Support Required for Undiagnosed Autistic Adults

There are a large number of undiagnosed autistic adults, some of these will have taken tests and attempted self diagnosis but not known how to or perhaps thought to seek official diagnosis (it can be daunting as the GP will be assertive and likely to bombard you with questions you need to know the answers to and under pressure it can be easy to leave the appointment without a referral and decide you will never try that again so it can be helpful to have support and take someone with you when you talk with the GP)

Some information relating to undiagnosed adults prevalence:

https://medicalxpress.com/news/2016-11-undiagnosed-adults-struggling-autism-shadows.html

https://www2.le.ac.uk/offices/press/press-releases/2011/may/2018most-adults-with-autism-go-undiagnosed2019-new-findings

There are estimated to be about 600,000 undiagnosed autistic adults in the UK, most unaware that they may have autism. This is based on the findings mentioned in the links above.

Looking at the information on diagnosed autistic adults via the National Autistic Society website:

“Seventy per cent of autistic adults say that they are not getting the help they need from social services. Seventy per cent of autistic adults also told us that with more support they would feel less isolated

At least one in three autistic adults are experiencing severe mental health difficulties due to a lack of support

Only 16% of autistic adults in the UK are in full-time paid employment, and only 32% are in some kind of paid work

Only 10% of autistic adults receive employment support but 53% say they want it”

So even among those with diagnosis the figures don’t look good, and among undiagnosed they are even less likely to get social services support, likely to feel isolated, likely to be experiencing mental health difficulties, a higher percentage are likely to be unemployed and even more are likely to be unsupported within employment. This is the situation I was in prior to my adult autism diagnosis. I couldn’t access occupational health support, when I was unemployed I couldn’t access back-to-work employement support.

Having an autism diagnosis has helped in many areas of my life, specifically around others understanding me and accepting me for who I am.

I always knew I was different to most others around me, I knew in school and I knew when I started work.

In my first job working in catering I couldn’t understand the idea that customers are always right – when they are often wrong and that you aren’t supposed to tell customers they are wrong. It didn’t take long for me to be placed back-of-house working in a pot wash where I rarely encountered customers.

I remember my manager introducing himself and offering his hand to shake. I didn’t realise that when someone puts their hand out it is for you to shake it in greeting. He asked why I wouldn’t shake his hand. I didn’t know but had to give an answer, so thought ‘why didn’t I shake his hand?’ and all I could think was that I don’t know him and don’t know whether I like him, so why would I want to shake his hand, that seems like something people who like each other probably do, so I told him ‘I don’t know you and don’t know whether I like you, so I’m not shaking your hand’

Others often saw me as unusual. Colleagues who got to know me when they worked with me in the past have said to me since my autism diagnosis that other colleagues and management often enquired about whether they had problems with me and that I was a bit odd.

I hadn’t heard of autism or Asperger’s when I was in my first job so I didn’t think ‘ah, maybe I have autism/Asperger’s’ I just thought something was wrong with me, that my brain had these glitches where it would make me respond in a way that was very different to other people.

While working in the pot wash – a job I would happily do for the rest of my life, I was content. Everything was predictable. But when asked to do roles interacting with others, especially customers I would go into meltdown. I would become very black-and-white in my responses and behaviours.

If I was asked to do something outside of my comfort zone I would just quit the job. I walked out of my first job three times, luckily I had an incredible manager who was calm and patient with me, he was very supportive and persistent. The first time I walked out was because I was being told I had to work in restaurants as a waiter, the second time was when changes were happening I wasn’t comfortable with, the third time was when I was told I had to do a completely different role to what I was used to.

The first two times I walked out it didn’t cross my mind that when you don’t have a job you can claim benefits – although I wouldn’t have been able to straightaway when I had quit the job. So I just walked out and went to the studio flat I lived in at the time and did nothing. I didn’t think to try to get another job, I didn’t think about where money was going to come from I just sat in my flat alone everyday and expected that eventually due to not paying my rent I would end up homeless and expected at that time that I would go and live in the woods. This thought didn’t bother me. I had no heating, no electricity, no food, but I did have a persistent manager who kept turning up everyday and shouting up the side of the building to where my flat was – my bell didn’t work and it hadn’t crossed my mind to ask the landlord to fix it. Both times I eventually let my manager in and he negotiated with me what it would take to get me back into work.

The third time I was in a relationship so I had to think of someone other than myself, so when I walked out I knew I had to get another job. In those days all the jobs were on postcards around the walls of the job centre so I just looked at each postcard for a job that I thought I could do and then got the first one I found – which was working in homes for people with mental health difficulties.

When I became unemployed years later all the jobs were listed on the screens in the job centre and I struggled to find a job because there was a list of just added jobs but the rest you had to type in a search for which meant somehow you needed to know what you wanted to find before searching. Due to injuries from being ran over I wasn’t able to do the work I had been doing and I didn’t know what my skills would transfer to, so I didn’t know what to search for. I tried asking for help but was told that to get help you need to either have a disability or be unemployed for over 2 years. I didn’t want to be unemployed for over two years and I didn’t have a diagnosed disability. After about a year I luckily ended up with a really good benefits advisor and she agreed to arrange for me to have a meeting with someone from the team which helps those with disabilities and let them decide whether they can take me on or not.

I was frustrated that I was still unemployed and that I couldn’t seem to get any help. I had tried over that time to do jobs I applied for and was offered but each job I walked out on the first day. I walked out of a call centre job because it was too noisy, too chaotic and involved lots of talking on the telephone, I walked out of a job supporting people who are experiencing domestic abuse because there was too much I felt uncertain about, like having to navigate around a hospital, having to take phone calls, and I felt very exposed because of the layout of the office and I walked out of a job as a sales person in a shop a few days before my first shift because I couldn’t handle the pressure of knowing I was going to have to approach customers and pro-actively sell to them.

The person from the support team agreed to signing me up. They supported me getting a job and supported me when I started the job, and luckily the person who was my new manager said on our first shift together that they think I have Asperger’s is it okay if she treats me as if I do because this will probably help me and help our working relationship. This was a huge relief to me. For the first time there was very direct acknowledgement from someone that what I have thought to myself for a while is also what someone else thinks, and that they will help me in a way that will get the best out of me.

By this second time I was unemployed I had worked in adult mental health and some of the clients I had worked with had autism (although it isn’t a mental health condition) and I could relate to them and their experience of the world and challenges they faced. Then I spent around 5 years working with children and teens with challenging behaviour and many of the children and teens had autism. It was doing this work that I started to think I may have autism/Asperger’s. Many colleagues who worked closely with me used to joke about the similarities between me and the children/teens we were supporting. I used to laugh it off, but at the same time I started to wonder whether maybe I did have autism.

In one job I felt that I was facing discrimination for being different and often being outspoken if I didn’t agree with something. I was threatened with the sack for things like not saying ‘good morning’, ‘good bye’ etc., to staff. I approached a union I was a member of, they agreed with me that I was experiencing discrimination but because I am a white, British male and I don’t have a diagnosed disability there is nothing I can do about it and nothing they can do to support me in addressing the discrimination so I quit the job.

There are many things which I do that managers have pulled me up on often telling me I will face disciplinary action or the sack if I don’t stop doing certain behaviours – like not using reciprocal communication like hello, goodbye etc, or for copying words or phrases people say or sounds I hear, or whistling or making sounds I hear in my mind, or tapping things, or being blunt or honest with people, or refusing to do things because they make me too uncomfortable.

It wasn’t until I had lots of experience with working with people with autism that I started to think I may have autism. If I didn’t start doing care work I don’t know if or when I would have started to form a label for my differences and challenges and without having an idea that how I am may have a name I wouldn’t have sought help or diagnosis and I think this is the situation many undiagnosed autistic adults are in, that they feel they are different, they have challenges and are perhaps unemployed, but don’t know anything about autism and so don’t realise they may be autistic and what they can do to seek diagnosis and access support.

In one job I had a manager who made sure my environment was conducive to me doing my role to the best of my ability, but then had a different manager take over direct line management of me who felt I should do as I’m told and didn’t seem to want to work with me to ensure they got the best out of me. They wanted me to change my working environment despite the sensory challenges it meant I would face and the challenges with using the phone and with my ability to focus and do my role. Despite me being very clear with everyone about myself and what I found difficult and things I may say and do which could accidentally offend people (I used to start a job and just tell people everything because I didn’t want people to keep making judgements and I didn’t want to struggle or offend people), my manager didn’t take any of this on board and would give me instructions once and if I misunderstood them they would say I wasn’t taking my job seriously and not putting in effort and that I was doing it on purpose when in reality I would have done my best and put in as much effort as I could to complete tasks.

The challenge is that if you assume you understand something and have no reason to think you may have misunderstood what you were told you don’t think to ask for clarity or to say you didn’t understand. This was the same in school. My school reports often said ‘Daniel needs to ask when he doesn’t understand something’, except I wouldn’t have realised I hadn’t understood until I did the work and got told it was wrong and I had missed the point of what I was supposed to be doing.

With that manager I constantly felt attacked and put down. If I didn’t tell my manager I completed a task they would complain that I didn’t tell them, if I did tell them they would complain I don’t need to tell them everything I do, but wouldn’t make it clear which things I needed to tell them and which I didn’t.

In the end I became depressed and suicidal, and at that point I sought diagnosis because having a diagnosis was the only way I was going to be able to get occupational health support to ensure my work environment was conducive to me doing a good job.

I was lucky because I had helped families through the process of seeking diagnosis for their children so I knew what I would be faced with and that I needed to be prepared for the meeting with the GP with clear evidence of why I think I may be autistic. Despite this I felt that the GP appointment was an attack on me like they didn’t believe me and didn’t want to make the referral. Initially they didn’t make the referral despite saying they would, and I got contacted by a counselling service offering me counselling. I explained to them that I didn’t need the counselling I went to the GP for an ASD assessment referral. So I had to go back to the GP and go through the same again, this time they made a referral. From this referral to diagnosis took about 9 or 10 months.

If I was an undiagnosed autistic adult who didn’t know the system and perhaps hadn’t heard of autism I probably wouldn’t have thought to seek diagnosis, I wouldn’t have thought I had autism unless someone who knew me started suggesting it, and if I was in a similar work situation I would probably have gone to a GP saying I was depressed and unless the counsellor I ended up seeing (assuming I ended up seeing a counsellor) knew about autism and recognised the signs I probably never would have ended up with a diagnosis and would have continued to struggle in each workplace.

I was lucky, I have ended up in relationships where to maintain the relationship you have to learn to focus on the other person and to handle some of the uncertainty of things rather than run away and hide and isolate yourself. I have had a few good managers who, despite not having a diagnosis where very supportive of me and my individual traits, obviously a supportive wife, and I have stumbled into a career where I learned about autism and so recognised I may be autistic and I knew what I needed to do when approaching a GP about making an ASD referral.

I have also learned and improved over the years from feedback from people. For example, I did a job where almost a year into the job I was ran over, my work colleagues visited me in hospital and my wife visited me. My wife introduced herself and my work colleagues said they didn’t know I was in a relationship. My wife was annoyed by this, but it hadn’t crossed my mind to talk about my wife in work. I had no reason to think anyone would be interested in my personal life and no-one had asked me whether I was in a relationship or not, so it never came up. Since then when I met new work colleagues I would say ‘I’m Dan, I have a wife, I like hypnosis and will talk about it a lot, I will probably accidentally offend you by being honest if asked questions, I never mean to offend so if I say or do anything that annoys you or offends you just tell me so that I can address it, I like to be alone a lot and so will sit on my own with headphones in and reading, I’m just doing this because I find it peaceful and calm and I don’t really like socialising…etc’

Dan Jones is author of autism books including ‘Look Into My Eyes‘ and ‘Asperger’s Syndrome: Tips & Strategies‘ and has over 20 years professional experience as well as being autistic.

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