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SN undiagnosed genetic conditions

Private assessment advice

9 replies

tiredmummy76 · 15/01/2020 00:15

We have been waiting for 2 years for an ADHD & ASC assessment for my now 10-year-old daughter. Due to lost forms & incomplete forms being sent by the school (to CAMHS), and almost total lack of SENCO support from school we have just hit the back of a 20-month waiting list (because I took the process out of their hands). My daughter isn't doing well, chronic sleep problems, extremely anxious, she is hoarding (checks the bigs, hoards bags of rubbish), has lots of emotional outbursts, is struggling academically, is extremely defiant and uncooperative. She is starting secondary school in September and I really want a diagnosis and appropriate support in place before she starts. I am looking at private alternatives to CAMHS, does anyone here have any experience with private assessments? My daughter is quite complex and I suspect probably has traits that are considered ADD & ASC, as well as the more recent OCD and anxiety. Any advice very gratefully received. The whole family are so tired and emotional!

OP posts:
AlunWynsKnee · 15/01/2020 00:20

We got a diagnosis of ASD etc from the NHS but we struggled to get help for anxiety. We did go privately to see a paediatric psychiatrist for a prescription of anxiety medication but we are struggling to find ANY therapy for the anxiety/OCD.
It might be worth getting this moved to SEN Children for a bit more traffic.

tiredmummy76 · 15/01/2020 00:26

@AlunWynsKnee - many thanks for your reply, I will look at posting this on SEN children. Cheers.

OP posts:
Ozziewozzie · 20/02/2020 07:56

Hi there. I’ve only just seen your post.
The NHS ASC assessment is required in order to obtain full funding in schools etc for and additional support or outside of school.

However we are literally about to have our son privately tested for ASC. The National Autism helpline emailed me a list of centres where they carry out these assessments. I called every one on the list (8) had a chat and asked their price. They all seemed to offer pretty much the same testing. However the pricing was very different. I chose someone who seemed more ‘helpful’ warm and knowledgeable and someone who offered advice, direction and very much wanted to lease with my sons school etc.
In my opinion, the sooner we can understand our children and how autism effects them individually, it helps us parents understand and support our children better.
If you’d like to know how I get on with our assessment etc, just let me know PM me.

Buscake · 20/02/2020 08:05

The information on this thread isn’t fully accurate - you do not need an nhs diagnosis to access support in school. Support is on a basis of need, not diagnosis. Diagnoses are given by practitioners who are accountable to their own professional bodies; they wouldn’t diagnose unless it were true.

Please look into applying for an EHCP, or at least having a frank discussion with school about sen support. I hope the waiting list moves faster than they have said Flowers

Ozziewozzie · 20/02/2020 08:55

You don’t need an NHS diagnosis to access full support or EHCP support but without it, the funding and support will be restricted. This is a fact as explained clearly to me last week. ( unless it differs in areas)
I enquired as I wanted to find out if our private assessment would access anything to support my son etc.

Buscake · 20/02/2020 12:39

Support and funding will not be restricted without an nhs diagnosis. That is categorically not true. A private diagnosis would be equally valid, as I explained above. The legislation surrounding SEND makes it clear beyond question that support is based on need not diagnosis. That is a fact. This legislation covers all of England.

Ozziewozzie · 21/02/2020 06:54

@Buscake I can assure you, I’m going through it all right now. Perhaps it differs in areas. But it’s exactly as I’ve been told from EHCP and the school.

Buscake · 21/02/2020 07:35

@ozziewozzie they may well have told you that, but the advice you have been given is unlawful. I have two kids with EHCPs and work for sendiass. I’m not trying to be difficult or argumentative, the advice you have been given and are cascading to others is not correct. It does not differ in areas; the law is the law and it trumps all local policies.

Ozziewozzie · 21/02/2020 09:08

@Buscake
I didn’t for one moment think you were being difficult or argumentative. I’m raising question as I am going through all this currently. I’ve actually spoken to them 3 times in the last few days and had this very conversation. How bizarre.
Oh well, as things progress I’ll soon find out for certain.

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