Autism and Challenge

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.

14 thoughts on “Autism and Challenge

  1. tandderwen123 says:

    Thanks for your open account of your problems . It’s really encouraging that your work colleagues are so helpful and understanding and you seem to be really flourishing Great to hear that you’re feeling ok with your confidence and that you’re enjoying doing the surveys . The conservation group that you work for ,Lancashire Wildlife Trust ,do fantastic work here in North West England. I regularly visit the Mere Sands and Longton reserves and am a financial supporter. It’s a bit harder to get to Brockholes but I have visited a few times and it’s on my list . You should feel proud of the work you do for the natural world and for future generations . Such important work. Well done in so many ways. And do keep writing even if it’s not a way to make a living , it’s worthwhile reading your blog and poems . Good luck

  2. stephwynnalicebradley says:

    It is inspiring to read of how you meet your challenges and keep succeeding. It is also wonderful you share your experiences as it could be invaluable to others. Your courage, determination n belief are inspiring.

  3. robinpoet8 says:

    I appreciated reading this too. I read your blog from time to time and over the years I have come to suspect I have low level autism. autism is certainly in my family. Only my brother is diagnosed and he has it more obviously than myself. I recognise your challenges with dealing with multiple sensory information and groups of people, the need for a clear routine and finding new settings and new people difficult. I have found working outside in nature the best kind of job for me. I have always tended to avoid the places where people socialise like cafes or pubs, etc as there is often too much to take in. Libraries are one of the most pleasant indoor places as there is no problem in hiding away! By the way for context I am friend of Nimue Brown and also have known Kevan in the past.

  4. ᛋᛠᛉ says:

    Good for you! In another world, I would love to work in Conservation. It sounds like such a wonderful use of time and resource. Anyway. The ‘Tism runs along the male side of my family and it’s probable that most men on my father’s side of the family dealt with it to varying degrees, with my father having maybe had the worst time of it. If I can be so bold as to impart advice, it would be to always remember that you are not your diagnosis. There’s a huge pressure in “the scene” to forget this, at least where I’ve worked and from what I’ve seen. Anyway, anyway.

  5. Ogden Fahey says:

    You write very well about your situation and awareness of yourself and so on – as a guy, being more out of touch with inner stuff, I went through a similar pattern, losing the plot in my late 20s early 30s, panic attacks and needing to restructure my life, trying to find stability and all that, its all very difficult and less than ideal, but then life itself is peculiar and complex and not often like a focussed story. Anyway, I couldn’t write it up as well as you did just there, its such a tangled mess of reactions to this that and the other, I steer clear of doctors and medication, but I may have benefited from it if I had of done. I do enjoy motorcycling, it’s very meditative for me. Bikes became so big in my life I got rid of them for a while, but then that was when the problems really started to come to the fore! Go figure! I suppose the distraction of riding and maintaining was actually useful in a way. Successful people are sometimes those who are the most focussed, but not always, some seem to achieve greatness just by being relaxed and like really cool – I know which is most appealing, but not so sure which is more realistic, who knows? Take care, or don’t, shish I knew more answers! Xx

  6. Dave says:

    Thank you so much for sharing. I’m sure neurotypical people would find some of your challenges equally challenging.
    The meaning of life for some includes, unwittingly, being an inspiration – and you’re that.
    Good luck with the bats.

  7. Greg Hill says:

    My impression of your abilities when pursuing a chosen path is that, in spite of your lack of confidence, you are more able than most, so I’m sure that as your confidence grows you will continue to excel in spite of your fears. Confronting those fears is like meeting the ‘False Knight on the Road’, standing your ground like the ‘child’ in the ballad, then moving forward.

  8. Nimue Brown says:

    Thank you for sharing this. I’ve seen a number of things online now about people whose stims are more intense/risky/harmful because of a need for more intense sensory feedback. It made me question my own history with self harming. Based on some experimenting, I am far safer hurting myself in a controlled way than either letting the panic run unchecked or risking getting into an unconsidered and less controlled form of relief. I have no idea if this relevant but I thought it might be worth sharing.

    • lornasmithers says:

      Yes… I think for me self harm in the past was a way of relieving feelings of anger, frustration, despair, not belonging, having no place in the world, physically expressing those feelings no-one can see.

      These days, instead, I tend to channel them into and find catharsis through exercise or drown them with drink.

      The exercise way works for the time I’m exercising and leaves me feeling better afterwards and about myself in general, but I have to be careful not to overdo it or else I end up injured or at least sore in a way that inhibits my performance. Having a personal trainer has helped with this.

      Drinking helps for the whole of 2 – 5 hours then leaves me feelings grotty and disgusting for at least a day and often many days afterwards. I tend to binge drink and that’s bound up with a whole load of other issues connected with a history of binge eating and diabetes in the family. I think it relates to being sensitive to sugar, as I’m sensitive to a lot of things – I can’t have caffeine or lactose. Really, alcohol is something I should probably steer clear of too and I’m going to try giving it up for 6 weeks having slipped back into bad habits after giving it up totally for 9 months two years ago.

      I’m also thinking of returning to counselling – I got a personal trainer for my body and should probably take the time to give my mind some care too… can’t believe I’m 40 and still haven’t sorted all this shit out yet!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.