Saturday, December 3, 2011

Tired and discouraged

I have too many thoughts and too few words. Some words: tired, sad, discouraged. I can't blame anybody for not understanding. But I am tired of having to explain. Words cannot adequately explain and enlighten. Words are lifeless and theoretical. Why can't I send feelings and sensations to others and let them understand that way?


I am very fortunate, I found a therapist I trust, someone who understands about Aspergers, who makes me feel understood as well as respected. And safe. Safe - a small word, a very big concept. If only I did not feel so vulnerable and scared after each appointment. It is like being out in the cold and getting used to it. Then someone puts a warm blanket around you for an hour, and takes it away again. The cold then feels more intense and harder to bear.

I greeted my therapist, won't go there for 6-8 weeks due to the summer holidays. My head tells me it is fine, I will be fine. My heart feels like a safety net was taken away. It feels like my grasp is slipping, how will I hold on to the hope he has given me? I have been strong and coping for so long, why does the strength seep away now that my struggles have been validated and acknowledged?

Wednesday, November 16, 2011

Imagination, and lining things up

I loved marbles when I was a child.  I still do. My mom made us nice cloth bags with a drawstring at the top for our marbles, I still have two of those with my marbles in them. I always played alone with them, and never the usual games other kids played. What I did most of the time was line them up. In perfect rows, forming a perfect square. I knew exactly which places on the carpet in my room were flat enough to not let them roll out of line. I spent hours doing this, making sure the lines were perfect, swopping some marbles and swopping them back, and just sitting there looking at the marbles, picking one up and looking at it, putting it back in the right place.

I am sure an observer would describe that play as unimaginative, not varied or exploratory, and see the use of the marbles as not appropriate and non-functional. And if he/she were to ask me what I was doing, I would not have been able to tell them. Which would have confirmed their belief that the activity was purposeless or just ritualistic. And maybe there would be a little frustration or sadness to see the lack of enjoyment of toys?

How wrong that observer would have been! It would have been a lot sadder if I saw marbles merely as small round balls of glass to be played with in ways that other people have determined. Where is the imagination in that?

I can try to describe what was going on in my mind, but even now as an adult that is almost impossible. Which leads me to believe that what is seen as a lack of imagination could very likely be communication difficulty.

The marbles had what I will call, for lack of a better word, personalities. Each marble was a unique being, not really like a person, but just as complex and interesting. And I did not randomly give them these personalities, it was just something I perceived and knew the moment I saw a marble for the first time.
Almost as if the marbles told me what/who they were. And it wasn't something I could describe in words, I still cannot. But I can to this day pick a marble up, and feel who that marble is. I find it frustrating not being able to describe this in words. Because it is a rich, very interesting, very complex 'world' I enter when I look at marbles. In a way the lack of words does not lessen the experience, rather it stops the experience being limited and neatly boxed in by words. It is so much more than descriptions, it is feeling and sensation, and emotion - it can be breathtaking.

I lined them up because some of them belonged together, and some not at all. It would be very unsettling to put the small blue one next to the white one, the white one is too threatening, it has a confusing personality. It looks fine, but it cannot be trusted. The white one and the big yellow one has to go to the back, to be with the anonymous and slightly scary multicoloured ones. And between the vulnerable and special ones in front and those in the back, there has to a barrier of more neutral but less interesting ones. And when all are in their right places, I can pick up the special green one, and go into its world. What you will see is a child looking expressionlessly at a marble. While inside there is a story playing out. Not one with a beginning, middle and end and with specific things happening, but a story filled with realisations, deep emotions and intense sensations. What a pity these stories cannot be shared!

I did not like playing pretend games with other girls. I had such a rich imagination and intense sensations, that playing dress-up or tea parties or school made little sense to me. To me it felt like imitating others, following others' ideas, and conforming to their ideas of what should happen. While being unable to describe my own wants and ideas. I dare say it felt unimaginative and boring to me. I do realise that children learn through play and that important social lessons are learned when playing in these usual and appropriate ways. I missed out on that and I guess it contributes to my struggles in the social world. But I have no regrets. My world was rich, filled with overwhelming imagination and sensations, joy and sadness, colours and sounds, all hidden to observers. So my plea would be - when you look at an autistic child, please do not assume that there is nothing going on inside just because you cannot see anything and because they cannot share what they are experiencing.

Wednesday, November 2, 2011

Your world and mine

I have been visiting your world for all my life. And I did what you required of me. You have come to believe I am one of you. You believe I live in your world. You believe I am like you. But I am still a visitor. I go back to my world often, and cannot invite you to come with me. My world is invisible to you. And that is a pity, since you will never see the spiraling joy, the dark and silent deep, the wonder, the fascinating parts of the whole. And you will never see that in my world I am beautiful.

Wednesday, October 26, 2011

More on overload

Just thought to write about it while it is happening. As I sit here, almost every sound I hear feels wrong. The washing machine, the dog licking something, a bird making a repetitive sound outside - all too irritating. And the last thing I need to hear now is voices. I cannot listen to anybody right now, even the radio would be too much. A little while ago I had to listen to someone at school telling me something, and it took so much self-control to stand still and smile and respond while my stomach was hurting and my skin was crawling and I could feel every part of my clothes against my skin. It is hard to explain - it is not the person that I find irritating, nor the things he/she are saying, the problem lies with me and my senses and the inability to tolerate all the incoming stimuli. The muscles in my upper body feels funny, uncomfortable. You know that feeling you get when someone drags nails down a blackboard? I feel like that - not that intense, but constantly on days like this. Sounds, voices, textures make me cringe. And all you can see from the outside, is an irritated, unreasonable, angry woman.

Sunday, October 23, 2011

"It's all about us."

Wow. I stumbled onto a blog written by a woman with a husband whom she believes has Aspergers. She also has female friends she believes has Aspergers. I am not going to link to that blog, and I am not going to reply to her posts.

But I find it upsetting to hear how someone goes on and on and on about how we do not care about others' feelings at all and how it is all about us, and how 'normal' people should have no expectations of caring, common sense and empathy from us.

Just wow. I am not going to read anything more on that blog, not going back there again.


I recently had the worrying experience of coming very close to a meltdown in public. Worrying because it would have been very embarrassing for me and the other people present. I just prefer to keep such intense reactions to myself.

But even more worrying because I did not see or feel it coming. I went from feeling calm to getting extremely agitated within a few minutes. And I suspect it is the result of a lifetime of suppressing my reactions to intense sensory and social input. I have learned to hide this not only from others, but also from myself. Before my diagnosis, I just believed it was wrong to get irritated so easily. And that I should try harder to stay calm and not act like a child. I now know that there is nothing wrong with getting overwhelmed, but lifelong habits and ways of thinking are hard to overcome. I have become so good at pretending that I feel OK that I actually believe it myself.

What I need to learn is how to identify the earlier stages of overload, to recognise the building stress. In hindsight, I can see the things that led to me being overwhelmed, but in the situation all the dots did not connect. I need to know when just taking a break will be sufficient and when leaving a situation is the best thing to do. I need to look more carefully at what is happening, how it is affecting me, and then learn to predict how much more I can handle.

And even more important, I have to be kinder to myself despite the fact that others may not understand or become impatient or feel inconvenienced. I spend a huge amount of energy accommodating and pleasing other people, probably too much energy. And they do not know this, how can they when doing the same things do not require nearly the same amount of energy of them? That is probably why they cannot understand my frequent irritation or fatigue. I work hard, I get tired, and I owe it to myself and to the people around me to insist on getting more down-time. 

It is scary though. I find it hard to read people, to pinpoint what they are really feeling, but I am good at picking up negative or positive vibes - feeling them, but not understanding them. So when I state that I do not want to do something, or want to be alone, or do not enjoy something I often feel the negative reactions and not knowing what it means makes me very anxious. Is the other person feeling irritation? Disappointment? Anger? Resentment? Rejection? Concern? I have no idea, and since people mostly respond with the universal and frustrating "It's OK", I am left feeling confused and guilty and insecure. 
And instead of using my down-time to relax, I worry. Maybe I need to be more honest and try to describe what I feel and experience and what my needs are. That is hard though - the sensations and feelings I have are so many times not connected to words at all. Take the imminent meltdown - if you wanted to know how I felt, I would have to show you the physical reactions I had to suppress, I cannot describe in words how I felt.

What I want to do is accept that my needs are important, and that even though it may inconvenience others, getting what I need will benefit them also. This is a continuing education - teaching both myself and the people around me.

Monday, October 17, 2011

What if trees knew?

 What if trees knew that which we don't?
What if trees see more than we do?
What if trees see the generations come and go
And gets bowed down by the sadness they absorb?

Would we cut them down in anger
Try to wipe out their knowledge
Ignore their wisdom?

Would we fear the seeds they spread
The roots that remain and feed the earth
We try so hard to destroy?

Thursday, October 13, 2011

Analyzing or not

When it comes to people, behaviour, ideas, concepts - I love to analyse and go into detail and look at things from all possible angles. And questioning everything, challenging beliefs and finding new ways of looking at things. Unfortunately most people find this tiring, unnecessary and even offensive, so I have learned to keep my thoughts to myself except for the times when I am with someone who likes to analyse with me. I have been accused of nitpicking, picking everything apart, finding fault, being too critical, analyzing things to death - seems people really do find it irritating. But I am really not trying to be difficult - that is just the way my head works. I find it energizing, fun, and there are few things more exciting than coming to new insights, thinking new thoughts, challenging your own beliefs - there is always so much to learn and discover. It saddens me that I can find so few people who will share in the fun!

Interesting then that I really do not like analyzing and discussing some important things - things like music I love, favourite books and films. I have always loved reading and need books around me. I have favourite books I read over and over again, and find reading a good book one of the most exhilarating and absorbing experiences in life. But I have never had the desire to join a book club, and have a huge aversion to discussing my favourite books with anybody. A good book is like a friend, I have a relationship with it, a unique experience of it, just seeing a loved book makes me feel happy and somehow secure. How can I then put it aside and discuss it with others? It would feel like discussing a friend behind his or her back! I also do not like reading popular books while they are on the best seller list and everyone is eager to read them. I like waiting until the hubbub has died down, the readers have moved on - and I can sit down with the book - just the two of us, uncluttered by opinions, discussions, reviews. It is almost as if I feel I cannot form a relationship with a book when it already 'belongs' to so many other people - it cannot be mine alone.

I love memorising favourite sentences or paragraphs in books and repeating them to myself, it makes me feel - I cannot name the feeling - but it is almost like hugging myself, feeling flutterings of joy and pleasure inside. Sometimes I will say a favourite sentence in my head and laugh aloud with pleasure, or do my little dance. It makes me happy.

Films. I prefer watching them alone. Or just with somebody I know well, and whose reaction to the film I can predict. My experience of a film is greatly diminished when I watch it with others. I am too aware of their reactions and cannot ignore it. I cannot separate myself from other people's reactions. And I am also aware of my own reactions and how it will be perceived. When I am alone and embarrassed for a character, I can turn my body away and peer through my fingers and even moan a bit - when there are other people present, I don't want to do this and I get really uncomfortable keeping my 'pose'. And keeping my pose takes away a lot of the enjoyment too. I haven't been in a movie theatre in many years. I would so love to see good films in a theatre, but preferably in an empty one and that is not possible.

Music. I have no regrets about never having had music lessons. I love music, and need to listen to music every day, but I really don't want to understand it. There are so many things I hear in songs that I know can be analysed and explained, but I will never ask anyone to explain it to me. I love the mystery of it. I like not knowing, just hearing and experiencing the feeling it creates in me. For that reason I don't like discussing songs with people. My husband has a good ear for music, and high quality and mastery in music are important to him. Sometimes when we listen to a song I love, he will make a remark about instruments not being played well, or the sound quality not being good, or a singer being off key or something. And without fail it upsets me. It takes away some of the mystery, and again I struggle to separate my experience from his. I wish I knew how to do that - to listen to others' opinions on things I love without becoming upset and feeling that it takes away something from my own experience.

I don't know how to end this post. I can still hear the echoes of language teachers' voices over the years - insisting on good conclusions/ending paragraphs. But there - I will just stop writing now.

Thursday, September 15, 2011

Another thought on empathy

Yes, the controversial empathy word. Just something that I thought about today while I was driving somewhere:

I am autistic, and I have difficulty when it comes to reading non-autistic people. I find it hard to know what they feel, and sometimes it is hard to understand why they feel the way they do. And personally I also often find it hard to know how to respond once I do understand, because their needs are different from mine. Aha, you would say - I lack empathy.

But then - non-autistic people have difficulty when it comes to reading autistic people. They find it hard to know what we feel, and sometimes it is hard for them to understand why we feel the way we do. And they also often find it hard to know how to respond once they do understand, because our needs are different from theirs. So would you come to the same conclusion - that they lack empathy?

Probably not. Why - does the difference lie in numbers? Because there are so many non-autistic people, their difficulty is not worth noting, and because we are a minority, our difficulty is a symptom of a disorder? I find it hard to get my head around that.

Thursday, September 8, 2011

Sharing of emotions indeed

I needn't have worried. The day started off yesterday with me being irritated by my socks, my belt, my shoes, my hair against my face. I was scarcely out of the gate when I had to stop and take my shoes and socks off and put them on again, and put some cream on my face to stop the feeling of hair on dry skin. It was the first hot day of spring yesterday, and I did not like it.

I had an hour and a half to kill in the city before my appointment, so decided to go to a nearby mall and get some needed things, and also to buy myself a T-shirt as the day was turning out hotter than anticipated. In the third shop I went into I finally found a shirt that did not feel synthetic or too flimsy, was an acceptable colour, and really looked nice. I was feeling a little nervous already, I don't like clothing stores, they seem so full of assertive staff and determined women shoppers. And mostly awful clothes. So I started wandering around, surreptitiously trying to find out where to pay for the shirt. It was a huge store, and I just could not figure out where to go. No handy signs saying "Pay Here". No other buyers in a hurry to buy anything so that I could watch and follow them. I saw a counter at last, but soon saw it was just for accounts and admin. By then I was almost crying, and felt like hiding from the staff instead of asking them for help. I knew I would not be able to talk, so I gave up, put the shirt down and fled. I did not want to go to the rest rooms, because I did not want to lose the last control I had, if I started really crying, I would find it too difficult to stop, and then I would be stuck in a cubicle, not wanting to come out.

Luckily I saw a coffee shop that was a little out of the eye, and mercifully rather empty. I sat down at a corner table and asked for coffee, and then also ordered something to eat. And I had a book with me, so I ate and read and tried to stop crying, concentrating on deep breaths. I am so so grateful that the women serving me made no comments and asked no questions. I don't like crying in public, and I cannot handle kindness or curiosity when I do.

I was so unhappy. Why can't I do a simple thing like buying a t-shirt for myself? Why am I unable to ask for help, why is it so hard, and most of all, why am I so scared?

I sat there until it was time to leave for my appointment, not having the courage to go into any other stores. Drove to the consulting rooms, went inside, and started crying as soon as I sat down. No intellectual, cold discussions as I feared. So in the end the fear and upset was worth it, it enabled me to share. We spent some time talking about fear and anxiety, and my feeling that I had failed once again instead of being proud of trying something I have always found difficult. I don't feel brave, it is a nice thought though. We also talked about my fear of looking deeper at my feelings and anxiety, and agreed that we will not try for now, I do not want to spend the precious hour every month being hugely upset and afraid. He has promised to email my some things to read about anxiety, which I am feeling a bit skeptical about - I have read lots about it already, and have an aversion to any 'self-help' writings. We'll see.

Tuesday, September 6, 2011

Sharing emotions

I am seeing the psychologist again tomorrow and I am worried that it will turn into an intellectual discussion about my feelings and challenges. That is the way it always seems to be. How do I show what I feel? I sometimes feel my two default emotions, and the only ones except joy that I can share or show, is irritation and anger. I wonder if, feeling so uncomfortable showing any emotion in front of others, all the suppressed emotion just come out as irritation when it gets too much?

I am beginning to realise I find it very difficult to name my emotions. Emotions to me are physical experiences, no words attached. And when I try to name the emotion, it either slips away out of grasp, or it turns into intellectual analysing. I've never really thought much about this before. I've been working in the garden now, thinking about different situations and how I felt - and it is so hard. It almost feels as if my brain wants to stop me thinking about it, and the only 'name' I can give to negative emotions is 'I want to get away'. I don't know if that makes sense.

Saturday, August 27, 2011

Getting stuck on one question

I have been thinking a lot about my next session with the psychologist. Thinking about things I may want to talk about, questions I may want to ask, things I want to work on. But my mind gets stuck on only one question and I cannot think of anything else:

Will life always be this difficult, will fear always be my companion?

Being liked, and passing

When someone likes me or wants to spend time with me, who is it that they like? The me that passes as normal? Will they still like me if I stop working so hard to pass? Do they even know how hard I work? Will they still like me if I smiled less and asked more awkward questions? Will they like the real undiluted autistic me? The me that does not want to greet people, wants to bite her fingers and rock from side to side, who frowns when she thinks, who thinks all the time, who are unsure and anxious many times, who thinks that people are hard to understand, who are perplexed by the things they do and say, who wants to interrupt people because it is hard to know anyway when it is her turn to speak, who wants to leave places suddenly when the sounds bother her too much, who gets overstimulated and irritated and agitated so often?

I don't know if this me will still be liked or accepted. And not be pitied or avoided. And I want to be liked, that is why I still pass.

Friday, August 12, 2011

Being understood

With the help of my husband, I found a psychologist who are knowledgeable about Aspergers. I had an hour long session with him on Wednesday. During the hours and days leading up to this I felt very anxious and apprehensive. To begin with I felt unsettled because the day would be a break in my usual routine. And then I did not know what to expect at all, I was also scared of being disappointed once again.

I am very glad to say that my fears were unfounded. It is hard to describe what an intense experience it was talking to an expert who understood, validated and knows more than I do about Aspergers. I was close to crying the whole time, but held that in because I did not want to waste the precious time on too much emotion.

I have so many thoughts and feelings running through my head now, I so wish I could hide somewhere alone for a few days to rest and start processing it all.

One recurring thought, accompanied by a wave of emotion every time, is "So this is what it feels like to be understood!" It is overwhelming. I do have people in my life who love me and accept me and try to understand me. It is a blessing, and I appreciate it more than I can express. But in all these relationships I am the expert when it comes to Aspergers. Naturally I usually end up explaining and educating, and mostly in a detached, intellectual way - sharing emotions and fears is too threatening when I am rather sure of not being understood. And these explanations can so easily cross a line somewhere in my head and start feeling like excuses. After a lifetime of believing I am just not trying hard enough, I still sometimes feel as if I am just trying to justify myself. Trying to convince myself and others that I am OK and trying. And when I achieve something, it is not really satisfying first having to explain why it is an achievement before getting some appreciation. I really do not want to hurt my loved ones, I value them so much. But to talk to someone who understands without any explanations, who applauds my achievements and sympathizes with my fears and struggles - it took my breath away.

We talked about many things, and once I have processed more of them I will write about it. It is hard to put my thoughts down now, I feel very emotional and tired.

I want to end this post by saying thank you to my wonderful husband, who cared enough to make this session possible, something I would not have been able to do on my own.

Wednesday, August 3, 2011

A Positive Conversation

I stole this heading from another blog. Like that blogger, I also had a positive conversation about autism. A dear friend invited me for coffee this morning. I have not been going out much lately, retreating into my own world. So this invitation resulted in as much anxiety as pleasure. To be honest, it was only my aversion to making phone calls that prevented me from cancelling.

But I did go, and it turned out to be a very special visit. As always, my friend and her husband made me feel so welcome and accepted. My usual irrational thoughts like "I have nothing to say that will be of any interest to anybody" faded away, and I had a lovely time. Then without my prompting it, my friend asked me about my blog, and a conversation about autism and my experience with it followed. I cannot adequately express how much this meant to me. I told her, among other things, that I was tired of trying so hard to be someone I am not, and I felt comfortable saying it. I am scared to tell people this, for fear of being accused or suspected of being 'fake'. To be able to say it to an accepting friend with an open mind was such a relief.

I feel calmer this afternoon than I have been for quite a while. My racing thoughts have slowed down a little, and I am intensely grateful for friendship and the gifts it brings.

Wednesday, July 20, 2011

Conversation and friendship

I recently read something about conversations leading to friendship that really resonated with me, I apologise to the author, I will mention  him/her when I can find it again!

I have always had problems knowing what to talk about when I meet someone. But I have worked hard at it, and learned to ask questions, try to prompt people to talk about themselves and their interests, even make some small talk. All this makes the first conversation with someone a lot easier. My problem is that with most people I meet, every conversation feels like the first one, I just cannot manage to follow up on the first time we met.  Thus every time I meet that person, I feel more awkward and have less to say. For this reason I feel more at ease among strangers than people I have already met.

Other people seem to just have conversations and this eventually leads to friendship or at least feeling somewhat comfortable with each other. I wish I understood this process. I am very grateful for the few people in my life who persevere and somehow ignore this awkwardness. I am glad to say that I do have friends. Not that I ever call them to chat, or drop in for coffee or share much -  even thinking about that makes me feel anxious - but they are people who accept me and my aloofness and keep talking to me and inviting me to visit them.

I believe I can be a very loyal friend, I can be very accepting, forgiving and not judging, and will never gossip or intentionally hurt a friend. I just have a difficult time with friendship 'maintenance' - the calls, chats, gifts, visits and the intimacy that I imagine friends usually experience.

Sunday, July 3, 2011


Rachel Cohen-Rottenberg has created a new and much needed website about autism and empathy. I will definitely be reading everything posted there, and will thank Rachel for doing this. I often read her blog and she has helped me gain many insights and gave words to many of my unexpressed thoughts.

I have some thoughts on empathy I would like to share. I am not going to attempt to define it, the term has different meanings for different people and people do not adapt their thoughts to dictionary definitions anyway. However empathy is defined or seen, the widely held belief that autistic people lack empathy is still too common. And it leads to so many negative ideas: "they lack empathy" morphs into " they do not care about other people's feelings", "they are oblivious to others' feelings", they do not recognize that others have feelings and ideas that differ from their own" and even " they only care about themselves".

What boggles the mind is that there are so many autistic people speaking out and contradicting these beliefs, and still people and professionals dealing with autistic people and their families hold on to these myths. Why? Is it unwillingness to admit that they might have been wrong all along? Is it that they cannot easily observe the empathy we say we have? Or can it be that too many people are still not willing to really listen to us? (Making a mental note to explore this in another blog post.)

I may ramble from this point on, trying to make sense of my thoughts, some that have never been expressed before.

I admit that there are times when I do seem to lack empathy. I do retreat and shut myself off from others' feelings. But this is a self preservation tactic, not an inability to relate. Being exposed to emotions can be exhausting. And overwhelming, since I can have difficulty regulating my own response to emotion in others. I recall a recent incident. I walked my daughter into school one morning, and left as the bell rang. As I rounded a corner, I came upon a child furiously wiping away tears and trying to compose herself before entering the building. The encounter was unexpected for both of us, there were no barriers up between us. Just the emotion. We stared at each other for a moment, and then she ran into the school building. I ended up in my car in the parking lot, crying, gasping for breath, on the edge of having a panic attack. This shows that I have to protect myself; reactions such as these are very upsetting and many times probably out of proportion to the emotion perceived.

Sometimes the emotion in a situation is not that easy to read. People often hide their feelings behind a social mask. Couple that with my difficulty in reading people, and I am left with the confusing sense of something being wrong, but not knowing what it is. That causes discomfort and anxiety, making communication even more difficult than it already is. I find small talk and conversation very hard when there are undercurrents I can feel but do not understand. So someone may feel the need for empathy in a conversation, and I just become more and more withdrawn due to my confusion and frustration. This certainly may look like a lack of empathy.

One specific thing I cannot handle at all, is candid camera type of shows. The intense discomfort I feel when I see someone being embarrassed or humiliated, even if only temporarily, is almost like pain. I remember the very first candid camera film I saw. I was about 8 years old, and we were shown the film in the school hall. The kids around me were laughing, and I felt just horrible. I remember crying and wanting to go home, and this upset stayed with me for weeks. As an adult I still find it painful, even while knowing that my reaction is over the top. I cannot separate myself from the embarrassment I see, I make it my own and feel awful. I have read that many other autistic people feel the same way about these kinds of shows, which is reassuring in a way, I have always thought I was alone in feeling like this.

I have many more thoughts, too jumbled at the moment to write down. They will have to wait for another post!

Monday, June 6, 2011

Therapy, or validation?

I often wish that I could find a good psychologist or counsellor to talk to on a regular basis. Recently I have begun asking myself what the purpose of this therapy would be – which problems do I want to work on? What would the goal of this therapy be? I have thought a lot about this, and so many times the word 'anger' comes into my head. But it is vague, and I probed deeper. Why am I angry? Do I just struggle with anger management? Have I not learned the appropriate skills to deal with frustration?

No. I don't think that is what it is. It is not just a skill I lack. Neither is it a disorder of some sort that has its origin in my head somewhere. I do not need someone to try and teach me skills and I do not want to discuss my problem with anger. What I need is VALIDATION. I need someone to really listen to what I have to say about my struggles and my fear and my anxieties and depression – and then to confirm what I know is true – that it is no wonder that I react this way to the world. That it is normal to be anxious when you live with so much fear and uncertainty in a world that is often very hard to understand. That it is normal to feel depressed when the loneliness and the feeling of never being really understood threatens to overwhelm you. That being who I am and what I am is OK, and that all these problems I have are normal reactions and not isolated disorders that have to be treated and cured.

I was 16 when I had to go for counselling the first time. I was diagnosed with depression, given anti-depressants and had to go for a few sessions with a psychologist. I found it an interesting experience on an intellectual level, but it made no difference in my life. I did not have the words, the insight at 16 to explain my feelings. I remember him asking me what has happened in my life to make me this sad. And how did it start? I did not have the words to tell him. But I can remember clearly the evening the so-called depression started. It was one of the first days of the new school year, I was sitting on the floor in my room covering school books when I was suddenly overwhelmed by fatigue. Overwhelmed by the thought 'I just cannot do this any more'. I believe it was simply the result of years and years of fear and loneliness and being misunderstood.

I lived with so much fear and anxiety for so many years, I think it was no wonder my brain finally decided it was enough. As a child, the sound of fear was the first bird calls very early in the morning. Waking up and hearing the birds signalling the start of yet another day was enough to make me feel nauseous. I felt like that every single school morning for years and years. The smell of fear was the peculiar smell of sandwiches and school bathrooms that filled the school halls. The release from fear was the sight of my mom's blue Volkswagen waiting to take me home.

So whatever you want to call it – depression, fatigue, a breakdown – I believe that was a very normal reaction. Not a chemical imbalance that had its origin in my brain because my brain was somehow flawed. But that was the way my depression and anxiety was seen by all the therapists I saw over the years. They saw a flawed individual that they needed to treat with medicine and teach to think and be more positive. And my reaction to this was anger. Anger at being misunderstood once again, anger at not being heard, anger at a flawed world who distrusts differences and turns it into diseases. Therapy was supposed to help me, but mostly it made me angry.

Only once, the opposite happened. I saw one therapist for just about two months, and those two months worked magic. I was 20 years old at the time, and could not yet make eye contact with anybody for more than a few seconds at a time. But I could look this man in the eyes while he listened to me, and it carried over to other people. Those months motivated me to work on eye contact. And there were no anger. Why? Because I felt validated. I felt that the therapist was interested in me, and liked listening to me, and most important – I did not feel like he was trying to fix anything, treat anything, identify problems, teach me anything.

And that is what I want. Now that I have the words to talk about my childhood experiences and my current struggles, I want validation, not treatment.

Monday, May 23, 2011

Expressing Joy

I read something on another blog about how uncool it is to be excited. Unfortunately that is true for too many people. When you look at young children, you see joy in motion. They are not inhibited, and it is often so easy to see that they find many things immensely exciting - they shout and laugh and run and dance. But somewhere during childhood things change. Such display becomes very uncool, and what child wants to be seen as uncool? Look at teenagers - it often seems that being blasé and bored and unenthusiastic is what that age is all about. I know that that is mostly a front, put on to impress your peers with your sophistication (only speculation, but that is what it looks like). But it seems such a shame that the little fires of joy are being put out so often because it is simply not cool to show excitement and wonder.

And that carries over into the adult years. It is fine to calmly appreciate something, but shouting for joy will probably be frowned upon in most circumstances. I allowed myself to be inhibited in this way for too long. And I am very happy to say that with the help of my children I am letting go of this particular inhibition. I do have an enormous capacity for joy that seems almost childlike, and I am not going to hide it any more. For me joy is an intense physical feeling, and standing still while experiencing it is almost impossible. Of course it is easier at home where no-one is looking on. I have a little dance that I do when I really enjoy something - almost like running in one place. My kids love it, and I love it that they love it. It is also easier to show when I am out and about with the kids. They are still young enough to mostly not care what others might think - and we have lots of fun on outings. I am glad to say that I do not care what strangers think about a 42 year old woman who jumps up and down, hugging herself and laughing because she finds a fish or a bird or a cloud incredibly beautiful. That physical surge of joy I experience is a gift, and I plan to celebrate it fully. I will savour the times when I feel the joy start in my tummy and rush upwards to let me catch my breath and spread into my arms and legs to make me dance.

I do know that my kids will grow up and will want to look cool in front of their peers, and that they will probably find me very embarrassing, but I hope to instill in them the knowledge that life is full of beautiful and exciting things, and enjoying it to the fullest is not uncool or wrong. Life is also full of pain and struggles, we simply have to magnify and celebrate the joy we are so privileged to feel.

Thursday, May 12, 2011

Being alone

When I am alone, I am not


None of these labels are relevant when I am on my own.

I like being alone.

Thursday, May 5, 2011

That little voice in my head

I know it is not a good idea to only read and dwell on information and perceptions that agree with your own beliefs. It strengtens bias and creates polarization of perceptions and beliefs. But I am contemplating doing just that. When reading blogs and discussions about autism, neurodiversity and the search for a cure, I prefer to look at things from all possible angles. I like to widen my own perspective, and want to learn from others. I am very aware that I can see only a small part of the picture. Thus it is really fascinating to read the wide variety of opinions, about the personal journeys of struggles and joy and discovery and challenges and victories.

But I have a vulnerability that is threatening to imit my searches and interest. I have lived most of my life without a diagnosis, and with the firm belief that I am just a weakling, a failure, lazy, irresponsible, untrustworthy and too scared to really live. It is very very hard to silence or ignore that voice in the back of your head after hearing it for so long. And now when I venture into the debate about autism and Aspergers, every so often I come across the rather wide spread opinion that I am really a fake. Because I was not diagnosed as a child, managed to be successful in school, obtained a degree, got married and have children - surely saying I have Aspergers is just an excuse. An excuse for not facing up to my responsibilities, complaining that society does not accept me, a handy excuse for not standing on my own two feet, an excuse to complain about my own paltry struggles.

And every time I read these well articulated opinions, the little voice in my head starts shouting "I told you so!"

Why not stop reading? Because in these online communities, I have found acceptance, and every now and then the discovery that my experiences are not unique, I have found understanding and the opportunity to talk about things that I find infinitely interesting but cannot discuss elsewhere. The temptation to stay within my comfort zone here is huge, but I cannot. I will keep reading as widely as possible, and fight this stubborn voice in my head.

Wednesday, May 4, 2011

internal dialogue

don't fold your arms - smile - no, don't frown - greet the woman looking at you - no, with an audible voice - put your handbag down - is that an appropriate place? - deep breaths - ok, what now - can someone please tell me what to do - relax your hands - what am I supposed to do now - the music is so loud - move, do something - smile - where should I stand - everyone looks so efficient - hands are sweating - how long before I can leave - I feel in the way - "hi how are you!" - "fine thanks and you" - hate it - don't feel fine - don't clench your teeth - please tell me what to do - why am I here - smile - why is everybody talking so loudly - calm down - deep breaths - don't cry - can someone please help me - I want to go home

Monday, May 2, 2011

Meltdown hangovers

I have coined a new term, just for myself – meltdown hangover.

I don't have frequent meltdowns. I am grateful about that, because they are draining and scary and always leaves me with this hangover. The ones I do have are always in private, and it is not something I am ready to share much about, it is too personal. And somewhat embarrassing.

But what I can share is how I feel afterwards. I think drugged would be a good word to describe it. My brain feel slow and foggy, I am more clumsy, and I feel exhausted – everything is an effort and I have to concentrate to keep moving and doing what I am supposed to do. Sometimes it feels like my hearing is affected, and there is almost always a lingering headache. It would be easier just to sleep in a silent and dark room until I feel better. Trouble with that is – the hangover often lasts for at least a day.

This may be one of the reasons why I hate crying. Crying needs to be controlled, because if for some reason I am already feeling overwhelmed or have sensory overload, crying can easily escalate into a meltdown. One preventative measure is staying around people. I cannot lose control in front of others, so that helps me stay calmer. Deep breaths, concentrating hard on something else, furiously cleaning something or digging in the garden, it all helps.

You might ask why keep the lid on all these intense feelings? After all, a good cry is supposed to help you release stress and feel better. Unfortunately I do not experience it like that. Losing control is very scary for me, and I do not feel better afterwards.

Monday, April 4, 2011

Autism awareness

April is autism awareness month. I am reading as much as I can to see what people are doing to promote awareness; autism is one of my special interests after all! And as so often before, I notice that emotions are running high. Some neurodiversity proponents are getting upset with the 'curebies', and some people seeking a cure for autism are dismissing those who say they want acceptance, not a cure.

For those of you not familiar with the term neurodiversity, here is a definition I grabbed off the web:
"Neurodiversity refers to the idea that people experience the world differently based on their neurological attributes. It is most commonly applied to people with autism-spectrum conditions such as Asperger's Syndrome, but has also sometimes been applied to describe certain mental illnesses, learning disabilities, and other neurological differences. The neurodiversity movement parts company with the disability rights movement in that it does not recognize neurological differences as disabilities, but rather as equally valid, unique, and socially beneficial neurological experiences of the world that should be celebrated."

On the other hand, many people see autism as a disease, a disability, something for which a cure should be found. It is easy to see why these groups get upset with one another. I have never really participated in these discussions, partly because I did not feel strongly drawn to either side. But all this bickering and fighting is bothering me enough this time to try and write about it.

Firstly, I think both sides are doing lots of things right, and some things wrong. The people wishing for a cure – I believe they are pushing for money to be made available for research into autism -that is good. They want their kids to be happy, and lead fulfilling lives – that is good. They want to spare other parents the pain and frustration they experience, also good. But calling autism a disease and a disorder – not good. Speaking about tragedy and epidemic and crisis – not good. Dismissing the voices of verbal autistic people – not good.

The neurodiversity proponents wants acceptance for autistic people and others with differences – that is good. They want autistic people to be happy and lead fulfilling lives – that is good. They want support structures and resources for autistic people – that is good. Calling people in the other camp 'curebies' – not good. Calling them selfish – not good. Denying them the right to their feelings and frustrations and wishes – not good.

How much more could be accomplished if both sides could talk to each other in a respectful way? Work together to find meaningful solutions?

You may ask in which camp I feel myself comfortable. Hmm. I think I lean towards the neurodiversity group. Which does not mean that I am shooting the cure group down. It is just that I believe there must be a middle ground. I am what is called 'high functioning'. Which means that I can live independently and my differences do not make it too hard for me to function in society. But I still have Aspergers, and I like being like this. I do not like the majority's reaction to my 'difference', but I like who I am. I do not want to be cured. I also do not like being dismissed because I am high functioning. It seems that I am not autistic enough to be taken seriously, just as nonverbal autistic people are too autistic to be listened to. Thus people feel they have the right to talk for us.

If you want a cure for autism, what exactly it is that you want? Do you want your child to sleep better? To eat healthier without a battle? To stop hurting himself and others? To not have such a huge impact on your family life? To live a life without being judged? To be able to live independently as an adult? I can understand all these reasons. I am honest enough to admit that if I had a child with some of these challenges, I would be exhausted and tired and probably hoping for a 'cure' too. Who knows? We do not live in an ideal world where people are tolerant of differences, and the reality is that autistic people are sometimes very stressed and unhappy – not necessarily because of who they are, but because of the reactions to who they are.

I can only talk for myself when I say I do not want to be cured. I work very hard to 'fit in', it is a choice I made. But it comes at a cost, and some of my uniqueness is lost in the process. And I think that is sad. If I was to be cured, I would lose most of what makes me unique and special. Would that be a good thing?

Wednesday, March 30, 2011

Special interests

Someone shared a link today which gives one lots of food for thought. If you'd like to read:

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.

Thursday, March 24, 2011

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.  

Tuesday, March 15, 2011

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.

Sunday, March 13, 2011

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.

Thursday, March 10, 2011

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.

Wednesday, March 9, 2011

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.

Tuesday, March 8, 2011

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!