Last month, Mienna Jones got new chairs and tables for her childminding business. But while her charges were pleased with their new equipment, it was the cardboard packaging that obsessed her nine-year-old son Dexter.
‘I’m not allowed to touch the boxes,’ she says. ‘When I tried to recycle one, he screamed that I’d ruined his life and refused to come out of his room all day. He gets very fixated on things,’ 46-year-old Mienna says wearily. ‘And at the moment his fixation is cardboard boxes.’
As well as fixating on objects, Dexter has also always taken words at face value.
‘If I say, “Goodness, it’s raining cats and dogs,” he’ll say, “Mum, there are no cats and dogs coming from the sky,”’ explains Mienna, who lives in St Albans, Herts. ‘You have to be careful how you word things because he takes it literally, and perseveres with the idea.’
There are sensory issues, too. Just the smell of his mother bringing a cup of coffee into the room is enough to make him retch.
Last month, Mienna Jones got new chairs and tables for her childminding business. But while her charges were pleased with their new equipment, it was the cardboard packaging that obsessed her nine-year-old son Dexter (pictured)
Already these observations will be ringing familiar, worrying bells with parents of children with autism. Along with anxiety and insomnia — which Mienna can also tick on her son’s list — Dexter sounds like a textbook case.
Those diagnosed can access extra support that can help mitigate their symptoms, especially at school — but two and a half years since Dexter was put on a waiting list for an assessment, Mienna is no closer to knowing for sure.
‘I’ve said we’d jump if we were put on a cancellation list but there’s been nothing,’ she says. ‘It’s been devastating. I feel we’ve been failed by the system.’
So far so familiar. Woefully long waiting lists are a common lament among autistic children’s families, and it’s something that the National Autism Society has been highlighting for years.
But in one area of Dexter’s care there have been no delays whatsoever. In the specialist field of gender identity he has received a swift and efficient service.
For, although you could never tell from his photo, Dexter was born a girl, called Talia. At age two, he became convinced he was a boy; at five, he started living as one.
With the backing of his parents — Mienna is married to Dexter’s father, Ollie, 57, a painter — his GP and teachers, he was referred, aged six, to London’s Tavistock Centre, an NHS clinic for transgender children, where after waiting just eight months, he was diagnosed with gender dysphoria — a condition in which sufferers experience distress at their biological sex.
For, although you could never tell from his photo, Dexter was born a girl, called Talia (pictured). At age two, he became convinced he was a boy; at five, he started living as one
He became one of the youngest children ever to be diagnosed, and has since received sessions every month or two — via Zoom, during lockdown — with a psychologist at the NHS’s flagship Gender Identity Development Service.
His name already changed by deed poll, should Dexter continue to identify as a boy, he could soon be given hormone blockers to delay the onset of puberty, paving the way for him to biologically transition to a man.
But while professionals in this increasingly contentious arena have been keeping a watchful eye on Dexter, his mother believes his other behavioural needs have been all but ignored.
Which is troubling given the long-established link between transgender children and autism: children with autism are believed to be four times as likely to be diagnosed with gender dysphoria.
In 2018, a report compiled by Tavistock’s former governor David Bell revealed its own staff were worried children were taking up a ‘trans identity as a solution’ to various problems, including ‘a very significant incidence of autism spectrum disorder’.
Child psychologist Dr Kenneth Zucker has said the autistic trait of ‘fixating’ on subjects could convince children they were the wrong sex: ‘It’s possible that kids who have a tendency to get obsessed or fixated on something may latch on to gender,’ he said.
Meanwhile, autism expert and clinical psychologist Dr Sally Powis has said that, while there are undoubtedly cases of autistic teenagers with genuine gender dysphoria, if ‘you know you’ve been different since you were a small child, there’s the possibility you consider it’s your gender that’s the issue, rather than autism.’
More girls now want to transition than boys, but Dr Powis said teenage girls on the autistic spectrum who bind their breasts might simply be trying to express the feeling that ‘I’m anxious about all this stuff happening to my body and I don’t know how to handle it’.
So, given that Dexter recently told Mienna he might not be a boy after all, does she think this could be the case with her son? Could he actually be a very disturbed little girl called Talia, who’s not getting the right treatment she desperately needs?
As Dexter inches ever closer to puberty, should both possibilities not be urgently explored? And if he does decide to become a girl again, what impact will the last five years have had?
A loving mother, Mienna pauses before responding, knowing better than most that there are no easy answers on the increasingly polarised subject of transgenderism.
‘People have said to me, “If you think he’s autistic, could gender be another obsession?” I don’t know, because I’m not in his head and not qualified to make those links,’ she says.
‘He expressed such a strong desire to be a boy from the age of two. I don’t know if that is autism or genuinely gender dysphoria.’
She recalls the first time Dexter professed doubts about being a boy, in early 2019. ‘He was very distressed. He said he felt he wanted to be a girl but was embarrassed.
‘He said, “The problem is I’m older now and everyone will ask questions. It’s not the same as when I went from Talia to Dexter, because I was little,”’ says Mienna. ‘I was heartbroken. My biggest fear is that having said he’s Dexter, he feels trapped in this situation.
‘I told him I’d love and support him whatever and make the ride as smooth as possible, but it’s going to be bumpy, isn’t it?’
Indeed it is. I first spoke to Mienna three years ago, shortly after Dexter had been referred to the Tavistock. A delightful child who dreamed of running in the Olympics, my overriding impression was of a little boy finally comfortable in his own skin.
Today — half a foot taller but still boyish — he shows off the rainbow coloured face mask he wears to protect him from coronavirus and tells me he’s enjoyed jumping on his trampoline during lockdown.
But his friendly demeanour belies an inner torment that seems to have escalated since we first met.
Meanwhile, the transgender movement has been gathering pace. Demand at the Tavistock Centre, the only NHS clinic of its kind, has soared by 3,000 per cent in the past decade. In 2009, just 97 children aged from three to 18 were referred. In 2018/19 there were 2,590 referrals — 1,740 girls and 624 boys.
Ironically, Mienna stresses that it was at the Tavistock where it was first flagged up that Dexter might have autism. ‘Tavistock staff have always felt there was something else going on with Dexter that needs to be identified to understand what’s going on from a gender point of view,’ she says.
They referred Dexter to Hertfordshire CAMHS (Child and Adolescent Mental Health Services) in the summer of 2017 for a ‘Tier 3 Assessment’ to explore his anxiety. Tier 3 is the second most severe on a grading scale of treatment in which Tier 1 signifies a child needing support at school and Tier 4 requires inpatient provision.
CAMHS claimed Dexter was only Tier 1 — meaning support through school, which Dexter was already receiving, was warranted.
Mienna eventually persuaded CAMHS to treat Dexter as a Tier 2 patient, which involved an appointment with an educational psychologist with one of CAMHS’s partner organisations.
‘After 45 minutes, I realised I had to point out that my child was born a female. When she looked back at her notes, I asked “Surely this should be at the top? Isn’t this information you should know?”
‘She said something to the effect that my son was a “hot potato”, with so many emotional needs nobody knows where to start. I broke down in tears and said, “Please, could somebody just start somewhere?”’
At Tavistock’s request, Dexter’s GP had put him on a waiting list to see a community paediatrician for a preliminary appointment to see if he could be assessed for autism. The 90-minute appointment took place five months later, in December 2017, at a children’s centre in St Albans.
Afterwards, Dexter was prescribed melatonin for his sleep problems and put on the waiting list for an Autism Diagnostic Observation Schedule (ADOS), an assessment of communication, social interaction and play to determine whether a child has autism. Mienna is still waiting, beside herself with worry.
She says Dexter has never been an easy child. As a baby, he slept four hours on a good night ‘but could stay awake 48 hours, which meant I didn’t sleep either’.
The obsessions were there at the start, too.
‘Aged one, he would have watched Peppa Pig around the clock if I’d let him, but children love Peppa Pig, don’t they? Then he started touching everything with his tongue. To get him to try on shoes, he’d have to lick them first.’
When Talia became convinced she was actually a boy, Mienna just assumed it was another phase. But this obsession seemed to stick. Dresses and dolls were rejected and her curls were cut short.
Then one day, aged five, she came running in from the garden with an announcement: she was a boy called Dexter — a name she admired from a boy at school — and that this was who she was going to be from now on.
And so she was. Her school and classmates were all totally accepting of the situation. In January 2018, Dexter became distressed when, preparing for a holiday to Barbados, he saw in his passport he was still called Talia and pictured as a girl. Mienna changed Dexter’s name by deed poll so he could get a new passport.
When Talia became convinced she was actually a boy, Mienna (pictured) just assumed it was another phase. But this obsession seemed to stick. Dresses and dolls were rejected and her curls were cut short
The following month, Mienna removed the seven-year-old from his local primary — not because staff or pupils had handled Dexter’s transition badly but because everyone there remembered Talia and ‘Dexter wanted a fresh start’.
Meanwhile, as she waits for Dexter’s autism assessment, the overriding impression she gets from paediatric professionals is that her child’s mental health is being dealt with by the Tavistock and therefore they shouldn’t interfere.
‘They say Dexter is being dealt with by “the best” already,’ says Mienna. ‘I’ve told Tavistock, who say they’re flattered, but they deal with gender identity — they’re not specialists in autism.’
Worryingly, recently Dexter has started to show signs that he may be less sure about his gender identity than he used to be. The announcement came one night in February 2019. ‘He was so upset as he said, “I think I want to be a girl. I don’t know. I’m confused.”
‘Concerned and heartbroken, I promised we would love and support him whether he lived as a girl or a boy.’
Did she feel guilt, given that just a year earlier she’d changed Dexter’s name by deed poll, legally validating her son’s decision? ‘I questioned whether it had been the right thing to do,’ she admits, but insists: ‘It was the right thing to do at the time because he was so distressed.’
Last month, Dexter again professed doubts about his gender. ‘He said he didn’t know if he felt like a boy or a girl,’ says Mienna. When we last spoke, Mienna was resigned to the fact that hormone blockers — which can be taken from the age of ten — would be available to Dexter to spare him the agony of an unwanted puberty. But Dexter is ten in November . . .and suddenly, the decision doesn’t feel as clear cut as it did.
What she does believe, however, with absolute certainty, is that his potential needs as a child with autism should take precedence over his gender identity. ‘They need to be addressed so he can have all the tools to make the best way into adulthood — whether that’s as a boy or a girl,’ she says.
Thirty months since his referral and there is still no sign of an appointment that could diagnose him with autism. Having heard nothing since September 2018, Mienna chased Hertfordshire NHS Trust last December. ‘I was told Dexter should be assessed very soon. I called them again in March but nothing has happened. I know the NHS is underfunded but I am frustrated.’
A spokesperson for Hertfordshire Community NHS Trust said: ‘Assessments for Autism Spectrum Disorder (ASD) require close face-to-face contact between the child and the clinician. The measures necessary to prevent the transmission of Covid-19 (including the wearing of face masks where social distancing is not possible) mean that ASD assessments are currently suspended.
‘We are working to agree other ways to carry out ASD assessments in a way which still meet nationally agreed guidance. Whilst we cannot discuss individual cases in detail, we will continue to support Dexter and his family during this time.’
In reference to Dexter’s CAMHS’s referral, a spokesperson for Hertfordshire Partnership University NHS Foundation Trust said ‘we always seek to provide the highest quality care and experience for all our service users at all times’.
Our interview nearly over, I ask nine-year-old Dexter what gender he feels he is.
‘I feel like I’m both. I’m Talia, but I’m Dexter too,’ he says, shocking his mother with his reference to the girl he sought to obliterate aged five and has barely mentioned by name since.
A far from clear-cut story, then, and one Dexter and his mum have little hope of navigating without all the support he needs.