What a difference a diagnosis makes

As I’ve mentioned before I’m still waiting to be officially diagnosed with autism. Now it seems that that could happen very soon, at least I will be assessed very soon. Many others have written about the difficulties of getting a diagnosis as an adult, particularly as a female,  since autism can be well hidden sometimes, although this ability to pass for neurotypical in no way makes it autism-‘light’. 

I’ve been incredibly lucky in that for me it’s actually been a relatively short space of time between my first suspicions and my assessment, less than a year. It is only by chance that I happen to qualify for some local funding to be assessed privately. Others face a much longer wait. I had prepared myself for that long wait so now I’m trying to cope with the adjustment to a completely different time frame for this process.

With the assessment looming closer each day and the main purpose of this blog post is for me to try to work out how I feel about it. I often have trouble identifying emotions and so for big things (OK I also devote way too much time and energy to doing this for small things too) I need to actually set time aside to sit and process what’s going on in my head and try to sort out the jumble of feelings into something rational enough to type into an incredibly long sentence.

One feeling is very clear to me – FEAR. I am scared of being assessed. Naturally I’m worried about being in an unfamiliar environment with unfamiliar people – even though I am again luckier than most here as I know a little of where I’ll be. Mainly I’m terrified of not getting the diagnosis. Even though there’s very little doubt in my mind that I have autism, the diagnostic system is far from perfect for females still and I feel I don’t have much supporting evidence to fall back on. While there’s diagnostic tools which are pretty accurate there’s no 100% test, so a lot still comes down to the clinical experience of the assessors and I am not great at trusting professionals to be able to do their job well. This is both a reflection on both the poor quality of service I have received (from mental health practitioners) in the past and my own egotistic difficulty in believing other people know better than I do.

If I am not declared autistic, or perhaps not ‘impaired’ enough to warrant the diagnosis, I’m not sure where this leaves me. I will still have all the symptoms but I won’t have the rubber stamp which makes it official. In some ways I don’t need that rubber stamp. Already in the year since I started suspecting autism I feel I have made great progress in understanding myself, I now can’t go back to trying to judge myself by neurotypical standards. This is a good thing. Even without an official diagnosis I still identify as an aspie within the autistic community and I find the interactions I have with others there incredibly useful. There is so much to be said for simply finding others who are in similar situations and without even exchanging tips just sitting together on the ‘different’ bench. I like the people on this long bench, the ones who bravely battle illnesses physical and mental, the ones who battle every sort of bigotry and still find the energy to give so much kindness to each other. There is such richness here and I count myself lucky to be surrounded by such people.

So if I am not diagnosed I need to remember that it is a reflection on the system and not on me. Nothing changes except perhaps the support I will then be able to access. Achieving diagnosis – and rightly or wrongly it will feel an achievement – will also be a step in the direction of coming out of the autistic closet. The real life people I have confided in so far have had mixed reactions. Too many simply see me as too functional (little do they know!) to be autistic. Too often I have urges to announce “…and the Oscar for neurotypical human goes to… *drumroll* …me!”

As well as fear I feel some excitement – sometimes I have trouble telling excitement from anxiety as they both make my heart beat faster. I am excited at the idea of being vindicated in what I have come to believe. I am excited that finally I will have evidence for why I am the way I am. I am excited to have a diagnostic defence (not an excuse) to use against all those – myself included – who accuse me of being selfish or spoiled or lazy or crazy. I think this will help my mental health, I will be more able to tell myself that it’s OK to be the way I am. I could even go so far as to call the people who are not OK with that ableist. But before I can make such accusations I need to overcome my own ableism. I need to stop judging myself so harshly and telling myself that it’s stupid that I cannot do something today that I managed easily last week. I know this will take time.

Diagnosis also raises another emotion I can see clearly and that’s resentment. I am angry and hurt that all those child psychologists I saw, the school counsellors, all my teachers, my family, all the people who were supposed to be there to help me as I grew up not one of them was able to see that I had autism. I know that it was less well known when I was a child but I cannot help but think how different life might have been if I had had better support. How much suffering could I have avoided, how much sooner could I have started along this road of self-understanding? I am not saying the autism is to blame for every problem I have ever faced but if I had understood even a fraction of what I now know about autism then I would have been better equipped to handle each problem. Hindsight is both painful and redundant. Nothing is to be gained from thinking of what might have been but it is still hard to let go of this resentment. It does however make me passionate about early diagnosis and intervention. I cannot live with the injustice that there are kids so very like me suffering today because they’re not getting the right help.

I was telling someone a while ago about my self-diagnosis and they said “so it sounds like autism is a really positive thing for you?” They sounded quite surprised about this but they were right. Without detracting from the many difficulties that autism causes in such a neurotypical world, for me autism is brilliant thing rather than a disability. It is an amazing relief because at last I have the beginnings of answers to a lifetime of questions. The day it finally clicked that I had more than the odd autistic trait I was overwhelmed as suddenly I saw my entire life in a new light. So many things I had blamed myself or others for could now be explained in a new way – again this does not take away any responsibility for the actions of myself or others. It was dizzying how neatly everything fell into place. I have at least a hundred anecdotes which serve as evidence for my own belief that I am 100% autistic.

I am still worried about the diagnosis. I think it’s probably OK that I’m worried about it. Recently things have been bad. The Rabid Wolf of anxiety has daily been chewing me up, spitting me out and then using my last nerve as a toothpick. This has lead to me not sleeping enough and my behaviour has been very challenging. This is impacting on every area of my life. I need support to help me improve my mental health but I need that support to be in the context of autism. All those therapists and psychiatrists I’ve seen over the years when, like now, things have got too much, they were all trying to work without a key piece of information.

So now I hope that that information can be made official. I know that I will continue to manage alone if it doesn’t but I think that things will be easier if my ticket to aspieland is rubber-stamped.

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Relationship status: dormant, and why I’m OK with that

This post has been simmering away in my mind for a few weeks now. What it really comes down to I think is weighing the pros and cons of being in a relationship. I hope to explain how I can be both crying out for love and not remotely interested in looking for love right now.

I imagine the questions people would ask if I declared myself happily single. The first question is “aren’t you lonely” to which I’d answer “sure”. I’m lonely.  I’m a great soppy romantic at heart (don’t tell anyone, it’s a secret). There’s nothing I’d like more than to spend my time with someone I can trust. I’d love to do all the simple loving things people do, nothing extraordinary just things like cuddling and holding hands. Little displays of affection. I can’t remember the last time I had a hug with a grown up that was longer than 5 seconds long. I miss that stuff. What I also remember is being just as lonely while in a relationship. I remember the pressure of trying to be whoever the hell it was I was trying to be. I remember the differing opinions on parenting (one of my exs had kids who lived with us) and all the grief that caused. I remember the constant compromises and sacrifices that had to be made. So while yes I am lonely I am currently much better off in some ways. I am able to be selfish about all the silly things like what and when to eat and what to watch on tv. I am more able to be myself.

I also like being a single parent. Don’t get me wrong it’s tough as well. Some days I could cry for want of another pair of hands just to pacify P for long enough for me to have a wee. But I do love that I’m the only one who gets to make decisions about her life. While that adds some pressure as I am the only one responsible for her I’m nowhere near being ready to allow somebody else into her life as a second parent and for the next 18yrs or so that’s what any serious partner would be. I’m not sure if I’ll ever be ready to do that. I think I feel this more so because I have been that second parent coming into a kid’s life and, as resilient as kids are, I have seen the pain it’s caused when things don’t work out.

The other question I imagine people would think (if not actually ask) if they heard me declare myself happily single is “don’t you want sex?” Again the answer is “sure”. I enjoy sex. I know some people don’t, I just happen to fall into the fairly mainstream category when it comes to sexual desire. At the same time I recognise that sex isn’t the be all and end all. I see it as an additional bonus to being in a relationship not a key part of it. Sex can be all sorts of things depending on the context, it can range from an act of violence to a euphoric expression of love. In my mind sex and making love are separate entities. If I wanted sex badly enough I could easily arrange it. To make love I’d need to be in a full-on relationship with someone I trusted deeply. I think making love is an amazing way to communicate love, perhaps even the most honest expression of love. I hope that one day I’ll be ready to start taking baby steps towards a loving relationship but I’m not in any rush.

I’ll admit that a part of my reluctance to even contemplate a new relationship is just how bad my previous relationships have been. I’m not sure I should ever trust my judgement again. I’ve been obsessed with people and not been able to see their flaws even when they were staring me in the face. I’ve made some really bad choices which have led to a lot of pain. So it’s not surprising that I’m not ready to take that risk again.

Another reason is that I simply do not have the energy to really give much of myself to another person these days. I use every last joule of energy just blundering through life trying to keep my head above water. My mental health is not in a place where it would be fair to inflict the burden of caring for me on a new partner. I’m not saying mental health difficulties are a reason not to be in a relationship, I’m saying I wouldn’t want to put that responsibility on someone, I wouldn’t want to feel guilty I would want to bring them joy rather than responsibility. Entering into any type of relationship I think you take on a degree of responsibility for the other’s well-being and the more you open your heart the greater that responsibility is. You might have noticed I’ve used the word ‘trust’  a few times, there’s no way I’m anywhere near being in a position where I could trust someone to love me the way I am at the moment. I have a lot of things to work on but I live in hope that I will get there one day.

So sure, there’s there’s things in life I don’t currently have and they can be good things. I still believe in love. I still believe that one day I might meet ‘the one’ but I also know how many times I’ve felt that way and I know better than to trust myself. I’m not saying ‘never again’ but I am saying ‘not now’. Until then I have my imagination and I can indulge in fantasies (that involve a lot of cuddles!) about whoever I like whenever life affords me time to do so. This is safe and a comfort to me. So for now, as I do battle on other fronts I’m content to declare my relationship status dormant.

Lessons in kindness

So you may have noticed I’m a little obsessed with the concept of kindness these days. It’s such a simple concept, I think we all have at least some idea of what is meant by the word but it’s a big, complex, damned hard thing to actually live by. So with this in mind I’ve been noticing kindness more than ever before and learning more about what it is (and what it’s not).

I had a bad day on Thursday. Not my worst day ever, not even close but probably one of the worst ones I’ve had in the last year or so, I think at the time I’d have ranked it within my top 5 bad days in recent history. It’s so difficult to really recall how that felt when I’m doing so much better now. I know my anxiety peaked. I know it was likely the result of the cumulative ‘changes and chances of this fleeting world’ which have been building up over the last few weeks (months? years? lifetime?) At the time I described it as trying to function normally “…while on some violent fairground ride while under influence of all sorts of mind-bending substances.” Not that I’m an expert on substance use but it was a little like how I imagine such an experience to feel. I remember shaking a lot, rocking a lot, feeling my heart beating like it was jumping out of my chest like in a cartoon, fighting the urge to hyperventilate and just let it take over and knowing all the while that I couldn’t really afford to take much time out, that life went on and I had things I needed to do that day… so yeah it was a pretty bad day.

Friday however was an ok day, nothing special but I was much more functional, productive and content – I could ask for nothing more. The difference between these two days was huge and I spent quite a bit of time on the Friday trying to work out what that difference was. If I could pinpoint exactly what made the difference and learn to use it I could avoid having days like Thursday ever again. The main thing which made a difference was receiving good support and having the guts to admit that I needed that help. I also saw this on my twitter feed (shared by @FREEYOURMINDCIC) :

B7gFSsIIQAEDB5i

This made gave me some answers. The support worked because it was unassuming and centred in kindness. Each of the things on this list is an example of kindness. I also particularly like the last line – every day is different. Realising this helped me let go of trying to analyse exactly why I was ok enough to pass for ‘normal’ on Friday but the simplest task had me in hysterics on Thursday when not much had really changed in my life in between. Different days are different, that is just how it is.

As part of my ongoing quest to define kindness I’ve also noticed some things which help define what it isn’t. One of these is the #PayItForwardChallenge2015 which has been doing the rounds on my facebook feed lately. Now I’m all for the concept of paying things forward and all attempts to be actively kind, the world would no doubt be a much better place if more of us did this. However my reaction to seeing this on a friend’s status was… – here it is in full in case you’ve not already come across it:

“My 2015 pledge…after all the recent terrible tragedies that have happened and are happening, this world needs as much kindness as it can get. I’m participating in this ‘Pay it Forward’ initiative:

The first five people who comment on this status with “I’m in” will receive a surprise from me at some point during 2015 – anything from a book, a ticket, something home-grown, homemade, a postcard, absolutely any surprise! There will be no warning and it will happen when the mood comes over me and I find something that I believe would suit you and make you happy.
These five people must make the same offer on their Facebook status. Once my first five have commented “I’m in” I will forward this message to you privately, so that you can copy and paste it, and put it on your status, (don’t share it) so that we can form a web of connection of kindness.
Let’s do more nice and loving things in 2015, without any reason other than to make each other smile and show that we think of each other. Here’s to a more enjoyable, friendly, positive and love-filled year …. Much love. xxx”

My reaction to this was initially one of restored faith in humanity shortly followed by worry: what will my facebook friends think of me if I put this as my status? Will anybody I know declare themselves in? What if X decides they’re in? How on earth will I find the time/energy/sanity to do this? What on earth would I do/get for them? What if I don’t get 5 people? It took me several hours of dwelling on these things before I decided I needed to take the plunge and make this commitment to kindness mostly because it was better than trying to justify to myself why I was not doing it. After a couple of days only 3 people had signed up and having thought about it a little more I decided to change the rules. That’s my objection to this well-intentioned scheme, I don’t think kindness should have rules. I wouldn’t want my friends to go through the same worries about signing up for this. I don’t think kindness needs to be a part of some sort of pyramid scheme. It’s not about changing the world, it’s about making the world a teensy bit better for even one person, not because they will then go on to pay forward that ‘debt’ but simply because that is the right way to live. I’m reminded of when I used to work caring for the elderly, I always used to say the most important part of my job was making tea. I stand by that, rather than the physical help I provided the greatest thing I achieved in that job was just sitting and listening to people over tea (and possibly just surviving daily the overwhelming heartbreak of seeing people living out their last years in poverty, often alone with dementia).
So I will still be trying to do something nice for those three friends and I will try to find the time and energy to do more kind things for others but hopefully for the right reasons – incidentally if anyone has any ideas about what I can get/do for my friend who lives the other side of the world and I haven’t seen for years that would be a real help! I’ve also been reminded of the lesson that kindness shouldn’t be conditional which takes me back to the point I made in a previous post that there’s no such thing as a debt of love – what is kindness if not an expression of love?
I nearly typed I will look for ‘opportunities’ to be kind above before I caught myself and edited it. The fact is every day is chock-full of opportunities for kindness. I was in a good enough place on Friday that I was able to be kind simply by not getting angry when someone’s mistake meant that I had to wait for half an hour. They were surpised that I wasn’t upset, that I was even able to be grateful for the extra half-hour’s thinking time (which I mostly spent writing some of this in my head). Kindness does not seem to be the norm in this world, we are all so very quick to judge and assume and be right about things. I really really love to be right! But it wasn’t judgement, assumptions or factual knowledge which helped me so much on Thurday, it was kindness. I am very lucky to know a few people who make consistent kindness look easy, these are the people I admire the most and who I would most like to emulate.
I fail to be kind. I have failed at least a dozen times already today and those are just the things I noticed. My failings today, in judging and condeming what I perceived as the failings of others (I may well have been right but I was not kind) reminded me of the looks I used to get when I was smoking while pregnant. Those people did not see a pregnant woman who had recently come off anxiety meds and was only just holding things together who really needed to smoke. They saw someone who was doing something that was bad for their unborn baby. I get that. They were right, what I was doing wasn’t clever but it was at the time necessary and a lesser evil compared to me losing the plot or going back on meds which could have had a worse impact on my child’s health. They were right but they weren’t kind. So in my arrogant judgements I missed many opportunities today. I did not give people the benefit of the doubt. I did not make allowances. I am quick to judge and assume and be right but I do know that it is better to be kind than right. Now I’d better go and try again.

Mother-daughter relationships across four generations; the confessions of a bad daughter.

This is the biggest problem in my life right now: I suck at being nice to my mother. Far from nice, some days I am downright cruel. I put her down on a daily basis, I mock, I shout, I scorn. I don’t know how to make things better.

To make a bit more sense of this I need to reveal some of my back-story. So much of what my mother and I do and say today is tied in with our past. I was raised mostly by my grandmother who was quite the tyrant. She controlled my life and my mother’s for many years. She made all the big decisions like which country I should live in (my mother worked abroad but my grandmother insisted she and I lived in the UK) or who my mother was allowed to see socially. When my grandmother eventually died in 2002 it came as a huge relief, we had feared she might live much longer fuelled entirely by spite.

My grandmother had her reasons for being the way she was. She loved us both although I’m not sure she ever really understood love. A wise friend once told me that there’s no such thing as a debt of love. With her it was all about that debt, I’d get home from school and she would list the housework she’d done and be aggrieved that I was not grateful. This would usually lead to a snowballing tirade of every petty slight she had ever suffered dating back decades. She often reminded me of the time when as a baby in a pram I had bitten her thumb… I digress, this post isn’t about her but about my relationship with my mother.

I think a part of the reason I treat my mother so badly is because my grandmother got away with that sort of behaviour for so long. Ironically another reason is that I’m angry that my mother never had the gumption to stand up to my grandmother. My mother tries desperately hard to please everyone. She’s generally very anxious and one of the things she fears most is causing offense. She tried desperately hard all her life to please her mother, an impossible labour of love for a woman so embittered.

My grandmother died alone. It was in the early hours of Christmas morning and we knew it was the end. She’d slipped into a coma some hours earlier. An ambulance somehow stretchered her off the balcony of the flat where we lived. I took photos of this. I’m not sure why. I think a part of me wanted to have a record of the event, perhaps to make sure it was real, it seemed like a good idea at the time and in some ways I’m glad I have something solid in the blur of it all. We did wait with her for a while as she lay there dying. That awful wait between each breath to see whether another would follow. The breaths went on. And on. I think it was about 2am when I convinced my mother there was nothing else we could do and so we should go home and get some rest. She did as she was told. She usually does. I don’t know if going home was a kindness to my mother and myself or an act of cruelty leaving my grandmother to die alone. Perhaps a little of both or just a practical need for rest. I am a particularly practical person in a crisis.

In some ways it was only after my grandmother’s death that my relationship with my mother began, or at least was allowed to exist without censorship. Throughout my childhood my mother came and went. Holidays were divided between two countries and we were never allowed to be alone. I think my grandmother was jealous that I loved my mother. I used to sneak into her room once I heard my grandmother’s snores and we would cuddle and giggle about things. I have always been very good at making my mother laugh. Sometimes we laughed too loudly, woke my grandmother and were told off. We were allies in adversity.

How did we get from there to here? I haven’t allowed my mother to hug me in years. I don’t really understand why but the thought of touching her, even holding her hand fills me with jumbled negative feelings I can’t begin to define.

One key problem is that I believe my mother is stupid. It’s a little like the teenage phase where you believe you just know so much more than your parents and they could never possibly understand anything. I may be stuck in that phase. In some respects my mother is very knowledgeable, there are a few narrow subjects where she excels and I am very proud of her. In so many ways however she fails to have any common sense and it is a constant source of amazement to me that she hasn’t come to serious harm as a result. She has no ability at all to understand how any mechanism works, perhaps it is that she can’t visualise the mechanical forces, but simple gadgets like a baby gate or a retractable dog lead are utterly beyond her capabilities. I have tried to teach her such things but while I am usually able to summon patience for slow learners my reservoir of patience with her is much smaller before I even start. I genuinely do not understand how she not only gained employment but succeeded to function for many years in a fairly well-paid job which afforded me many opportunities. As the name of this blog suggests I have a tendency to respect intellect more than heart. I am trying to address this but it is very much a work in progress. I do need to remind myself on a daily basis that it is better to be kind than right.

I’ve been wanting to write this post for a while. I really need to resolve things with my mother before she dies and it is too late. To some extent my reasons for this are selfish, it’s not all about wanting her to suffer less because of me but also because I do not want to have to live with the guilt once she is gone.

My mother plays the piano, she plays it pretty well. The sound of her playing has been a constant soundtrack to much of my life. For a long time I have been aware each time she plays that one day she will not be around for me to hear. This makes me cry. I know that decades down the line, if I am lucky enough to still be around, I will hear a piece she used to play on the radio and it will break my heart. My mother sometimes cries when she hears the tunes her father used to sing.

I am living with my mother again these days. I’ve lived independently in the past and will have to again in the future but for now it is an arrangement which suits us both, well, when I’m not shouting at her that is. She gets to see a lot of her granddaughter although she knows I don’t really trust her to take care of my baby. Throughout my pregnancy I was terrified that my mother would do something stupid that would hurt my child, she wouldn’t intend it but it could so easily happen. I don’t think this is an irrational fear, we’ve had enough near misses, she even managed to let P fall off the sofa aged 12 weeks because she was distracted by the phone. My daughter has brought us closer together though, we now have a shared love. I am learning to trust my mother (or just in luck?) a little more, she even gets to babysit while I take a bath or go out for a couple of hours – this scares me a lot but I do need down time and this is the only way that can happen. I do have to remind her still about things anyone else would think of without prompting like that P’s nappy might need changing or that she needs to offer her a drink. It has become easier as P gets older and becomes less breakable.

My mother also takes information very literally without applying practical knowledge so she consistently goes by the ‘use by’ date on food rather than actually looking at it and noticing when it is off (this does not end well!), she has similar unshakable faith in the weather forecast rather than her eyes. There are a lot of things she simply does not notice but she seems incapable of acknowledging her difficulties and instead tries to lie or justify herself – one example of this is the time she made me a piece of buttered toast and I found rice on it. She had used a rice-covered knife in the butter and some had found its way in there (a pet peeve of mine but understandable), she had then managed to transfer this to my toast, spread the butter and bring it to me without seeing that there were half a dozen grains of rice on it – I just don’t understand how she could not see that! Her eyesight isn’t that bad but she just doesn’t look at things or notice things while I feel like I notice every little thing. What upset me on that occasion however was her reaction to me pointing out the errant rice (admittedly I doubt I did this in a particularly nice way), at first she denied it but when presented with the evidence she started trying to argue it was a good thing because rice was good for me… I do not understand why she would say that rather than just admit she got it wrong. Not understanding her logic drives me potty, this is probably unfair but it is honest.

My relationship with my daughter is so much simpler. I love her endlessly and do my best to ensure she is as happy as possible while trying to teach her how to be kind, although I am still learning that myself. I am so much more forgiving of my daughter’s mistakes than my mother’s. Don’t get me wrong, I’m still a contender for world’s okayest mom and have my share of Homer Simpson child-throttling envy. I do however try my best, I generally accept that my mothering ability is reduced when my mental health isn’t great or if I’m tired etc. I can live with good enough parenting. If only I could find a way to be a good enough daughter.

I think another contributing factor is simply that I can get away with it. Just as she let her mother get away with being so horrid for so many years, I have now taken on that role and become the thing I swore so many times I would not become. There is a lot of my grandmother in me. I can get away with it because I am secure in the knowledge that my mother will love me regardless of what I do. I am spoiled.

I do depend on my mother an awful lot in my day to day living. She cooks (terribly) and does the laundry (much better since we got a dryer, she could never grasp that damp clothes will smell or that increasing exposed surface area by spreading rather than scrunching up improves drying!). It’s 3.27am as I write this and if I went and woke her and asked her to make me a cup of tea she would, she would complain but she would do it. I am scared for the future that I will not be able to manage a job and being a mother and all the domestic stuff all at the same time. I can do the domestic tasks, I struggle more with domestic paperwork (I have a problem opening mail and answering the phone, this gets me into trouble sometimes). I just find dealing with everything so exhausting. At the moment and in the immediate future I’m working pretty hard and I’m just about functioning, I mostly keep my head above water. This is only possible because of the support my mother gives me. She enables me to spend my time doing something I am passionate about and I am very lucky to be able to do this and know that something (OK perhaps something inedibly cremated or still semi-frozen) but something, will be on the table each evening when I am too tired to care. About two months ago when I was upset I kicked the kitchen bin and broke it – thankfully it is only objects which are on the receiving end of my violent tendencies these days (see previous post). However it has taken me a full two months, perhaps longer to decide on and order a new kitchen bin. Doing so today has been a real achievement for me. Strange but true.

I was planning on writing this post as things have been worse of late. I find myself losing my temper over the smallest thing. Last night my mother told me she’s got kidney “failure”. I use quotation marks because I don’t know if the failure part is an actually diagnosis or my mother’s interpretation of what the doctor said. It doesn’t seem to be terribly serious, apparently they said her kidneys are still working at 50% but they want to run some tests and find out why they’re less functional than they were before. I am still processing this news. I don’t know how I feel, I’m not even sure how I should feel. Obviously I’m scared of losing my mother and it adds to the guilt I carry about the way I behave.

The guilt is a big deal. I have enough guilt to work my way through to last several lifetimes. It is worse because my mother had breast cancer when I was 13. My grandmother told me repeatedly the cancer was my fault. There was at least some logic to this, I had tried to bolt from the dinner table and escape to the bathroom where I regularly locked myself in. My mother had tried to grab me, to catch me before I got away, and caught some of my clothing and was dragged by my momentum into a chair. It was when she was probing the resulting bruise that she found the lump.

Another all too vivid childhood memory was the day I realised I was stronger than my mother. We’d always fought tooth and claw, I wasn’t the easiest child and she wasn’t adept at dealing with kids so to force me to comply she ended up manhandling me and I fought back with all my might. One day, I guess I was maybe 7, in the midst of one of these fights, I hit her on the thigh so hard that it made her cry. I was shocked. I’m not sure I really understood before then that my actions could cause her such pain. I remember the guilt I felt when I saw the resulting bruise.

Another thing my mother said last night was that she wanted us to get counseling because she doesn’t understand why everything she does makes me shout and she can’t take any more. She even asked the doctor if her kidney trouble could have been caused by stress. I think this was harder to hear than the physical illness part. I did the only thing I could, I carried on as if I didn’t care. I’ve kept that up for over a day now. An imaginary voice asks in my head how I can sleep at night. I don’t . I don’t sleep well and last night when exhaustion took over I was plagued by nightmares. In one of them I was carrying my mother over my shoulder the way I carry P, she weighed about the same, I was trying to get her to the right part of a hospital. My grandmother also popped up in that dream, perhaps she’ll never really die while she lives in our minds.

For most of my life I didn’t want children. I didn’t want to pass on the monster genes and I didn’t want to become my grandmother. I’m doing better than I had feared as a mother, but it is being a daughter I am failing at.

I don’t know if we’re going to actually get counseling. She was relieved that for a change I thought she’d had a good idea. I had previously ruled out counseling because I thought she wouldn’t agree or if she did she would only be doing it out of acquiescence. Given how long it’s taken me to sort out the bin I can see this being another idea which falls by the wayside because I don’t have the wherewithal to follow through on it.

I find it very hard never knowing what my mother really thinks. I could argue anything and she would agree with me. Sometimes I deliberately argue the opposite of what I believe, wait for her to agree then use it as an excuse to lecture her about why she’s wrong. She is also terrible at understanding what’s going through my mind. I do feel that by now she should get me, she should know what upsets me. So it seems to me like she must do things on purpose because I can’t find any logic to her methods. 10+ times per day I want to (and quite often do) shout “but why would you think that /do that/ say that? That makes no sense!”

I feel like she will not or cannot meet me halfway. I explain time and time and time again why I am upset, why I am angry, and she cannot/will not change. A simple example, I have some sensory sensitivities which I’m only just starting to understand are different from what most people experience. I am very sensitive to light touch. My mother has taken to having her fingernails quite long. She regularly catches me with them as she passes me something and I hate this sensation. I also worry that if she’s inadvertently scratching me then she must be doing the same to P when she handles her. I have explained this as best I can at least 4 times and asked her (both nicely and nastily) over 20 times to trim her nails. I think this is a reasonable adjustment for her to make for the greater good, surely if it’s one less thing for me to snap at her about that is worthwhile right? Her nails aren’t painted and she isn’t vain about their appearance. For reasons I cannot fathom she refuses to cut her nails any shorter. I do not believe this is out of malice but I get increasingly irritated by each little scratch because it could so easily be avoided.

I think autism is a factor in all this. I so want things to make sense but I clearly can’t put myself in my mother’s shoes very well nor she in mine. Communication or rather all our failed attempts at communication are a big issue. I often wonder if my mother has problems with her auditory processing. She does not listen to the words I (or others) say but seems to grab a couple of words at random and jump to the nearest conclusion and it then takes a lot more explanation and effort to correct her assumptions and convey the actual message I’m trying to get across. For example I often ask her to fetch things for me when I’m pinned breastfeeding P or just being lazy, so I’ll say something like “could you get me X it’s upstairs in my room next to Y?” (I am doing much better these days at asking politely rather than barking orders). She will faithfully head upstairs and a minute goes by and I start to wonder if she looking for the wrong thing or in the wrong place. So I shout up the stairs “the X by the Y”, she can’t quite make out what I said but starts to mutter about how maybe I should get my own things instead of sending her on a wild goose chase (a valid point, if I depended on her less I wouldn’t be so frustrated by her difficulties). We both talk to ourselves quite a bit so half heard self talk is a constant source of confusion and misunderstanding. Another full minute ticks by and she shouts down “it’s not on the desk!” I lose it because this is the fifth petty irritation in the last half hour and I reply “I said next to the Y!!!” She finds it and brings it to me. This process is very inefficient and leaves us both needlessly upset. I try to slow down my speech and make things clear by only using key words but it doesn’t help, as soon as she’s made that leap to what she thinks she knows there’s no going back.

So here I am, it’s now gone 4.30am and I’m still awake going over this all in my mind. The only solution I can see involves me becoming a much better person. Somehow learning to let go of everything I feel and manage to be a decent human being instead. I can do this for short periods but I can’t keep it up. I try to use humour where I can, it’s always been a useful tool for me even if I’m not the greatest judge of when it is appropriate. I guess I just need to try harder. I need to get better at being kind and care less about being right because failing to be kind is as wrong as I could possibly be.

On being a bad person

Untitled

With the rank sweat of stale thought –
The heat wells up.
Hell beckons.
I dived and caught a robin,
Twisted its neck loose.
(The child and cat deserved the same)
Puzzledom pervades.
The perspiration of anguish is in the sights.
It happens…and scorches my sanity.
The sweet and sour in my mind
Produces noxious plays.
A word-thought becomes a gun
To trigger the bullet-hole-feel.
With no exit wound it cruises round my veins
The surface never far behind
It pricks my heart again.

I was 18 when I wrote that. I still think it’s powerful. I wrote an awful lot of tripe but I do think this might be a little better than most of them. The reason I think it has something is that I think it captures a snapshot of irrational anger. I remember the day I wrote it, well, I remember snippets. I remember it was a beautiful summer day and I remember being upset/irritated, I don’t recall by what. It clearly wasn’t so important that I remembered it. So this anger was petty. The key word is ‘deserved’ because clearly, as a mostly ok person I know that no person or animal deserved to be harmed because I was in a shitty mood. That still holds true regardless of how valid that mood might be.

I struggled with my temper when I was a child, I used to lash out a lot. I had to deal with the repercussions of that. As I grew older I learned to control my anger, or at least vent it in ways that were healthier for everyone (I found playing competitive sports helped a lot despite the social demands this put on me). It is the honesty of those lines which resonate with me still. That flash of irrationality, those seconds where I felt so angry, hard-done-by, confused, sad, alone and afraid that the only thing which made sense was to hit back, to hit anything, to somehow punish the world for the pain it caused me.

Naturally, and rightly, my outbursts as a young child were punished and I was repeatedly told they made me a bad person. I have made real progress since those days, in my adult life I’ve only really lost control of my temper once, there were reasons for this, good reasons, but as I said above that doesn’t make it right. The poem also reflects the pain of such anger, it was my veins the pain was coursing not another’s. Twinned with anger is tremendous guilt. I knew it was wrong, I knew it was bad and yet I couldn’t help but feel that way.

On a good day, when I am feeling rational and content I believe I’m an ok person. I know ok is an inane term but I use it deliberately because I’m not sure I believe I am either good or bad, I just am. I think most other people are too. I’m starting to believe that maybe there are no good or bad people (a controversial statement in light of recent events) but only good or bad choices. As with anything within the brain from learning to addiction it is the repetition which is key, thus a series of poor choices produces what many would call a bad person and vice versa.

On a bad day I still believe I am a monster. You believe what you are told after all and I was told a lot when I was young how bad I was, what a burden I was. Again we’re back to the reinforcement of repetition.

I’m sharing this here because I think it needs to be said. Perhaps they do that in anger-management therapy (I’ve not done any such therapy), perhaps there’s support groups where someone stands up and says “Hi, my name’s Dave and I’m a right bastard sometimes, I also like dogs and long walks by the sea…”

I’d like to make it clear that I’m not trying to defend people who act in anger, that way lies only more pain. What I’m trying to explore is the fact that anger is a part of us, I believe each and every one of us has the capacity to do terrible things.

There’s been a lot of people on my feed recently trying to distance atrocity from insanity, I think they are right, the two are far from synonymous. While anger is also a psychological issue and can often be a part of mental illness there is also extreme anger going on every day in the general population. I watched a woman yesterday get incredibly angry because she had had difficulty parking in the car park of a small business. In one respect she was right, the car park was too small for the number of customers on the premises and I too had had difficulties. On the other hand the way she shouted at the staff was inappropriate. What I really liked however was the way the staff dealt with it, they did their best to help her and it clearly failed. After she had left I heard one explaining what had happened to the other and rather than saying the woman was crazy or irrationally angry she simple said “she’s clearly having a bad day”. I didn’t feel there was any subtext to this statement, it wasn’t a polite code for ‘nutter’ in case she was overheard by eavesdroppers like me, I believe it was a moment of real empathy and kindness.

Some days I still want to lash out at the world, I want to make it pay. I don’t expect to realistically ever achieve a zen-like state of harmony when this doesn’t still happen. What I need to learn is that it’s alright that sometimes I feel that way. If I felt like that all the time then I’d have a bigger problem to address but for the most part I’m not a bad person, I’m not a good person either although I do try, I’m an ok person, just like you.

Wordless cry

There’s something in me screaming,

Something I can’t express,

Something in me screaming,

That my tongue just won’t confess.

 

I don’t know how to say it,

The words just don’t exist.

There’s something in me screaming,

With tortured words of bliss.

 

I want to run away,

To find a place to hide,

So no one hears me screaming,

What my bleeding heart can’t hide.

 

The panic leaps upon my breast,

And troubles my calmed mind,

I really can’t express the rest

That’s rotting here…

inside.

 

I wrote this when I was 15.

The price of friendship

“Shall we get another coffee?”

“No”, the correct answer to that question should have been “no”, I see that now, ain’t hindsight great? I could even have managed a more polite version like “I’m fine thanks but you guys go ahead” or “I think I’ll just have a water thanks”. I could have said those things today but I didn’t and I paid the price.

I felt under pressure to respond in real time you see, I’d already made a lot of decisions – where to eat, what to eat, what to drink, whether to have desert, what to drink again and so far I’d done OK with those choices. Choices often throw me because I need time to think things through but I feel under pressure socially to make snap decisions and so I panic and say the first thing that sounds okish enough in my head, in this case “sure”.

I could have then changed my mind once in the coffee shop but again I failed and just ordered what I usually order because doing that meant that I didn’t have to think about it. Then my generous friends returned with a small bucket of coffee which I really didn’t want. Even at that stage I could have apologised and explained that I really shouldn’t drink it, they would have understood and not minded, they are good people. Yet they amused the tired toddler so that I could drink in peace and I obligingly gulped most of it down. I paid the price.

I had already not been feeling great. I’d made a poor choice two days previously that involved some reduced chicken sandwich filler *shudder*. As a result my body still wasn’t great with solids, lunch that day was the first proper meal I’d had in 48hrs and chucking a bucket of coffee down my neck really wasn’t my wisest move.

The last few days my anxiety has really ramped up too as I try to deal with the unavoidable reality of the transition back to my usual routine next week. The heart in throat, inability to breathe properly, anxiety of it all only exacerbated the nausea. My greatest achievement today has been to dub anxiety ‘The Rabid Wolf’, I’ve been looking for a term to personify it for a couple of years or more and I think this might just be a good fit. The wolf was ravenous today.

Another factor was the all the other social stuff I’ve had to endure lately (oh and hormones but I do try not to over share too much!) While I managed very successfully to avoid all the grief that comes with Christmas (see previous posts) I completely failed to appreciate that this would then mean that everybody would want a piece of me over New Year’s week. I genuinely think it would have been healthier if I could have donated a pint of blood to each of them in lieu of having to socialise. The problem is I care about these people, I don’t want to offend them, and I still feel like I might do even though they are good people who would probably be OK with me avoiding them until I’m in a better place. (I think I’ve done rather well in the last year or so whittling down my friends to the really decent ones who generally contribute to my life in a very positive way). Also it wasn’t just about me today it was about P as they are her godparents and even if I feel terrible they’ve already gone months without seeing her and she them and I knew she’d have a fantastic time today. I paid the price.

It wasn’t just them, on Weds I didn’t really do NYE, or at least I did it in my own way. This involved sticking to my fortnightly routine of entrusting P to my mother for a couple of hours (something that makes me inclined to pray again) and going for a quiet drink with a friend. She has become my closest friend in recent months, I daresay the friendship works because she has more than the occasional Aspie trait. I’ve even told her I think she’s on the spectrum and she’s OK with that, she went home and did the AQ (for what that’s worth) and came out full Aspie as predicted. I actually nearly fell over laughing the time she revealed she’d always thought of herself as being on the “wrong planet”, thankfully she took my laughter well. So it was a comfort to resume our routine of a quiet beer even though our usual haunt was much busier than it usually is on a Wednesday evening. This week however she poured her heart out to me and had a cry on my shoulder. I’m OK with that, she’s a good friend and although I found it a little awkward trying to work out when I should put my arm around her and trying to decide if patting her on the knee in what I hoped was a sympathetic manner was an appropriate thing to do especially as all this happened with the other punters gawping, above all it was an honour that she felt she could open up to me. I’ve off-loaded on a few people in my time and I know how hard it can be to trust someone enough to let them see you so vulnerable. I guess that’s why I hide behind the anonymity of this blog and twitter account. So all that emotion took its toll on me a little and I paid the price.

Then I saw another friend on Thurs, one I’m mostly friends with because she has a child a similar age to P and I feel to be an OK enough Mom I should occasionally organise playdates with someone, this friend helps me tick that box. She’s also a very kind person, a committed Christian (who doesn’t know I’ve lost my faith) and has lots of autism in her family. She also totally didn’t believe me when I told her I thought I was on the spectrum. Perhaps I didn’t explain it well, perhaps I just don’t fit her concept of aspergers closely enough. The subject hasn’t been raised since although if/when I finally manage to get an official diagnosis* I may tell her, so long as I can find a way to do this kindly rather than in an “I told you so” way…   let’s not forget Thurs was the day of the inadvisable chicken consumption too and there was yet more guilt as she gave P a Christmas present without any reciprocal gift from me. I started to feel dreadful while with her that afternoon but my communication skills, such as they are, were fully occupied trying to appear interested in what was said, remember that she would probably prefer it if I paid some attention to her child as well as my own and not say/do anything too off-piste. It wasn’t until I was on my way home I realised just how ill I felt. I paid the price.

So having cancelled one commitment and ignored others I spent Friday feeling very ill and indulging in generous amounts of self-pity I guilted myself into going today even though it meant about 3hrs driving and too long in an enormous soft play place which was rammed with incredibly loud kids, bright colours and constant movement. I usually love driving and find it soothing but with my anxiety so high even a calm road on a clear day would have felt like the wildest themepark ride, it wasn’t a clear day and I’m still not entirely sure how I got home again alive.

Then, because I had let on a little to these friends that my mental health has been dodgy of late I had to face the concerned questions from each of them in turn while the other amused P. I know they asked out of kindness and I know they would help in any way they could, they are good people, not perfect but far better than I deserve. So I had to explain a bit about where I’m at right now (like I actually have some clue!) and I muttered a bit about depression not always having a clear cause. It seemed to satisfy them. I worried quite a bit that I wasn’t as cheerful as I should have been. Worried that perhaps they thought I didn’t appreciate how good they are to P and the presents they gave her, particularly as I failed to get them so much as a Christmas card. Again I reassure myself that they are good people, they are my friends because they like me and they love P to bits, at least the latter I can understand. So I said yes to the coffee I really didn’t want and I drank it quickly and I paid the price of friendship.

*It is with huge trepidation that I admit for the first time here that I’m not (yet) diagnosed with autism. I’m afraid some people will read what I write and say, or maybe even just think “you can’t have autism because…” because of whatever reason they feel qualified to judge my autism. I hope to be able to write about my journey through diagnosis and beyond.  The bottom line is I need to accept and fully believe in my autism right now because if I start to doubt it my mental health goes well and truly down the toilet. You see autism is the only thing which makes any kind of sense of my life, if I am not autistic then the only logical alternative is that I am all kinds of batshit crazy and insanity isn’t an option for me right now thanks so I hope you’ll respect my self-diagnosis until I can get an official one.