Blog contributed by Philip Nicholson
Employment Specialist at Employment Futures

As part of Autism Acceptance Week I have been asked to write a blog post on receiving a late diagnosis of autism.

The first thing I’d like to point out is that autism is a lifelong condition which means that I have been autistic from birth and not just from when I was diagnosed. So, I will start by writing a bit about what it was like being an undiagnosed autistic person before talking about getting my diagnosis and my life afterwards. 

I was born in the 1980s when autism was not well understood. When I started school Rainman had not been released so there was not even that stereotype. There was a bunch of stuff that I did differently as a kid that probably would be picked up on today leading to me getting a diagnosis earlier. I’ve thought about this a lot since being diagnosed and I really don’t know whether it would have been a good thing or not. In primary school it was picked up on and I was given an IQ test and a hearing test, I passed them so was told that I just needed to pay attention. From then on, I knew I was different from most of the other kids in school and they knew I was different too. There was just no name for it and at times I did wonder if there was something I could be diagnosed with but the thought of autism never crossed my mind as I knew next to nothing about it.

When I finished school I went to university before working in Italy and Poland where I taught English for a couple of years. I returned to the UK, still working as an English teacher before doing a bunch of other stuff. I did a Master’s degree, worked at a Further Education college, did voluntary work with disabled children and also worked supporting asylum seekers. I began to feel that I was kind of drifting through things in life and that I could have been progressing more. So, I thought a good way to bring together my different experiences would be to train as a social worker. I got onto a two-year course, which would lead to me being a qualified social worker. I was always pretty good at studying so enjoyed the course and learnt a lot but then this is the bit which led to my diagnosis.

At this point I knew more about autism through my past work and had started working at NEAS supporting children outside of school and read quite a bit of academic literature about autism on my course. I recognised a lot of autistic traits in myself but also thought about ways that I was not autistic. I felt that I had a lot of empathy for people and that was why I was motivated to work in areas where I could support others and this didn’t fit with what I read from Simon Baron Cohen about theory of mind. I do not need routine and like doing things spontaneously. Also I had kept hearing that "everyone is a bit autistic" and "on the spectrum somewhere", so thought that was probably the case for me (hint: that’s not how it works).

Anyway, on my final placement I was working in child protection and started struggling with managing everything. When asked about why I was having problems I struggled to give an answer because I knew I could do each thing individually, like calling people, arranging appointments, building a relationship with a service user, doing an assessment, writing up the reports, etc. It was managing the combination of everything in the pressured environment of child protection that I couldn’t do. I didn’t finish that placement and never qualified as a social worker. That knocked my confidence a lot and I had no idea what I would do instead. Having the job at NEAS at that time was a really good thing for me. I went to a counsellor for support and tried to understand why I had found that placement so difficult and my counsellor suggested that I might be autistic and that was the nudge I needed. I thought that I might be autistic but also thought of the ways I didn’t think I was, so I was genuinely unsure if I would be diagnosed or not. Thinking about ways that you are not autistic is not really helpful as the diagnosis process just looks at ways someone meets the criteria not the ways they don’t. So if someone says "you can’t be autistic because...", then they are wrong.

To get my diagnosis I went to my GP, said why I thought I was autistic and how a diagnosis could help me and they the referred me to the adult mental health team. Autism isn’t a mental health condition but there isn’t really anywhere else for it to sit in the NHS. So I saw a CPN and they took my case to a multi-disciplinary panel who then referred me for an autism assessment. I was told that I would be assessed in 12-18 months and it did take about year for me to get the assessment. The assessment took about 4 hours and my parents were there to answer questions about my childhood. This was so the professionals could see that my autistic traits were lifelong and other possibilities could be ruled out. This can be a barrier for people getting a diagnosis if, for example, they don’t have contact with their parents.

The assessment consisted of lots of questions, moving puzzle pieces around, and talking about picture books. I knew the reasons for this and that the assessment had been designed to be used for children and there is not one specifically used for adults. The Speech and language therapist (SALT) who conducted the assessment also kept apologising for focussing on deficits, as that is what is needed to meet the diagnostic criteria. Once the assessment was over the SALT said that it was very likely that I was autistic. At that point I was relieved, firstly that the intensive process was over and secondly that I finally had some understanding about why I was different and had had difficulty with different things.

The thing that helped me most with getting the assessment was just that it helped me understand myself a bit better. I reflected back on the times when I was a teenager and had wanted a name for why I was different. Then I also thought about all the stuff I had done, like teaching abroad, and wondered if I would have done that if I had grown up with professionals talking about my deficits and telling me that I couldn’t do things like that. On the other hand could I have thrived more in those situations with the right support? That is the thing with labels - they can give you stigma and misunderstanding, or understanding and support, and I have no way of knowing how things would have been different with an earlier diagnosis. The diagnosis helped me to be a bit easier on myself in understanding the things I found difficult and to talk to people about that.

At first I only told a few people about my diagnosis because I felt that I was in a better place personally and was still processing what my diagnosis meant to me. In terms of getting support there really wasn’t much out there for me. I took up the opportunity for some post-diagnosis sessions which I got about a year after I was diagnosed and this helped me identify and think about a few traits but did not give me more insight into autism than I already had. The thing that has helped me most has been reading and watching stuff by other autistic people online as this explains ideas and lived experience from an autistic point of view. As well as helping me understand specific things about myself, theories such as double empathy and monotropism make more sense to me about autism generally, rather than ideas like the theory of mind deficit.

One thing that I have always struggled with is job interviews, so being able to disclose that I am autistic helps me by not feeling the need to mask so much and to be able to ask for reasonable adjustments. Otherwise I have not needed to ask for specific support or reasonable adjustments at work but I have taken stock of what work I want to do and what my strengths are. It was only when I was supporting autistic children, and felt that it would help them by sharing that I was autistic too, that I started talking about being autistic at work. I think it does help to see other autistic people doing well but also recognising that some things are difficult and that this will be different for everyone. As I have seen this in others and been inspired by other autistic people myself I have grown in confidence in talking about being autistic. I am glad that I have finally received a diagnosis as it has helped me understand myself and to talk about things I find difficult and to ask for support.

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