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It's official - DS has an autistic spectrum disorder

(22 Posts)
Balletgirlmum Sun 25-Sep-16 16:54:56

Except according to the two lovely ladies from camhs as far as they are concerned the report from the private ed psych we saw is a diagnoses & they can't understand why his school havnt accepted that as a working diagnoses.

Unlike the other camhs ed psych we saw 3 years ago they totally got DS & the difficulties he has at school. They say they don't think their asd team will accept a referral for a diagnoses as they will take one look at the report we've already got & say but he's already got a diagnoses. There is an 18 month waiting list for that anyway.

They are going to write a strongly worded letter to confirm he should be getting the support & adjustments recommended by the private ed psych (who is well regarded) & they were appalled that he is being punished for having meltdowns.

SisterViktorine Sun 25-Sep-16 17:04:02

An Ed Psych, private or not, cannot give a diagnosis.

Autism is a medical condition and can only be diagnosed by a psychiatrist or a paediatrician.

Yes, maybe your school should accept a working diagnosis, and they should definitely put in support. However, the 'lovely' ladies at CAMHS have done you a disservice if they have put you off pursuing a medical diagnosis as not having one may hinder your access to specialist services in the future.

Balletgirlmum Sun 25-Sep-16 19:36:36

Camhs themselves use clinical psychologists don't they. In my area all NHS diagnoses is via camhs.

pontificationcentral Sun 25-Sep-16 19:43:35

It isn't CAMHS that have diagnosed him though - it's the private EP? Is the private EP a clinical psych? There are sometimes difficulties with private reports being upheld by school boards etc. What does ds's paediatrician say? If his entire team agree with the dx, and can specify what areas he needs support with, then go ahead and apply for EHCP?

Does the EP dx and report give very concrete detail as to what support he requires? Did the EP observe classroom interactions? Does the school agree that he is not moving ahead with the support they currently have in place?

The dx is fine, but a dx in and of itself is only part of the route to getting support (whether or not what you have is an actual dx or not). What are you asking for? (And who are you asking?)
Are you trying to get EHCP in place for school? If so, get on that.

SisterViktorine Sun 25-Sep-16 19:45:29

No, diagnosis via CAMHS will still be psychiatrist or paed. Of course there may be many other professionals on a diagnosis team or panel- but a diagnosis is NOT a diagnosis until it has been given by a medical doctor.

Balletgirlmum Sun 25-Sep-16 19:52:29

Ds does not have a paediatrician. Our GP referred him to camhs.

The private one is a clinical psychologist. He usually works in a different authority (where dd goes to school).

Ds's school is not implementing the recommendations the EP made. They want to access an organisation called Autism Aware for DS.

pontificationcentral Sun 25-Sep-16 19:54:14

That was clumsily worded - sorry. I mean - ds has a dx of x. I don't go to school and say ds has x and expect them to nod sagely and implement a support structure. I am in dialogue with the school about ds being unable to x,y, or z which needs support in a school environment so that he is able to access education. School agree that ds struggles with x, y, z. I produce a report which says ds struggles with x, y and z and requires x, y, z supports to be put in place in school so that he can access education. Alongside these reports is a general dx. The actual important bit is the requirement for support in the form of x, y and z so that he can access education. The important bit is not the dx. The important bit is what support he needs.

Does your EP report have an extensive list of the supports ds requires in a school environment to enable him to access his education? If so, use it, along with report from his paed and medical team, and the school, to get EHCP in place.

A dx without any additional information is interesting in and of itself (and can be used as corroborative evidence to access services when you are clear about what services and supports you need) but it is not useful to an educational professional or a school board in identifying support requirements.

What sort of support does ds need? Does he need additional time? Does he need OT as he struggles with fine motor or sensory input? Does he need a safe space away from the class if he becomes overwhelmed? Does he need a completely differentiated curriculum due to learning disability? Is he verbal?mdoes he have disordered speech? Does the EP recommend SLT?

A dx is a dx. What does he actually need?

pontificationcentral Sun 25-Sep-16 19:55:33

Ok sorry, cross post. So Autism Aware are an organization that help to support children with autism? So they accept his dx? And are working to find out how they can support him rough a specialist organization?

pontificationcentral Sun 25-Sep-16 19:56:54

So school are accessing Autism Aware in your son's behalf, but they don't accept he has autism?
I'm a bit lost. Sorry. It sounds like they do?

SisterViktorine Sun 25-Sep-16 20:00:35

CAMHS will have medical doctors who work on their diagnosis team. As I say, there may be other professionals on these teams who will feed into the decision. However, the final letter that is the actual diagnosis WILL be signed by a medical doctor.

Your GP was presumably attempting to help you access this diagnosis team by referring you to CAMHS. However, the lovely ladies you met at CAMHS don't think their asd team will accept a referral for a diagnoses so you haven't actually even got as far as the right referral yet.

I'm sorry it's such a fight.

pontificationcentral Sun 25-Sep-16 20:01:30

Ah right. I think I've got it. They accept his dx of autism, but are seeking their own specialist advice instead of putting in place the EP strategies?

I think it sounds okay - they will have more experience with ds over much longer periods of time than the assessing private EP. And they are moving ahead with accepting the dx into what support is needed. It must be frustrating though.

There is usually some to and fro before the actual support needed is nailed down.

What recommendations were made? If for example, the EP recommended 1-1 support, this is a bigger decision. Are you able to start the application process yourself? It is much easier with school on board, so it might be beneficial to wait for Autism Aware report too?

Frustrating, but the ball is rolling. Just gotta keep pushing it?

Balletgirlmum Sun 25-Sep-16 20:01:33

His school punish him for bad behaviour & csll his meltdowns Wobblies. We had a meeting prior to him starting, just after he started & two further meetings one following a major meltdown & one following him seeing the ed psych.

The ed psych report was very comprehensive & recommended several reasonable adjustments a couple of which his school has implemented but most of which they havnt (such as a red & green card system & a safe place for time out).

He now gets extra time for slow processing speed & use of a laptop for dysfluent handwriting (we had to fight for that).

Your references to paed & medical team confuse me.

We have a family GP who referred him to camhs but no 'medical team'. There is an 18 month waiting list for camhs own asd assessment.

Balletgirlmum Sun 25-Sep-16 20:04:13

The school are not currently accessing the services of autism aware. Yu have to have a working diagnoses to access their services. They are an organisation that go into schools to help the teachers with strategies or whatever (so I'm told).

Balletgirlmum Sun 25-Sep-16 20:06:22

The camhs ladies said they will try & get someone from their asd unit to write a letter confirming that his school should accept the report we already have.

pontificationcentral Sun 25-Sep-16 20:13:07

Can you begin the EHCP process yourself?
Personally I would be having a chat with the gp again - they have referred for assessment, and yet the assessing authority are saying they won't assess? An 18mo waiting list is a pain in the butt. So you have the option of accepting the dx from the EP yourself (getting a letter from CAMHS saying they will not assess because ds has a dx).

You could also call the LEA and speak to whoever does inclusion for your school. (The inclusion or accessibility team usually have a number of inclusion workers that cover different schools) and ask their advice. Ask if the school are able to access Autism Aware using the EP dx. Ask if the the inclusion worker covering your school can come out and do an observation etc. And then discuss what steps you can take as a parent to work with the school to get proper support in place. This is best targeted at the education authority to be honest. Use lots of 'working with the school' terminology but make it clear that the difficulty is that they seem to be hampered by the EP dx, rather than empowered by it.

Balletgirlmum Sun 25-Sep-16 20:16:59

He currently goes to a private school. The local school we applied to was full & we feel the other local school would be very unsuitable for several reasons.

Camhs today said that the school he didn't get a place at is a very good school & he would probably get better support there. But they are over subscribed.

SisterViktorine Sun 25-Sep-16 20:18:12

At CAMHS there will be a team of people who meet at intervals to decide which cases on their 'list' of referrals are going to get a dx of autism. This team may include a SaLT, OT, Ed Psych, Clin Psych... but ONE of the team will very definitely be a medical doctor by training- i.e. a fully qualified Psychiatrist or Paediatrician. This is the person who will deliver the final diagnosis and write the letter that is your permanent proof that your DS has an autism diagnosis.

Until you have that letter signed by somebody on the CAMHS staff who is a medical doctor your DS only has a 'working' diagnosis.

This is fine if it is accepted and all necessary support put into place. However, in my county for example, your DS and his school would not receive support from the LA Autism Outreach team unless he had a 'real' diagnosis. Also in my county, if you wanted a specialist autism resource base placement it would be totally out of the question without a full diagnosis.

Balletgirlmum Sun 25-Sep-16 20:19:55

He came very very close to exclusion last year.

pontificationcentral Sun 25-Sep-16 20:26:42

Oh a private school. That does make it all way more difficult, more expensive, and often not worth progressing, unless you have a ton of money to throw at them to provided 1-1 support.

In most cases, pursuing an EHCP which would allow a specific school to be named (circumventing the over subscription issue) is your best bet. So I would be calling the inclusion team at the education authority of the other school, and discussing that your ds has a dx of x from an EP, and you are going to have to move him to state as his current private school are unable to support him. Ask what the best way of doing this, as with his dx you know that it will be important to manage the change in routine appropriately, etc etc.
If you can get CAMHS to put that x school would provide an appropriate environment where ds could access the right support, because x,y,z, that would be even better.
Once you start having to battle a private school over SN matters, you have to ask whether you are giving your money to the right place. You are effectively paying them to provide an environment that is not working for your child.
If you are certain you would like to stay private, start approaching other schools with a list of support requirements and gauge response.

Balletgirlmum Sun 25-Sep-16 20:33:35

There are no other private schools in the area.

He doesn't need 1:1. He just needs some adjustments & understanding. There are some things about his current school that really suit him.

pontificationcentral Sun 25-Sep-16 21:23:52

OK. Good luck with the continuing liaison. It's harder with private as there is no LEA to utilize for external advice (and a bit of coercion) but hopefully once you manage to get the medical dx side sorted (via GP/ CAMHS) the school will put in a bit more effort. Unfortunately a lot of private schools don't do well with SN. Hopefully yours will be different.

Balletgirlmum Sun 25-Sep-16 21:28:57

I have to admit I did lay it on a bit thick with regards to agreeing that the over subscribed school was very good with an eye to the fact that it could possibly be named in the future if need be.

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