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Specialisterne Foundation

Specialisterne Foundation is a non-for-profit organization that works to enable one million jobs for people with autism and similar challenges. The foundation owns Specialisterne Denmark and the Specialisterne concept and trademark.

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Do you find that some days you just cannot get things done?

 

No matter how much you rush around trying to tick things off your to-do list, the list doesn’t get any shorter?

 

Are you prevaricating? Are you stressed? Is there something else going on?

 

Finding out what is stopping you from being productive is often the key to removing that barrier and being productive again.

 

For me, a recent pandemic related experience taught me clearly what my personal barrier is.

 

I am usually someone who is very productive. My mind is great at focusing and loves to explore a topic in-depth. This is common for autistic people; our brains are wired for this. In general, the pandemic has supported, rather than thwarted, my output. Something I wrote about in my article Surviving or thriving: neuro difference pre and post lockdown, for those who are curious. 

 

But every once in a while, I have one of those days where no matter how much time I have, or how much I need to do, it feels like I am back sliding and that work is mounting up rather than being chalked off.

 

These days are rare for me, and frustrating as I find them, I’d never given them much thought. But then a pandemic experience rendered clear to me what is going on.

 

Here’s the experience.  It’s one that many of us have had over the past two years:

 

My son developed a cold, and his school asked us to get him a PCR test. We would know within 24hrs whether he had COVID or not.  Until that point, we should isolate to protect others in the case that he did have COVID.

 

He was tested on Tuesday.  If he did have COVID, then I would have to cancel my travel on Thursday and my work on Friday. I would work from home instead. If he was negative, then I would travel on Thursday and work on Friday. Wednesday was the same either way. Wednesday, I was due to work in the morning and pack in the afternoon. But it was Wednesday that scuppered me.

 

I didn’t do anything useful on Wednesday. I was out of sync with those around me, as if caught up in thought, but I wasn’t thinking anything useful. I couldn’t get a grip on the day. Wednesday was useless. I was useless.

 

I used to work as a special school teacher. In my class I had autistic students. We were taught to use Now and Next boards with them. As a new teacher I would Velcro little symbols onto these boards, which were simply A4 pages split in half. One half was labelled Now, and one half was labelled Next. I would Velcro a symbol on to show what they were doing Now and another to show what was Next.

 

As activities changed, I would move the Next activity onto the Now side and add whatever was coming Next. Sometimes I did not have the right symbol. Sometimes there wasn’t a symbol for what was coming next, and sometimes the symbols would get lost. Some of my students could cope with a gap on the Next side of their board, and others would become very distressed. 

 

We would explain that Next it was the Christmas play, or a visit from the local Fire Brigade or whatever the thing was that we did not have the symbol for, but it did not console them. Nor would it make any difference what was on the Now side. It could be that student’s favourite was happening Now.  But if Next wasn’t there, the distress would overtake them, and they wouldn’t be able to engage. 

 

Those students were autistic people who would be described as having high support needs, and I am an autistic person who would be described as having low support needs. In some people’s eyes, my students and I are very different. Autism is a broad spectrum, but there is common ground across it.

 

I need the Next on my Now and Next board as much as they did. 

 

When my son was required to do a COVID test, I had two possible symbols in my head for Next, I knew what both were, but I did not know which would be Next. I understood fully that one or other would be next, and I understood that I would not find out until the test results came back. I could plan both versions of life, but I could live neither. My mind constantly scrambled forwards trying to find out what was next. I need the symbol stuck to the board. I need the predictability. I need the certainty. Two symbols held near the board mean nothing to me. I need to Velcro one on. 

 

On Wednesday I was disabled.

 

I wonder if people will read that and think, “Autism is a disability”. 

 

That is not how I feel about it. 

 

Yes, on Wednesday, it could be described as such. But on another day in my life, it could be equally described as enabling. I often talk about capacity in context. In environments, both physical and intellectually suited to my neurotype I am enabled, and in environments that do not suit I am disabled. In that regard I am the same as everyone else.

 

I often think about the students I used to teach. If we say they are disabled and I am not, it is an easy get out. It leaves them in their distress without challenging us to adapt the environment around them. If I hadn’t worked with them, I wouldn’t have realised why I couldn’t function on Wednesday. Understanding the commonality of experience across the autistic spectrum can provide us with ways of finding insights to support those with higher support needs. If I were their teacher now, I would make sure there was a symbol for the Christmas play, for the Fire Brigade, and for all of those things that there were never symbols for back then.

 

In terms of workplace productivity, managers need to be aware of what an impact uncertainty can have on neurodivergent brains. Dr. Stephen Porges explains: “A violation of expectations is a form of threat. Predictability is a neuro metaphor for safety.” I work for myself. So, on Wednesday, it was my time I wasted. But if I were your employee, you would not have got any useful work out of me on Wednesday. On Thursday, I felt wobbly and jittery all day. If you have ever run a marathon, it’s the way you feel as you cross the line: physically exhausted but emotionally hyped. On Friday, I could have slept the whole day.  I was utterly exhausted from the physical and emotional stress of not knowing what was Next on Wednesday.

 

The adaptations are simple once the difference is understood:  make plans, stick to them, display them (an office calendar is great for orientating everyone). If you change the plans, actually change them as much as possible.  Treat “maybes” as a last resort. 

 

My neurodivergence is not something that I can understand my way around. It is not something I can be taught not to be. Practice won’t make it go away. It can be disabling, but the disabling nature of it is dependent on the world around me. In this regard I am no different from anyone else. Some of us occupy environments designed for our neurotypes, some of us do not. Simple adjustments that are considerate of different neurotypes can be powerfully enabling. 

 

 

 

Joanna Grace is a Sensory Engagement & Inclusion Specialist and the Founder of The Sensory Projects. Her book The Subtle Spectrum charts the post diagnosis landscape of adult identified autism.  Her son’s book My Mummy is Autistic, written when he was just 5 years old, explores the language processing differences some autistic people experience and throws a challenge out to the adult world, that if a child can understand neurodiversity what is stopping us grown-ups?