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DS's GP referral to CAMHS refused because he didn't fit the criteria. Now what?!

(13 Posts)
DontputyourfingerinthejellyNel Thu 13-Mar-14 14:45:51

Well - just that really!

DS has been causing me some concern since he was much younger. He is now 7. He is showing many signs of being on milder end of the autistic spectrum (sensory issues, meltdown issues, difficulty socially, massive demand avoidance issues resulting in a full scale war over being asked to do something quite reasonable, not able to concentrate in class because it is "too noisy"). He has been miserable and asking me for assistance for some time. It is getting worse. At his worst he has said several times he wishes he was dead because his brain doesn't work properly for example.

DD has ASD but more classic autism symptoms. She has speech and language difficulties, anxieties over plans changing, food issues etc. ASD seems to run in both our families with a few other relatives on the spectrum.

I went to the GP and explained my worries. He asked to see DS. I brought him in the next week. He asked some basic questions about his life, what he was finding a problem etc. he referred him to CAMHS but I don't think he got the full picture of our worries and concerns.

Then the other day we received a copy of the response saying DS doesn't fill the criteria. Suggesting we sort it through the SENCO and school nurse.

The problem is, although DS is having trouble concentrating and has been moved out of the 'top group' recently and is often having to stay in at playtime to finish work, the school don't really see any of the other behaviours. He comes out of school very stressed often but he lets it all out at home. He shows restraint but we pay for it later. But he says that most of his stress is coming from school. After a bad day it doesn't take much to set him off.

Please does anyone have any idea what to do now. He needs understanding and answers and it looks like that will be difficult just because he is not causing school any big problems.

AttilaTheMeerkat Thu 13-Mar-14 15:26:12

I would ask your GP to refer your son to a developmental paediatrician seeing as CAMHS cannot and will not do anything. That may be a blessing in disguise; they certainly have their place but ASD is not really their realm of expertise or specialty.

What is the SENCO like, have you met this person previously?.

Many school staff simply are not trained or skilled enough to assist the child with additional needs. If the child is both quiet and compliant such children often go unnoticed and ignored within a classroom setting.

Re school I would seriously now consider applying for a Statement for him as his additional needs are simply not being met. That could also be the reason for his behaviour after school; he lets out all the frustrations of the school day because at home and with you it is safe for him to do so.

IPSEA's website is good and has lots of info on it

AttilaTheMeerkat Thu 13-Mar-14 15:27:07

I would also talk to the NAS (National Autistic Society) as well as they may be able to advise you further too.

MrsDeVere Thu 13-Mar-14 15:32:07

Message withdrawn at poster's request.

moosemama Thu 13-Mar-14 16:03:22

Our GP advised us, based on her previous experience, to back up all referrals for ds1 with a detailed history and where relevant timeline.

When he was being referred for ASD assessment we typed his history from prenatal to the, then, current date. He was referred to a Paed, who then referred to a multi-disciplinary team and both the Paed and the Psych who saw him said how helpful the background was in giving them a full picture of ds and his difficulties and deciding whether or not they should go ahead and assess.

I agree with MrsDV, find out what the assessment pathway is for ASD assessment in your area and push. When ds's referral to the multi-disc team took a while I called up and they offered me a cancellation, I had had no idea you could do that and it taught me that often taking things into your own hands is the only way to move things forward.

The other thought I had was to check out your local Educational Psychology service and see if you can self-refer. In our area you can, but your request still goes to a panel, which prioritises cases.

After school had insisted ds was ok, when it was blatantly obvious to anyone with an ounce of sense that he was actually going through some sort of breakdown, I called the EP department, got put through to their crisis line, had a long phonecall with the senior EP the next day and had had a home visit by the end of the week. That EP was very involved in taking a tough line with the school for refusing to recognise the state he was in and her observations and work with ds also formed part of his diagnosis. We found the number for the EP department on our LA's website and to be honest I just rang them and burst into tears, the lovely receptionist listened and put me through the right person to move things forward.

I'm not saying it will work the same way in your area, just that sometimes you have to just try phoning everyone you can think of that might be able to help to find out what you can do to get things moving.

OneInEight Thu 13-Mar-14 16:45:43

It unfortunately is fairly common for CAMHS &/or Community Paediatrician to refuse the referral. We were refused by the Community Paediatrician's twice and CAMHS once before getting seen by someone despite full support from the school. Go back to your GP and make clear whether you are wanting diagnosis (Community Paediatrician may be better choice) or help with mental health problems (CAMHS best choice) or both. In our area CAMHS can also do the diagnosis. The second time I went back to the GP I have to confess I burst into tears with the stress but it did the trick and he redid the referral whilst I was in his office.

moosemama Thu 13-Mar-14 16:53:47

It's often been me bursting into tears that's been the catalyst for ds finally getting help. I used to try so hard to hold it together but have learned that sometimes they need to be reminded to see you as a human being, instead of just another referral or annoying bit of admin to deal with.

youarewinning Thu 13-Mar-14 19:38:30

Email Camhs yourself! I did!
I emailed stating school didn't think ed psych was right route so saw GP who though Camhs or dev pead correct route. dev pead refused and now Camhs were. I then listed exactly why I thought Camhs should see DS.

Sent email at 9pm by 9am the next morning I had an appointment!

youarewinning Thu 13-Mar-14 19:42:19

Like moose I took in detailed list - 1 hour with clinical psychiatrist discussing the list and referral for asd assessment made.

There is a wait though for appointments and assessment.

youarewinning Thu 13-Mar-14 19:42:48

Psychologist not psychiatrist!

DontputyourfingerinthejellyNel Fri 14-Mar-14 16:44:52

Thank you very much for the responses. I think I will approach the school more forcefully as I haven't done anything "official" with them yet. I did go and voice my concerns with his teacher last year several times but didn't get very far as he couldn't see it. DS also tried telling her but was dismissed somewhat (DS is still very resentful and feels let down that he didn't listen to him). His teacher last year IS the SENCO unfortunately hmm.
This year his teacher has been more helpful and has tried to reassure DS.
I feel like maybe the GP thought I was being over anxious. DS is very eloquent (almost a little professor and quite serious). I think maybe the GP was a little too bowled over by this as he kept comnenting on it. Also he asked DS if he had any friends and then seemed reassured when DS listed off a few names.

AgnesDiPesto Fri 14-Mar-14 17:28:00

Perhaps your GP didn't realise referral would be to paediatrician not camhs and camhs didn't see fit to mention it? In our area you can't see camhs for suspected autism, only if you have mental health problems on top of your autism and then you have to be pretty much suicidal.

Have a look on your council or nhs website and see if there is an autism strategy for diagnosis?

moosemama Fri 14-Mar-14 17:40:29

Same here Agnes, ASD assessment is via Paed referral, who then refers onto the multi-disciplinary team of which he's a part. CAMHS don't do anything ASD related, even comorbid mental health issues.

My ds has always had a few friends and a best friend in particular. It said far more about how lovely his friends were than his ability to make friends and was therefore irrelevant to his diagnosis, iyswim. In fact it was included in his statement that his best friend acted as a social facilitator to ds, enabling him to interact socially with his peers at school. It was observed that when his bf was away from school, ds was actually isolated and unable to join in.

Also, ds could rattle of a list of friends when he was in Reception year, but not one of them even knew he existed, even the boy he insisted was his best friend at the time. sad

My ds is like yours, very articulate and 'adult' in his conversation skills. He always impresses medical professionals, which is why you need an assessment from a specialist that can see past it.

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