Diagnosis Story 11: University gave me roadblocks

Today’s story comes from 37 year-old Mark in the U.K. After a encountering many obstacles he finally found the ‘missing link’ and was able go back to university to prove that someone with ASD can be an asset to the nursing profession.

“My experience so far at university this time is very positive, very different to the times before. I feel like a lot of people are rooting for me”

Picture 16-Mark-cropped
My special interests are retro Computing (building the hardware and discovering the applications and games from 1980s – early 2000s computers), as well as transport and city exploration (London underground map behind me!)

Mark’s Story – Background

I’ve got through occupation training and adult college qualifications okay, but
university has given me roadblocks despite approaching from various angles and getting diagnosis of Dyspraxia along the way. I always found myself more exhausted than my peers at the end of every work or study day, and could not explain this with a Dyspraxia diagnosis.

Diagnosis Story

At 25 I changed career from computing to health, because I had become so skilled in a certain area that I was working in isolation, and re-evaluated to conclude I wanted to do something with, and for the benefit of, other people. I had worked as a dental assistant and support worker successfully for several years and did my college course during that time, but when I tried to study dental hygiene I began to struggle with understanding context and my assignments would come back marked as having little relation to the question that was set. I was recommended to have a Dyslexia assessment which I had, but the result was a Dyspraxia diagnosis, which has implications in physical movement and troubled the university. Things fell apart at that point which meant a lot of hard work went to waste. In both roles I had worked with individuals who have learning (intellectual) disabilities (UK official term), and I found that I was managing to understand the needs that they were communicating to me, and I was generally successful in communicating with these individuals as well.

Some support work in a support living setting confirmed this for me so I took on a Nursing degree in the Learning disabilities field. I enjoyed the course very much, but had similar struggles with assignments and exams not answering the question which confused me, and then on workplace placement which are part of the course, questions were often thrown up by mentors about why I couldn’t understand this, or why I wasn’t doing that, it was a simple task, and why wasn’t I doing any written or organisation work outside of office hours. I just knew that I felt I was always on heightened alert in the workplace, and always exhausted as soon as I got home in the evening – to the point of crying sometimes because nobody understood how tired I was. I had been to a professionals training day on ASD awareness as part of a placement. I took side notes, and found that about 70% of the signs to be aware of seemed to apply to me.

This sowed a seed for me to find out more. Nobody at the university wanted to categorically say that this should lead to an assessment and that they would support me. Ultimately this university course broke down as the impact of the exhaustion and heightened effort cycle became too much. I had also had a long-term relationship break down just prior to starting this course, which had also left me with questions because I had felt very out of control and had to leave for the sake of safety to the other parties. During that summer I had approached my GP and requested referral for an ASD diagnosis. Unfortunately, this took 6 months to happen, and in the meantime, having tried to rectify things with the university, taken a remedial placement which had not worked out due to some skills not being achievable in that setting, and unsuccessfully looked for employment, I received a letter from the university confirming that I had failed to progress on the course 2 days before Christmas day. I could not bring myself to tell the family at that time due to feeling shame, and from that point I sunk into a mental health crisis that only began to recede when I got an appointment date for my ASD assessment.

The process of diagnosis was that I took the notes I had taken on the professionals ASD training day with me to my GP, and specifically asked for an assessment referral. He duly referred me to the mental health service for the assessment. About three weeks after the referral I was asked by the service to come and do a quick assessment for suitability where I completed a few checklist-style pages with a member of staff. This gave me hope that things would then proceed quickly. Unfortunately, this was not the case and another 5 months passed before I heard from the service again, despite constant telephone calls requesting updates from me. Despite not being at university any more I was luckily living in the same address – I would have had to start the whole process again if I had moved away due to the way that NHS funding works.

When the letter for the assessment did finally arrive, the appointment was not far away, and it asked for a parent or somebody who knows me well to attend with me to give them a broader picture. Happily, my mother agreed to come with me and I think this had a positive effect on the process – as after an initial pre-amble we were asked the same questions completely separately, by a psychiatrist and an occupational therapist. The process took longer than normal for me according to the psychiatrist when he summarised, at around 4 hours in total. However, thanks to some carefully chosen questions from the two clinicians, I essentially relayed my life story including my successes and struggles. There were so many questions and I was so keen to impart everything that I knew that I am unable to remember the detail of the questions, however the report which I received about a month later was such an accurate and concise reflection of my life to date that I felt it had been a very worthwhile process. The psychiatrist was absolutely satisfied that I have Asperger’s’ syndrome by the end of the assessment day itself, but the report helped me to reflect on what it means for me.

Personal Effect

I began the process of reading and assimilating information about Asperger’s’ at this point, starting with Cynthia Kim’s autobiography. I didn’t quite see all of it in myself but I saw enough. I then began to buy more factual books including information leaflets from the National Autistic Society and saw more and more of myself in what was written. However similar to Paul’s assertions, things went a bit astray when I started to read certain professionals books on ASD. I notably to not feel any association to any of the works by Prof. Tony Atwood. I think it’s a case of finding the literature that speaks your own language about how you understand your condition, and look for more works by that author. This process has helped me to become more self-aware, and in turn more ready to speak openly and frankly about my condition, how it affects me, and my coping strategies to those who legitimately have cause to know about how I function. Following this diagnosis and framing (from literature) process, I came out of my mental health crisis, started to not fear social situations quite so much once again, and eventually returned to a support work role. I also made the decision that I had possibly found the “missing link” for study, and applied for university again – after the official deadline, but it was as soon as I felt ready to try.

To cut a very long story short, I disclosed my ASD diagnosis to this university when I was offered an interview. Arrangements were put into place both before the interview and in time for my start of studies. I am currently studying a degree in Learning Disabilities Nursing, with a lot of understanding from the university, some positive inclusive measures as well as some personalised reasonable adjustments to support me, as well as additional funded support and equipment. My experience so far at university this time is very positive, very different to the times before. I feel like a lot of people are rooting for me to prove that someone who has ASD, and therefore some degree of insight into other autism conditions, and the non-verbal communication and challenges of individuals with learning (intellectual) disabilities can be an asset to the nursing profession. This is not to say I have not met obstacles, and there are occasions where I have been asked directly whether I feel suited or capable to the role of a nurse. The difference is that now I have my answers, with evidence to back them up, and I know where to channel my positive energy and get the best out of myself, whilst doing something very important to nursing, which is reflecting on my challenges and discussing them with candour.

Final Message

My final message to anyone considering an ASD assessment is that, if you feel ready for the possible outcome of a confirmed AS condition, you should absolutely seek out that referral. While it will bring validation to your concerns and suspicions, it won’t solve ever issue by itself. Barriers will remain, questions will be asked. But if you view your assessment report positively and build on your knowledge base, you feel more able to answer those questions as time goes on. You will also become more in tune with how to adapt your life to be at your most optimal – knowing the regimes and things that work for you, and considering equipment, therapies or other types of support that could help to overcome some of your other barriers so that you can fit into what I call “societal norms” – coping with the sensory overload and incongruent structure of the 9 to 5 office, for example. I would add if you have not heard of visual stress or Irlen before, it may be worth looking into this as I have found it can really help me to focus and “dampens” my sensory overload, in a similar way to having headphones on while I work. There are a lot of potential co-morbidities with ASD, luckily, I already knew about my dyspraxia diagnosis – but I have also found that I am the locus of understanding how the two conditions interact with each other. You may find that ASD does not quite explain everything for you, just as I found that Dyspraxia did not explain everything for me. If that’s the case, keep investigating, the more you know about yourself the more adaptable you will become and the more opportunities will open. There is strength in knowledge!

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