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Peer Support:

Neurodivergence in Peer Spaces Part 1: What You Should Know 

By Jay Culkin, MA, YPA-C, NYCPS-P, Youth Training Coordinator for Families Together New York State 

In recent years, the term “neurodivergence” has become a term more popular in mental health and related fields. Neurodivergence encompasses many diagnoses that are often given through the DSM, but the most common ones that we think about are Autism and ADHD. There are also disorders, such as Social Communication Disorder, Sensory Processing Disorder, and other related disorders that may be under the “neurodiversity” umbrella.  

In 2013, with the release of the DSM-5, the diagnoses of Autism, Aspergers Syndrome, PDD-NOS, and related diagnoses were combined into “Autism Spectrum Disorder” also known as ASD. Over the years The distinction between ADD (Attention Deficit Disorder) and ADHD (Attention Deficit Hyperactivity Disorder) have changed. Now, the disorders are grouped into just ADHD and then categorized by their “presentation.” These changes over the years shows the desire for people to understand neurodivergence and how it impacts behavior and mental health.  

Knowing the ways that neurodivergent individuals perceive the world, function in their everyday lives, and what the neurodivergent community has made a consensus on can be a big help in supporting your neurodivergent peer staff. 

Here are a few words to know before we proceed:  

Neurotypical – Someone without neurodivergent diagnoses, such as autism, ADHD, or related disorders. People with mental health challenges or mental health disorders may be neurotypical.  

Masking – A neurodivergent person’s ability to present as a higher functioning level despite their support needs. Masking often comes from social pressure. Masking is unhealthy and often takes a toll on physical health.  

Self-Diagnosis – When an individual assumes they have a specific neurodivergent diagnosis due to the symptoms they’re experiencing. Contrary to popular belief, these individuals often want a proper and official evaluation but often face barriers to getting an evaluation completed (affordability, insurance, unsupportive family, etc.) Therefore, these individuals often use “self-diagnosis” to affirm and validate their frustrations as well as trying to educate themselves on how to get their needs met and alleviate the symptoms. “Self-Diagnosis” acts as a placeholder until an official diagnosis is obtained.  

Issues in Communities of Neurodiversity 

  1. Functioning Labels 

In reference to neurodivergent people, autistic people especially, we often hear the terms “high-functioning” and “low-functioning.” The labels end up only serving one purpose: to determine the level of visible productivity in real time. These labels take away from the first-hand experience of a neurodivergent person, the severity of the symptoms. Using functioning labels can lead to burn-out, premature resignation, poor work-life balance, lack of support, loss of agency, and unrecognized potential or fulfillment. Many in the neurodivergent community have chosen to use terms such as “high support needs” and “low support needs.” This focuses on a neurodivergent person’s capacity to comfortably and healthily go about their day rather than measuring functioning from an outside perspective. This also allows neurodivergent people to customize how they express their needs in settings where it is appropriate. For example: “I have lower social support needs, but I have higher support needs when it comes to filtering out sensory input and output.”  

  1. The Support vs. Agency Argument  

As mentioned in the first point, functioning labels affect how we see support and agency. For many neurodivergent people, they feel they must sacrifice one for the other. For example, seeking out supportive services may require a person to say that they struggle to “function,” thereby labeling themselves as incapable and barring them from holding a fulfilling career for fear of losing their benefits. As another example, staying in graduate school may pressure a neurodivergent person to hide their struggles to prevent them from being seen as incapable of the workload or receiving micro-aggressions based on their diagnosis.   

  1. The Person-first vs. Identity-first Argument 

Another age-old debate is whether person-first language or identity-first language is most sensitive to the community at large. There is no one answer, but here’s a question to ask yourself when you consider this debate: Is this part of a whole individual integral to their experience? This varies. For many autistic people their autism informs every part of how they navigate the world. Therefore, they are autistic people. For others, they prefer to blend in and be seen for other parts of their identity.  

For Further Reading…   

Autistic Self-Advocacy Network (ASAN) – https://autisticadvocacy.org/  

Association for Autism and Neurodiversity (AANE) – https://aane.org/  

Autistic Women & Non-Binary Network (AWN) – https://awnnetwork.org/  

ADDitude Magazine – https://www.additudemag.com/  

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD) – https://chadd.org/  

Job Accommodation Network (JAN) – https://askjan.org/