A marathon effort for Autism NZ

$8,923 of $5,000 goal
Given by 94 generous donors in 6 weeks

Fundraising for Autism New Zealand

Nationwide

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/

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Latest update

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We did it!!!!  31 July 2021

We did it! Thank you so so much to each and every person who has donated, sent us messages, texts, emails and good vibes. Your support has been beyond encouraging. ❤️

Stoked to have it behind us. 🥵 But even more proud of ourselves for the bigger challenge that it represents.

Really looking forward to Autism NZ receiving the donation! We will leave this page open for another week or two...

Off for a lie down!!

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Latest donations

Guest Donor
Guest Donor on 08 Aug 2021
$100
Jess Keating

Amazing, thank you so much. Your support is so appreciated and encouraging for both of us.

Jess Keating
G&D
G&D on 07 Aug 2021
To a strong & courageous couple xxx Thanks for running for such a great cause.
$30
Jess Keating

Thank you both so much. Very kind of you... :)

Jess Keating
Belinda
Belinda on 02 Aug 2021
Jess & James ~ so proud of you both! Much love xx
$50
Jess Keating

Ah Belinda, thank you lovely one. You were there during the early years! Appreciate the ongoing support. x

Jess Keating
Caren
Caren on 31 Jul 2021
What an inspiration you both are! Great job on this run, and all the love and support to you for the journey ahead x
$25
Jess Keating

Thank you Caren, really appreciate the donation and the support. xx

Jess Keating
Alex
Alex on 31 Jul 2021
Awesome work Jess!
$30
Jess Keating

Thank you Alex! That's really nice of you!

Jess Keating

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Created by Jess Keating
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This campaign started on 4 Jul 2021 and ended on 15 Aug 2021.