'Brain twins': Autistic mum reveals the benefits of parenting son with matching diagnosis

American-Kiwi mum Jess Banks views being autistic as an advantage to parenting, especially with her oldest son who is also autistic.

However, it wasn't until he was diagnosed that she realised she could be autistic too. 

"It was his first year [of school] and about a month after he started they called us in for a meeting. They sat us down and ... gave us this checklist of common characteristics of autism and Aspergers - which was still a thing at that time. All of it was checked off," she says.

"I went about [his diagnosis] the way I go about everything - research. Well the more I read and the more I read, the more I recognised about myself. It was just a constant revelation of 'that's me, that's me, that's really me'."

A couple of years after self-diagnosing, Jess' suspicions were officially confirmed at age 38.

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Jess is now 46 and lives on Auckland's North Shore after moving from the US state of Minnesota to New Zealand with her Kiwi husband and children in 2018 to be "closer to the whānau".

Her oldest son Connor, 18, is autistic while her youngest son Griffin, 15, has been diagnosed with ADHD (attention deficit hyperactivity disorder). They believe her husband is neurotypical.

Jess describes her family as a collective of superheroes.

"We have this formula in our household where Connor and I are the Kryptonians - like Superman and Supergirl - because we are so much alike but we are also our own worst enemies. Then Griffin with ADHD is The Flash - he's just here and then is gone. Then my husband is Batman - he's otherwise normal but he's using all of his resources to keep up."

Connor, Jess, Griffin and Cam.
Connor, Jess, Griffin and Cam. Photo credit: Jess Banks

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She says being autistic has been invaluable as a mother, but especially as a mother to an autistic child.

"Sometimes it's really basic things like if [Connor]'s getting agitated or upset or stressed out in an environment, I can figure out what in the environment is probably the cause of his distress. Like: 'oh wow when we came into this room it wasn't too loud but now it's gotten a lot louder in here'. Or 'oh there's a fan blowing directly on us, I wasn't paying attention to it but it may be bothering him'."

She says there are also practical upsides such as her super-sensitive hearing, which is "a really good thing as a parent", but also downsides such as her super-sensitive sense of smell.

"I also recognise patterns really well so I know routines that he's built or things that he does leading up to a meltdown and try to head those off." 

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Jess says there are "so many things" she loves about being a mother.

"I was an incredibly serious child and I was expected to be serious to some extent because I was really gifted - I was reading by the time I was 2 and the school district wanted me to skip three grades... I didn't really like hanging out with people my age. I thought they were boring and obnoxious, I would so much rather hang out with the adults, or younger kids or disabled kids… The older I got in some ways, the more childish I got and being a mum gives me an excuse to do some of the things and experience some of the things I didn't at that very serious child - that it's okay to be goofy."

She also loves being able to share her life with her children.

"When they like the stuff I like, it's golden, it's amazing to share that with them. They are hysterical children, they are so smart and so funny and their brains go in different directions to anybody else. They are hilarious to hang around with and they are really awesome people."

'Brain twins': Autistic mum reveals the benefits of parenting son with matching diagnosis
Photo credit: Jess Banks

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However, there are also some downsides to being an autistic parent.

Jess says she particularly struggled to find her place when she fell pregnant with Connor.

"I really didn't feel at home at the (early childhood education programmes) Mommy and Me and Kindermusik - I didn't feel comfortable at all around those people," she told Newshub. "I didn't have anything in common with them. I didn't have the same experience. I could have been really isolated and that would have driven me hard into postpartum depression."

However, Jess and her husband found support through some friends, who fell pregnant around the same time.

"They had their baby a year-and-a-half earlier and then she got pregnant at the same time as me so I not only had a friend, somebody to go through pregnancy with who had done it before but also we started playing games with them… that became my support group."

Jess says throughout her parenting journey she has also found support through the online autistic community, but overarching all of that she has her "amazing husband" who "fills in a lot of the gaps for me".

With Connor older now, they understand each other, but also know which buttons to push.

"Being 'brain twins' with him is amazing because we do understand each other in a way that nobody else does but also we can escalate each other because we know exactly where each other's buttons are. If we want to tick each other off we know just how to do it… We can literally push each other into meltdowns which is awful."

Jess and Connor.
Jess and Connor. Photo credit: Jess Banks

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Jess says she is "so grateful" to be autistic and it makes her exactly who she is.

"I definitely wouldn't be me if I wasn't autistic."

But many people don't believe her when she tells them her diagnosis because she doesn't fit the common stereotypes portrayed in the media of an autistic person.

"I'm very gregarious, I love people, I love talking to people, I love learning about them and I love learning about cultures... I get it all the time - when I say I'm autistic - 'you can't be autistic'. I don't fit their perceptions. I'll say 'why?' and they'll say 'cause you're so social and you're making eye contact, talking, you're too friendly, too empathetic, too whatever."

She says it's "incredibly invalidating" to have people tell her she 'can't be' autistic but she understands it's because not many people know the common characteristics of autism in women and non-binary people.

"If you say somebody is autistic, the picture that almost immediately comes to mind is a young boy, probably white," Jess says. "That's because it was white men doing the studies and writing the tests that were administered by white male doctors to white male children."

Autistic women often have fewer troubles making friends, are less restless, and have seemingly more ordinary interests.

Jess says she wonders how many "horse girls" are autistic but "nobody saw that as an anti-social fixation because everyone's like 'she's a girl and girls like horses'".

Many women are diagnosed as autistic later in life, with research showing it's often because they can often be better at "camouflaging" their symptoms.

"We have developed so many masking and coping mechanisms over the years that when you ask a question, there's the answer that we have worked our whole lives to overcome, and then there's the answer we have achieved," Jess says. "It can be really hard to find your place on those tests because you've spent your whole life trying not to fit on those tests."

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Jess believes another aspect of autism that is often misunderstood are meltdowns.

"People who don't know what a meltdown is, or know what it looks like, assume it's a temper tantrum," she says. 

"I get it, the screaming, the running, the thriving, all the displays that happen when my son has meltdowns. People assume it's terrible behaviour… behaviour is a response to your environment, your stimulus and meltdowns are that too. They are what happens after every possible exit from stress has been missed."

She explains that having a meltdown is like travelling towards a horizon. There are "signs and offramps" as you approach it, but once you get past the horizon the only option is a meltdown.

"Meltdowns have nothing to do with what they want. Meltdowns happen because they have no other way to express how distressed they are. The hard thing is that once a meltdown starts, there is only one way through it - and that is through it. If you have a kid who has a temper tantrum because they want an ice cream and you said 'no', you can give them an ice cream and it stops immediately. That is the opposite of a meltdown."

Jess explains that when girls, women and non-binary people have meltdowns, they can look completely different from boys.

"All the screaming and thrashing and all of that gets turned inward. You can spot it if you see a girl or a woman who is shut down, frozen to an unnatural extent - that may be a meltdown. We often lose our ability to verbalise."

But either way, she says people going through meltdowns are fully aware of what's going on around them and describes them as "awful".

"It's like having a fight with yourself and you are bound to lose this fight. When the meltdown wears out you feel terrible and exhausted, a hangover type feeling."

She says other people witnessing meltdowns can often be very judgemental, but she wants them to know most mothers are doing everything they can to help their child and do what's best for them.

"It's very painful to be judged on something that he can't help, that we can't help."