Private ASD Assessment

[Laurrog11]

Hi all, I’m looking for some advice please. My son is eight years old and I have suspected he has autism since he was two. I actually (regrettably) refused a community paediatric assessment back then because I was scared of labelling him and it has simply been an uphill struggle since then. I took him to the GP to request a referral to CAMHS aged four, GP advised to let him start school and find his feet. Took him back to GP aged five, GP asked for referral from school. Spent next two years trying to get in front of school SENCO or anyone who would listen. Teachers could see the issues and agreed he was likely on the spectrum but it was a big school in a deprived area and he is a clever, not hugely difficult child who faded into the background. I eventually moved schools, within a week of being there, teacher approached me re his “complexity” and asked if she could involve SENCO - music to my ears. SENCO went off sick for a whole year. He was finally assessed by an education psychologist last September who agreed ASD likely. Report received in December four months later, report still sat with GP who is yet to read and refer to CAMHS. SENCO has put limited (LIMITED!) but thoughtful stuff in place at school to support social stuff however school work is massively suffering and class teacher has approached me for ideas (yesterday). He is sad, tearful, won’t speak on how he is feeling and is rocking a lot which has lead to him being moved to a table on his own. This is a quick matter of fact post but to say my heart is breaking is a bloody understatement.

So the part where I need advice is - I’m ready and able to go private to at least formalise a diagnosis and allow us to access some support. I know we must still progress with CAMHS and I will ensure that happens.

I’d like to know whether there is any glaring reason NOT to go private and really would love to hear some good news stories from anyone who has.

I’ve had enough of a people relying on the fact that my son is mostly “ok” as a decision making tool around the urgency of his need. Right now he is really not ok and our local CAMHS waiting lists mean a diagnosis close to ten years old.

Any advice is hugely appreciated x

Sorry to say I have no idea about private assessment you are asking about. May I ask you what symptoms you noticed when he was younger and now, when many didn't agree with you.

I am just trying to unravel where you are at. Have you had OT and SaLT input yet? And do you have an ehcp. You can pursue all these without a diagnosis.
I am very pro pursuing a diagnosis for a medical condition but its not a one that brings much support. The thing it did for us was change attitudes from staff which was a huge benefit. It gave us peace of mind that we werent imagining things. And he now goes to a special school where you need a diagnosis to attend so if you think thats needed its a good idea.
I have heard of places not accepting private diagnosis but other local authorities do. In terms of things that actually helped it was the OT snd SaLT that had the best strategies. The school should also be able to access an autism outreach even without a diagnosis.
I suppose what i am saying is it is a huge struggle to afford a private diagnosis you could wait and push for all the other support.

@Ggift it isn’t that the professionals we saw disagreed, they have just dragged their feet. GP is the only one who didn’t have an opinion either way and wanted evidence from the school. Both schools have agreed he is likely on the spectrum but he gets on with his work (or used to any way) and is a child of greater depth (as they call it) so he has never been problematic enough for them to invest the time in, in my opinion. He has social and communication difficulties, strict routines, extreme control issues, lots of self stimulation. His younger years were much more difficult he is a quiet boy now who keeps himself to himself but he didn’t sleep until he was four and suffered with wild tantrums until five. I have no doubt that he has autism and haven’t met anyone who knows him professionally who disagrees but whilst he appears to be regressing, everything is taking much too long.

@Grasspigeons thank you for this, I actually had no idea we could have accessed all of this support without the diagnosis. I have spoken to the outreach service for general support over the years but never actually worked with them. In four years we have literally achieved one meeting at school one with a SENCO support (not SENCO) and in the past four months two meetings at school two with SENCO and Education Psychologist. Support in place at the moment is the SENCO trying to arrange a lunch time club for him to explore building friendships and dealing with his dominance over play. Class teachers tells me she needs support to support him as he needs constant bringing “back into the room”. I’m at a loss.

It wont be easy. You need to push and push. Still pursue a diagnosis but dont wait to get everything else going.

Yes agree, still push for a diagnosis, but apply for an EHC Needs assessment yourself, requesting assessment from OT, SLT and anyone else you think could help. It is likely to be a long process, and many LAs turn down requests initially , only to back down when parents appeal.

Info here:
www.ipsea.org.uk/ehc-needs-assessments

IPSEA also have an advice line and tribunal helpline.

These are also good.

www.sunshine-support.org/

So has the ed psy not done a report about what should be done?

Also, might not be anything you haven't already found yourself, but sometimes there are useful local services listed in the 'local offer' section of your LA's website. Might help with EHCP application.