I was an intuitive co-sleeping, breastfeeding, gentle parent and I continually ignored my gut on the persistent nagging question ‘is there something wrong with my child?’ Autism wasn't on my radar and I didn't want it to be.
The early months and autistic signs
Alex’s birth was traumatic but after the first two weeks of establishing breastfeeding things were great. He wouldn’t look at me whilst feeding though. Somewhere my thinking reminded me that poor eye contact went hand in hand with autism and yet I chastised myself for being a panicky first-time mum. Because of my own uncertainty I even dismissed his uniquely particular food relationship and am writing this coming up to the three year mark of this ‘fussy eating stage’ where he is finally trying foods outside his comfort zone.
Alex didn’t really talk until he was 3.5yrs and didn’t really want to play with other children, happily running around in his own world oblivious to the potential playmates. Around this time I noticed a few more autistic traits. He was neatly lining up his toys, became obsessed with fire engines, had to do tasks in certain orders and only wore certain clothes no matter the weather.
He was coming home from preschool and spent a lot of time spinning and his speech started to disappear. He started to communicate in grunts and quacks (he is a fan of Sarah and Duck).
The penny drops and special support
I took him along to an adult support group I wanted to try for myself. After a few weeks one of the women attending the group came over to me and asked if Alex was autistic. The penny dropped. I became angry at myself for not trusting my gut especially as this lady could suspect it so readily.
Alex’s behaviours outside of preschool became worse. He was trying to hurt himself and I could feel the anguish radiating off him. I decided to take him out of preschool, unsure whether it would be temporary or as a move towards home educating. We then came across a group called Bubbles, based at a local family centre and aimed at families with children who have additional needs. I nearly didn’t go, I felt like a fraud and that I was just going a bit loopy rather than my child having an issue. I only went as I was meeting a friend there.
As a result of the expert family support we received I decided to go ahead with a diagnosis to help Alex understand who he is when he’s a bit older. We were then referred to a specialised Health Visitor who did two home visits to assess whether Alex needed an appointment with the Child Development Centre. This is where children under the age of eleven are referred with suspected autism, ADHD and other behavioural issues.
Gaining understanding and support
The Health Visitor understood and supported my choice to practise attachment parenting. Each child's expression of autism is unique but with her help we discovered these practical steps to be supportive:
- To aid everyone in sleeping through buy a radio alarm clock. Your child can learn not to wake everyone before the music plays while still being able to get to you in the night if they need to.
- To increase the range of food try foods with different textures as well as tastes. Preferences are often based on crunchiness or softness rather than flavour.
- A daily schedule made of pictures can help a child prepare for upcoming changes.
- Pack a bag of sensory/meltdown aids. This can include ear defenders, chewlery (chewigem or jellystone) a soft piece of fabric, fiddle toys and a snack. Some kids like to block outside noise with other noise too so an MP3 player/iPod could be useful.
Waiting for diagnosis
While we live with what looks like a 9-12 month wait (we are 5 months in) for the assessment Alex has asked to return to preschool and I’m endeavouring to organise SENCO (Special Educational Needs Co-ordinator) support for when he starts primary school in September. I’m fortunate to have a wonderful tribe of women (and one man) to guide me and be there for us through the sanity-challenging times. I would also suggest these key points which have helped me through our autism journey;
- Document everything, no matter how sad it makes you to see it all written down, as that will help you remember things in appointments.
- Take time for yourself. The coping and waiting can wear you down and if you’re not careful you will burn out. Make sure you do something every day for yourself, even if it’s a tiny thing, to help hold onto your sanity!
- Do not attempt this on your own. Seek the support of specialised Health Visitors, your GP, SENCO, occupational therapists, early years support workers and the varied Facebook groups where you will connect with other families going through what you are.
Good luck on your journey - you are not alone.
