I was diagnosed with Asperger’s syndrome in 2002, at the age of 5. You may be thinking to yourself, “That’s not a diagnosis anymore!” “Asperger was a monster!” or “What difference does it make?”. Or you may be someone else with that diagnosis, nodding in understanding for what you think you are about to read.
Changing diagnostic labels matter -- quite a lot, in fact. As a result of changing diagnostic labels, I find myself struggling to fit in not only in the neurotypical world, as one might expect, but the autistic or neurodivergent one as well.
The fact that I was diagnosed with Asperger’s meant that my parents kept me isolated, away from other autistic children and adults -- a decision that, in hindsight, I now see was ableist and autism-phobic, if you will. It was literally phobic (fear-based) -- they were afraid that I would pick up the habits of those around me; nature vs. nurture and all that jazz. As has been proven by my life, they believed incorrectly. I picked up those behaviors all the same, and instead learned that masking was a better option than acknowledging what and who you are, and having pride in it.
I learned that I had to act and appear neurotypical in order to survive in the neurotypical world, and suppress my autistic symptoms and behaviors. I believed I had to stim in a very discreet way, or possibly not stim at all, even when I desperately needed it. I believed that I couldn’t get overwhelmed or shut down in sensory-rich and overwhelming environments -- that it was wrong -- because none of the neurotypical people around me were.
In short, nature won out.
As such, I’ve struggled to take pride in my autistic identity for years and years, and am only just beginning to again. And now we’ve come full circle -- is it autism, or is it Asperger’s? Are they one and the same? Are they so far apart they can’t even be under the same umbrella?
Asperger’s removal from the DSM-5, published in 2013, and its subsequent replacement with pragmatic communication disorder and/or incorporation with autism spectrum disorder has left many without a sense of identity. In addition, now that the diagnosis is no longer recognized, many (myself included) have to be rediagnosed. Diagnosis as an adult is already fraught, and difficult in a busy and hectic adult life. In addition, with diagnostic labels changing, diagnostic criteria are as well, and this only adds to the difficulty of a rediagnosis.
There are also many (like myself) who have struggled with acceptance of their identity and Asperger’s, especially in a neurotypical world. These people, some of whom may very well finally be taking pride in their identity, have had that identity stripped away from them and have to get used to new words, new criteria, and even new ways of referring to themselves.
While I'm a little late to the party, Greta Thunberg is a good example of this concern.
Greta Thunberg, who has been in the news lately, and was named TIME’s 2019 “Person of the Year”, is a good example of this. She’s a Swedish seventeen-year-old girl who has been working hard advocating to help combat climate change. She’s also been diagnosed with Asperger’s Syndrome. When she said just that in one of her speeches, in a language that is not her native one, no less, she was harshly judged, criticized, and discussed online. She was in a situation that was no doubt incredibly stressful -- speaking in front of a large crowd is hard enough for neurotypicals, much less those of us on the spectrum -- and used a term many thought was wrong.
But does it matter if Asperger’s is on the DSM, or matter if people still want to use that terminology in referring to themselves? Some say the usage of “Asperger’s” creates a false binary around functionality and social acceptability -- people diagnosed with Asperger’s are the “higher-functioning” and more “socially acceptable” of people on the autism spectrum. Regardless of the fact that functionality labels are entirely mythical and don’t tell us anything about an individual’s needs, this binary is imposed by the neurotypical world, not us, the individuals diagnosed with Asperger’s ourselves. We are not the ones perpetuating it, and as such, should we really be required to give up terminology with which we’ve grown to identify and in which we've finally grown to take pride?
Does this terminology really matter, when we can all speak about experiences we’ve shared, struggles we all go through, and societal expectations placed on us all?
In a world in which you can be villified and judged for using the wrong terminology, it’s unsurprising that many people with Asperger’s and who are otherwise on the spectrum are afraid to speak up. But if we don’t speak up and share our experiences, not only will this false binary remain in place, it will prevent us, as a unified autistic community made up of incredible, unique individuals, from coming together in solidarity to thrive in a neurotypical world.
See the latest article from CEO Samantha Pierce about building resilient students and educators published in the September issue of Family Times magazine.
Transforming Tragedies: An effort to build resilience to trauma in school
"Everyone experiences distressing events in their lives. You’ve probably heard about trauma, the emotional response to these events. Our emotional reactions to these events can have long term effects on the way we think, make decisions and relate to others. Developing resilience—our ability to cope with stress—makes responding to adversity easier."
I'm a college student going for a degree in social work, and work with NeuroDiversity Consulting to shed light on issues through that lens.
I am also neurodivergent, having been diagnosed with Asperger's Syndrome (and working on a re-diagnosis) in my very early childhood. Most of my life has been spent seeing things through that different -- not wrong or broken, but different -- lens and filter.
I was that girl who would go on and on about particular interests -- some of which changed from year to year -- and devoured books in my spare time. I was the one trying to wrestle in this neurotypical-ruled world with my differences, and with how they changed my outlook on life. That dilemma evolved into my interest in special education and advocacy. Children receiving special education services can benefit from having a staff member in their corner who went through similar struggles. My experiences help me understand, and I care enough to help tailor curriculum and learning methods to meet student needs. I struggled with many elements in my elementary school life. I want to help in any way I can so students don't have to go through that themselves. If I can help even one student, that's worth it for me.
What/who (else) am I? In short, I'm not only a neurodivergent social work student, but a musician, writer, artist, disability advocate, and much more. I'm autistic, but that's not all I am -- it's just the way I see the world.
by Liza Citron
As teachers are going back to school, many might have an autistic or otherwise neurodivergent child in their class -- perhaps for the first time. Educators might reasonably wonder where to begin in tailoring the classroom experience to that child -- connecting to the child as an entirely new experience for the teacher. How different is the autistic experience to the neurotypical one? How does autism affect a child in their formative years? What changes should be made for the child to help them connect to the curriculum and the teacher, and to help them succeed? These are all questions teachers might be asking themselves as the “mad rush” to prepare for the school year comes into full swing.
All these questions may seem daunting to the teacher, especially ones new to their classroom. Everything comes down to paying attention to and carefully observing the child -- and, of course, listening to what they may tell you. Careful observation can tell you what the child’s most significant struggles are, and conversely, what their greatest successes or strengths are or maybe in the future.
As an autistic adult, I don’t personally know the neurotypical experience. I can, however, compare my autistic experience with descriptions from neurotypical friends and family members. My perspective helps provide insight into neurotypical and neurodivergent experiences that impact the classroom.
One of the main differences I have noted is the capacity for sensory input and susceptibility towards over-stimulation. Things neurotypicals might not even notice can be “deafening,” if you will, to an autistic individual -- and can cause either shutdown or meltdown, depending on the situation. As such, the best learning/work environment for many autistic people, and neurotypical people is one with the least sensory stimuli possible. In such a situation, it is easier to maintain concentration, and much easier to lower anxiety levels, both of which provide a more productive mental state.
Another difference to consider, especially with young children, is the theory of mind -- seeing situations from another’s perspective. Theory of mind is an aspect of human behavior and neurology that is important in relationship building and learning. Contrary to what some may think autistic people are not insensitive to what others need or want. However, it can often be difficult for us to see those needs and wants in the context of a situation. Providing an environment for role-play, or anything that requires “characters” can often help develop a person’s understanding of the theory of mind.
Every individual, autistic or not, will have their levels and specifics of needs, struggles, and strengths. The above are just two of the multitude of ways in which the autistic experience can differ from the neurotypical one. Taking the time to learn, understand, and account for these individual aspects allows educators to set themselves and their students up for success in the new school year.
Neurodiversity Rewires Conventional Thinking About Brains
Save the date for this fall's autism resource fair with the Syracuse City School District. Interested vendors can sign up to participate here.
Parent University Fall Conference and Autism Resource Fair
Saturday, October 5, 2019
227 Magnolia St, Syracuse, NY 13204
9:00 AM - 1:30 PM
Join us for the Autism and Mental Health Symposium June 9, 2018 to explore barriers to access to mental healthcare for people on the autism spectrum. Register here.
It’s well established in research literature that people with autism and related disorders have an increased vulnerability to mental health challenges. Despite this fact the mental health resources available to autistic people and their families in their communities are limited. In Onondaga County the clinician to patient ration in mental health is 1 to 202. In that number few are able or willing to meet the mental healthcare needs of autistic people. Families and individuals are left with little or no options for addressing their mental health care needs. We can do better.
Register now for our Autism and Mental Health Symposium to explore the barriers to access. Be part of the solution.
We like to divide people into neat little categories. These categories serve as shorthand for getting to know others. In this case the people being divided up are autistic. People rely a high functioning/low functioning distinction to describe a person’s perceived place on the autism spectrum. High functioning is shorthand for “can pass as not autistic at first glance.” Low functioning is shorthand for “not passing as anything but autistic anytime soon.” These two categories also serve as stand ins for verbal and nonverbal respectively when is comes to communicating with others.
The high/low divide presumes that the autism spectrum is linear. It is not. The autism spectrum is multidimensional. It is as complex as people are. Thus far the best science tells us that autism touches on every aspect of human biology that we know makes us who we are. Autistic can’t be reduced to a linear division of function, but people try anyway.
The linear high/low gradient comes in handy for pitting the different needs of autistic people against each other. A focal point of the divide is communication. An autistic person able to utilize verbal communication is deemed to not have it that bad, not be truly autistic or to be “pretending to be just like those who have incredible difficulty.” Those who do not utilize verbal communication are portrayed in the worst light while at the same being venerated as truly autistic. Such an attitude of placing nonverbal autistic people on a pedestal while dismissing the needs of other autistic people serves only to disenfranchise all autistic people.
With the growth of internet access, smart phones, and the rise of social media autistic people, including many nonverbal autistics, have proven themselves blisteringly articulate with the spoken and written word. They hold nothing back in their criticism of what they’ve endured in the name of addressing their autism At the same time, they offer hope and encouragement to parents of the next generation of autistic people.
Yet the voices of autistic people continue to be set aside. Either because they are perceived as not autistic enough or too autistic to have an opinion of their own. As someone advocating for the respect and dignity of all people with autism this is a disheartening. What are people advocating for if the voices of autistic people aren’t engaged in their communities? Will my children be heard when they speak up for themselves? Or will they be dismissed because the gatekeepers deem them to be not the right kind of autistic?
Comparing autistic people to each other leading to the invalidating of another’s experience is unacceptable. High or low functioning is a measure of how much work a neurotypical person thinks they must do to relate or communicate with an autistic person. Every autistic voice needs to be included in the conversation about autistic people regardless of outside perceptions of a person’s functioning.
We've partnered with several area organizations for an event discussing the effects of adverse childhood experiences (ACEs) in the Syracuse community. There will also be an opportunity to view the film Paper Tigers. Please join us on March 10, 2018 12pm-3:00pm at 501 W Fayette St, Syracuse, NY 13204