My mother is my Kryptonite

In this respect I am Sheldon Cooper. My mother is my Kryptonite. She has powers over me that no one else has. Sometimes I am resentful of that. She can make me do things no one else can make me do (I suspect (and not in a bad way) that is because no one else is prepared see me upset as much as she is prepared to see me upset). I find this kind of relationship very challenging and I am only just finding ways to feel safe about it. Its hard to admit that because I can apply a kind of 'matrix of good parenting' to my parents and I can see how they tick all the boxes. Sometimes I make such sensible choices and am so very responsible that it must seem to other people that when I make 'senseless choices' (like not to open my mail) I am just being difficult and that I am making a choice to be so. Some people think the solution is to tell me to 'just do it'. Or they think that I will learn from any hardship that results from my difficult choice. But I don't seem to. Telling me to 'just open' the mail doesn't result in the mail being opened. Telling me I have to invoice people when I do a job or I won't get paid doesn't make me send invoices. Many of the aspies I know have a few similar quirks (can't wear certain colours, can't say certain words, can't walk past certain objects, can't accept gifts, can't throw stuff out, can't open mail, can't post mail, can't answer phone, can't make phone calls - these are just examples I've come across but I'd love to hear of other resistances that are a bit unusual) Lots of us have people in our lives who truly believe that the solution is to find a way to make us 'face our fear'. Im starting to think that this makes it worse. I have spent my whole life working really hard and not getting paid properly because I can't invoice people. If I put myself through hell and allow the rest of my life to become manic then at best I can invoice maybe 50% of my clients. I have spent thousands and thousands of dollars on 'learning to overcome the issue'. Nothing has worked. I have some theories about why (eg I've noticed that most resistances do seem tied up with sensory issues or central processing issues relating to order etc) but Im so exhausted from trying to manage the impacts of working full time and only getting paid for half the work I do that it just doesn't matter any more. I just want it to end. Last year my Mum realised (after 40 years of thinking that eventually I would be able to manage this stuff) that the simplest solution is to send the invoices for me. I don't remember ever having been more relieved in my life. Im so stressed out just thinking about this Im going to stop typing now and go and build a turtle pond - gardening is a verb.

In the moment

I see very clearly that there is an important role for people living with ASD to try and articulate their process as much as possible.  In the moment I often come across as very critical of people or situations. I think thats because I like puzzles. So in every situation I see a puzzle and more puzzles within it. And in trying to solve the puzzles I am looking for the pieces that don't fit, in order to reconcile all of the other pieces, building bridges in my mind. As a kid, I could never understand why people thought I was arguing all the time. In my mind I wasn't having an argument at all, I was just stating the facts. The fact that the other person didn't understand the facts was disturbing to me. As an adult I have learnt to observe other people and even at times pretend that it doesn't matter to me when someone doesn't understand the facts. Im also a bit more able to understand the rules behind the mechanics of conversation. I speak: you speak: I speak : you speak and try and remember to show them you are listening. ("Good listeners don't say "I already know that". Good listeners make eye contact. Good listeners don't interrupt. Good listeners don't talk too long when it's their turn") Here's a tip that Tony Roberts taught me during the many long hours I spent sitting in his front room practicing that kind of stuff. If you look at someone's nose or just above their nose between their eyebrows, they don't know you aren't looking in their eyes. Try it. It works.    

Meltdowns

I understand that non-aspies people find aspie meltdowns very challenging. I wish people understood what it is like for us. Even now, I live in fear of having a meltdown. As a child it was worse. Non-aspies seem to focus on 'managing' the 'behaviour' and I do get why you want to do this. But the first thing the parents / carers / teachers of aspies need to accept is that meltdowns happen. They might always happen. And they happen to us even though you may feel like it is something we are 'doing' to you. That is not the case. It is something awful, frightening and horrible that is happening to us and we cant always stop it no matter how hard we try. In a similar way (I imagine) that a person with epilepsy can't stop themselves from having a fit and I guess if I had epilepsy I would live in fear of having fits. But I have aspergers and I live in fear of meltdowns. I am often faced with parents who are trying to understand the meltdowns that their child has. If you are one of those parents / carers / teachers then here's what I want you to think about... Meltdowns are like nightmares that happen in the day time. If you were faced with a child who is having a nightmare, you would not storm into their room and yell at them or tell them off or suggest that they are behaving badly. You would not withdraw affection until they apologise. You would help them and comfort them would you not? So this is what we need you to do for us. And yes, I understand that its scary for you too. Because you can't control it. We can't either. (And Im not saying that its pointless to look for preventative solutions or moderating strategies.) Most of us (even 6 year olds) will describe a meltdown in the same way, eg 'information overload', 'brain freeze', 'brain crash', 'too much coming in' or words to that effect. So even though the stimulus or the triggers may be different the end result is the same. Like cars, Asperger's comes in many makes, models and colours ... but no matter what make, model or colour the car is ... it can still crash. And you might not be able to stop the car from crashing but you can take steps to minimise the impact. If you have an Aspie in your life try talking to them about their meltdowns. Assume that a meltdown is going to happen. Make it ok to talk about. Make a plan before hand about how you can help them. Talk it over with them. Even kids as young as 5 or 6 will talk about this as long as you make it safe for them to do so. Often what we need from you is the opposite to what we are saying. We might be telling you to leave us alone. We might be crying and swearing or even smacking ourselves. We might be defensive of our personal space. But if we have a management plan it can really help. My management plan is pretty simple but quite specific. If I am having a meltdown, my partner knows that I don't want to be left alone even if I am screaming 'leave me alone'. The next step is that I need quite a firm and restraining hug. I will sometimes resist this. Then my partner will say 'everything is going to be ok'. Of course I may respond that 'its not ok' or words to that effect. But generally this procedure stops the meldown. What works for me wont work for everyone but Im happy to answer questions if anyone does actually read this.

Letting Go

So my dog died tonight. He was 17. I know thats old for a golden retriever. Really old. He outlived (by at least five years) all the puppies from four litters (he was from the first litter of 13) and both his parents. I know that lots of people think their dog is great. There are lots of great dogs. My dog, however, really was the best dog in the world. He had his own pet chicken. He was a love dog. Lots of people loved him. And he loved everyone equally. He made me seem a much better person than I am. He was my emotional connection to the world. The last couple of years were harder for him. His arthritis was getting hard to manage but he kept pretending to be ok because he knew I think, how hard it was going to be for me to let go. Then on friday night he left food in his bowl. For the first time in 17 years, he left food in his bowl. I knew that was the end really. I saw the left over food and burst into tears. We took him to the vet but the vet said 'he's fine and in great shape'. I knew though. Isn't it funny how animals can speak without speaking? I wish I understood people as well as I understand animals. That half a meal was his last meal. He didn't eat again. We took him back to the vet today to see his proper vet (not just the weekend one) and they still couldn't find a reason except his age. No cancer, no organ failure, no disease. Just age. By 5 o'clock he could no longer stand. And he was in pain. I could see it by the way he looked at me. Pleading. Trusting me to make it stop. So we did. We laid on the floor at the vets while the best dog the world has ever seen quietly went to sleep. Rest in peace old man. You rocked.

Like riding a bike...

Before I was 'the bug lady', my special interest was singing and theatre. Well it is probably more truthful to say that my special interests were split between nature and arts. These days I focus mostly on natural world interests. Recently however I have been getting back into singing. Which is good because I can. Sing that is. A lovely teddy bear I know named eric has very patiently and calmly and kindly been encouraging me to sing. So we have been getting together once or twice a week and singing. He makes it easy because he is my people. You know, the kind of person who has books of bus tickets organised into to cool patterns. The kind of person who sees the value in small things. The kind of person who sees in song and thinks in pictures. Anyway on sunday we performed in public. I couldn't speak to anyone before we performed but strangely I could get up and sing. And people really liked what we did. Its a long time since I have been so aware of my own happiness. Note to self. You like to sing. Do it then.

What feelings look like

I have never had a great handle on feelings. It is very difficult to articulate and I may have mentioned this earlier but I find emotions very confusing. Extreme emotions just feel like extreme emotions - I seem not to be able to separate them. And this means I am open to suggestion when it comes to these emotions. For example if I had a partner who said 'i love you' all the time. I would think 'ok, this is what love is'. My concept of love would be based on their words (the way they have labelled it) not on their behaviour. They could be quite mean or behave quite inappropriately and I would not read these situations as something other than love because they are saying 'I love you'.

I see this same confusion in kids and older people on the spectrum all the time. Just as I wouldn't necessarily know when I am being made fun of or when I am not, young children on the spectrum don't always understand these same concepts. Especially those that involve reciprocal social arrangements. When you combine this confusion with our innate capacity to tell the truth and live in the moment we can be quite hurtful to and hurt by those around us.

Once I had a mother ask me if I had any ideas how she could teach her son about love. "He says awful things to me... Like don't worry Mummy I won't let you get old I will throw you over a cliff and make you die first... or he tells me he hates me and wishes I wasn't his mother just because I want him to clean up his room, or because I won't buy him something he wants."

The advice I gave this mother is probably the only thing that has really ever worked for me. I told her to give up trying to teach him what love feels like because those feelings may never really make sense. Instead, try to teach him what love looks like and what it doesn't look like. For example love feels like a lot of different things, maybe to everyone, not just us aspies. However it doesn't look like someone hitting you and it doesn't look like you hitting someone. Likewise you can also learn about what feelings sound like. Love doesn't sound like shouting.

Now I guess some people would say that it is not that simple but you have to make it that simple for my people. We like rules and we like pictures. At least I do. Something I have learn't more recently (thanks to Jo Zeitz!) is how to take this idea of what feelings look like even further by drawing pictures. For example, when my people are dealing with an emotional situation that is overwhelming we do not always recognise the emotions at the time and we often find it difficult to articulate the emotions later. You can help us to work through difficult situations by literally drawing the situation thus allowing us to recognise these situations by how they look rather than how they feel. I think these drawings are often called social stories but they make more sense to me if I label them 'what feelings look like'.

I will use another example of a mother who asked some advice about how to help her son recognise when he is being teased and when he needs to remove himself from the situation. I told her to teach him what the feelings look like. At first she was confused... Then I led her to the white board and started drawing pictures... 'Here's max, what's he doing? he's crying. Why is crying? He's all by himself. Where are his best friend David (or) what happened before Max started crying by himself? His friend is over here. What is his friend doing? Laughing at Max. Where are max's other friends? They are with David, laughing at Max. So when it looks like this (ie max by himself crying while a group of so called friends are laughing / teasing him) what can Max do? Max can go to the library and read a book. (or whatever). If you draw this story out as you or max is telling it it will help max recognise this situation next time. If the aspie you are working with is very literal then you made need to draw provide a number of options (ie max could be crying, frowning, banging his head etc, David could be laughing, taunting, taking max's toy etc, Max could go to the library, play a computer game, pat the dog.) You will need to adjust the story for the situation.

That's all for now. I will write more about this stuff at some stage.

Untitled poem, a few years old

I wrote this poem a few years ago. I can't remember why or for whom I wrote it. My mum found it and without asking me she gave it to her friends to use as their wedding vows (luckily I am very fond of the friends in question!) Anyway I think I will, some years on, now dedicate it to my little niece who I have yet to meet. She had a bit of a rough entry into the world and since I have an awful flu I have yet to see her and she is already more than a week old. So this poem is for her.

May your truth be told
Your memories gold
May your path be guided by love

May you speak without fear
Your conscience remain clear
May you always believe in yourself

May your garden flourish
Your spirit be nourished
May you find your soul's true mate

May your journey enlighten you
Your friendships remain true
May your return always be safe

May nights darkness shroud you
From the ghosts that crowd you
May you not regret the past

May you cry when you need to
Let your passion feed you
May the stars make true your dreams

May the tides heartbeat still you
And peace dwell within you
May the sun not set too soon

May still waters calm you
And love disarm you
May you see the whole of the moon

Empty Head

Today my head is empty. Or too full. Perhaps that is the trick my mind plays on me. I wish I was one of those aspies who's response to anxiety is not to speak. I am the opposite. When my brain is full my words just spill out. Like a flood. I have noticed that about many girls on the spectrum. You can't get a word out of the boys but you can't shut the girls up. Not all of us. And not all the time. But when we get on a roll we don't seem to know when to stop. I think that is why I like to write. When I write I can edit myself much more effectively than when I speak. I've noticed also that words seem to be more important to most of us girls than to most of the boys I know.

Little Person

A little person is on its way into my world. No I'm not about to give birth. My brother and his partner are having their first child as I type this. It feels a little surreal. I have always known that I would never produce a child and it was looking like my brother wasn't going to produce one either ... then suddenly ... something shifted and a baby has found its way into my world. Is it possible to love someone you haven't even met yet? Yes of course. It is rare for me to feel an emotion and be absolutely certain that the label I am using to describe it is the correct label. But I know that I am feeling overwhelmed by love and excitement and anticipation. It feels good to be so sure. Emotions are very very confusing. I can't always tell the difference between extreme emotions. For example love and hate and rage and jealousy and ecstasy can all feel a bit the same in some ways... they are all just extreme emotions (it is sometimes easier to say I hate you rather than I love you, even if I don't hate you and I do love you... but if I have ever loved you then you would know this already). Its not like that with me and children. I never feel confused about them. They never seem to feel confused about me. I am always the most popular person in a room full of kids. I think thats why Im so excited about this baby. I know without a doubt that we will have a special bond and I will no longer be the baby of the family. This baby will (at least for a while) be less capable than me. It will cry more and make more mistakes (at least for a while). 40 years is a long time to wait for that! This baby will make me seem like a grown up ...  until it grows up and sees that I never did ... but that's a long way off ... so bring on the baby!

Collections

I seem to collect things wether I want to or not. Some of my collections make sense to me and to other people. Some of my collections make sense to me, but not to other people. Some of my collections don't really make sense, even to me! For example, I collect books. I have always collected books. Most people seem to think that this is perfectly reasonable. I like to own my books rather than borrow them from the library.

I have always collected artefacts from nature like interesting rocks, feathers and sticks, shells and crystals etc. Some people don't think this collection makes much sense (what's so special about a stick?). I have a dead tree in my front yard that I have had for nearly 15 years and have moved from house to house with me. At least they live outside now.  Unlike the chicken!                                                                                      



left: an old tree I have
carted around for 15 years or so.





below: a piece of wood and some rusty stuff (another collection) that came from my friends station north east of Broken Hill.

Strangely I have always had a fascination with self adhesive products. This began as a sticker collection but is so much more than that now! This collection made more sense when I was a kid because lots of kids collected stickers and my dad was a printer so he got some pretty amazing stickers from coke ads and the sides of buses etc. It probably makes less sense now that I am 'a grown up'. Even Im not sure why the self adhesive stuff matters to me but it does. The 'magic' element of things that stick together is something I find quite satisfying. I have always collected art and craft supplies and in some ways the self adhesive collection could be seen as a sub set of the art and craft collection. Most of my collections have collections within them.

   

The most important collection in my life right now is my collection of invertebrates... because I have to maintain them daily and because I like them and as far as I can tell they like me.

Some of my collections appear to be highly organised and some of them appear to be highly disorganised. It think it is somewhat unfortunate that my order is in chaos - as long as I can see it and I am the one who created it, I tend to know where things are. It is highly disturbing to me when someone else messes with my order. Many a meltdown has occurred in my life when someone has imposed a last minute or unwanted change to my order. This can happen in several ways. It can be a physical change like someone coming in and moving my stuff (awful scenarios spring to mind of my Mum coming in and cleaning up my room when I was still living at home). Things not being where I think they should be is terrifying.


Timetable changes or changes in my schedule can also be quite difficult to adjust to. Last semester at Uni, my time table was changed unexpectedly and adjusting to this pretty much caused a major breakdown in my ability to function. I wasn't able to complete the semester.

Two things have occurred to me in terms of my relationship with the things I collect and the order they are in. The first thing is this... (I won't go into the reasons here but I will try to write about it later)... Im not sure that I fully understand that inanimate objects don't have feelings. I find it very hard to throw things out in case I cause affront to that thing. This is especially true of things that belonged to other people or things that were given to me by other people. This is not the entire reason behind my collection but it is definitely a part of the reason I find it soooo hard to let go of stuff. I have strange attachments to things. It is as though they are physical markers along my emotional path.

The second thing is that I do seem to have an attachment to spatial distribution - I have a picture in my head of where things are. If I want to find something I examine the picture in my head of where I last had / saw that thing and it is easy then to find it. If I have moved the thing in question then the picture in my head will adjust accordingly. If YOU move that thing without me seeing you do it then my picture has not been adjusted. When I walk into a room where someone else has moved things without me being there to see them do it, sometimes this can have the effect that very suddenly and frighteningly NOTHING makes sense anymore. It doesn't just become a picture with a hole in it where the thing that has moved is missing (although sometimes it does). It becomes a picture that has been scrambled.

In order to make the picture make sense to you, you have ruined the picture for me.



This is hard to explain because I am aware that not everyone experiences their world in this way. I don't understand how other people create their order so I don't understand what it is like not to rely so heavily on visual/spatial distribution. This might not make any sense to some people but it may help teachers, parents, friends understand the importance of order to my people. It may explain why the aspie in your life has a meltdown when you touch their stuff or clean up their room. One thing I have found that helps a bit is this... If you really want to help an aspie clean up a room, and you know they struggle to make choices themselves about where things go etc. Then let them sit on a chair or on a bed while you talk them through where you are putting things. "Im putting these socks in this drawer". Better still label the drawer "socks". I will talk more about this later but I have to go now.

Special Interests

Some / Most or All of what I have to say in this blog could be true for some, most or all people. I don't know because according the those who are in a position to apply labels to others, I am an Aspie. Therefore I don't know if what is true for me is true for people without aspergers too. There are many many myths about people with Asperger's (like that we are all shy and anti social or that all children with asperger's behave badly or inappropriately more often than children who do not have Asperger's, that we are all like rainman) however the idea that Aspies tend to have one special interest on which they focus is probably true for most of us, although it may not seem that way to others. My special interest is and has always been 'how things fit in the natural world', which some people would say means that I am especially interested in everything! Except Im not. Im really not interested in money. No matter how hard I try, the accumulation of wealth doesn't really make sense to me. I wish it did but I cannot make it so. Likewise I am not particularly interested in traditional mathematics although there are certain numbers that I find fascinating (like Fibonacci's sequence and the numbers 11, 88 and 42 (the answer to everything)). Throughout my life I have had passing interests in other things too. As a teenager I had a passing interest in 'making friends' and 'fitting in' (Wow, what a lot of effort that was!), I also had more than a passing interest in drama and singing but I think this was part of my lifelong interest in words, language and speech. I have always been interested in and drawn to 'my people', as in, other people with autism spectrum disorder so it did not come as a surprise when that label was applied to me. I also have a fascination with truth and with time and with patterns in truth and time. There have been some 'themes' that have dominated my special interest in how things fit in the natural world. Right now the dominant theme in my special interest is "invertebrates", past themes include 'birds', 'mangroves', 'intertidal ecology' and 'coastal processes' to name a few.
Given that today is the first day of this blog I will try not to overwhelm you (or me) with too many ideas about special interests but I will say this. If you are a parent, teacher or friend of someone living with ASD (autism spectrum disorder) my personal opinion is that you should use the special interest for positive reinforcement rather than negative. For example 'when you do this particular thing my way you can have or do this other thing related to your special interest'. Negative reinforcement (ie if you don't do what I want then I am going to take your special interest away) may result in the required behavioural outcome but it will come at an enormous cost to the person living with ASD. Again, I can only speak for myself when I say that I was never very forgiving. I have always had a very strong sense of social justice, so positive reinforcement seemed fair to me. The use of negative reinforcement seemed particularly cruel and unfair to me and could destroy my trust in a person forever. If used in the correct way, teachers, parents and friends can use an aspies special interest as a vehicle for all kinds of learning and behaviour modification. Here's an interesting picture of one of my giant burrowing cockroaches shedding it's exoskeleton. Enjoy!

Repeating patterns

Nothing interests or attracts me quite as much as repeating patterns. Patterns in nature (which is everything), patterns in people, patterns in numbers, patterns in words, patterns in music, patterns in travel / transport, patterns in food or my relationship to it, patterns in me. Sometimes this is a good thing, sometimes its not. Patterns are addictive and I don't always quantify them in a healthy way. I can become addicted to an emotional pattern that is not necessarily good for me, but is none the less interesting. This attachment to pattern is something I see in many of my people and something that challenges parents, friends and teachers... Especially if they are looking for a solution to a difficult (for them) behaviour without understanding that it may stem from an attachment to pattern.

Welcome to my world

Ok so I've started this blog in response to the large number of parents, teachers and friends of people with Asperger's who want to learn more about the way I experience my Aspie world. I make absolutely no assertions that my ideas will be useful or interesting. In fact I'm sure that some of the things I have to say are probably quite controversial. All I can tell you is that the stuff I write here is my truth at the time. Not necessarily the ultimate truth, and not necessarily the truth beyond the moment it is written. That is all I will say about the truth for now as it is far too interesting to get into at this point. Feel free to post questions but please understand that i can only address them from my own experience and point of view. Obviously I can not and do not speak for all my people and what is true for me will not be true for every Aspie out there.