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InfoQ Homepage Articles Autism at the Workplace: Autism Coaching as a Methodology

Autism at the Workplace: Autism Coaching as a Methodology

Key Takeaways

  • As a person on the autism or other neurodiversity spectrum, you need to get to know yourself really well, as everyone with autism or other neurodiversity has different needs.
  • Communicate to a trusted person about what works for you and what doesn’t. For example, if a personal office is really important for you to focus and to be more productive, let your leaders/ executives know.
  • Document what gives and takes energy. This may be an overlap of well-known givers and triggers in the knowledge field about autism spectrum/ neurodiversity, but can also be the opposite. For example, most of the spectrum is introverted; Dennie Declercq is extroverted.
  • Balance your energy during weeks and days. If you have documented what gives and takes energy it's important to plan your week accordingly, so that (if possible) there’s on a daily basis a balance of energy givers and triggers.
  • Use your talents. We all have tasks we prefer over other tasks. This is OK. If you really have a specific talent (frontend, security, accessibility), it’s important to convince the team or leadership to give you these tasks as much as possible.
  • Going for your passion, even as a volunteer without a paid job, can in some cases be better than trying to live in a box where you don’t fit.

As a person with autism or other neurodiversity, it’s important to get to know yourself really well. When possible, it’s even better if another person in your environment can get to know you from the inside-out. Dennie Declercq and his mom Ivette Marchand found a way to allow for open and vulnerable communication between them. This helped them make Declercq’s own life-manual, which enables him to be happy and productive as a software developer.

Dennie Declercq and Ivette Marchand gave a talk about autism coaching titled "How do I Help my Son, REVISITED" at NDC Oslo 2023.

After being diagnosed with autism, Declercq went to a school for adolescents with autism. The school specialised in autism, but he wasn’t allowed to study what he wanted. This resulted in a job he didn’t want. Declercq mentioned having loads of problems; he even was bullied by other adults. He was being pushed in the wrong box and couldn’t really develop a great life.

In 2011, Declercq had an emotional/mental crash and received a sickness benefit for a longer period of time. Due to that, he immediately went from a full-time job to being jobless.

After a while on sickness benefit, Declercq had the opportunity to leave the paid-work circuit and was offered a job as a software developer in a daycare centre for people with disabilities. This was a job on a voluntary basis, which meant they couldn’t pay him, but he kept his fee from the government. His living costs are covered by this benefit. He doesn't need to work, but he is allowed to spend free time working as a volunteer:  

This is really awesome, because you choose the job because you are really motivated to make a change. I could develop software for a good cause: people with learning disabilities. I could specialise myself and pay my living (bills, food, rent ...) costs. This was the big turning point in my life. My environment changed to my needs and I started to get happy and productive.

Marchand mentioned that although they didn’t have the terminology, they started very early with making their own manual of understanding Declercq’s needs and the direct link to his behaviour. This also resulted in people who didn’t agree with their way of raising a child. But after all, they didn’t have a choice, Marchand mentioned.

A life manual is a continuous work-in-progress, from the time you start to craft your own manual until the end of your life. They made a life manual for everything in their life, not only for working. They don’t have everything written down, the reason being that as they have done this for such a long time, it has become a way of life. If you start making your own life-manual they advise you to document everything, writing down on oldschool paper or typing in a digital document.

Declercq and Marchand explained their methodology of autism-coaching.

It’s a combination of open and vulnerable communication and daring to share the details and making Declercq’s own life-manual. Of course, if you are making a life-manual for a life-time, you will need to remove parts, add parts and change your thoughts. This is not always easy and nice to do.

It’s like making a software methodology, trial and error. Sometimes there’s a bug in the way that Declercq handles a situation and debugging takes time. The good thing is, after a long debugging period, mostly we are blown away by the impact of the solution, Declercq mentioned.

Autism-coaching is not an official therapy but coaching is an official methodology in the field of working with people with disabilities. We are surrounded by people using this methodology, Declercq said.

Declercq’s biggest advice is to get to know yourself from the inside out. Learn about your problem triggers and energy givers. Make your own manual by documenting what gives energy and what takes it away.

If you don’t have your (dream) job yet, just believe in yourself, Declercq said. Believe you deserve to contribute to society with your programming super powers, but most importantly do know and believe society deserves your superpowers.

InfoQ interviewed Dennie Declercq and Ivette Marchand about living with autism and autism-coaching.

InfoQ: What did your life look before you were diagnosed with autism?

Dennie Declercq: My behaviour was not like the other children’s. It was not clear what I could say to whom. For example: I communicated in the same way to the head of my primary school as I talked to other children. Other people’s limits and boundaries were not clear to me, and I was over-communicating. As a result, a lot of people and other children didn’t like me. Children started to bully me and adults started to nag at me or my parents about my behaviour. This resulted in more problems.

Note that I can only talk about being a child if I talk about my life before I was diagnosed with autism; this is because my diagnosis was when I was 13 years old.

InfoQ: What happened after your autism diagnosism?

Declercq: The diagnosis didn’t fix my problems as a person with autism because my environment wasn’t able or willing to adapt to my needs. I was not allowed to study what I wanted. I kept being pushed in the wrong box and couldn’t really develop a great life.

For example, I was continuously pushed to do a job in a factory for people with disabilities, and I became mentally ill due to that job. If I cannot work with my brain, but have to do easy manual tasks, then my brain takes me to places where it’s not good for me!

Ivette Marchand: I was relieved knowing what was different about Dennie. We couldn’t understand Dennie’s behaviour- sometimes we thought he just behaved with bad intent.

At the same time that Dennie got his autism diagnosis, the clinic also advised us to take Dennie to a school for adolescents on the autism spectrum.

However, we didn’t agree that this school’s approach was completely right. I think the reality lied somewhere in the middle: understanding Dennie’s needs and behaviour was necessary, however following real strict planning and a balanced rest-and-activity system was not working either.

Declercq & Marchand: Let’s explain some pillars of our approach to making a life manual for yourself. Making a life manual is a huge topic, and this is just an article, so we will need to focus on just one example of the life manual; we will not be able to share the complete process to make a complete life-manual.

Let’s focus on energy, planning and communication in work situations.

  • Each activity gives or takes energy:  start writing down what you did during the day and what the activity did to you. Were you more energetic after the activity, or were you more tired after the activity? Can you give it points on a scale?
  • After a while you have a document with which activities give and take energy.
  • If you know what gives and takes energy, try to plan your week accordingly so that there’s a balance between activities that give energy and activities that take energy.
  • Communicate with trusted people around you about your feelings, when you feel energetic and tired. Communicate about your needs. Ask for help with activities that take too much energy.

An example of activities that give and take energy: some people get energy from doing coding work in an office on their own, while other people need people around them. For some people, meetings take up a lot of energy if they need to listen and take notes. Others love to brainstorm about new ideas.

InfoQ: How does having autism impact working life?

Declercq: This is a difficult question. I would say it has a big impact on my situation. For me, my autism resulted in not finding my way on the paid working circuit; rather I had a fee from the government and was only working as a volunteer at a daycare/ coaching centre for people with learning disabilities, where I developed software for people with disabilities, but not in my favourite technologies (.NET). After a while I got more self confident and founded DDSoft, a nonprofit initially making software for people with disabilities in .NET but later transitioned to a business connecting the social industry with the IT-industry. To make this concrete, I give an example for both: we give in-house training at (tech) companies about autism and accessibility, and we make IT-projects for social businesses (coaches, projects for people with disabilities).

Although it’s extremely important to say that this is my specific situation, it’s a combination of my autism, my childhood trauma and the school in that time not providing a curriculum for a job I really wanted and was all about my talents (being a software developer). Those three accumulated and made a job impossible for me. I do also know of some very talented people who have autism, and have been successful with paid work.

Marchand: Due to how our generation has grown up, as a starting point it was very important that Dennie had a job, even if it was not as a software developer but in a workplace for people with disabilities. We motivated Dennie a lot (rather, forced) to hold on to his job. Being without a job for a reason that "isn’t visible" was not done.

But, after seeing Dennie’s happiness and even mental and physical health going down very quickly, due to his having a job where he didn’t need to use his brains, we accepted that Dennie be jobless for a period. .

The first moment Dennie told us: “Maybe I can do volunteer work”, we shivered! But seeing how Dennie was finally rising and shining was the most important thing. We saw how he accelerated his own unique career. We heard about projects in the daycare/ coaching centre Dennie did, and how proud and confident he became. When Dennie took the first steps for his nonprofit, we saw how conscious and carefully he researched the steps to take without taking risks. And of course, we see how many conferences all over the globe invite Dennie to give presentations, and most importantly, how much energy those trips give to Dennie when he comes home. We are proud and happy!

In 2018 I had the privilege of being invited to join Dennie on his trip to NDC Oslo where Dennie gave a talk. Seeing and experiencing how Dennie lives and is really accepted at conferences made the circle complete!

InfoQ: How would you define autism-coaching?

Marchand: At first, it’s not always simple. It’s about having loads of patience and respect from both sides. It’s having close, honest and deep conversations. Sometimes it’s getting the best possible or least worst outcome.

Declercq: It’s having deep conversations and having a learning mindset. It’s learning about my own needs, my body and mind. Even though we have been doing this for years, sometimes I am still surprised by how big the difference is between what we think I need and what I really need.

For example: before the pandemic, my parents thought that I was doing too much out of home activities like conferences and business meetings in my own country (Belgium). But during the pandemic my parents saw how difficult my life was again due to too few stimuli. I knew that if you submit for conferences you receive rejections too, and you can’t decline an accepted talk because you had another conference last week (or in the same week). So I was submitting for a lot of conferences (and I still do).

Also for the nonprofit, I need to have a lot of events in my country to find my customers, and these can happen just a couple of days after a conference trip. My parents used to prevent me from doing too much and advised skipping meetings in my own country, for example. If I tried this, I didn’t find enough customers and our budget was running low. The other side is of course also true: sometimes I am very tired and stressed from having too much on my agenda.

InfoQ: What have you learned during the Covid-19 pandemic?

Declercq: That the world is not built for people who are different, and don’t fit in the box of “normally accepted”. With this I do talk about people who have different needs, opinions, struggles and thoughts, than the majority of people.

Next to this, people are blind to their own conditioning, generation after generation. For example, before the pandemic, even my parents thought that I travelled too much to speak at conferences, that this wasn’t necessary. During the pandemic, we saw that I really needed those trips. External stimuli from travelling (conferences, hotels, train stations, airports,...) do silence the internal stimuli in my head and body (dark thoughts, tense muscles, physical pains, ...).

Most people advise a stimuli-less or stimuli-free way of living for people with autism. To be honest, this works for the majority of people with autism. The reason is that the majority of people with autism are introverted (90+%), whereas I am extroverted. Believe me, people have a big blind spot. This is not good.

Marchand: The media and governments did a "good job" in separating people, boxing and framing the "normally accepted way of living in times of pandemic". Some examples they stigmatised:

  • People who needed to see their parents, they ignored the need;
  • People who did meet their friends when it was not allowed in during lockdown;
  • People not being able to show proof of vaccination (multiple reasons: ex. not having a modern smartphone with the digital certificate, not being vaccinated for whatever reason,...)

The media, experts and politicians judged those people and separated them from the people “behaving as they should”. It’s really not ok to make such strict rules during lockdowns and in the process decline a lot of people’s mental health!

InfoQ: What’s your advice for developers who have autism? And for people working with them?

Declercq: Look for a person to help you if needed. Make a plan to communicate your needs to your closest bosses and co-workers. Decide if you need help from an autism or communication expert to structure the manual to pass to your team.

Marchand: Communicate a lot, have a lot of patience to understand how your autistic coworker works, and work together to the same goal. This approach provides an autism-friendly working environment, and you will be surprised by your coworkers’ abilities!

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