Autism: ‘Takiwatanga’

 

Takiwatanga
A Letter to My Daughter

 by Anon 

 

Dear Daughter,

Do you remember when you were seven and you had all those invisible friends? On the way to school, you told me about the fairies that helped you in Maths. Once we went to the forest and you made friends with a pack of invisible dogs, who came home with us and stayed for a week. In your bedroom, you had invisible fairy kingdoms. It was a huge transitional time, you were settling into a new school and I had recently separated from your dad. Your invisible friends nurtured you, when you were feeling vulnerable.

It was also an act of proactive resilience. Friendships didn’t come easily to you. When you were a toddler at soft play centres, you would sit with us, rather than play with other children. We used to walk over to the play area, holding your hand to encourage you. It was like persuading the moon to orbit Jupiter. Your gravitational pull was to watch from the sidelines.

Looking back, it was clear that you were camouflaging amongst adults. My mum always said you were, ‘born with an old soul’ - as if your childhood was one large waiting room for young adulthood.

At the time though, we were worried about you: sleepwalking, meltdowns, physical and emotional aggression and very low self-esteem.

Aged seven, you had your first CAMHS assessment. All those child-centred questions bombarded you but you answered everything with sweet, tactful acquiescence. Everything was fine, nothing was wrong - smiling, nodding like you were taking a test.

The CAMHS report came back a few weeks later, littered with typos and inaccuracies and a rather cryptic generalised anxiety diagnosis. Those professionals clearly hadn’t been asking the right questions or frankly even listening.

There was nothing generalised about your anxiety, it was specific. You were scared of the ocean; those big roaring, crashing waves made you cup your hands over your ears on holiday. Scooby Doo terrified you. Even when the baddies took their masks off, you never got the algorithm. You hated surprises or spontaneous trips, you needed advanced notice. The smell of cooked broccoli made you nauseous.

By the end of year six at Primary School, you’d been labelled with anxiety, social panic and depression and endured two separate programmes of CBT therapy. The school nurse concluded that you were ‘resilient’ because you had found five things to do in the playground by yourself when you had nobody to play with: hopscotch, running, skipping, talking to lunchtime staff and reading.

One of your CBT therapists was determined to cure your growing agoraphobia, and after one particularly warm February half-term spent wholly indoors, I too was also desperate for a solution.

The therapist used a desensitisation technique, where you were exposed to your fear gradually, over time. For some bizarre reason, she chose Tesco Extra as your ‘golden oracle’. I thought perhaps we’d start with the corner shop but she went straight for a supermarket averaging 70,000 square feet (which is, roughly the size of 25 tennis courts or a third as big as the area occupied by the aerial roots of The Great Banyan Tree!). Nothing like cutting straight to the chase!

There were five steps before achieving Tesco Extra ‘nirvana status’: Step 1 was standing outside Tesco; Step 2 was shopping with mum; Step 3 involved diverging from mum to find one item; Step 4 meant buying one item independently; Step 5 was an unchaperoned mini-grocery shop.

You were discharged before I realised you had hoodwinked her. You lied to her all along because you didn’t want to go into Tesco Extra after all but pretended you did to ‘make her go away.’ Intrigued and rather baffled, we chatted some more. It transpired that you felt she was disingenuous, saying “she just wanted my anxiety to go away.’

That sweet acquiescence had given way to being economical with the truth. However in this case, it was justifiable self-protection from a professional obsessed with ticking off a checklist.

By the summer term, you were threatening to hurt yourself and still not leaving the house. After numerous trips to the GP and long chats with the head teacher, who suggested contacting a private Educational Psychologist, we raided our savings.

At school you were a ‘model pupil’ - hardworking, polite, compliant and quiet. So there were no grounds to refer you to a school-based Educational Psychologist. I thought about road traffic accidents where the paramedics assess the scene, looking for the quiet, unresponsive ones. We needed help - and quickly.

I don’t believe in fairy tales but the day Rachel, the Educational Psychologist came into our lives, our lives changed forever.

We often talk about ‘life before Rachel,’ and ‘life after Rachel’ in hushed, mythical terms. She spent a whole afternoon with us, promising to ‘leave no stone unturned.’ It was liked being interviewed by Oprah. We were assessed separately.

I remember sitting in the garden answering questions about my childhood, parents, pregnancy, childbirth, mental health, with your childhood under intense scrutiny - but always in a gentle, non-judgemental way.

The experience was incredibly cathartic (like a Nicholas Sparks novel, where the hitherto unfathomable plot suddenly unfurls to make complete sense). All those years of mental health professional checklists, fruitless CBT sessions and agoraphobia, tinged with meltdowns were finally going to make sense. You said afterwards that you immediately felt comfortable with Rachel, that you let your mask down and spoke freely for the first time. You had never said that before.

Three weeks later, we received a report with no typos or inaccuracies. It simply stated that all your quirks, and social and emotional regulation difficulties were part and parcel of Asperger’s. But it was said with the grace of Oprah, complimenting you on your hyperlexic love of writing and reading and mature outlook. It didn’t feel like a death sentence, more a holistic, contextual report with a new, neurological explanation.

A year on from your diagnosis, autism lives amongst us. But it was here from the beginning, just hidden, mistaken for something else.

It’s common for girls to be diagnosed with eating disorders or other mental health conditions before discovering autism. According to the National Autistic Society (NAS), only a fifth of girls with autism in the UK were diagnosed by the age of 11, compared to half of boys. Many women remain undiagnosed until later on in adulthood. This is partly due to an inbuilt diagnostic bias towards a male presentation of autism, often overlooking the subtle cues of female masking, where autistic traits can be hidden in daily life.

We’ve come a long way. You have an ‘autistic-radar’ for other autistic children and teenagers, like some invisible wavelength. But you always speak with empathy and kindness: ‘they struggle, like I do.’

In some ways, the recent lockdown wasn’t a huge challenge for you. Remote online learning suited you; you learned at your own pace, without the annoying disruption of other children in the classroom. In addition to school work, you read over thirty novels and wrote various short stories, novellas and have now started a novel.

The interesting part has been your burgeoning political awareness. The Black Lives Matter movement has galvanised your inner sense of injustice and has led you to challenge classmates who posted, ‘all lives matter,’ comments. I am really proud of you for the way you handled this; asking them about why they thought this, and discussing it with them before you decided whether you could remain friends. For you, this really is a black and white affair and you stand against all racists. As you are also questioning your sexuality, you will not tolerate homophobia in any form.

Maybe all those years of feeling separate - sitting on the sidelines at the soft play centre; the lonely hopscotch in the playground; the invisible friends - have culminated in a recognition and understanding of feeling different. And with that, comes a desire to fight to protect others; those who are ridiculed or attacked for their skin colour or sexuality.

I wonder if you will lead protests on the street or write powerful polemics, denouncing prejudice and protecting civil rights.

The Maori refer to autism as “takiwatanga,” meaning in his/her own time and space. What a beautiful, sensitive concept. May you always remain in your own time and space.

 

Love Mum always xxxxx

 

 

 ♥   May you always be free from professional checklists;

 ♥   May you always be seen as someone with autism, not just autistic;

 ♥   May you still find invisible friends, if you need them;

 ♥   May you always follow your own gravitational pull;

 ♥   May you only enter Tesco Extra, if you want to.

 


 

Recommended further reading:

  1. How to Be Autistic by Charlotte Amelia Poe.
  2. Can You See Me? by Libby Scott and Rebecca Westcott.

 

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