Being autistic – how didn’t anyone know?

May 11, 2017 - Daniel Aherne

Here at Adjust we believe that the number of autistic individuals is much higher than the estimated 1%. And as a result many undiagnosed autistic employees do not receive the support that would enable them to achieve their best in the workplace. Andrew Carpenter is someone who worked for many years before receiving an autism diagnosis. We talked to him about his journey and the impact the condition has on his working life.

“I was formally diagnosed as autistic at the age of 41. How was it possible for me to have lived over 40 years without knowing? It may seem surprising but I had no inkling whatsoever, despite having worked with autistic people and those with learning disabilities for many years. I thought I knew about autism. I was wrong.

I knew about some of my mental and physical health conditions – mostly things that by themselves never met the eligibility criteria for services. The exception was the suicidal thoughts I experienced when I was 14. These led to a prescription for Valium and regular psychiatrist appointments for the next 18 months. The psychiatrist would refuse to start the conversation so we mostly sat in silence during the appointments, which was very unhelpful. At this time I was also aware of difficulties with my hearing – an inability to filter out background noise. I also found it hard to make and keep friends.

As an adult, I finally started to take my partner’s ‘jokes’ more seriously and eventually took an online test. As it turned out, she hadn’t been joking at all, but I didn’t really notice. Eventually I took an online test. My score was so high that I could that I could no longer ignore the possibility that I may be autistic.

“I was formally diagnosed as autistic at the age of 41. How was it possible for me to have lived over 40 years without knowing?

Damaging stereotypes of what an autistic adult looks like often lead to autistic adults not being recognised in the workplace. This can also be true when seeking a referral from a GP for a diagnosis. Andrew, however, had a GP who could see beyond stereotypes and his experience was very positive.

“I explored my online score with colleagues within the health and social care sector; on the whole they were not very surprised. On the other hand, friends found it hard to comprehend as I was known for being a good listener, even a counsellor, when they had problems. In hindsight, I realise that these skills have been learned and are not intuitive. Making myself available for people to talk about their issues had proved to be a great way to make friends.

I asked my GP for a referral to the formal NHS diagnostic service. I was nervous and worried that I may not be believed, as others had told me that if I didn’t display the stereotypical signs of autism I might be turned away. Fortunately, my GP listened and referred me on.

After a nine month wait, I was finally seen and assessed. After the initial interview there was a further wait of about a month before I received follow up report, which I was asked to read and agree.”

Damaging stereotypes of what an autistic adult looks like often lead to autistic adults not being recognised in the workplace.

The National Autistic Society report that 43% of adults with autism leave their job due to not being understood by their employer. This is not a surprise, given that a recent study by Goldsmiths University showed that only 12% of employers had received autism training. As Andrew discovered, once you have a diagnosis you can explain to employers what adjustments are needed for your success in the workplace. These small changes have had a positive effect on his working life: whereas pre-diagnosis he was often misunderstood in the workplace, post-diagnosis he is able to flourish.

“Now I am able to speak freely about my needs and can manage them better. For example, I may ask not to participate in group work, see if I can sit at the back of the room, or explain that I may need to more breaks than the other employees. I am able to be a bit kinder to myself in this regard.With hindsight, I realise all the different decisions and choices I made over the years were ways of coping with employment.

For instance I taught abroad, where any social ‘mistakes’ were put down to cultural differences rather than bad manners. Teaching meant working independently and being in control of a classroom, which was easier for me than working in a team.

Once back in the UK I took an office job. The work was team based but I embedded myself in a different team from my boss. This enabled me to secretly keep my own hours to avoiding travelling during rush hour. As I kept all my deadlines and my work did not suffer it was never noticed. Indeed, I exceeded my targets. I took frequent cigarette breaks to get out of the noisy, open-plan office. I engineered things so that I largely worked independently.

However, eventually I was fired for doing something without first obtaining proper authorisation. It hadn’t occurred to me that I would need to; I trusted my own judgement and moral compass. I can see now that, viewed from the outside, there was a conflict of interest in what I did, but at the time it didn’t occur to me that this would be a problem. Inwardly I felt I was doing the right and ethical thing.

By the time I was diagnosed I was self-employed and mostly working from home. This suits me perfectly. I can keep to my own times of working, avoid meetings that involve rush hour travel, and take breaks as and when I wish to.

Looking back to my pre-diagnosis days I recall booking myself onto many networking or training events. I never attended them – not a single one in 6 years. Each time I made an excuse on the day – I was tired, or had a headache and so on – and would not turn up.”

Andrew believes that employers need more autism awareness training and we at Adjust strongly agree. He gives some practical tips below:

Even within the field of disability autism remains much misunderstood, especially for those who do not have a concurrent learning disability. Many reasonable adjustments made for physical disabilities are actively detrimental to the environment for an autistic person, for example. Bright lights for the visually impaired can over-stimulate, as can, at events, speech-to-text screens coupled with BSL interpreters. When there is too much going on situations can become overwhelming and hard to process.

The ‘spiky’ nature of autism – that way in which a particular task may be easy one day but impossible the next – is also hard for employers to comprehend, and can be mistaken for laziness or a bad attitude. If meetings are chaired more formally, it is more obvious to autistic participants when to speak.We just need to be given a little more processing time and perhaps slightly more concrete direction on how a job should be done. In practice, these minor adjustments can make a very big difference.

We just need to be given a little more processing time and perhaps slightly more concrete direction on how a job should be done. In practice, these minor adjustments can make a very big difference.

To ensure you are making the necessary workplace adjustments for autistic staff contact Adjust. We can also help you recognise any undiagnosed autistic staff among your workforce. Andrew is also available to deliver training to your organisations: you can contact him here www.londonbrokeragenetwork.com