The Girl with the Curly Hair - Asperger's and Me

by Alis Rowe

Even though I do like certain people and enjoy their company occasionally, I have problems socialising and get tired very easily. Most of the time, I am okay - and happiest - when I’m alone doing my own “Alis things.”

The way I describe the need for those “alone times” now, is that they are my “rebuilding times.” The stresses and strains of everyday life break bits of pieces from me and I have to reconstruct myself every day.

I don’t remember exactly what happened that made me hate the class so much. I know I was very shy and very quiet and immediately aware I didn’t fit in. Everyone else already knew one another, they all talked and laughed and included each other in their groups. I was generally ignored by everyone, even the teachers. I guess it was the Asperger’s barrier, showing its face again. In that moment, I just wanted to be ‘normal.’ I wanted to break the glass wall around me and experience life in the same way that the other children did. I felt very different - a “freak,” a social pariah.

Asperger’s Syndrome is like living inside a glass jar when the rest of the world is on the outside. I can see all the people and things around me but I can’t quite touch them.

The longer I wore my normal mask, the more my personality was suppressed, and there was always a huge emotional price to pay during some terrible episodes of suicidal thoughts, depression, panic attacks, and nervous breakdowns as a teenager.

But even so, despite my happy childhood, I still have terrible worries about abandonment and I’ve had them for a long time. At 24 I am still clingy and needy for my parents and I feel totally distraught the times they go away on holiday on their own. I don’t like being so attached to them; I know it upsets them that I feel so miserable when they do their own thing without me. I just feel like I can’t handle the world on my own.

Throughout my life there have been periods where I’ve felt very disconnected and aloof from other people.

For every planned situation, my head contains every single consequence, outcome, alternative and possibility. In an unplanned situation none of these thoughts exist, so they have to be constructed, from scratch. This takes up energy.

“Simple” decisions have big emotional consequences. Scenarios that have not been planned for, such as finding out the gym has unexpectedly closed due to a power cut, or that my favourite food item is out of stock, have the potential to disrupt an entire day’s routine - which can make me feel extremely anxious and upset.

I need routine and facts in my life. I always like to know what I’m going to be doing and at exactly what time. I also like to know about what the people close to me will be doing and when.

I also need to know about the actions of somebody else because they can affect my own schedule.

I know that, in my head, every day I have these so-called “scripts” of how things in the day are going to happen. This script provides schedules and clarity for me, the person with Asperger’s Syndrome, but once the rest of the world is involved, the script often goes off track.

It is also common for me to meet someone at our meeting place or rendezvous, rather than for us to go there together. For example, if there was an agenda to meet for a cup of tea at 11.00am or to see a movie due to start at 11.00am, I would much rather get there on my own so that I keep to my script, no matter what the other person is doing. My friend and I meet regularly in our local cafe, yet we each take our own bikes and travel there separately, despite living as neighbours. I do not want to be committed to someone else’s schedule or script.

If I am having a conversation with someone who is a strong or dominant character then I can have a lot of difficulty holding on to my point of view. Sometimes I’ll even start to believe the other person’s view over mine,

I do not always like it when people tease me, even though most of the time it’s done in fondness. For example, once a friend of mine commented on my clothing. She said, “I never see you wear anything else!” I felt self-conscious and embarrassed for a long time after. Because she was my friend, I was able to tell her that she had made me feel self-conscious. She apologised and said she had not meant to hurt me, it was just an observation, not a criticism or a personal attack.

I need to know reasons and rules for everything before I act upon something.

I’ve been told I can have a black and white view about other people contributing to their misfortunes. Grey is very hard for me.

I do not like the people I care about to feel upset. Unfortunately though, what happens is that I get upset too. I can then quickly switch from trying to help them to ignoring them, because I am overwhelmed.

It’s often said that people with AS see the world in “black and white,” whereas most NTs see shades of grey. I’m able to intellectually understand shades of grey in challenging situations but my emotional reactions to things are likely to be much more black and white and extreme.

I’m so emotionally sensitive that it’s easy for me to become totally consumed in my worries about anxieties, fears, guilt, depression, suicidal moods, loneliness, feeling different and any other intense emotions. Inside I am full of intense chaos. People with Asperger’s Syndrome are said to have “unusual world paradigms.”

Many people with Asperger’s Syndrome tend to think a lot and at deeper levels. You may ask questions that can’t be answered, which can make you feel frustrated or depressed.

As a human being, I really hate upsetting someone else and if it happens, even unintentionally, I find it very hard to cope and it can trigger a shutdown.

I have strong feelings of being hurt. Minor comments that other people don’t give a second thought to, have the ability to ruin an entire day. I remember things for ever.

I am “all or nothing.” When my weightlifting isn’t going as well as it should be, I tend to stop exercising completely. I can feel so discouraged by what I can’t do that I won’t do anything at all.

Yet I find it much more difficult to imagine, for example, how a child who lost their parents in the 9/11 bombings, is feeling - because I have not experienced the same. I can intellectually comprehend how they might be feeling, but it is much harder for me to actually feel the same way.

When I’m unable to pursue my interests, it feels as though my world has been destroyed. I am reliant on these things to get me through each day.

Every time I have to socialise, I have to psyche myself up.

when it comes to certain things it’s extremely hard for me to share them with other people. As an example, I am very possessive about my weightlifting space and equipment. Over a number of years our family has built up an excellent gym in our house. I don’t mind them using the cardio machines, but my sister occasionally has phases where she wants to lift weights. I get unbelievably distraught about this and, to be honest, the real reason is that weightlifting is my hobby and I don’t want to share my gym with anyone else.

Aspies are hypersensitive. This means our brains get overloaded quickly. Shutdowns or meltdowns often occur because we’ve been exposed to too many things or too many people, ultimately causing sensory overload.

Shutdowns can come on either gradually, over a few days or even weeks, or they can come on in an instant.

The best way I can describe feeling shut down is like it’s going into “hibernation” for a period of time. Some episodes last several days, and I won’t speak to anybody or I’m unlikely to leave the house. I also like to switch my phone off for several days.

It still takes me a long time to process left and right. Even though I’ve known the difference for years and years, it takes me several seconds to actually feel confident I have them the right way round.

Like many people on the autism spectrum, I go through food “obsessions.” These have included cottage pie, beetroot, and soya beans.

I get extremely distressed if I go into the supermarket to buy a certain item, only to find it’s out of stock. I’m sure most people would simply pick up an alternative, problem solved. However, this disruption causes total emotional chaos for me. I have not planned for this to happen and suddenly I feel very lost and confused. I just stand there not knowing what to do, because now my whole dinner routine has changed...

If I’m on the train I’d much rather stand up for the whole journey rather than sit on the tiny, narrow seats that are so close together that my legs often touch the person beside.

In less structured working environments, it can be horrible for the person with Asperger’s Syndrome who is expected to drop their task in an instant in order to work on something more urgent. We tend to be very singly-focused and good at doing one thing at a time, to a very high standard. It is easy for us to get totally absorbed in whatever we are doing. Moving us on to other things all the time can cause meltdowns.

I’ve had trouble maintaining jobs because I get fatigued having to wear my normal mask at work. It’s exhausting to always be polite, chatty, friendly and to act like you’re never having a bad day!

Whenever I am part of a group I tend to be very quiet and end up not joining in with the conversation, even with my family.

I dread receiving invitations to social things. I can cope with email or postal invites but telephone or face to face invitations are the worst, because it’s a lot harder to say no when you’re put on the spot. I do not like saying no to things; it makes me feel embarrassed and awkward and I always feel I’m letting the other person down.

I feel emotions intensely and, from my viewpoint, I really hate upsetting someone, I spend a lot of my time worrying if I’ve hurt anyone.

Having just read this conversation in hindsight, I’ve noticed that although I’m interested in finding out about their holiday, I am more interested in hearing about the things that would have been of concern to me.

Little things that require no thought for others, such as going out to buy groceries, or taking the train to get somewhere to a work meeting, are overwhelming tasks for me, whereas for others I consider they are just day to day tasks.

I do not like letting my friends down by cancelling our plans at the last minute (particularly since I do not like this happening to me), but there is no real way of knowing how I am going to “feel” on the day, as to whether or not I can see them. Sometimes it is difficult, because I might like the person very much, yet I just won’t have the energy to meet them.

I get anxious whilst talking to people. I wonder what they might be thinking, but most often I question whether I’m making any sense. My conversations usually consist of numerous, “let me rephrase that,” or I try and move the topic on to something my conversational partner is interested in. I can then just listen, even if I am finding the language hard to follow.

I have a small number of friends and each one of them is a very special person in their own right! It’s hard for me to maintain or develop a friendship unless the person is 1) understanding, 2) accepting and 3) at least somewhat knowledgeable about Asperger’s Syndrome. For example, a friend must be comfortable only seeing me once every few months and understand that this is not an indication of how much I like them. Once this initial “challenge” is put out in the open, it is easier for both of us to maintain a friendship that has fewer miscommunications.

Probably one of the biggest triggers for my shutdowns, which sometimes lead to depression, is simply doing too much. Since realising this, I’ve learned that to optimally “manage” my fatigue it’s best if I only do one, single, planned, thing every day.

Something like simply doing too much, as described above, can stress me to the point of depression. Stress is a huge trigger for that and if I am stressed for too long a time, I am highly likely to get overloaded, become completely socially withdrawn, unproductive, and consequently depressed.

Social pressure and the build up of stress are probably the biggest causes of my depressive episodes. I can fall into a very low mood for three to four weeks and during this time I will avoid everything. I shut down. I like to describe it as “going into hibernation.” I’ll stay inside my house, turn my phone off, and ignore all emails except the urgent ones. My mood descends to occasional thoughts of suicide. I’ll spend endless hours crying and feeling as though I’ve fallen into a black hole. But because of how bad I’m feeling I am unable to do the things I enjoy. If I could only do something I enjoyed, there’s a chance I’d get out of the hole but, unfortunately I am often completely unable to do anything at all.

We all experience emotions, but for people on the autistic spectrum it can be challenging to manage them. When I am sad, I can be extremely sad and forget that sadness is a temporary feeling. During times of intense sadness, I experience the ultimate feelings that life has just become too much. I feel I can no longer cope and do not want to exist in a world that I feel is uninhabitable. I do not have the energy that others seem to have. Even just the simple act of being outside of my house can depress me. Simply “being” on earth and growing up gives me a nagging feeling that there are many things I am unable to do or, simply don’t want to - socialising with others, small talk, the “professional/adult” phase of life, living independently.

Asperger’s Syndrome makes emotions a lot more overpowering and exaggerated and sometimes they’re so suffocating that all willpower to make positive change just disappears.