April is autism awareness month
Day 25 – Diagnosis
On April 25th 2007 Mark, Dylan and myself attended a local children’s centre and completed an assessment where Dylan was officially diagnosed with autism. That was ten years ago today.
I’m not sure how I feel about that really; maybe a bit overwhelmed.
Ten years is a long time.
Prior to April 25th 2007 Mark and I were on very different paths as parents and held very different beliefs about Dylan and his development. We were both concerned, primarily his lack of speech, but we both responded to this in different ways and invariably had differing coping methods.
I have always been very proactive; When I’m concerned I research, I read, I leave no stone unturned no matter how upsetting the information gained or difficult the lesson learned.
I thrive on knowledge and believe that information is power. If a person has enough information then they can make informed choices and there will be an opportunity for a reasonable decision to be made, even in the worst of situations.
‘Why wasn’t Dylan growing and developing like he should in the tens of books I had read on pregnancy and child development?’
‘What are these phrases that I am hearing thrown into conversations with professionals?’
I Googled everything.
Mark is the exact opposite;
‘why worry about things that haven’t happened yet?’
A self-preserving mentality;
‘why waste time and energy searching for information when you don’t even know what your options are? Dylan is Dylan, he’s happy. He will be fine. He’ll start talking. Stop worrying.’
I don’t remember what the weather was like on the morning of 25th April 2007, I wish I did.
I don’t remember what I wore or any of the details of the journey to the clinic or the finer mundane details of that morning. I wish there was something about that day that I could remember other than the feeling of intense nausea in the pit of my stomach.
We arrived at the clinic and were met by a play worker who knew Dylan from frequent home visits in the preceding months. She took Dylan off for a play and Mark and I spoke to the doctor with Dylan’s nursey teacher present.
Same old questions, how was his birth, any pregnancy problems, Apgar scores, when did he sit up, when did he walk, question after question…. Did they not read his ever growing bundle of health notes?
It took half hour to answer all the paediatricians’ questions before Mark and I were sent out for a walk so the panel could discuss their findings and come up with Dylan’s score.
A twenty minute interval felt like an eternity. Mark and I both stifled by the awkwardness of the situation as if we were on a dodgy first date. Both making small talk and feeble jokes as if we had just met, however our subject matter was our mutual children or household bills.
Dylan happily amused himself with some food matter that we had brought with us as a pacifier, unaffected apparently by the distinct uneasiness in the air.
On returning to the clinic the paediatrician wasted no time in confirming that Dylan’s score resulted in him being labelled as being on the autistic spectrum.
She was not making any plans to see Dylan’s again but would be happy for him to be referred back to her. I remember asking her what we may need to refer back to her for, she didn’t really answer me.
I don’t really remember what else was said; Mark and I were assured that Dylan’s would be found an appropriate school and that we were to trust the professionals. We were told that Dylan would have a special needs health visitor. Oh and for us to go and have a good day.
It felt very blasé.
That’s it; before we knew it Mark and I found ourselves in the car pack walking back to the car in a daze. We went home and got on with dinner, washing, nothing really, life plodded on just it was hazy. And numb, totally numb.
Mark and I were both alone and isolated ourselves in our own self-consuming worry and concern. We were only united in our grief and our fear, not with Dylan but with just being left with a label, a word. Our beloved child had been made to feel alien with this label, a disability stuck on him by a total stranger.
I’ve never felt so helpless.
Ten years ago there was no Facebook. The internet was very basic. My only known experience of autism was Rain Man with Dustin Hoffman.
I was totally, totally out of my depth and very alone.
So I began to research. It was shortly after Dylans diagnosis that I found ABA but was deterred from this by the health visitors and teachers who told me it was no good; we should follow traditional schooling pathways that have heavier research.
Since Dylan’s diagnosis we have tried homeopathy, gluten free and casin free diets, we have used PECS and Makaton to encourage speech. We have used The Listening Programme which involves listening to short piece of music through specially adapted (and bloody expensive!!) headphones for 10 minutes a day, every day for six months. We have tried various types of occupational therapy from environmentally based techniques to hands on desensitisation programmes.
Some of these have helped Dylan, others have done nothing.
For years I searched for a cure, a way to make him better. I realise now that this was wrong,
Dylan isn’t broken nor does he need fixing.
I think if this was explained at diagnosis and we were assured that things would be okay I would not have searched so desperately for answers to make things better.
Looking back it’s taken me a long time to reach where I am now.
I know now that nothing changed at 11am on 25th April 2007. Dylan’s diagnosis changed nothing. Dylan was Dylan before and he remained the same afterwards. His diagnosis is just an explanation for his behaviours, his perceived lack of interest in us.
Although there were no answers to how we could help him with his behaviours, his diagnosis provided the reason why they were there.
A diagnosis of autism does not define who a person is but can provide an explanation for some of their behaviours and identify some potential difficulties that they may have. It should provide allowances and understanding, and this starts with the parents.
If I could go back ten years and sit with myself on the evening of 25th April 2007, when the bath time was finished and the distractions of the children had all settled, I would gently place an arm around my sobbing shoulders, sit quietly and just assure myself that it will all be okay, Dylan will be okay and as a family we will be okay.
We will adjust to the added dimension to our lives that the diagnosis of autism brings with it.
We will grow together and succeed.
Mark and I will be different parents from how we had planned but parents who compliment each other with our varying coping techniques and provide a strong loving basis for all of our children to thrive.
Dylan’s diagnosis was not the end.
It was beginning.