By: Jay Meythaler

In recognition of National Autism Awareness Month in the United States that begins on April 1st this year, and World Autism Acceptance Week which occurs between March 28th and April 3rd, I am highlighting the advocacy work of Tania Melnyczuk. Tania is the Collaboration Director of the Autistic Strategies Network, as well as an educator who devotes her time to creating awareness of the U.N. Convention on the Rights of People with Disabilities. I first became aware of Tania’s passion for the advocacy of the autistic community from lectures on her website. Being a person with autism herself, her accessibility to and relatability with other people that are Autistic stirs an obvious inner drive to ensure that people with Autism are seen, heard and understood in our society.

Tania’s definition of Autism is initially what drew me to her work. In Tania’s eyes, Autism is neither a disorder nor a gift, as it is commonly referred to. Tania’s definition of Autism is, by comparison, more neutral and more expansive. 

Her definition speaks to the first of four areas for Autistic advocacy that Tania lectures about: Paradigm. How we define Autism is important because it determines the way we behave toward and treat people with Autism. Tania’s definition of Autism invites a revolutionary kind of paradigm when advocating for people with Autism in a society that often seeks to cure it. Tania Melnyczuk’s work has become a gateway for me, to enhancing and understanding how to work and engage with people that are Autistic. Let us start with Tania’s description of what Autism is.

Autism is an umbrella term for a particular cluster of neuro-developmental endo-phenotypes” (Autistic Strategies Network, PART 2, 2:20).

Under Autism’s umbrella there exists multiple “types” of Autism. Although these types can be seen as distinct from one another, they are also grouped into a specific cluster that reveals each of them to have some commonalities with each other. To better understand what is going on here, Tania asks us to consider a venn-diagram which contains many overlapping, oddly shaped circles that are also three dimensional in form (Autistic Strategies Network, PART 2, 2:20).

This image of a Venn-diagram conveys an important message that Autism may present differently from one person to another. Some behaviors that are problematic for one person with Autism, may not be problematic for someone else with autism. Some behaviors that are helpful to one person with Autism, may not be helpful for someone else with autism. Interestingly, if we were to rethink the traditional “high-and-low functioning” scale, Tania would ask us to consider that a high functioning person with Autism and a low functioning person with Autism could have a common struggle despite not having other shared experiences.  Tania implores neurotypical people to ask a person with Autism, “what things cause you to struggle?” and then to be curious to the fact that a response may or may not apply to other autistic people.

Another of the four areas for Autistic advocacy relates to the topic of communication. Even though communication issues may impact some people with Autism, Tania shares that neurotypical people should be less concerned about this.  Tania talks about the Double Empathy Problem that describes the social communication problem occurring; not so much between people with Autism themselves, but rather between People with Autism and neurotypical people who misunderstand each other.  Tania emphasizes that people with Autism are to be respected for their different forms of communication.   People with Autism and neurotypical people need to learn from each other.  And if we want to help people with Autism, we need to listen to what they tell us is helpful for them (Autistic Strategies Network, PART 2, 1:20).

Next in the breakdown of Tania’s definition of Autism, she describes this cluster of oddly shaped three-dimensional circles as neuro-developmental in nature. She shares that the term Neuro refers to the nervous system, and developmental, in this case, means the way the nervous system has developed (Autistic Strategies Network, PART 2, 2:30).

Further, Tania defines Endo-phenotypes as it relates to Autism. Tania describes the term phenotypes as how one appears on the outside. Phenotypes are not like genotypes, which refers to one’s genetics. When describing phenotypes, Tania asks us to picture a bed of flowers that have been sewn from the same envelope of seeds but appear to be different from each other as flowers begin to bloom. Some of these flowers are purple, some are white, and some are a combination of purple and white. Because these flowers come from the same type of seed, they have the same genes (genotype), but appear different in form on the outside (phenotypes). Phenotypes, Tania explains, can also be expressions of behavior (Autistic Strategies Network, PART 2, 3:30).

So, the word Endo-Phenotypes means, “What you are on the inside (endo), determines the way you are on the outside (phenotype). What this tells me is that people with Autism do not need, on a fundamental level, to change. Neurotypical people who support people with Autism are working with people who, on the outside, are how their insides have determined them to be. Thus, we get to support people with Autism, “Be who they are”.  When we come from the paradigm of “working with what we have”as a primary approach to advocating for people with Autism, everyone is better off.  For example, Tania describes people with Autism to be like canaries who were used in the mining industry to alert workers if there were harmful gasses in coal mines.  People with Autism are often the first to be impacted by poor environmental factors, such as pollution and poor food and health quality.  Like canaries who assisted coal miners through their sensitivity to gas, people with Autism can show the rest of us when our environment needs to improve (Autistic Strategies Network, PART 3, 0:55).  

Tania’s definition of Autism reminds me of the following quote by Fred Rogers (Mister Rogers), “It’s not honors and the prizes and the fancy outsides of life which ultimately nourish our souls. It’s the knowing that we can be trusted, that we never have to fear the truth, that the bedrock of our lives from which we make our choices is very good stuff (as cited in Office of Communications, Dartmouth, paragraph 14).”   When people with Autism are trusted, embraced and are seen as people whose bedrock of their lives from which they make their choices is good stuff, it is at that point that we may begin to notice that we are doing our part in the effort to help people with Autism optimize who they are.   

 

Autistic Strategies Network.  (2019, May 8).  4 Focus Areas for Autistic Advocacy PART 1 – Introduction [Video]. YouTube.  https://youtu.be/Kd23ofDGs9w

Autistic Strategies Network.  (2019, May 8).  4 Focus Areas for Autistic Advocacy PART 2 – Paradigm [Video]. YouTube. http://youtu.be/dRtEERI-a24

Autistic Strategies Network.  (2019, May 8).  4 Focus Areas for Autistic Advocacy PART 3 – Health [Video]. YouTube.  https://youtu.be/dDsGqaC8rjQ

Autistic Strategies Network.  (2019, May 8).  4 Focus Areas for Autistic Advocacy PART 4 – Communication [Video]. YouTube.  https://youtu.be/rmY0RikD-GM

Autistic Strategies Network.  (2019, May 8).  4 Focus Areas for Autistic Advocacy PART 5 – CRPD [Video].  YouTube.  http://youtu.be/9OLTdHdMGzE

Autistic Strategies Network.  (2019, May 8).  4 Focus Areas for Autistic Advocacy PART 6 – Conclusion [Video].  YouTube.  http://youtu.be/JT0EJKndYBw

Office of Communications.  (2018, March 27).  Revisiting Fred Rogers’ 2002 Commencement Address [Lecture notes]. Dartmouth.  https://home.dartmouth.edu/news/2018/03/revisiting-fred-rogers-2002-commencement-address

Autistic Strategies Network: 

https://autisticstrategies.net/

National Autistic Society:

World Autism Acceptance Week

National Autistic Society: 

https://www.autism.org.uk/ 

UN Convention of the Rights of People With Disabilities:

https://tania.co.za/crpd-article-22-respect-for-privacy/