first, but that’s just me, at this time.
However, I do like how the autistic adult community stresses that their brain function is a natural way of being and it is not a disease that needs to be cured. Basically, the autistic brain functions differently in social, communication, sensory, attention to details and many other ways; within those differences are gifts that may be hidden. I have latched onto the term neurodiversity which encompasses more than autism—ADHD, dyslexia, learning disorders, and other brain differences—because the work that I am doing may benefit those whose learning and memory functions are different than typical people and may respond as well to my educational techniques, that have been based on those with autism.
An area that I am looking at more closely, is the type of support or interventions that autistic children receive. The history of Applied Behavioral Analysis (ABA) is fraught with controversial practices, many of which have been discontinued. But what is still there for behaviorists, is only focusing on behavior, and not the internal emotional and sensory struggle of the child. I have seen this first-hand and was horrified. Because of unreasonable expectations based only on behavior, many children have learned to mask their autistic self to appear neurotypical, at great cost to their mental health, self-esteem, and general wellbeing. I am closely examining my practices to be sure that negative aspects of ABA are not creeping in. I give children choice which builds agency and find ways to make learning fun.
As we all know—April is Autism Awareness Month. This year, I hung back to take in information instead of posting the pictures of a blue bear that has colorful puzzle piece on its foot or capitalizing on the topic for my business. I love that bear and promoting great toys, but I am learning that for some, it feels traumatic when some organizations raise money to cure or eradicate autism—saying that having a different brain is not ok—instead of supporting the many adults who currently need help with housing, job coaching and living life. I noticed that many autistics on Twitter have negative or downright traumatic feelings during this month. Many say it should be Autism Acceptance Month, because pretty much everyone is aware, and it is more important that autistics be themselves and not have to mask themselves to fit into what typical people think is socially acceptable. For someone to appear neurotypical, it takes a huge amount of mental energy and may cause anxiety to flare up which can lead to an autistic shutdown or a meltdown.
A couple years ago, I was diagnosed with ADHD, but I did not fully understand what that meant for me; I thought I just had a little trouble focusing on tasks that I did not like. Now, I see that it is so much more since I have connected with other adults with ADHD (on that bird app) who have shared in depth how having a neurodiverse brain makes everyday life challenging: low executive function skills—planning and completing tasks (even simple ones), self-regulating emotions—the highs are high and the lows are low, sensory dysfunction, anxiety with ruminating thoughts, debilitating sleep patterns, bouncing between hyper-focusing and having no focus, and living with the stigma of feeling less-than.
Many neurodiverse people get things done and accomplish fantastic goals in life, but now I wonder—at what cost? How hard was it for me to mask my ADHD, especially when I did not now that I have it? How much anxiety came from the pressure to perform when my brain was on the fritz? How many times did failure occupy my mind because I did not complete something that was expected of me or by me? Now, as an #OwnVoices #Neurodiverse mom with neurodiverse children, I understand how difficult it is to be different on the inside but expected to live in a neurotypically-designed world.
We are different… not broken, not less-than; just needing a bit more room to be our authentic selves. I must say—we do make life more interesting.
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--Nancy Roop is a Discovery Toys Play Advisor and publisher at Developmental Texts LLC. After nearly a decade supporting students with autism, she earned a BA in Interdisciplinary Studies from Oakland University where she developed a new book format for neurodiverse kids. The series, Alex & Jordan Explores is in development.
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