Suspected ASD – Our Journey So Far!

This is not a blog post I would ever thought I would write but here we are! Over the last year or so, we have been noticing that Cleo has been showing signs that could point to ASD. I wanted to write a blog post about this, just so I can get things off my chest and in case this helps other families. I am hoping to do this a blog series and in parts so this is our journey so far.

If you are new to my blog then here’s a bit of a back story. Cleo was born in July 2017 and she was born via crash emergency C-section and it was very traumatic. Normally, you would have a 1 and 2 year check but unfortunately we missed these. We didn’t have the best experience with health visitors for a long time but thankfully that has now changed. I will get in to that soon though.

I managed to get a really good health visitor for Brody and she actually did Cleo’s checks that were previously missed. During this time, Cleo was also diagnosed with glue ear and hearing lose in her right ear which we suspect set her back too as she has had this for quite some time. Cleo’s checks came back that she was considerably behind. We were already aware of this though and we had noticed that she doesn’t really say much. She can probably say 20-30 words and she is almost 3 years old.

After a while, we became worried and my health visitor was amazing. She did some more checks and referred us to see other people about Cleo. The biggest worries for us are that she doesn’t speak, she is funny with eating, she walks with her feet turned in and on tip toes, she flaps her arms all the time and the worst thing is her sleep.

I don’t even know where to begin to talk about this to be honest. Cleo doesn’t sleep. She doesn’t nap in the day and can survive on 3-6 hours of sleep at night. Most nights she will get only a few hours. She sits up all night in the dark and will talk to herself and even sing. Sounds creepy I know but it has meant that both Jonny and I are surviving on little to no sleep and that is without taking Elsa or Brody in to consideration too. She can seem to sleep for a few hours and go all day without needing a nap and when I say go, I mean she runs. Everywhere and all the time.

Cleo is on 100% all the time and there doesn’t seem to be down time for her. This can be really tough for us and some days I don’t even know how we do it but we seem to get through.

Thankfully due to our amazing health visitor, we have been speaking to an incredible sleep specialist and recently have started to have sleep counselling with Sleep East. I have heard amazing things about them and I am praying that they are able to help us. We are currently waiting on another hearing appointment and a paediatrician appointment at the hospital which will hopefully start our journey with finding out if Cleo has ASD or something similar.

I don’t want to sound negative at all and to be honest, I am completely fine with the fact that Cleo may be have ASD. It is a little daunting and I have done my own research and I think as a parent you just know when there is something with your child. We are prepared for anything that we may have to do to help Cleo and we are ok with going through this journey.



2 thoughts on “Suspected ASD – Our Journey So Far!

  1. Oh, it is a journey. ASC can be daunting and exhausting but incredible too. My son was diagnosed two years ago (aged 4) but I had suspected he was since birth and “knew” when he was two. But, we were living in Japan and accessing support and a diagnosis there was… um… not ideal. So, we packed up our home and business and relocated to the UK. The diagnosis didn’t lead to any “support” but it has meant we have been able to advocate for him more easily and people are far more accommodating.

    I wish you so much luck on your journey and hope you get some sleep soon.


  2. Hope you get the diagnosis soon so you can access support. We struggled getting one at first but having read up about autism, we changed the way we approached things anyway and it really helped. It sounds like we never had the sleep issues you’re having. Wish I could offer more than sympathy there. Our boy’s now 11 and just wonderful. Being autistic gives him challenges, but he rises to them. Wishing you and Cleo all the best xx


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