Theories of Autism, motherhood, oxytocin, bipolar and self-centredness.

I have been rethinking my oxytocin theory recently. I’ll admit it was based on very limited knowledge and this hasn’t really increased. The gist of it was that the first 8 months or so of my baby’s life were the least autistic of my life primarily because of whopping doses of oxytocin released by all the skin to skin time spent breastfeeding – there is a good reason her nickname is Piggy!

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My next post may discuss whether love of chocolate is hereditary or learned behaviour

During that period I coped very well, I felt I communicated well, I was more sociable than usual, even with a newborn and I made some new friends. Above all I was overwhelmingly happy. It is undoubtedly the happiest period of my life even though it came immediately after one of the worst times of my life.

This oxytocin theory was based on a smattering of reading which seems to indicate oxytocin may reduce core symptoms of autism. I do partially still subscribe to this theory and I would like to read more about the role hormones play in autism or perhaps it might be more accurate to say their role in mental health. Several people have suggested an alternative however which is based on those months simply not allowing me the time for introspective reflection which is tied in with my anxiety and depression. I think there may well be something in this.

I’ve read several account of autistic people coping very well with the necessary unpredictability of traveling, perhaps because they expect the unexpected and stop attempting to predict so much. Much as I disagree with the ‘magical world’ phrase I do think that autism is most likely centered around a primary deficit of prediction – at least that is my experience. Therefore it makes sense that I coped so well with those first months of motherhood because it was such an unknown. I had no idea what to expect, no idea how I would feel, no idea how to do anything. I deliberately did not read a single book on parenting because I believed, and still do to some extent, that mothering is instinctive rather than learned behaviour. I discovered the phenomenal love and joy of motherhood and somehow took it all in my stride. Slowly I learned more from others, I gradually saw that my personal philosophy fitted in with a group of parents who proclaimed themselves as crunchy but evidence based and I learned a lot from some wonderful people. I digress, I should get back on topic before this becomes an ode to babywearing (Best Thing Ever [after breastfeeding]).

I am revising my opinion that I was ‘less autistic’ during that period, I think autism is a constant that does not change and I was just as autistic then as the day I was born and as I will be at any point in the future. The difference was in both the circumstances of my life and the environment I was in.

It was a period of intense happiness, perhaps even manic. I’ve also been thinking about bipolar quite a bit over the past months. I did a screening test which would indicate I’m very bipolar and it would seem there is some sort of relationship between autism and bipolar. If I had not recognized the autism in myself and sought diagnosis for this I think I could easily have been diagnosed with rapid cycling bipolar. While I’m not qualified to say for certain that I do not have bipolar I do think this would be a misdiagnosis and limited understanding of autism within mental health services may well have led to treatment, including medication, which I believe might well have done me more harm than good. This is all opinion and assumption but the possibility is one that scares me. It is also very wrong that I fear the mental health system rather than the condition of bipolar itself, perhaps I have heard of and experienced too much bad practice and am resigned to the fact that I’m far from ‘normal’.

This leads me to my final theory. My therapist puts forward a reasonable argument that I’m not bipolar but my low moods are simply depression which is also common in autistic people and my hyperactive manic times are tied in with my ADHD traits (not officially diagnosed but clearly there and again another area of huge overlap with autism) or explained by the sheer joy of indulging in an obsession. Therefore another explanation for such a long period of unusually high emotional well-being could simply be that I was obsessed with my daughter and it happened that this obsession was appropriate and encouraged by society.

In conclusion I think it’s rare to ever find a clear cause and effect relationship when there’s autism in the mix of variables. So I still believe oxytocin plays a role in my happiness and perhaps in my lack of it since I’ve been spending less time with my daughter and this has coincided with a deterioration in my mental health. However this logic applies just as well to the distraction from self-centredness or obsession theories. It seems most likely to me that it was actually a combination of these factors, possibly with the addition of other things which have not occurred to me.

What have I learned from this? I’m trying to take on board the thoughts of others more, their input is often helpful if only I can listen well and try to retain alternative perspectives. I know that being with my daughter is good for me, I cherish my time with her and I even use her as a tool. If I’m anxious in the night cuddling her can help me regulate my breathing, I do appreciate this is something of a role reversal in that typically she should be the one who needs reassurance after a nightmare but she seems happy with this arrangement. Every day I think and learn a little more. Depression has been debilitating for me recently as I wrote about in my previous post however even in the midst of apparently ‘doing nothing’ there is a lot of processing going on as I hide from the world. Little by little I crawl in the right direction and I am grateful for the many people who contribute to keeping me facing the right way on this journey.

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Depression – the dogged fight

“Be kind to yourself” I’m told that a lot these days. It is kindly meant, I even use it myself when I see others in distress but the bottom line is I’m pretty shit at being kind to myself. If you asked me to give you a list of my top ten faults that would be much easier. Perhaps this post is about post-diagnostic self-acceptance, I’m not sure yet, and yes, I got my diagnosis, I’m now officially autistic. Since then my mental health has been pretty shoddy. I do think a big element of this is the amount of build up the diagnostic process had in my head, it was a big scary goal for such a long time that now I’m not sure what I’m aiming for. I do think my mental health issues are tied up in my autism, I don’t think the two things can be easily separated. I think pretty much any activity that involves other people can be stressful for me and I need downtime afterwards to recover. The problem is life isn’t like that, I can’t have one hour of dealing followed by three hours of recovery and still function in the way that I would like to. There are times when I need to step away from my day to day life because self-preservation kicks in and on some level I know that hiding in bed refusing to be a participant in life is the best solution for the moment. Coupled with this however is oodles of guilt. There are things I ought to be doing. There are things I can do at other times, things I can do easily that become insurmountable for me at other times. This is where the inner-ableism comes into play. I judge myself, I judge hard. For every thought where I am able to justify taking a time-out to recover from something there are at least ten thoughts shouting “you’re stupid”, “you’re pathetic”, “other people don’t have this problem”, “you’re making excuses”, “you’re lazy”, “you’re a waste of space”, “you’re spoiled”, “you’re attention seeking”, “you’re useless”… the tirade of self-abuse is endless. I do try to interrupt those thoughts, to somehow break the cycle but that too requires effort and since I’m already needing recovery time that is extra hard. Some days I lose badly, I capitulate and hide myself away locked in the self-hate patiently waiting for something to change. Other days I do better, I might not win from all perspectives but I am able to say “hang on, you are not to blame, it’s ok to feel like this”. The thing is it never really stops, the only time I feel at peace is when I’m absorbed in something and that isn’t always something that’s productive or useful, recently I’ve become rather obsessed with a jigsaw app (stereotypical I know and this in no way affiliates me with A$!) and all I really want to do right now is sit and do yet another jigsaw on there. I can succeed at that, I don’t have to really think I just look at the pieces and move them around until I find the ones which fit together and then I start again with a new set of pieces which look slightly different.

I have been telling people about my diagnosis a bit. Mostly trusted people or people whose opinion matters little to me. I still feel as if I’m justifying myself to some extent. I would like to be open and honest about everything and say “it’s not you, it’s me, I do want your friendship but that thing you just suggested we do is my idea of hell right now, and yes I know I managed it just fine last month”, there’s probably a pretty strong argument for the fact that if people can’t deal with those sorts of truths I probably don’t want them as friends anyway.

One thing I hate is feeling needy, I feel like I’m constantly whining saying “look at me, look at my pain”. I do want people to look, to listen, to learn but I also want to be different from how I am right now, I want to be the person who says “I get that, I’ve been there, I survived and now I’m ok” but I don’t really believe that’s ever going to happen. I’ve had 32 years of lurching from one crisis to the next, at least that’s how it feels and no matter how much therapy I have or finding the right cocktail of drugs will ever change that. So I do need to accept that I am not the person I would like to be, I am not perfect. I need support, sometimes I need more support, sometimes less. It seems I am indeed needy and I don’t like how that impacts on others. I would like to be more independent, I would like to be useful.

I could live another 50 years or so. That’s a long time. I’d like to be able to give more than I take from people in that time. I have a sense of borrowing, I borrow resources in the form of people’s kindness and patience with me and I feel indebted. I would like to pay back on those loans, I would like to at least break even. I will never get it entirely right, I will always be autistic, I will always be me with all the failings I have but I do need to keep trying and hoping. I live for a future where I am enabled to do better and help others. I know that I should live more in the present moment and I try to do that sometimes but I’m not very good at it, I’m much better at thinking about what I want to do in 5 years time than in 5 days time. I somehow need to learn to live with myself, to find a balance between my idealisms and my weaknesses, to find a way to use my strengths. So in the darkness I wait for the hope of the future, I’d like it if somebody held my hand while I’m here.

Lines in the sand

For a long time now I’ve put religion on the back burner in my mind, there’s always too many things going on for me to have the processing time I need to even contemplate how I feel. The purpose of this post is for me to draw a verbal picture of where I am and perhaps get some clues in the process about where I’d like to head towards and how to get there.

Background – I was a practising Christian for 15 years. I had phases of greater or less faith but I felt God was a constant and that I would always return. I have been to many types of churches. When I came out as gay it had no impact on my faith, I was still the same person, my sexuality didn’t change anything about my relationship with God, all that had happened was that I admitted to myself that I liked women. I can live with the Christians who think homosexuality is wrong in the same way that I can live with my devout Catholic friend who genuinely believes it is wrong for me to be a Protestant (let alone a gay one!)

A couple of years ago I lost my faith. I was in an abusive relationship and part of that abuse involved using my faith against me. I was told repeatedly what a hypocrite I was and what a failure I was both as a Christian and as a human being. Now that I have some distance from that relationship I can see that she was wrong, she was confusing being a Christian with being a perfect person without flaws and the two are not the same. But somewhere in the midst of that terrible time something in me snapped, I almost felt it ping like a rubber band under too much tension. I had tried and tried and I knew I was in the right and it was she who was wrong about my faith but in the end the only solution was to take that weapon away. It was with relief I let go of God because I needed to survive.

I’ve been going to church on and off since then. I go through the motions and see people who are mostly kind. I take my daughter, I’m not even sure why I take her, I think a large part may be simply that I had always planned to raise my child in faith and I don’t have a plan B, I’m not clear on what the alternative is.

Recently as my mental health has declined I’ve not been going. Dealing with people and feeling I have to lie about being OK and the hypocrisy of going but not necessarily believing has all been more than I’ve been able to handle.

I’ve been trying in snippets of thought here and there to work out what it is I do believe and where I stand within the framework of theology. So my current catechism goes something like: I think the world is too clever to have happened by coincidence, I think there are ” more things in heaven and earth” than we can understand and I know I’ve had experiences in the past which can only be explained by the supernatural (not even hallucinations or coincidence could account for it all). So I guess I believe in intelligent design and some sort of spiritual entity. That’s a start.

I keep seeing a quote from the Dalai Lama on my timeline “my religion is kindness”. As you may have noticed, Kindness is a big thing in my mind. So my faith consists of I believe in something more than this physical world and I believe we should strive to be kind. I think for now that is enough for me. I’m not sure where Jesus or the Bible or the church or anything else of Christianity fits with who I am. At the same time I am the same person that I have always been and I will continue to be.

This may well tie in with my ongoing process of self-acceptance. I need to be able to love and forgive myself before I can let God’s love into my heart and before I can accept His forgiveness.

In my mind the Christian friend voice advises that I should pray. I should ask God for help in this. There was a time this was true for me, it may still be true but I am not praying. Some would even argue this post is a prayer in itself but that perception is outside of my control. I am not ready to engage in faith again, I may never be. Over and over again I come back to the Footprints story – I feel I am very much at the point of the story where I’m pointing out there’s only one set of footprints at the worst of times. I may reach the end of the story and accept God’s love again or I may not.

So for now I believe in the importance of kindness. I think that’s pretty OK. I think God, if he exists and is anything like the entity imagined by the faithful is big enough to understand my heart and where I am these days. He is patient enough to wait for me whether I choose to come or not. In the meantime I have myself and a heart that is learning, slowly and painfully, to be a little better at practicing the art of kindness.