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Stories About Autism

I’m not only my autism

I was diagnosed with Autism in May 2015, at the age of 28. At first, I cried, I ran out of the room. I felt like I was sucker punched right in the gut and it left me gasping for air. So many thoughts popped up in my head while hot tears kept streaming down my face.

“Autism? Me? Why me?! Do I really have this? My life is now officially over. I have always felt so different from most people. I thought only boys were able to be Autistic? Aren’t Autistic people not really brilliant? Cause I’m definitely not. I’ll never be NORMAL now. Shouldn’t they have noticed this earlier on? I HATE AUTISM!”

As you can tell my thoughts and feelings were all over the place. Also, I had a very misguided idea of what Autism really meant.

I’m not gonna lie and say: “I have completely accepted my Autism,” however, I can say that I’m learning more and more. That being diagnosed with Autism doesn’t mean your life is over or that it has only a dark side. Yes, my autism can be a real pain. I’ll continue to run into people that will have no idea what Autism really means but that doesn’t stop them from forming their own opinions. There will always be people who seem to think/know what is best for me. To you I say; You probably mean well, but by spewing all sorts of comments/advice sometimes you just make me feel more lonely, more like a freak of nature, less like a human being. I’ll always have these anxiety moments, having difficulty answering the telephone, going to public places, meeting up with a friend, misunderstanding situations, interpreting facial expressions wrongly, seem rude, stand off-ish, childish, and even emotionless.

When you meet a person with Autism and that interaction went well, please don’t think like you have discovered the right method for every autistic person. No, you just met one individual. Like our skin colors, religion, likes and dislikes aren’t all the same; neither are we. (Heck! I wish it were just that simple! Life being just black and white without the confusing grey areas)

For example, some autistic people love hugs or giving hugs. I have difficulty with hugs.. but it doesn’t mean I don’t like them ever. Sometimes I do want arms holding me, keeping me safe from whatever I want to escape at that time. I have to be in a certain state of mind before I can accept or ask for a hug.

My dislikes from having Autism are these examples:

Outside noises/ sounds can be really tough for me. I am also very sensitive to smells, touch and sometimes even tastes. A dish that is too spicy for me can get me so overwhelmed that I’ll be having a meltdown. Smelling too much perfume can make me sick to my stomach. A train arriving at the station can make me want to clasp my hands over my ears and cry.

Certain repetitive stimming behavior. (Stimming= Self-stimulatory behavior) – Clicking with my tongue (When nervous) – flapping with my hands (Often when happy or nervous) – rocking back and forth (mostly when upset/scared/or when I’ve been overstimulated) – walking in circles (mostly when upset/scared/or frustrated ) – Making high pitched sounds (vocal stimming, when frustrated/angry but don’t know the reason, so I can’t use my words then.) – echolalia (just repeating spoken words or sentences) I dislike these because I often heard as a child, and still this happens often now in my adult years, to ACT my age, be normal, stop being so weird etc. So I will often push down these urges when I go outside and am in the big bad world. It does mean that I get overstimulated faster and will end up having meltdowns at home of epic proportions.

The hardest part is the anxiety and depression that often comes out of the blue. It’s me and my brain not understanding one and other and/or the outside world. Not being able to live up to the expectations of others or my own. My brain works so much differently than yours. I process information differently as well. Sometimes my brain shuts off and, that ain’t a pretty side. Meltdown ensues.

Meltdown:

Is not about me not getting my way. It’s that I had too much stimuli and it completely consumed me. I will cry, sometimes hurt myself by banging my head against a wall, hitting my head, stomach, face with my hands, biting myself, give myself bruises by pinching myself hard. It can last a few minutes or a really bad one can take up over a half an hour/or hour. So you telling me to “cut it out” or grab me and shake me till I stop.. NOT HELPFUL. You’ll make it even worse. You can try to talk to me, distract me, tell me to try and not hurt myself. Use your inside voice, calm, friendly. Maybe you can sit close to me or a bit further away and just sit there. Repeating calming sentences. “You are not alone“ or “I am here for you.” Just remember I’m not acting out for the fun of it, or to embarrass you. No, I simply can’t handle all that is happening in my mind and body. and I can’t seem to use my words.

Things I do like about my autism:

I have a way of connecting with dogs/cats/animals without having to use words – I love noticing details that other people miss – That I love to alphabetize my books/DVD’s – Remembering certain movie lines or a whole dialogue – How sometimes taking things literally creates funny/awkward situations – Appreciating little things in life – My fascination for bright colors and shiny objects – My own made up words – I am good at learning languages – I love morbid jokes, sarcasm (my own)

I’m still learning about Autism and how to blend it in my life:

I have a good group of people helping me. My psychiatrist, psychologist, those at Kwintes. Kwintes is an organisation that provides lots of help for me being able to live on my own in my small apartment with my pets. Kwintes, they help me make my life more Autism-friendly. We created a week board, we use pictures, lists to make it clear what should be done on those days. Figured out things that can help me when I feel overstimulated. ( Using Cloud B turtle – blue light with waves sounds, I love jigsaw puzzles, coloring, buy myself Lego so I can build a car etc )

At first I was like; it’s so childish.. but am learning more and more to just do what makes me feel good. Helps me through my day/week. So if that means I want to spend hours on building something from Lego I shall do that. Or spend hours on my jigsaw puzzle, so be it! We have a clear back-up plan if I do get overstimulated. What are the rules for those at Kwintes? What can they do? What can I do? When do you stay and when do you have to let it get out of my system and try to re-connect at a different time/moment? It’s not always black and white, sometimes they have to go with their guts.

I try to see myself as Juliana who has Autism.

I’m not only my Autism. I still have a long road ahead of me, still much to learn, more acceptance for myself.. but it’s not always as dark as I thought it would be with my diagnoses. I am still here, trying to find my own way.

I’d like people to know that Autism isn’t the end of the world, but it lasts throughout our lives. Remember that children with autism end up being adults with autism. And yes.. it mostly affects boys/men but there are also girls/women with autism, don’t leave us out. I’d like more representation on women on the spectrum cause we are here too. We matter too. Thanks for listening, reading this.

“Autism didn’t end my life.. it gave it a deliciously funny, tricky, but rich twist and unique perspective on how I look at you and the complicated world outside of my bubble.” – Juliana

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