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OUR WORDS MATTER

Choosing our words carefully is crucial in the world of neurodiversity because language plays a significant role in shaping perceptions, attitudes, and inclusivity. Please consider the impact of words in the following realms:

Respect and Dignity:

Using respectful and inclusive language demonstrates a commitment to treating individuals with neurodivergent conditions with dignity. It helps avoid stigmatization and fosters a culture of understanding and acceptance.

Avoiding Stigmatization:

The way we talk about neurodivergent conditions can either challenge or reinforce societal stereotypes. Careless language can perpetuate stigma, stereotypes, and negative perceptions, contributing to a less inclusive environment.

Empowerment and Positive Framing:

Positive and empowering language can contribute to a more inclusive and supportive environment. Using words that focus on strengths, abilities, and individual talents helps empower neurodivergent individuals and promotes a strengths-based perspective.

Building Understanding:

Clear and precise language aids in building understanding among individuals who may not be familiar with neurodiversity. It helps to educate and raise awareness, fostering a more inclusive and informed community.

Inclusive Communication:

Thoughtful language choices contribute to creating an inclusive communication style. This is important in educational settings, workplaces, and social environments where neurodivergent individuals may be present.

Legal and Policy Implications:

In some cases, specific legal and policy frameworks may be in place to ensure the rights and accommodations for neurodivergent individuals. Using accurate and respectful language aligns with these frameworks and promotes compliance with legal standards.

 
WHAT DOES THE WORD "NORMAL" MEAN?

 

It is easy to get trapped in the idea that my spouse is not "normal" or my marriage is not "normal".  But what is normal anyway?

The illusory nature of normal is captured in the following quote:

 

“I wonder if we recognize the irony of telling people to act normal, because to "act" is to perform a role that isn’t real.
 

And I wonder if we truly understand what it does to a human being to tell them to pretend to be someone or something they are not, and how this demand requires people to repress, efface, and cover up who they really are.”

― Jonathan Mooney, Normal Sucks: How to Live, Learn, and Thrive, Outside the Lines

 

FROM "NORMAL" TO ACCEPTANCE

 

With the help of neurodiverse-sensitive therapy, most couples realize that "abnormality" is not the problem; rather, the difficulty is rooted in trying to fit into their concept of what a "normal" couple should look like. 

 

This shift away from "normal" can free a couple from the shame that comes from the message that one or both of them is the problem. If we can reorient how we view diversity, abilities, and disabilities, each partner can begin to feel accepted for who they are;  paradoxically, this acceptance makes room for real change.

WHAT IS NEURODIVERSITY?

Neurodiversity refers to the idea that the human brain can function in a wide range of different ways. These variations should be recognized and respected as a natural part of human diversity. The most common conditions people think of as neurodiversity are:

  • autism (1-2% of the population), 

  • ADHD (4-5% of the population), and

  • dyslexia (the most common type of neurodiversity).

 

But it also can include:
 

  • Tourette's,

  • dyspraxia,

  • synesthesia,

  • dyscalculia,

  • Down syndrome,

  • epilepsy,

  • traumatic brain injury, and

  • chronic mental health illnesses such as bipolar disorder, obsessive-compulsive disorder, borderline personality disorder, anxiety, and depression.

At some point, we recognize that all brains are different so rather than thinking one way is good and another bad, let's understand the differences and how to work with them.

Social Model

It's important to note that neurodiversity is not a medical model, but rather a social model that recognizes the diversity of human brains and how they function. This means that neurodiversity is not about "fixing" or "curing" people, but rather about creating inclusive and accommodating environments that support each person's unique strengths and abilities.

Some of the key principles of neurodiversity include:
 

  • Rather than viewing autism and other disorders as unfortunate errors or to be corrected, we should consider these conditions as treasured parts of the genetic legacy of humanity,

  • We work to recognize the value and contributions of neurodivergent individuals to the development of culture, society and technology,

  • Different individuals may have different experiences and needs,

  • There is no one-size-fits-all approach to supporting neurodiversity,

  • We have the opportunity to challenge negative stereotypes and discrimination, and

  • We can set a goal of creating inclusive and accessible environments for all.

OUR TERMINOLOGY

Identity-first versus Person-first language

Since 1994, the psychology profession has used the term "Asperger's Syndrome" (AS) to describe a specific group of people with neurological differences that impact social interactions, how the world is experienced, and verbal and nonverbal communication. See below for background on Asperger / Nazi controversy.

In 2013, the diagnostic criteria changed and AS became part of a high-functioning autism (Autism Spectrum Disorder or ASD). 

 

Our therapists and coaches use identity-first language rather than person-first language. To illustrate:

 

  • Identity-first language:

    • Refers to our neurodiverse clients as Autism Spectrum (AS) partner, autistic partner, or Aspie (based on former Asperger's terminology). 
       

    • PRO: Suggests that autism is a core part of a person's identity (like being a Canadian) with all the strengths and weaknesses that come with that identity and implies that you are OK with having autism as the core of who you are. This is a clearer path to a more positive and realistic identity for many.
       

    • CON: Some people don't like to be defined this way.
       

    • Quote:

      • Autism isn't something a person has, or a shell that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion and encounter - every aspect of existence. It is not possible to separate the autism from the person – and if it were possible, the person you'd have left would not be the same person you started with. 

Jim Sinclair​

  • Person-first language:

    • Refers to clients as the partner with autism or the spouse on the spectrum.
       

    • PRO: You are not only your autistic symptoms. Autism is a modifier; it is not what defines you.
       

    • CON: The assumption usually is that one's autism is a burden that gets tacked onto a person (like a person who is saddled with a disease). This ignores the many strengths of being on the spectrum.

Although our team usually uses identity-first language, we understand the different reasons for both approaches and will accommodate whichever you are most comfortable with.

Neurodiverse versus Neurodivergent

Often, the word 'neurodiverse' is used interchangeably with 'neurodivergent'. However, if considered carefully, an individual person technically is not neurodiverse.

 

The term 'diverse' means 'varied,' so while a group of people with different neurotypes can be considered neurodiverse, an individual is either neurotypical or neurodivergent.

Since a couple is made up of two people, the term neurodiverse is a better fit. 

Autism Spectrum Difference  >  Disorder

Although the psychology profession (and we used it above) uses the term "Autism Spectrum Disorder (ASD)," we much prefer "Autism Spectrum DIFFERENCE."

Considering all the strengths and weaknesses, our clients are no more "disordered" than others. In other words, there is no 'normal'; rather, there are different neurotypes, some more prevalent/common than others.

Allistic vs. Neurotypical

"Allistic" and "neurotypical" are terms used in the autistic community to describe people not on the autism spectrum. While the terms are often used interchangeably, they can have slightly different connotations.
 

The term "neurotypical":

  • is used to describe individuals who have typical neurological development and functioning, meaning they do not have any conditions or disorders that affect their neurological development or processing.
     

  • is often used in contrast to "neurodivergent," which refers to individuals with atypical neurological development or functioning, such as autism, ADHD, or dyslexia.
     

The term "allistic" is:
 

  • a way to refer to individuals who do not have autism. It is important to recognize that many people without autism may still have other conditions that affect their neurological development or functioning, such as ADHD, dyslexia, or anxiety disorders. So, while "allistic" refers specifically to individuals without autism, it does not necessarily mean they do not have any other neurodivergent traits or experiences.
     

  • is used to acknowledge the difference between autistic and non-autistic individuals, without pathologizing or stigmatizing either group.
     

Nazi Controversy Surrounding Hans Asperger

Hans Asperger was an Austrian pediatrician and medical researcher widely known for his work on autism spectrum disorder. However, there has been controversy regarding Asperger's involvement with the Nazi regime during World War II.
 

Asperger was a member of the Nazi Party and worked in Vienna during the 1930s and 1940s, a time when eugenics was a prevalent ideology in Europe. Asperger is said to have collaborated with the Nazi regime by referring children with disabilities to the Am Spiegelgrund clinic, a facility that conducted forced euthanasia on children deemed "unworthy of life" under the Nazi euthanasia program.
 

In 2018, a study by historian Herwig Czech revealed evidence that Asperger actively participated in the Nazi regime's euthanasia program and was involved in transferring disabled children to the Spiegelgrund clinic. Czech's findings contradict Asperger's previous reputation as a defender of autistic children during the Nazi era.
 

The controversy surrounding Asperger's involvement with the Nazi regime has sparked a debate among scholars and professionals specializing in autism spectrum disorder. Some argue that Asperger's work on autism should be judged solely on its scientific merit. In contrast, others contend that his collaboration with the Nazi regime is inseparable from his scientific contributions.
 

Given the controversy, we avoid the use of Asperger's but respect a clients' wishes if they prefer that term.

Cassandra Syndrome

The concept of the Cassandra syndrome in psychology can be relevant to partners of individuals with autism, particularly if the partner repeatedly expresses concerns or predictions about negative outcomes related to their partner's condition but feels ignored or dismissed by others.
 

Partners of individuals with autism may have unique insights and experiences related to their loved one's behavior and may notice patterns or potential issues that others may not recognize. However, they may also encounter a lack of understanding or support from others who are not as familiar with the condition or who may have different perspectives.
 

This can create a sense of frustration and isolation for partners, who may feel like they are not being heard or validated. They may also struggle with balancing their needs and concerns with those of their partner, which can create a sense of cognitive dissonance or conflicting emotions.
 

While the Cassandra syndrome is not an official diagnosis or recognized psychological term, feeling unheard or dismissed despite having valid concerns can be a deeply challenging experience for partners of individuals with autism.

 

It's important for partners to seek support and understanding from others who can relate to their experiences and to communicate their concerns in a way that can be heard and understood by others. You can get this kind of support at Believing Cassandra:
 

www.believing-cassandra.com

Autism and Gender

The prevalence of individuals with autism who identify as LGBTQIA+ is not well established due to limited research on this topic. Some studies suggest that individuals with autism may be more likely to identify as LGBTQIA+ than the general population, while others do not show a significant difference.
 

For example, a study published in the Journal of Autism and Developmental Disorders in 2020 found that autistic individuals were more likely to identify as non-heterosexual compared to non-autistic individuals. Specifically, 16.1% of autistic individuals in the study identified as non-heterosexual, compared to 5.9% of non-autistic individuals.

Furthermore, a study published in the Journal of Autism and Developmental Disorders in 2017 found that there was no significant difference in the sexual orientation or gender identity of autistic and non-autistic individuals.
 

Another study published in the journal Autism in 2016 found that autistic individuals were more likely to identify as a sexual minority than non-autistic individuals. Specifically, the study found that 8.6% of autistic individuals identified as a sexual minority, compared to 5.5% of non-autistic individuals.
 

It is important to note that the samples in these studies were relatively small and may not be representative of the broader population. Additionally, sexual orientation and gender identity are complex and personal topics that may not be fully captured by survey questions. Therefore, further research is needed to better understand the relationship between autism and LGBTQIA+ identities.

Please know that our team is fully committed to providing an affirmative space for people who identify as LGBTQIA+

Disability

The term "disabled" can have different meanings and connotations, depending on the context and the perspective from which it is used. In general, the term refers to a condition or impairment that limits a person's ability to perform certain activities or participate in certain aspects of society.
 

Whether or not to use the term "disabled" to describe autistic people is a matter of personal preference and perspective.

 

Pro:

  • Some autistic individuals prefer to identify as disabled, as they believe it accurately reflects the challenges they face and the accommodations they may need.

 

Con:

  • Others believe the word disabled over-emphasizes deficits over strengths and may prefer to use other terms, such as "neurodivergent" or "differently abled," which emphasize their unique abilities and strengths.

Ultimately, it is important to respect individuals' preferences and use language that they feel accurately reflects their experiences and identity.

High & Low Functioning

The terms "high functioning autism" and "low functioning autism" are often used to describe individuals on the autism spectrum who are perceived to have more or less significant challenges or abilities, especially in terms of intellectual capability, language skills, and the ability to independently perform daily activities. However, the use of these terms is increasingly considered problematic and ableist for several reasons:

1. Over-Simplification:

Autism is a highly complex and heterogeneous condition, with individuals exhibiting a wide range of strengths, challenges, and needs. The terms "high functioning" and "low functioning" oversimplify this complexity and reduce an individual's entire experience and identity to a binary categorization based on perceived abilities.

2. Misleading Representations:

The label "high functioning" can mask the significant challenges and support needs that an individual may have. It can lead to underestimating the difficulties they face, including sensory sensitivities, social and communication challenges, and mental health issues. Conversely, labeling someone as "low functioning" can underestimate their capabilities and potential, leading to low expectations and limited opportunities for growth and participation in society.

3. Ableism:

Ableism is discrimination or social prejudice against people with disabilities, favoring individuals who are not disabled. Using terms like "high" and "low functioning" contributes to ableist narratives by implying a hierarchy of worth or value based on perceived productivity or independence. It reinforces the idea that certain abilities are more valuable or desirable than others and that people who require more support are somehow less than those who are more independent.

4. Impact on Identity and Self-Esteem:

These labels can have a profound impact on how individuals see themselves and how they are perceived by others. Being labeled as "low functioning" can lead to stigma, discrimination, and internalized ableism, whereas being labeled as "high functioning" can lead to unrealistic expectations and pressure to conform to neurotypical standards.

5. Shift Towards Spectrum Understanding:

The autism community and many professionals advocate for moving away from functioning labels towards a more nuanced understanding of autism as a spectrum, where each individual's strengths and challenges are recognized and supported. The emphasis is on understanding each person's unique profile, including their needs, preferences, and abilities, rather than categorizing them into broad and often misleading categories.

The conversation around autism and functioning labels reflects a broader shift towards a more inclusive and respectful approach to neurodiversity, emphasizing the importance of respecting each individual's autonomy, strengths, and challenges, rather than applying labels that can limit understanding and support.

What is Normal?
Acceptance > Normal
Neurodiversity
Identity-First
Difference > Disorder
Diverse vs Divergent
Allistic vs. Neurotypical
Social Model
Asperger & Nazis
Cassandra Syndrome
Autism & Gender
Disability
Level of Function
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