Four years. Three assessments. Depression. The fight we shouldn’t have to fight for our children – how I got my son diagnosed with autism and why I never gave up.

When you are facing the autism diagnosis battlefield it can be terrifying.

PART ONE

I am a mother to a boy who is ten years old and has autism, ADHD, sensory processing disorder and speech delay – which these days seems to roll effortlessly off the tongue.

For the first five years of his life, I repeatedly got told there was nothing wrong with him and received narrow-minded comments like ‘Why are you getting him diagnosed so young, I have knickers older than him, he might grow out of it’.

No. He won’t.

I can’t tell you how I knew Jake, (my son) was autistic because I don’t come from a professional background in that field, I haven’t studied autism or neurodiversity, and I hadn’t seen it anywhere else; I just knew.

I knew from when he was a baby, I would say around 15 months old and he was no longer just a baby that never slept, he was a baby that never slept unless I did everything exactly the same way, in the same order, every day.

I would scream through gritted teeth and tears rolling down my face to any health professional who was telling me I was going mad, that HOW does he know if I’ve missed a part of the routine out, he is just a baby and SHOULD sleep when he is tired, but he isn’t because he knows something wasn’t in the right order and now he is awake – for the rest of the day.

Madness doesn’t come close to what I went through in this entire process.

Let’s start at the beginning.

I began to take photos of everything to prove Jake was doing all the things I was saying he was.

At first, my husband Simon, couldn’t see or understand what I was seeing and that was beyond frustrating. When your partner does not see that there is anything wrong, how the hell am I going to convince a professional?

I was on my own, on the floor with exhaustion and hitting my head constantly on a brick wall.

When the day came and I had finally persuaded my doctor (who was a doctor that came to our village every two weeks and had taken me weeks to see her) to put Jake forward for an assessment, I was over the moon.

I had a glimpse of reassurance that I wasn’t going mad or acting like an overbearing first-time Mum (which I saw once was written on my medical records – that crushed me), and there might be a chance my mother’s instinct was spot on.

Simon couldn’t understand why I was so happy that we were waiting for an autism assessment, he thought this would all go away at the first hurdle and the fact that it hadn’t wasn’t a positive thing at all. He didn’t want his son to have anything wrong with him, but I did.

Because then I was right and sleep deprivation wasn’t taking over. Jake deserved to know what was happening and why, and so did we.

As the months passed by waiting for the assessment, Simon saw more and more of what I was seeing. I was with Jake 24/7 so I had the advantage point, I never had a break, and no one ever took him for me so I could sleep or rest, it was Jake and me - day in, day out.

Simon began to see the rows of cars Jake was forming and if you took one away he would have a meltdown, the daily task of rearranging the cupboards and putting it all back in the same order again, the coming into our room every morning and took bits and pieces out of my drawer, and lined it up the same way and how I had to get him down for a nap was like nothing he had ever seen before.

Jake never slept on his own so even on his naps I was with him. I would have to sit on the bed with Jake in between my legs, his head on a cushion and I would hold his bottle in his mouth while he drifted off. It wasn’t that simple though; it was the most stressful part of the day.

Like I said if I missed a part out such as walking into the room and shutting the door differently – he wouldn’t sleep. If I glanced up and looked at him and we made eye contact, not only would he not sleep, but he would also be awake for the rest of the day, it was game over.

I used to have to hold my head down the whole time and my neck would be on fire, in intense pain.

If his milk started to run out and I had to change bottles, I would need to do this without disturbing him and without looking at him. If I didn’t have another bottle next to me, I would frantically be texting Simon to bring one up to me ASAP before his one ran out and if he got to the end of his milk and was sucking on air – game over yet again.

Time and time again it would be game over and time and time again I would be in a ball on the floor crying, sometimes hysterical, because I knew I wasn’t getting any kind of break (even if it was sitting on my bed with him in between my legs for half an hour) and my next chance of trying wouldn’t be until the following day – a very long 24 hours away.

Another failed nap time and another emotional day.

I don’t blame Simon for not seeing it or agreeing with me at first, he was at work every day working long hours and when he came home I was a crazy woman running on an hour of sleep a day with no one else to talk to apart from him – to him I was losing the plot and telling him that I saw a white rabbit running across the bed because I was hallucinating, most probably didn’t help my situation.

By the time the assessment rolled around I was desperate. I was empty and just surviving daily, trying to be the best mother I could be to Jake. I needed help, I needed someone to believe me, I needed support, I needed someone to hold me and say, ‘I believe you’.

Part of the assessment was a lady coming to the house and watching us.

When you are functioning on air and madness this is possibly your worst nightmare because paranoia creeps in and tells you they will monitor you and write down what a terrible job you are doing, and they will need to contact social services immediately.

Ridiculous questions will flood in –

‘Will they take Jake away from me?’

‘What if I am making this all up? What if it is a lack of sleep? They might think I am mad and section me!’

And it goes on, on a loop, round and round your mind until you want to scream STOP.

The lady came and she was lovely. She asked questions, wrote things down and watched us but mainly watched Jake, how he acted when someone was in the house and the things he was doing.

Jake hated (and still does) people coming into the house. But it helped the assessment because she could see just by her being present what it was doing to Jake and how unhappy he was. He would frantically make rows of things, keep doing the same things over and over and he was craving order so he could make sense of why this person was watching him, why a stranger was in our bubble.

When she was leaving, she put her hand on my shoulder and simply said ‘I agree with you, I can see it and I will write that in my report’.

I shut the door, and the tears came thick and fast.

I wasn’t going crazy, someone else saw it too, this was pure relief and for the first time in months, I melted into the floor. Jake came over to me and we hugged for what felt like an eternity.

I whispered in his ear ‘Keep being you and I will keep fighting, I promise’.

Afterwards, I thought the next part, the part where they watch him in a controlled environment, i.e. a room at a clinic, would be easy, surely, we had this.

I was wrong.

I was so terribly wrong.

Part two coming soon…