Approximately 1 in 54 children are diagnosed as being on the Autism spectrum. I have two children on the spectrum and providing care for them is a challenge. Change is exceptionally disruptive for my sons. My wife and I have adopted many of the core tenets of DevOps and Reliability Engineering into the care model we use. We leverage small change sets, active observability, continuous improvement, and blamelessness. I think what our experience shows is the strength and importance of the human elements of DevOps culture, not just for our work teams and orgs, but how we approach challenges in all aspects of life. Our life illustrates that high performing and happy teams exhibit empathy and respect for each other and their work.
Our adoption and adaptation of DevOps culture is a unique story of leading a transformation in a setting where team members were not initiated or familiar with DevOps culture. Telling our story requires a few important caveats first. This story is about the adoption of Devops culture by our core care team, this is not a story about specific therapies or care plans. This story is very tightly scoped to my children; autistic people are not a monolith, and must be included in any discussions concerning their lives, care, and rights. This story is not about eliminating or reducing toil. Caring for my sons is not about making my life easier or less toilsome. It is about ensuring they build important skills toward living happy, independent, and fulfilled lives.
My sons are happy, healthy kids. Aiden and Henry are a lot like neurotypical little boys in many ways. They love to play outside, watch cartoons, play with their family and friends, and they love to run around and be loud! They do live very different lives however. Both Aiden and Henry are non-speaking - they do not rely on spoken language as their primary method of communication. Both of the boys have sensory processing disorder; meaning they physically experience stimuli in different ways from most people. They face challenges in building important skills and coping in situations which are discomforting or difficult for them to understand. In our efforts to meet these challenges, our team has adopted many of the same principles your engineering teams use to build strong collaborative cultures and achieve high performance as a team and in your systems.
We have found that introducing small changes to their routine is “safer” than abrupt changes. Safe(r) in this context means the same as in an SRE or DevOps context: less risk of interruptions or incidents. Small changes greatly reduce the impact of failures in systems where the impact of changes cannot be fully predicted - true of both software and humans. Some failed changes are normal and expected, the key is to minimise the interruption. Our care teams (parents, therapist, family members, friends) have learned that introducing changes in small batches with high velocity leads to less disruption and stronger skill building. We recognize that our sons' inputs are critical to success. When introducing a new skill tree to our routine, such as self feeding, we try small changes and listen to their responses and feedback to determine if a change set works. For self feeding at meals, we started with small plates and small bites of food, and iterated over time as we developed that skill.
We pay close attention to our sons, their environments, and very carefully curate and design their environments to meet their needs. We try to avoid creating “gold plated” environments however. Their designed environments need to avoid major causes of disruption while allowing the introduction of new elements and skill building exercises. Close attention in monitoring and observation of their environments and interactions allow us to feel high confidence when introducing new toys, optimizing their relaxation zones (lots of fluffy pillows!), and providing their desired positive reinforcements when they master a new skill.
Through our monitoring and observability patterns, we recognize patterns and collect data about what works for Aiden and Henry and what does not work. We focus on making small improvements each day (and sometimes each hour) to their environments and activities, and to the adaptive modifications and accommodations they use. Aiden has recently started using an AAC (adaptive and augmentative communication) device, while Henry still relies mainly on sign language and physical directive communication. We accept that we can't treat environments and activities as monoliths, and embrace small chunks of continuous improvements to ensure they have happy, healthy lives.
We don't wait around for meetings with care teams to start implementing changes to environments or accommodations for our boys. We’ve worked hard to build a care culture for them that embraces constant delivery of techniques, tools, and methods that allow them to live happy and healthy lives. Everyone on our teams is empowered to try new methods and adaptations (in small doses) because we all know and trust our team. Therapy team members actively document behaviors and write reports on skill mastery and challenges. We use a series of shared docs and Trello boards to make sure everyone on our team has access to the most up to date and accurate information.
Things don't always go as we plan. We experience interruptions and disruptions daily. When things get sideways, we have a totally blameless culture. If a change doesn't work and results in a disruption, there’s no blame. If we have a hard day, there's no blame. This applies to everyone on the care teams and especially to our sons. Things that don't work out or days where we have a bad day, are just that. We recover, talk about and document what didn't work or what didn't meet their needs, and then we move forward. We are a totally blameless culture because it works!
There are no testing and staging environments for us. So we test in production. We have built our culture and care systems around the ability to try small changes, and if they don't meet success criteria, we roll back to a known method or environment. Small interruptions are better than major meltdowns (outages). Things are going to be disrupted, just as any large distributed system is also always a little bit disrupted. We accept that our lives are different, but they are not less in any way. We are not striving for everyone to be 100% happy all the time. We are striving to do the best we can and meet the goals that are right for our situations and circumstances. We accept and love who we are, and how we live, and that helps us enjoy the things we do and the time we spend together.
Things happen. We experience interruptions and disruptions and outages. The way we respond and manage those make all the difference in being able to recover, remediate, and ultimately thrive. My wife and I work in primary/secondary response shifts and support each other. When one of us needs to unplug and have a break, we allow each other to do that. No one can be “on-call” 24/7 - 365. As we manage and recover from events, we try to stay calm, to document as we assess, and most importantly, we let go of frustrations and avoid blame when an incident happens and after it's resolved. We stay committed to our main goal: happy, healthy, enriched lives for Aiden and Henry and the whole family.
Our care plan has been largely influenced by my work in Devops culture and Reliability Engineering. We joke that we do DevOps with computers at work and Devops without Computers at home. I think what our experience shows is the strength and importance of the human elements of DevOps culture, not just for our work teams and orgs, but how we approach all aspects of life. If our story strikes your interest, I encourage you to reach out to people with autism and their teams in your community and engage and communicate with them.
