• autifacts

Locked-up behind a brain

Updated: Aug 18, 2019

There seems to be a combination of factors that keeps me away... Away from living a fuller life, away from good health, away from being without pain, away from being care-free, and frankly, I am growing more sick of it every year...

The first is physical health

The second is my sensitivity

The third is society

The fourth is mental health

Physical health

Health problems often co-exist with autism. Fibromyalgia, adrenal fatigue, chronic pain, asthma, and EDS are just a few buddies that seem to tag along with autism. As if struggling with your own brain isn't enough...

I have always had a fragile health. For one, I always caught the flu. If there was a bug in the air, it was sure to visit me. I was diagnosed with IBS and CVS when I was just a teenager, I went through glandular fever, suffered from sciatica, struggled with food sensitivities and I was just overall withdrawn and in myself.

Social pressure, jobs, expectations, the whole rat race we take part in to earn a little success, it's hard on everyone. But, it is especially hard to battle all that is outside when you are simultaneously being attacked from within.

Can anyone even grasp what it takes to drive a car when your intestines hurt so much that you can't even breath right?

But you need to, don't you? You need to get to work, because you need to earn money. You need to get your kids to school, because they need to learn. You need to be social at events, because you want to be a good role model for your little ones. And this isn't a minor virus we're talking about. The pains are always there, driving you mad, sucking away your energy and reminding you every day that something is wrong inside your body.


I could deal with the pain, honestly. With the help of pain relief medicine, long baths, taking things easy, not aspiring to be an incredible athlete but just being fine with being able to walk for 30 to 45 minutes each day, I could do it.

But then there are all the impressions that are pounding on my brain each day as soon as I wake up.

Kids screaming, the beeper on the dish washer, the dog barking, loud music, crowds at the school yard, conversations, sunlight, wind, cold, warmth, jeans that rub against my skin, a bra that hugs my chest tightly, make-up, new environments, new people, a branch that snaps, a streak of lightning, the rolling of thunder, the sound of hail, the thousandth question of the day, the smell of food, the organisation that goes into things as simple as cooking, laughter, sadness, anger, the energy other people carry around...

I'm like a doe on methamphetamine... An endless supply of it.


I can really hate the world we live in. Whenever I turn on the news, it's an endless parade of stupidity, misinformation, narrow-mindedness and lies. So, I turned off the tv. Unfortunately, you can't turn off society.

For some reason, it has always felt like I'm the one to blame for whatever is going on in my life. I'm either not thinking positive enough or I'm not being mindful enough or I'm thinking the wrong thoughts. Therapies such a RET, NLP and whatnot have taught me that it are our thoughts that control how we feel, both physically and emotionally. For some reason though, I couldn't apply this knowledge to myself. I have no thoughts when I get overwhelmed with stimuli. It happens, my brain cannot process it, so it responds in different ways. When a lot is going on around me, I get tired. When I need to play a social role in situations where a lot is going on around me, I get exhausted. When I cannot leave that situation because it is expected of me that I perform, my body will make that decision for me.

Thought management will only get you so far. When you are in a demanding situation - whether that is school, work, a birthday or a day out - you can think all the happy thoughts you want, but your brain is wired for chaos and chaos is what you'll get.

Along came the verdict. I am autistic and have ADHD. I found my explanations. I found my answers. I even found my tribe (online). But the things I lost...

I lost respect

I lost encouragement

I lost social status

I lost my will to battle and manage myself

Society sees autism as a disability, something that needs to be cured, something that needs to be prevented. Society sees a disabled person, not a full member of the population, not someone who can pull his or her own weight on his or her own terms. Society sees costly therapies and adjustments. Society sees Pavlov like treatments to get us to sit up like the rest of the monkeys. Society sees someone who needs help, who is vulnerable, who needs to be spared.

It is my experience that we - both neurotypicals and autistics - are taught to think of autism as a disability - as less - and that because of this we are in fact taught to hate ourselves.

I handed in the respect I felt before, only to receive belittlement in return. Autistics are a minority. We are, in some ways, in the same place as gay rights were about 40 years ago as I wrote before in my other blog. And I, as a part of that minority, feel the constant need to prove my worth to society.

- If you would dim the lights, I can work, please let me work for you.

- If you would give me some privacy, I can get to the bottom of this case, I promise. Please, let me have some privacy so I can prove my worth to you.

- I can go to your birthday party, just please, can I come a bit early?

I need to beg for my basic needs, my right of existence.

Mental health

What do you get when you add up social exclusion, sensitivities and health problems?

What do you get when you are under attack socially, physically and mentally?

You don't need to be a rocket scientist to figure this one out. You get depression and anxiety and anger. The most toxic cocktail of emotions to start you every day with.

Add hormones if you're female and you are all set.

I get anxious because of all my weird bodily sensations. Sometimes, my body will mimic a heart attack, just for the fun of it. Or my chest and throat will cramp up disallowing me to breath. On a weekly basis, I'm confronted with mortal fears,

and I am tired...

I get depressed because it is so hard to explain how I am feeling. I get depressed because managing my anxiety becomes more difficult each month. I get depressed because my world is closing in on me and it feels like I can do less and less as the days pass by.

and I am tired...

I get angry because what I'm asking for doesn't feel like much. I ask for quiet time, I ask for privacy, I ask for flexibility, I ask for a little less weight on my shoulders, I ask for quiet...

I'm not asking to be a free-loader, on the contrary, I love to contribute.

I'm not asking to be left alone, because I love company, just not too much of it.

I'm not asking to be relieved of any responsibility, I am the most responsible person I know, and therefore always seem to wind up taking charge...

and I am tired.

I'm so tired in fact, I'm absolutely sure I'll never recover from it. I've have seen what this world is like. I've seen my place in it. I've seen all the terrors society can inflict on itself. And for what?

It is so hard to keep my chin up in times like these. I know there will come days when I will feel better, when all these thoughts have faded to the background for a while. This is just the rollercoaster of my life and right now, I'm experience 5G's of pressure while tearing through another curve on my track of life.

But sometimes I wonder what it is I'm fighting for. I wish I knew my life's purpose.


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