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Private ASD diagnosis(13 Posts)
Just wondered if anyone has any experience of going private for ASD diagnosis? My DS is 6 and everyone involved with him is sure he has autism. I've also recently been wondering about ADD as well. I started the process in November 2014, and got onto the waiting list with camhs in April 2015. The waiting list here is ridiculous and we could still have another 15-18 months to wait for assessment.
I'm very tempted to borrow the money from my Dad and go private but unsure if it's the best thing to do. Has anyone done this and did you find you could access more services/support ones you had?
Also how did you choose where to go? Someone has recommended a clinic but it's 3 hours away(logistical nightmare as we have no childcare for my other DS)There is one place in the town where we live but the one person I've spoken to who's been there didn't rate them.
Would really appreciate any input xx
I really doubt that dx will bring any support with it, be it an NHS dx or through a private Dr if you are UK based. What services are you hoping to receive?
I will be quite honest. We have had zero support after diagnosis - NHS & Private diagnosis for my children. For us, it was more about making sure the correct diagnosis and support was put in place for their EHCP's.
Is there anything in particular you're hoping for?
There are a couple of things I've looked into where a diagnosis was required, a play scheme run by a local support group, and a parents course run by a charity are the main things that spring to mind. His teacher has also said she feels it would help to get a better idea of exactly what his issues are. I also wondered if it would make it easier to apply for DLA and possible EHCP if needed.
I have heard sometimes that private diagnosis isn't accepted by doctors, education authority etc.
We don't get any support apart from school/EHCP either. Dd has severe ASD and learning difficulties. But it helped our Dla application. we applied pre-dx and were refused. also refused when we asked for a reconsideration. when I appealed the official dx came it and we were awareded DLA. In theory Dla is based on care needs and not on dx but I do think that having a dx does help.
I know it is different in different areas, but a diagnosis has brought more support, from CAMHS and school. Tbh, CAMHS in my area seems good. Yeah, not brilliant, but much better than what I read on these boards. I get invited to support groups and workshops, averaging about 2 a month. School are also listening to me and are more on board. In turn, they are also listening to me more regarding another dc who has a different disability, but they are starting to make more reasonable adjustments for her now (they were pretty shit, I know more now what they should be doing).
If I had gotten a private diagnosis, I do feel like I wouldn't have got the same support. You need to be known to cAHMS to access there services here (eg, drop in with an ed psych, OT, other allied hPs). School would have continued to see me as neurotic.
I'm only just into this journey, did was diagnosed late last year, but for us, diagnosis has brought more support, but just how much remains to be unseen.
DLA isn't at al dependent on dx so just fill in the form.
Our EHCP assessment was agreed before dx.
pay for a place on the course and phone the organisers of the playscheme direct and explain about the long waiting list for dx, they will probably be very understanding.
The bottom line is there is very very little support out there. DO apply for your DLA and start paying for your own interventions/activities.
When you say everyone thinks he has ASD, who do you mean? School could arrange an educational psychology assessment which although won't diagnose, may help with some of his difficulties. Also, where I live, you can self refer to OT, which may be helpful if he has sensory issues.
We got a private diagnosis last year. Not much extra support as yet although CAMHS have accepted it as a diagnosis so not needed to do their own. We are now waiting for a cognitive assessment through CAMHS and are trying to get a statement which I think is the only way to proper support but there is a good chance he won't get it as he isn't 'bad' enough. It's tough I'm afraid. It has helped DH and I understand DS more though which has been one positive.
There is considerable support without EHCP in schools, so even if your child can be managed within school that doesn't mean they can't get exactly what they would have with the old statement system without any statement/EHCP. (eg ds had full time including lunchtimes 121 without dx or EHCP). We pursued the EHCP purely because I wanted funding to 25 and a special school for him.
Personally I think dx is a good thing for understanding your child and for them understanding themselves and also to access enhanced medical treatment (eg easier to get special treatment in hospitals and dentists). I think it provides legal protection and rights. I don't think it has much impact on the level of care in schools, that's far more down to the school itself IMO
It very much depends on area. In these parts diagnosis brings access to other agencies that have funding such as autism outreach but others can be accessed without a diagnosis. Its more that you are pointed in the direction of various support groups by staff at workshops for the newly diagnosed or referred to them via the comm paeds.
tbh the biggest difference with HFA for me was that school stopped assuming that social communication difficulties were a result of poor parenting or that I was imagining or exaggerating problems.
Yes I have gone private but didn't get the asd diagnosis. It was worth every penny. He would never have been assessed on the NHS. It was very in depth. It wasn't cheap. I went to NHS doctor privately to avoid the "we can't accept private diagnosis" problem.
Also again it depends on your county. In my county we have two very good asd schools who provide asd outreach to schools. You can't get that without a Dx.
But I also have a severely / profoundly autistic boy and he hasn't got a EHCP and no garantees of getting one dispite being non verbal. So I can't say that getting a diagnosis has helped beyound him getting in a asd nursary so far. E has had no OT, two hours of SLT so going in that basis I'm not hopeful.
No Dx needed for DLA.
It could help your case to see so,done who diagnoses on NHS and private, but I agree that either way there isn't a lot of support.
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