What it’s like being Autistic: Courage and Autism – a walk through fear towards hope
Autism explained – it may not be as you think…
I would like to take you on a journey with me, through a day in the life of someone on the Autistic Spectrum. That person is me! I will start by giving you some context and background information on Autism as a whole, and specifically how it manifests itself for me. You will be taking a walk in my shoes, although not actually wearing my shoes, because they may not fit you, and it may not be hygienic to wear each others shoes. I have learned that this phrase is a metaphor, and that the shoes represent my life as it is lived and experienced, and not some strange shoe swapping ritual in the literal sense. Metaphors, idioms and sarcasm is sometimes difficult to work out. And there is your first insight into Autism…
True or False
Autism Is a spectrum from low functioning to high functioning. Low functioning Autism often goes hand in hand with learning difficulties and impaired cognitive function. It is certainly easy to see this as a disability – and there will often be considerable care given throughout life into adulthood. High functioning Autism often goes hand in hand with high intelligence, augmented memory and clarity of thought. The bits that seem to be missing are the social cues and the ability to understand why there is so much conversation and so many questions that don’t seem to have a purpose. Asking a question to gain knowledge is understandable. Asking a question because you are supposed to ask a question makes no sense – especially if you are not interested in the answer. What this means is lots of anxiety being around people where there is no context to the situation. An example below:
Why Social Interaction is so scary…
If I am running a training session as a trainer – the context is set. I am the teacher and you are the student. I will know the subject matter and questions will relate to this. This places me inside my comfort zone and I can display all of the normal signs of being interactive and appearing to be social. If I go to a restaurant, I can engage with the service staff about the menu, the food and questions will relate to the food. There are some codes that I have learned relating to the weather, holidays and general questions that will repeat within this context. I have pre-prepared answers. Now put me into an open social forum where there is no context and no rules… This is where I struggle. There is no way of knowing which direction people will come from, what they may ask, whether or not they will touch you and so on… The result is considerable anxiety and ultimately withdrawal. I will be terrified the entire time! All of the above is true for me.
Now for something false: Autistic people don’t have empathy
I know how you feel and can empathise with that opinion (Autistic joke)
Much damage has been done with the attachment to the theory that people on the spectrum have no theory of mind and linked to this a lack of empathy! This is not true. When you are in a state of fight, flight or freeze caused by more often than not feeling incredibly anxious – you may withdraw and take on the appearance of being self-centred, but in reality you are in a state of self-preservation rather than selfishness. The other thing is that we feel a huge amount of empathy –maybe even too much. For me I can see a homeless person and I’ll be thinking about them and their predicament for days. It affects me and can spiral me into a very negative place. When I see someone crying I want to move away from them because I feel their pain deeply – not because I don’t! Many people on the spectrum have a fierce sense of social justice and loyalty, and these are born of empathy. I have difficulty showing you the display of these feelings, but perhaps the display of these things is to showcase what others want to see rather than what we really feel. I have no interest in showcasing anything. Showcasing brings attention, and shows of empathy may even get you hugs and attention and that’s the last thing I want. If I can help someone anonymously then that’s much better.
Defining & Explaining Autism
Many people are becoming more aware of autism in terms of what it is, what the limitations may be. Very few are aware of what it feels like, or how to “be” around an autistic person. Whilst every person on the spectrum is an individual, there are common traits, characteristics and models for a Neurotypical (a normal functioning person) to consider:
There are many manifestations relating to the senses within the Autistic spectrum. For some, sounds are overwhelming, for others light, movement, smells can be a trigger. For me, sounds create an impact on my vision and flashing lights create sounds. I hear everything; I can even hear hair moving when I become activated. It is as if the senses become combined and jumbled into one. I use the word activated because this is the point where suddenly i become overwhelmed. To explain in more detail what being overwhelmed feels like – it feels like everything is silently screaming. My skin feels white hot almost like a cold burning sensation. I don’t know where to look and I want to be somewhere cold and dark and silent. I can’t think and I withdraw whilst this screaming and the burning feeling is happening. I can’t focus anymore and I may ignore you if you try to talk to me. I may suddenly remove myself from the situation. I am in meltdown…
The only way back from this is the removal from the situation, or for the triggers to cease. Even then, it may be that the reset button needs to be pushed. The reset button for me is a bath! I have between two and three baths a day. To limit the number of required baths and the water required to fill them, I have a rule. The rule is that I do no more than two things per day as actual away from home events. This could be social interactions like networking events or client meetings.
An autistics world is rooted in logic and precision. For me, verbal precision is extremely important. Saying one thing and meaning another is, for me impossible to navigate around. Within a conversation, I can become triggered by simple remarks such as “I just saw a tiny little bird”. Now this phrase is ridiculous! Would it be a big little bird? The words tiny and little are essentially the same and therefore one of them is superfluous. This is called a tautology! The worst once for me is when somebody says that they are doing a self-assessment on themself! That is guaranteed to trigger me. This triggering creates a feeling of unease that is felt throughout my body. It may even start my neck or facial tick until i am able to mention that the statement is not correct. I am at this point impelled to say something. In a public setting this can be awkward, and in a group setting, my hand will go up as if to ask a question, and i will then proceed to inform the speaker that they have just used a superfluous phrase, or committed a tautology. Some take it in good humour, others may be offended.
Coping Mechanisms & Idiosyncrasies
I have to have people standing on my left or in front of me. I don’t like people behind in close proximity, or to the right in close proximity. Sitting at a table can be tricky. I have to sit at the head of the table, or to the right at the end. Where this isn’t possible – I would have to pull my chair out. Walking is a little easier, and I can have someone on my right if they are ahead of me. When I am talking in a group, it can get a little like performing the ring a roses in a circle. I move which causes others to move, I move again, then people look at me oddly.
I talk to myself and regularly repeat words. Usually a word pops out when I am nervous or making a transition from one activity or location to another. It seems to act as a comforter of sorts. It builds up as an urge which can just pop out. I will often give myself a narrative too and repeat this. An example would be “I have to make tea, I have to make tea, making tea, making tea, tea is made, tea is made”. This is a common one, and so is the “I have to have a bath” narrative. TIME! Now time for me is interesting and slippery… Firstly I was about 15 when I finally learned how to tell the time on an analogue clock or watch. I still have to count from 12 or 6 to find the hour and minute. I have to start with the hour and then start again for the minute. If telling time is tricky then keeping it is even more so. I struggle remembering appointments, I write them in the wrong month in my diary and my perception of time passing seems very different from many…
Autistic people will usually have special interests. There may be one in particular among many linked ones. I love nature and being outdoors. I love weather and being in the rain. I love water, apes, dinosaurs and insects. My special interest has always been martial arts. The routine, the discipline, the logic, the biomechanics, the peace. These interests may change over time, but once you have one it is immersive.
Routine and comfort zone are important beyond any measure of understanding to a neurotypical. To break out of a routine in itself can trigger a meltdown. It takes planning and courage to break out of a routine, and even then the feeling that something is missing becomes overwhelming.
Tactlessness born of authenticity
When dealing with and interacting with people, there can be an element of perceived tactlessness. It is easy to spot the flaws in logic, the contradictions within a conversation and inconsistencies. Once spotted it is difficult not to mention them. An example may be in having a conversation with someone about someone else. Perhaps somebody says something about the other person being difficult to work with. The other person may turn up and I may say to them that apparently they are difficult to work with. This usually seems to embarrass the person who said it, and they then declare that I had made a mistake or misinterpreted. I will then relay the entire conversation (because my memory is very good) and then everyone seems embarrassed. I don’t understand this. Surely it is helpful to understand that you are difficult to work with. Perhaps once you know this – you can improve it. You cannot improve it if you don’t know. This is logical!
Help me 101
Asking questions: Ask one question at a time – otherwise I won’t know which once to answer. Give me time to think about it. I may ask you to repeat the question, or I may say I don’t understand the question. I may say the question out loud a few times. I am thinking about it – just give me time to process.
Don’t touch me!
Please don’t touch me unless I can see you or I invite it. I can shake hands with you, I can give you a hug. Just don’t take me by surprise. By all means ask me if you can hug me. I may say no – don’t be offended by that. I can’t stand a light touch – it’s too much, a firm touch is better. I don’t like my face touched!
Don’t stare into my eyes or expect prolonged eye contact!
This feels awful to me. It brings on squinting and ticks. It feels like my entire being is squirming and that you are drilling into me.
Signs that I am struggling
If I start blinking a lot or making a fist or clenching my hands – just give me space. Don’t touch, hug, or try to comfort me. If you want to help then keep others away from me or suggest that we go somewhere quiet.
Don’t take ANYTHING off of my plate without asking. Don’t snatch anything from me.
Don’t make assumptions – you don’t need to when you can ask me. This includes how I am feeling. Sometimes my face and my emotions won’t match. Don’t judge me based on what you would usually see.
Don’t be general – be specific
Questions need to be specific. Don’t ask questions like how is your health – it’s too vague – just like “how are you feeling”. How happy are you on a scale of one to ten is a little easier…
Take things literally
If I tell you I love you then I do! It probably won’t happen often. I probably won’t gush about it. If I give you a compliment it’s not to make you feel good – It is because I think that you are good.
If I let you eat from my plate, touch my face and I’m not blinking, clenching my fists or disappearing – it is because you have become part of me and my world and my routine. If you become part of my routine then I think that this trumps any declaration of affection…