Sunday, 27 March 2011

Undiagnosed Aspergirls part 2

So... after posting about the various women I have met in the last while who were obviously on the spectrum and not diagnosed, I realised that there was one thing in common with each of these encounters.

These women had an intensity about them, which I found completely seductive. Mainly because it's something I instantly recognise in myself. I spent years of my life in search of intense experiences - not such a good idea, you can imagine where that led me. They were in search of one-to-one conversations with somebody who was interested in what they had to say. They tended to monologue, were bad at listening, and in one case, had rampant echolalia!

But when I say the encounters had something in common,  it was my reaction. In all these cases, I immediately knew these women as I know myself. My former self. I recognised the desire to conform socially, particularly in a work environment.  The anxiety that comes with knowing that you are not quite meeting the grade socially, and you can't seem to fix it. The desperate need to make that connection with somebody else, and explain all about your special interest, and why it's so important and, well, interesting.

In my earlier post, I talked about seeing things going wrong, and wanting to help, but not being able to. But in terms of my own personal response to them, in the end, I backed away. I found their intensity slightly scary, because it was so familiar, and their anxiety set off my own anxious response.

Maybe part of the problem was that I didn't want to be reminded of who I used to be, before I finally gained some meaningful self-awareness, a way of explaining me to myself that made sense to my core. It was like seeing myself through others' eyes, in all my ignorance of what was driving me.

Maybe there are some things we should never see.

Saturday, 26 March 2011

Aspie mum of aspie kids - does it make it easier?

So... just to say up front, I'm not competing for who's got it worst or easiest! That seems to be kind of pointless. But today was the first time that it occurred to me that it might actually be an advantage to have Aspergers if you have kids who are aspies too.

I know every mum gets that feeling sometimes that only they truly understand their child, and nobody else will really 'get' them in the same way. It's why mothers in law have such a bad reputation! I was just thinking today about the ways in which I empathise with Lucas and Pippi. My daughter is 6, but she has significant language delays, and since she started school it's been really hard to know what's going on there, and how she is dealing with it. She doesn't have anything like the language to tell us anything about what happens during the day. We might hear a sentence about one or other child, rarely the same one twice.

She's started wetting the bed lately, despite being dry for the last 3 years, and she's been getting really upset over small things, and then telling us tantalisingly incoherent stories about things that have upset her in school. I feel for her, it's so hard to see her suffering and not to know exactly what's affecting her.

I remember my own experiences of primary school. I'm sure that I was happy a lot of the time, but I remember clearly being different from the other kids, and not understanding what it was about me that was causing problems. Even at that age, the other girls had comparatively sophisticated social understanding that I was completely lacking. I spent most of the time back then either reading, thinking about my favourite books, or imagining myself in my favourite books. I did the academic work in double quick time, with the aim of being allowed to read for the rest of the lesson. I was very quiet, and nervous of the other kids.

But Pippi isn't like that. When I see her around her school friends, she is boisterous, and full of life, jumping around, talking nonsense. She seems to fit in just fine, but then I hear one of them calling her a 'baby', and I know that they have noticed that she doesn't talk like they do, or understand the complexities of their game playing. I suspect that she is starting to feel different from them.

But does my own experience make it easier? Can I find a way to use it to help her? I suppose the answer right now is, I don't know. I think that the emotional side of things is key. I want her to grow up to be a well-adjusted, happy aspie, with a grounded knowledge of what she is capable of, given the right support.  Realistically, all I can do at the moment, is to keep the school posted about things at home, keep those lines of communication open. And prioritise Pippi's emotional wellbeing, make her feel safe, listen to her when she's upset, convey to her that her feelings are important, and she is valued, loved and understood.

Extra cuddles. That I can do.

Thursday, 24 March 2011

Therapy works?

So... some people say that talking therapies are not appropriate for people with autism, and can in fact make their 'symptoms' much worse. Experts recommend Cognitive Behavioural Therapy, which is structured counselling, which focuses on desired outcomes, and strategies for attaining these.

Handling my emotions has always been difficult, I spent quite a few years in therapy, before realising I had Asperger's Syndrome. I started out with Jungian therapy (think Woody Allen!) which was a lot of me talking, and a lot of questions from my therapist. This was useful in coming to understand some of my feelings around being adopted (more about this on a later blog). I can't remember what my therapist looked like, as I never looked at her while I was talking. The stuff we were dealing with was too painful.

I stopped this therapy after 2 years of going every week (and crying for an hour afterwards), and at the end of this period, I at least was able to name all the emotions I was carrying around. Prior to therapy, I was emotionally illiterate, and never understood what I was feeling, or how I was projecting it outwards.

I ended up back in therapy as soon as I became pregnant for the first time. Even though this was planned, and I was 35, I thought I was going crazy. The hormones along with quite a lot of unresolved stuff around my mothers (natural and adoptive) and my own fear of being a bad mother, sent me quite doolally for a while. This time I went for more structured counselling, I wasn't able for the delving into deep-seated and ancient feelings of loss while I was pregnant. Counselling was very helpful, and I was able to put some stuff in the places it belonged, and leave it there permanently.

My son is currently partaking of Cognitive Behavioural Therapy, and it is really helping him to manage his anxiety, but then he has had me to help him with identifying and accepting his difficult emotions since he was tiny, this has been an important role for me since always.

When I finished my last counselling session I felt like a bit of a fraud, because there was something about me that I wasn't managing to communicate, that I was too afraid to voice. Stuff about how I related to people, even my own family. Stuff about my constantly changing obsessive interests, and how everybody in my life took a back seat to them. Stuff about just being generally weird and having to DIAL IT DOWN around other people all the time. I was too ashamed to bring any of that stuff up, and I didn't have the words for it, or any way to communicate any of this as a total experience.

I didn't have the word Asperger's.  What a great word.

Undiagnosed aspergirls

So... I do sometimes wonder about some of the people around me, who display some autistic tendencies. I know that there must be significant numbers of undiagnosed autistic women my age walking around, who have no idea why they have difficulties sometimes getting on with their peers, or why they get in trouble for being too outspoken at work.

I can think of two women I've met in the last 6 months who I've seen getting themselves in trouble. Both of them don't seem able to stop themselves from saying things they really shouldn't have said, when they thought they were being humorous.

It raises a lot of sympathetic feelings to see somebody doing that, because I know the slightly lost feeling when you let yourself go, thinking that you're belonging in a group, then suddenly it all goes wrong, and you know you did something wrong, but you don't know what or why you did it. Worse still is when you go on your merry way, thinking everything is hunky-dory and as soon as you've gone, everything falls apart, and you only hear about it hours or days later, when it's too late to fix it, or explain anything, and you're the baddy.

I see that lost, hurt, uncomprehending look on their faces, and I want to help. I remember some of the things that people have said to me and about me over the years,

"You do know you come across as quite aggressive?" (age 19)
"She's over there crying her eyes out, while you're over here partying." (age 30)
"You're very masculine aren't you." (age 42)
"so now you're writing a novel! I never know what you're going to come up with next." (age 43)

These are all branded on my soul, along with many others similar. Not knowing why things were going so badly wrong was so much worse than knowing. I wish I could fix it for those women, or at least explain to them that they're not alone. If this blog reaches one such woman and helps her to understand herself a little better, that will be more than enough reason to write it!

With thanks to Rudy Simone, for having the courage to write such an amazing book, that tells it how it really is, and helps Aspergirls to reflect on their lives.

Tuesday, 22 March 2011

Married but different

So.... counselling session today, Lucas didn't attend today, usually it's the two of us together, but today it was me and dh.

I think a few comments I passed may just have given the impression that dh and I aren't singing from the same hymnsheet when it comes to how we deal with the Aspieness. I'm all for proactive approaches to help Lucas with his anxiety, Cognitive Behavioural Therapy, followed up with interventions at home to help him feel safe about trying new things, and rules for us to follow around stuff that makes him feel unsafe, like having our friends and their kids round to our house. So if people are coming over, we give him 2 days notice, we help him hide his favourite toys, and we check in with him every so often to check he's OK.

DH loves both our kids and would go to hell and back for them. He thinks they are both tiny geniuses. But he won't open a book about Asperger's syndrome, or read an article on the interweb, and he thinks that counselling is the biggest waste of time ever.

The counsellor asked me to bring DH in, so we could discuss the approaches we are using, and put up a united front. He tried! He gave up in the end, and the best that he could do was to get us to agree that I'm into proactive approaches (as above), and DH doesn't object to this. There was no anger, I have stopped nagging him to be more informed about Asperger's, seeing as he is in the minority in this family! I have given  up on him ever really understanding when I talk about this stuff. That's one of the reasons for this blog, the chance to share with people who get it!

One of the biggest payoffs from our counselling sessions has been that it has freed me up from the angst that I feel when Lucas is overwhelmed with anxiety and shuts down. Now that I know what approach I'm using, I can leave him alone to recover when things get too much, and then later on, talk to him about what triggered the anxiety, and how he managed to get over it, and what we can do to fix whatever is bothering him. Sometimes it's fine just to recognise that he's a bit tired and grumpy that day, and agree that we can't be always happy. Before, it used to upset me so much to see him so much, but now I can see it as just a temporary reaction to a particular situation, that will pass, and that we will learn from and move on.

I'm being much more strategic about trips out of the house, I seem to have internalised the new approach, and I'm automatically consulting with him a few days beforehand, negotiating any difficult areas before they occur, where possible, and coming up with a contingency plan for unforeseeable circumstances. This seems to be allowing Lucas to feel safer about going places, he knows that we won't let his anxiety overwhelm him, that we will listen if he's not happy for some reason, and do what we can to fix it.

Maybe this is the beginning of a brave new Lucas, who will be willing to do more things like going to live concerts! He's signed up for cross-country running after school - his first ever extra-curricular activity, something I never thought I'd see.

He even ate bread yesterday, first time in 3 years. Progress is progress!

Monday, 21 March 2011

Bieber couldn't be better (lol)

So... dragged by Lucas, my aspie son, to see Justin Bieber in Manchester last night, not really my choice of a night out, but I've found that encouraging any kind of special interest can have unexpected payoffs.

Lucas was popping some bieber-style moves, singing along at the top of his voice, and totally having the time of his life! Since this interest in Bieber started, he has shown an interest in the guitars we have always had around the place, and has even picked up the half-size one, and started trying out different ways to get a sound out of it. I think he is finally going to take up dh's offer of teaching him guitar. He's also secured a promise of a set of drums on his birthday!

I know there's a lot of music snobbery around, and a lot of people would look down on Bieber and other teen pop types, (including dh) but we were both so thrilled that Lucas was taking a serious interest in his own choice of music, up until now, he's mostly listened to music that we have put on his iPod, upbeat stuff selected from our own back catalogue mainly, some Beatles/Kinks tracks, ABBA, Simply Red, all kinds of random stuff. But this is the first time he's chosen something for himself, he requested the album for Christmas. I'm so thrilled that he's starting to appreciate music that speaks to him, and belongs to his generation. At his age, I didn't even know that pop music existed, as my parents only listened to classical music on occasion, and didn't approve of any kind of modern music.

I took some precautions, brought ear plugs, which he tried but didn't like, got there quite early to avoid any pre-gig stress, held hands the whole time we were wandering around so we didn't get separated, the crowds weren't too bad, there were always gaps, he went a bit quiet when we were waiting at the entrance, but I kept checking he was OK. We got a huge tub of popcorn which got him through the wait for the support acts to come on, and I explained all the things that were happening, the order the acts were going to come on, where the musicians would be on the stage, and what would happen at the end of Justin's set, the rules about encores! I think all that helped, and I noticed that while we were dancing, he was looking around to see exactly what other people were doing, so he could wave his arms in time with everybody else, and make all the right hand shapes (lol).

It was such a meaningful night for me to be able to bond with him over his first music crush, and take him to his first proper gig! We had lovely cuddles, he wrapped my arm round his head when the screaming got too loud for him, and we held hands and danced together most of the night (we were quite high up, I think he was afraid of falling down). Maybe it sounds too cutesy, but for a 9-year old boy to be so affectionate in public is pretty rare these days! Some of the girls around us thought he was really cute, with his baseball cap and bieber haircut!!

I love him so much, and I was so proud of him yesterday for trying something new and really scary for an Aspie, and doing it with flair!

Thursday, 17 March 2011

Brain Filters

So... today I'm thinking about the stuff I really shouldn't say, but somehow by the time I realise it's a mistake, it's already left my mouth.

Does this ring any bells? The times that I have tend to screw up are in two main categories (what an aspie, categorising my social errors!!) First is when I'm very tired, or stressed, and my brain isn't working fast enough to stop me from saying stuff I should keep to myself.

Second is when I'm relaxed and enjoying myself, and I forget that I can't just say something funny and clever on the spur of the moment, because I end up hurting people's feelings.

Sometimes I do get away with it, and I do have a reputation for having a very dry sense of humour among those who know me well. Those who don't know me well often don't realise I'm joking.

The one time I never screw up verbally is with my kids, I know I can't use adult humour on them, even if my oldest is a sarcasm convert, they can't take it.

Don't dish it out if you can't take it...

So... I had a kind of appraisal meeting today, with my mentor. It mostly went well, she had a couple of comments on things I could improve, nothing major or unexpected. But...

She uses sarcasm a lot, which I struggled with initially, as it took me a while to figure out when she was joking. I had quite a few very embarrassed moments, as she pointed out my failings (this is my first placement). She does it in front of patients, putting down my skills in a jokey way, and sort of encouraging me to join in. I think it's a way for her to have a quick humourous bonding moment with some of the patients. I've educated myself on how and when she does it, so that I'm not taken by surprise, and have mostly just laughed, occasionally I have joined in a bit, mock-defending myself. That's all been fine. She has gained a reputation among former students as very hard work, and a bit of a b****. I imagine they didn't know how to take her sarcastic comments, and found them hurtful. I've tried very hard not to go down that road, and my focus has been on understanding her better. 

But, I made a jokey comment to her the other day in the office about her teaching style, in the spirit of the banter that she has encouraged, and although at the time, she took it as a joke, it was obvious today that she has taken it to heart, and spent quite a bit of time in my appraisal, defending herself from a joke that I never meant her to take seriously. She didn't actually say why she was explaining her learning style in depth, but it was fairly obvious. I didn't mention my original joke, as I didn't want to make things worse. 

Clearly she is quite sensitive, and this has played on her mind, and maybe the sarcasm is a defence mechanism for her. But has it not occurred to her that she is a healthcare professional with 20 years experience, and maybe all her little new students are less able to cope with her sarcasm than she with theirs? She is in a position of power over us after all. 

As an aspie, sarcasm is so difficult. I can join in with sarcastic banter a little, but I do get it wrong sometimes, and on occasion, I get too close to the bone, and this is obviously a case in point. I suppose the lesson is the same one I keep trying to internalise, SHUT UP! Not all the time, but don't do the banter thing. 

Wednesday, 16 March 2011

Aspie - In the Closet

So... in college today, everybody waiting to get their first set of results, major stress all over. I was trying not to get stressed, but when surrounded by all that anxiety - difficult not to join in.

Yesterday I had a very typical, for me, aspergian lapse of manners, there were two of us supposed to have a tutorial straight after work with our personal tutor, she arrived late, and asked if we had figured out who was going first. There was a pause, and my friend looked at me, I immediately jumped in and said "I'll go first, you can go first next time." Completely forgot that her husband works night shifts, and she had to leave early. Went straight into the tutorial, and came out to find her, coat on, face all red, obviously upset. That was the point at which I realised I had screwed up. Apologised in person briefly, and by text later on, twice, and I think that we're OK.

I hate it when I get stuff like that wrong. That's when the word Disability starts looming in my mind. I feel quite helpless. Don't get me wrong, the vast majority of the time, I pass as Normal/Neurotypical, although people think I'm eccentric, they see me as clever, and articulate. I got voted in as class rep on my Nursing course, not my idea at all.  I have been consciously trying to keep a low profile, as I am suddenly aware that doing this course could seriously expose my social deficits. I try not to talk too much in classes, not to answer all the questions I know the answer to, just a proportionate number, like everybody else. I consciously ask other people how they are coping with the stress, and I have banned myself from indulging in special interest monologues. (I don't always manage it, but I have cut down a Lot.)

I've been reading the posts on Social Rules on Wrong Planet, and it's really interesting and helpful. I can see from the posts that lots of us aspies are social anthropologists, learning social rules through observation and bitter experience of getting it wrong. And some people are asking 'should we be doing this?' Should we be trying to pass as N/T? Shouldn't we be proud of being Aspie?

I only have my own answer to that, which is a huge fudge. I am proud to be Aspie at home, and I am totally proud of my Aspie kids, and very public about their status. But when it comes to my new career, I am afraid that if I 'come out', I will be subject to prejudices around my ability to be empathetic, or read body language. In fact, I have had years of experience of watching body language very closely, until my conscious readings are usually as accurate as those of an intuitive N/T. While I don't see any issue in becoming a nurse, I suspect that there may be many people in the NHS who would be very quick to say that my disability disqualifies me from working in that role.

What do other people think about this? Should aspies be working in 'caring' professions? Should we be 'in the closet' at work?

Saturday, 12 March 2011


I've been reading quite a bit of stuff about self-diagnosis, and criticism of people who have identified themselves as self-diagnosed with Aspergers. I think I'm giving myself a free pass on this one, as both my kids are officially diagnosed, and I'm very similar in so many ways to them. I think that part of the problem is that there are many people are out there who don't really know that much about autism, but because they've been hearing about it in the media for years, they believe themselves to be well-informed.

And of course the internet allows people to say anything at all to anybody at all. But social conventions are there for a reason. Take the brakes off, and you're going to have a crash. Some of the people who are spending a lot of time posting on the internet are not people I would want to talk to about these issues in real life. For me, getting on the internet is about sharing my experiences with people who understand me, and possibly clarifying some things for people who are interested, as well as getting more information on how to help myself and how to help my kids, without getting overwhelmed and trying to do it all at once!

Self-diagnosis is not a big deal. Diagnosis wasn't available when I was a kid, and really wouldn't add anything to my life right now. I already have coping strategies well-established, and I'm now consciously reviewing those. Official diagnosis for me wouldn't really add anything to my life or my understanding of who I am. That happened after my kids were diagnosed, as I gradually began to recognise my and their autistic traits more or less simultaneously. It was very freeing, and I am so much happier now than I ever have been. Being able to understand what's going on in my head, and why I react to certain situations the way I do, has been truly a revelation, and has empowered me.

Thursday, 10 March 2011

Parents' evening

 So we went along to parent's evening on Monday, and our aspie son is doing fine really, the handwriting is holding him back, but hopefully that will come in time, he's only 8, he's still got a few years at primary school to get over that. But our aspie daughter is another matter. Her language is about 2+ years behind the other kids in her class. She gets upset sometimes for no apparent reason, and then comes out with stuff that's happened at home that's upset her. Of course, she does the opposite at home. She was the happiest kid ever until she started school, totally oblivious to being different, but since school I think she has started to feel different.

I can remember my own feelings from the same age, I had the aspie thing going on, but not the language delay. I internalised the difference as guilt, and shame. Maybe because I'm a catholic? Not any more, but back then. I can still tap into my feelings from that age of being afraid of doing or saying the wrong thing, I was always trying to cover up my inability to figure out what I was supposed to be doing in various different scenarios. I could never figure out what the rules were, they always changed, and seemed to vary depending on what group of people you were in. I copied others, but this often got me into trouble, as I didn't know which bit of mimicry to use in what situation. I needed a map, and didn't have one. I felt quite lost and I think I have been constantly anxious my whole life.

So what do I tell my daughter. She doesn't even know the difference between in front of and behind. How can I fix her sadness, when I can't even begin to explain what's happening to her? Of course I can't. I know that. Doesn't make me feel any better about it.