Special interests

Someone shared a link today which gives one lots of food for thought. If you'd like to read: http://blogs.plos.org/neurotribes/2011/03/29/loving-lampposts-a-groundbreaking-documentary-about-autism-love-and-acceptance/

The boy's fascination with lampposts brought back memories. Two of my special interests as a child were fences and leaves. I was always on the lookout for fences made from more than one kind of material, or that were more than one colour. And loved to count them. Some fences were borderline - I remember how agitated I felt when my mom drove too fast past such a fence and I did not have enough time to assess whether the fence qualified to be counted or not. I knew exactly how many there on our way to school, or town, or the airport etc, but I still needed to count them every time. And found it hugely exciting when my mom drove different routes - new fences to see and count! Going on holiday was equally wonderful - whole new towns full of fences!

And leaves - how wonderful leaves are. I was specifically interested in the length of the middle nerve of the leaf and could spend hours peeling away the rest of the leaves and then compare the lengths of the nerves I had. This was serious business. And I had an ongoing dialogue running in my head the whole time. This would switch off the moment I put the leaves down, and start up again when I started working with the leaves. I guess those were the hours people describe as 'in a world of her own'. Which is hard to understand - aren't we all in a world of our own?

These kinds of special interests is described as 'persistent preoccupation with parts of objects', 'encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus', 'apparently inflexible adherence to specific, nonfunctional routines or rituals', and so forth. These descriptions make me smile and make me sad at the same time. Why do other people have the right to see this as 'symptoms'? Why is it bad? Why could I not decide that other little girls' fascination with barbies and tea parties and clothes were inappropriate and nonfunctional? Because that is the way I felt. I have grown to appreciate that we all live in our own worlds with our own interests, and I do not see other peoples' interests as negative, as 'symptoms', even if I do not understand them at all. I would like the same acceptance for me and other autistic people.

Asking for help.

Very often, when I mention the struggles I had as a child, I would be asked why I did not ask a grown up to help me. I always reply that I don't know. But I have spent some time thinking about it, and I think I am slowly starting to understand.

It may sound strange, but a big factor was that I simply did not know that asking for help was an option. From when I was very young, I thought that not knowing something was a bad thing. If I did not understand something, it was my fault. If I did not know certain facts, it was because I was not clever enough. If I did not know how to do something, I must have missed the instructions that were surely given. After all, the other kids seemed to know things and manage to do things I had no idea about, to ask for help would be admitting that I was at fault for not listening or knowing. So I simply believed that asking for help was admitting failure. And that was too hard.

Another one was that I did not know how to ask for help since I could not understand why some things were so difficult. Again it was a problem for me seeing the ease with which other kids did things. I know now that I needed step for step instructions and explanations, but how could I know that as a child? It simply terrified me when we started doing projects in school. There must have been instructions given, but I have no recollection of that. I just knew I had to hand in a project about a certain subject, and I had no idea how to do it. So I could not even try. I wonder how many times I got into trouble for not handing in work. 'Forgetting' books at home because I had no idea how to do the homework. And I never asked for help since I believed asking would get me into trouble.

I am sure people told me to ask for help with certain things if I needed to, but they were not specific enough. An example – if someone told me to ask for help if I could not cover a book with plastic, I would struggle alone for ages with cutting the right size plastic – cutting is not covering, and they only said to ask for help with covering. I can smile about it now, but that was the way my mind worked. And probably still does, but I have learned to cope better. I still often wish though that someone would break down tasks for me into small consecutive steps and tell me where to start and how, and when to stop. And most of all, I still need the assurance that to not know something is fine. My head knows that not knowing is perfectly fine, my heart still struggles with that.  

Slow processing speed

Slow processing speed. I like the sound of that, it sounds better than simply 'slow. It sounds better than 'not being able to think on my feet'. Better than 'talking nonsense'. But no matter how good it sounds, it feels bad. I need to come out and say this, admit it - I generally struggle with slow processing. I am intelligent and smart, but most of the time I need more time than others to process information and situations and dialogue.

It causes problems in conversations. Normal conversation needs to flow, and silences cause discomfort. My unfortunate way of coping with this, is to talk a fair amount of nonsense. To reply with superficial words and remarks, and often to say things that amazes me while I am saying it. Since there is no time for me to think in my slower way about what is being said, and time to say what I then really think, I reply with whatever pops up in my head. I don't like this, but I do like being included in a conversation. Mostly can't have both.

It causes problems in situations. I can't count the times someone has asked me "Why didn't you do this? Or that?" Which is usually what would have been the logical and sensible thing to do or say. And my answer is always "I did not think of it" and along with the incredulous looks, I berate myself. Why can't I just react in the obvious and smart way? It feels humiliating. I feel a strong need to defend myself and convince myself that I am smart. It is hard not comparing myself to others who can think on their feet and handle situations calmly and constructively.

It causes problems with decisions. I need time to think about decisions that have to be made. I cannot weigh up all the pro's and cons quickly. And that is something that needs to be done. I don't make decisions by what feels good or right, I need to approach it with logic. This can also make me seem unenthusiastic, but that is a topic for another day.

As with all things, this is probably not all negative, but I am struggling to come up with the positives. This needs more thought.

Eye contact

As a child I used not to be able to look anybody in the eyes for more than a few seconds. I can't remember if I thought much about it, but I can remember how extremely uncomfortable it was. As I grew older, I began to realise how important eye contact was, and I started working on making eye contact for longer periods – not because I found it necessary, but I wanted to communicate like other people did, I wanted them to like me, and I still believed that “one day when I grow up, I will stop being different”. I wanted to be seen as trustworthy, honest and self assured – all the things that seemed to depend on eye contact. So I forced myself to look others in the eyes when I talked to them. I could manage it after a while, but the price was high. Making eye contact made me hear less of what was being said. It took so much energy that I probably could read even less non-verbal clues than usually. I don't know what I looked like, but I can remember folding my arms tightly to help me feel a bit grounded and safe. I remember struggling to breathe, I can remember frowning. The hardest was keeping the dizziness under control. I can vividly remember the feeling of the room starting to 'move' from side to side. And my head with it – I had to concentrate on keeping my neck and my body still while feeling so dizzy.

I would not blame people if they thought then that I seemed awkward and unfriendly and rigid, the immense struggle was all on the inside.

On the whole I think it was worth it. I hope it was worth it. I have no idea if I am seen as honest and self assured, and I hope that people feel less uncomfortable talking to me than they would have if I did not make eye contact. And I do like looking at people without feeling dizzy.

Still, I do not think the eye contact I am making is the same as when two non autistic people do it. I often feel as if I am looking at somebody's eyes instead of into them. With everybody except close family, the eye contact is guarded without me trying to keep it like that. I think part of it is protecting myself. It often happens that I make sudden eye contact with somebody, usually a stranger, and that contact is real. The reason I look at them is usually because I realise they are upset in some way, and they catch my eyes before I can avert them. And then my guard is down, and I look into their eyes. And it feels like a wave of emotion that physically hits me. My throat closes, and I usually can't prevent myself from crying, I am not even surprised if I have a anxiety attack any more. It is like jumping right into someone's pain, and being burnt by it. It is overwhelming. And it is not useful – all that I can do is to get away, there is no way I can help or console or do anything for the other person.

I am autistic. I am supposed to have very little empathy and compassion. That is not true. I turn away and seem cold and aloof because I feel too much, I have to save myself from being consumed.

A favourite quote

"If you've met one autistic person, you've met one autistic person." I don't know who said this originally, or even if it was used with regards to autism when it was said first. One can replace the word autistic with any other word describing a group of people. It makes perfect sense.

In the light of this, it always amazes me when somebody says that they know an autistic person, and then proceed to explain that they are like this, they do that, they are not capable of this and that, they always..., and so forth. It happens quite often. I have even had people question my diagnosis because I am not exactly like the other autistic person/s they know.

Sure, we have many things in common, that is why we are labeled autistic. For example, most of us have sensory processing issues (and some don't). Most of us have difficulty with eye contact. But these things present differently in all of us. We are unique, just like people who are not autistic. I do not like being thrown into the box labeled 'THEY'.

The laughter challenge

I've set myself a new challenge - to have both my kids laugh in the morning before I leave them at school. I have always thought it important to help them feel good in the mornings, and I hated the few times during the years I had to leave them at school crying or unhappy.

But now I want to take it further to feeling good and laughing. And I am happy to say I have been mostly successful. And it works through to the rest of the day too. I have to find things for us to laugh at during the day, so that we can recall it the next morning and laugh again. Laughing with my kids makes me happy, I will never take it for granted.

Comfort zones

This is a new thought. Something that just occurred to me this morning on the drive home after dropping the kids off at school. It will need a lot more thinking, and a lot of time for my sub-conscious mind to work on it. Maybe writing it down will speed the process up and in a few weeks I can write a well thought out and interesting post about it. :-)

It occurred to me that I am extremely reluctant to step outside my comfort zone because I have to do it too often. It sounds like a contradiction, but it isn't really. My comfort zones or my safe places are my home, my car, my family, my mind. I have safe routines, habits, interests, conversations - things that cause no anxiety. To live a normal life with my DH and kids, I have to step out of this comfort zone every day. Mingling with other parents, communicating with the school, going to the library, doing the shopping, making phone calls, unexpected visitors - none of these are safe activities for me, all of them have the potential to cause considerable anxiety, and some of them always do.

So maybe this is one reason for my unwillingness to try new things and experiences outside of my safe places, it may be a feeling that it is unfair to expect me to experience more discomfort than I already feel on an almost daily basis. Something to think about - finding a way to be kind to myself without limiting myself.

Autism and the experts

When you want to learn more about something, naturally you go to the experts in that particular field. You talk to them, read what they say, read their studies - and in the process learn a lot. You may then think that you know a lot more about the subject.

Well, when you are interested in autism, and you follow this path, you may learn what the experts think about autism. You may learn a lot about what they think is wrong with autistic people. You may learn what they observe and hear what their conclusions are. But you will learn very little about the minds of autistic people. You will gain almost no insight in how we think and feel. You will not get an idea of the diversity within the autism spectrum and the uniqueness of every autistic person. You will be encouraged to see it as a disability instead of a difference.

I have to put a disclaimer here - I do think that most of the experts are really interested in autistic people, and wants us to have a good quality of life. I am not an expert-hater. But I am part of a large group of autistic people that feel we are not being heard or consulted, and it is frustrating.

I hope to share some of myself and my thoughts in this blog. It will be a challenge - I have so many thoughts, it is hard to condense some of them into words, and words that others may find interesting. But it is worth a try!