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This Is What You Should Know About Autism

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If you Google “autism,” chances are you will find links to website detailing symptoms, diagnostic criteria and a medical approach to the diagnosis.

You might even find several parent stories talking about how challenging it is to parent a child on the autism spectrum.

Yet, to understand autism, it is best to ask the experts: autistic people.

This is why we reached out to our autistic community and asked, “What do you want the world to know about autism?”

These were their responses:

1. “Being diagnosed was the best thing to ever happen to me. Before, I had no idea why I was so different and it caused me a lot of pain. Now, I have a community of wonderful autistics to reach out to when I need advice. Knowing there are people out there who I can relate to is great.” — Beth P.

2. “The times you see me being exceptional, are the times that I am allowed to be me. Being Autistic, my brain is literally wired differently than normal brains. Information is presented to me differently, and I have to process it differently to get to the same conclusions others will get to. I constantly receive too much information from the world around me. This leads to constant information overload, which can cause me to shut down, get angry, get sad, etc. when the level of overload is more than I can handle at the time. Movement, sounds, voices, vibrations, smells, etc. are all amplified for me and cause anxiety when there is too much for me or I can’t identify what is going on. I try to focus on other things and do repetitive motions, or say random things, count out loud, etc to re-direct the information flow (officially called ‘stimming’), but this appears weird to people, and getting questioned about it causes more anxiety so I try to hide it. Social situations are a big problem as people inherently present a lot of information that I have to process and it’s frequently overwhelming. It’s not that I want to be antisocial. I do like interacting with people, and need support from others, but I need to be alone frequently to keep from being overwhelmed and to be able to focus on a task. Being forced into the box of what other people expect to be normal, and being expected to work, act, learn, etc. the same way everyone else does is harmful to me. I need structure and routine in many aspects of my life to help manage the information overload. I try to act normal on the outside to avoid questions as to why I act differently. I have to pre-rehearse interactions over and over in my head like I am rehearsing a play in order to come across ‘properly’ in social situations. When I don’t have a script for a situation, I can get scared. I intentionally over-do things and do them quickly just so people will have a trust in me that I will get things done and let me follow my own path as much as possible. I over-explain things to avoid questions that I may not be able to answer as quickly as people expect to avoid looking weird or not knowledgeable on something.” — Mike S.

3. “We aren’t as different as some may think. We have strengths and weaknesses just like everyone else, but at the same time, we are all individuals. I am more than a label or statistic. I am more than the stigma society puts on neurodiverse individuals. I am more than what my IEP said I am. And instead of magnifying weaknesses all the time, we should magnify strengths, and uplift the neurodiverse community. Stand with them instead of against them.” — Danielle H.

4. “Autism is a lot more than behaviors. It’s the way we process things. Behaviors are used to diagnose, but behaviors are not, primarily, what makes me different. I can mask behaviors — if I want. The way my brain processes things makes me different. And I can’t ‘mask’ that.” — Shayna G.

5. “Please don’t tell me I’m not autistic. Just because you can’t see my disability doesn’t mean it doesn’t exist. Please just accept me for being me and that includes autism and all the quirks that go along with it. I accept your quirks no questions asked, even though your behavior seems foreign to me because our brains are wired differently. Know that I can’t always articulate how I feel or what’s going on in my brain, please be patient and give me time, I will get there. But most of all, just because you know me and how autism is for me, don’t ever think you know autism as a whole. It is called autism spectrum disorder because we all fall in different spots on the spectrum and we all experience autism very differently.” — Amy A.

6. “I really wish there was more understanding about the vast differences on the spectrum. Because I’ve been forced to train myself into pretending to be typical for my job, people doubt my diagnosis. Especially because even though I’ve come to love who I am, and even think my perspective makes more sense than a ‘normal’ person, as a child, all I wanted was to have a friend. To fit in. To not be the weird one. And it took years of questions, being gullible and naive, and oblivious, before I learned to blend as well as I do. I still struggle with the uncertainty of wondering, ‘Am I doing this right?’ because what comes naturally to others just doesn’t for me. I hide my over stimulation as much as I can, I feign eye contact. My academic prowess from just pure curiosity has helped me understand the cultural rules I was breaking with my behavior, and I put a lot of effort every day into behaving ‘normally.’ I smile. I try to hide my anxiety and mood swings. They don’t realize how stressful is to hide my real reactions to the intensity of my life. I need to recharge, and often I have meltdowns whether it be hiding on the bathroom at work, or when the last thing when I get home sets me over the edge. It is incredibly taxing. To this day, people still say horrible things to me and call me an attention seeker. The only reason I ever even admit to my diagnosis is because I feel like they think I’m weird and I want to explain that I don’t always understand. Even when I say Asperger’s, I am met with, ‘Yeah, but you’re so high functioning you’re practically normal!’ They say it like its a compliment, but what I hear is ‘who you are isn’t normal’ and ‘it must be easy for you.’ The world is a diverse place. Everyone is unique. Everyone has obstacles and strong points. We should be more supportive and compassionate with all, and unless you have a degree in the subject, don’t start questioning a person’s diagnosis. It causes much more harm than good, for everyone on their spectrum.” — Laura W.

7. “I’m not ‘cured’ because I got good grades, #SheCantBeAutistic. My elementary school took away my IEP, so I never used services to help me with school work. I struggle with seeing ‘the big picture,’ and that made graduate school hard. It is also still difficult to form deep social connections even though that is something that I’m trying to work towards. Despite all that, I find joy in a hobby that you wouldn’t expect for someone on the autism spectrum: Lindyhop Swing Dancing. My friends also tell me that I give good hugs.” — Jessica H.

8.“When you’ve met one autistic person, that’s it… you’ve just met one autistic person. We are all different, please don’t assume you know us using massive generalizations.” — Michelle W.

9. “The number of Blacks diagnosed for autism is the same as Whites, yet we get ours later in life and often have to fight for assistance and other benefits.” — Emilie C.

10. “This isn’t fake, nor is it an excuse. My Aspergers is real and it’s not funny. Also, please don’t get up in my space or complain when I get upset because you’re always coughing or making noise.” — Tina L.

11. “Autism doesn’t mean we are less human than everybody else.” — Shannon A.

12. “We have human rights just like everyone else. We don’t want to be paid sub-minimum wage because we have autism.” — Shane D.

13. “We want a good interaction with people, but it can be hard.” — Aubrie W.

Are you an adult on the autism spectrum? What do you want the world to know about autism?”

Getty image by Benjavisa

Originally published: April 20, 2018
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