Red Instead: Why Autism Speaks Does Not Speak for Me

Last year, while celebrating Autism Acceptance Month, I discovered the #RedInstead movement. It was a hashtag created by the Autistic community to counteract Autism Speaks’ “Light it Up Blue”. At first I wasn’t aware of its meaning, but after some digging I found that I agreed very strongly with its message of acceptance.

Many of us on the spectrum don’t support Autism Speaks. The organization has spread fear and misinformation, dehumanizing Autistic individuals. They treat Autism as a tragedy, equal in measure to losing one’s child in an accident or an epidemic. In one of their advertisements titled “I am Autism“, children with Autism are said to destroy marriages. In another video, a woman with an Autistic child is interviewed stating that she almost drove off a bridge with her Autistic child. Autism Speaks holds an antagonistic view of the Autistic community, often preaching to parents and placing their mental stability above that of their children.

Most people who are not on the Autism Spectrum are not aware of the harm that Autism Speaks creates in our community. They continue to donate and support the organization whilst those with actual Autism are ignored. Every year as April rolls around, it is a struggle to spread our message to neurotypicals. #RedInstead has gone far, and organizations like ASAN(Autistic Self Advocacy Network) have gotten more support, but Autism Speaks is often what takes up most space in common media. We have had enough of their awareness. What we really need now is acceptance.

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Rats are Rat-i-cal

I’m sure you could tell from my blog name that I have a bit of a passion for rats. This happens to be my special interest as an Autistic individual, and honestly I’m very proud of it. It makes me happier than ever to see cute photos of these little creatures, or to hear about heartwarming stories told by their owners. Much of my art is inspired by these rodents, and I have to thank them for a lot of my current ideas and stories.

So, why do I like rats so much, especially when the rest of society sees them as disease-ridden vermin? Well, it’s for many reasons. Some of it is the cute factor, of course. I find rats to have adorable features, like their whiskers and furry potato shaped bodies. Their antics are cute too. Watching someone’s rat steal a raisin from their hand right as they were lifting it to their mouth, or grabbing a pair of underpants before hopping away across the floor is a humorous scene to be sure. Rats are also quite cuddly. Look up cute rats on YouTube and you’ll surely find videos of rats snuggling up with their owners. As a viral post on Facebook puts it, they’re just like tiny dogs.

Alongside these, there is also a symbolic meaning to my enjoyment of rats. Having been born with Autism, I was always an outcast throughout my childhood, often called ‘nasty’ or ‘weird’. Rats similarly receive this treatment. They are hated and shunned by humanity as monsters. In truth, domesticated rats are sweet little things who can be trained and played with. Rats can also be heroes. A rat named Fido saved his family from a fire, and in laboratories, it’s been found that they will rescue each other from harm’s way.

There are so many reasons for my love of rats, and if I tried to list them all here, this blog post would go on forever. While I cannot own any of these creatures in my current living situation, I do hope to have a couple as part of my family in the future. That day will be a dream come true.

It’s Okay to Have a Special Interest

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One of the biggest areas of my life from childhood to this very day has probably got to be my special interests. They’re often subjects that I hang onto passionately for years, months, or even just a few days at a time. A lot of people on the Autism spectrum have these interests, and sadly many will often find themselves treated less than favorably when it comes to dealing with them.

I remember a time in Elementary School when I was very interested in Lilo and Stitch. I was bullied for my tendency to talk almost constantly about the little blue alien and his human friend. I was even beaten up once in the playground for it. Later on, I was taught how to converse in a more socially acceptable manner with neurotypicals, keeping my interests to myself until they were brought up. Luckily for me, my interests were not taken from me completely as they are for many other people on the spectrum.

Special interests, from what I have gathered from others with Autism, seem to be treated as a nuisance by many parents. They are either something to be held out of reach of their children until they are earned, or to be wiped away completely. What most may not understand however is that special interests are what make the world so much more tolerable and interesting to someone on the spectrum. Children with Autism are not the only people who suffer from stigma toward their interests either. Adults on the spectrum are often ridiculed for what they enjoy, especially if it is ‘inappropriate’ for their age. Many of them are teased and made fun of on blogs and YouTube channels as if they are freak shows simply for enjoying a children’s cartoon or playing a game meant for younger audiences.

Special interests are a big part of Autistic life, and that life can be made many times harder by having such a large chunk of it stripped away. Sure, teaching a child how to socialize correctly is great, but taking away the one thing that makes them who they are is not. Everyone has interests. Those of us on the spectrum are just a little more passionate about ours. Is that really so bad?

Dating on The Spectrum

candles-1645551_1920It can be difficult for many people on the Autism spectrum to find and stay within relationships. Socialization is possibly the most intimidating prospect about the entire ordeal, and making even one mistake feels as if it can rob you of all your chances. Once you find someone who accepts you for who you are though, your entire world can seem to shift for the better. There will still be bumps along the way, but none as large as having found that special someone.

For me, meeting people on the spectrum made it much easier to find a partner. Throughout my life I think I dated just two neurotypicals, and both times I found the relationship falling apart faster than a cookie dunked in milk. Even though we had some things in common, hanging out was often quiet and uneventful. This is not to say that any autistic-neurotypical relationship won’t succeed. Many have been known to work out well with good communication and understanding. As for myself, having someone on the same mental level as me was a definite boon, especially if we shared interests. It was easy to find neurotypical candidates who enjoyed video games, but none could ever talk about them with the same amount of passion that I enjoyed with my aspergers. In fact, they would often just grow annoyed hearing me speak so much about Halo and how adorable I found the little alien Grunts to be.

Having a relationship even once you’ve found the right one can still be confusing for someone on the spectrum. I remember the way Sam in Atypical describes how he cannot understand love or how to ‘just know’ when he’s found the one. I’ll be honest in that this too happened to me as of recently. What I realized is that love isn’t always magical fireworks like Disney and many romance novels may have you think. Love is being happy around your partner and knowing that you wouldn’t mind having them around more. Do you feel safe with them? Do you want to be near them more? Do you think about them a lot? Well, that’s love. The idea of knowing at first sight is often just a fantasy, a lie uttered to the audience of fairy tales.

Affection can also be tough for someone dealing with the sensory overloads that sometimes come with autism. I know that I twitch or jump sometimes when someone touches me in certain areas like my side. The key to this is to tell your partner about your boundaries and where you do and do not wish to be touched. If they have sensory issues as well, listen to their requests too. This is important for keeping you both happy and comfortable. The last thing you need is constant fear that your partner might touch you in that discomfort zone again.

Overall, it is very much possible to find your true love, even when you’re on the spectrum. It will take time and patience, but eventually you’ll find someone who you match with well. When that happens, the gloom of believing you are forever alone will disappear, and you’ll find that your differences will only make you more attractive to the person you have chosen to be with.

Atypical and Relatable

penguins-429128_1920As someone whose seen multiple pieces of media regarding autistic and ASD characters, I wasn’t expecting much accuracy from Atypical. However as I began to view the Netflix show with my boyfriend, I found that it was very easy for me to relate to the main character, a teen on the spectrum named Sam. I grew up with Aspergers myself, and though I don’t exhibit as many of the behavioral quirks I did as a child I still recognized a few shown in Atypical as mannerisms that I still possess. It was a shock to observe this in the mainstream media, who are usually content to depict autistic characters as ingenious mathematicians with little to no personality other than their talents.

I think two of the biggest traits that I feel I can relate to in Sam are his special interests and stimulation overloads. Scenes in which Sam grows enthusiastic about Antarctica remind me so much about my own passion for rats, and the way he reacts to the discomfort of the seat cushions on the bus are similar to the way I avoid jeans with buttons on their back pockets. The way in which he has trouble understanding social concepts is also a trait that I can recognize from my days in grade school.

Of course, there are some things that I do not connect with in Sam as well, like the difficulties he must deal with in the beginning of the series, such as picking out his own clothing or having to rely on his sister for guardianship. While these may not fit my experience with autism, I am sure that they can be found relatable by others on the spectrum. The show does a good job of presenting more than one person’s experience, and I feel like the creators must have really done their research.

To others out there on the autism spectrum, how do you feel about this new Netflix Original? Do you find yourself connecting with it like I have, or would you say that it’s missing something for you?