Autism Awareness Month is here. And as someone who has autism (Aspergers), I’d like to give neuro-typicals some advice about how you can properly observe and be helpful this April.
Do not speak over, or interrupt, someone with autism when they are sharing their story. Doing so invalidates our story and essentially says to us, “Yeah. You may have a rough time, but mine is worse.” You may have had a rough time, but people with autism don’t always open up about their experiences, and when we are interrupted and told our story isn’t as bad as others, it only disincentives us from telling our stories anymore. Autistic people go through a lot of roughness. Autism is frequently thrown around as a slur. We are told that we are lesser for existing and that we are a burden. So, when you speak over us, it only reinforces the idea that our experiences don't matter and we should just accept this abuse that we receive.
Do be understanding. Please listen to our stories. Understand what we have gone through and continue to go through. It makes us feel as though someone actually cares about us and our story. A little bit can go a long way. And you might learn something too!
Do not say, “You don’t look autistic.” You may mean it as a compliment and have good will in your heart. But it is pretty damn offensive. First, it infers that having autism is a negative thing and that we should be lucky we don’t look or seem like we have it. It also creates a structure that essentially makes it so that we strive to appear (or be) non-autistic and that we should shun and hate our differences rather than embrace it. And on this note, please don't use autism as an insult or with negative connotations. It's very hurtful.
Do understand that we stim. Some autistic people stim, or we make repeated physical movements (Such as bouncing our leg, spinning a pen, clicking pen, folding paper, etc.). We are not doing these things to purposely annoy you. We do these either to relieve energy, make ourselves feel comfortable or we do it subconsciously. If you inform us what we are doing and that it is annoying you, we will try our best (if we can) to stop whatever action it is. But understand that stimming can be a coping mechanism when we are faced with unexpected or sudden disruptions or occurrences. Stimming is something we can do to release stress or anxiety or prevent us from becoming restless and acting out. So please understand why we might be stimming before being rude to us about it.
Do not support Autism Speaks. The vast majority of the autism community rejects them and views them as detrimental. They seek to cure autism. They wish to remove something that many of us are okay with. The majority of us don’t want to be cured, we just want to be accepted and understood instead. They have also only had one autistic person on their Board of Directors. He resigned because he was so frustrated with them. They also normalize the idea that it is okay for parents of kids with autism to imagine murdering their children. That is not okay in any situation. The majority of their money also goes to things not seeking to actively improve the lives of those with autism. Four percent of their budget goes towards Family Service grants. Opposed to the forty-four percent going towards research, with most of the research going towards curing autism and preventing it, rather than improving the quality of life for people with autism. For more information, here are some links. 1 2 3 4
Do understand that we don’t always get social cues. We won’t always understand when people are disinterested in what we are talking about, what proper social norms are, or why people are feeling a certain way. We don't normally mean to be rude or uncaring, we just don’t understand how people’s emotions work and don’t always get why someone is upset or angry over something that we, or someone else, did.
Do not preach that vaccines cause autism or any rhetoric that is similar. This rhetoric is horribly false. The “doctor”, Andrew Wakefield, that published the study was found to be in several violations when conducting the study, procedurally, scientifically, and ethically. He ended up manipulating the medical history of the patients he used in the study, with the evidence showing he was directly involved. It was also revealed that he had taken money from a law firm that was wanting evidence to use in a law suit against vaccination companies and not declared this beforehand. This a major ethical and procedural violation. Most of the coauthors of this paper have withdrawn their name from the papers. Wakefield was stripped of his medical license. “The alleged autism-vaccine connection is, perhaps, the most damaging medical hoax of the last 100 years” (Flaherty para. 1). Even if this connection were true, which it isn't, this equates having autism to being bad. Plus, it is saying that I would rather have my child be sick and risk death rather than have autism. I refer you to this video:Please understand that I do not speak for everyone who has autism, but rather for myself. Many of us don't want to be cured, but rather to be accepted. We don't suffer from autism, we suffer from the ignorance people have. Everyone who has autism has their own opinions and may disagree with mine. I just thought some insight might help.
Citations:
Flaherty, Dennis K. "The Vaccine-Autism Connection: A Public Health Crisis Caused by Unethical Medical Practices and Fraudulent Science." Sage Journals. Sage Publications, Oct. 2011. Web. 5 Apr. 2016. <http://aop.sagepub.com/content/45/10/1302>.
