Tag: Autism

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

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