Autism and the lack of an I-reference point

When I get on stage I consciously take time to really connect with the people in the room. That helps me to come up with words that are aligned with everyone in the room. It also helps me to establish myself in the new atmosphere. I need this because of my hypersensitivity. I believe you need to use your equipment the way it serves you most.

This hypersensitivity is something that I was born with. I perceive the world through feeling. One of my earliest memories is when I was about two or three years old and my mother and I went outside. I scanned her mood by feeling and noticed that she was totally fine and balanced. When she closed the door we met the neighbor. I scanned her too and she was fine as well. She ignored me by the way because I was easy to ignore. I never spoke a word. The moment they connected they started talking about very depressing subjects. Immediately they went from fine to fidgeting!
I remember this incident so well because it sounded like a huge scratch on a record album. “Why are they making themselves miserable?!” I thought. From that moment on I was fascinated by questions like ‘Why do people do what they do and say what they say when that feels so not aligned with who they truly are? Why are they making themselves unhappy?’. Through the years when I was 24/7 busy resolving these questions and observing people I developed some interesting skills.

Somehow I was able to travel along with the routes someone took in their brain by observing every detail that changed in verbal and non-verbal communication which I continuously compared to their mood changes and natural state of being. So I was able to see which misconceptions and thought patterns were causing suffering. I became an expert in pinpointing these patterns in just a few minutes and free the person carrying them. I attracted rooms full of people who longed for clarity about themselves and wanted to learn different ways of living and became a role model of happiness and success.
You can imagine how surprised I was when I discovered that I was able to develop these skills because I have autism. I was late-diagnosed at the age of 40. And it turned out I was raised by an autistic father and have four children and three of them are autistic as well.

So. When I got this diagnosis I started reading all these books about autism because I wanted to learn. After all, it was my obsession to understand people so I needed to know what was different about me compared to all those unhappy people who wanted to learn from me despite or thanks to my autism.

What I noticed in those books was first of all… there was a huge difference in books written by autistic-experience experts and books written by so called neurotypical people. People with a normal, ‘healthy’ neural system. It seemed we are two different species not really understanding each other. Second I totally agreed with what they concluded about autism when I looked at my autistic children as an outsider but when I considered these theories from the inside I couldn’t help but feel that they were missing something. Two things actually!

One! I missed the feeling perspective that goes with hyper sensitivity which is so typical for autism because that would explain half of our logic.

Two! When I observed in detail what routes my brain took facing the problems described in the book I noticed that problems start when a claim is made on the ‘me’. The apparent problems like the lack of empathy and imagination and problems with planning, setting boundaries and making choices for the future are because of one major overlooked fact:

The lack of an I-reference point

And I don’t mean the eye or the gadgets but I as in ‘me’.
What do I mean by that?
This I is a conceptional image that you [neurotypicals] can all use to refer to when it comes to issues in the future or in the outer world. But we [people on the spectrum] lack that I-reference point.  And because we reach each other and ourselves with language, every time a claim is made to that ‘I’, verbally or by thought, attention is sought in all corners of the mind and gets lost, because it cannot find anything to refer to … and never reaches the rest of the question or assignment.

And so I started experimenting with this discovery and focused on skipping the ‘YOU’ in my language towards autistic people. First with my children. One night daddy put them to bed but my autistic son resisted the idea of going to sleep. He came to me… I was just having a bath… and I said to him ‘Do you know why it’s always so hard to find an answer to the question: What do you want?’ ‘ Oh yes’ He said ‘that is so difficult!’ And I said ‘That’s because there is a ‘YOU’ in that question.. what if we leave that out of it and I would ask: What does want?’ And then something stunning happened.. His gaze went inward, his shoulders went down and he answered: ‘to bed..’. And to bed he went… 

I enthusiastically went on researching end testing this theory and once I was giving a training and I asked two people to come to the front of the room. One neurotypical woman and one autistic man. So I asked the neurotypical woman: “At noon we will have lunch and everything edible on this planet will be available, what are you going to eat?” Her eyes went up, searching for an answer somewhere in her brain, and she almost immediately answered: ‘quinoa’. Then I asked the same question to the autistic man “At noon we will have lunch and everything edible on this planet will be available, what are you going to eat?” His eyes flashed around and around, he shook his head, hunched his shoulders and eventually answered ‘I don’t know’ I even saw a bit of panic in his eyes. That is a very common reaction for autistic people. So I rephrased my question: “At noon we will have lunch and everything edible on this planet will be available, which food matches this moment best?” Did you hear what I did? I left the ‘YOU’ out of it as well as the reference to the future. Wanna know what he did? His eyes went down, he took time to really feel and said: “something solid… like bread” And his answer was so aligned with what he needed in that moment, so genuine that all the people in the room were silent.

The thing is… Without this I-reference point we can only fall back on either rules or feelings. Many of us haven’t learn to cope with our sensitive being because the whole human race finds that difficult. It’s also the case that many of us [people on the spectrum] were deeply hurt by all the misunderstandings of our behavior, so feeling is shut down and the only security we could hold onto in this illogical society were rules. But I deeply regret that in the support of autism so much is solved by applying rules instead of this much more natural and logical approach. Once you as an autistic person have created a rule you will not be able to get rid of it and you will be imprisoned by it. You would be surprised by how many autistic people have a hate/love relationship with rules. More hate than love actually. In fact, rules are in a lot of cases the cause of autism-related problems like confusion and inflexibility! Because when first you’ve been told that it’s right and it turns out to be left you’ll become confused, inflexible and need emotional explosion to get rid of your high level anxiety.

In associating with autistic people, this other way of communicating would not only overcome difficulties related to autism and focus on teaching us to adapt to this society, but raise a generation who can help build a more genuine new one. We will function a whole lot better if we don’t try to use this ‘I’ principle the way neurotypical people do. We cannot project a ‘me’ into the future to make choices, set boundaries, come up with goals and place that ‘me’ into the emotional state of another person to cognitively imagine how things are for them but(!) we can bring ideas and peoples’ mood into the here and now and refer to the feeling of this moment in order to come up with truly aligned choices and behavior. But that would reveal a truth many of humankind prefer not to see.

The lack of an I-reference point isn’t really a problem it just asks for a different way of living. I experience my autism as a gift for a really genuine way of living and I would like to invite you all to explore that way as well because it could be benefical for everyone and it would change society completely.

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"It has been my lifelong fascination to investigate why people say what they say and do what they do ... because it seemed so illogical"

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