Autism Interview #76: Terra Vance on Functioning Labels, Employment, and Diversity

Terra Vance is an industrial and organizational psychology consultant and the proprietor of Acumen Consulting, LLC. She specializes in diversity, inclusion, multiculturalism, and poverty dynamics. She is also the author of the Unapologetically Aspie blog on PsychCentral.com and founder of The Aspergian, a collective for autistic voices, a showcase for autistic talent, and a directory of resources to assist NTs and NDs with navigating autism and thriving with it.  This week she shared some autism advocacy tips as well as her experience leading diversity initiatives as a business consultant.

Can you describe a little bit about yourself? (e.g. Where are you from? How did you become involved in your current line of work? What are you passionate about?) 

For thirteen years, I was a secondary English teacher.  My students loved me, but I often found myself at odds with the faculty.  I just could feel that I was different, even if I was philosophically aligned with my colleagues.  My solutions were too abstract, or not abstract enough, and I felt like more of an activist than an educator.  I was mostly discouraged by disparities in the kind of education students from marginalized groups were getting as compared to their peers of more privilege.  The district was invested, in a genuine way, but the valuable initiatives they were implementing were failing to have impact.

So, I wanted to find a way to address those disparities at the systemic level.  That’s when I decided to go back to grad school for a degree in industrial and organizational psychology and specialize in inclusion, diversity, multiculturalism, and poverty dynamics.  From there, I left education and established a consulting agency to help businesses implement, manage, adapt, and sustain change initiatives which actually achieved the goals of the programs.

Discuss your growing understanding/acceptance of your diagnosis. How did you feel about having a diagnosis and how have you learned to adopt a positive autistic identity?

For years, I had suspected that my natural personality just gelled with autism because I was quirky, oriented to analysis and logic, felt dislodged from the social climate, and was more driven by “what made sense” as opposed to “just what people do.”  I had always rejected traditions and customs that seemed meaningless, but I didn’t suspect that I had autism because the literature about it wasn’t fair.  Even after working in education for so many years, working in a clinical setting with people on the spectrum, marrying a man with Asperger’s, and obtaining a graduate degree in psychology, I didn’t realize it until a friend pointed out to me that I fit the female profile of an aspie.

I was immediately suffused with relief.  It was like everything made sense to me, and I embraced the label. I had already known that I had all these traits, but now I had a community with open arms ready to accept me and embrace those parts of me which were at odds with society.  My perception shifted from finding myself fundamentally flawed to embracing my neurotype as just “fundamentally rare.”  I have always had a profound desire to share what I have with the world in some positive way, and the diagnosis just caused all the disparate parts of my identity and my vision to shift into focus.

I really enjoy reading your Unapologetically Aspie blog. In particular, your recent article collecting quotes about how autistic individuals feel about functioning labels was especially powerful. Why do you think NTs want to hold onto these labels? Do you think ableism plays a role here? 

Ableism is definitely responsible for function labels.  Autistic people aren’t wired to have the same need or proclivity for ranking people or assigning them a value.  We aren’t natural supremacists, so we don’t generally care if someone is young or old, of a different race or ethnicity, is able-bodied or not, is a custodian or a CEO.  It’s difficult for me to even wrap my mind around the way that even the most progressive, forward-thinking neurotypical people seem to experience an immediate shift in how they perceive someone’s autonomy, humanity, and dignity once they discover that person is autistic.  Still, immediately, I can see a change every time this difference is introduced into a relationship.  There’s a ranking system that is innate, and I have suddenly fallen down the ranks.  Things that they perceived about me before to be strengths are now symptoms.  My opinion matters less, like I’m not a person with valuable, creative solutions talking anymore, but an autistic with “weird” ideas.  Those things I did before which people found to be incredibly brave and progressive became just aspie opposition.

Often, it becomes a way for neurotypical parents to try and reassure people that their children are not intellectually disabled, as if that would be in some way embarrassing.  It’s a reflection of a culture who has historically hidden away disabled family members in basements and attics. Function labels are a way to proliferate that kind of ranking system and the dehumanization of people who have a different neurotype.

Are there any labels or descriptive terms that are appropriate to use to describe how autism affects a particular person on the spectrum? 

There are absolutely better ways to characterize people on the spectrum.  A few labels I can think of are: funny, whimsical, creative, witty, insightful, brilliant, kind, or intuitive.  We have to move away from the paradigm of characterizing people by what they can’t do or what they can tolerate.  Trying to find a more correct way of talking about what someone can do or can’t do is not changing the language of supremacy and the perception which enables it.  Instead of focusing on how well a person is functioning, we need to focus on what environmental and social factors impact autistic people’s access to the pursuit of happiness.  Executive function is not a static trait, it’s a consequence of the environment.

Based on your experience with Acumen Consulting, what are some of the most common obstacles organizations face when trying to improve diversity within their workforce as well as accessibility to their services?

Sadly, most diversity interventions and initiatives fail or even cause more harm than progress.  If the efforts aren’t comprehensive, and if the employees don’t sense a real commitment from the leadership, then they will see in-services and continuing education as a waste of time and just something that has to be done for bureaucratic purposes.  Without first establishing a culture of inclusivity, making it clear in the mission statement, having questions about attitudes toward diversity in the interview, making tolerance and acceptance a significant portion of the training program for new hires, and adding participating into performance reviews, employees are likely to ignore or even resent inclusion and diversity initiatives.

What advice do you have for someone who is afraid to disclose their autism to a current or potential future employer?

Most developed countries have laws which protect someone from being fired or discriminated against in the workplace; however, many states have laws which allow employers to fire workers without cause or explanation.  As long as they don’t explicitly state that they are firing an employee due to something related to autism, then they are free from accountability.

Disclosing to an employer or potential employer is a risk and is not mandatory; however, if you need accommodations to perform your job, it will be necessary.  I would recommend to autistics that it is within their best interest only to disclose if there is significant potential for autism to impact your work.  If you’re becoming distressed on your job for lack of accommodations, then don’t suffer in silence.  Please speak to HR and tell them what you need to be able to perform your duties.  If you need to disclose, try to have your words written and printed before meeting with HR so that you don’t need to rely on your verbal abilities and working memory in a stressful situation.  This gives you time to collect the information you want to say without feeling like you need to over-explain or regretting that you didn’t say everything you needed to say.  It also proves in a non-aggressive way that documentation exists that you have disclosed your condition, which HR will add to your file.  This is protected medical information, and it can only be shared with other staff on a need-to-know basis.

What mistakes do neurotypical autism advocates make?

Neurotypical advocates make the mistake that we aren’t capable of speaking for ourselves or that we need people to speak on our behalf.  We don’t.  We need neurotypical people to use their positions of privilege to bring us to the table and allow us to speak for ourselves.  We need them to share their platform with us so that we can be advocates for ourselves.  Neurotypicals often use confirmation bias by taking what they know about one autistic person and applying it to the whole of the spectrum.  We are as diverse as the term, “human,” but our differences from NTs are vastly different.

Not every autistic person needs to be an ambassador or exemplar of what it means to be autistic, either.  In the same way that having graduated from high school does not make a person an expert on education or developmental science in adolescence, being autistic doesn’t mean that a person is an expert.  Neurotypical people need to champion the voices of autistic people who have spent years in advocacy and put in the work to have collected and assimilated enough information from autistic voices to be a fair representative of our collective voice.

When NTs speak for us, they take from us an opportunity to speak for ourselves.  They filter our perspectives through a neurotypical lens, thus removing from our self-advocacy the rawness and authenticity of our experiences and perceptions.  They take from us an opportunity to be heard, to show the world that we are sentient and independent thinkers.  We definitely need them and their efforts, but not to take us on like a project.  We need them to use their advantages and invite us into the conversation.  Without them, we will never gain parity and tolerance, both in the mainstream and in academic literature.

 

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  1. Pingback: Neurotypical Advocacy of Autism: An Interview with Jenna Gensic | Article Index

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