What you see and what you don’t

What you see:

A mum taking her kids to the school Christmas fair.

What you don’t see

The ride home after where I scream and scream and scream because it’s the only safe place I can do this without someone calling the police. How hoarse and sore I am afterwards.

What you see:

Me going from stall to stall like any other mum, buying child-made Christmas tat.

What you don’t see:

Me, later, curled up on the floor in the foetal position, shaking.

What you see:

A busy school hall with lots of people enjoying themselves

What you don’t see:

Sensory hell: the echoing of voices in the hall, all the individual voices and noises that come together in a great cacophony. The searing heat which makes me feel like I’m actually on fire. The smells, all the terrible conflicting smells that assault me. The terror of not recognising a face in time or not being able to process someone’s words above all the background noise. The flu-like symptoms that linger for days afterwards.

What you see:

Me exchanging pleasantries with other parents and teachers.

What you don’t see:

The conviction that I am doing something wrong, that people must be angry with me or judging me in some way. The post meltdown period of being non-verbal where I have to sign or write things down for my daughter to read because I just cannot speak verbally for hours afterwards.

What you see:

Me queueing for drink and a festive cupcake.

What you don’t see:

Me sobbing as meeting the basic needs of the kids afterwards feels impossibly hard.

What you see:

Me sharing a joke with another mum

What you don’t see:

The self-harm later which I desperately try to steer so that I don’t do any permanent damage.

What you see:

A naughty child, wildly out of control and wilfully ignoring her mum’s pleas to enjoy herself in ways other people are more comfortable with.

What you don’t see:

A kind girl who accepts that sometimes Mummy can’t cope. A girl who tries her best to comfort me by bringing me items that would soothe her. A girl whose most frequent communication (verbal and signed) is “I’m so sorry” and “I love you”.

What you see:

Me leaving a little early, perhaps looking a little frazzled as the mask starts to slip.

What you don’t see:

The days it takes me to recover from this event, the exhaustion, how we live on microwavable food and things like taking a shower become a huge achievement if they happen at all.

What you see:

Me joining in, pretending to be part of a community.

What you don’t see:

How badly this makes me want to die, how my real community are the only ones who I can allow to see the truth because it is also their truth.

What you see:

A mask

What you don’t see:

Me.

What you think:

There’s a mum doing a typical mum thing, no big deal.

What I think:

Why do I do this? Why do I try so very hard? Why can’t I just accept that doing typical mum things is too difficult and usually not worth the effort?

(Because I love my daughter and I don’t want her to miss out on things her peers get to do).

What you think:

I’m not a bad person, I wouldn’t judge someone for being disabled or having dodgy mental health. I am approachable and would try to support them, they could totally tell me if they were struggling.

What I know:

It is not safe for me to admit how bad things often are. I cannot afford to drop the mask and be perceived as not coping. Asking for help only makes me more vulnerable. Being stuck in this situation makes me unspeakably angry at the injustice of it all but I have to suck it up and just carry on letting you believe what you see because the alternatives are unthinkable.

A photo of a tacky child made Christmas bauble with glitter and starts stuck to it

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Whistling in the rain – an autism anecdote guest starring Kipper the dog

I was going to tweet about walking the dog in the rain, about the joy of being able to go out and enjoy the countryside at a time when pouring rain meant that most people would be staying indoors. I was going to say it’s not that I particularly like the rain, it’s more about the lack of people. Then one thought chased another as they do and it became evident that I would need more and more tweets to explain myself and then I would feel guilty about hogging people’s timelines and so the only solution was to write it as a blog post. This may well be an example of autistic over-thinking, another tangential example is my friend, undiagnosed but I have zero doubt that she is ‘one of us’, who went to great lengths to explain to me this week that she had not copied me by having her hair cut short, it was that it was getting in her way and so on, it had clearly been worrying her that I would somehow think badly of her for choosing to cut her hair shortly after I had decided finally achieved getting mine cut. I actually hadn’t even noticed that she’d had it cut! I digress.

So I was going to say I don’t like rain that much, thinking about it however, there are a lot of things I do like about the rain. Many of these are sensory in nature. The sound of the rain is soothing, I am not alone in this as the existence of many YouTube videos testifies. The pitter-patter (surely one of the loveliest onomatopoeic words) of rain on my hood, on rooves and so on isn’t so dissimilar to white noise. Rain also means that the sky is likely to be grey and overcast, qualities not generally appreciated by people but for me a welcome relief. I’ve been struggling increasingly with (or perhaps increasingly noticing) glare and high contrast light. The muted light of winter is much more suited to my visual processing – I am currently awaiting assessment for Irlens syndrome, this may be a factor here. Even the way my sodden clothes clung to my skin was pleasant in a way not dissimilar to my weighted blanket. I would like to invest in higher quality waterproof clothing but Money is an area of life I’m failing at impressively these days. The smell of rain on the scorched ground is also a pleasant one for me, we haven’t had any rain for weeks and this summer has been warmer than usual. I’ve been struggling a lot with the high temperatures. I’m bored with my own puns about summer putting the ‘melt’ in meltdown, umpteen meltdowns later it’s just not funny anymore. I’m actually looking into moving home to somewhere with a generally slightly cooler climate – The Move is something I’d like to write more about in future posts.

Thinking all these thoughts and others about the rain made me think of one of P’s favourite books.  I did promise Kipper would be making an appearance in this post, partly because I think this blog would benefit from a few more pictures. Kipper’s Rainy Day by Mick Inkpen (what a fabulous name for a writer!) goes like this: “Kipper loves the rain because rain makes puddles. And puddles make… a splash!”

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Let’s ignore the grammatical issues of starting a sentence with a conjunction… ok I can’t do that, let’s just state that this is clearly poor use of grammar but the book has other redeeming features like cute animals. The law of sod states that having criticised somebody’s grammar I will now make 53 grammatical errors which will be pointed out by other zealots. As a friend of mine is fond of saying (this may in fact be a quote from somewhere): the price of pedantry is constant vigilance! I digress again. The book is a lift-the-flap book and goes on to describe several animals who (allegedly) like the rain.

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The story culminates with a cat who does not like the rain and a statement that the thing Kipper likes best about the rain is getting dry again. I have some issues with the idea of getting wet so you can enjoy getting dry, it seems rather like Allen Carr’s analogy of putting on too tight shoes just to have the relief of taking them off. My daughter however loves this book. I therefore know it by heart. She particularly loves the cat being sad about getting wet and then being happy again as Kipper dries him. I’d rather like to add a page to the book – “does anyone walking the dog like the rain?… This autistic does!”

I’ve not been having a great day. I’m in that awkward place where things aren’t bad enough to be labelled a ‘crisis’ in my head, things are just averagely bad. This would be an ideal time to draw on friends’ support but communication is also harder right now (as opposed to when things are Really Bad when communication is impossible – ha!) Yesterday, despite being very much in this not great mental place I managed to do some things which were hard. I went to a medical appointment in a new place with unknown healthcare professionals – always going to be stressful. I also took the dog for a walk on the beach, somewhere I usually love but has been out-of-bounds over the summer as there have just been too many people. I don’t cope well with the public. I was lucky yesterday, despite the weather being sunny there weren’t many people on the beach. This is what lead me to making the most of the rain today. There’s a real safety for me in rain, the more intense the rain the lower the probability of people being out in it. I’ve had a lot of bad experiences with people, strangers, shouting at me apropos of things I can’t begin to fathom, I don’t understand why this happens to me so much. I have so much anxiety about going outside, even in my own garden. Another key factor in wanting to move is my need to live somewhere far less populated than where I am now. It varies with how well I’m doing but often I feel leaving the house is putting myself at risk, at unnecessary risk. I do however love being outside, particularly on the coast or in the countryside with the dog, he is good company. The fresh air and exercise are good for me physically and mentally. There’s also the responsibility of dog ownership, I am compelled by this duty to walk the dog at least once a day. I know many people don’t bother and the world will not end if I fail to walk him but I love him and walking him does me good – generally, so long as people aren’t unpredictably awful.

So I have achieved a small thing, I have ticked the boxes of walking the dog and getting some exercise today. This makes me feel a little less terrible. It doesn’t solve all the things which were upsetting me earlier today but I did at least take a break from them which is something. Dog walking can be good self-care for me. I even caught myself whistling as I walked along. I don’t walk with the typical gait of a person walking in the rain – head bent, slightly crouching, trying to escape every drop. I relish the safety of being able to go out and I hold my head up with a genuine (as opposed to when I am passing) confidence. I was whistling contentedly in the rain for a while, for today that is enough.

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(Pic of the faithful hound while walking on holiday recently).

On Naming Names

I stand and watch the other parent call their child by name as they encourage them in a park: “Come on Isabel… well done Isabel!… Isabel where are you hiding cheeky girl?” This is a thing I cannot do. I can physically talk, I have verbal skills, I don’t stutter, externally I am usually able to pass for neurotypical. Yet I cannot use my daughter’s name, the word is there in my head and yet it’s so hard to get it to pass my lips. This leads to all sorts of linguistic acrobatics until I find I simply have to use it. The responsibility of choosing a name for my child was particularly hard for me, particularly as there was a time limit on this. I find using her name is not so bad somehow if I’m doing something like taking her to the doctor and checking in for the appointment, I expect to be asked for her name and that I can manage, perhaps because it is compulsory.

It’s not just my daughter’s name I have this issue with. For me using people’s names feels similar to maintaining eye contact, I can do it, I can force it but it’s never comfortable. Some autistic people have described making eye contact as similar to trying to look into the sun. Nicknames or things like job titles or the role the person plays in my life feels somehow safer ground, something I have a little more control over.

It was in fact this issue with my daughter’s name which lead me to realise I was autistic. (Forgive me if I’ve described it before on this blog, I don’t tend to reread posts once posted). I was reading Look Me In The Eye by John Elder Robison. It was by no means the first autistic autobiography I’d read, I considered myself pretty well clued up on autism already. John described how he couldn’t call his new baby brother anything other than the nickname he’d given him – ‘Varmint’ if memory serves. This rang such a resounding bell with my experience with my then baby daughter that I seriously considered for the first time that I could be fully autistic myself. Until that point I had believed that I was just particularly empathic (!), that I could put myself in autistic people’s shoes fairly easily because of my experience with depression and anxiety.

A few of my ex partners complained that I never used their name. I’d always use terms like ‘hun’ or ‘love’ instead, never the name. Going out on a limb and making assumptions about how others might feel here – I think it’s a bit like if I were to call my mother by her first name instead of ‘Mom’, that would be weird for most people right? (Yes I’m a British person who says ‘mom’ instead of ‘mum’,  it’s because she called her mum ‘mom’ as they lived in a ‘mom’-using country when she was growing up, I do however always refer to her as my mum as this is what people expect).

So people end up with different labels which I use to describe them: my childminder, my friend who is a teacher, my pregnant friend, the friend I go to the pub with and so on, bizarrely referring to someone as somebody’s something like saying ‘Bob’s friend’ or ‘Mary’s sister’ isn’t so bad, a further degree of emotional separation from the name perhaps…  For the most part this doesn’t bother me, I’ve far greater problems than this strange inability to use people’s first names and I’m well used to finding workarounds. It does bother me with my daughter though. I know it’s ok for me to say “Well done darling!” or “Come here you little hooligan!” instead of using her name, I’m sure there’s many other things which are far worse about my parenting. Yet it niggles and I have a sort of envy of people who can so freely call their child’s name across a playground.

I have some hope. As with Robison my nicknames evolve over time – a quick google tells me I was both right and wrong, his kid brother was originally nicknamed ‘snort’ and then later ‘varmint’.  My daughter whose original nickname was ‘Piggy’ has now become an approximation of her real name which she instigated as a way to refer to herself while she was learning to talk. Now she has learned to say her name properly but the approximation has stuck. I’m aware it’s not her real name but it’s as close as I can get for now.  I still refer to her as P online, mostly for ease and anonymity and she is still Piggy with friends who have come to terms with this nickname – some people have been very judgemental about this name, saying it’s unkind etc, like I had any choice over what my brain chose to label her, it suited her as a baby who was quite the frequent feeder.

These issues of identity mirror my own in some ways, I take pains to protect P’s identity online as I do my own. There are some trusted people who know my real name as well as this alter ego, they are few and I plan to keep it that way. The anonymity gives me a freedom to be more honest, however unsavoury that can be at times.

Culpably obsessed – the difficulties of obsessing over a person

Why write this?

I think this is an area of autistic experience which is under-represented. I imagine this is to do with the stigma surrounding stalking behaviour. It is also a deeply emotive subject and the sort of thing which experience has taught us to keep private so I think breaking this taboo is difficult. Why talk about it at all? Because this is something which causes a lot of pain to many autistic people like myself

– here’s an example http://wrongplanet.net/forums/viewtopic.php?f=3&t=144092&start=0 – and so I hope that my attempt to better understand this issue may help others.

I’ve been thinking about this quite a bit recently, particularly because an autistic friend has really been going through the mill of being obsessed with someone who doesn’t reciprocate those feelings. I’ve been there, it’s a really sucky place to be. Why do we do this to ourselves? Firstly, I’m not convinced we really have all that much choice, the saying “you don’t choose who you fall for” is especially true here and the autistic need to fixate on something is inherent to the condition.

So what do I mean by obsessions with people?

We know autistic folks do like a good obsession (or ‘special interest’ if you feel the term ‘obsession’ is pejorative, personally I have no issue with saying obsession). We know that these obsessions can get in the way of other things where the strength of obsession makes everything else pale into insignificance so if we’re asked to do something not relating to our obsession it can be really hard to drag ourselves away from it. While it clearly relates to the ‘restricted or repetitive interests or behaviour’ from the autism diagnostic criteria there’s often a comfort in obsessions. So even though this is something which is considered negative under the medical model of disability it can also be a great strength and I would argue the intensity of interest is directly responsible for many of the great talents of autistic people.

Obsessions with people however are different. Sometimes they can be with a celebrity or historical figure and I’d say these types of obsession are safer as they are simply harder to act upon unless we happen to have access to celebrities or a tardis. When the obsession is with someone you know in real life things get complicated. Unlike obsessions with something inanimate, the subject of the obsession may feel uncomfortable if they know they are the subject of such attention whereas Klingon grammar (or whatever floats your boat) simply doesn’t give a damn how often you think of it!

So what’s going on?

I can’t help but seek more of an explanation than it’s just an autism thing – autistic shit happens (this is probably related to my obsession with understanding all things autism!) Thinking about obsessions brings me to OCD. I’m no expert on OCD so I’m happy to be (kindly) corrected if anything I write about it is incorrect.

“OCD often goes undetected in persons with autism and Asperger syndrome. This is largely because of the difficulty of delineating the symptoms of OCD from those of autism, since rigid ritualistic behaviors form an integral part of autistic symptoms” (Ghaziuddin, 2005, p.160)

To my understanding the difference between OCD behaviour and autistic restricted/repetitive behaviour is that autistic stuff is enjoyable and the OCD stuff is something the person doesn’t want to do but is still compelled to. People obsessions definitely seem to often fall into the OCD category. I’m not saying there’s no pleasure in people obsessions, it can provide an escape from reality, it can provide comfort and control (if only imagined) in a confusing world, it can even be a useful tool for motivation – this person will think more of me if I work really hard… but too often the main product of it is misery and perceived rejection -why doesn’t that person feel the same way about me? This can feed into depression, particularly when combined with catastrophising – they didn’t reply, therefore I must be a terrible unlovable person, I should kill myself.

How are people obsessions perceived?

The research literature seems to focus in on stalking behaviour. Understandably stalking is a concern for the public and may lead to an autistic individual breaking the law. What little I know of autistic people coming into contact with the criminal justice system doesn’t fill me with optimism. Like any obsession it can be misunderstood and there’s many stories of an autistic person taking an obsession too far and breaking the law to get something they ‘needed’ for their obsession, here is an example https://en.wikipedia.org/wiki/Darius_McCollum

I feel that to some extent society sympathises with such people, I can even imagine NT friends describing such crimes as kinda cute *shudder*. When the obsession is with a person however I think the public perception immediately recoils in horror and mentally tags us with terms like ‘DANGEROUS!’, ‘PERVERT!’, ‘PSYCHO!’ To some extent this is understandable as we all fear what we don’t understand. I suspect research in this area is in danger of missing those of us who become (serially) obsessed with people but don’t act on it in ways which lead to being arrested.

How does it work?

I think if we are to support autistic people with obsessions with people we need to better understand this behaviour. So how does it work? I’d say it works in the same way as other obsessions. The subject of interest becomes all-encompassing and can take over every waking thought. From an early age, perhaps about aged 8, I’ve certainly had periods of my life where this was the case. I’d withdraw into a fantasy world involving that person and repeatedly replay scenarios where I somehow rescued them and gained their love. It seems clear to me that this is something of a coping tool, shutdown from reality is a great way to escape the demands of the NT world. In my mind I was in control of the situation and I could make the other person behave in any way I liked. I’d like to emphasise that obsessions with people can be sexual but they can also be more platonic, I don’t think sexual desire is a necessary ingredient here but some of the research suggests that this is a compensatory mechanism to fulfil sexual or social desires (Stokes, Newton & Kaur, 2007).

Mostly harmless?

Perhaps the key to whether an obsession is harmful to others is when the autistic is compelled to act on the obsession rather than just devote too much time to thinking about the person. Some actions like googling the hell out of someone until you’ve found every last online mention of them and know an unnerving amount about their namesakes is relatively harmless provided you have the skills to keep whatever you dig up about someone to yourself (I do feel everyone has some responsibility to be aware of what they leave lying around online for people like myself to find!) Similarly stalking their Twitter feed, Tumblr etc doesn’t usually create too many issues (other than further fuelling the obsession) provided you keep your thoughts to yourself.

Is honesty really always the best policy?

One conflict which many autistic folks seem to have trouble with is the idea of not sharing the full truth with someone being tantamount to lying. This is clearly an area where being open and honest about your feelings is dangerous, it can lead to all sorts of misinterpretations, destroy trust and friendship, even lead to criminal allegations. I’d say the autistic needs to try to see the bigger picture (easier said than done!) that often more harm than good comes out of revealing such feelings to people, particularly when they are huge emotions which can scare people.

How do we define what’s appropriate behaviour?

There’s a very fine line between appropriate social or romantic behaviour and inappropriate behaviours of this sort. I often find myself asking the people in my life to help me define the boundaries of relationships because I cannot always understand these social rules. My therapist gave me a useful tool by suggesting I ask myself whether a person was a friend or just friendly. I have a habit of misinterpreting friendly behaviour for friendship. As a child I considered my teachers my friends because I felt more able to communicate on their level than with my peers. I did not understand how my teacher could not really also be my friend. Obsession takes this problem a step further as we can read too much into friendly behaviour. I use to work as a carer for a guy with autism who wanted every carer to become his girlfriend, he didn’t see the problem with this or how uncomfortable it could make us. Similarly I’d often view a teacher being kind to me or complimenting my work as a sign that we were friends rather than friendly.

Impact on autistics

Despite the persistent myths that we don’t feel anything, autistic people are no more immune to heartbreak than anyone else and there’s a reason so much artistic expression is devoted to affairs of the heart. My experience and reading make me lean increasingly towards an Intense World Syndrome (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2518049/) understanding of autism although this does not (yet!) have much standing in academia. Something I think ties in really well with this reasoning is the concept of Intense Empathy – see @TheoriesofMinds ‘s storifies of conversations on this here: https://storify.com/theoriesofminds/autism-and-intense-empathy

Following that line of reasoning heartbreak is virtually guaranteed. I’ve been working with a young autistic child who recently inadvertently upset a classmate, the classmate swiftly got over it but the autistic child was devastated for hours that he had upset someone. To me this is a typically autistic experience. I would argue that as well as sensory differences we are also emotionally hypersensitive and that shutdown is often the result of emotional overload.

How to help?

So the big question raised by all of this is how on earth can you support an autistic person going through a people obsession? OCD is generally treated by SSRIs (anti-depressants) or CBT (Cognitive behavioural therapy). I imagine psychologists would look at the extent of the detrimental effect the obsession is having on the life of the individual and on that basis decide whether intervention is necessary (or rather whether the funding can be justified). For the majority of us however people obsessions do not reach the point of attempted suicide or arrest, many of us are aware of the consequences of obsessive actions and so we protect ourselves from these extreme outcomes. Yet that doesn’t mean there isn’t still a problem, the mental health implications of such obsession can be serious and long term, particularly where it often builds on other negative experiences. So what to do?

I think the key things people could do to help here centre around acceptance and safety. Society’s attitude to obsession is (understandably) one of fear. However if your autistic loved one is going to be obsessed by people, they’re going to be obsessed by people, no amount of telling them it’s wrong or silly is going to change that. When I am fixated, no matter aware I am that it is not healthy, I cannot prevent myself from thinking those thoughts, I’ve stopped even trying. So I think it comes down to keeping people safe and this isn’t necessarily limited to children and adolescents. We often crave clarity so some clear rules about what is acceptable and what is not can be really useful.

For the autistic person I’d definitely recommend connecting with other autistics who are going through/have been through similar experiences. I think the idiom ‘it takes one to know one’ has some value here and I think it’s incredibly difficult for a neurotypical to really understand these things. As with so many autistic things NTs often say “oh I get that” and in this instance I can imagine them saying “oh I had a terrible crush on that person” but so often it seems to me they don’t really understand the extent of feeling, the analogy I keep coming back to is what they feel as a wave we feel as a tsunami. Some things defy description but that doesn’t mean you shouldn’t respectfully listen if the autistic person want to (needs to!) talk about their special person.

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NT: “oh yeah, I get that all the time…” No, you don’t.

What is real anyway?

At risk of veering into other psychological conditions here I think it’s easy for obsession to drift away from reality. I’ve certainly been convinced that people have been utterly perfect in every way only to discover, to my cost, that they were far

from perfect except in my imagination. We know that autistics have difficulties in predicting the behaviour and motivations of others, so obsessions with people can lead to some dangerous places. We’ve talked a bit already about stalking behaviour but I think there’s also a link here with the reported association between autism and abusive relationships (I couldn’t find any research supporting this link but do let me know if you know of some). It’s clear how being so desperate for someone’s attention that you will do anything to please them, you will change to become whatever it seems that person wants, can lead to those subjects of obsession

abusing this. For me being obsessed with people did sometimes lead to a relationship and several decidedly unhealthy ones. Caught in the midst of obsession though it’s very difficult to see people for who they are and the reality very rarely matched my idealised fantasy of the person. Several people report cutting off friends and other interests as a result of a person obsession – here is an example https://aspiewriter.wordpress.com/2012/12/14/love-or-obsession-when-a-person-becomes-an-aspies-special-interest/

I am slowly learning that I need to look to the opinions of others regularly to check

whether what’s going on in my head calibrates with reality. After I finally ran away from my last ex, several friends who I had not been allowed contact with while in the relationship, revealed that she had scared them but they couldn’t tell me (and I would not have listened) as I was so very into her (admitting that now that I’ve seen the reality of what my life became makes me feel nauseated).

Love or obsession?

The other sort of people obsession is the unrequited love scenario. I don’t feel qualified to comment on the distinctions between obsession and love, I’m not sure I understand the difference. I do know that while in the grip of obsession it feels like what is described as love, in a very extreme – can’t eat, can’t sleep, can’t think – way. It feels very permanent, and the ability to imagine not feeling that way about the person is simply unfathomable. Experience has taught me however that in time (and sometimes this takes several years) I will move on from obsessions. This

causes all sorts of doubt around relationships though, if I cannot trust my feelings to be as permanent as they feel how can I ever build a future with someone?

What is very real is the in the moment experience. The consequences can be devastating even when they don’t involve breaking the law or being taken advantage of. Unrequited love is incredibly painful. To have your happiness and sense of self-worth depend on someone else is a horrid place to be. The person can become like a drug and despite the ecstasy of interacting with that person in the moment this can lead to withdrawal and severe depression afterwards.

Be kind

So I’ve written and rewritten and edited this post but ultimately I don’t have any great pearls of wisdom to resolve these issues. The best I can hope for is that by reading this it will encourage you to have more empathy for autistics coping with people obsessions. Be kind to us, don’t blame us for having feelings we can’t help, feeling this way can really suck.

Emotional self-acceptance vs the expectations of others

*contains the occasional swear word, deal with it or cock off.

I know, I know, it’s been an age since I blogged. Life has been shit busy and I haven’t had the time or energy to write the things buzzing round my head. I feel like I’m finally coming up for air now, like maybe one day soon my brain will be able to run at full capacity again. I hope that over the coming months I’ll have the mental freedom to write more here.

Something that’s been on my mind quite a bit recently is the way I feel compared to the way others believe I should feel. Mixed in with this is the problem of not necessarily ‘making the right face’ at the right time – see here for the brilliant Sarah Hendrickx being very funny, including an anecdote about this difficulty:

I started thinking about this a few weeks ago when it was my birthday. I don’t like birthdays much. In the days and weeks leading up to my birthday I was increasingly anxious that people would remember it and then proceed to ask me all sorts of difficult questions like how was I going to celebrate it. I had no idea how to answer such things, the honest answer of “I’m not celebrating, I’m having a typical day” (…now kindly fuck off and leave me alone) only provokes more unwanted attention. So I spent a lot of energy trying to come up with plausible ways to deflect such questions without causing offence.

The difficulty for me is that I have some idea of what people expect, I’ve lived long enough to know they expect these things but I feel like I can’t honestly fulfil their expectations. I’d rather not lie, particularly to people I like. The feeling that I was unable to meet these expectations added to my sense of “I must be in the wrong”. To some extent I seem to believe that if the majority of people believe I should act/think/feel a certain way then they must be right and therefore I am wrong. I have failed again to pass for neurotypical.

I had a similar experience yesterday. I received some good news, therefore by neurotypical logic I should be happy about that. Only it wasn’t really news for me. I’d been informed by people I trust that this would be the outcome if I met certain criteria. I met those criteria therefore the outcome was as predicted – so what? Surely it would only be a relief and joy if I were expecting the outcome to be negative and then was pleasantly surprised? I don’t really understand why others reacted with joy unless they were expecting me to fail?

I feel I need to separate out the overlaps of emotions here. It seems my pattern for any event which is big in my mind is to be anxious in the run up to it and depressed afterwards. I think the depression is partially to do with a sense of “now what?” after something that was a big deal has passed. I’d say that’s connected to difficulties with transitions as I have to then adjust my focus to a different goal. Also with any big deal there’s the exhaustion to take into account. Anything big involves an awful lot of anxiety, a lot of acting, a lot of painful self-analysis afterwards and considerable time to decompress and recover from. That process describes my experience of being autistic. So yesterday, having achieved this goal it’s no wonder that I was depressed afterwards.

This pattern is how I work. I’m not sure how much control I have over it, I may report back on this once I’ve done more CBT. In the meantime however it is just me, it is the way I am. The problem here is not necessarily that I’m depressed (I’m used to that!) but that I feel worse because I’m not meeting people’s expectations. My awareness of this perceived failing adds fuel to the fires of negativity – I can’t even be happy when I’m supposed to be happy…

Wait – supposed to be? Who the fuck has the right to tell me how to feel? And why would I listen to that? Emotion is personal and subjective. I don’t want to be conditioned to conform to societal norms. I have a right to feel any way my brain chooses, regardless of how that is seen by others. Again I’m trying to pass, I’m trying to be what others expect me to be. I’m reminded of the dichotomy around THAT dress, the key question for me is does it matter how you see it or how you expect me to see it? I understand that it makes sense for us to try to fit in with others socially. We all want to be accepted but I don’t feel like this is something I can achieve through pretending to be other than how I am because to try to do so only denies my reality. It pisses all over my feelings and tries to press them into a shape they are not designed for. My social experience is often like someone trying to squeeze into clothes several sizes too small. Why can’t people simply understand that my psychological anatomy is different to theirs?

To what extent does this reflect autistic experience as a whole? Trying to be what neurotypicals say we should be rather than accept who we are. I think this is another example of internalised ableism – see #autchat discussions on twitter for more on our experiences of this. (I promise I will get back to contributing to these one day soon).

The lesson I am learning – by no means am I there yet – is about self-acceptance. It’s been 3 months and 11 days since I was officially diagnosed as autistic so it’s still very early days for me, I am only at the start of this journey. I need to learn to accept that the way I feel has its own integral validity. I am allowed to feel that way regardless of others. I do not have to conform to expectations for fear of confusing people, being seen as odd or worse.

What can you do? I think the most helpful thing is if the people around me simply respect my right to feel how I feel, even when that’s a negative thing like depression, rather than telling me how I ‘should’ feel. I imagine this would be helpful in supporting many people whether they are autistic, have mental health difficulties or whatever their particular bag of unique features.

Be kind to yourselves folks.

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.

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.