A marathon effort for Autism NZ

On 31 July 2021 we will be running the Taupo marathon (James) and half-marathon (Jess) and raising money for Autism NZ. For us, it’s not just a run, it’s a metaphor for a larger effort we have both made over the past 18 months in repairing a relationship significantly damaged by undiagnosed autism and the consequential years of living at crossed purposes.

It’s a long story, but here’s a nutshell.

James: It's one thing to grow up knowing that you have ASD (autism spectrum disorder), and to learn to manage your life around it, but it's quite another to be diagnosed in your mid-40s. I always knew I was different but didn’t know why. People just seemed to “get” the world and other people, while I felt like I was on the outside looking in. I struggled through my teens, and as a coping mechanism, began to construct a narrative to make sense of why my brain seemed to work a little differently to most people's: “I’m different, I don’t need people, I’m a loner”. This narrative was later supported by my doing stand-up comedy for 14 years, “I’m an oddball, I’m a struggling artist, I don’t need to conform”.

I wanted a partner and family like everyone else, but because my brain used up most of its power deciphering the world and dealing with sensory overload, I had no innate capacity to appreciate another person’s needs, and I had never been taught how. Deciphering Jess felt like reading a book but only getting to see every 5th word.

When our kids came along, the chaos and the sensory overload were overwhelming at times and, without any understanding of ASD, I often blamed Jess for my experience of the world.

Jess suspected I was on the autism spectrum but I rejected this for a long time because to me the problem was “out there” and it made me angry to think she was blaming me. It was during our second separation that I was ready to accept that I might have ASD and agreed to see an ASD therapist.

Once it became clear, I initially felt quite angry that I’d had to struggle alone for so long in ignorance, and I had to reframe my entire life, but ultimately it was a relief to have an explanation. I know now that my challenges were/are not my fault, even though they are mine to manage. The learning curve has been steep, and the challenges will remain, but I am grateful to finally understand the real me.

Jess: I initially found James fascinating, quirky and hilarious. We shared similar values and interests and hanging out was fun and easy.

However, after we were married, our lives became increasingly oriented to James: his predilections, his routines, his perspective. It is hard to be married to someone who has a hard time with social skills, interpersonal communication, empathetic understanding, or flexibility of thought. With no ASD explanation, it looks a lot like extreme selfishness.

It seemed like my needs became irrelevant, so I grew hurt and angry, and we fought a lot. The problems were compounded with the arrival of each child and we had two periods of separation when it became too much for me. I felt like I was going mad at times because to everyone else James seemed so amiable and inoffensive (a phenomenon I now know is called the “Cassandra syndrome”). I was ready to give up during the second separation, but it was then that James finally accepted that he might have ASD.

We have both worked hard over the past year to apply the reality of ASD to our partnership and our family dynamic. It’s far from easy, and we have had a lot of help from our therapist, our faith and our friends/family.

But I want the highest accolade to go to James because if my effort is the equivalent of a half-marathon, it is he who has taken on a full one.

In a world geared toward neurotypical people, it’s tough to have ASD. And it’s particularly tough to have to discover, learn about, and accept responsibility for it at age 46. James has shown amazing courage and humility over the past 18 months and we are finally looking forward to the future with hope.

Us: If you’re still reading this, thank you… we are doing this to make a statement of hope for others and to raise money for Autism NZ.

Autism NZ exists to increase awareness, decrease stigma, and get on with the important work of supporting people with ASD and those of us who love them, thus making the world as welcoming and enabling as possible.

You can show your support for us by making a donation.

Ngā mihi,

James and Jess Keating

Photo credit: https://catherinelundinphotography.mypixieset.com/