April 2, 2019

Autism, Awareness, Acceptance, and Allies


Autism, Awareness, Acceptance and Allies
By: Jessica Costa


                In the previous article, Accepting Asperger's, I focused on my personal feelings on the diagnosis. The acceptance from my family, friends and fiancĂ© created the stepping stones that helped me learn how to accept myself. However, it was challenging due to a large spread of misinformation and harmful groups posing as allies. They use harmful language to promote fear mongering and frequently encourage the idea of 'curing autism'. This kind of language and mentality make the road of acceptance difficult. It makes it challenging to find good allies for the autistic community.
                Autism is often short for autism spectrum disorder (ASD) which "refers to a group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction."1 It is important to focus on the term "spectrum" when talking about autism. It affects everyone differently, to reiterate if you met one autistic person, then you have only me one autistic person. The identity of the individual, child or adult, can sometimes be overshadowed by the diagnosis. These differences has also led to some difficulty in discussions on topics such as awareness and acceptance.
                According to the Oxford dictionary, awareness is defined as "knowledge or perception of a situation or fact." 2 April is known as Autism Awareness Month and it is a difficult time of the year for various of reasons. The idea is to spread awareness about autistic individuals and their struggles. The issue with this idea is that it dismisses the real potential of the successes of autistic adults and children in the world. Awareness can be good if done with good intentions.
                As the internet grows, so does misinformation. There are a lot of articles about the struggles of being autistic, most commonly from the perspective of parents of autistic children. While these articles are meant well, they can cause a lot of damage if they are not written carefully. It can be a challenge to sort out what is helpful advice versus harmful advice. Some groups will take advantage of that confusion to perpetuate harmful ideas of autistic children and adults. These articles will have fear mongering language encouraging finding 'cures'.
                This kind of misinformation also hurts progress to switch from awareness into acceptance. There seems to be an expectation that awareness and acceptance are similar. However, according to the Oxford Dictionary, acceptance is defined as "the process or face of being received as adequate, valid, or suitable."3  It is not acceptance when autistic voices are spoken over. It is not acceptance to try to cure someone that is not neurotypical. It is not acceptance when autistic people are forced to hide their autism or to conform to a stereotype for the comfort of others.  Acceptance is not lamenting about the tragedy of being autistic either. Acceptance is creating a welcoming space for autistic people in the general public. Acceptance is hearing our voices. The realization of this will be an inclusive, neurodiverse society supportive of all diversity with our different strengths and weaknesses.
                Allies are crucial in moving forward towards being more included in society. A good ally listens to autistic voices with respect. They avoid spreading harmful misinformation. They help create a support system for autistic people. Most importantly, a good ally believes in our potential in the world. Great things have been accomplished when people have worked together in adversity. Let's start this April with a step toward a more inclusive future for all.






Endnotes

1.   Autism spectrum disorder (ASD) refers to a group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction. The symptoms are present from early childhood and affect daily functioning...A diagnosis of ASD includes an assessment of intellectual disability and language impairment.

From National Institute of Neurological Disorders and Stroke entry: https://www.ninds.nih.gov/disorders/patient-caregiver-education/fact-sheets/autism-spectrum-disorder-fact-sheet

2.  Awareness (noun): Knowledge or perception of a situation or fact; Concern about and well-informed interest in a particular situation or development.

From The Oxford Dictionary entry: https://en.oxforddictionaries.com/definition/awareness

3. Acceptance (noun): The action of consenting to receive or undertake something offered; The process or fact of being received as adequate, valid, or suitable; Agreement with or belief in an idea or explanation; Willingness to tolerate a difficult situation.

From the Oxford Dictionary entry: https://en.oxforddictionaries.com/definition/acceptance