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How Our Autism Journey Began

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I am a mum, simply a mum. I am a mum with a difference though: I have a 27-year-old son with autism and other health issues.

Diagnosis day was on 4th February of 1995 when my son Aston was diagnosed with autism at just over two and a half years old: a day that will be etched in my heart forever. We were called to a meeting with my son’s doctor and a number of the other doctors that had been monitoring Aston.

All these professionals were there to discuss our son, where had we gone wrong that it took so many professionals with the need to intervene and give their professional advice. Had we failed so miserably as parents? Our doctor started: ‘We feel we have undergone every necessary tests and assessments possible for your son, we are without any doubt in conclusion that your son has a condition called autism.’

It is a condition that will require specialist education and he will need to continue under my care. We cannot confirm if he will be manageable or if he may at some point need to go into residential care. As he has no real speech at present, sadly we cannot confirm if he will ever actually speak; often autistic children become selectively mute.

I would assume that if there is no real speech by the age of five then it is likely he will be a selective mute. And then I heard one asked: ‘Do you need some time alone to digest this information? Some time alone?’ My ears were ringing, my head was swirling and my stomach was churning.

I turned to my husband and at that point I see it, I see a single tear trickle down his face, he held my hand tightly, we were both mentally and physically drained. We had no need for time out; we were already aware in our hearts that our son was autistic, and yet to hear so many doctors say this out loud made it so very real.

My husband clenched my hand and looked at the doctor: ‘So what can we do to help?’ At that moment in time, I felt closer to him and my children, closer than ever before. We would do this, we would fight tooth and nail to get our son all the help he needed and we would see this journey through together, together as a family.

As we left the hospital the realisation sunk in. My mum was at home with Aaron, our eldest son, and we needed to share the diagnosis with them and everyone else. Would they look at us differently? Would people somehow blame us? This perfect handsome little boy had so many problems and it nearly all boiled down to that word. That, awful, confusing dreadful word, that word that had been mentioned way back when. Your son is autistic!

I was concerned on how the extended family would react. Everyone knew he was different. Family gatherings had already highlighted this fact. Our own family were not forthcoming in us visiting and who could blame them – it was never easy. With a so-called label would this make anything any easier, if it did why? How could they not tell what we knew already?

I just looked at that beautiful delicate little boy with the soft blonde curls and the dark, dark eyes. He was different but that just made him more needing. I was afraid that revealing a label would somehow allow them to be forgiving of their own actions towards him. Would I have acted any differently? I cannot answer this but I hope so, I hope I would have been more understanding and selective with my words when in the company of parents or in fact the child with a condition such as our little boy.

We had a diagnosis but in reality nothing had changed. We went home dispirited, we knew we had to fight but at this stage what fight did we have in us? Could we really continue as we were?

A diagnosis but not a prognosis, we needed to build our own happy ending and at this moment in time it seemed damn near impossible. We were both numb. We could not even discuss it fully with each other, a weight was lifted but at the same time a cloud had been formed. Our future was unclear and what we hoped was to be informative just left us with more questions.

Today was the day that altered the rest of our life, but in fact that tear, that single tear was the floodgates of so many more to come. That was the start of our autism journey.

Dawn Avery is mother of two and proud to be having had both boys. She is honoured to have received Diana Awards. 

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