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 training for staff who provide services to adults with autism. The focus is on staff within the NHS and local authority staff. It explains that many public services staff provide services to autistic adults, so the training should be for all staff, not just staff in specific roles, but there should be particular focus on training for staff working in health and social care.
1.1. Improving training around autism is at the heart of the autism strategy for all public service staff but particularly for those working in health and social care. This includes not only general autism awareness training, but also different levels of specialist training for staff in a range of roles, where this is needed to fulfil their responsibilities and for those who wish to develop their knowledge of autism.
In my roles I have had varying degrees of autism training but none of it was since The Autism Act 2009 came in. I worked for the local authority in a social care role from 2007 to 2012 and autism was a hot topic among the families I worked with, a large number of them felt that their children/teens were autistic and they struggled to get their children seen by a specialist. As a practitioner working for the local authority I definitely felt that there was a shortage of training and awareness around autism for colleagues of mine within social care settings and for wider colleagues who worked in other departments.
As an undiagnosed autistic individual during this role I suspected I was probably autistic and my manager at the time suspected I was autistic. On our first shift together she said to me that she thinks I have Asperger’s and is it okay if she treats me as such because she feels that it would help our working relationship and help get the best out of me in the role. I was obviously okay with this as someone, especially a manager who had worked for many years within social care and family support work was demonstrating that they recognised in me something I suspected about myself but at that point hadn’t spoken openly about suspecting.
In 2012 I work for a local council managing a team of family support workers and offering family support myself. There was no training I was aware of offered to council staff and no training offered to myself or other colleagues around working with autistic client’s. There was the option for individual staff to request training they wanted to attend, so some staff could choose to take training learning more about autism, but often the training staff would request would be about working with autistic children.
Because of my previous manager and her openness with me about how she thought I was likely autistic I started saying that I think I could be autistic if asked when describing myself. For years I had described myself to people soon after meeting them, if it seemed like it would be sensible to do so because I was used to people thinking I was doing things on purpose to annoy them or they would start talking about me behind my back about how rude I am or how weird I am. So, if I was going to be working with a team of other staff, as I have conversations with them about myself I would tell them that I don’t think of saying ‘good morning’ or ‘good bye’, that I don’t think of asking ‘how are you?’, that I am blunt and don’t realise that people are going to take offence with me just being direct and honest, and this had helped me to get on better in workplaces. Unfortunately this has normally only helped in relation to staff I have managed and staff on the same level as me. Often with managers I have been treated like I am just trying to make excuses for not behaving as they would like.
I started telling people about myself in this way because of work experiences. In a children’s home I was working in apparently staff complained to the directors of the company about me not saying ‘good morning’ or ‘good bye’ etc, and I was told I would get sacked if I didn’t start saying and doing these things. I struggled to remember to do these things and kept being threatened and warned. I was a member of the union Unison, so I approached them for help. At this point I thought I often behaved similar to many of the children we had in our care, but I wasn’t at a place where I was thinking that means I might be autistic. Unison told me that I am clearly being discriminated against, but that there is nothing they can do to help, that I don’t have a disability, I am not in a minority group and I am not being discriminated against for defending someone with a disability, a female or a minority group. My conclusion was that being part of a union was pointless, if the one time I need their help they say there is nothing they can do to help me, then I may as well stop paying to be a member.
I left that job and in my next job I was open with colleagues about my actions to try to prevent a recurrence of the above experience, but I didn’t speak to the managers saying about my way of being because situations to do so didn’t really come up, so I got on fine with staff, but would have managers pulling me up on things which are annoying them, like me mimicking certain words or phrases people say, or copying bird whistles I hear, or suddenly tapping, or being direct, etc. At one point a manager raised all this with me in a supervision and fortunately was understanding when I said I couldn’t help these things and didn’t even know I was doing them until they were pointed out. He told me not to do them again, but he at least appeared to accept what I said. I never said at that point either that I thought I might be autistic and didn’t even give that label to myself in my mind. In this role I also got ran over while cycling to work one morning and in hospital my wife (who was my girlfriend at the time) was present and my work colleagues came to visit me. They wondered who Abbie was. I said she was my girlfriend. They said they didn’t realise I was even in a relationship, despite having worked with me for about a year. This annoyed Abbie, the fact that it hadn’t crossed my mind to mention her in work. Form my perspective they had never asked, so why would I have mentioned her?
It was these experiences though, which built to me actively telling people, this is who I am, these are behaviours I am likely to do, I don’t mean any malice, etc., this is what behaviours from you will best help me, tell me if you want to talk to me because I won’t necessarily pick up that you want to talk with me about something, etc… And I would say I have a wife etc. I would be clear about what I struggle to do (like using telephones, being around lots of people etc) and what kind of work environment will get the best out of me and what work environment I would struggle with. I didn’t say I was likely autistic, even as I started thinking it myself until I had a manager who thought this having only interviewed me to hire me, and worked with me on my first day. This gave me the confidence, if asked, to say I think I could be autistic.
When I worked for the local council from 2012 until I left in 2015, initially my previous manager had changed jobs to a role that meant she hired me into my new post (I obviously applied to work for her again, rather than stay where I was under new management). She knew what would get the best out of me, she placed me at a desk in the corner of the office with high desk dividers and no overhead strip light, instead I had a window letting in some natural light. In 2014, unfortunately everything changed. I had two managers, but the manager who seemed to understand me took on the lead role of managing me. When things changed that manager was no longer managing me at all and the other manager became my sole manager. They didn’t like me being in the corner of the room, they didn’t like answers I gave in supervisions and performance development reviews, they didn’t like my lack of apparent understanding of what I should report to them and what was unnecessary to report to them in terms of things like completing tasks I have been set.
I tried to be open and honest about myself with them. I wanted them to communicate clearer and not assume that I would understand things or the meaning of things. For example, in a yearly performance development review there was a question “what have you achieved over the last year?” I wrote what I have achieved over the last year in work. During the review my manager asked if I was ‘taking the piss?’ because I had answered everything wrong and clearly not taken this performance development review seriously and had just rushed through it. I explained I spent hours filling it in and thinking about my answers. I asked how I was supposed to answer these questions? I was told that as a manager of a team of staff I should answer about my team, not just myself, so that first question I should have said what the team had achieved over the last year. I explained that that wasn’t what the question asked and this has never been raised when I have previously filled out performance development reviews. In a supervision I was asked if I have mental problems because of the way I respond to things. I explained that I think I might be autistic. I kept trying to be clear about my needs, but never got anywhere. I just became increasingly depressed and suicidal.
This is well after The Autism Act 2009. My manager must not have had training around autism and autistic adults. I never saw signs of training being offered or taken up and if they had had training they hadn’t taken any of it into consideration.
This has been my experience, that The Autism Act 2009 may suggest that staff should have training, but when autism training is offered it is usually non-mandatory training for social care staff and around autism in children, not adults. I haven’t worked for the local authority or council since 2015, so it may have improved over the last few years, but by 2015 nothing had come in within the area I work. I felt that local authority housing staff, receptionists, benefits and council tax advisors etc, should all learn about autistic adults and autistic children with some people in different departments taking further training so that all staff have someone in their department who they can talk to if they want to talk to a more knowledgeable person. Just like my view was that all staff should receive safeguarding training. I was involved in teaching safeguarding to many local authority colleagues, so this was starting to happen in the year before I left, staff who worked within social care roles were attending Mind mental health training, but there still wasn’t any autism training being rolled out.
Hopefully this has changed and improved over the last few years? I would be curious to hear experiences of those from other parts of the UK about whether public service staff in your area receive autism training?
I saw this as a gap in my area and so through 2015 to 2018 I tried to offer autism training myself. I gave a few talks locally for parents, but had no interest from local businesses, schools or the local authority etc., or from autism charities. I was offering to talk for free with just any expenses incurred covered. Although some of my talks were engaged with by parents, my focus was really on trying to engage people around understanding autism in adults and how you can best support those adults and get the best from them.
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.