Self Identification, Public Perceptions - some thoughts based on experiences and observations

I don’t post very much in the National Autistic Society Forums (Fora?). I’m sharing some experiences and activities here for whatever value it may offer, and any comments/discussion it might generate. Just to be clear, I’m not seeking personal support through this post, the aim is discussion and collective, collaborative, learning.

EXPERIENCES SUPPORTING ELDERLY PARENTS

I lived and worked in London most of my adult life, then based myself in East Yorkshire from September 2015 because it was obvious there was something wrong with my Mum and my Dad who was by then housebound was extremely stressed (Mum was his full time family carer with support from social services and a self funded care package which they oversaw). It took almost a year, firstly for medical practice and social services to accept that there was something wrong with my Mum. This involved examination and assessment, then the assessment, a preliminary diagnosis then the confirmed diagnosis which was that Mum had two types of dementia and later, that she also had Parkinson’s.

I didn’t find the “support” the local council provided very helpful, or supportive. Researching around dementia I found a book about a concept called Contented Dementia. I read about it, then self-funded a course devised and run by the Contented Dementia Trust, which I found helped me to support my Mum. One of the key lessons was “don’t try to defeat dementia with logic” – an important point being to accept that the person with dementia’s reality was very real to them, if it was different to others, and that trying to force a person with dementia to accept the reality that somebody without dementia’s reality caused them enormous stress and anxiety, with consequences which could range from anger or shutting down.

I found the Contented Dementia approach something I could understand, relate to, and apply.  It helped me in supporting my parents. I’m conscious that the Alzheimer’s Society, certainly at that time, did not seem very warm or supportive towards the Contented Dementia Trust, but I found the course, principles and methods much more helpful than what was on offer from the local authority.

Some of the healthcare people supporting my Dad thought he might well be on the autism spectrum. I hadn’t known very much about autism until that point, so I began to learn about it in earnest. I will not go into all the reasons why, but I think from what I have learned, it is likely that my Dad was intelligent, gifted, friendly, caring, and also on the Spectrum. Now, looking back, I think it possible my Mum may have been too.

My Mum died in May 2017. My Dad died of hospital acquired Covid during Christmas 2020. We had isolated as much as possible during the Pandemic.

EXPERIENCES DURING AND AFTER THE PANDEMIC SUGGESTING THE POSSIBILITY OF AUTISM

As Society re-emerged from the Pandemic, I found that while I didn’t like being completely on my own for very long periods, I had found that I felt a lot less stressed, less tense, in many ways during lockdown, and that also my confidence out among groups of people had declined. I had felt that I was introverted, and so assumed that was the reason.

Then, interacting with a friend I have known since early teens, and his grandson who has been diagnosed as on the autism spectrum, around a shared love of trains, my friend asked me if I had ever considered that I might be on the spectrum, because some of my reactions seemed to him like those of his grandson – one example being noise. I found a screening test, and the result put me very firmly on the spectrum. I asked other people to try the test – most came out neurotypical.

This came as a shock. It had not previously occurred to me that I might be on the autism spectrum. I began to learn more about autism and over the last two and a half years  have found that my “traits” and many experiences in life track with those of people who are diagnosed on the spectrum.

PAST EXPERIENCES THAT FIT

One particular period comes to mind. I got up one morning in late May 1994, made myself a coffee as was my routine, and then found I couldn’t summon the willpower to get dressed and go into work. I rang into work sick, and also did so the next day. I spent those two days very quietly in my flat, and then found I was able to summon the willpower to go into work again. The welfare department of my work, Shell, asked to see me and said that while they didn’t think I had been skiving, they didn’t think I was alright either. They coaxed me to talk. They taught me relaxation techniques almost immediately. They funded an assessment, and then based on that assessment funded a course of psychotherapy, by an approved psychotherapist they selected. I found it very painful and very challenging, but enormously helpful, and self funded beyond the period my employer provided.

I remember in the initial conversations with the Shell welfare department I was asked to say what I felt, not explain what I thought, and that was a prominent theme in the ensuing psychotherapy sessions. I learned to achieve much greater recognition, and acceptance, of my own feelings, and learned to recognise better those of others. I also learned techniques for managing anxiety, stress, setting and maintaining boundaries round personal space. It was very helpful. After the course of psychotherapy ended, I continued to learn, not least about emotional intelligence.

I have experienced other times of feeling overstretched, burned out, but not to the same extent as in May 1994 (it was a more extreme version of previous experiences) – I have managed much better with the techniques.

As I have learned more about autism, I have found that my experiences and traits seem to track with those of people on the spectrum. Intense focussed interests, socialising among large groups of people I tend to find more stressful and draining than re-energising – although I do like a certain amount of it. I am very susceptible to noise. Until recently when I tended to be confronted with a train running late, or a rail replacement bus service, when I was heading somewhere as a catastrophe.

I have come to see that incident in May 1994 as fitting in with what is described as autistic burnout. I also feel that the techniques I learned on the course of psychotherapy, while autism and neurodivergence were never mentioned, equipped me to operate much more effectively as a neurodivergent person in a predominantly neurotypical world than would have been the case without them.

SELF IDENTIFICATION AND PUBLIC NARRATIVES

As of now, I self-identify as somebody who is intelligent, articulate and caring, and has a brain that functions in an autistic way, though I haven’t so far sought a formal face to face consultation and assessment.

In the spring of this year the former MP, and broadcaster, Matthew Parris wrote an article in The Times asserting that we have to put an end to the “mental health culture” and saying he doesn’t believe ADHD exists and autism is massively overdiagnosed. He also said that anxiety is a normal part of everyday life. The thrust of the message seemed to be anyone who claims to have issues with their mental health is workshy and trying to scrounge off the state.

This was followed up a short time later by UK Prime Minister Sunak saying he had “run out of patience” with “sick note Britain” and echoing the sentiments of Matthew Parris’s article.

Added to that was reading about people who are carers for relatives, who receive carer’s allowance for doing so, also doing part time work, now being prosecuted by HMRC for overpayment of benefits, when HMRC has known what they have been paid through employment and benefits.

The above presented me with a dilema. Very limited disclosure about what I have been learning about my own seeming position on the neurodivergence map kept things comfortable in many ways. Reactions of some people concerned me. On the other hand, I had been very fortunate that my former employer Shell had thought I was not OK and had funded assessment and psychotherapy through a reputable supplier. I had not needed to claim any benefits while I was supporting my parents, or since, and had been able to self fund a helpful course on supporting relatives with dementia. In opting for a what seemed a more comfortable life, and while at the moment I am self identifying rather than being formally “diagnosed”, I felt I would be betraying two groups to which I feel I belong – people who are autistic/neurodivergent and people who have or are supporting relatives with dementia and/or variations from “normal” which are classified by the state and much of society as disabilities.

DISCLOSURE IN PROFESSIONAL COMMUNITY

I decided to disclose my position in the professional arena and started to post about my own experiences and observations on LinkedIn. I expressed the opinion that very high levels of anxiety that neurodivergent people experience are a result of being different to the majority, and for example being rejected/feeling threatened and sensing hostility, that these levels of anxiety are real and not part of everyday life, and that they are disabling. This raises the question of whether it is the levels of anxiety that are disabling, rather than the differences. I also feel that while expressing things in terms of neurotypical and neurodivergence/neurodiverse is helpful, it has the disadvantage of creating a barrier or gulf. I feel that neurotypical and neurodivergent/neurodiverse people each have strengths and weaknesses which have the potential to complement each other, creating more effective teams. To achieve this, it is necessary to accept the differences in the way that brains work, and accommodate them. I came up with a working term for myself – NeuroCollaborative, but no doubt there are other terms already in use.

“THEORY OF MIND”

As I’ve been learning about autism especially, and neurodivergence more widely, I have come across the term “Theory of Mind”. I have come across the term in the context of neurotypical people as well as nuerodivergent people, for example in “The Laws of Connection: 13 Social Strategies That Will Transform Your Life,” by David Robson (Canongate).

In reading and learning so far, I’m not convinced all those who use the term mean the same thing when they use it. It seems to be used quite a lot to refer to a neurotypical ability to intuit what others are thinking which develops from an early age. There are arguments put forward that this ability does not develop in autistic people. Self identifying, I would say from experience that people with brains functioning in an autistic way learn to observe and analyse, and thus develop the ability to read what others are thinking. There are those who argue that people with brains that operate in an autistic way are not able to tell at all what others are thinking. Based on my own experience, I think that autistic people can tell what others think, but arrive at it in a different way. I think that separates autistic people from the neurotypical majority, that can feel threatening to both sides, and in the autistic people it causes very high levels of anxiety – the feeling of not being connected to the majority.

I think based on observation a weakness of neurotypical intuiting of what each other is thinking leads to “group think”, believing because the majority think something they are right. The minority, the person with the autistic brain may be in the minority because they arrived at a conclusion in a different way, but that might be precisely why they are right. That’s why it can be very useful for neurotypical and neurodivergent people to understand each other better, find workarounds for differences, and collaborate.

In a comment on a post I put up on LinkedIn on Thursday I was given a citation and link to a peer reviewed article reviewing research into Theory of Mind and autism which is a very interesting read (see: www.ncbi.nlm.nih.gov/.../)

BRINGING IT ALL TOGETHER

Usually posts in this forum seem to be requests for help and/or sharing hints and tips. The above is more of a piece to stimulate thought and discussion and arrive at good ways forward. Although I’ve not been as active professionally since I began to support my late parents, researching, writing and facilitating discussion to arrive at better solutions is at the heart of what I do. I tend to be more comfortable writing than speaking. I decided to try posting about my neurodivergence learning and see what that might achieve.

In the context of self-identifying, the two and a half years of psychotherapy I followed were very helpful in giving me tools and techniques to function much better. Even so, I still experienced very high levels of anxiety. After the Covid lockdowns, I experienced a marked loss of confidence socialising. When I realised that it was likely I am on the autism spectrum, that threw me, and I experience further significant erosion in confidence. Since then, I have learned, recalibrated life, and now feel much more confident and sure footed. I’ve adopted some new techniques and workarounds. In May I gave a talk on medieval history to a quite discerning group with highly intelligent, experienced, high profile fellow speakers. I was a little tense, a little apprehensive, enough to spur me on to do my best, but not the very unpleasant levels of anxiety I formerly experienced if I was speaking to a large group. I understood why what some might seem as over preparation – backup plans if the technology went wrong for example – are right for me. The technology did go wrong and my backup plans were needed and ready.

Just from my own experiences, understanding why I have always felt a disconnection from many groups of people, and finding positive ways of managing that has greatly reduced my anxiety levels. Taking much more informed decisions about whether to adopt or present behaviour which “oils the wheels” and builds better relationships with neurotypical people also greatly reduces stress levels, especially when rest periods are built in. Also understanding why ones “quirks” while they may be different from the majority, are beneficial to me is also helpful. Knowing that particular interests, books, films will recharge my batteries and enable me to do necessary activities which are draining means I can plan combinations of necessary but demanding activities with periods of recharging batteries that are right for me, rather than right for neurotypical people means I have a lot more bandwidth, I function more effectively, and I feel much better. It’s planned and thought through rather than being haphazard, or feeling like I am doing something against the currents created by wider society. Isn’t that beneficial to society, rather than me alone?

One of the most important lessons I learned on the Contented Dementia Trust course was not to try to defeat dementia with logic, not to try to impose one’s reality on somebody with dementia because the reaction can range from anger and aggression to withdrawal and shutdown. I think that  lesson applies to neurotypical and neurodivergent people too. Neither side should force their reality and best modus operandi on the other because that will be detrimental to the other and can cause reactions from anger and aggression to withdrawal and shut down. Understanding each other better, recognising the differences and accommodating them, I feel, is the best way forward. Everyone is busy, it’s much easier said than done, but I think it is an investment in a better, more collaborative, constructive and productive future.

I feel that agency for neurodivergent people is important - managing ourselves, but also being much more active in research.

I realise the above is quite lengthy. I thought it worth sharing my experiences, observations and activities for whatever value it may offer, and useful comment and discussion it might stimulate. I accept, both here and in LinkedIn and other public communities, if one puts one’s head above the parapet, not everyone will agree, and there may be adverse comment, but the alternative is to be intimidated into not sharing experiences and points of view.