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(UK) Boy regresses into autism; no reason given

Dec 9, 2023, Telegraph: ‘My son lost his ability to speak and belt out Humpty Dumpty as he once did’
If I didn’t have videos of my son Archie talking, I’m not sure I’d believe that he could. It has been four years since he last spoke, having been diagnosed with regressive autism – a condition I’d never heard of – aged four, in 2020. He’s now eight, and has lost his ability to speak, and belt out Humpty Dumpty as he once did, and play with his little brother and sister as I imagined he would.

I first noticed a shift in Archie when he was three. We’d moved from the UK to Barcelona (I’m half-Spanish), where I was starting a new job as an art teacher at an international school, and everything seemed hunky-dory.

He started at the school’s international nursery (in Spain, children start nursery before three), but it felt too big and overwhelming for him, so we moved him to a smaller one. Everything was in Catalan, and while he was happy to go in the mornings, my husband and I noticed him becoming quiet….

By the time we reached the end of 2019, Archie had gone completely quiet: the spark had gone from his eyes. It was like watching a boat drifting out to sea. We rushed back to England in panic mode, thinking that if we simplified life to just one language, things would return to how they had been....

It took until the following year, however, to finally get a diagnosis of regressive autism – a condition that can affect anywhere between 13-48 per cent of children on the spectrum, according to studies.

That diagnosis wasn’t exactly a help, but rather a ticket to nowhere. I remember the consultant blowing some bubbles into my four-year-old’s face and then nodding as if all were confirmed: “your child has severe regressive autism. There’s nothing you can do about it and it’s going to get worse with age. Next!”….

He’s fairly happy-go-lucky and sociable, which isn’t common among those on the spectrum, and he has no issues with textures of foods. He absolutely loves parties and being part of the group – we’re thrilled when he gets an invite anywhere – but he needs permanent supervision.

My husband and I have had to become virtually full-time carers by necessity; the longest job I’ve held down since returning back to the UK was three months. Youngsters on the spectrum often struggle to differentiate between what is food and what isn’t, so will end up eating crayons if you’re not watching constantly or simply biting into anything and everything.

We’ve found Archie in the middle of the night decanting whole cupboardfuls of food onto the floor; everything needs to be monitored to a high degree, whether it’s reading a book or simply watching telly....

In some ways, dealing with Archie’s condition has been made easier by his being my firstborn – I had nothing to compare motherhood to. Since having my second child Bertie, now three, and my daughter Jemima, one, I have been watching them like a hawk. I’m trying to lead as simplistic a life as possible to avoid any chance that what Archie has gone through will happen to them. Hearing Bertie speak is almost bittersweet, as he sounds just like Archie did when we last heard his voice.

The past five years have been a frantic scramble of desperate strategies to get our boy back. We’ve tried every speech therapist going, have thrown any money we had at help we thought might help him progress, which has left us in a difficult financial position.

There are times when he’ll make a sound, or give you a look, and it reminds you: there’s my boy. It’s what keeps you going, the hope. But to hold on to that level of anticipation as to whether something might get better if I do this instead of that is also exhausting. The strain on our family has at times been overwhelming….

For now, all of my focus is on helping him to follow the pastimes he loves, talking and singing to him as much as possible to help him keep forming sounds and words and giving him a loving, stable home.

It’s frightening to think about Archie at 18, and where he’ll be developmentally. I so desperately want him to become independent, even if it’s hard to imagine that day coming. Even so, I will never, ever give up on Archie talking again. As a mother, I just can’t.

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