I don’t want ds autism test redone ? Can I refuse

[Seventhirtyanditsearly]

Ds has a diagnosis of ASD (private) as the waiting lists are so years and we were told his referral would be rejected anyway as he wasnt at any kind of nursery or school setting (?)
Since starting every time we discuss something and mention asd we are told ‘no he’s doing that because he’s little ‘ or ‘this is typical 2 year old behaviour it’s nothing else’

We knew there was something so we pushed ahead privately so we had the diagnosis as could then access more help while he’s still really young (2).

Now the nursery and HV have told us that they are referring to get a nhs neurodevelopment assessment (isn’t this an ASD assessment ?) we have declined saying he only just had one !!! They want it done I feel like they are querying his private diagnosis? (It was done in accordance with NICE guidelines so it’s valid)

What can I do ?

OP, when you got the private assessment, did they include in their letter suggestions of things that you or the nursery could implement to support him going forwards. Once we got our diagnosis, the school SENCO set up a meeting to go through all the advice in the letter and agree a strategy. If nursery haven’t already done this, could you ask them to? If they won’t it’s clear that they can’t support your son but it would also be a good starting point when you are ready to look for a new setting for him.

My daughter would scream anytime a child or adult would go near her, when she was 2 , she is now 6 and she no longer does that. She can cope with children playing alongside now and is fine with adults . So it may get better with age.

Hi there
We had very similar with one of my children and her private diagnosis - all completed via NICE guidelines at a reputable clinic. The plan was to redo the ADOS.

On our first appointment I took the diagnosis report and just through observing my daughter in the appointment, the paediatrician fully agreed with the diagnosis and just wrote a clinic letter stating his agreement and the things he observed with her eg. No eye contact, no verbal communication at all etc etc. I guess my daughter is quite obviously autistic and makes it easier for professionals as she was a pretty text book autistic anxious girl!

After that it meant she did get some occupational therapy and some speech therapy for her mutism.

Don't worry about it too much. I think before seeing you they'll be slightly wary of a private diagnosis as there are some very dodgy ones about, but on seeing you they'll be fine with it.

Our daughter's private diagnosis and subsequent reports got her an EHCP and nothing was said about it as the school and all professionals that worked with her could see it was plainly obvious she was autistic. The NHS confirmation didn't actually bring anything new to the table other than the help of a brilliant OT and SLT

Good luck, you'll be fine x

It's not double checking though. It's a neuro developmental referral. That doesn't mean that clinician will want to redo the autism assessment at all. I think the nursery haven't put this well to you but for your child this is a massive step forward.

See this as your chance to get into the NHS system, in the long run it can’t do any harm. Take with you the reports you already have and the most likely outcome it will be recorded on his notes that he has autism but you will then be under the jurisdiction of the peads who can be a gateway. Even just for the ehcp needs assessment having a peadiatrican can help when it comes to their report.

Exactly so.

And nursery are right in that a lot of 'autistic' behaviours fall within the scale of normal two-year-old development. It is very young for an assessment and any support is likely to be identical to that needed by any child of that age.

The fact that they have called for the official assessment means that they ARE taking you seriously and are 'on your side' when it comes to your son's development. Don't be too hasty to criticise them

No they really aren’t on our side- they’ve spoken to me in such an unkind almost. accusatory and dismissive tone.

da has had an ‘official’ assessment. By a de who does the same in the nhs following nice guidelines !

Im pulling him out of the nursery. He’s 3 at the end of May so I’m just going to look for somewhere from September and let him decompress from all the stress lately and see the gp as they have all way been supportive

*ds
*dr

Sorry was having my phone snatched away as i typed!

Please get the EHCP process rolling while you wait to find another nursery place. This will ensure that the LA has an obligation to provide a suitable setting and the nursery will be prepared and able support him.

Yes I’m looking into that today and I’m going to do the request myself I’m quite anxious as I’m not very good with forms and stuff I’m hoping it’s not really difficult

Good luck. We had portage support us through the process and they were a fantastic service. Not sure if that would be an option in your area.

He a look at the ipsea website they are helpful. Expect to be turned down at first effort.

have you been referred for portage? That may help him too - and provide more evidence for the application - if your your HV may be able to refer for that but if not it’s something an nhs peadiatrian should be able to help with

We weren’t allowed as he goes to nursery but I will be able to now once he’s not going anymore

Portage is allowed. They should be offering 'portage outreach' if he's in nursery. They visit the nursery and advise them how to help. But honestly, this nursery is not good from the sounds of it.

DD1's preschool did their best but they didn't have the skill/training to follow portage advice, so they just let DD1 do whatever she wanted, so she didn't learn. It was much better when she moved to special school.

Some areas no longer provide portage to DC in nursery.

My area stopped long ago so we decided to delay nursery even though we were entitled to free hours. The portage support was invaluable.

"You went for a private ASD assessment? it is likely to be positive. You go for any other private assessment, it is likely to be positive. The NHS are offering you a proper neurodevelopment assessment, 1000x more valid"

I will respectfully disagree. There is good and poor practice in both sectors. In fact, I've seen more thorough private assessments as funding allowed more time and resources to complete it. Depends where you go.

The relationship with the nursery sounds awful. If they are unpleasant and dismissive I absolutely would leave the nursery. I had the opposite experience with ds. I wasn't ready to have ds diagnosed and they pushed hard for it. It did sour things as I felt they were being very insensitive.

Go with what your paediatrician advises. A private diagnosis, no matter what standards it adheres to may not be adequate for your DC to receive NHS treatment. If you need CAMHS or OT for example you may need to pay privately as your diagnosis wasn't NHS. I am in a similar position for something with adult child. The diagnosis is private from a consultant but I need to fight for access to medication on NHS, it's v expensive for my DC privately.