Nothing about us without us!
This guest blog post is a collaborative writing from the attendees of the My Autism Ally Spectrum Sisters group. This group is for females on the autism spectrum age 18+. If you would like more information about Spectrum Sisters, check out our Support Group page https://www.myautismally.org/support-groups or email us at info@myautismally.org
It’s April. It’s time again for autism awareness month. There will be fundraisers and activities with a focus on autism, but only for children. Adults seem to be forgotten as if autism just seems to magically disappear after you become an adult. When the topic of discussing autism awareness month was brought to the group, at first no one really had any thoughts as it didn’t cross their mind as having any relation to them in any way. It wasn’t until we started discussing the topic that we found this is a controversial time for the autistic community. That may leave you wondering why that would be the case. Oftentimes, it seems as though promotions to accept autism focus more on the neurotypical population’s view and relationship to autism, than on the autistic community itself. We often feel left out of our own conversation, underestimated, and overlooked, which brings about the use of the slogan, “Nothing about us without us.” In a recent meeting of Spectrum Sisters, group members discussed their thoughts and feelings concerning autism awareness month. We hope to convey, to the reader, our thoughts and feelings towards autism acceptance and awareness, and what we would like people to know about supporting autism acceptance.
When you choose to support or participate in activities promoted by organizations, observe or ask “How are autistic individuals being represented?” Is the focus on autism or autistic individuals? There is a difference between the two. A focus on autism can often be promoted by neurotypicals, directed towards neurotypicals in regards to the challenges surrounding autism, while reinforcing harmful stereotypes of autistic individuals. Their efforts may seem like they would aid in the support of autistic people when in fact, they strengthen the misconceptions of the autistic community, further solidifying the barrier between autistic people and their world. Autistic people would like to move towards an authentic acceptance of our autistic identities, by presenting an autonomous and diverse representation of our community including individuals of all ages, genders, and talents. We discussed things like supporting special interests, especially of adults and encouraging Autistics to embrace the things they truly love. These are the things that make us who we are and represent us, but many times society is telling us they are unacceptable. It feels as if society just tells us to grow up and fall in line with their idea of neurotypical expectations.
As autistic people, we love who we are. What we don’t love are the stereotypes and misconceptions that society has assigned to us. All too often, causes seem to focus on our challenges and a cure, instead of our talents and our need for genuine support when interfacing with our world. Rhetoric that focuses on a “cure” is highly offensive and suggests to autistics that there is an unacceptable issue with who we are. It suggests that people would prefer a world in which we didn’t exist. If that is not what is meant, then it is time for different words. It is time to put genuine efforts in removing the barriers that separate autistics from the world, and not the removal of autism from the world. This also leads to misconceptions that Autism looks a certain way or that you can see it, so many of the women in the group share stories of feeling invalidated or like an imposter as people will question their Autism because they can’t “see” it. Because they have been able to mask it for so long, women have not been given a voice in this community and they are going undiagnosed and misdiagnosed and feeling alone. Autism Awareness month does not touch on this in any way shape or form, so how does it represent Autistics?
This brings us to the final consideration when choosing to support autism awareness month. During autism awareness month, no doubt you will see promotions to raise funds to aid those with autism, but it is important to investigate and ask the following questions.
Who is raising the funds and why?
Were autistic people involved in the charter of the cause?
Were we consulted as to the manner of support and acceptance we need?
Is the money that is raised being optimally allocated?
Are autistic voices being pushed aside, while resources are funneled towards wasteful ends? We see too many organizations that are exploiting autism and profiting, while autistic individuals are still in the same place they have been- lacking adequate supports throughout their lifespan. This is especially true in the case of women and adult autistics.
We hope you will take time to meaningfully consider these questions. We hope you will take time to get to know us, autistics over autism. We hope you will come to know that we are a diverse group of passionate individuals. We hope you will choose to support causes and organizations that truly bring us together rather than push us apart.
Thank you.
The Spectrum Sisters