It is ten years this year since The Autism Act 2009 was introduced. This week I am doing a series of blog posts about The Autism Act 2009 looking at what things were like before The Autism Act 2009 and what things are like ten years on. I am sharing from my own personal experiences as an autistic adult who received and adult autism diagnosis in 2015 and as a professional who has worked with autistic client’s since 1997 in a variety of settings. My experiences are all based on the local authority I live in, so I would be curious to discover whether others experiences from other local authorities is the same, worse or better.
The Autism Act 2009 guidance is divided into sections based on the 15 priorities outlined in the Think Autism Strategy, one of the sections is about employment for adults with autism.
8.2. Some people with autism will require support to get or keep a job. Yet adults with autism are currently significantly underrepresented in the labour market, which has a detrimental impact on their financial circumstances and social inclusion, as well as being a waste of skills and abilities. The Autism 2010 strategy and Think Autism included commitments aimed at increasing the number of adults with autism in work through the provision of guidance and training to employers and employment support services and ensuring adults with autism benefit from employment initiatives. The Department for Work and Pensions has since introduced the Work Programme which provides personalised back to work support for unemployed people, including disabled people. It has also established Work Choice and Access to Work,60 both of which help disabled people, including people with autism, find employment and stay in work.
In 2005 I was cycling to work when I was hit by a truck. Unfortunately, I came off worse. I ended up in hospital for a few weeks and then unable to work for perhaps a month more than this, and when I was back in work I was unable to do most of my job because of my injuries and was made redundant. At this point I was more capable than I was when I was younger and I had far more skills and experience but it still took me two years to get back into work.
There are many aspects of being autistic which make getting into work and holding down a job challenging, even being self-employed is challenging. I got my first job in a holiday camp as a teenager. I didn’t want to have to go to work, I wanted to stay in education, but my circumstances meant I didn’t have any choice but to apply for different jobs and try to get something and say yes to any job I was offered. This was the mid-1990’s. The role I had in the holiday camp was to work in retail catering in a food court. I had to clean and clear tables and serve customers, either serving them food or serving them on tills.
I didn’t have an autism diagnosis and had never heard of or thought about things like autism back then. I was fine with cleaning and clearing tables. This was a job other staff saw as the lowest job and the one no-one else seemed to want to do, but for me, I liked it, I liked just going from table to table, pushing chairs in, clearing away crockery and cutlery and cleaning the tables. Occasionally someone would come over and say that there were no knives or something and I would have to let someone know who would then refill the knives or whatever it happened to be, but I didn’t have much interaction with people. I struggled with the noise and how bright the venue was, but I was able to largely focus on being in my own mind and shut out external stimulation.
After a short period of time I was moved into one of the food venue areas where I had to work on till and had to serve customers. I found this terrifying. I didn’t know how much food I should give as a portion, I struggled to hear what people would tell me they wanted and retain this information while I put these things onto plates. At the till I worried that I would press the wrong button that would crash the till and break the till (in future jobs I still have this catastrophising, I think when using computer programmes in work that I will press the wrong button and will crash the entire network of that programme and wipe everything etc, using cashpoints or online banking I worry I’m going to wipe everyone’s bank details if I press the wrong button, in supermarkets I worry using self-service I may bring down all the tills if I press the wrong thing. My wife is forever telling me it won’t happen and isn’t possible), I struggled with working out change based on what customers gave me, even though the amount to give back to the customer was written on the till.
There was just so much going on that I couldn’t focus on what I had to do. I struggled to know the names of what customers were ordering and to then find the names on the till when I can’t even think what the name of different items are. It got worse if customers interacted with me, or worse still, if I was expected to interact back with them, and even worse if customers said things like ‘you have given me the wrong change’. When I would know I gave the right change. There seemed to be an arbitrary delusion that staff were expected to pretend to believe in that customers are always right, yet I knew of times they were wrong, so if I knew it was unlikely I had made an error with the change then I would stop the queue and would cash up the till. If the till was up then the customer was right, if the till was correct then I was right. This didn’t go down well when during the summer there could be 1,500 customers in the venue during the lunch time and a hold up of many minutes to cash up a till would upset a lot of people. It didn’t take long for management to decide that the best place for me was in the pot wash.
The pot wash was the ideal venue. The pot wash machine was noisy and the lights were still bright, but I could look down to avoid much of the light and the faster I worked the more time I could have the machine turned off, and with the machine off the room was much quieter than being in the main venue area with noisy staff and customers. Most of my time in the pot wash was spent alone just loading and unloading the giant dishwasher. I rarely had to interact with people.
I was fortunate doing this job that most of my time doing the job I had very good managers. There were deputy managers, section leaders and staff who I felt were bullies, but most of my time I could avoid them. Most of my time doing the job I did pretty much the same thing every day. I liked the routine, I liked the fact the job was active, I liked the fact the job was largely something I did on my own, but I didn’t like it when it would get to special weekends or around Christmas or another big holiday period because myself and other staff would be told that we had to do waiting. The thought of being a waiter would terrify me and I would just walk out (my default option to change and uncertainty is to just walk out and quit the job. The trouble is that this means it is easy to make yourself intentionally unemployed and then you can’t get benefits for a period of time) and not work on any day that that was the expectation on me. I was very honest about this. Some managers would negotiate for me to help in other pot washes or would agree to me doing tasks others are complaining that they don’t want to do, like polishing the cutlery.
At one point I didn’t like something and said to the manager of the venue that if that wasn’t changed so that I could just get on with my job like normal I am leaving. He said things are the way they are, and so I walked out. I didn’t think at all about the consequences, I didn’t know anything about the benefits system or even that there were such things. I just went home. At home, once my money ran out from my last pay I didn’t think anything off it, I just assumed that I would stay where I was and possibly at some point my landlord will tell me to leave due to not paying rent. I wasn’t eating because I had no money for food and hadn’t thought at all about how I might get food. Other than looking in newspapers I didn’t know how to go about getting a different job and didn’t think about doing this. I just sat at home with no plan of action and assumed if needed I would have to move to live in the woods. Fortunately my manager came round everyday shouting up the side of the building to my flat to get my attention to talk me into coming back to work. Eventually he was successful. I had been out of the job about four weeks and he agreed I can come back and just do my pot wash job like normal, so I did this.
When the holiday camp was open limited hours during the winter season I earned less each week than I had to pay in rent, so I was unable to pay my council tax, I didn’t have electricity, so I wouldn’t have hot water or heating, and I couldn’t afford to buy food, so I wouldn’t buy food. I would eat in work on my lunch break on the Friday, Saturday, Sunday and Monday and then wouldn’t eat until the next Friday. I just accepted things the way they were, I didn’t think about doing anything about my situation. When it got dark, I would sit in the dark at home until I fell asleep. When it was really cold there would be ice on the inside of the windows. I would drink cold water often, but for months this was my life. I would try to wash my clothes using just cold water, I couldn’t afford to buy soap or toothpaste or washing powder, or anything. When I got paid I would give all the money to my landlord and apologise for not being able to afford to pay all the rent, and would explain that currently it is winter season so the holiday camp is shut mid-week, but once it is open fully again I will pay my arrears (I was about £2 short every week). The landlord was okay with this, but it did mean I had no money for anything else once my rent was paid and that I ended up with county court judgements for unpaid council tax, which they took from my wages before I got my wages each week.
So, this was all long before The Autism Act 2009, but what kept me in the job was a very good, supportive manager. Eventually I ended up in a relationship. The person I was in a relationship with felt I shouldn’t be living as I was. With them I became aware of the job centres. When things in work significantly changed and there was no way around those changes I walked out again, but this time I knew about the job centre so I went and looked for another job and got a care job, starting my career in the care sector. During that job I struggled with aspects of the job, I had a relationship with the managers that was strained at times as I wouldn’t see them as being anything other than human and so would talk to them bluntly and honestly as I would anyone else, and this didn’t always go down well. I left my first care job when they were making changes I wasn’t happy with, I left my next care job due to getting sick and tired of discrimination and then left my third care job due to being hit by a truck and being laid off because I couldn’t do my roll.
I tried to get support from the job centre to find a job as quickly as I could but there was no support because I didn’t have a disability or hadn’t been out of work for over 18 months. I said I wanted to be in work as quickly as possible, so wouldn’t it make sense to help me do this, rather than say I can’t access support until I have been unemployed for 18 months.
After about six months of being unemployed a member of staff at the job centre felt that there was something different about me and that they would talk to RBLI, a service which helps those with disabilities to find work. They took me on and helped me over the next 18 months or so until I was in work, and then for about a year they did frequent follow up visits to me in my workplace to see that I am getting on fine in the job and to continue to support me where needed.
So, even before The Autism Act 2009 there were some services available, what there wasn’t though, was a broader understanding from most of the job centre staff, and they didn’t do things to facilitate the way autistic people process things. For example, I would turn up at 11am for my 11:25 appointment with the benefits advisor and frequently she would be running late. She wouldn’t tell me, or anyone this. She would get to 12pm having not yet seen me for my 11:25 appointment and would go on an hour lunch break, then return at 1pm and carry on seeing us. I once raised this issue and said if she is going to be over-running she should say she is running late and give a new time to come back to see her, not just leave us waiting. Her response was that I am unemployed, so it isn’t like I’ve got anything else I need to be doing, so I can wait and that if I walk off then it will go down as a no show and I can lose my benefits.
This was all before The Autism Act 2009, so I like to think things have changed now. I know there is more support for those diagnosed and identified as autistic, but I don’t know if there is support for those who are undiagnosed and perhaps don’t have anyone in their life to identify that perhaps they could be autistic?
During my time unemployed I had many jobs offered to me. I have always been reasonably good at interviews, I just learned what you are supposed to do in interviews and then follow this process. My problem was after the interview. I was offered a sales job in a shop, but posted a letter through the door of the shop a few days before my first shift apologising that when it opens I won’t be able to do the job. It was too scary, the thought of using tills, of interacting with customers, etc. I was offered a tele-sales job, I arrived for the first day, walked into the entrance, and in seconds I turned around and walked out again without talking to anyone. There was bright strip lights over the desks, it was noisy and chaotic with all the talking from rows of staff who were virtually shoulder to shoulder and I struggle with using telephones, I had hoped I would magically just overcome this on arrival at the job, but it was as scary to me as it had always been. I was offered a job for a domestic violence charity linked to the NHS. I didn’t meet the criteria for the advertised job so they created a job especially for me and said that I was the first male they had ever thought of hiring, they had never thought about a male doing the role until they interviewed me and I convinced them of the importance of male domestic abuse workers. On my second day I told the manager that I can’t do this, and I quit. It was a small office with a handful of staff, but I felt very exposed in the office. I was expected to talk on the telephone, take calls from victims of domestic abuse, make phone calls to professionals etc, and to walk around the hospital to talk to different departments etc and be very flexible with my working. I was told that if someone phoned five minutes before my shift was due to end I would have to stay until I have dealt with the caller. In two years of unemployment I applied for just two jobs I really wanted to do, both of these turned me down. One was a local homeless charity working in a homeless shelter, the other was working for what was the Sussex Autistic Society (which no longer exists due to lack of funding). All the other jobs were just me applying for everything I could regardless of how I felt about the job, just because I needed work.
Each time this impacted on my benefits and I had to have another assessment. It was one of these re-assessments which led to the benefits person who was doing the assessment for about the third time with me in the space of six months or so that led to them referring me to RBLI, because clearly I was saying ‘I walked out because it was too noisy and overwhelming’, ‘I walked out because I was terrified of using the tills’, etc… Each time they didn’t stop my benefits for a period of time like they were supposed to do, they just re-instated my benefits, and then after six months, they got me support from RBLI who on paper I didn’t meet the criteria of because I didn’t have a disability.
So, my reason for sharing this is to show some of the struggles with trying to get and hold down a job and where timely support is required. If I wasn’t in a relationship I wouldn’t think about many of the consequences because I wouldn’t have anyone else but myself to think about, just like when I was in the holiday camp, yet when being unemployed impacts on a loved one, I go outside of my comfort zone for them, but not everyone will do this, and not everyone will be in a relationship. If I was single when I lost my job following being ran over I would have let whatever happens happen and would fully expect to become homeless and live in the woods. I wouldn’t have done things which make me feel very uncomfortable.
In 2015 I lost my most recent job, this is obviously since The Autism Act 2009 came in and I received my autism diagnosis a few days after my final shift. Because I am in a relationship and my wife works full-time I was only going to be able to claim Job Seekers Allowance for six months, after that time it changes to being based on income and as my wife works I wouldn’t be eligible for that. I decided to just set up self-employed. Ideally I would want to have an employer, I would want to receive a regular wage each month, have someone telling me what I need to do and when by, and have a fixed routine of working hours etc. There are many aspects to being self-employed I dislike, as well as some things about my current situation I do like.
Before my last work day I had spoken with benefits advisors, but other than being told about claiming contribution based jobseekers allowance, I didn’t find out about any other benefits I could claim or any other support I could get. It was only a couple of weeks ago when I happened to read in a local newspaper about an autism support group for adults based out of Littlehampton (a local town) and I wondered how I had never heard of them given that until 2015 I was working with high level social services cases based out of Littlehampton, with some of the adults being autistic and some of the children being autistic. The article was about the organisation being saved for a bit more time by securing continued local authority funding. I was sat at my computer and couldn’t remember exactly what the organisation was called but wanted to check it out. I couldn’t find it anywhere from a Google search, I had to wait until I found the article in the local paper again to search directly for it, and found very minimal presence online and thought, if they are struggling to hang on to funding and I didn’t know about them and I was working as a professional within social care until 2015 and attending all the multi-agency meetings etc, and on learning about them I still struggled to find them on Google searching for the support, then what hope do others have of finding them.
This has been part of my challenge, that despite The Autism Act 2009 being in for over a decade, my experience is that there is increased awareness about autism but not about what services are available or logical and easy to find information. In the last month or so the local authority website has improved. I also notice that there are now a few different autism courses available on the local authorities training gateway for staff to take about autism in children and adults ranging from a short online course to longer classroom tuition courses. What would be great would be if this was made compulsory for all staff to have to attend.
Some of the challenges I face are assumptions people make about what I can do. Because I can come across as assertive and confident people don’t always seem to realise that I struggle with things. For example, as a self-employed person who has spent since 2015 unsuccessfully trying to make a career out of raising autism awareness, wanting to give talks about autism etc, people always say ‘if you telephone this person, they may have some contacts for people who would like you to hold talks/workshops etc for them’. But one of my issues is that I really struggle with making telephone calls. It can take me months if at all to make a phone call, and if I do make the telephone call, having finally psyched myself up for it and I get an answer phone message, or I get told the person I need to speak to isn’t available can I call back etc, I won’t. It was very difficult to make that call the first time, I am very unlikely to try it again.
I get told ‘why don’t you set up your own talks/workshops etc?’. Again, I have the same problem. I struggle with the interacting with people part. I can turn up, give a talk or teach, answer questions and then leave. But I struggle to organise venues, sort out promotion, interact with people, make relevant telephone calls, travel to places, and stay places, etc and I struggle to be the sole person running something, I like to have someone else with me supporting me who is happy to talk to people, who can run errands for me where I don’t feel I can do it myself. I try to do things despite the challenges I feel, but, like most people, I frequently get rejected and each rejection makes me feel increasingly that trying wasn’t worth it when the outcome was to get rejected any way. This is why I no longer approach charities and organisations to try to link up with them to hold talks etc, because I have spent years being rejected by autism charities etc or not getting any response from them (so no email replies, not managing to get through to who I need to speak to on the telephone, not getting any replies of support or guidance on social media, so I stopped trying because each try is draining and has taken weeks to psych myself up to do.
I am currently in a position where it would be great to be employed, but like I had when I was unemployed following being ran over, the question is always what would I want to do? I don’t think there is a job for me, and I am sure other autistic people feel the same.
One question I asked when I was unemployed before was ‘what could I do?’
I wanted to sit with someone knowledgable and identify my skills and identify what I like doing or how I would like to spend my time and then see if there are any jobs which match that. I always point out that if pot washing paid enough to live on I would probably do that, or if I could get a job out in nature every day I would do that (I don’t drive, so it would have to be something where I didn’t need to be a driver to get to work or for work).
If I was good at photography I would happily be a wildlife photographer sitting for days on end waiting to capture the perfect photograph and being paid for this.
I think The Autism Act 2009 has helped to create some funding for services and there are some services which adults can access that are out there now, but finding them can be a struggle and then there is a question about what help they can be in supporting autistic people and undiagnosed autistic people to gain and maintain employment. There is also staff training now within local authorities, but without it being compulsory you don’t have the relevant awareness among managers, and as autism training isn’t compulsory for all businesses you don’t have the support in most jobs from management where they will ensure your work environment is set up appropriately, where they have looked at your needs and strengths. Very few workplaces I have been in are autism-friendly.
In my last job I became depressed and suicidal solely because of workplace issues. I wanted occupational health support, but without a disability or illness I couldn’t get the support. I was very vocal about changes which were being made to my working conditions and how these changes would significantly negatively impact on my ability to do my job. I would like to see occupational health support people who display autistic traits even without a diagnosis, and in reality feel they should support anyone who is struggling. If I had been able to have an occupational health assessment, they would have identified what workplace conditions I required and would have been able to state that those are the conditions I need to have made for me (in my case, this would be the conditions I had already before being told things were changing).
I also have some autism books I have written about my experiences as an autistic person, my professional experience and knowledge and tips and strategies for autistic people, their friends, family, employers, teachers, etc – ‘Look Into My Eyes’ autobiography, ‘Asperger’s Syndrome: Tips & Strategies’ and ‘An Autistic Perspective: Death, Dying & Loss’. If you are interested, you can find out more about them here.