by Lila Saleeb
My husband had a late autism (ASD) diagnosis the year he turned 40. When the possibility first came up, it really surprised us. We didn’t know much about autism and how it can play out so differently depending on so many factors.
My husband had always been really successful both academically and professionally. He had lived overseas as a single man and had led ministry teams. He is a gifted public speaker and has a deep heart to care for others, especially those on the fringe. Even though he is an introvert, he easily comes across as an extrovert. He is warm and really caring. So the thought that he might be autistic had never crossed my mind.
At the same time, we were struggling in other ways. In our marriage we were stuck. After thirteen years of marriage and seven years on the field, my husband and I found ourselves facing conflict that we didn’t fully understand. We love each other deeply, are committed to one another, and have built a strong foundation of trust throughout our marriage. We are both intelligent and gifted communicators, yet we couldn’t figure out why in the world communication had become increasingly difficult between us.
I wrestled with why our family couldn’t function like many other families on the field around us. Why couldn’t we share more responsibilities in the home, or partner better for language learning? Why was flexibility more and more a lost skill? Why was it so extraordinarily difficult for us to find a life that made sense for both of us on the field?
I knew my husband loved me, but I felt unheard, suffocated, and incredibly lonely. We both felt so lost. What was wrong between us? We had always been so aligned in vision, had shared a heart and passion (goodness, it was that heart that drew us to each other!). So why on earth did we feel like we were often at opposite poles as we tried to make ministry decisions? We had no hook on which to hang our struggles, no name to help us label the issue.
When my husband stumbled upon a YouTube video that described what Asperger’s (the label used in the past for level 1 on the autism spectrum) is, he was shocked to discover it sounded so much like him. He had never heard someone else talk about their life in a way that resonated with him in the way that video did. (While this video is not the original one he found, it describes a range of characteristics and experiences of autism in a helpful way.)
This took us on a process of about six months, exploring whether or not he was on the spectrum. And sure enough, after tests and evaluations we finally had a category, a key to start untangling the knots that made up our life.
Since then we have been on a bumpy journey, learning how to factor both our brain wirings and both our nervous systems (I have a C-PTSD diagnosis) into our life together.
Autism and Its Impact
In case you are not familiar with autism, clinical psychologist and autism expert Tony Attwood describes it as a variation in neurological wiring, as a “different way of thinking, learning, relating, sensing, perceiving, moving, and empathising. An important word in this definition is different, not disordered, defective or dysfunctional” (emphasis added). Attwood goes on to describe neurodivergence as a rainbow of at least eight dimensions, and not a linear dimension from low functioning to high functioning.
The nervous system of people on the autism spectrum is greatly impacted by the way their brain processes sensory and social information. Their nervous system is usually a vulnerable nervous system due to years of living in a world that doesn’t understand them or their processing differences. They often have to “mask,” a form of adapting or compensating for the way they function naturally, which is different than most of the world around them.
In a world where they often don’t naturally fit, it isn’t safe for them to be truly themselves, and so often either consciously or unconsciously, neurodiverse people adapt their behaviors, mannerisms, ability to make eye contact (and so much more) so that they avoid seeming offensive, reduce their exposure to bullying, and can form emotionally intimate relationships. This constant work can have an incredibly harmful impact on their nervous system, as they survive by existing outside of their window of tolerance.
Clinical Professor of Psychiatry Dan Siegel defines window of tolerance as the ideal range of emotional arousal where you feel calm, balanced, and able to think clearly and function effectively, managing stress without being overwhelmed. When you live a life of chronic and relentless stress (hello life overseas!), your window of tolerance tends to get smaller, and your ability to be present and connected to yourself, God, and others significantly decreases.
When you live outside of your window of tolerance, you live in a state of protection, not connection. Our nervous system is not able to function in both at the same time. This all explains why our family’s capacity had become more and more reduced as demands, changes and stress on the field increased and also as we navigated toxic relationships both on the field and in our sending church. We were stuck in a nervous system survival state.
When our nervous system is stuck in a survival state of protection, it is incredibly detrimental to our physical, mental and emotional health. It impacts our sleep, digestive system, and executive functioning skills. In that state, we tend to mute or ignore our body’s cues of hunger, exhaustion, or overwhelm. It also impacts our ability to make Spirit-led decisions; when we are outside of our window of tolerance, our awareness of the presence of God with us really diminishes. In that state we have tunnel vision, and our decisions are fueled more by anxiety, catastrophizing, and fear than faith.
The Need for Neurodiverse-Aware Member Care
As a mental health coach, lay Christian counselor, and member care provider, this reality has only fueled my heart’s passion to see member care done well for every kind of brain wiring. As I continue to process the impact of a late autism diagnosis for my husband and an even later diagnosis of Complex PTSD for me, I grieve many things. One of them is that we didn’t know how to set up a life that actually worked for our family from the beginning.
For many years, we were not equipped to find a life that would set us up to thrive holistically on the field. I grieve that we didn’t know how differently our brains functioned, what each of us really needed, or how to partner better in light of our differences. We experienced much heartache, conflict, and tension between us as we tried to make sense of what was happening and as we tried so hard to make our life work.
We didn’t have skills for self-advocacy, or even understanding of where self-advocacy was needed. With a theology of suffering that overemphasizes sacrifice for the kingdom, I think we missed important needed holistic care. My husband is a soldier, and he soldiered overseas—until he couldn’t anymore. A health crisis brought us back to the States, and we are here for now.
A worker friend wrote us a letter recently, asking about how to help neurodivergent workers thrive. She said something like, “It seems like right now the only way forward is for ASD people to mask really hard until they burn out. There has to be a better way.” My heart resonated deeply with that statement. There has to be a better way.
If Christ’s kingdom is made up of both neurotypical and neurodivergent brain wirings and both types of brain wirings are a gift and sure reflection of the multi-faceted wisdom and riches of God, we need to better equip and support neurodivergent individuals and families. We need to.
This conversation is not a fringe conversation; it needs to be more and more mainstream. It needs to include topics like:
- Equipping gospel workers about neurodivergent brain wiring and needs
- Equipping team leaders to recognize neurodivergent brain wiring and how to lead, develop and care with that kind of brain wiring in mind
- Equipping all workers (both neurotypical and neurodivergent) to recognize when their nervous system is in a vulnerable state, when it is functioning constantly on survival mode, and how to develop resilience for their nervous systems
- Offering affordable coaching support for workers to develop resilient nervous systems on the field
- Affordable coaching and counseling resources for neurodivergent (ND) workers
- Affordable coaching and counseling resources for neurotypical (NT) spouses
- Affordable coaching and counseling resources for parents of ND children
- Equipping organizations, team leaders and workers, to think through expectations, to redefine what “success” on the field is, to truly allow the Spirit to lead and define each individual and family thrives
- Creating a safe culture for self-advocacy where people can safely discern their physical, mental, emotional needs and expect they will be received without judgment or condemnation by their community.
- How to leverage the strengths and superpowers of ND brain wiring for the good of the kingdom
Personal Flourishing and Kingdom Expansion
Friend, I am not sure who you are as you read this. Maybe our story resonates with you. Maybe you are exploring the possibility of neurodiversity in your marriage or in your kids or in yourself. Wherever you are, and whoever you are, I see you. You are not alone.
There is so much hope for people of all brain wirings to thrive. The Lord made you, and He wrote your story. He will walk with you every step of the way so that your God-given design and Spirit-filled longings can function together in a way that causes you to flourish mentally, emotionally, and spiritually and that expands the kingdom in you and through you. Both personal flourishing and kingdom expansion are possible; it doesn’t have to be one or the other.
I hope to keep writing on this in the near future. But in the meantime, I want to share some resources that have been a blessing to us.
Coaching (these are all believers)
Barbara Grant – Coaching for ND Marriages, Coaching for ND individuals and NT spouses.
Jeremy Rochford – Coaching for Autistics (Jeremy is on the spectrum himself).
Melissa Corkum – Coaching for families under relentless stress, helping them reset their nervous system and learn how to function under stress with resilience.
Jana M. Smith – Neuroplasticity and resilience coach. Also offers brain spotting. Equips neurodiverse individuals in nervous system care.
Podcasts
Jeremy Rochford
Neurodivergence, Family and Faith
Neurodiverse Christian Couples
Books
On the Spectrum: Autism, Faith, and the Gifts of Neurodiversity by Daniel Bowman, Jr.
Uniquely Us: Gracefully Navigating the Maze of Neurodiverse Marriage, Autism, and Faith by Dan and Dr. Stephanie Holmes
The Journal of Best Practices: A Memoir of Marriage, Aspberger Syndrome, and One Man’s Quest to be a Better Husband by David Finch
Articles, Courses, and Other Resources
Jennilee Rachel – Articles and resources here
Global Trellis – Neurodiversity week
~~~~~~~
Lila is a writer and soul-care practitioner who writes about belonging, faith, trauma, and the slow work of becoming whole. Shaped by a life of cross-cultural living and deep community, she is especially interested in what happens when we lose the places and people that once gave us belonging — and how we learn to be at home with God through Christ in such a way that our souls are safe to flourish and hope. Her work explores the intersection of embodied faith, healing, relationships, and the courage to tell the truth.
