This week has been World Autism Awareness Week, culminating in World Autism Awareness Day tomorrow (Sunday April 2nd).
About 700,000 in the UK alone are on the autism spectrum (including Asperger’s Syndrome). It affects how a person communicates with and relates to others and how they experience the world around them. It is a spectrum condition – that means all autistic people will share certain difficulties but it will affect them in different ways and in severity (www.autism.org.uk).
I don’t talk about it too much as we still don’t have an official diagnosis yet but my youngest, Riley, who is 5 is currently being assessed as he appears to be on the spectrum.
I noticed that.Riley was developing as I would have expected when he was 2 years old. As a qualified nursery nurse who had worked with children for the previous 8 years, I had plenty of experience to rely on. Adding to that was my mother’s instinct telling me something wasn’t quite right.
One of the issues was his speech, which was delayed. The health visitors referred Riley to get his hearing tested. This indicated a slight case of glue ear and very minor hearing loss. After this result the health visitors unfortunately we’re not very helpful and wanted to put everything down to this result but I still believed there was something more going on.
We muddled on and Riley attended a playgroup for a year before starting school nursery in September 2015, just before he turned 4. It was during his first parents evening, a couple of months after he started, that things started falling into place. His teacher asked how I thought things were going and I reeled off everything that had been happening.
By then his glue ear had cleared up and since starting nursery his speech appeared to be coming on but his understanding was still severely compromised. He had issues with routine, obsessions and repetitive behaviour. Although loud himself, he doesn’t cope well with loud noises around him. There were other sensory issues too including issues with touch and a heightened sense of smell. He would flap his hands, especially when excited or waiting for something. He has very little awareness of danger. He was happy to play alone and whereas Leo would often ask me to play with him, Riley never did and when I tried he didn’t welcome my input.
Luckily she had noticed alot of this too and I finally felt like I wasn’t going mad and that we might get some answers and the help we needed. His teacher was fantastic. We implemented things at home and nursery to try and help Riley. He was referred to a pediatrician and a speech and language therapist.
After moving to Derby from Essex in November last year, Riley started a new reception class in January. His teacher and the staff here have also been brilliant. They have picked up on similar issues aswell so we are now in the process of being referred to a pediatrician here. The school have their own speech and language therapist who will be working with Riley as needed.
Riley is a happy, very bright, loving little boy. He likes playing in the garden, Paw Patrol, Batman and school work (reading, writing and maths). His current obsession is the calender and he has already told me off this morning for still having March up when it’s April now! One of his ‘jobs’ at school is to write the date on the board for his teacher every morning. He sometimes appears to live in his own world – free from worrying about what other people think he will sometimes say things that are inappropriate. These aren’t meant to be hurtful or rude – he will just say things very honestly and how he sees them.
Having a child who is on the spectrum can be difficult. Between people not understanding, having to fight for an official diagnosis and just the day to day issues that arise from his difficulties, it requires a great deal of patience. This can be especially hard if I am flaring or in pain as patience can be hard to muster! But Riley is a wonderful little boy, ‘just Riley’ and I love him to bits and wouldn’t change him for the world.
Autism is an example of another ‘invisible illness’. To see Riley in the street you would think he looked like any other child. Then he may have a meltdown (not quite as severe or common now as we learn his triggers) or say something inappropriate. People don’t realise this is part of his condition as they can’t see it. Awareness again is key, so people don’t think you are a terrible parent raising a spoilt brat. They understand the possibility of an underlying issue and can think before shooting a judgemental look or muttering under their breath.
Tomorrow for National Autism Awareness Day we all plan to wear blue. Please join us and post your photos to show your support and let’s get people talking about and understanding this condition more!