Tuesday 30 May 2017

When did you know?

People have often asked us when did we know that L was on the spectrum and the truth is that we never really knew, not for sure anyway. We just knew that he was different to other children but as a baby and a toddler we couldn't put a finger on what the issue was.

L had always been a different child. He has always marched to the beat of his own drum and he still does.

As a baby L cried a lot, for no apparent reason, and nothing would settle him. This would be at random times throughout the day and night. He would be happily laying on his play mat and then start crying. And the crying would go on and on and on.......

L would be happy to lay on his play mat and stare at bright lights and fans for hours on end. But then on the other hand there were many days when he want to be constantly carried and cuddled throughout the entire day. He would go from one extreme to the other on a daily basis. The only way in which we could calm L was to either let him cry or distract him by looking at the trees around us. You could regularly find us walking outside our house with a screaming child at various times throughout the day and night.

He was an extremely routine based baby from day one and he would completely flip out at the slightest change to any of his routines. It came to the point that L's routines evolved into rituals.

L didn't sleep. Period. He started sleeping through at about 5 weeks of age and then abruptly stopped at 4 and a half months. L didn't wake specifically wanting milk or food, he was simply awake and no amount of coaxing him back to sleep would work. L could also have a ten minute power nap and be right to keep going for hours on end. And all these parents who talk about being able to transfer their sleeping child from car to cot or pram to cot, I envy you. If L was asleep in the car we kept driving! Asleep in the pram, no problem, the pram was parked in his room!

L rarely made or maintained eye contact, even as a baby. He would actively avoid making eye contact and if we or anyone else for that matter forced him to make eye contact, all hell would break loose.

We've now realised that L had stims as a baby and as a toddler however we didn't recognise them for what they were. One of the main stims that L did was shake his head constantly from side to side.

L's speech was delayed and by the age of 3 years he had approximately 20 words that he would say voluntarily. A three year old, on average, should have a repertoire of roughly 200 words. L was able to repeat words that we said, but these other words were never said voluntarily.

His interests very quickly became obsessions. He just wouldn't be interested in other toys unless they were based on superheroes.

When L was learning to walk he toe walked for a period of time, and he still does occasionally.

L appeared to struggle to understand others emotions and he was unable to respond appropriately to others. At times L was completely unaware of what was happening around him and he was blasé towards others when they were upset, angry or even happy.

L had tantrums like any other children, but they rapidly turned into meltdowns.

Whenever we raised our concerns, we were constantly told by medical professionals and early childhood professionals that all children do these things as the behaviours are a part of a typical child's development so we shouldn't be worried. We were told that L would grow out of the behaviours.

By the age of 18 months L had numerous medical issues and was under the care of a Paediatrician, an Ear Nose and Throat Specialist, an Audiologist and an Immunologist. Our life at that stage consisted of constantly being in and out of medical appointments. L's immunologist eventually said to us that all of L's blood results were inconclusive and that we would just have to deal with L's constant illness. He'd already been diagnosed as asthmatic and had had his adenoids out and grommets in. At 2 and a half years of age L had to have his tonsils removed.

It was shortly after L turned 3 that we again turned to our GP for assistance. At that point in time L was using quite a lot of key word signing and sounds to communicate his needs, he wasn't sleeping, period, and life was one very long and extremely loud meltdown.

Prior to one of L's routine appointments with our GP, he was in the middle of an almighty meltdown. Our GP was finally able to view L's behaviour. When the GP asked what had caused the meltdown, he was flabbergasted that it had started over L not being allowed to play on the road. This is when our GP began to take us seriously and again referred L our paediatrician.

That was the start of our Autism journey. The start of a new chapter for L.

During the Autism assessments with the paediatrician, speech therapist and psychologist, we very quickly realised that L had been presenting with ASD traits since birth but we hadn't picked up on them. Admittedly we also didn't realise that they were ASD traits as we'd been constantly told that there was nothing concerning about L's behaviour.

What I know now is that when the behaviour is ongoing, there is cause for concern. It is true that the majority of children at some stage in their development will line up toys, they will eat mud or dirt, they will smear poo on themselves, they will present with a stim of some description, they will toe walk and so on. However not many children OFF of the Autism Spectrum will do these behaviours long term. With L all of his behaviours lasted for longer periods of time, some are still ongoing, and the behaviours were much more intense.

My advice to parents who are concerned about their child's behaviour is to seek advice from a trusted medical professional and don't give up. We went into L's Autism assessment with the thought that if we were told that "no L isn't on the spectrum" we would accept that and move on. We had nothing to lose, everything to gain and at that point we'd already spent a lot of money trying to gain answers for L's ill health.

Fortunately for L, he was given an ASD diagnosis and the next chapter in his life could begin.

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