When did you know they were autistic?

Taking you back to when Jude and Tommy were diagnosed

I get a lot of messages from people asking about how I knew Jude and Tommy were autistic. Usually, they’ve recently started following us online. Their child will be much younger than Tommy and Jude, and I guess they’re trying to imagine what the boys were like at a similar age. When did I know they were autistic? What was it that led to us seeking a diagnosis?

It’s a story I’ve told many times. And considering it happened nearly 14 years ago now, I’m glad that retelling it so many times has helped it stay relatively fresh in my mind.

Some of it is a blur. I think the stress and worry of the years that followed have caused me to forget or maybe even block some of it out. Camera phones weren’t anywhere near as good as they are these days, and whilst I have hundreds of photos from those years, I wish I had more videos, documenting our lives like I do these days.

I do have both Tommy and Jude’s assessment paperwork though. And after a quick read of that and I’m transported back into that room where it felt like our lives were changed forever…

I’ll start by taking you back to 2009. Jude had been born the previous May, and we’d moved from London to a small town in Essex called Burnham on Crouch. It was his mum, Charlotte, who knew first, in the way that mums often do. She thought that Jude wasn’t developing quite like he should be. She was going to baby groups, making friends with other mums in the town we’d not long moved to, and to her the differences were clear. She knew deep down something wasn’t quite right.

Meanwhile, I was commuting to London for work each day, spending my evenings and weekends with her and Jude, living in blissful ignorance. When she decided to take Jude to see the doctor I was more than happy to go along with the response that he had told her. “He was born prematurely, he’s a boy, he’ll catch up”

It was the easy answer. The answer that I wanted to hear, rather than face the possibility that there might be something wrong with him. I cringe typing that phrase ‘wrong with him’ but I’ll be honest, that’s the type of language that was used back then.

“There’s something wrong.”

“Don't be silly he’s fine, there’s nothing wrong with him.”

As the months passed by and the gap widened further, Charlotte became more and more persistent. She wouldn’t let it go, whilst I was happy to wait and see. Everything would be alright. Because it had to be.

That summer we went on holiday to France, Jude was 15 months old. In the house next door to us was a German couple and their daughter. As we stood in our gardens and chatted, her face lit up as soon as she saw Jude. She wanted to come into our garden and play. Jude took one look and crawled away as fast as he could. She pointed at the cars and the boats outside calling them by name, she was curious, she interacted with her parents, with us, and desperately wanted to play with Jude. Meanwhile, Jude threw a ball in front of him and crawled from one end of the garden to the other, over and over again.

The little girl was a few months younger than Jude. From the moment I found that out I could focus on nothing else. Charlotte was right, I couldn’t bury my head in the sand any longer. It was suddenly so clear to me. We had to see professionals and find out what was going on. Find out what we could do to help our beautiful boy.

Charlotte went to see our GP for the third time shortly after getting home, pretty much refusing to leave without a referral. Within about six months, we’d worked our way along the various checkpoints of the system and found ourselves in a room for a potential autism diagnosis. A paediatrician, a speech therapist, and an occupational therapist plied us with questions and tried to engage with Jude. An hour later we left with an autism diagnosis, a few leaflets, and a promise that someone would be in touch.

Looking back, and knowing what I know now, it was obvious Jude was autistic. The lack of eye contact, the repetitive, singular play. The delayed milestones and the desire to be away from other children. The lack of sleep, the struggle with touching different textures. The way that he would very rarely ever show any response when we called his name. The inability (or want?) to point at things or follow what we were pointing at for him. The fact that Jude still had no language, and spent most of his time seemingly distant, off in his own world. The way his senses would suddenly be so overloaded that he’d scream or cry, whilst we looked on trying to figure out what was making him so upset.

But I knew nothing about autism. Neither did Charlotte. Nor did anyone else in our network of friends and family. Somehow, which seems impossible now, I’d gone 30 years without it ever being in my consciousness. Rain Man was my one cultural reference, but even then I didn’t know that Dustin Hoffman’s character was autistic, just that he had some kind of disability and was amazing at counting cards.

In the months that followed Jude’s diagnosis, I still didn’t really understand what autism meant, just that I’d come to realise Jude was different from the other kids his age. Autism, we were told, was the reason why.

When we left that room with our sheets of paper nothing had changed. Jude was still the same child he’d always been. Still had the most captivating smile, loving nature, and incredible eyes that communicated everything he felt. Yet, at the same time, everything had changed.

Now Jude’s life, his future, our future, all seemed so full of doubt. Before I knew for certain he was autistic, there was no doubt that all of the struggles he had right now would all pass. He’d catch up, it might take a little longer, but one day soon he’d be talking, running, playing with friends, and before we knew it he’d be starting school.

With Jude’s diagnosis, and what little I understood about autism at the time, suddenly all of that was replaced with a fear of the future. A future that I’d always taken for granted

What if he never learns how to talk? What if he can never make a friend? Will he ever understand what I’m saying to him? How will he ever cope at school? Will he get bullied? Will people make fun of him?

Each day my mind would spiral, fixating on more and more questions. Questions that had no answer. Questions that I never expected would need an answer. I felt lost. Overwhelmed. Heartbroken. Scared.

A little over three years later we’d be back in that same room, with three different professionals, this time with Tommy. This time we knew the process and what to expect. Knew the signs and traits of autism that professionals looked for (and that we were looking for months after he was born). Knew for sure that Tommy was autistic.

Just like Jude, Tommy rarely responded to his name or pointed to anything. His play was very solitary and routined. We were allowed to join him at times, but only if we stuck to whatever rules he had in his head of how the play was supposed to go. He was very rigid in his thinking, and still is really. He was more comfortable around other children than Jude was, but he had no interest in them. If he was distressed by them, or by noise he would take himself away and bang his head. It scared the life out of us the way he would head-butt the wooden floor.

He was on the move much sooner than Jude and would race from room to room in his walker as soon as he could stand. Once he was able to move Jude began to struggle more around him, no longer able to just get away from Tommy whenever he wanted.

Eye contact was inconsistent, and he loved building blocks. Making towers and knocking them down, or lining them up so they snaked across the room. And there were no words. He was 22 months old on the day of his assessment and there had still been no words.

When we were in the room with the professionals and they tried to engage with Tommy, he took himself away and went and stood in the toy cupboard, closing the door behind him. He didn’t want to be there, he wanted to hide away from the world. So did I Tom. So did I.

When they managed to coax him out of there he played for a while, flapping his hands excitedly when he was happy. After a while, as we were busy answering the paediatrician’s questions, he went and lay in the corner, pressing his face to the ground. Seeking sensory feedback.

In the weeks that followed that appointment, I felt crushed. It hit me harder than it had done with Jude. Those three years in between appointments had taught me so much about autism, about acceptance, and about making adjustments to our lives. Yet I’d also seen how little progress Jude had made in some areas, how much he’d struggled and how hard life was at times for him. In my mind, it meant that’s what lay in store for Tommy too.

All those fears, doubts and worries were now doubled. Two boys to worry about what the future held rather than look forward to.

That was ten years ago and there’s so much that has changed since then, whilst some things haven’t. I can still see some of the mannerisms and personality traits that were evident in the boys back then that are just as prominent today. Which isn’t a bad thing.

Take hand flapping for example. When Tommy and Jude flapped their hands back then I hated it. It was a visible sign of how different they were. An action that would surely make people point, stare, whisper, and maybe even bully them as they got older. Now, when they flap their hands, I love it. I know it as a sign that they’re happy, expressing their joy through their happy flaps. I no longer care what other people might say or think, and I’m certain Tommy and Jude don’t either.

Since then Tommy and Jude have both made lots of progress. We’ve had our ups and our downs over the years. Many highs and some extreme lows. Most of them I never could have predicted when I walked out of that room in 2013.

A lot of those big questions, the ones that I was so scared of, remain unanswered. But they no longer plague my thoughts day after day. night after night. I’ve learned to let go of expectations. To focus on today and worry less about the future. To focus on what I can control rather than what I can’t.

Jude and Tommy’s diagnoses were just the start of our journey. One that’s involved an incredible amount of learning, adjustments, growth, regression, fear, worry, love, and acceptance. The happiest of days mixed in with the sad.

If your child is going through or has been through an autism diagnosis you might recognise and relate to some of these feelings and experiences too.

And if you’re someone who's feeling like I was when I walked out of that room 10 years ago, or like I have felt at various stages since; hang in there. Give yourself time. Time to think, process, adapt and learn. Time really can and does change everything ❤️