How We Talk About Neurodivergency Needs To Change

When neurodivergent people go out into the world and behave as their normal selves, many neurotypicals see this as an opportunity to speak ill of them.

***I am going to preface this with these are my opinions based on research, interviews, and facts derived from peer-reviewed articles and science journals that focus on social sciences and behavioral health. This information is not meant to shame anyone and if you have a differing opinion, I’d love to hear it!***

Here’s the thing about mental health conditions like those on the schizophrenia spectrum and the autism spectrum: When neurotypicals speak about these people as if they are diseased, disorderly, crazy, or disabled we are placing negative labels on these individuals and negating any form of hope these people have of leading what would we deem as a “normal life.” When we deem people with these conditions as “disordered and diseased, or as crazy, unhealthy people, we are not doing anything positively or proactively to help these people succeed. We are setting them up for failure.

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Neurodivergent Expectations

As neurodivergent people go out into the world and behave as their normal selves, which is to struggle with their condition or even thrive despite their , neurotypicals see this as a problem, or as a disorder or disability. If we label neurodivergent people with these words, we are not giving them the opportunity to truly understand what it is to lead a normal life because neurotypicals have already decided that because something is “wrong” with them, they are incapable of living life exactly how a neurotypical person would.

When I see people like @theautismcafe on social media talk about how disheartening, disabling, and “vile” or “evil” these conditions are, it makes me, as a mental health professional, concerned about ways in which they are interacting and working with their children. Describing our loved ones as in need of a cure because of their differently abled brains, we are communicating there is something wrong with them.

Sure, we all want to cure the things that make us different, that are outside of our control, but rather than focusing on how to make differently abled people be more like a neurotypical person, we can work on creating a world that is adaptable for all neurotypes. 

As a child, you were taught how to adapt to differences, and how to adapt to change. You were told that change is hard, but doable. For neurotypical people, however, change is geared toward forcing these people into acting and behaving as a “typical” person would. Which is close to impossible because their brain is wired differently. We cannot change the wiring of the brain for neurodivergent people. We can, however, create a world that supports their differently abled brains and bodies. 

So, my question is, why are we forcing people with differently abled brains to conform to a neurotypical way of life? Why are neurotypicals so convinced that conforming neurodivergent minds to neurotypical ways of life is going to work, or that it’s the right thing to do? 

If the neurotypical individual is more capable of adapting to change and adapting to difficult situations, shouldn’t neurotypicals be the ones conforming to the needs of differently abled people? If it is more difficult for the neurodivergent individuals in this world to work through change and live a more unstructured lifestyle, why are we continuing to require neurodivergent people to adhere to neurotypical lifestyle when we have decades of proof that it is more difficult for neurodivergents than it is for neurotypicals? 

As humans, we are more apt to force the minority to conform to the majority. But when the majority is more “capable of change” and it is easier for them to solve problems and handle stressful situations, why are we making life harder for the neurodivergent groups in this world?

Sure, there are times and places in our world currently where there are groups who are making neurodivergent lives easier who are helping these people live a more stable, joyous life, but we are still faced understanding that if we do not conform to a Neurotypical expectation, we are failing as humans.

Now I want you to imagine what it might be like to live with a differently abled brain. What are some of your understandings and perceptions of differently abled brains? Now, I want you to hold on to those perceptions as I lay out what it feels like to live inside a neurodivergent brain.

Let’s lay down some facts first.

Did you know there are over a dozen neurodivergent conditions in the DSM five?

Neurodivergent is defined as: differing in mental or neurological function from what is typical (frequently used regarding autistic spectrum disorders); not neurotypical. On average, a little over 20% of the world is classified as neurodivergent. It is estimated that 1 in 5 people are neurodivergent and 30-40% of these people are unemployed because of the lack of accommodations and services available to them to help them lead a “typical” lifestyle.  

The following mental health conditions are neurodivergent: 

• Autism spectrum disorder

• ADHD

• ADD

• High functioning anxiety

• Bipolar disorder, both one and two

• Schizophrenia, spectrum disorders

• Obsessive-compulsive disorder

• Epilepsy

• Hyperlexia

• PTSD

• CPTSD

• Sensory processing disorder

• developmental speech disorders;

• dyslexia 

• dysgraphia 

• dyspraxia 

• dyscalculia 

• dysnomia 

• intellectual disability 

• Tourette syndrome

So many of these conditions have the word “disorder “attached to them. They are only considered a disorder because a neurotypical person attached the word disorder because it diverges from the way a typical brain functions. While scientifically correct, I feel associating the word “disorder” infers a negative connotation that there is something inherently “wrong” with the individual diagnosed. Not to mention, there are those who are over diagnosed simply because they do not conform in a “typical” way. 

Now this conversation isn’t a black-and-white distinction between neurodivergency and neurotypicals. Rather, it is a nuanced discussion because we are human beings that deserve nuance in how we are discussed or talked about. This is also a commentary on changing the way we talk about neurodivergent people. Often we discuss neurodivergency in front of those who are neurodivergent as if they are not in the room. This is typically done to autistic individuals.

How We Talk About Neurodivergent People In Front of Neurodivergent People

Let’s take @theautismcafé on Instagram as an example. While I find it troubling that she works for autism speaks, a foundation focused on “curing” autism and classifying it as a disease, as opposed to helping people, embrace the differences of autism, she has a handful of great or interesting things to say about being a mother to autistic children. 

However, there is often where she discusses her son Charlie, as if he can’t understand or hear or comprehend anything she has to say or feel about him being autistic. When we talk about autistic children or family members where they have a problem, or they are a problem or they have a disease or their life is awful or miserable, we take those ideas and internalize them. Then, through our actions and our words, we perform based on those beliefs regarding neurodivergent individuals and children. Then those children and adults absorb the way we have internalized our perception of their autism or mental condition, and they internalize it for themselves as well. 

@theautismcafé talks about how horrible it is to live a life with autism, without actually understanding what it is like to be a neurodivergent person. As a mother to an autistic child myself, I can recognize that there are some definite challenges for being a parent to autistic or differently abled children–even being a partner to someone who’s differently abled is difficult. But that does not give us the right to discuss the difficulty a child or adult is experiencing without actually experiencing it for ourselves. Which, biologically, is impossible because we are not those who are autistic or neurodivergent. I empathize with the fact that being the caregiver for a person with some form of neurodivergency is difficult, but we should not put our own struggles onto our children or loved ones because it is not their fault they are differently abled. It’s no one’s fault, it’s just the way they were created. If we as caregivers want to advocate for change and support in this world, we must help those who are neurotypical understand both perspectives; ours as caregivers and from the mouths of the neurodivergent.  

Coming from the perspective of the differently abled, we can help neurotypicals understand that yes living with a differently abled brain is difficult, sometimes it sucks and is disabling, and makes us feel less than, but it does not mean that we are less than, or that we need to be “cured.”. 

Power Dynamics In Caretaker-Neurodivergent Realtionships

Being neurodivergent or having a neurodivergent condition does not mean that you/they/we are disabled in ways where life cannot be fulfilling. It means neurotypicals need to listen to the neurodivergent and providing the real-life support they need. This even applies to the physically disabled. The key to helping neurodivergent people is to understand the ways they need to live life and the varying forms of support–emotional and physical–neurodivergent people need.

My autistic son often says, “I hate being autistic. It makes everything worse, it makes everything more difficult. I hate it.” If I were to say to him, “you’re right being autistic, sucks and it sucks all the time, there’s nothing you can ever do to change the fact that you’re autistic, just try to do what I do.” He will internalize there’s something wrong with him and lead life with a negative perspective.

The way to approach a conversation with an autistic child who says these sorts of things, and realizes and sees that the world is more challenging for them, is to validate their concerns. So rather than simply agreeing with my son, and not providing him with opportunities to adapt or find support, or saying “being autistic sucks,” I say to him, “you know what you’re right, being autistic or having autism is really hard. The life you live is going to be more challenging than those who are not autistic.

But that does not mean that life is always going to be hard, or that life is always going to suck because of your autism. We can use our autism for good and understand ways we can help make our lives easier and more fulfilling and fun. I am always here for you when you feel like your autism is making life more difficult. I am here to help you make your life a little easier and fun. Autism sucks, but it doesn’t always have to suck.”

The autism café, also known as Eileen Lamb, describes her son’s autism as “severe” or “profound”, which I feel is really just code for severe or some other negative adjective. And while I have experience with individuals who have a more challenging version of autism, labeling it as severe is damaging to children and adults–autistic or not. Whether we think they understand us, they do.

Saying to someone that your autism is severe forces them to create the understanding that there is something wrong with them, and that there will always be something wrong with them. How we should phrase these things to children and adults with autism is that their autism presents extra challenges compared to other children and adults with autism, non-autistics, and other neurodiverse peoples. More challenges equate to struggles in life, but if we look closely at the data presented in the study, Exploring stigma: medical knowledge and the stigmatization of parents of children diagnosed with autism spectrum disorder by David Farrugia, its parents and neurotypical adults who have developed and held strong with their negative stigmas. 

So being even more clear let me ask you this; Who do you think handles the development of the stigmatization of autism and neurodivergency? It’s certainly not the neurodiverse population or those who would be deemed “patients.” In order to understand the development of how stigmatized neurodivergency is, we need to recognize power dynamics between neurodivergent people and the neurotypical.

Wanna Listen and Stop Reading? Listen and Watch Part Two Below

While some neurodivergent conditions result in a significant disability, this does not mean that someone is 100% incapable of caring for themselves–unless they are denied the services and therapies needed to help them develop those skills. Now, who helps the neurodivergent receive services and therapies? Parents. If neurodivergent people cannot drive themselves, who organizes transportation? Parents. Who organizes payment for the neurodiverse? Parents. Who helps neurodivergents gain the knowledge needed to understand their minds? Parents. Who helps neurodivergents cope with their functionality or limitations? Parents who buy services with a mental health specialist. So who holds the power to a neurodivergent person’s success? It’s parents for children under the age of 21. And after the age of 21, it’s partially parents and the neurodivergent adult. Why 21? According to state law and the board of education, those with neurodivergence that delays their ability to learn and become self-sufficient are under the care of their parents, unless otherwise disabled.

Children with developmental disabilities are also given public school access until the age of 21. So there is a clear power dynamic here. Too often have I experienced fellow parents who deny their child has needs, or they say their child has needs but they can’t afford it. My child with autism receives state benefits, and I put the work in making sure he got those benefits so he would have all the opportunities possible available to him. Now, did I put in a lot of work to make that happen? Yes.

As a parent, should I slack off on my child’s needs? No. My child didn’t ask to be here. So it’s my responsibility to make sure he gets what he needs to be successful. That may require me to do a lot of front-end work, but on the back-end, I’ve made sure he’s set for life regarding support services, school, medical, dental, and more. Can life with an autistic present challenges, yeah, but it is unethical for me as the power holder to disallow his needs to be met, or ignore that he has needs just to make my life easier? Life isn’t easy for anyone but the filthy rich. That’s just reality. 

Life is more challenging for the people who are neurodivergent than often their caretakers. That’s the bottom line. But this bottom line doesn’t deny that life is more challenging for neurotypical caretakers, because it is more so than those without children with disabilities or neurodivergence. This power dynamic I’ve described does not give us as parents, or anyone the right to call our children “severely” or “profoundly” autistic–or with any other form of neurodivergency–is not a right, it’s wrong. 

Changing The Language We Use to Talk About Neurodiverse People

The difficulty I have in describing neurodivergent people as “severe” or “mild” is that it puts autism and things like schizophrenia or spectral disorders in a box or on a line. I prefer to look at these things as a color wheel. Not one individual is the same as the next. One person may have more challenges with being autistic than another person who is autistic. That doesn’t mean that the person with more challenges is more “severe.” This person may excel in math and science, and is a complete genius in those areas. While the other autistic person considered “mildly autistic” has more challenges for math and science. In this example, the two autistic people described have unique challenges, yet are still autistic. Having more challenges as an autistic person or mentally ill person does not mean there is something inherently wrong with you or that you are more severe than the next. It simply means you have more challenges, more to overcome, and more to celebrate when you can overcome those challenges–whether you face them alone or with a support system. 

Another way in which children and adults are described is “high functioning” or “low functioning.” Again, we look at these things along a neurotypical baseline of what we consider “normal functioning.” The more “high functioning “a person may be, the closer to “normal” they are considered. The more “low functioning “an individual may be, the further away from “normal” they are. Again, this puts spectrum disorders on a linear grid. There is no linear functionality or area in which a person is closer to “normal” than the other. 

If you are neurodivergent, you are always going to be neurodivergent. Even with medication, even with interventions, even with different therapies, you are always going to be neurodivergent, and there is nothing wrong with that. Especially if we look at the work of Whilst Goffman and David Farrugia. While their research may have some flaws in it regarding the social and societal aspects of neurodivergency, it helps parents, support peoples, and other caregivers understand that there are power dynamics keeping neurodivergents down, needlessly. 

Businesses and not-for-profits like autism speaks, and those that support it, use language to speak about the autism community and neurodivergency, as if it is a disease. They would like for you to think anything that falls outside the lines of being “normal” is a problem or a disease. I am here to tell you it is not. 

Does being neurodivergent mean that life is more challenging for us? Absolutely. But why is that? It is because of the neurotypical expectations placed on people who have different functioning brains and the power dynamics I previously pointed out. If we lived in a world that could accommodate the distinct challenges a person experiences in their life, we could live much more harmonious. 

In a study by Laurant Mottron, Michelle Dawson, Isabelle Soulieres, Benedicte Hubert, and Jack Burack, entitled Enhanced Perceptual Functioning in Autism…, the authors describe the advanced functioning of any autistic’s brain and how they perceive the world around them. We know from this study that autistics and neurodivergents alike can see, hear, and understand what is being said about them, to them, etc. they may not communicate it in the same way neurotypicals can, but they hear it. 

Coming back to where I was making previously about how we describe spectrum disorders or spectrum perspectives on neurodivergency, to deem someone as a “severely” ill/autistic person compared to someone who is “mildly” mentally ill/autistic is just wrong. And while I understand that Eileen Lamb and some others who follow her disagree with how neurodivergents describe themselves and others in the neurodivergent realm, I do not agree with the way they speak to or about neurodivergent individuals. Sure, Eileen’s account is about her struggles, but it’s also negatively speaking about the larger neurodivergent community and promoting a negative perspective on neurodivergency. It’s an exploitation of her narrow view on autism influenced by nonprofits who speak about autism as a disease. Which it isn’t.  

If we truly want to understand what it is like to live within a neurodivergent mind, we must speak to, and learn from those who are neurodivergent–not the Neurotypicals caring for neurodivergents, or those who study neurodivergent people in a lab setting or a clinical setting. Not that, or discount any of the valuable information Neurotypical individuals have been able to share with the world, but again, it is one narrow perspective from a “normal” functioning adult.

So when you go out into the world or on social media, and you hear different perspectives of neurodivergent individuals, I invite you to listen to them and absorb the message that they are sharing with you by watching Part 2 of the video. The video below AUTOMATICALLY starts at the section where you’ll hear from other neurodiverse people.

Learn more from: @meltedgummiz, @somethingserena, @kaelynn_vp, and @lovingleafy and @a_different_spectrum on their TikTok and Instagram profiles. 

Neurodivergent people don’t like being categorized as “severe”, nor do they appreciate being deemed “high functioning” or “low functioning” either. I recognize that there is a small percentage of neurodivergent individuals who are fine with the terms, but it doesn’t mean you get to describe someone as severely mentally ill or severely autistic.

Sure, an autistic person will say their autism is not their superpower, that autism causes challenges in their life, that autism makes their life challenging as a whole. But using that singular perspective as the whole basis for what it is like to be autistic, is wrong, because as with many things in life, living with mental illness or autism or schizophrenia, or a neurodivergent condition is not to mean that you are living a life of horribleness or despair. Neurodivergent people are often better at finding joy in life. They are often better at finding little things to appreciate in life the most Neurotypicals cannot see.

So while I can sit here and validate that my son says being autistic sucks and agreeing with him that yes, being autistic sucks, it makes things challenging. I can also help him see the brighter side. As caregivers and parents, you can validate the bad and the good because that is what life is–a balance of bad and good. 

Helping our mentally ill and neurodivergent friends, family, and loved ones understand that the good comes with the bad and the bad comes with the good is the way we should approach mental health. It is nuanced; It is not yes or no; It is not black or white; It is nuanced; It is a spectrum. It is a color wheel where everyone has a different hue or shade. It is the responsibility of neurotypical individuals to empower the differently abled to help them define their color and allow them to shine as the brightest version of themselves possible. We must cease and desist using language like “high functioning,” “severe,” and “profound,” to describe someone’s mental illness or neurodivergency, because that dims the light of so many people living with a differently abled brain.

We can validate the challenges of being a caregiver to neurodivergents while also equally validating the very personal experiences of neurodivergent people. To end with, to put negative language into a person’s diagnosis, is to disempower their potential as a human. It leads to them describing themselves negatively and encourages them to only look at their negative qualities and dismiss their positive ones. So while autism and neurodivergency may not be someone’s superpower, it is something a neurodivergent person can take power from to shine brightly.

I hope you take time today to find the power to shine brightly and empower the disadvantaged. See you next time!

Resources

Journal of Autism and Developmental Disorders, Vol. 36, No. 1, January 2006 (2006) DOI 10.1007/s10803-005-0040-7 Published Online: February 2, 2006 https://eds-p-ebscohost-com.lopes.idm.oclc.org/eds/pdfviewer/pdfviewer?vid=2&sid=56a460bf-6c6b-4701-8aee-078ca8bc2ef2%40redis 

Farrugia, D. (2009). Exploring stigma: medical knowledge and the stigmatisation of parents of children diagnosed with autism spectrum disorder. Sociology of Health & Illness, 31: 1011-1027. https://doi.org/10.1111/j.1467-9566.2009.01174.x

Jaarsma, P., & Welin, S. (2012). Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement. Health Care Analysis, 20(1), 20–30. https://doi-org.lopes.idm.oclc.org/10.1007/s10728-011-0169-9