Thursday, 10 May 2018

We Were Lucky

So, let's get caught up. Regular readers will now know that Girl Child has had her assessment. Just over a year after the first referral was made, it has been confirmed that she is autistic.

We were lucky.

We were lucky that her reception teacher had enough knowledge to recognise that autism was a possibility, rather than deciding her problems were just behavioural.

We were lucky that school dealt with the referral, putting forward enough evidence for our referral to go straight to CAMHS rather than being passed to family services, which could have led to us having to go on a parenting course before any further progress could be made.

We were lucky that, eight months later, CAMHS decided that they had enough evidence to put her forward for an autism assessment after two sessions. We took them up on the offer of a third session to get some advice, but by then the referral was written and ready to go. It was at that point we were told it would be another year before the assessment took place.

We were lucky that by that point our local CAMHS service was so far behind it had started outsourcing the assessments, shortening our wait to four months.

We were lucky that throughout this time we had the full support of the school, who have been incredible in proactively finding ways to support Girl Child and in providing evidence for us.

We were lucky that the assessors were skilled enough to see through her sociable nature and developing masking skills, and instead see the symptoms she's trying to hide.

We were lucky - others aren't. Others don't get the right support, are not believed, or not even aware autism is a possibility until much further down the line. Others have a much longer wait for assessment, have to jump through more hoops to even get on the waiting list. Others get as far as assessment only for their child to have learnt to mask so well in that time that they go undiagnosed.

We were lucky and it still took over a year. A year of further brain development, of Girl Child finding new challenges to overcome, of us struggling to know how best to support her.

We were lucky, and we still don't really know what to do next.

I can't help but think this isn't what 'lucky' should look like. Parents should be supported and believed, schools should be equipped to support all pupils, CAMHS should be properly funded to be able to deal with referrals promptly. Our 'luck' should be the baseline.

2 comments:

  1. Ahh! We are still waiting for the report back after the home visit and the observation at school for my girl. We have been lucky that the school has been so supportive but not so lucky with the people from CYPS. Ugh! I am glad you have got a diagnosis. I hope you get all the help you need x

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    1. I hope you hear back soon, I know it's been a much more difficult process for you. Thanks, I'm sure we'll get support eventually, although again that seems to involve a lot of waiting!

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