My Children’s ASD Journey

I have three kids, two are awaiting ASD assessments. It’s a lot, both of them display it differently (because it is a spectrum) and I myself am awaiting an assessment as an adult. This means our household can be a lot. It can mean that someone is overstimulated at any minute, and its a place where luckily no one feels the need to mask.

I have no idea what the point of this post is. I just need to talk about the differences in my household compared to a neurotypical one. For example, while both of my children have meltdowns, both of these present so differently. One gets very emotional and requires help re-regulating. Whereas the other, their meltdowns are violent, mainly onto themselves, and they have to be left alone for the “main” part of their meltdown. Once you can see that, that part has passed then intervention will actually be successful.

One of my children masks well at school, the other doesn’t mask. One requires extra support with their understanding, one understands at a level equal to their peers. The one with an understanding delay will most likely need extra support from primary one in school. This will actually be confirmed alongside the level of support needed today. (as in the date I post this) That is the main thing I wanted to talk about today. The thought of that assessment scares me, mainly because what if they don’t get the support I know they will need. I know in my logical brain that they will easily see that this child needs the extra help. That they cannot understand things the way their peers do. That their little brain works differently to their peers. None of this is a negative on their part, but it does mean help will be needed.

I’ve spoken to other mums of neurodiverse children and one thing we all agree on, is that while our children function differently, they still are amazing tiny humans. For example, my little boy is described as the sweetest little boy you will ever meet. My eldest daughter is a firecracker and she will go far. My youngest daughter is so calm, but knows when to let her feral side show. None of these things are defined by their neurodiversity.

I also know for one of my children, due to their masking, getting a diagnosis will be very difficult, as no one else sees the behaviours I do at home. This means I need to find a way to build evidence of my child’s needs, and this isn’t easy. Luckily they have shown a small side of this within their nursery, but if they don’t continue showing some of their behaviours in primary school, I won’t have “proof” of their struggles.

We are still very much at the early stages of our ASD journey, while my children have always shown signs, in terms of getting a diagnosis and getting the extra help we need, we are in the beginnings. Luckily one of my childrens journeys will hopefully begin in September as they should be at the top of a waiting list based on the current waiting times. However the “big” appointment is years away. Any other ASD parents will know just how long the wait is for that assessment. But we will get there eventually, and by then I should have a fair bit of evidence for both children to help on that pathway.

So really all I want to say is yes the days are hard, especially with us all being on the spectrum (bar one, but that could easily change or I may begin to notice similar behaviours), but I love seeing how their little brains work, and getting to learn about how they see the world. I will continue updating you all on this journey, as I feel like having somewhere to chat about all of this will be really useful.