Being a first-time mum at 41 was daunting. Being a first-time mum to twins was a new layer of terrifying – thinking about it from a time management perspective more than anything else.
But we couldn’t wait to have two babies.
My husband Con and I were delighted when we welcomed a boy and a girl.
Our son Vassili was born two minutes before our daughter Lola in 2009.
As suspected, time management was an issue – especially when they both wanted the boob at the same time!
But I loved having two little buddies together.
The first few years of their lives were as hectic as you’d expect, but Con and I managed to navigate our path as new parents without any major hitches.
If you replayed any of those first few years now, I’d be able to spot the warning signs of autism a mile off, but it wasn’t until Lola’s speech hit a bit of a roadblock that we had any cause for concern.
She was super smart but her speech wasn’t forming – she’d babble away but it wasn’t where she needed to be.
Socialisation was also becoming a bit of an issue for both of the kids, but it was so easy to blame their behaviour on account of them being twins – we’d say it was typical ‘twin behaviour’, especially as my dad, who’s also a twin, recounted stories from his childhood. He said he didn’t talk until he was five as he was living in his own little twin world.
We took Lola and Vassili to see a paediatrician about their development and he told us it could be the result of, in his words, ‘bad parenting’.
To hear that was absolutely soul-destroying.
I knew in my heart it wasn’t bad parenting – I’m strict as buggery with the kids, but you can’t escape that niggle of guilt.
Lola was also walking on her toes – which can be a sign of autism – but her gross motor skills were otherwise perfect.
When the twins were three-and-a-half, we finally got an answer.
It was getting to the point where they were so immersed in their own little worlds, we couldn’t blame it on ‘being a twin’ any longer.
My daughter received the diagnosis first.
Lola has autism.
It was extremely painful, but I’m a pragmatic person and now I knew what it was I was dealing with, I could focus on helping her.
Con had a bit of a different reaction.
“It would be less painful if someone took my arm off,” he said.
Of course he still adored her, but he was worried about what this diagnosis meant for Lola’s life.
Just one week later, we took Vassili to visit a specialist as we were also concerned about his development.
I’d taken Vassili to the doctor a few months prior, but they dismissed his slow development as part of him ‘being a boy’.
But, of course, that had nothing to do with it.
I knew what the doctor was going to say before he opened his mouth.
Vassili also has autism.
Both my twins had been diagnosed with autism one week apart.
We had no idea what it meant for our family. And yes, our minds were probably filled with unhelpful stereotypes of what we thought being autistic meant. By autistic stereotypes, I mean having children who’d have constant tantrums and wouldn’t be able to have the same quality of life as a neurotypical child.
Autism is symptomatic so it’s not unusual to get a diagnosis when kids are much older. We were lucky we found out as early as we did.
My answer was to throw myself into it.
I’m a bit of a pit bull that way, very tenacious. I didn’t allow myself to have a grieving process over the twins’ diagnosis – I was speaking to the OT about what I could do to help their speech straight away.
It was no wonder Con was initially so upset. Prognosis can be such a negative experience. It’s like they try to prepare you for the worst.
But we were determined not to let negative thoughts consume us.
All we were hearing from doctors was that people with intellectual disabilities “won’t have independence” or “won’t get work” or “won’t have a normal life”. But this is where I call bullsh*t.
All evidence points to the more you put in, the more you get back.
I’d given up my job as an international air hostess and Con gave up his corporate job so we could look after the kids full-time. We were determined to give the twins the independent lives they deserve.
Once they were old enough, we enrolled Lola and Vassili in an Aspect school, which is a specialist school to help them achieve adult independence.
I quickly learnt that categorising autism is problematic. Every single child I’ve ever met who’s autistic is so different and we’re all on the spectrum, to a degree.
I also realised I desperately need my people around me. Con has been my absolute rock and is always the level-headed comfort I need on a bad day.
Having friends and family who understand that when Lola and Vassili act out, it’s in no way their fault has also been essential.
The hardest thing during our journey so far has been the judgement from other people.
People don’t realise that when one of the kids has a meltdown, it’s because they’re suffering internal trauma.
It’s a primal urge to stop the pain and sometimes, it comes out in this form.
People stare or eye roll, not understanding at all.
I’ve been asked so many times if I feel hard done by to have both twins with autism and my answer is a resounding no.
Other mums might worry their child won’t have any friends and Lola and Vassili will both always have a best friend in each other.
They love each other so much. Lola’s so feisty but Vassili’s much softer, and just adores her.
Lola is magnetic - people are just drawn to her. She loves music and singing. Her giggle is infectious.
Vassili loves anything to do with water - especially boogie boarding. He’s got the best crooked smile and loves words and writing.
They’ve taught me never to judge others as I’m already so judged myself when there have been cases of inappropriate language or tantrums in public.
And I always try to focus on the positives.
What I’ve been doing recently is keeping little progress booklets that I add to each week to celebrate the twins’ milestones. It can be big stuff like toileting progress or changes to speech. Or just little quirks they’ve developed.
I’ve found this really beneficial as although their milestones might take a little longer than most, it’s astounding how far they’ve come, and seeing it written down helps me celebrate them.
Their communication has come along so much, which means they can often verbalise and express their feelings better.
Autism is not a black and white thing - it can’t simply be categorised into high-functioning and low-functioning as people always tell you. It’s just living life.
And that’s what I try to remember when I’m going through a bad day.
Most of all, I always try to remember that everyone is dealing with their own challenges.
My twins may be autistic but it certainly doesn’t define them. And I want the same things for my children that any mother does: I want them be loved, have self-esteem, and be able to live independently.
That’s all any mum can ever hope for.
Anastasia is an ambassador for Walk for Autism (31 March - 7 April)
As told to Lorna Gray