4 Years On The ASD Waitlist!!

Sixteen years have been consolidated onto a 28-page form a few months ago, a young life story captured in a series of questions about 'moments' in our daughter's life. I've been feeling a bit strange ever since completing it and I've been trying to understand why this strange feeling is tinged with fear, worry, and in some respects a numbness. Over the four years we've been on this particular list I'd periodically ask 'where are we on the list' and a few weeks ago I was told 'well it's a very long list, it's going to take time'. I had to gulp back a few choice words to calmly say "I know we've been on it for four years'. A couple of weeks later we received an appointment date so I'm glad to of made the periodic prompts as it keeps us a little more likely to be closer to the top of mind. As you can imagine with four years under our belt we felt very forgotten!

I'm going to expand upon the fear, worry, and numbness I feel below.

Numbness

I'm not sure how to feel and as a result have felt numb, in part because in our daughters younger years I did not pick up on her neurodiverse traits of playing back to back with friends, reduced eye contact, copying others responses in social situations, attachment to parents, deep thinking and an imagination that would see her remove herself from the world we know and transport herself to a place filled with animals to distract her from the intense anxiety she experienced. I feel guilt for not noticing but also reassured that I showed her only love and acceptance during these times, with no judgement.

Worry

The not knowing what the appointment experience will bring to our daughter, her parents at the appointment by her side, her wider family, and ultimately her own feeling of belonging. She was not keen to be diagnosed, carrying a label, and her worry of being 'over' supported when she wants to be so independent. When the appointment came I have to admit I waited 24 hours before telling her as I couldn't face the potential lack of enthusiasm for what had been such a long wait. When I did tell her I said 'you know you said that you wanted to know what happened to you? One minute you said you were fine, the next you weren't well, an appointment has come forward that might just shine a light on it for you.' She seemed at ease with the prospect of it, but perhaps a little indifferent too which is completely understandable.

Fear

With such a long amount of waiting I have studied, read, observed, and journaled around the topic and at times felt very clear on what diagnosis it was likely to be. Seeing our daughter described to a tee in so many areas was in someway reassuring but now I almost know a little too much to the point where I don't know what the outcome of the assessment will be. I'm doubting my own judgements, I'm hesitant, and may go as far as to say a little lost. I don't know what to expect, I've naturally got high expectations of getting some answers and a deeper understanding so that I can be the best support to her that I can be.

The realms of being in the world with a neurodiversity are certainly more widely accepted these days but I also feel there are so many people that just don't understand it and as such misinterpret traits. We can all learn more to be able to more deeply understand.

I wrote this blog a few months ago and now we are on the other side of that diagnosis. We received a respectful diagnosis straight away and are now awaiting the full report. Our daughter is Autistic - the best bit for me was the way in which it was imparted to her with a deep empathy for the life she has travelled, for how hard it has been. She announced it herself too, trying it on for size, and like many things once your awareness is heightened suddenly you're not alone, it feels to her like everyone is Autistic - the truth is I think it's more likely that more of us are neurodiverse than neurotypical!