Private ASD referral

[BuffytheDamnLyrePlayer]

Hi,
I am hoping someone might be able to offer some advice. My 8 year old has been referred for an ASD assessment; where we are the wait is 2.5 years. We are considering a private assessment, but I am finding it very difficult to get clear answers as to what would happen next. If they were diagnosed by the private consultant, would all subsequent medical/therapeutic care have to be done privately? Or would they stay under CAMHS care?

If it is of any relevance, the SENCO has told me that in her view, it is unlikely they would require an EHCP, and if that isn't required, I'm wondering what actually happens after a diagnosis?
I would really really appreciate any suggestions or feedback. I feel like I am going round in circles and all the time doing nothing productive to help my child..
Thank you.

If your child is diagnosed privately you can then pass the report on to their school and to the NHS; you don’t need to continue privately. If the report identifies some unmet needs they have at school or whatever, the school should try and meet those needs whether or not an EHCP is in place. But I think the levels of support vary a lot and it’s all a bit underfunded. My dd has just been diagnosed privately, I think the only change at school will be that she can take an extra break in the day. But it’s still early days for us so I don’t know for sure. One of the benefits of a diagnosis I reckon is so that you can understand your child more and as they get older they can understand why they feel different sometimes rather than having a vague sense and not know what’s going on. What’s on offer varies from place to place, maybe google your borough and “autism” and see what support is offered.

Thanks for this. It’s definitely clear to me that my child needs some extra support (some of which is already in place at school) and if there’s anything I can do to facilitate that as soon as possible, like most parents I would move heaven and earth.
Thank you again, I hope all goes well with you and your daughter.

I would say definitely get an assessment/ diagnosis. Definitely. Because it's about confirming and understanding your child's identity. They need to know who they are, and why they find some things difficult.

Perhaps your current school believes your child is likely autistic and is putting some support in
Place on the basis of believing that. Unfortunately other future schools may not.

I would ask your CAMHS team (if that's who the 2.5 year wait is with) in an email whether your child will be eligible to access any post-diagnostic services from CAMHS if they are diagnosed privately. Ask if there are any necessary qualifiers for accepting a private diagnosis (eg I've heard others say a private diagnosis from a clinician who also works for the NHS is more preferable for accessing NHS support).

If you don't get an answer, or it's too vague to be helpful, go back and ask who you can escalate your query to higher up at CAMHS.

It's ridiculous that by going private you would be saving them money and one less child on their waiting list, yet they may try to cut you off from future services. Madness.

Thanks for your reply.
I agree, although things may be manageable now with school support who knows what the future may hold. I’ve managed to get further response from CAMHS which was helpful and we will be pursuing a private diagnosis. I’m thankful that we can afford to do so, but absolutely furious on behalf of those who are less fortunate. 2.5 years in the life of a child!!!!! It’s outrageous that child mental health is so criminally underfunded and really heartbreaking.

Hi BuffytheDamnLyrePlayer, we were in a similar position, were told is would be a 3 year wait and as my DS moves up to secondary school soon we just couldn't wait so went for a private assessment. He was given a ASD diagnosis but at present we are having issues getting help which I think are due to it being a private diagnosis. Our GP referred us to a paediatrician for a Melatonin prescription but it was rejected, waiting to talk to GP to find out why, the hospital told us to see our private clinician to get a prescription. We are also having to explore a private OT who can support sensory issues as were told NHS OT would only support fine and gross motor skills. Very frustrating! Hope you manage to have more success as I know what it is like to feel like you are not going anywhere and being passed back and forth with not much happening.