Does an official Autism diagnosis make a difference? Our story…
Since launching That Beautiful Mind, I have had the privilege of meeting many parents of children with additional needs and on the ASD spectrum, across all stages of diagnosis.
I am often asked by other parents if an official Autism diagnosis is worth pursuing and does it actually makes a difference? So, I am here to give you my thoughts and perspective as a mum: from our own journey through our sons diagnosis, and the difference I feel it made to Alfie’s immediate needs (and ongoing development) as well as my mental well-being.
Firstly let me say, that you do not need an official diagnosis of autism or other additional needs for your child in order to be able to access therapy, support and educational health care plans in the UK. But in my experience, it definitely helped us to secure these things quickly and with less struggle for Alfie.
My son Alfie (now 8) is my 4th child, so when he was a baby, I instinctively knew that something was different in his behaviour and development. He was struggling in a lot of areas and getting so frustrated and upset.
I felt that I was failing him miserably… and I was. A mum is supposed to understand her child’s needs and know how her child communicates, but I missed the mark time and time again.
Luckily we had a fantastic health visitor who listened to my concerns and closely monitored my son from the age of 10 months. This meant we could start the ball rolling to refer him to a paediatrician the minute that she had completed his 2 year development check (if it confirmed that he wasn’t hitting his milestones).
Alfie was referred the day after his 2nd birthday.
At our first hour long meeting with his paediatrician, Alfie (then 2.5) was observed closely as I answered a million questions covering every aspect of his life, and ours.
It went as well as it could with little boy that didn’t like strangers, change, bright lights or loud noises. At the end of the appointment I asked the Dr (off the record) for their honest opinion, and I was told that she suspected he was severely autistic.
I went home in a bit of a daze but made it my mission to read up on everything I could about Autism.
He then went on to have his MDA (Multi Disciplinary Assessment) a few months later and was officially diagnosed with Autism and Global Development Delay at the age of 3.
By this point, I had researched Autism so it wasn’t a huge shock to me that my little boy was autistic, but the Global Development Delay (GDD) diagnosis was unexpected.
I walked out feeling a mix of emotions. A fear of the unknown, but also overwhelming relief.
Up to that point I had felt I was failing him as a mum as no one would listen to my concerns. Deep down I knew I wasn’t crazy, but I had started to question if I was paranoid.
I felt in my core being that there was a reason behind Alfie’s behaviour and development issues, and at the moment it was confirmed by a paediatrician, I breathed out for the first time in months.
Our son’s future became less scary to me at that moment.
We had a diagnosis which meant that nobody else could deny Alfie’s entitlement to therapy, appropriate educational provisions and additional help. No one would now keep telling me he’d ‘grow out of it’, or ‘all he needs is some ‘discipline and boundaries’ or a ‘decent bedtime routine’.
I knew from that moment he would receive the support he so desperately needed, and I could fight harder off the back of it.
The relief was huge.
We no longer felt alone adrift a sea of desperation.
Suddenly there was a name — a tangible reason behind why my son was non verbal, flapping, having meltdowns, would only eat 3 things and never slept.
This meant I could regain some control as a mum and could research Autism and GDD, try to learn about them and find ways to help my amazing little boy and support his ongoing needs. It also encouraged me to connect with others that could offer advice and explain the journey we were all now unwittingly on together.
For me a diagnosis was a powerful tool in ensuring Alfie got what he was entitled to without a constant battle against the system; ongoing speech & play therapy, medication to help get him to sleep, a full Educational Health Care Plan for school etc.
Don’t get me wrong, an official diagnosis didn’t mean that everything suddenly became easier.
It just gave something solid to refer to and leverage in our daily fight for his rights and also, importantly, it enabled friends and family to give us the space, patience and support we had needed for so long.
So, for us, diagnosis was definitely not doom and gloom.
It was the key to gaining immediate help for my son and accessing the support he needed then and in the future. For us, it gave us reassurance and hope after a period of complete stress and turmoil.
It opened up many doors for Alfie and our family that had been locked shut previously and offered us hope, knowledge and answers in place of fear.
If your child is going through the process of getting an autism / GDD diagnosis, or you are navigating the wild waters of parenting a child with additional needs and just need to talk to someone that ‘gets it’, my inbox is always open…
Donna x
Donna is a mum of 5, Autism Advocate, Writer and Founder of That Beautiful Mind
Mum to a little boy with Autism, Global Development Delay, and Sensory Processing Disorder, Donna created That Beautiful Mind to offer unique SEND products to help parents support their child's development, communication, and education.
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