Well - saw CAHMS today for the first time - you lot might be chucking me out

[hereidrawtheline]

Hiya we saw CAHMS today for the first time. The man was a child psychologist I think. We were there about an hour and a half.

He hasnt said anything concrete yet he said he wants to see DS some more for various sessions before he commits himself BUT he does not think DS has any SN.

He thinks - ready yourselves - he thinks it is all pretty much down to attachment issues. Between me and DS. He agrees there is a lot of anxiety, control, tantrums etc but he thinks it all likely stems from attachment anxiety and birth trauma. Even things like using his fist to feed himself he said could indicate that because it is more like human contact i.e. me. Anxiety etc is stemming from a traumatic birth, such as him absorbing in infancy that he hurt me. And then I had PND. And he suspects it is all anxiety and attachment problems. Also of course because he now just wants to sleep with me in my bed naked. And when he was a baby he would only ever sleep on mine or DH's chest he was never able to lie in a bed he screamed blue murder. And his comfort item is my tshirt that he's had since he was a few weeks old. And so on and so on.

He did say he isnt ruling out definitely anything like Aspergers just yet but he is not that way inclined. It was attachment attachment attachment.

So... I dont know. I feel really strange. Some of it makes sense I mean I know he and I are extremely close to each other and of course I well remember the issues he had as a baby and the birth and how much he wants me now, pretty much exclusively. I said to him I didnt think that would account for all the meltdowns but he said it might but we will look into it more. Of course some part of this reinforces my feeling it is actually my fault.

He wants to see DS several times starting some time in July for sessions where he plays and talks more with him.

So... what do you think.

[brandy77]

Did anyone read that article in the Sun yesterday about the 10 year old with attachment disorder, truly horrific reading, poor family but also poor boy as social services dont appear to be helping at all from their comment.

This lad was abused/neglected by his bio parents and adopted under age 2, threats to kill family members etc. now that is a fine example of real attachment disorder and not the label that appears to be placed on so many of us by the lovely CAMHS peeps

[hereidrawtheline]

no I didnt read that, sounds awful

[minxofmancunia]

I work as a senior nurse therapist in CAMHS and have worked in this field for 8 years, in-patient CAMHS, forensic, as a lecturer and CAMHS and now in tier 3 community CAMHS.

I'm sorry to hear of all your negative experiences. I'm sure there are differences between teams. FWIW it sounds like the psychologist you saw is taking his time and trying to formulate carefully. it might be worth giving it a go. Separation anxiety sounds plausible based on what you've said and workable with IME, I get lots of referrals for this.

As for the word "attachment" it doesn't neccessarily mean "attachment disorder" and googling was not the right thing to do. Try the royal college of psychiatrists website (google this) for their parent information leaflets. Young Minds charity has some good stuff also.

From the other side of the fence to those of you who've been so vitriolic in attacking highly trained professionals I'll let you know how it can be for us.

We endeavour and try to develop a strong therapeutic alliance with families, most of the time this works but sometimes not as there are disagreements.

Parents have often self educated via google and the school gates about what they think their childs "condition" is. Sometime they're right it is ASD/ADHD/tourettes. Sometimes it's not, we get bullied, harrassed, shouted at and threatened to agree with their home made diagnosis session afer session. this includes slagging us off to other professionals including teachers/GPs who then get on the phone and harangue/harrass.

We get inundated with requests for "anger management" for children who come form disruptive, angry environments. If as the NICE guidelines recommened we suggest Webster-Stratton parenting courses we get abuse hurled at us and told to "fix" them.

Remaining calm and empathic is sometimes hard but we try to do it because it's our job. Sometimes when children are school refusing teachers and parents expect us to wave a magic wand and miraculously fix this. I've been blamed for a parent getting fined as I didn't "sort out" her son as quickly as she would have liked.

And trying to be helpful here re ASD dx usually our ASD team only look at referrals that have had a full paediatric assessment and SALT assessment done. Then we take a full developmental history which takes 3 separate hour long appiontments, then we do a school obs and an ADOS. Then we wrire recommendations and look at post diagnostic stuff with the families.

I really hope you get the outcome you're looking for for you and your sone and the assessment proves fruitful and helpful for all of you. I don't think he sounds "mad" or "far fetched" but if you really find what he says contentious then ask for another professional this should always be faciltated.

Good luck

[minxofmancunia]

in my last sentence I meant I don't think the psychologist sounds mad or far fetched of course your little boy isn't. Typing quickly and rubbish at it so apols for mistake.

[debs40]

I think your post is really interesting minxofmancunia. I can see precisely what you mean about the pressures with which you work.

I suppose referrals can come from alsorts of sources. However, when they come from parents, via GPs and paediatrician's, they have often been the result of long periods of soul searching and worrying about whether something is not 'right' wiht their child. Then, to have to decide to raise these concerns in public with health care professionals, well that almost feels like you're betraying your child's confidence sometimes.

Parents do it, I assume in most cases, because they feel that their child's distress (sensory or otherwise)might be relieved if they take action. Health care professionals are human and not all are good communicators (despite the nature of the work) and this means that sometimes parents are left angry or upset when the conclusion of their efforts appears to be a suggestion that the problem and answer lies with them.

Now, this may be the true, however, I would imagine that, after one session, it is too early to tell. I set up a birth related charity after my first son was born and I can tell you that when people get clear, unambiguous information, they deal with things much better. No parent should be left feeling confused or angry like this and should always be left with an avenue to feedback or discuss worries in light of the knowledge that meetings like this are very stressful.

It is a shame these thoughts were thrown in with little in the way of context, explanation or a suggestion of 'don't worry and give me a ring later if anything needs talking through again'

[brandy77]

very good post debs40

[brandy77]

very good post debs40

[nikos]

O.K., I wasn't going to get involved in this thread but Minx' post has brought back all the feelings I had with CAMHS. They are the only professionals in my dealings with my ds' dx who were appalling.
For 'highly trained professionals' how about the autism support worker who came to see us and knew nothing that was going on in the area, including what was going on at the big local treatment centre for autism. We had asked for specific information and she printed a booklist from the NAS website. She gave us absolutely nothing.
And the professionals think they have a right to intrude in your life, and yes the feeling was one of trying to blame the parents. It struck me strongly that this must be the atmosphere they work in and minx post has that air about it.
Parents should self educate themselves with the internet and with respect, they know their children best.
I completely withdrew from CAMHS and I have excellent relationships with all the other professionals involved in my sons care. We considered making a complaint but didn't think it would be taken on board and we don't have the spare energy at the moment.

[hereidrawtheline]

Thanks everyone again for your thoughts and input.

I have calmed down from my attachment disorder panic of that night, you are right googling it was a bloody mistake!

I am doing what I said before, waiting to see what happens. I dont have any examples of my own yet of CAHMS being a destructive force, this was the first CAHMS appointment we have ever had and the appointment itself went ok, I was a little bit sceptical of what the doctor was saying but still open minded, and clearly he is correct that DS's attachment/obsession with me is quite remarkable. DS's thing now, for the last several weeks, is holding on to me and rubbing all over me like a cat and licking me. Which I havent encouraged by any means as I know it is "odd" to lick anyone. But neither does it in any way disgust me, I mean I wouldnt let DH lick me (like that ) but with DS it is just one of his strange little ways and I understand he wants to feel me. He mouths & licks lots of things anyway but I am the only person really. Slight waffle there!

Anyway, Minx, I can imagine it is hard dealing with parents, some of whom may even be part of the problem. I really do sympathise with that. And my husband works for the NHS, I know it is often a hard thankless job. But the thing I have found so frustrating is that anyone who knows me at all, knows I truly have nothing but DS's best interests at heart. I am truly his Mama we are very close and I can read him like a weather vane. I wish doctors didnt treat me as if I was "against" them when I am only FOR DS. And I wish they would trust me. I will never ever misrepresent him. I do worry, yes, but when it gets too much a sharp slap puts in proportion. But I just want him well. And he is not happy or stable. That is what I am trying to achieve. The doctors can come across as aggressive as well.

But this is the thing - doctors, nurses, mothers, children, are really just people. So in all places you will get some good and some bad.

[cory]

CAMHS doesn't have to be a destructive force and I for my part have actually found them quite helpful. But I think many parents of children with SN- and that definitely includes me- have had some experience of medical professionals who are either simply poor communicators or who genuinely believe that if they cannot immediately find another diagnosis then the problem must have been caused by the parents. And for parents, it can be incredibly difficult to keep pushing for a second opinion/further investigations with the fear at the back of your mind that you are laying yourself open to Munchausen by proxy allegations.

[hereidrawtheline]

cory you are very right there. That is constantly what I worry about. And although this isnt CAHMS, my GP himself doesnt seem terribly educated about ASD, and he said to me it is all behavioural and discipline related. And I assure you, DS is NOT spoiled. And I fail to see how everything he does can be put down to discipline, I mean... am I supposed to put him in TO when he licks me or cries trying to get the spider off his neck? These are the things that are being included and it just doesnt make sense. And the more I try to explain the more they think "yup, she is determined to get a DX of something serious" when I am not. I just want them to understand what his needs are so we can help him.

[cory]

well, I was supposed to discipline my dd out of having sore joints, so I know how you feel

[minxofmancunia]

I'm realyy sorry the autism support worker wasn't helpful Nikos and wasn'r armed with knowledge she should have been.

FWIW I DON'T think my most has an air of trying to blame the parents about it, we try to get parents on board and look at the whole system not isolate the child as a separate problem whatever their needs are.

Twice on friday I talked to parents about NOT being so hard on themselves and really reinforcing all the strengths and protective factor they had going for them as they were so self critical. That's what we really want to do help families find their strengths in the midst of all the worry and soul searching because most families have lots of them!

Sometimes a parent will be trying their absolute best but will have been in care themselves and have had no decent parenting experiences of their own to call on so we try to build resilience with them. It's NOT blaming or fault finding, it's NOT their fault they're struggling against adversity.

But sometimes, well only ocassionally I'm afraid children's difficulties can be traced directly back to experiences they've had with being parented in a way that's overtly critical, indulgent or neglectful or actively abusive. Even then we look for strengths.

Some of the abuse I've recieved at work I don't think is ever acceptable no matter how distressed a parent is. I'm a parent too, I don't always agree with GPs Hvs etc. but I try to vocalise it respectfully.

FWIW I do understand the fear that parents feel about being labelled with Munchausens, but IME I've only known this label be (correctly) applied twice. It's not bandies around or brought up unless their are grave concerns as we know how damaging it can be.

Also if I'm unsure about something I'll be hones with families, ASD/neuro developmental is NOT my area of expertise, I will always seek advice/refer to a colleague rather than trying to make out I know exactly what I'm talking about. Likewise my colleagues refer to be re children with suspected OCD/psychosis and depression, because that's what I know lots about and have experience in and hopefully I can help.

We ARE "highly trained professionals" and I'll always stand by that. Do you have any idea of the rigours of becoming a child psychologist for example? Since I qualified 10 years ago I've never stopped studying and educating myself and so for people to mock that I'm afraid I do find it a bit insulting.

[minxofmancunia]

heridrawtheline we've just finished the assessment on a little boy who had very similar sensory issues to the ones you describe. The Psychiatrist recommended a sensory profile to be done by an occupational therapist with expertise in this area. The GP can refer him for this directly has this been suggested to you?

[hereidrawtheline]

minx, no that has not been suggested. Nor SALT although he has a speech problem. He has a huge vocab but quite hard to understand, most letters sound similar to most others, and letter combinations are left out. They have said so far "he'll grow out of that likely" but I am not in agreement on that front. He is not improving or self correcting at all and I think he needs help before it is even more deeply ingrained. Also he constantly talks gibberish, his own language. He communicates like that really very well, using body language etc to help him. He must know more words than the average 5 year old but he speaks gibberesh about 50% of the time.

I'm sorry you were upset by the "highly trained" remark that was made. I can see both sides, in that we (I mean me, and DH) have encountered some really hostile people in this whole process of trying to get help for DS. And some have made really insulting comments to us. Our HV came in and after having only met him 10 mins before said he couldnt possibly be autistic as he was talking to us. So this is where I suppose comments like that come from. But I understand it is not fair to all of the health professionals, and would be insulting to you as an individual who is clued up and trying her hardest to do a hard job.

FWIW I would be very grateful if someone with some knowledge, insight, compassion, and qualifications would come along and be a fly on the wall here for a week. Because I have nothing to hide, I know DS is extremely loved and well looked after. But he is not balanced emotionally at all and it is terrible to suffer through it.

We were referred about a year ago now. The hospital lost our referral 3 times and set up an appointment with the wrong doctor a 4th time. So it has been a long hard struggle where we have had to cope entirely on our own with DS who in many ways has deteriorated.

[nikos]

I'm actually stunned how they get jobs pipinjo. And can take the money at the end of the month with a straight face. The worker I've described did a 50 mile round trip (good mileage claim I know) to give us a photocopied piece of paper she could have sent in the post. I learnt more about autism in our area within a week of ds first being sent for assessment than she could tell us.
Right, need to leave this alone now and get angry about things that matter.

[cory]

I fully take your point, minx, and have a lot of respect for CAMHS

at the same time you need to accept that some of us have had totally unjustified accusations made against us by health professionals after insufficient examination; it can happen

in my case, it was not CAMHS but a paedicatric consultant on the children's ward who suggested that dd had been sexually abused on the sole grounds that she was complaining about severe ankle pains without anything showing up in the X-rays (she has a soft tissue disorder)

his reasoning being: no X-ray evidence=no organic cause for pain=psychosomatic disorder=trauma=sexual abuse

I am sure that as a paediatric consultant he was highly trained; that didn't stop him from disengaging his brain on this occasion

if you once have had something like that happen, then you are going to be very wary of pushing for further treatment

which is why I said to the OP that it is a very good sign that her doctor wants to see her ds over a period of time; so he is not making his mind up on a snapshot like mine did

[wasuup3000]

hereidrawtheline

You can self refer your son for a Salt assessment. Goto your PCT website and it should tell you how there. Some areas have drop in clinics-you don't have to go via your GP you can do it.
Think it maybe the same for the OT?

[hereidrawtheline]

thanks for that wasuup I did not know!!! Will do that Monday, that is brilliant. The more opinions the better at this point.

[wasuup3000]

My opinion is that it is possible to have both separation anxiety and ASD.

The think with the nursery rhyme seems to be that your son has taken it literally. That therefore it must relate to him and have happened to him as he cannot grasp other peoples feelings/experiences possibly. Then to be told through the rhyme that miss muffet was scared of the spider, then he assumes that therefore he must be scared of the spider. Therefore the anxious behaviour perhaps because he doesn't completely understand what is said to him, despite being able to use those words (aside from the pronunciation difficulties you mention)?

It would be worth trying a supernanny based routine throughout the day-to have set mealtimes, set playtimes, set going out times. To see if that helps lessen the anxiety. It would need trying for about 6 weeks. Some rules like no TV after 7pm, no drinks after 7pm. If he sleeps well in your bed-can you get a bigger bed? If he feels safer sleeping at first and does it for longer that is more important than where he sleeps. Where he sleeps can be tackled when he sleeps a little better.

With anxiety, small steps are important-make only one tiny change at a time and always tell him this is our routine, this is what we are going to do, these are our house rules. Even if you are not sure if he understands just keep repeating your messages to him. At such a young age a reward chart maybe something to think about.

Pick your battles with him-if he wants a certain cup then thats no big deal for example.

Let him see that you are in control and not him-he may cry, he may scream, he may hit out but he needs to see what you say goes.

Let us know how you get on Monday!

[daisy5678]

I think people have been a bit harsh on minxofmancunia and I can see why she felt the need to defend her profession - I feel it too when all teachers are labelled as mean/ lazy/ whatever.I think that CAMHS workers, like any profession, are made up of a mixture of good, excellent and bad - but we can't generalise about all of them!

HIDTL, I'm sorry that there wasn't more clarity as a result of the appointment, but it's great that the doctor will see ds more and investigate a little deeper.

I think that people slating the psych in this case is a bit OTT. Why would every child with possible SN have a full multi-disciplinary assessment? That can't be the way it works, or the system would collapse. The way it seems to work is that there's an initial appointment, where some initial impressions will be discussed. The guy didn't say no SN. He said that he thinks there's no SN. That's his first impression, just like J's psych's first impression was that he was autistic, but then had to follow that up with months of interviews/ questionnaires and then the ADOS before drawing a final conclusion.

I think it's right not to rush into a wrong dx or even a right dx unless that dx is being withheld for dodgy reasons e.g. politics or funding.

The problem is that CAMHS see a lot of parents who aren't like us. By that I mean that we obviously care about our kids and think about our parenting and put our children first, or we wouldn't be on here! But there are some parents, who I see in work each day and MOMancunia clearly sees too, who want every excuse not to take responsibility (or let their kids take responsibility) for their kids' behaviour. They want an excuse. It sounds very Daily Mail, I know, and I'm sorry, but it is true.

There are other parents who want a dx for other reasons: financial, social services, to fight an exclusion... I didn't believe it until I met them when I began teaching. I thought it was something made up by people who didn't believe in SN or SEN. But it's true (and very sad).

There are other parents who become convinced that (normal) behaviour that their child shows (which is not something that their niece/ neighbour/ other dc did) must be SN, perhaps because of something they've read or heard even.

And so CAMHS have to be careful. A label sticks. When this is the right label, it's good. If not, it's very wrong, especially for the child. CAMHS have to make sure that they investigate carefully. Who are we to dx HIDTL's son? We haven't met him. Most staff at CAMHS are very well trained and experienced, so I am guessing that this doctor (who'd met him) knows more than we do, even if we are experts in ASD in our own rights.

Sometimes being a parent can cloud our judgement and the internet can make us think that we know more about SN than the doctors. IME, the doctors know more than me. I never ever guessed that J was autistic and the psychiatrist spotted it the first time she met him! So how can I say that parents know more than doctors? Well, we definitely know more about our own kids, and about life with SN. But they have to be trusted until there's a reason not to, I think, and I don't get any alarm bells ringing from the description of this appointment. Sounds like he's got a hunch and is going to investigate cautiously and with an open mind.

Good luck, HIDTL, and yes - make that SALT appointment and OT appointment via a GP referral.