A war in my guts

For as long as I can remember being self aware enough to feel alienated from other people I have also been aware that my guts are at war with something. My body has never 'done the right thing' with food and it has been obvious to me forever that I process food differently from what the books say. The steps taken by others to lose weight do not result in me losing weight. The older I get the more regular and intense my gastrointestinal discomfort becomes. I am able to get some relief by avoiding gluten and lactose (changing to A2 milk made a huge difference) but I am convinced that this is just a coincidence and that it is something else found in products high in gluten and lactose that is at the source of my bizarre gut war. I have noticed that this is common in people with AS. I even wonder if it is a big part of it? Imagine how thrilled I was to watch the ABC program the other night highlighting the potential link between proprionic acid formation in the gut of people with AS. This program rang so many bells with me that I am certain there is something in it. Im willing to bet that this will be the biggest AS breakthrough in a long time, if not ever. I have immediately begun looking into managing the levels of Proprionic acid in my body and will report back with the results.

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.