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The emotional side of an autism diagnosis

autism diagnosis childrenShould a total stranger take a quick glance at my 8-year-old daughter, they would not necessarily notice anything amiss.

At best, they would see a happy child with a huge smile and possibly an over exuberant personality.

At a second glance, they might take into account the fact that my daughter might be slightly detached from the whole scenario or might have a slightly puzzled or even blank look on her face. But nothing more in those fleeting or casual glances.

Yet as we complete her autism diagnosis process for the second time, I still recall the words of an earlier GP that it would only take 20 minutes of anyone’s time to see  something was different with her.

It does not take much scratching below the surface to find that behind the beautiful smile, lies a complex personality with a different processing ability that leaves me bemused in the best case scenario, and completely puzzled and perplexed in other situations.

The suggestion of the “A” word first raised its ugly head when she was about 18 months old, and soon became that unwelcome, but ever-present, white elephant in the room.

By the time she was three, she was an angry, non-verbal child, usually to be found in the far corner, away from her peers and prone to massive, physical outbursts without any perceived provocation.

However we had a paediatrician who did not believe in rushing a diagnosis and it was not until she was five that she was formally diagnosed. It was done then primarily at the school’s insistence who wanted her suitably pigeonholed.

On my part, it was also done to protect my child and to stop her being written off as a bad child, dutifully consigned to the “too hard to handle” basket.

However even then she could not be suitably categorised as to where she fell on the autism spectrum.

So she was given the catch-all diagnosis of pervasive development disorder not otherwise specified (PDD NOS). At the time and given the inconclusive diagnosis, I got her diagnosis subject to review.

Shortly after the diagnosis, we moved to a smaller town and a much smaller school, and almost within months I had a new child. The speed at which she developed was almost incomprehensible and gradually the stress and almost despair associated with her early years began to fade into the background.

Interestingly I had assumed that because autism was now a known quantity in some form, even if less obvious than previously, the second assessment process would be fairly straightforward, at least on the emotional front.

And on the whole it was, except for the re-discovery of that little nagging voice in the back of my head that had still had not entirely given up on the notion that they may have got it wrong the first time.

The thing I find harder to comprehend these days is that like that random stranger, I also see a very happy, settled child with this most beautiful smile and this amazing ability to make other people smile. Gone is the angry, non-verbal toddler where meltdowns were the only consistent emotion displayed. In her place is a child who appears switched on, who wants to please people and who does not stop talking.

So while there was not the same initial emotional outburst of anger or despair as there was that first time round, there was still some element of shock which I was not entirely prepared for. The thing about autism is that it is a lifelong condition with no magic cure.  While therapy and counselling may go a long way in helping close the gap between your child and their peers, it does not erase it, nothing will.

The first time, I found that one of the hardest notions to grasp. At the time, I thought her life had been confined to one neverending long black tunnel with no hope of there ever being any light at the end of it.

Plus from a parent’s point of view is the gradual realisation that you have a far greater degree of responsibility with regards to your child’s wellbeing than what is normally involved in child rearing. Take my daughter out of the safe world which she has created for herself and you have an anxious, stressed child who cannot cope with any variable she has not personally factored into her equation. So on the really bad days, I would find myself stuck in that same dark tunnel.

But one thing I have learned over the past few years is that there is light at the end of that long tunnel.

She has come so far in the past few years, to the point that she is almost unrecognisable from the angry, non-verbal child she once was. So as she continues to thrive, I can now also allow for hope.

In the autism stakes, we are one of the lucky ones. My daughter’s diagnosis is now that of high functioning autism spectrum disorder so I know I have no right to complain as we are one of the very fortunate ones. I also know that I am lucky enough to hope that she will still lead her own life on her terms, even within the parameters of the autistic world.

Now that the shock factor has passed, I guess I am finally coming to terms with the reality that autism is in fact here to stay.

I am also hoping that I have learned to finally accept it.

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