Trashing Old Stories
It's April, let's talk about autism
I started this piece and put it down a couple of times. I wanted to get it right but I have come to recognize it’s a crumb to a much larger layer cake. There is so much to talk about, too much for just one or even ten posts. So I will write one crumb at a time and it will be imperfect. I am going to make mistakes but that isn’t a good enough reason not to try.
This is the first piece in the series—Neurodivergent Notes. This is for all, not just those who are neurodivergent or love someone who is. We need all of the stories, we need it now more than ever. I will always feature neurodivergent voices as a part of these pieces. If you would like to collaborate—message me and let’s tell stories together.
Stories play a role in our actions, thoughts, identity and feelings of connection. They can both limit and expand. They can serve you or interfere in your well-being. Stories can be individual or collective. They are everywhere and influence all of us. It’s time for some stories.
The traveler
There is a traveler who has no stamps in their passport, no souvenirs to display from their adventures and no world map with pins identifying cities conquered. And yet this traveler spends every day somewhere that the language, rules and customs are foreign. The traveler uses great effort to navigate their surroundings everyday. This daily traveler does not receive the esteem reserved for admired adventurers. Their destinations are mundane—a school desk, a busy grocery store, a doctor’s appointment or a playground. Ordinary places—yes, but they require the extraordinary for the traveler and their travel companions. What tales would this traveler share if we asked?
Another story found
A hall closet has been transformed into my office and all of my books were joyfully condensed into one place recently. A problematic book was discovered in this process. This book had a familiar but unhelpful story about right and wrong.
I’ve written before about right/wrong dichotomies in parenting but this was not about parenting, it was about social skills training. This particular book would tell the traveler from the first story to work hard to “fit in” and be like those around them. It would tell the traveler that their way of being is not okay and should be changed or hidden. It would tell the traveler that they are less and those around them are better.
Social skills
The American Psychological Association Dictionary defines social skills as:
a set of learned abilities that enable an individual to interact competently and appropriately in a given social context. The most commonly identified social skills in Western cultures include assertiveness, coping, communication and friendship-making skills, interpersonal problem solving, and the ability to regulate one’s cognitions, feelings, and behavior.
It is true that people may receive support around social skills for a number of reasons and there different pathways for this that can be helpful, respectful and valuable. The book I discovered on my bookshelf is not this. This book is social skills training for neurodivergent children and is well over a decade old, its stance is far from neurodiversity-affirming. This book was acquired at some point as part of my training to become a psychologist. I never used this particular text in practice. Skimming the pages unfair assumptions and painful messages ripple jumped out immediately. Yes, it is an old text and views are shifting but it is a story that still has hold today.
Dr. Debra Brause explored the topic of social skills training in a Psychology Today blog post, Should Autistic Children be “Trained” to Socialize?
“Most social skills programs are designed to teach neurotypical communication, thus encouraging “masking,” or suppressing one’s autistic traits. This modality further empowers the dominant culture to dictate the “correct” way to be. These programs make assumptions about “appropriate” and “inappropriate” behavior, often prioritizing eye contact, which can be overstimulating and even painful for autistic people and makes it difficult to take in auditory information.”
The “correct” way is often seen as the solution to “problems”. Recently,
of Readable Moments interviewed me about representation of neurodivergent characters in picture books. In response to her question about how good representation of neurodiversity should look I shared several areas that we can do better on, including the “problems” narrative:“Unfortunately, a disproportionate amount of the representation in kids’ books about neurodiversity is problem-focused and paired with “solutions”. If you find out that your child is autistic or ADHD and you or they go to search for books, you are hit with books about problems and the need to change something is typically the plot. This message communicates that your difference means there is something wrong. It’s difficult to support your child in embracing their identity when books refer to it as a “problem.”
You can find the rest of the interview along with Sri’s picture book recommendations here.
The story of wrongness, it’s not unique to neurodivergence, but there is a long and lasting history here. Many families and providers made choices within the context of the beliefs shaped by history, culture and systems. People most likely did and do the best with what they have at the time AND we can still recognize the impact. Shaping others into molds not made for them means we lose parts along the way and these are losses with lasting outcomes. As we move towards more neurodiversity-affirming paradigms we are appropriately being told by autistic adults that we have gotten it wrong and it’s time to listen.
“Respect your child. Do not do to your Autistic child what you would not do to a typically developing child. Your Autistic child is not in need of fixing. They are in need of acceptance and understanding. Your child only gets one childhood. Remember that. Therapies that value compliance and normalcy or sameness amongst peers are not respectful of your child’s dignity, individuality and autonomy. They are setting the stage for how others are allowed to treat your child. If you value compliance over autonomy, your child will likely learn to be compliant and more vulnerable.”
-Lei Wiley-Mydske
Change the World, Not Your Child
Do we throw social skills out the window?
Not exactly. We need to address the goals and intentions around social skills training. Dr. Megan Anna Neff is an AuDHD psychologist and author of Self-Care for Autistic People. On their website, Neurodivergent Insights, she discusses a shift in perspective:
“I believe social skills training can help reduce anxiety and stress. However, I think it is vital to consider the goal of social skills training.
Social skills are NOT about learning how to communicate “appropriately” or in the “correct way.” Social skills are teaching you how to communicate with non-Autistic people. Consider this as similar to when you are learning a second language. When learning allistic social skills, you are learning the language of another cultural group. Personally, I wish “social skills training” was called “Allistic Communication Training.””
Note: Allistic means not on the autism spectrum.
A shift towards a cross-cultural approach means that we no longer focus on conformity and focus on how to support autistic individuals being safe and effective in navigating their environment.
“…you are not learning how to communicate correctly. You are learning a second language to help you move through the world more easily.”
Dr. Megan Anna Neff
It’s April
The month of April is Autism Awareness month. It’s complicated. Awareness months have good intentions and yet, they historically have had incomplete stories. For too long, the voices of autistic individuals have not been represented in a month meant to increase awareness about them. The focus has been directed on grief, struggle, fundraising efforts not focused on quality of life but instead on research focused on prevention or cure. Some autistic adults and families are reclaiming the month as Autism Acceptance month. I support this and recognize there is still a need for awareness. The kind of awareness that is the starting point of a journey, not the destination. It’s others’ turn to be the travelers. The organization Autism Level UP! has a very helpful way of identifying where someone lands in where they are in this journey:
Awareness: You've heard of Autism. Maybe you know someone who is autistic. You may even know some of the diagnostic criteria and typical forms of "support" offered to autistic people…but you're wondering why this site isn't blue and full of puzzle pieces and how we could dare call them "autistic people."
Acceptance: You embrace Autistic people as part of your community. You realize that your preconceived notions about autism derived from text books and public awareness campaigns are limited and likely wrong.
Appreciation: Informed by Autistic people, you strive to understand the reality of autism; that is the strengths AND challenges and the true range of diversity within the Autistic community.
Empowerment: You support, follow and let Autistic people lead. You strive to arm Autistic people with the knowledge, tools and strategies to navigate the world as they are.
Advocacy: You are committed to being an ally to Autistic people. You are responsive to the priorities of the Autistic community and you work to change the world in ways that are meaningful to them.
(from Autism Level UP!’s website)
Take a moment to consider where you are? You have to start somewhere. We all need to start. Listen to autistic voices. Be open and expect to be uncomfortable. Mistakes are inevitable. I thought I knew many things and I was wrong. I am willing to put old stories in the trash, so I have space to learn new ones.
I am so lucky to have a traveler. My traveler tells me tales of this world in a whole new way. And it’s made my world bigger, brighter and so much more vibrant.
More stories from others
From
in her article, Already Whole-an essay on “treating” autism“It is exhausting and hard and, much like feminist movements need the active participation and understanding of men, we desperately need more neurotypicals to take the time to hear our words and see our difference as just that. Because we are already healed. We are already whole. And we are not a disease to be cured but a group of people in desperate need of acknowledgment and understanding.”
The Uniquely Human Podcast is hosted by Barry Prizant, Ph.D, CCC-SLP and Dave Finch. I could not pick a representative episode because there are so many beautiful stories told on this podcast.
“Uniquely Human: The Podcast expands the conversation on autism and neurodiversity by amplifying the voices of autistic individuals and thought leaders in providing insightful, cutting-edge and practical information about the autistic experience.”
“Stories make the best teachers. I am not here to convince you of our humanity. I am here to tell you that we are already here.”
For the month of April, Tiffany has been using storytelling to capture the meaning of this month for herself and her family. Please check out her Substack, Fidgets and Fries, for more.
For more information on advocacy efforts, you can check out the website of the Autistic Self Advocacy Network (ASAN). The Autistic Self Advocacy Network’s mission is:
“The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!”
Thank you for using a wonderful analogy of a traveler —one that anyone can understand and “get.” I’ve learned so much from our interview and the insights you shared today. I think I have a lot of learning to do and I am so glad there are so many great resources (you being one of them) available to me!
Awareness, acceptance, appreciation, empowerment, advocacy. I didn't realize that the process we went through when our girls were diagnosed with ADHD had a format, but that was it. Thanks for the framework. I've noted it for my reflections!