Undiagnosed Autistic Adults: The Challenge of Employment

Currently I am self-employed. I struggle in some areas and often feel disheartened and low on motivation to keep pushing forward, but I am currently making a living self-employed, so this isn’t what the bulk of this blog post will cover. What I want to discuss here is what it was like to be an undiagnosed autistic adult facing the world of work, what challenges I faced and what I found helpful.

I was diagnosed autistic aged 37. I had suspected I might be autistic for about 15 years at the point I was finally diagnosed. My early suspicions were just vague suspicions, it was probably about 8 years prior to diagnosis that I really thought I might be autistic. I will mention why further down the post. I have generally been against labels, feeling that we are all human, we all have differences, all difference strengths and challenges, and so should be treated as individuals to get the best out of every one of us. It wasn’t until I was becoming very depressed and reached a point of being suicidal from work challenges that I seriously thought about seeking diagnosis. I wish I had done so earlier.

My first job was as a teenager working in a holiday camp. My mum helped me get the job. I don’t think they ever refused anyone applying! I received a letter to say to come in to the holiday camp. I went in dressed in black trousers, white shirt, tie and smart shoes. I was scared, everything was unknown and uncertain. I arrived and was guided to the room I had to go to. It was a room like a lecture hall. There were dozens of other people present, all of us starting our first day. There was one other young person dressed smartly like me, everyone else was dressed scruffy. We were all told what jobs we would be doing. I was told that I was going to be working in one of the restaurant venues. It was a food hall with food outlets around the outside, a bar in the middle and a main restaurant at the back. I was taken to get my uniform and then shown to the venue. At the venue I was told that I would be working on the trolley’s clearing the tables and occasionally working on the tills.

On introduction, the manager of the venue said who he was and went to shake my hand – I looked at it, I didn’t know what I was supposed to do. He said “aren’t you going to shake my hand?”

I didn’t know what I was supposed to say or do or why I was supposed to shake his hand so I said something like “I don’t know you, so I don’t know if I like you to shake your hand.”

I didn’t shake his hand.

I felt intimidated by the other staff, especially the senior staff, they were all joking with each other, some of them bullied me over my time in the job, but I felt powerless to do anything about it, all I could do was try to avoid those staff. I didn’t mind clearing tables apart from when it was noisy and chaotic due to lots of customers, and customers trying to talk to me, like asking for cutlery etc, if things had ran out. I really disliked being on the tills. I worried that by using the till I was going to somehow break it, I worried I wouldn’t be able to focus on everything I needed to focus on and I would make a mistake, and I had a problem with the idea that customers are always right, when this isn’t true. If a customer told me I gave them the wrong change I would stop the queue and cash the till up to check and only if the till was wrong would I then give them the money. This didn’t make me popular in this role. Fortunately, I was moved into the pot wash. I loved this job. I rarely had to interact with people, I was often on my own in a room just loading and unloading a large dishwasher.

At certain times of the year, like Christmas, I would be asked to do different jobs like being a waiter. I always refused and would walk out if they put pressure on me to try to make me do it. I tried to find any excuse I could to do something others find boring, because often those tasks others find boring are the tasks where you are on your own doing something repetitive. I ended up having a brilliant manager. One time when I walked out he visited my studio flat every day shouting up the side of the building (I didn’t have a working buzzer and had no desire to get it fixed) until eventually I responded and he talked me into coming back into work and he made changes for me to help keep me in work. This above and beyond management where he put me and my needs first rather than showing frustration towards me and just replacing me was really helpful.

It never crossed my mind to seek help from people, so when I was doing this job which involved me walking out lots and involved seasonal hours where you work very few hours in the winter and I would go without any income. At these times I wouldn’t eat, I wouldn’t have electricity, so I wouldn’t have any heating, cooking facilities, lighting or hot water and was often behind on my rent and ended up with county court judgments to take council tax out of my wages, meaning at other times of the year when I was earning a more normal weekly wage I was paying back money I owed on rent and paying more on council tax arrears. During winter when the holiday camp was only open Friday afternoons, Saturdays, Sundays and Monday mornings I would only eat the meal supplied in work (one meal a day Friday, Saturday, Sunday and Monday) then I wouldn’t eat until the next Friday.

Ice used to form on the inside of my windows at times because my studio flat was so cold. I would just drink cold water all week. I never put money on the electric. When it got dark I just sat in bed in the dark doing nothing until I fell asleep. I never sought help or saw this as a problem, it was just the way it was.

Eventually with that job they were making changes I couldn’t handle so I walked out. By then I was in a relationship, the person I was in a relationship with was appalled about the conditions I was living in, we lived together which made it easier to cover outgoings. She also knew about the job centre. I didn’t know anything about it prior to meeting her. When I walked out of the job I went to the job centre, looked at all the jobs on postcards over the walls until I found one saying ‘no experience required’. I spoke to a job centre worker who telephoned the company, they invited me along for an interview and I was offered the job. The job was working in care homes for people with mental health challenges. There were also some autistic people in the homes. This was my first introduction to autism and the first time I met people where I recognised something of myself in others. I didn’t think anything of it really at that point.

The job was generally much quieter than working in a holiday camp, most of the residents were on strong drugs and spent their days sitting in the lounge reasonably unresponsive. Just a few of the residents walked around and engaged in conversations. I also liked the structure, there were clear meal-times, medicine times, tasks which had to be done like cooking and cleaning, and reports which had to be hand written. It was the same structure every day. There was some variation, like some days food was delivered, some days a professional may visit the homes, but it was easy to largely just get on with my job.

I received some discrimination in this job around things like not properly understanding instructions. I would assume I had understood and would get told I hadn’t. Some parts of the job I found difficult, like having to occasionally make phone calls. I ended up leaving this job because they were making changes to the shift pattern and I didn’t want the changes to happen. I was uncomfortable with the idea of the changes. I know this sounds ridiculous, because by leaving I was putting myself through change to avoid change, but that never crossed my mind and is a pattern I seem to follow without realising that I am inflicting myself with the thing I am trying to avoid.

I left that job a few days before the changes came into effect. In my next job it was the only job I had applied for, just as it was before. I had seen an ad in the local paper for unskilled staff, it was another job in care homes. I had sent my CV to the address in the ad, attended the interview and was offered the job. I think because I don’t see people as having any status over me and have very little interest in the opinions of others I can come across well in interviews because I am calm and confident and just me (although I did fail to get one job because the interviewers felt I obviously didn’t want the job enough because I appeared to calm and confident. They felt if I wanted the job I would be nervous due to trying to impress). I also don’t see the social communication aspects of interviews, I just see that you get asked a question, if you don’t know the answer you ask if they can give an example of what they are after, if you still don’t know what to say or don’t understand you ask if they could rephrase the question, if you still don’t know the answer you say you don’t know. You talk facing the person who asked you the question first, then look in the directions of the other interviewers while you are answering, ending your answer looking at the person who asked the question. I see this as a planned structure to follow and not a random social interaction, so I don’t do too badly at it. My view is also that you can only be you and if they don’t feel you are likely to be able to do the job and so don’t choose to hire you, then that is fine, you are likely to have struggled if somehow you scrapped through so I don’t think about how the interview will go, just about answering questions and then getting on with my day.

In that job I turned out to be very good at it because of being more emotionally detached than other colleagues, but I was threatened with the sack on a number of occasions for things like failing to say things like good morning, good bye, how are you, etc to work colleagues, and for being honest with social workers and inspectors rather than focusing on the image of the company (I applied for promotion once in the job and was told I wouldn’t get it because I am not capable of just doing as I am told and towing the company line). I also struggled with many aspects of the job like making phone calls, but I often could manage to get other staff to do these things while I did ‘the paperwork’ that they wouldn’t want to do, they would prefer to spend a couple of hours making relevant phone calls, than writing pages of paperwork, with practice I learned to be able to make phone calls to things like the police where calls were structured and predictable. This job was caring for teenagers with challenging behaviour. Many were autistic. This was where I really started to wonder if I was autistic. Staff would often joke about my similarities to the way the autistic teens would behave. I used to just laugh this off because I didn’t know any other way of responding. Due to challenges I was facing in this job I went to Unison who I was a member of at the time to try to get them to help me tackle the discrimination I was facing. They agreed I was facing discrimination but said they couldn’t help because nothing in law protected me. They said because I wasn’t a minority, disabled or female etc I couldn’t get help, so they advised I should either leave or stay and be a thorn in their side (the discrimination was clearly to try to encourage me to leave) and leave on my terms when I was ready and had something to go to. I left Unison because I saw no point in paying to be a member when the one time I needed their help they said they couldn’t help. I then left the job once I had found another job which was also in a children’s home. I feel that if I had an autism diagnosis at this point I would have been able to have Unison’s support in tackling the discrimination.

In the next job I generally got on fine. I had a few issues where I would get told off for doing things like mimicking sounds and things people say. My manager saw this as me being rude, despite me explaining I did it automatically and that until people point it out to me I don’t realise I am doing it. I am not doing it to be offensive etc. My reason for leaving this job was that I was cycling to work one day and was hit by a truck. I was off work for a while with injuries and came back to work for a few months, but they ended up having to lay me off when they were making cuts. Privately one of the managers said it was because I wasn’t able to restrain etc, and they were having to cut back on staff, so the choice for it being me as one of the staff laid off was because if they keep me they have to have extra staff on shift because I can’t join in restraints etc. This made sense to me and I was fine with this. The companies public stance was that I just happen to have been chosen because they needed to make cuts, with no explanation why I was cut (I was the most experienced member of staff in the home). Something new in this job was the use of computers. I tried to convince the company to do everything by hand. It terrified me (and has in all future roles) using computers. I worried I would press a button that would delete everything from the computer, would crash the internet, would blow the computer up, etc. Even today this is one of my biggest worries regardless of how illogical I know this sounds.

Following the loss of this job was a period of over two years unemployed. The system in the job centre had changed, you could no longer look at postcards on the wall and find a job to apply for, you had to do it on computer terminals. I struggled with this, you needed to really know what kind of job you wanted to search for before searching. The trouble is I didn’t know what type of job I wanted to search for. You also just saw the job title, not all the details, so the best you could do was to go through each job clicking on it and reading it, you couldn’t just scan for a job based on pay and experience and see a brief description of what the job entails. I would have no idea what a job entailed based on just the title. I really struggled with this and when I told the job centre this they didn’t seem to care, the attitude was that this is how it is done, it was my responsibility to just do it.

I applied for a care job thinking I would keep quiet about my injuries unless asked. I got the job and within 24 hours of my first shift I couldn’t handle the uncertainty of the job and whether I was likely to make my injuries worse or lash out at a teen if they accidentally hurt me because of my injuries, so I told the manager I can’t do this and I left.

I applied for every job I could, thinking I would have to figure out how to stay in the job once I get offered it. I got offered a telesales job, I knew that it can take me hours to weeks or months if at all to make phone calls, but thought I have to apply and figure that out later. I walked into the job, saw all these people in tightly packed rows with bright lights overhead, all noisy and chaotic with everyone talking into headsets and everyone being in ear shot of each other. I turned around and walked straight back out again.

I was offered a mobile phone shop sales job, and on my first day I didn’t turn up, I went to the shop before it opened on that day and left a letter to say I can’t start it because I can’t face serving people and dealing with the technology and using tills and counting money etc.

I got offered a job as a domestic violence worker. The company created the position especially for me because I didn’t quite meet the requirements for the actual advertised job, but they wanted to hire me and said they had never thought a male could be a domestic violence worker until I argued my case in the interview. I turned up on day one, and walked out by the end of the day. I found so much so overwhelming. I struggled with the idea of talking on the telephone with people in the office with me that could hear me, I struggled with having to interact with people in the nearby hospital and the idea of having to navigate a large hospital, and having to work hours where I may have to finish at different times, and having to do over an hour commute each way to and from work. I couldn’t overcome these thoughts and perceived challenges, so I walked out. This may have been different if I had an autism diagnosis and additional support.

After a year of doing this – being offered jobs and walking out of them, a job centre worker who had always been incredibly supportive (even not cancelling my benefits as she was supposed to do when I have been offered jobs and have not taken them or have walked out of them) referred me to a Royal British Legion scheme which was designed for people with learning difficulties or autism etc, or those who had been unemployed for over two years. She said I didn’t meet their criteria on paper because I am bright (although I didn’t do well in my GCSE’s! And have no other higher academic qualifications) and don’t have any disabilities, but she felt I needed that service.

The Royal British Legion scheme supported me over the next year to get into work. I had other similar examples of struggling with jobs, but eventually I applied for a job where I was going to be helping parents to stop their teenagers from committing youth crime and antisocial behaviour. On my first day in this job I was in my managers car with her. We were talking and she said that she thinks I am probably autistic and said was it okay with me if she treated me as if I am. She said she felt that it would help our relationship and help to get the best out of me in the job. I said that was fine. This was the moment I gave serious thought to the fact that I may actually be autistic. I had suspected previously, but not taken my thoughts too seriously, it was just people saying I behaved and had traits similar to children and teens we looked after. I had never had someone explicitly say ‘I think you are autistic’.

In that job I did face challenges. I continued to struggle with using computers and computer systems. I would have to psych myself up to use them. I still struggled to make phone calls and would try to find quite private spaces to make phone calls. I still had people complain about my actions in staff meetings and about me talking about my interests all the time when talking with staff, or not talking to staff at all and being unsociable. I also had problems with discrimination from some staff, but generally it really helped having a manager who was working on the assumption that I was likely autistic. They fought my corner a lot against other managers and teams and helped me to look at different things, like developing my emotional intelligence. This job also got me into holding support groups and courses for parents, many of whom had autistic children and were struggling with the system (like seeking diagnosis, support in school, benefits, etc) and struggling with the behaviour of their children (violence, anti-social behaviour etc), and I also started holding courses for professionals (schools, social workers, etc).

That manager left their job. They weren’t initially replaced. My work colleagues who did the same job as me but in other locations also left and it had been decided not to replace them all so I ended up having to do their jobs as well as my own meaning that I was suddenly having to work in areas and with people which were unfamiliar. My new managers weren’t experienced in the area that I was working in. This made it difficult to do my job. They also had different expectations of me to my manager. I knew I was going to want to leave. Fortunately my old manager was hiring staff to work for her in her new role. I applied and got offered the job.

I started working for my old manager in my new role. The role had two line managers. Initially this wasn’t a problem. They had decided that my old manager would do most of the managing, my other manager would just focus on managing me in relation to more administrative and day to day updates rather than specifically on my role. This worked quite well, but as time went on my old manager’s job role changed and my other manager had more management over me, then eventually the decision was made for my old manager to no longer manage me, and for me to just be managed by the other manager. This was where things changed for me in the job. The manager I ended up with wanted things done their own way. I had a desk in a corner with high desk dividers which I left plain so that I could look at the dividers and clear all distractions, there also wasn’t strip lights above me, I was near a window with natural light. My manager wanted me to move to an open plan bit of the office with strip lights above me, people sat either side of me and across from me, no desk dividers, lots of movement of people walking behind and in front of me, people talking on phones all around me, talking to each other. I kept raising that I couldn’t work under these conditions. I said I didn’t want to move, I explained why I wanted to remain where I was. I was told I have to do as I am told and do my job. I kept protesting, but was moved. I was asked by my manager if I had some kind of mental problems because of how I was behaving and responding. I said I think I am probably autistic. This didn’t make any difference. All of my work colleagues and staff had always been supportive of me being me, but my manager wasn’t.

My manager also kept accusing me of ‘taking the piss’ because I would fill in paperwork, like my yearly performance development review and apparently didn’t appear to answer the questions correctly. I was told for example, that I had obviously not spent any time filling it in and clearly didn’t take it seriously, when in fact I had spent hours trying to fill it in as best as I could. My old manager used to make sure everything was clear for me, this manager didn’t, they just said you should know what to do and do it. I was told off for completing tasks and not telling my manager I had completed them, and told off for completing tasks and telling them I had completed them. I couldn’t seem to get it right, what I was supposed to report back on when completed, and when it wasn’t necessary to report back.

Every day coming into work now I felt was coming in for a fight where I was going to have to battle with my manager. I felt discriminated against for being different. I was also facing discrimination within clinical supervisions and on work courses. I continually complained to higher managers etc, but nothing ever got done. I am generally very blunt and assertive and worried I would end up saying or doing something which would over-step the mark while trying to stand my ground and create certainty and escape anxiety which could lose me my job and maybe impact on future jobs. I tried to find another job, but now I was in a better paid job and couldn’t find alternative employment. I started to feel trapped and with my work environment how it now was I regularly felt anxious in work, which led to me becoming depressed and as time went on I became suicidal. It was this which led to me seeking autism diagnosis because I wanted to be able to access occupational health support to help change my work environment so that I could go back to doing my job to the best of my ability.

It took almost a year from going to the GP to be referred for an assessment to receiving the diagnosis. By the time I received the diagnosis I had been made redundant. I decided to set up self-employed. I wanted my main focus to be as an autism advocate focusing on raising awareness and educating about autism where I would share my personal experiences of being autistic as well as my professional knowledge and experiences with autism (having supported families, professionals, teachers, workplaces, taught parenting courses, supported autistic children, teens and adults, etc). I wrote what I describe as a helpful autobiography, Look Into My Eyes, my wife wrote a chapter in this about what it is like to be in a relationship with an autistic individual. It covers what life is like as an autistic individual from birth to adulthood including strengths, challenges, what helps, what doesn’t, etc, since then I have written two more autism books (Asperger’s Syndrome: Tips & Strategies, and An Autistic Perspective: Death, Dying & Loss). I gave talks in local libraries about being autistic where I also took time to respond to audience questions, and gave talks to local autism groups, but as these groups ended due to funding cuts and the libraries stopped hosting talks for the same reason I have spent the last two years unable to get any speaking engagements and am trying one last time to see if I can get some for 2019. If I don’t then my plan is to give up on this as clearly there isn’t interest from people with autistic children/teens or employers with autistic staff, or schools with autistic pupils to hear an autistic person share their personal and professional knowledge and experience and story. I have tried unsuccessfully for a few years to link up with the National Autistic Society and what was Autism Sussex and other autism groups, but never hear back (one of my goals was that I wanted to be an official National Autistic Society autism advocate and wanted to find a way to have some support around helping me to arrange talks so that every month I could give talks about autism).

I have spoken on Sky News about autism, on local BBC radio, in local and national newspapers, I have made about 70 videos on my YouTube channel about autism and more… (you can find out different things I’ve done, like newspaper articles etc, on my media page) But being autistic and struggling with aspects of communication skills means that I struggle to make phone calls, I think I come across wrong when asking for help and so never get the help or support and find that autism charities and support groups don’t support autistic people, at least not autistic adults. They seem to support parents of autistic children and sometimes share when people fundraise for them, but I’ve never been able to access support from them or even get engagement with them. If I was an employee seeking support I would find this disheartening. In theory you can push for occupational health support, but you want to be able to link in with autism professionals and learn more about how you can develop or progress yourself and how you can feel empowered as an autistic individual for who you are and have support to learn what support is available and what your rights are, perhaps when benefits are available to you etc.

As a self-employed person who spends hours everyday trying to interact and help other autistic people, their families, friends, partners, employers, work colleagues, teachers, etc., online in forums, YouTube, Facebook, Twitter, via writing books, making videos, doing live stream ‘ask me anything’ videos, blog posts, getting on local BBC radio, Sky News, local and national newspapers and magazines etc, it can be disheartening when three years later it is still a struggle to raise awareness and support in what I have to offer and in my desire to share and help, but I am in a much better place now as a person than I was before receiving an autism diagnosis. When I was made redundant I went from depressed and suicidal to deciding I had a purpose and a path to help prevent others from having the same experience I had, and to do what I could to directly and indirectly (by helping parents, teachers, employers, partners, friends, etc) help other autistic individuals this was something I became passionate about and devoted to doing, but after three years of very little traction or support it feels more of a struggle and feels like it is reaching time to move on and see what I should focus on instead. Looking to the future, if I am not helping in the field of autism awareness my first choice of plan would be to be somehow making enough living from writing books that I could anonymously write books. Ideally I would like to be in a position where someone manages me and deals with my finances, PR etc.

Second option if writing books wasn’t likely to make me enough income, would be to be employed in a created company (my own company) where depending on what they could achieve I would have one to a few staff, but I wouldn’t manage them, one of them would be the manager, they would organise things for me, they would work with me to find opportunities which suit me, which make money while allowing me freedom to have time alone – so perhaps running a maximum of a few courses or talks etc per month, writing articles, books etc, and making videos etc, and maybe having a sleep app or mental health app etc and a few branded products and a few other ideas I have. I would want to just just do work, be paid a wage and not have to deal with the business or tax returns etc.

My third choice, not so preferable because of reduced control over the role and reduced income, would be to be employed in a simple job – my dream job would be something walking around in nature everyday largely alone or doing something solitary like washing up, but the trouble with this is that it wouldn’t pay what I need to live on and I don’t know what job I can do which suits me as an autistic individual and pays enough.

This has ended up being a very long blog post so I am sure few people will have read this far! But I couldn’t think of a shorter way of sharing everything I wanted to share and didn’t feel it would flow across multiple posts…

What are your thoughts about undiagnosed autistic adults and employment? Do you think you are an undiagnosed autistic adult? Have or do you struggle to find and hold down employment or have you been fortunate? If you have been fortunate, what is it that makes it work for you? If you have struggled, what do you think would help? If you are a diagnosed autistic adult, what are your experiences with employment? Has diagnosis helped, not helped, or made no difference?

 

4 comments

  1. Apologies in advance, if I muddle this comment. I’m not sure the best way to structure it.

    First, I found your presentation of certain aspects of your story very beneficial for myself. I’ve been struggling with coming to terms with many of my more unusual experiences such as being quite indifferent to situations such as being homeless because its “the way it is” and instead focusing my attention on mathematical interests to pass time. Or how I managed to, despite being bright, walk around for decades with most of my attention directed toward my inner intellectual world resulting in very limited awareness. Let alone, not understanding why I’ve in the last few years I’ve gradually become more aware of external details and my (functioning in the world) self. These are things I’ve been having trouble even understanding. And I haven’t found a bit of helpful literature on the topic of withdrawal or such awareness as related to it. So your mention of it even slightly is a bit comforting.

    Second, I want to point out that your mention of lack of support for adults is a vital topic in dire need of being addressed. And, as you mentioned, resources and support for undiagnosed adults is especially important. (Or at least, I find it important given my circumstances.) But maybe not getting support from existing groups in your endeavors is perhaps a good thing as the existing methods of advocacy seem limited to only certain circumstantial models and there are clearly older generations and other groups facing a different set of problems than what existing resources can provide help for. I guess what I’m trying to say is; there is a need, but no supply and perhaps that’s because there is no understanding. I think its hard for people to understand or imagine what an undiagnosed life can entail.

    Advocacy is a good thing. Awareness is a good thing. But acceptance, inclusion and even personal understanding has largely been unapproached. One of the biggest things I’ve noticed with reading blogs by self-diagnosed autistics is a sore need for a sense of community that in itself would be therapeutic. But I’ve not found (in my area) any support groups or meet ups for undiagnosed adults who, for whatever reason, can’t presently obtain a diagnosis. It seems they are just left to be islands unto themselves without any knowledge as to how to successfully navigate certain things that everyone is just supposed to know how to do.

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    • Thank you for your comment. I have often talked at length about being indifferent and think this is probably a common experience. I am frequently indifferent to things. I have never been homeless, but as mentioned have lived in conditions others see as unfavourable. Being indifferent is one thing I talk about as being a way I can sometimes negatively impact on the world around me. For example, when my first wife told me she didn’t feel our relationship was working and we need to split up, I said “are you sure that is what you want?” As soon as she said it was I left and never looked back. I was very matter of fact about it. I carried on with my life. I have seen people hurt themselves, but walked passed because they never asked for help so I didn’t realise they wanted help, I have had people bully me and push me over, and I just stand up and carry on walking and am indifferent to what they are doing, so they get bored and stop.
      For myself, I can be so absorbed in my own internal world I can not wash, not eat, not tidy up etc., hours (or days when I wasn’t in a relationship) could pass without me moving or engaging in anything other than my thoughts. When single I could just not bother with work, I would be indifferent to the idea of it, I would be indifferent to managers and their views and orders, I would live in my own bubble. I don’t see people as having authority over me in any setting and don’t care what they think of me. If I talk in front of a judge I am me, I am not ‘on my best behaviour’ or ‘more polite’ I am as polite as I normally am, I talk the same as I normally talk. I am just me. The same when interviewed by the police or in any other setting.
      I have had to teach myself to be more externally focused and often talk about how I am always fighting the urge to shut down from the world and just focus on my inner world. I have regularly commented that if I was single I wouldn’t be writing books, doing YouTube, engaging with people, I would want to live in a tent in the woods away from everyone and what will be will be. I speak at more length about all these things in my autobiography ‘Look Into My Eyes’ and in various videos I’ve shared on YouTube.
      In relation to lack of support for adults, especially undiagnosed adults. I’ve tried to raise this a lot. Every time I see posts by things like the National Autistic Society about how many autistic people are out of work and lack of support for autistic people, I raise that it is worse for the thousands of undiagnosed autistic people, many of whom don’t necessarily realise they are autistic, and many who think they might be don’t know how to seek diagnosis or perhaps even think about seeking diagnosis. One of the most important things for addressing this is to raise awareness so that employers know signs that an employee may be autistic (or whoever in other sectors, like adult eduction, council workers – benefits advisors, housing workers, etc, and other professionals), and enough awareness that those undiagnosed adults and their friends and families can perhaps recognise the person might be autistic. This would increase the chances of getting support.
      For years I was against seeking a diagnosis and seeing if I was autistic or not. My view was that we should all be treated as individuals, so people should help to address my personal needs, employers should help me to do the best I can at my job whether I have a label or not. As you mention, it needs to really be acceptance, inclusion and personal understanding, then the diagnosis wouldn’t matter, we would all be treated as individuals.
      My advice to undiagnosed adults would be that if they think they may be autistic, go for an assessment to find out. At least you would then know for sure. You don’t have to tell everyone you are autistic. You can apply for jobs and not say it if you didn’t want to, but it means that you can now know where to start learning about yourself and what skills you are perhaps missing without knowing you are missing them – because some things people learn instinctively growing up, but autistic people don’t, like reading non-verbal behaviours. This is something many autistic people don’t know and don’t know they don’t know, and non-autistic people don’t know to teach these to the person because they also don’t often realise the person doesn’t know. There is a documentary with an autistic adult who has trans-cranial magnetic stimulation which disrupts their brain making it so that for the first time they suddenly see that people have different facial expressions depending on what is going in inside them. He had never ‘seen’ this before, but now he has something he can focus on learning to help him understand others better. For me, this moment came when I discovered hypnosis (the study of communication skills) and within hypnosis lessons you get taught to ‘read’ non-verbal behaviours to know what is going on inside the client you are working with.
      I think someone self-diagnosing can help someone perhaps know a bit more about themselves, but if they are having any difficulties, like struggling with relationships, or work etc., then seeking official diagnosis will be more helpful. For most of my work time I thought I might be autistic but didn’t think of seeking diagnosis. I wish I had ideally been diagnosed as a child or teen, or had thought about it and known how to go for diagnosis as a young adult. It would have likely helped so much.
      I don’t know what the process is in other countries, but in the UK if an adult is struggling and thinks they maybe autistic there isn’t any reason, other than that they don’t want the diagnosis for some reason, for them not to be able to have an autism assessment. It could turn out they aren’t autistic, this was something I was thinking about before I was told I’m autistic. I wondered what if they say I’m not autistic? My question would be then who do I go to to find out what is wrong with me then? The chances are they would have referred me back to my GP who would probably have referred me to a psychiatrist. I used to wonder whether I was a psychopath because of my responses to things and my often lack of care about things others seem to care about, but I know I’m not and during my autism assessment the psychologist said I wasn’t.
      If someone thinks they are autistic, but they don’t have a diagnosis and for some reason can’t obtain one, they can treat themselves as if they are, they can do research then around autism and learn as much as they can about what it means to be autistic, what the missing skills and abilities are (like social communication skills etc) and learn these. The only difference between someone undiagnosed and diagnosed is the label, the person is the same, with the same challenges. Since diagnosis I’ve had no organisation to my knowledge available to help me.
      I have written books like my Asperger’s Syndrome: Tips and Strategies book, which if someone thought they were autistic but they didn’t have a diagnosis, that makes no difference, they can still read the tips for autistic people and read about non-verbal behaviour, social tips, etc, or any other book for autistic people about how they can help themselves and practice these things, just as they would with a label. I don’t think it is that they are left without any knowledge to successfully navigate things others just know how to do, there is the information out there that they can access with or without a label, because the label is just a label. If I said to any of those people ‘you are autistic’ and gave them the label, nothing has changed, it is perhaps just official now. I have just told them what they already knew.
      The challenge is that undiagnosed autistic adults can’t access certain support or benefits because they don’t have an official piece of paper stating they are autistic. They also may not be able to access occupational health support in work, or other support in work or into work which is designed to help disabled people into work, and if they face discrimination or bullying they can’t necessarily fight this (like my experience) because their is nothing in law perhaps protecting them. Whereas with a diagnosis they would be discriminated against for be disabled which means they can fight this and if they had to quit the job they could argue unfair dismissal etc…

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  2. My experience with awareness was curiously that I didn’t know my awareness was so limited until I became more aware. When around others and if it was obvious that something was wrong, I did care. But I wasn’t around others much and I generally miss everything except for the glaringly obvious. I can sometimes sense that something is off, but I have no idea what. Most of my indifference and unawareness that now baffles me was/is toward my own level of functioning and existence in not ideal living situations. Its as if I made a note of general things but then just carried on focusing on things I found interesting.

    I’m glad to read your statement about shutting down. I also find myself constantly fighting the urge to shut down, but I’m honestly half torn about it. I am quite partial to my inner world. Not to mention, I see a lot of value in it as its very useful for me in building up energy and thinking completely through things. I actually often do quite poorly with spontaneous verbal communication so it also allows me a chance to put words together.

    I think what hinders me from going for assessment is probably a fairly common problem here. One must first obtain money for a GP and then money for an assessment. One of the two local places here lists the assessment cost at just under $2000. That makes an assessment not even a possibility for those who can barely or can’t even provide housing for themselves. Then there are the overwhelming issues of phoning for appointments, providing information, communicating in an interview, filling out paper work, etc. And sometimes, as is for me, there is the added obstacle that there’s no one who knows the person to fill out the required observer’s questionnaire portion of assessment.

    The topic of employment and being able to earn decent enough wages plays right into the obstacle of even getting a diagnosis. I’d dare to guess that most of the undiagnosed adults fall into the lower income brackets for reasons that a diagnosis would reveal. But that’s just a guess.

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    • I agree, I didn’t know my awareness was limited until I became more aware and have obsessed about gaining more awareness. I talk about how this was a problem in school where teachers would say I should speak up when I don’t understand something, but I didn’t know I didn’t understand what I didn’t understand. I assumed I had understood. The same in workplaces. I would assume I understand things and only when I’m being told off would I realise I obviously hadn’t understood them, or when socialising (I do it very rarely, probably about once per year) I wouldn’t be aware necessarily of certain risks I might be putting myself at, for example, if there were people who were perhaps possibly dangerous, I wouldn’t have awareness of people flirting with me (talking of glaringly obvious – one woman was flirting and lowered her top a lot. the person I was with noticed, I didn’t. When I was told what they had done and asked why I hadn’t responded to this flirting I explained I hadn’t noticed and I asked the person whether she had done this, she told me she had and was annoyed I had ‘rejected’ her), I wouldn’t be aware that my behaviours or comments have annoyed someone or why people were annoyed. One reason for writing my autobiography was because it is difficult to explain the way my brain works. For example, most of my working career has been spent helping people. I have worked as a private psychological therapist since 2001, taught others how to be therapists since 2004, worked in care homes between 1998-2005, worked in family support work between 2007-2015, and so obviously I want the best for people and ‘care’ and feel if I might be able to help I should try, but I lack awareness at times of identifying when someone needs help. If someone falls over I don’t jump and run to their aid because nearly every instance that someone falls over they are actually physically okay, they just need to get themselves up. So I don’t instantly realise necessarily that the person might need or want help. I prefer people to ask for help so that it is clear they need help. I obviously hope they are okay, but I don’t feel a need to jump in and try to help when I have seen no clear evidence that they want or need the help.
      I don’t take personal responsibility for others. This has always been a strength. Many therapists have to work through in clinical supervisions disconnecting from clients. They perhaps find that they go home after work and are at the dinner table worrying about a client from the day who maybe said they were thinking of committing suicide. I wouldn’t do this, so other therapists work through in clinical supervision trying to let go and trying to accept that clients are responsible for themselves and their actions, the therapist isn’t, they are only responsible for their own actions. I don’t have this problem. I can deal with clients and largely once a session is finished I go home and don’t worry about the clients. If someone tells me they are suicidal I do what I can to best help them to hopefully not commit suicide, I follow procedures I should follow and then I go home. If they kill themselves that is their choice, not mine. I will have done everything in my power to try to help prevent that outcome and to try to make the person safe. I wouldn’t have been able to do more, so worrying about it or blaming myself etc wouldn’t achieve anything.
      So, for me my indifference isn’t a not caring, but trying to explain it when sometimes it can come across as uncaring and cold is difficult because there is thought processes behind it, there is whether I was aware of what someone else was aware of (like if someone fell over and my wife noticed they looked hurt and might need help, she would tell me and I would instantly go and check and if necessary I would help, but to me, I might have seen someone trip and think it looks like they are getting themselves back up and so not think any more of it, or I may not register it at all because I am in my own mind thinking about other things, etc).
      I also find ‘going inside’ helps me to know what to say and forming words etc, I struggle with spontaneous communication, but can talk endlessly about my interests. I have to think things through and do lots of mental rehearsal of situations and how they could go and how I would respond to the various ways something could go and need to go inside to build up energy and centre myself again.
      It is an advantage here in the UK that medical services are free at the point of use, so I can go to a GP and to the assessment etc without it costing money. As you mention – which is correct, many autistic people (diagnosed and undiagnosed) are unemployed or in low paying jobs. Many are very intelligent but many will not have a good education, especially if they have been undiagnosed, because they may have struggled in school or university. For example, people think I must have a degree and are surprised when they hear that I don’t have a degree. I have average to low grades in my high school qualifications, I struggled to complete exams fast enough (the best I did was in science where I took the exam and completed half the paper scoring C grade, so I retook it, completed about two-thirds of the paper and got a B grade, so had I managed to work fast enough to complete the whole paper I may have got an A or A* grade, I didn’t get a third chance to take the exam). I didn’t go on to further education, that was too scary and I was unsupported, etc…
      So it is difficult for many to come up with money to pay medical costs if they have to pay, which means those who really need the help the most have least access to the help. I was lucky that I didn’t have to phone for the appointment. I had to go to the GP and they made the referral. If I had to make the phone calls I probably wouldn’t be diagnosed now unless I could find someone else to make the phone calls on my behalf because it takes me a lot to make phone calls if I ever do make the phone calls. Luckily the communicating in the interview isn’t too bad because I am asked questions about me and I know the answers about me and by then I have answered questions in the various questionnaires and spent weeks doing this and exploring myself, so I have examples of my behaviours I can give etc. You can also have a friend or someone help with the questionnaires and filling in paperwork etc.
      I was fortunate that my mum could come to the assessment with me for the part where they need to talk to someone who has known you since birth. I explained that my dad was dead and asked what would happen if my mum was dead as well? I don’t have a family doctor or religious leader etc who has known me my whole life. They said that the assessment would often take longer because they would have to explore more about my childhood, would ideally want me to show school reports and see if I can find other information to evidence that I had shown autistic traits since birth. They said if I didn’t have any evidence like school reports etc then they can still do the assessment but it comes down to them making more judgement about whether from what they have heard and observed they think I have evidenced that I have displayed being autistic my whole life.

      All the best
      Dan

      Liked by 1 person

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