'I should have trusted my instincts': one mum shares the early signs of autism she missed
Georgina Fuller knew her baby was different from day one, but didn't trust her gut. Here are the early signs she spotted and how getting a diagnosis changed her son's life.
Words: Georgina Fuller
On our first night in hospital, I remember the midwife coming in to find tears streaming down my face and my newborn son, Eddie, howling next to me in his Perspex cot.
I'd spent that whole night trying to get him to feed properly but he wouldn't latch on and kept pulling his little legs up and screaming in outrage.
Every time I bent over to pick him up and comfort him, I was worried the stitches from my C-section would rip open.
He was born the day before the anniversary of my mum's death, and I was feeling very emotional about the whole thing – the juxtaposition of his birth and the date she left the world.
My hormones were all over the place and all I wanted was my mum to come and give me a cuddle. But she had died of heart failure at the age of just 57. That was in 2005, and Eddie was born in 2012.
He looked exactly like his brother, but I could tell that he was going to be quite different.
I kept wondering why he wouldn't feed in the same way his big brother, Charlie, had. I also knew that newborn babies were born without the ability to focus clearly on someone's face and that sometimes they might appear to have crossed eyes.
I kept waiting for him to focus and when he finally did, it was wonderful.
Then, at Eddie's six-week check, the doctor said we needed to refer him to the paediatric ophthalmologist as he thought he had a squint and might need an operation to correct his eyes. His left eye looked inwards, which meant he couldn't look directly at anything.
The feeding issues continued and Eddie would cry and scream every time, and then take hours to settle afterwards.
The health visitor thought he might have colic, and we tried Gaviscon sachets and various other treatments, but nothing seemed to work. She also suggested it might be related to lactose so I gave up all dairy products, but, again, it didn't make much difference.
The midwife called in one last time before she signed me off and I showed her my bleeding nipples. "At least it's not coming from the baby's mouth," she said.
She recommended expressing then combining the breast milk with formula. That worked well for a few weeks, but I missed bonding with him in the way I had with my first son.
I felt like a bit of a failure not being able to feed him myself, although looking back now, I appreciate how difficult it all was.
As the weeks went by, I realised Eddie probably wasn't going to engage with other people in the same way other babies did.
I told myself that each baby was different. 'Maybe he's just a bit more reserved,' I thought.
The main thing was that he was securely attached to me and his eyes would light up when I came into the room. I remember a friend saying he was like an earnest old man, and he really was. He didn't smile or laugh that much but that made it all the more special when he did.
When he started nursery for three days a week at about 9 months, he seemed to settle in fine and didn't cry at drop-off like his brother had.
Initially the nursery staff told me he was quite quiet, and it wasn't until he was about 18 months old that the 'A' word was first mentioned. By this point he was delayed with his speech and language development, and had only just started walking.
I knew so little about autism and, having grown up in the ‘80s and ‘90s when it wasn't really a 'thing', I felt upset and anxious at the thought of my son being labelled.
Before we had Eddie, my only experience of autism was watching the 1988 Hollywood hit film Rain Man, starring Dustin Hoffman as a man living with severe autism. I was pretty ignorant and believed that autistic people were mainly non-verbal or had some sort of innate mental superpower.
When Eddie became a toddler, his fine motor skills also appeared to be somewhat delayed. He wasn't able to hold a pencil or a knife and fork properly, and I couldn't get him to go on the balance bike without falling off.
I told the nursery staff that I wanted to wait and see how he developed before rushing to get a referral. I had no idea how long the wait might be or how overstretched the NHS was when it came to dealing with children with additional needs.
Having a child with special needs is like learning a whole new language and entering another world. At first, we were very resistant to referring Eddie to child and adolescent mental health services (CAMHS).
However, things got even more difficult when Eddie started school. His behaviour deteriorated. He became agitated and would sometimes lash out at other children. He wore an eye patch, which made concentrating even harder for him. He would have major meltdowns when he got home and became inconsolable at times.
He couldn't cope with all the noise and commotion of the playground, and I often had to cancel work arrangements at very short notice to pick him up. After a year, we moved schools. Thankfully, the next school was a bit better equipped to meet his needs.
We eventually got a private diagnosis in 2019 when Eddie was 7, and I remember thinking I wish we'd done it sooner. Eddie was diagnosed with autism, sensory processing disorder (SPD) and pathological demand avoidance (PDA).
In 2022, after a long battle, we managed to get him an education health care plan (EHCP), which is a legal document that outlines his needs and what the school needs to put in place to meet them.
Then, in 2023, after he was put on half days at his mainstream primary school, we faced another battle with the local authority and managed to get him transferred to a specialist school.
Eddie is now thriving at a school where he feels supported and understood. It has done wonders for his social skills.
He is funny and engaging, and although he still says exactly what he thinks, he does now realise that there are certain things he can't say (like asking my friend if she is pregnant or ate too many doughnuts)!
He adores our two dogs, makes incredible LEGO models and has made a couple of great friends. I am hugely proud of him for how far he has come.
Looking back, I know I should have trusted my instincts and sought support earlier on. I was too worried people would think I was a bad mum or that there was something wrong with my beautiful boy.
I thought getting a diagnosis would feel like the end but actually it was just the start, and the best thing we could have done. I've grown to love and celebrate his differences and the unique person he is.
Think your child might be autistic? Here are some common early signs to look out for
"Symptoms of autism in children can include difficulties with speech, perhaps speech delay or not talking as much as other children, or repeating the same phrases or noises," says Dr Philippa Kaye.
"There may be other social signs such as avoiding eye contact, and if you smile at them they may not necessarily smile back or may not respond to their name.
"An autistic child may have difficulties understanding social cues and what others are thinking. In young children this may be seen, for example, in not being involved in pretend play.
"They may have repetitive behaviours such as hand flapping, or other repetitive movements. There can also be emotional dysregulation, meaning that they get extremely upset in certain situations, for example if they don't like a noise or a smell."
Developmental delays aren't always a sign of autism. However, if you are concerned about your child's development or behaviour, please seek help from your GP, health visitor or special educational needs co-ordinator at school.
Images: Georgina Fuller