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

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