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My son’s diagnosis journey

Category: testimonial, disability, Neurodiversity, Autism, Disability and Neurodiversity, Staff Testimonial, Autism awareness week, CityFibre, hidden disability, autism awareness day 2021

Disability

Recognising your child has a ‘difficulty’ can be incredibly difficult. As a parent you immediately think what have I done, what could I have done differently? Have I spoiled them?

Since my son was very small, I have been called to the nursery and then school regularly. I have heard various things such as ‘He has ‘only child’ syndrome’, ‘His behaviour is attention seeking because you work full time’, ‘He’s very naughty’, ‘He just doesn’t listen’, ‘He won’t sit still’. At home I knew it was hard to get him to concentrate and pay attention but, as a single parent, I didn’t always have time to sit for hours waiting for him to get dressed one item at a time or standing over him whilst he took two hours to read a page of a book . I did know that we were on a bit of a treadmill where the books he was reading at home were a lot more complex than the books the school were giving him. There were countless times I asked the school to up his reading level and the maths work as he wasn’t being challenged and he was therefore bored. Each time he moved to more challenging work there was an improvement in his behaviour, but it would never last. As an only child I didn’t have anything to compare his behaviour to, so I had no idea whether it was ‘normal’ or not.

During the first lockdown, having my child at home was ‘interesting’ (I am aware that many of you reading this can relate!) getting him to do schoolwork was almost impossible and turned in to a daily fight. He would appear to be not listening but would then do, in his own time, whatever I had asked him to do an hour before. One of the school projects was called Times Table (TT) Rockstar’s, essentially, it’s answering various multiplication and division questions on a timer. My son, who will quite happily answer any TT Rockstar’s question I throw at him verbally, would have a meltdown any time we tried to use the app. 

Having run the gauntlet of ‘is it me?’ and realising it wasn’t, I started to do a bit of research and found that he ticked every single item on the NHS ADHD page. However I also found that below the age of 10, the signs of attention deficit hyperactivity disorder (ADHD) and Autism Spectrum Disorder (ASD) were similar and easily confused.

I then discovered that getting a diagnosis opens up even more challenges……… I spoke to the school who told me to speak to the GP. The GP told me to speak to the school. I used Dr Google which left me feeling even more confused and guilty, support groups seemed to be quite competitive, ‘my child is further on the spectrum than yours’.

Finally, having traversed that particular issue, I was put through to speak with CAMHS (Child & Adolescent Mental Health Service). Following our discussion, they explained they would refer my son for ADHD testing but the waiting list is currently 15 months +.CAMHS then spoke to the school and decided that rather than testing for ADHD there was a need to be tested for ASD instead. To get this arranged I had to go back to the GP and ask for a referral to Community Paediatrics and incorporate an assessment pack from the school (FACT & FACT+). Community Paediatrics inform you that you are on the waiting list but do not even give you a timescale for when you can expect to be seen.

This led me to consider should I go private? Why do I need a diagnosis? What does it mean for my son? So far I have found the advice and support I am getting from colleagues at CityFibre have been amazing, there are too many people to shout out here but from my managers allowing me flexible working to support the school day to colleagues across the company opening up about their experiences and telling me what worked for them and their families; it’s been a real eye opener and a real education. Having people who understand the various steps has really supported me in choosing to get additional help.

So, the stage I am currently at, sit and wait for patiently for NHS paediatrics or pay privately and get my son assessed more quickly? Will the avenues of support open up once I have a diagnosis or do I need to unlock this (slowly) through the NHS?

I haven’t yet decided what I am going to do but I am so overwhelmed to know that there are colleagues across CityFibre who will support me in whichever decision I make.

 

 

 

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