It just shouldn’t be this hard

December 2023

Kim* has been in her current role as a senior policy officer in a NSW Government department since 2020. Before that, she had a diverse employment history in both the public and private sectors and has always taken “real pride in my work and in doing a great job”.

Kim was diagnosed with autism spectrum disorder in 2018. This neurodiversity brings some challenges for her in her personal and professional life.

When Kim disclosed her diagnosis in a previous workplace “it did not go well”. The manager she trusted with the information shared it widely without her permission. People didn’t understand the condition and “treated it as a mental health condition”, making assumptions about what it meant.

“I felt like it instantly differentiated me and not in a positive way. And there was no effort at all to understand this, to work through this with me.”

When Kim started her current role, she chose not to disclose her condition for about 12 months. Her role often involves preparing advice at short notice (within a matter of hours), as well as meetings with stakeholders and intensive research. There's “a lot of variety and unpredictability.”

Kim has auditory processing disorder, which means “it can sometimes be difficult for my brain to make sense of what people are saying… it sort of gets a bit scrambled, so that can be quite difficult in a meeting where a lot of people are talking; I will remember the conversation, but I won't necessarily remember where we landed at the end.”

Kim’s working memory can be “a bit erratic” and she can struggle with things like decision making, task ordering and forward planning. Through her own extensive research, she has identified various types of software as well as strategies that work for her. In fact, when she has access to the software she needs, Kim says she is probably better at managing those things than people who don't use those kinds of techniques.

After about a year in the role, Kim felt comfortable sharing with her manager and director that she had been diagnosed as neurodivergent. “It was almost such a non-event in a positive way that it was great. They just said thanks very much for letting us know, if there's anything you need, reach out.”

“It made me feel like I could be my whole self at work.”

But a few months later, at the start of 2022, Kim applied for a workplace adjustment for permission to use a project management and collaboration tool that is widely used in the public sector, but not in Kim’s agency.

At every step of the way, the onus was on Kim to know who to talk to, what to ask for, which team, which person. “All this time it's been really lonely because you’re literally doing it on your own.”

Kim’s request fell into “a black hole” between the IT and Workplace Adjustments teams and often her enquiries “wouldn't even get a response.”

“I found this a really frightening process – disclosing that I had a disability to my workplace is something that made me feel very unsafe … and for nothing to happen felt awful because I was asking for something that I genuinely needed to be excellent at my job. To not even hear anything back, felt really awful.”

“It felt like an exercise in both vulnerability and humiliation, it felt really degrading.”

In the end it was the Disability Employee Network (DEN) that pushed her request through to a member of the IT team. They asked whether I knew anyone at executive director level or above who might be able to support my request, but I didn’t.

Kim says she felt powerless and “in desperation” disclosed her condition. With that information, the person’s attitude changed, and they found a way to push the approval through. As it turned out, this IT person had a close friend with a similar condition to Kim’s and understood the challenges that come along with it.

Kim then went back to her manager who put it through to the team’s executive officer to arrange.

They said “we don't have the budget. Can't you use some of the software we already have in the department? And that just broke me. The software costs under $150 a year.”

Luckily, the DEN knew the executive officer and stepped in.

Kim says “the only reason I persisted with this was because I have young relatives with the same condition, but more significantly affected than I am. Bright young people who, if they have the right support, will have wonderful lives. And I thought, “I've got to help blaze a trail for them. I want to make it easier for the people who come after me.”

“If this is what happens to me, someone who has had a bit of life experience, reasonably secure now in my diagnosis and my need for supports, intelligent and motivated… If this is the struggle that I face to get access to a fairly simple support, I can’t imagine how hard it must be for others.”

“It's been disappointing. It just should not be this hard, particularly in the public service, which is talking about wanting to increase the numbers of people with disabilities in its employment. If you want to do that, you have to give people the adjustments they need in order to do their work.”

Part of the difficulty with obtaining this workplace adjustment seemed to be that different teams operate in silos – particularly the workplace adjustments team and the different parts of the IT team. “Even they don't know what to do with things like this when they come in”.

“The workplace adjustments process is meant to help prevent this kind of situation from occurring, but in this case, it didn’t seem to work.”

It took 20 months for Kim to get approval to use the software, and she was required to fully disclose her condition to a range of people all the way up to executive director level, which she had not wanted to do. And in the end, the approval was not even achieved through the workplace adjustment process at all, but by ‘luck’.

“It didn't end up going through the formal channels. To the best of my knowledge, my access to this software still hasn’t been approved as a formal workplace adjustment or listed on a workplace adjustment passport. I ended up having to use those quite informal channels to get it approved. I've heard nothing from the workplace adjustment team about any of this. This was all done through our DEN.”

“The person whose credit card I had to put the software licence fee on is retiring soon, so I'm fully expecting I'm going to have to go through this again when I have to renew the subscription.”

“When you have a disability, life is already more difficult than it is for most. When you have to fight for the adjustments you need just to be able to do your job, it disadvantages you even further.”

*Name has been changed to protect the privacy of the individual