Yes, I am disabled

I got a formal ASD diagnosis last year, several years after my second informal diagnosis. I had thought that getting that piece of paper would be validation of how I have experienced the world throughout my life. I’d begun the process of reframing my earlier experiences through the lens of neurodiversity and letting go of some of the shame I have been carrying about who I am. What I hadn’t expected was how big of an adjustment it’s been to wrap my head around the fact that I have a disability.

A disability is an impairment which reduces a person’s ability to do certain activities and interact with the world around them. No matter how hard I try (and believe me it’s a lot) I will never experience the world the way a neurotypical person does. Some of my autism related impairments can be worked around, but these work arounds have costs for me. Some of my impairments would be less of a problem if the world was set up in a way that worked better for me – for example accessible design in public spaces would reduce sensory impact on me – and society had more understanding of autism and acceptance of difference.

Recent MRI imaging studies have found that the brains of people with ASD have differences in anatomical structure, local neuronal circuitry and the function of brain regions. I couldn’t work out for quite some time why this upset me when I knew that autism was a difference in brain wiring. Tonight I was mulling this over again and I realised that while I thought I was “at peace” with being different, I had internalised the idea of neuroplasticity. Neuroplasticity is the brain’s ability to reorganise itself by forming new neural connections. It has been fundamental to the treatment of my depression and borderline personality disorder, as the psychological treatments I have worked my way through have been about creating new responses to trigger thoughts and events.

However, with autism, no amount of work on developing new neural pathways is going to make it go away. I am stuck with a brain which has developed differently and will continue to look and function differently to the majority of people.

In one way this releases me from the burden of searching for the right therapy to solve all my autism related problems. On the other hand, I’ve realised these differences will be with me forever and it is not something I just need to work harder to solve. I am disabled. No matter how hard I work

My senses will always be more finely tuned than yours
My hearing will work differently to yours
I will always have to work harder to process speech than you do
I will always struggle to stay organised and manage my day to day life
Transitions and change will always be a challenge
I will be prone to overstimulation, meltdown and shutdown
My ability to follow conversation is not going to improve
I will still spend much of my social interactions smiling and noding while hoping that isn’t an inappropriate response because I have no idea what is going on
Face blindness will continue to be a problem for me
Social rules will always be a mystery to me
I’ll always have to be prepared in case I become overloaded and non verbal
Almost nothing about the way neurotypical society works will ever be natural to me

I think I had always assumed that diagnosis meant being able to be “fixed”. This is the medical model of disability, where you figure out the problem, you “fix” the problem and the outcome is a normalised functioning member of existing society. Despite knowing that autism could not be fixed and would not go away, I had held the belief that somehow I would remain autistic and yet be fixed and function like a neurotypical person in a neurotypical society. I can see now how that doesn’t make any sense but I’ve been living my life with the knowledge of my diagnosis thinking that I just need to fix myself and all will be fine.

However, knowing that my brain is fundamentally different and accepting I am disabled means also acknowledging that I am not going to be “fixed”. This is who I am and because I can not fix myself, I need to ask society to remove the barriers that keep me from being part of it. It is ok to acknowledge who I am, to ask for understanding and acceptance, and to request the accommodations I need.

It is my hope this will also alleviate some of my depression. If I am prepared to acknowledge that many of my struggles are due to the ways in which I have coped with a society which expected me to adapt to it, then I can start letting go of the guilt and shame I have for failing in this. I was set up to fail, and that failure has taken a terrible toll on me. My mental illnesses are a product of this.

Ka Kite

Executive dysfunction: Part 1

Part of my ASD diagnosis is problems with executive function. Executive function is kind of hard to define but basically it’s the cognitive processes that help us regulate, control and manage our thoughts and actions. It includes planning, working memory, attention, problem solving, verbal reasoning, inhibition, cognitive flexibility, initiation of actions and monitoring of actions. People with executive function problems often have some areas which are worse than others, and the level of competency can vary from day to day depending on sensory and cognitive load from other things.

Executive function encompasses nearly every area of our lives. Work, managing a household, socialising, parenting, self care. So having executive function problems translates into problems with the tasks of daily living.

For me executive function looks like: I know the dishes need to be done. I want to do them. I want the kitchen to be clean and I don’t mind doing the task but I have trouble with task initiation. When I manage to stop what ever else I am doing and walk into the kitchen I notice the bench has a whole lot of things that don’t belong in the kitchen and some things need to be put away. I pick up Miss G’s hair ties and bobby pins from the bench and walk to the bathroom. I remember I haven’t brushed my teeth so I do that. I look out the window and think about what we are doing today and realise I need to put sunscreen on. I open the cupboard and it’s messy. I sort a few things and can’t find the sunscreen. I go off to ask G where it is and she doesn’t know either. The two of us look for the sunscreen and she finds wet togs. I take them to the laundry and decide to put washing on. While I’m there I notice there’s cardboard that needs to go in the recycling. I take that outside and notice the grass needs mowing. I open the shed to check on the petrol for the mower and there’s some seeds we were going to put in pots. I take out the seed packets and go inside to talk to G about planting the seeds….

Several hours can go past like this and not only have I not done the dishes but I didn’t find the sunscreen (usually that means I’ll have forgotten about it and we’ll go out, only for me to remember I was looking for it and never found it and neither of us have any on), or actually get anything achieved. The bench is still messy, the bathroom cupboard is still messy, the lawns aren’t done, I didn’t check on the petrol etc etc

This is incredibly frustrating for me. I have to put so much effort into focusing on one task at a time and holding that one task upper most in my mind. Not only do I have to ignore all the other things I come across that need doing, but I either need to write them down which often creates a massive overwhelming list, or be content with them not being done. Because the minute I walk away the chances of me forgetting the next thing to do are about 85%. And putting all the things on a list makes me so overwhelmed that I have trouble planning which task to do first and I feel overloaded by how much needs to be done and how much effort that takes.

Executive dysfunction for me can also look like:
– lack of awareness of one’s surroundings (it can get cold/dark and I will not notice if I am focused on doing something)
– easily distracted
– easily bored
– starting a lot of projects but never finishing them
– difficulty stopping one task and starting another
– difficulty changing routine
– forgetting verbal instructions
– losing objects frequently
– needing things repeated frequently
– interrupting others
– impulsive behaviour
– difficulty controling emotions
– easily frustrated and overwhelmed
– difficulty with planning and problem solving
– disorganisation
– poor time management
– procrastination
(credit to Lilo the Austistic Queer for a series of tweets this list is based on)

Miss G (who also has an ASD diagnosis) has executive dysfunction as well. We have slightly different areas where we are better or worse but both of us are terrible with organisation and planning. With school stuff this might look like her leaving notices at school, or her forgetting to give me school notices, me forgetting to ask or check her bag, me receiving them and then losing them, or forgetting to fill them out, pay and or send them back with her, her forgetting to take the notice back, or give me any reminders. And that’s only school notices!

Even this morning’s post is a perfect example of my poor executive function skills. I got up early to put washing on and do housework before being picked up by a friend. I put the washing on and got in the shower. In the shower I started thinking about executive dysfunction and when I got out I looked for two facebook posts I’d seen previously about it. I sat down and started writing. The washing finished but I haven’t got up to hang it out and put the next lot in. Nor have I stopped to eat breakfast (and it’s now 2 hours since I got up). I have been hyper focusing on executive function and writing for over an hour. My friend will be here soon and I’m not ready, nor have I done any of the housework I planned to do. This is what happens to me on a regular basis.

My life is chaotic. Partly because I am a solo parent who works full time, who happens to have both a developmental diagnosis and two mental illnesses, with a child who has multiple diagnoses. Partly because I struggle with executive function as part of my ASD diagnosis which means I am often forgetful, disorganised, and struggle with daily tasks. And partly because I am one of those people who if something can go wrong it will happen to me. I just don’t seem to be able to keep a handle on everything that’s happening in my life. This makes the tasks of daily living a real challenge for me, and I live in a near constant state of overwhelm, meaning the next little thing that happens can push me into full ASD/BPD meltdown.

I have more to say on this topic but I’ve run out of coherent thought so until next time.

Ka Kite

Autism and context blindness

I was listening to a speaker session today as part of the Autism Explained Summit where Dr Peter Vermeulen and Paul Micallef discuss Autism and context blindness, and suddenly I had a lightbulb moment. Context is often what is missing for me, and causes so many misunderstandings in my life. And because I can’t read between the lines and pick up context I have a tendency to go too far back and give too much history when I’m trying to explain something. I’ve had people tell me they don’t want the entire history of what happened, just the bits that are relevant (more than once) and thought “but it’s all relevant!”.

Dr Vermeulen theorises that autism is a form of blindness – context blindness. That autistic brains either have reduced ability to use context spontaneously to give meaning to ambiguous and abstract stimuli, and/or that autistic brains see context but for some reason don’t or can’t use it.

Context is important as it helps us find the right meaning of a stimuli. In the speaker session he uses the example of a red traffic light which is usually thought of as an absolute. And normally red would mean stop. But what about when the green crossing man light turns red as you are crossing the road? In that context red means hurry up and finish crossing the road. Or what if you are with someone who starts crying? Without context you would be unable to tell if that person is crying from laughter, is sad, is having an allergic reaction to something or has been cutting onions.

One of the other things that was discussed was context blindness in relation to late diagnosed adults. Dr Vermeulen talked about how some autistic people study neurotypicals and human behaviour on an intellectual level and make scripts for and then apply that script. Until he said this I didn’t realise that was a neurodiverse thing I do all the time. I read widely on all sorts of subjects and one thing I am fascinated by is psychology and human behaviour. I listen to a lot of podcasts about people’s real life experiences and I watch all sorts of documentaries that focus on people – be that historical figures or people with disabilities or who have done extraordinary things or who are in all sorts of situations. If I know I’m going to face a situation I’m not familiar with I’ll research and read all about other people’s experiences. If I have to make a phone call for something I haven’t done before I will actually write a physical script. For work phone calls I have a standard introduction piece I say before whatever I’ve scripted for the call. I actually have what I need to say when I pick up the phone at work on a post-it note next to the phone, despite having been there for more than a year. I’ve also studied how to make small talk and network with people, and earlier in my career I wrote down lines I could say in the lift and the lunchroom to people I worked with.

But where this strategy comes apart is when I’m not in control. If something happens and I have to be flexible and do something or go somewhere and I haven’t had a chance to research and think and script then I tend to panic and be tongue tied and I often misunderstand what is being said or what is expected of me.

One of the other things that has puzzled me this year is my result on the facial expression recognition test which I took as part of my autism diagnostic testing. I have studied faces and emotions – like I said above I have done lots of reading and tried to teach myself social skills, body language and what different expressions mean. I knew I was awkward in conversation and I wanted to improve that and be able to fit in. I’m also an artist who almost exclusively draws and paints the human face because I feel drawn to it so strongly. But my almost perfect result on that test still took me by surprise. This test is considered an important marker for autism. And all of my other tests were pointing very definitely to an autism diagnosis, except this one. I also couldn’t work out how I can recognise expression in photos but still struggle so much with working out what someone is feeling in real life.

What I’ve realised since I listened to this talk is that what I can do is sit with photos in front of me and apply my intellect and learning to figure out what the expression is or what it means. What I have trouble with is applying that learning to the context and combining that with body language and the words/conversation and then deducing meaning. I also find it uncomfortable to make eye contact and though I’ve trained myself to get better at it that takes a lot of mental effort as I must remind myself to look at the person, then look away at appropriate intervals (I’ve learnt staring is just as bad as no eye contact!). In person I often make a conscious effort to try and read body language and deduce it’s meaning and in client meetings I will sometimes deliberately mirror the other person to try and create rapport as I know verbally I can be awkward. There is a lot of mental effort going on when I am meeting with and talking to someone else so no wonder it’s easy to miss or misunderstand facial expressions and what they might mean in that specific situation. Another example of how testing is an imperfect science.

One of the things that is mentioned a lot for autistic children is the important of learning social skills. I have attended training and had support services help me develop my child’s social skills. And I have learnt a lot from all this training as well as hopefully passing a lot on to Miss G. But if you asked me what an appropriate gift is if you stay at someone’s house, or how long you should stay if you are invited for coffee or who provides the food if you are invited to someone’s house for lunch then I’d have no idea. Because almost none of what I have learnt includes context and I’m unable to deduce it for myself. I would normally google these questions but if I was caught off guard or forgot that I didn’t know the appropriate behavior until I was in the situation then I would more than likely be headed for overload or meltdown.

Imagine a world where many times a day you don’t understand what people are saying to you (as you can’t pick up context) and you often end up in situations where you are unsure of what is expected of you. You script basic conversations but anything you haven’t anticipated leaves you scrambling to follow the conversation and adapt to make yourself understood. Where at best people think you are aloof or strange (lack of eye contact and small talk, odd out of context behavior) and at worst you annoy and upset people and are interpreted as rude. Add in sensory processing disorder and auditory processing issues as further barriers to following, understanding, interpreting and communicating. This is my reality as a “high-functioning” autistic and it can be exhausting.

It feels like I still have a lot to explore on this topic. I haven’t even covered how context blindness creates anxiety, or what I was going to write about today on ASD and dealing with uncertainty. I also wonder how much sensory processing issues and sensory overload contribute to context blindness and maybe block the subconscious from interpreting stimuli. But enough for tonight.

ngā mihi

How I cope

People who know me and my diagnoses sometimes comment on how well I seem to cope. Or compare me to some other person who is struggling and say how good I must be or how bad the other person is because I look like I am doing so well. If I have chosen to disclose one or all of my diagnoses to people who know me less well I often hear how you’d never be able to tell how much I struggle or how hard I find life or that I have even one mental illness never mind two and autism. That you’d never know that I’m on meds to stabilise my mood and for my depression and I see a psychologist once a week and have done for years.

I work full time. I am a solo parent to my autistic daughter who also has several other diagnoses. I create and exercise a bit and socialise a wee bit. I volunteer where I can at the school and take my daughter to activities. I generally mostly keep up with my life, pay the bills and do the housework and spend time with loved ones. This is what people see. What they don’t see is what it takes to keep things going.

One thing people might be surprised by is that almost every day after work, I pick up my daughter, go home and put on my cosiest most comfortable clothes and get into bed. I usually stay there for anywhere between half an hour and several hours before I can continue with the evening.

Having both a neurological difference like ASD and a severe mental illness like BPD means that getting through each day can be exhausting for me. All day I have coped with sensory input that is often well beyond my comfort zone. I’ve had to be flexible to changes in plans and fit in with the way neurotypicals like to do things. I’ve tried to watch other people’s body language and work out what they are saying while not saying it. I’ve remembered social rules and made the effort to keep my “normal mask” well in place. Often I’ve needed to call upon some or all of my strategies to cope with my emotions. But the effort of doing these things and the toll they take on me is significant. When you add on a high needs child and the fact that I’m a solo parent it’s understandable why I feel the amount of overwhelm I do on a daily basis.

So I do what I need to do to restore myself after the work day. In the winter that means wrapping up in my coral fleece blankets and laying on my bed. Sometimes in silence just looking out the window, sometimes listening to music or a podcast. Usually I have a fidget or a piece of fleece that I rub on my face.In summer I’m usually face down on my bed (extra pressure on the front of my body – mimics the feeling of being wrapped) with the fan blowing on me. The sensory soothing helps me cope with each day.

I worry that my daughter is missing out, on time with me and time being supervised by me (she doesn’t get a lot of homework done). I worry that we don’t eat healthily enough because I am in bed instead of cooking healthy dinners. I worry about whether this is a sustainable way of coping with life, and whether this indicates I should be trying to live a life that doesn’t take such a heavy toll on me.

I am trying to take life one day at a time and just do what gets me through. But the old fear that I am not trying hard enough, doing well enough, is still nibbling at the edges. I feel like things are so finely balanced it only takes one extra thing to tip me into overwhelm. This is where depression can sometimes get a foothold too. If it’s been a bad week and I’ve needed a lot of recovery time depression tells me how hopeless I am. How this coping strategy is really laziness and letting my daughter down. Depression tells me I am not trying hard enough and that I should be able to get through the day without retreating for downtime. I need to keep reminding myself that depression is not my friend and it tells me lies. It has its own agenda. Sometimes life is minute by minute what gets us through and that is good enough.

Stay safe and warm friends. Ka Kite

Sound/auditory processing and ASD Part 3

This is a follow on from Parts 1 and 2, in which I mentioned a conversation Miss G and I had about auditory processing disorder and the different ways in which sound affects us.

Often these conversations arise at the end of the day when Miss G is in bed and I’m tucking her in for the night. Things that have come up for her during the day or week tend to come out, and with Miss G it’s a matter of teasing out the information on what has happened. She lacks theory of mind so often starts an explanation in the middle, or assumes I know things, or refers to things I have no idea about. This involves lots of me checking facts and interpretation and repeating them back to her (scaffolding her story).

Sometimes I say the wrong thing but I don’t know why. Or she tells me things and then I feel helpless because I went through the same thing and I still don’t know the right answer. Something I’ve started doing recently is asking if she wants me to help her with a solution or just listen to her. I seem to put my foot in it less if I ask this rather than assuming she wants my help.

When she does want my help I use my own experiences to try and help her think of solutions to her own auditory issues, and to understand what is an acceptable accommodation and what is not. Asking the teacher to repeat the instructions slowly directly to you is ok. Bugging your neighbour about what to do next because you didn’t hear the instructions is not. Sitting at the front of the class so you can give yourself the best chance to hear is great, sitting at the back because you can’t see the point in trying to hear anyway is not. Talking to the teacher at the end of each day when problems arise (as previously arranged) is an acceptable way of working through interpersonal problems with classmates. Sitting in the sensory room is a great way of calming down and re-framing things, staying there for an hour or more and not participating in classroom activities is a problem.

I must admit sometimes I do find this tiring. Often situations must be teased apart so I can understand what the issue is, then I need to check if she wants me to help her solve it or just listen. Then discuss ideas for solutions with her, and sometimes then follow up by going to the school and supporting her while she discusses with the teacher. I try and encourage her to discuss with the teacher as first port of call, as I want her to be able to advocate for herself, but sometimes this involves another decision as to whether that’s appropriate in that instance.

It can be very hard work, and it’s often constant as we can be discussing some new issue (or continuations of old issues) every night. I don’t know how other people parent, and I know that we are in a different situation to most as there is only one parent and one child, but this sometimes feels like a heavy weight for me. Sometimes I am bad tempered and have no patience and then I feel terrible. I want my child to come to me and discuss these things with me. And I know that we are certainly closer for it. I love Miss G with all my heart but sometimes I wish we had an easier time of it. I’m sure she wishes she had an easier parent sometimes!!

Ka Kite and Arohanui

Sound/auditory processing and ASD Part 2

My own auditory issues are more around not being able to tune out all the background sound and focus on what’s being said. So when we were having that conversation I needed to turn the radio off and look at her. I don’t do eye contact necessarily (it’s distracting) but in some situations I look at the person to help me focus. Our house does not have the radio going in the background unless I am listening to it (breakfast time usually), and we don’t have the TV on during the day. I can’t focus or function with too much noise.

In a noisy environment I may see people’s mouths moving but not hear anything they say, or catch words but not be able to interpret conversation, or not be able to respond because I can’t form thoughts in a coherent way. Sometimes this might look like selective mutism especially in meetings, restaurants or large groups of people but it’s just because I can’t process when there’s more than one conversation at a time and/or there is background noise. Particularly in restaurants and cafes where there is often music and a hum of conversation, plus cutlery/crockery rattling etc This means I may miss some or all of the conversation or I may hear and want to respond but not be able to focus on forming my thoughts and then speaking them.

Miss G knows that when she wants to talk to me that closer is better and there needs to be very little background noise if possible. This doesn’t mean she remembers very often until I remind her though!

The world is not set up for people like us, and even when others know you have labels they do not walk in your shoes so don’t always understand or anticipate the problems you face. You can’t yell “quiet” in a work environment because you have a piece of work you can’t concentrate on with too much noise. You can’t request people have morning tea or lunch in small groups so you can join in the conversation, or even hear it. You can’t tell people to stop opening and closing doors because the noise bothers you. You can’t tell the mowing contractor for the office that he should only work when you don’t have to be there because you can’t stand the sound of the weedeater and leaf blower as they cause you physical pain. But you can understand why you feel upset or angry when these things happen, and bring ear plugs or head phones, or go for a walk when the weedeater comes out.

Sound/auditory processing and ASD Part 1

Miss G (age 10) and I were having a conversation the other night. She was talking about how she has what she calls “short term memory loss”. She likens herself to Dory (from Finding Nemo) who hears what people say but forgets it seconds later, and she tells people at school that to help them understand her. She was telling me her memory is terrible and she can’t follow instructions, and was giving me examples of this. Teachers and other kids at school are always mentioning that she is not listening and giving her a hard time when she has to repeatedly check instructions. I gently reminded her that she doesn’t have a memory loss problem, that she actually has auditory processing disorder. This is where the signals from her ears to her brain get scrambled and the message takes longer to get processed. She burst into tears.

She was crying because she had told people she has short term memory loss and she really doesn’t and she was worried because she “had lied to them”. We discussed this for a while. Sometimes telling people something that isn’t quite true but that is easier for them to understand is ok. While there’s nothing much wrong with her memory (her short term isn’t as good as her long term but there’s only a little lag) it’s easier for people to understand and relate to this than for her to try and explain auditory processing disorder to people. Explaining that there is nothing wrong with her hearing but the processing gets muddled to the other 10 and 11 year olds in her class could be tricky. I can imagine them interpreting it like she did – either she has a hearing problem (she doesn’t) or an understanding problem (she doesn’t).

My take on this is that it’s ok to say she’s like Dory – Dory is someone most of these kids will have seen in the movies and will have seen she’s still a character with a lot to give who just requires a bit of extra patience. Nemo helps Dory without treating her like she can’t do things and he sees the good in her. Maybe later on she can tell people what auditory processing disorder is, but for now if Dory is who she relates to then that’s ok.

So during our conversation we talked about my auditory difficulties (see Part 2) and hers. Different problems but same end result – we don’t hear what is being said to us. I am trying very much to use the labels we have to explain the issues we face without encouraging a ‘poor me’ attitude. And that’s a very fine line. Some days Miss G is very upset and feels misunderstood, particularly when things happen at school that she has inadvertently caused or contributed to. I remember what that was like at school and these are issues I still encounter now.

Trying to help her understand what is going on, not just with her auditory processing but also her autism and her muscular issues (hyperflexibility/low tone), can be really challenging. Almost every day seems to bring a new challenge, whether sensorially, socially or physically. And many of these challenges force me to examine who I am and how I interpret the world. Often I find myself realising that I haven’t dealt with issues in the most ideal way or gaining a new piece of understanding as to why something happened to me or someone else reacted in a certain way. I often don’t have the answers, I often put my foot in it, but I am trying. I have hope that will be enough as I have nothing else to give.

Ka Kite

Gender confusion

As I have mentioned on previous posts, I am currently going through the diagnostic process to confirm my ASD diagnosis. This involves a lot of examining who I am, how I respond to certain things, my thinking patterns, my sensory sensitivities and developmental history among other things. One of the questionnaires I have filled out as part of the diagnostic process is the GQ-ASC which is the girls questionnaire for autism spectrum conditions and has two slightly different variations – one for Girls 5-12 years and one for Girls 13-19 years. I completed both, and my parents completed both, and all four were given back to my psychologist.

The GQ-ASC is a new tool and was only published in February 2018. It’s still in pilot stage, but my psychologist wanted to use it in conjunction with the other screening tools to provide further information for my overall assessment. There’s some info about it and a link to the questionnaires here. It was an interesting exercise for me to fill it out, and it really made me think about what I was like as a child and a teenager. I often think I have very little memory of my childhood but what I’ve recently discovered is that I have little snapshots of memory – sometimes just thoughts or feelings, or a flash of a situation. These are often out of context. I may remember how I felt or what I was worried about but not why, or what else was happening (outside of what was in my head) at the time.

There were questions on whether you preferred to play with girls or boy’s toys as a child, and whether you preferred to play with girls or boys. I didn’t like girls toys or clothes, although I did like soft toys (stuffed animals/plush toys) and I had quite a few of them. I much preferred playing with cars, though outside activities were more my thing as far as I can remember – sport, tag, playground equipment, skateboards/rollerblades, swimming, climbing trees and riding bikes. If I was indoors I was often reading a book. But both my best friends were boys and I wasn’t interested in most of the traditional girls things, like dancing and dolls.

I do distinctly remember thinking about wanting to be a boy though, and questioning whether I would fit in better if I was a boy and whether people would like me better. I preferred boys clothes and many of my clothes, especially from mid childhood to mid/late teens) were actually purchased from a menswear shop. I wore sweat pants, jeans or shorts, a t-shirt and a sweat shirt or hoodie. No makeup, no nail polish, no jewelry, except for a watch. I did get my ears pierced at age 11 but the only time I’ve ever changed my earrings is when one fell out and I was forced to buy new ones (the same as the ones I already had!).

I don’t like makeup, as I can often smell it and the smell drives me crazy and I can feel it sitting on my skin. Lipstick is awful as I feel like I am super tuned in to the feeling of it being on my lips. I have the same problem with nail polish, though in the last year I have discovered that I can stand one layer of polish on my fingers for a few days if I have to (I have a 10 year old daughter who loves to do nails).

From about the age of 8 I thought about being a boy. I remember wishing to be a boy but I wasn’t aware of trans people at that stage so I didn’t think it would ever happen. I read about Joan of Arc and people like her, wearing men’s clothes and doing things like leading men into battle, and I wanted to be like her. At other times though I was quite happy to be a girl. I never really developed boobs so that wasn’t an issue for me, and I was mostly allowed to wear the clothes I wanted to wear and play with who I wanted to and do what I wanted to, so it wasn’t a day to day issue. My main problem was having to wear a skirt as school uniform, though I was lucky enough to be able to wear pants in winter for a lot of my school career. I remember feeling fortunate that I had not been born 50 or more years earlier, when my preferences would have been more of an issue.

When I was 11 and in my first year of intermediate I developed my first crush on a girl. I don’t think I was really aware of lesbians at that stage (this being the early 90’s) and I was really confused because I was still sometimes thinking I wanted to be a boy. I felt sick to my stomach whenever I saw her because I was so confused about how I felt, but I still kept seeking her out. She didn’t know I existed though and I don’t think I ever introduced myself. The following year I had moved on to a boy, not that I ever let him know about that either!

Over the years I have had crushes on both girls and boys, but the girl ones tend to make me feel guilty and sick to my stomach. I don’t know why as I wasn’t exposed to prejudices against gay people as I grew up, and one of the boys I was best friends with as a child is gay. I don’t have a problem with it. I think the sick feeling is confusion and uncertainty about who I am rather than feeling like there is something wrong with me.

One of the only times I have ever been certain about my ‘womaness’ is when I became a mother. The experience of being pregnant taught me that I could feel comfortable in being a woman and still keep the parts of me that dress in shorts and t-shirts, that don’t wear makeup or shop or drink wine or want to wear high heels. It’s like being a mother proved to me that I could do the ultimate ‘womanly’ thing and create life, even though I have failed to conform to all the other sterotypes of what a woman is.

In the last few years I have done a lot of reading about gender and sexuality, and how these things seem to exist on a continuum, and especially sexuality seems to be influenced by hormones released by the mother when she is pregnant. I think I have finally got to a place where I am happy to be the ‘tom-boy’ girl, rather than wanting to be an actual boy/man. And I can accept that what I feel about my gender is separate from whatever my sexuality might be. And that I don’t have to label my sexuality or make a decision about it. Its enough to just accept that I don’t know at this stage and that may or may not change during my lifetime. My aim is just to be open to whatever happens rather than trying to analyse it. There’s an article about this here which explains better than I could why sexual fluidity is different to being bisexual and what it means. Some food for thought.

Ka Kite

Diagnostic process

I have been feeling like I need to write for the last week or two but I have been putting it off because I have been unable to sort through the tangle of thoughts that are in my head. My mind feels like it is cluttered with so much going on but it can’t focus on any one thing. Part of that is going back to work after my injury, but part is also going through the diagnostic process for ASD and what that means in relation to my past and my future, and who I am as a person.

At the beginning of December I had an accident where I fell off some rocks (boulder) while holding a child, straight on to another large boulder. My leg got trapped in the space between the two large boulders and I hit my buttock and lower back directly on the rock surface without breaking my fall as I didn’t let go of the child I was holding. Unfortunately this accident led to a sprained ankle and knee, a severe hematoma stretching from lower back to upper thigh, various bruises and scrapes and a fractured spine. I spent three weeks in bed, including all through Christmas, and only went back to work on reduced hours after 12 weeks. I am four weeks in to my back to work plan now, with another week to go. Then I should be cleared for full time work again. I’m still in some pain, and still find sitting uncomfortable, but I had a cortisone injection in my spine earlier this week which seems to have helped.

All this time off, particularly the enforced bed rest, has given me a lot of time to think and reflect, to learn (mostly through pod casts as it was hard to lie in certain positions to read or watch TV) and to question. My psychologist and I had talked about ASD diagnosis for me in the past, but I had dismissed it for several reasons. I was scared that I would not get a diagnosis and the part of me that identifies with the autistic community would be squashed again. I was scared of digging in to my background, analyzing my personality and family relationships, examining who I am. I know this is what I am doing in therapy anyway, but the diagnostic process is a more intense look, particularly at childhood and particularly at what other people’s impressions of your development were. I didn’t want my fledgling identity destroyed by other people’s ideas of who I am. I have worked hard to try and figure out who I am and I felt the skeleton I had begun to flesh out might be crushed.

However….the more I thought and learned about personal identities of all types, psychological and neurobiological theory, history – world history as well as biography of all types of people, the more I wondered about who I am and what my personal history meant. I wanted to know. I wanted confirmation, almost permission, to view myself through the lense of autism. To reframe experiences and experience ‘ah-ha’ moments – that’s why that happened and that’s why I do that. I wanted to find my community and not feel so alone anymore.

And so the diagnostic progress began. Luckily I still had almost all of my old school reports and my Plunket book (Plunket book = child development record book) which my mum filled out until I was 9 or 10 plus a couple of sporadic updates. So those went to my psychologist. Then questionaires for me – AQ and EQ which I’d done before – and RAADS-R plus the PAI, MCMI-III and TSI-2. Some of these are aimed at autism diagnosis, some at personality, trauma or clinical syndromes. My parents then filled out the RQ and we both filled out some questionaires aimed at diagnosis of females with autism. All of the results so far have showed that I am well over the threshold for diagnosis with ASD.

Then it was on to the WAIS-IV which measures cognitive ability in specific domains of intelligence. This showed my areas of strength to be vocabulary, arithmetic, and general knowledge, and my main area of weakness to be digit span, followed by letter-number sequencing. From what I can gather this means my knowledge, verbal comprehension and expression are good, but my working memory, auditory processing and attention are not so good. Interestingly enough, apart from arithmetic, my strengths and weaknesses are the same as Little G’s.

Because this process has taken place over a series of weeks, and is not over yet (more information gathering, plus a developmental history appointment with my parents next week, I have been feeling rather worked up about whether I was going to receive a diagnosis and what all the test results were saying. Last week I was getting agitated towards the end of my session with my psychologist and he asked me why. I explained I was nervous about the testing and felt on edge, he said for him the ASD diagnosis was never in question, it was just that we needed to go through the process and gather all the evidence to support it. The relief that simple sentence gave me was unbelievable. But also ….there was a sadness I hadn’t expected.

In the week or so since I have been doing a lot of thinking and re framing. I feel a little sad and sometimes a lot sad. Sometimes I feel like it explains all my weirdness and I can be free to be myself. But sometimes I just feel lonely and bereft and like nothing will ever get better because how can it when my brain wiring is what makes me different.

In my last session with my psychologist he gave me some further feedback from the MCMI-lll. The picture it paints is not pretty. Depressive, anxious, avoidant, aloof (schzoid), negativistic (passive-agressive), self defeating (masochistic) and extreme (borderline). Patterns of behavior I have adopted to make sense of my world and my experiences. Things I do or ways I act due to some of the things that have happened to me. These also make me feel very sad, and very defeated by life. But I understand more now about why I feel the way I do – ASD and sensory issues, plus what looks to me like some attachment problems, causing maladaptive behavioural patterns. I’ll admit, there are more maladaptive behaviours than I had imagined, and they confirm my picture of myself as someone damaged, broken, unworthy. But I guess knowing is the first step to improving my psychological state, and accepting myself as someone with autism. And in some ways it feels like validation for the shit that goes on in my head and my struggle to cope with “normal” life.

It feels like I am a long way from a place of peace but at least I can see there is a road now.

Ka Kite

Communication

I’ve been thinking a lot recently about social media and social contact in general. I give myself quite a hard time as I don’t respond to messages or initiate contact much. I can see I have an email/facebook post/message/text etc but I often avoid reading them or responding. Even when I really care about the other person. And I am hopeless at initiating contact. I exist in my own little world quite happily. It’s not that I don’t like other people or want friends, or that I don’t care, it’s just that I find socialness really hard. Other people’s emotions affect me, conversations and thinking about how to respond are hard work, and I am a real introvert, probably bordering on anti-social.

I also have a really hard time picturing people’s faces and remembering what they look like. I suspect this is related to my ASD tendency to avoid eye contact. I often look past people or in their general direction rather than at them. And because I can’t see much out of my left eye, if they sit on that side of me all I get is a general impression of them anyway unless I turn my head so my right eye sees them. But even remembering my own family, my daughter, my parents etc is hard for me. I know people’s hair colours, and I can usually pick if they’ve had a haircut. But facial features are hard for me to pull together in my head. My memory of people is usually with blank faces, sometimes with hair. General colours are there, but I can’t picture certain features. And interpreting faces and expressions is not my strong point at all. There’s some new research being done around this and the role of what’s called the fusiform face area in recognising and remembering faces. This article and this article are particularly interesting.

When I was a teenager, my dream when I grew up was to be a hermit. Preferably living on a remote property in the Coromandel where I wouldn’t have to see anyone and I was a long way from anything except a good beach so I could surf as much as I wanted. I had no desire to have anything except peace and quiet. I still have that dream, though owning a piece of property on the Coromandel anywhere near a beach is probably way above my pay grade!

I carry a lot of guilt about not responding to people and messages. Right now I am avoiding responding to two text messages, two Messenger messages, a Linkedin message and at least one email. And that’s just social stuff from the last two days. There’s other messages I haven’t responded to from weeks back. I’m also avoiding cancelling an appointment, emailing G’s teacher, emailing an invoice (that one is a must do, I want to be paid!), emailing a potential client, making a doctors appointment…. the list goes on and on. The social messages are important to me, and they are all from people I like and care about. But I have a lot of trouble thinking of how to respond. Some of them want commitments from me, like making a time to catch up. Others just require a response to a comment or question. And the general household stuff just needs doing! But communication is often beyond me.

I think that would surprise a lot of people that know me. It’s probably no secret that I am slow to respond to messages, but I feel like my level of procrastination is higher than most of my friends would guess. Maybe not my family though, they know how crap I am at communication!

One of the things that they expect you to be able to do when you are a psychiatric outpatient is talk to people and ask for help. I however am an expert at avoiding phone calls at all costs. I find it incredibly difficult even when I am not in distress to pick up the phone and ask anyone anything. Add mental distress to that and I am almost a lost cause. Because of that, when I am unwell I don’t get the support I need from my case worker and that often makes me frustrated and angry. I don’t know how to communicate in a way that will achieve what I need. If I can force myself to ring I never manage to put across what I am feeling, despite rehearsing what I could say in my head dozens of times, sometimes for days before I work up the courage to pick up the phone.

Compounding my distress, often when I am mentally unwell my ability to put words together in a way that makes sense is often diminished. Sometimes my speech is really fast, or really slow and hesitant. Sometimes I stutter and stumble over words. Sometimes I get them mixed up and say day when I mean night, or yesterday when I mean tomorrow. Or I can’t remember the words at all. Sitting there, knowing what you want to say but being unable to find the words to communicate so that you are understood, is really difficult.

When you have BPD and you get frustrated or angry the emotions often come on suddenly, and very strongly. I can go from upset to intolerably angry in about 2 seconds flat, and that will make me do things I regret later. I have shouted at various mental health professionals, been rude and snarky to people, become mute when things haven’t gone my way, point blank refused to do certain things asked of me, argued with people, stormed out of meetings, been fired as a patient by a psychologist and 2 psychiatrists, and generally thrown temper tantrums. I am not an easy patient to deal with and I’m not proud of that. All of these things are tied up in my inability to communicate with people, and my extreme sensitivity to anything that could be perceived as an insult or criticism. And once I am angry I tend to give in the the fury and it takes a while to come down from that.

I think my social behavior, my difficulty in communicating and my inability to remember faces or read them very well are all tied in to ASD. My current theory is that my ASD produced many situations that I did not have the ability to cope with and caused me confusion and overwhelm. I didn’t have a diagnosis, didn’t understand why I was different and thought there must be major flaws in my personality. On top of that I was overwhelmed and confused much of the time. This, along with some less than ideal circumstances and trauma in my childhood and teens, caused me to develop dysfunctional coping skills which in tern has led to BPD. I also wonder whether the fact that I strongly believed my personality was flawed led me to try and suppress it or get rid of it, leading to the unstable sense of self that is so central to a BPD diagnosis.

I am not sure why it matters to me how I have ended up with the conditions I have. On reflection tonight I feel like if I can somehow find the connection between all of these things, these odd bits of me, then I can get a handle on “how to be me”. Like trying to unravel a complex knot, where you feel like if you can loosen it enough you’ll be able to find the end of the string and it will all just fall undone. I think I have this hope that one day that will happen and I will magically just know how to cope with my life.