so upset about CAMHS meeting yesterday, can't pick myself up

[Jerbil]

saw DS1's psychologist who said that he did not have autism but that there was something but she didn't know what. with that she supported us in going for a 2nd opinion and even wrote a letter to my GP about it. the 2nd opinion psychiatrist dx ASD at a different CAMHS location.

But now psychologist has said she's not changed her mind and if we stay with her team they will not work with the diagnosis, but we can go to the other CAMHS where they will.

I cannot ignore the dx! and so have no choice but to go to the other CAMHS. I just feel so down. I spent 2 years with these people thinking of different strategies for his food issues in particular. he knows them, and now we have to start again.

How are these people 'diagnosing' your child? Either he has a diagnosis or he doesn't, and that should come from a Paediatrician. CAMHS shouldn't be making autism diagnoses.

You are being messed about.

Go back to your GP and ask to be referred back to a community/developmental Paed asap.

CAMHS can diagnosis, as can a paeditrician, as can a clinical psychologist.

He was dx by a psychiatrist. she's very experienced and did not need all the boxes to be ticked on ADOS for example to dx him as he has more than enough symptoms to meet diagnosis criteria.

So why is a psychologist now going against what the psychiatrist diagnosed? Was it a formal diagnosis? I dont understand.

It sounds very stressful for you to have professionals disagreeing with each other.

Also, 'CAMHS' cant diagnose, as such - a medical doctor can, so a psychiatrist, Paed or similar, but not a psychologist.

I think you are splitting hairs Lovely re CAMHS and a Clinical Psych can diagnose as part as a team.

www.nhs.uk/Conditions/Autistic-spectrum-disorder/Pages/Diagnosis.aspx

I'm not 'splitting heir's, wasuup3000, I am trying to help the OP figure out what is going on here, and if it is acceptable. CAMHS in some areas can be unhelpful. If the OP has received a diagnosis already, it seems quite wrong that another professional could come in and override that. It doesnt sound as if the psychologist is acting as part of a multi-team assessment.

OP, I do think you should ask CAMHS to clarify in writing what the story is. Perhaps it is time for a full assessment, ie. ADOS or similar? It is really important you get clarification, otherwise you and your child are in limbo.

Good luck.

Ask what the psychologist needs in order to feel confident that th diagnosis (tho not a perfect fit) is accurate. A third opinion at Great ormond street may do it?

Hi OP big hug for the stress.

CAMHS can diagnose. They usually do it under a multi disiplinary team. However that said mine didnt have a full team running and they got in a locum psychiatrist who gave an incorrect dx. I was also supported by the MH nurse there to go for a second opinion. A lot of camhs are inexperienced to actually help further once dx is made and I was told that should ds get a dx they would wave us goodbye as they have no aftercare experience with autism just purely the dx process through a team.

I would say stay calm and go with the other camhs for support that did the dx. Ignore the other one completely as they dont count anymore. Putting quite bluntly the psychologist doesnt have a clue what he/she is doing and has her nose bitten off because someone else didnt back up her opinion. You wont get anywhere or anyhelp with that one :)

If you are upset at being played ping pong with walk into your GP and tell him straight that this is playing with your DS future and insist on a 3rd opinion like GOSH or Maudsley (DS was seen there within 4 months) and you will get a thorough assessment. Your GP can make the referral to Maudsley himself without camhs writing to him telling them the referral is because you have conflicting dx opinions and you have lost faith in the current camhs.

GOSH from their right up need back up from your area camhs. Maudsley did not.

Lovely - we have been through two full assessments.
assessment number 1 took over a year. CAMHS psychologist did ADOS, IQ, school observation, interview with me. outcome = not ASD, not the same in each situation, too social one on one with an adult, has an imagination.
Assessment number 2 CAMHS (same city different location) Psychiatrist did ADOS (only scored in one category), informal play in their setting, interview with me, school observation. outcome = ASD. too many features not to dx. said he was complex and not surprised the other CAMHS couldn't dx. he IS different in diff settings! does have imagination but it is limited and repetitive dx = Aspergers.

hope that helps?

Oh and its two grilling assessments within a two week period but you will walk out knowing once and for all after the second assessment.

Hi Coff/maria

I will basically have to move on from the first one, forget we even went there. she is v experienced but IMO is very restricted in her opinions about autism. she doesn't seem to think they can vary outside of the norm for anything without a dx being discounted.

I could not ignore the dx and as DH (who usually has v little opinions about much) said why would we, would we have even gone for the 2nd opinion if we were going to drop it as soon as we got it.

I think coff summed it up in a nutshell. and that's exactly how my friends are seeing this too.

The first time my ds was assessed at 8 I was told he didn't meet the autism criteria, a year later at 9 he did. Partly due to little things: he had two "friends" when first assessed, he played nicely in playground when observed, we perceived him being very imaginative (when in fact it was repetitive play) I think it helps to err on side of diagnosis, as inevitably their bad days will be the things you need help with, not their good days, ifysim.

What a nightmare for you jerbil, I really feel for you.

FWIW Dd3 was dxed at CAMHS by a psychiatrist. She used the DISCO assesment, the opinion of several other proffs eg salt and OT loads of info from us and her own professional judgement.

Dd3 is also very different in different settings.

What is your feeling, do you think he has ASD? It sounds like the first proff is determined not to see it in your DS. I don't understand why a proff would do that because surely the whole point of a dx is to help the child

My son also has food issues, and it has really helped to see it from a HFA point oif view, rather than just getting fed up with his fussiness. He eats v well, just has quite a set idea of what he likes to eat! Textures, tables manners are the issues with us, also habits - so foods with labels like chips he likes, whereas a boiled potato is unspeakable. Shop pizza he knows what he is getting whereas homemade pizza is running gauntlet of unknown textures and consistencies. Also he likes to touch his food when is eating it, rather than use a knife and fork, I suppose to check it for alien substances.
He also loves cooking, and that engages him with things he won't normally taste.

I found knowing that he had HFA/Aspergers made me so much more able to see WHY he reacted to food in certain ways. Triggers sensory issues habits all those things.

So maybe your team, by approaching from a different angle are tackling symptoms, not the real reason for his food issues....Obviously I don't know what your experience has been, nurturing or otherwise, of the first team, but sometimes it is possible for one therapeutic approach to distract from the main issue.

Hope you feel better soon, and can get everyone on your side, it is so frustrating to be caught up in other people's bureaucratic webs, but in the end the person who will help your child most is YOU, and the knowledge you have. Every professional intervention is pretty limited compared to what you can do for your child with the right information.

Dd3 has lots of rules around food, there are certain things that she will eat but not at the same time as other things.

For example she likes sausage and chips, if it is from the chip shop she has red sauce with the sausage but the chilps are not allowed near the sauce, if they go in the wont be eaten. Yet at macdonalds[god it sounds like we always eat crap], she will have a tub of sauce and dip the fries into it.

I cannot follow her rules so it can make mealtimes difficult but as far as I am concerned the food thing is directly related to the ASD.

She doesnt use cutlery either and would live on marmite sandwiches if she could.

I agree with the pp who said go back to your GP and demand a referral to a specialist at one of the big hospitals. This must be so stressful for you.

Hi Jerbil.

It just rings bells with me. The first psych told me DS was not on the Spectrum but is very "complex" told me to go get his hair cut and he will concentrate better at school. That there is something but he cant put his finger on it but doesnt expect it to go away over night but carry on as you are you are doing a great job.

I yell for second op london (which MH Nurse hinted at a second op but in this area) DS was complex alright and he was dx with AS/ADHD/SPD/Tourettes/SCD and Specific Learning Difficulties. So much for just getting his hair cut! I was also told due to the complexity and how high functioning he was it was no doubt hard for our local camhs to work it out.

Stick with the one that supports you and you will do fine your DH is correct you wouldnt have battled for a second op if you didnt believe in your hears something was up x

Oh, food,, food, food. A nightmare. he eats pasta shells from tesco but not asda (theirs are too stripey!) only pizza in wedge shape not square, carrot circles, no other shape. the list of rules is endless, the food isn't unfortunately.

Get his haircut, OMG! DS1 so far has a working dx of SPD, VS, and AS. they were looking at ADHD at the old CAMHS but I'll wait and see what the new CAMHS have to say.

I'm not going to go back to the GP cos the CAMHS is at the major childrens hospital and I cannot get any higher, well only one level.

I'm just going to decide to go the dx route, and stick with the new CAMHS. It's such a shame that I have to leave all that shared knowledge at the old place but some will be in his notes. and if they use different strategies due to his AS then that will surely be better than treating him the other way.

On a plus note. we got DLA today. It's taken 7 months and it's been backdated! so one battle over with thankfully.

Jerbil, please don't worry about the food. It is one of the few things in life you can control quite easily (as a parent) - compared to all the other problems that can beset AS or SN children (socialising, learning, sleeping). If you think about it in a very extreme way, if you liked your sandwiches cut in triangles and someone plonked down a large doorstep, you probably would feel less appetite for it. I think that side of the AS personality is part and parcel of attention to detail (a good thing perhaps in other fields?), and just wanting to feel secure in a very confusing world.

DH (who doesn't have AS at all) always tells me "he eats with his eyes" - and finds food served in unappetizing manner - table unlaid, smeary plates, gravy drenched food absolutely offputting, so I suppose as an adult there are lots of ways we too have food sensitivities, just can control them better because we are in charge (and are allowed to say no), whereas if you are a child you are completely at the mercy of what adults give you to eat...

Glad your DLA came through. I find ds2 is very wearing - but sometimes one just wants to discard all the "problems" and just enjoy him warts and all. His Dad has just taken him to Brighton on the train with his sister - such a scuffle getting them all out the house, but I think they will have a great day despite all the "issues" that no parent of a NT (10 year) would have to put up with..

Hope half term is a peaceful time for you.

Hi

I do feel for you but I am sure there is a lot of 'politics' behind these types of decisions and by politics, I mean, funding implications.

Funding, or lack of it, dictates how professionals view issues. It is easier to say 'no dx' than say 'dx' but we don't know what to do with the child and don't want to be responsible for funding him.

The issues about food etc are so indicative of these types of disorders and I think children at the AS end of the spectrum can be so much more complicated to dx as they learn to follow rules and quickly develop strategies so they can 'pretend to be normal'.

But as a parent of a child with AS, I know as much as you do, that there obstinacies and difficulties are qualitatively different from other children. Liking only one type of pasta etc becomes disproportionately important because it is a routine which helps the child feel secure. If you don't understand AS, you don't understand this.

People in the UK seem to get very exercised over diagnosing autistic spectrum disorders when they use the DSM iv criteria (no idea why, in the USA they appear to use PDD-NOS for difficulties: miscellaneous)

For professionals who youve found good in every way except for rigid asd-traits-but-not-what-we're-used-to stuff, the more Europe-friendly ICD 10 classification has a handy category of 'atypical autism'.... worth presenting to the old Camhs before making a final decision to switch?

Maria I'm just not sure I want Ds1 to be under their care now as they will not treat him with the same due care and attention. yes they'll help us but on the basis it is other intrinsic difficulties and i fear this will not get the results.
Yes, I thought he may always get the PDD-NOS and was quite shocked when he got nothing at all. Going for the 2nd opinion is probably for the best. We are still going to the old CAMHS for a treatment programme and I just have to get on with it but I am quite upset about going back there at all.

There is absolutely no way the psychologist will change her mind; she made it perfectly clear. she does say it is an opinion based dx and it's such a shame she doesn't value her colleagues opinion.

I do try not to worry about the food Swan but he gets severe constipation and it's awful for him. That's why it concerns me more i think.

Politics, politics, absolutely: couldn't agree more! it smacks of funding issues. i naively assumed they would accept their own colleagues opinion, after all she is credible but it isn't to be. I think you're right; i think people either have to be very open minded or live with someone with AS to be able to understand.