Last September I was diagnosed with autism spectrum disorder level one, a lifelong neurodevelopmental disability. This is the ‘mildest level’ and is given to people who can cope with some situations so well that others do not know there is a difference in the way they process information, but once they get to know them, and see them in more challenging situations, notice the differences.
I was told that it is possible to ‘move up and down the levels’. Although I have never been at a level where I need a support worker, it has certainly been the case that I have moved up and down level one – had some phases in my life where I have felt almost neurotypical and others when I’ve felt very autistic.
I have noticed this most acutely in my response to challenge and what constitutes a challenge. Many easy, everyday activities, which are not challenging for a neurotypical person are often very challenging for an autistic person. This is due to a combination of sensory sensitivity and the anxiety that comes from difficulties with interpreting social signals and processing complex information from multiple sources at once.
I hit my lowest level in my early twenties when I was in the second year of university when I had what I believe, looking back, to be an autistic meltdown. This was brought on by the combination of the pressures of achieving a good degree and by poor lifestyle choices – going out drinking and taking drugs two or three times nights a week disrupted my sleep pattern and left me with insomnia, anxiety, and experiences of derealisation.
A massive panic attack on the motorway led me to give up driving. It was a challenge to get out of the house, onto the bus, and to university. I sat at the back in lectures, crying quietly, silent tears running down my face. Everything, everyone, was threatening. When I talked to my lecturers I felt so panicky and light-headed I thought I was going to faint or float away. One day I sat alone staring at a tomato on my sandwich unable to recall what it was.
Nobody noticed. When I had occasional sobbing fits or freaked out about something the response of my ‘friends’ was ‘Lorna’s going west again.’
Eventually I sought help. I had a good doctor. We worked out that sleeping tablets and beta blockers weren’t helpful for my insomnia or panic attacks. I got put on a medication called Venlafaxine that helped regulate my sleeping patterns and mood and allowed me to establish a healthy sleep and exercise regime.
Unfortunately, when I was referred to a psychiatrist, I was told I wasn’t eligible for treatment because I hadn’t attempted suicide, in spite of self-harming.
Luckily the medication and developing a good routine helped (it was also helpful that I couldn’t drink on Venflaxine!). I ‘got better’ and, in my third year, got 80% in my dissertation, resulting in a first class degree in Philosophy and English.
Since coming off medication I have had many ups and downs. Sleep and exercise have been the key to leading a near-normal life, but I have been unable to overcome a number of challenges that neurotypical people can handle.
I failed to cope with working nearly full-time at the same time as studying for a PhD (as I didn’t get funding). When I worked as a groom I struggled with six day weeks, late nights and early mornings, and the stress of preparing for competitions.
During the period I moved back in with my parents and devoted my time to my spiritual path and writing, at some points working part-time and at some not at all, I was able to live by my ideal routine, getting up early, doing my devotions, writing, exercising, gardening, early bed. But the benefits of this lifestyle were overshadowed by my anxieties about my inability to make a living.
When I realised I would never be able to make a living from my writing I turned to conservation, as something I’d volunteered in, and believed in. Slowly I took the steps, faced the challenges, of progressing from a volunteer, to a volunteer intern, to a trainee, before moving into ecology.
As an autistic person every new thing was challenging – travelling to a new place, meeting a new group, learning a new task or to use a new tool. On my first day as an intern at Brockholes I was terrified of using a radio due to how self conscious I felt about my voice and of losing the key to the tool cabin.
With support I progressed to being able to do most of the tasks needed for the smooth running of LWT’s flagship reserve including driving the pick-up (which I was, at first, extremely nervous about reversing due to poor spatial awareness).
It helped that I figured out I was autistic when I was in counselling for anxiety at this point, so was able to locate the root of my limitations and explain them to the reserve officers, who were both supportive and understanding.
My traineeship with the Lancashire Wildlife Trust on the Manchester mosslands was even more challenging not only due to the long drive but to stepping up from a volunteer into a paid role and taking on more responsibility.
I faced and overcame a number of challenges such as leading volunteer work parties and AQAs, passing machinery tickets, and carrying out surveys. I coped because I was open with my line manager about my autism and he gave me a manageable workload and a regular routine.
Completing my traineeship gave me a lot more confidence and led to me gaining a new job as a graduate ecologist at a local ecological consultancy. This job has brought its own challenges – new surveys, new vans to drive, driving to new places, and, again, my manager and my colleagues have been very understanding about my autism and allowed me to tackle one thing at a time.
The thing I have found most difficult, which surprised me at first, but shouldn’t have done looking back, has been dealing with night work. During my traineeship I had a fixed routine of getting up at 4.30am, doing my devotions and meditation, exercising, then working five hours onsite and two and a half hours admin from home flexibly, eating, bathing, studying and/or writing and getting to sleep by 8.30pm.
Going out to do great crested newt surveys when I would be going to bed and getting in a few hours after my bed time has been draining and disorientating. The next day and, for a couple of days afterwards, I’ve not only felt tired but been in a low mood and had trouble concentrating and with fending off negative thoughts that don’t usually come through when I’ve had eight hours sleep.
It has been a blessing to be part of a team who are very aware about mental health. I have told my manager how important both sleep and exercise are to maintaining my mental health and we have agreed that I never need to start earlier than 8am, so I can get my exercise in, and I can do only one night a week. In a profession in which night work is central I am very grateful for this.
In the couple of months I have been at Ecology Services Ltd I have not only learnt to carry out surveys, but the process from start to finish, from speaking to a client, setting up a quote, organising the survey, doing it, and writing a report, and found a great deal of pride in doing the job and doing it well.
At present I’m coping and feel like I’ve grown in confidence quite a lot. However, I am apprehensive about the fact that the nights are getting longer and that bat season, the busiest time of the year, is approaching. I am hoping that, with continued support, I will be able to make it through the summer.