It’s Autism Awareness Month and our editor Suzie has written a blog of her own account of the condition, that her son Laurie has…
It took years before I realised that my boy behaved a little differently from other children. Not that the signs weren’t there from day one. From just a few months old Laurie would stim in his cot.
(I now know that the term ‘stimming’ is an American term, used to describe self-stimulatory behaviour – be that rocking, spinning, repeating words etc.)
I took him to the doctor with videos I’d made of the stimming, but it was absently dismissed and I was sent away – confused.
Then of course Laurie didn’t start to talk when other children did. It became a real issue at nursery because he’d become aggressive trying to get his point across or shouting at other children.
Laurie is a big boy – tall and strong and heavy set. So, when he didn’t start to walk and spent an extraordinary amount of time shuffling on his knees, well, my poor back had something to say about that!!
But did I think Laurie was autistic? Not for a minute.
My boy attended the most amazing nursery setting and the staff there intervened to get me help with Laurie. His key worker arranged for a speech and language therapist (SALT – you learn lots of acronyms) to help his with his language. With this little extra support Laurie began chatting away, he never stops talking now.
I also pushed for help from a physiotherapist, but just as my appointment was due to come through and a little before his third birthday, my boy decided to walk. Hurrah.
Did I think Laurie was autistic? No, he’s just a boy that takes his time doing things at his own pace.
I visited the doctor again to ask for help when the night terrors started. Laurie would scream for hours during the middle of the night, it was an horrendous time. I even had a neighbour say she would report me and that I needed parenting classes (thankfully she later apologised for her hugely insensitive and hurtful assumptions).
I researched ways to help his bedtime routine – and then, just as I was about to get specialist help, my own techniques worked.
So, did I think Laurie was autistic? No, he’s just a little boy who could be challenging at times.
Getting Laurie to learn new tasks was difficult. I wanted him to learn to swim, but his teacher would lose patience with Laurie for not listening. Laurie wears glasses so for a start he could hardly see in the pool. And swimming pools are noisy so he’d get easily distracted.
I took the manager aside and described Laurie’s issues. I bought him some prescription goggles and the he was given a teaching aide in his lessons – my boy’s swimming took off. He just needed a little one to one support.
Did I think Laurie was autistic? No, he just needs a little extra help with tasks.
I was majorly panicky about Laurie starting school. He’s an August baby and he was developmentally behind anyway. My heart ached at the thought of sending him to school before he was ready. I could’ve delayed his start, kept him at his wonderful nursery for another year – but then he’d be made to skip reception and start year one. I felt I didn’t have a choice.
Laurie struggle enormously with school. He couldn’t interact with other children properly, or following simple instructions from teachers. He couldn’t read or write – or even hold a pencil. He came home several times with dirty pants, and one time asked if he could ride in the car standing up; later admitting his pants were full of poop and it was uncomfortable. Just writing these things makes me well up again at the thought of it.
Did I think Laurie was autistic? Not necessarily, but now I knew – something wasn’t right. My boy was different.
I started to make a list I called ‘Life with Laurie’
I realised he did the following:
- Rocked side to side to ‘pleasure’ himself
- Became fixated with certain shows or toys and wouldn’t watch or play with anything else
- Repeated sentences or words over and over – known as echolalia
- Had night terrors and trouble sleeping
- Couldn’t follow instruction without visual clues
- Was a messy eater
- Had sensory issues – such as aversion to certain sounds and dependence on other senses (he LOVES water)
- Had a speech delay
- Delayed walking
- Developmentally behind other children at school
- Lack of understanding of personal space – Laurie will grab your face if he wants your attention
To be honest the list went on and on and on. And the list was very similar to the symptoms of – autism.
Did I think my son was autistic? Actually, yes, I thought there was a very strong likelihood he was.
I went to the doctor, to the school, to the nursery, I went online. Someone needed to help my boy I NEEDED to help my boy. At first I was brushed off a little, but I stood strong. “My boy needs help. And I WILL get him the help he needs and I ask you to help me and not stand in my way because of funding issues, staff issues or any other issues you can think of.”
The ball rolling
With a bang the ball started rolling. Appointments, meetings, clinicians, doctors, consultants. I was warned it would be a long process – a couple of years – before diagnosis could be made. We’re still on that road.
Laurie now sees/has had
- A paediatrician
- A physiotherapist
- A geneticist
- Speech and language therapy
- An occupational therapist
He already hates the hospital and his school attendance suffers, my work has taken a back seat at times to make alllll of the appointments.
His school has been amazing. At the end of the reception year during the fun day, the deputy head and Special Educational Needs teacher told me Laurie would get a 1-2-1 teaching assistant in year one. I cried in the middle of the school field.
Laurie’s been diagnosed as having global developmental delay, which means he’s behind other children in all aspects of his development.
He hugely struggles with change of routine, and he’s finding some changes at home difficult right now, which is being expressed at rudeness. I’m working on that with him.
Sometimes I feel like I’m the only person who truly sees Laurie’s autism and understands it. It can feel like others think he’s just naughty or rude or difficult. But my son is wired differently. Uniquely, wonderfully different.
We have a long journey ahead of us. But one I will never stop fighting with him and for him.
My advice to anyone asking themselves – is my child different? Quite possibly yes. Search for answers, get help, don’t accept ‘he’s just naughty/rude’. Love them, fight for them, cry when they’re not looking.
I’m terrible at asking for help – but I will knock down a thousand doors to get the help my son needs. He’s hard work at times and sometimes I have to remind myself and those close to us, he’s autistic.
Above all – talk about it, tell people. It helps people understand. Don’t be afraid of labels – labels = help. Good luck.