Like many parents whose child is diagnosed with autism, the words didn’t come as an absolute shock. It’s something we had been expecting for some time due to the involvement of a variety of Health Care Professionals. Despite knowing it was coming, as soon as the words were spoken by the Consultant Paediatrician, I was floored.
It’s mentioned so many times about going through a grieving process but the only way I can describe how I felt at that moment in time is that someone had told me that my child had died. I can understand how some may think that is melodramatic but it’s exactly how I felt. I had a heavy feeling in my heart and a sick feeling at the pit of my stomach. I looked at my beautiful boy and wondered how it was at all possible.
I left that room unable to stop the floods of tears and didn’t want to discuss it with anyone at all. When I did, it felt like I was passing on more news similar to a death in the family. Everything I thought I had and was going to have, had been taken away from me with those words.
Autistic Spectrum Disorder.
I had a combination of emotions that switched from me wanting to wrap my 3 year old up in cotton wool to not actually being able to look at him because he was now different. I clung on to to those very words, Autism Spectrum Disorder as I believed that ASD was a slightly different diagnosis to autism. Autism was more severe and there was no way that Joseph could have autism.
I was offered a mountain of support in terms of workshops, literature and support groups but I didn’t want any of it; I would digest the information in my own time, but at that point it was too soon.
I’m more than aware that some people fight for a diagnosis for years and that my comments may draw a deep intake of breath and yes, had Joseph had to wait until aged 9 without any diagnosis and support, I would be the one sucking the air in as I no doubt would have been fighting by now.
One of the main reasons people fight for a diagnosis is so they get the help and support they justly deserve, Without a diagnosis it makes it incredibly difficult to access practical, financial and emotional support as well as a Statement of Special Educational Needs or an Educational Health Care Plan as they are now being converted to. That’s why it’s disturbing to hear now that there are certain Clinical Commissioning Groups who are considering making less autism diagnoses and reserving them for those who have severe difficulties. It is unclear as to what they are classing as severe but it’s stated that they will focus on children who have another illness such as depression. Under this guidance, there will be so many children left without support. I would have been that parent fighting for a diagnosis under such guidance.
But for us, we’d had one thing after another since Joseph decided to throw in an early appearance into this world and once the referrals started being made, I simply wanted to be cut some slack. I wanted the same type of toddler as my Mummy friends had. I wanted to just get on and enjoy normality not different. Joseph’s an only child and I felt cheated out of motherhood. I looked upon those who had one child with autism and another child without a disability, and saw that they still got to enjoy the normal whilst embracing the different.
And for everything I have said about how I felt in those days of his diagnosis, my feelings are very different to what they were then. I look at my son with pride and happy to raise my hand and shout “He’s mine!” I am accepting of his diagnosis and have never loved him any less because of it, if anything I have loved him more as I know he needs it. There is an overwhelming sense of pride of every little achievement he makes and milestone he hits. They say time is a great healer and indeed it is.
I am not going to apologise for the way I felt as it’s personal to me. I’ve spoken to so many people since opening up about my true emotions at that time, who have thanked me. Thanked me being honest enough to hold my hand up and talk about those thoughts that are difficult to say out loud. Thanked me for admitting I was not embracing different. And thanked me for letting them know they are not alone.
It’s not just our children who have very different journeys, it’s us as parents too and there is no wrong and right way to feel and parent, yet so many of us feel it acceptable to berate others for having the honesty to speak up.
I hear parents say that they wouldn’t have it any other way and when I disagreed, it caused more debate than my use of the F word.
There are days that I want to kick the fuck out of autism for the challenges Joseph faces because of it. There are days that he has found more difficult, yet still managed to overcome a hurdle and I want to shove two fingers up and say, “Screw you autism, we’ve got this”
Why wouldn’t I want my son not to have to face daily struggles? Why wouldn’t I want to remove the uncertainty of whether he can be independent or remove my constant worry of what will happen when I’m no longer here?
Life isn’t always a straight path and we embrace the rollercoaster that it inevitably is, but no parent should ever be criticised for taking a different route.
We’re all seeking the same destination.