Got psychiatrist appointment in 1 hour

[coff33pot]

DS appt day has finally arrived

Dont know if I will get a dx today or not. Camhs did say this was the final one to see and he can dx.

Butterflies in my stomach now. Dont know what to expect. I know there will also be a new camhs woman as original one has gone on another path so not met the psych or this woman yet which makes me edgy just like DS. Hope my nerves dont kick in and I miss things out. Needs some mumsnet luck lol

My DS1 was four when dx with autism by seven he understood relationship and emotions, however this was not natural and as a teenager it is still not. He has a few good school friends but that is it school friends, if they knock on the front door you would swear ds had never met them in his life. Luckily for him they somehow get him. My DS adapts to what situation he is in but this does mentally and physically exhaust him.

Hiya cof33

It's not right to belittle a client's complex problems because the system doesn't give you time to hear the full story and make a proper assessment. Some CAMHS are especially prone to this error if school says 'there's nothing wrong and the family are imagining things'. They usually see sense eventually but it's hugely frustating.

You can certainly get a private opinion: it will be taken seriously provided it's from any qualified paediatrician or child psychiatrist. To ensure CAMHS just roll over immediately and accept it without any further thought on their part, ideally see someone who has a large NHS caseload and is well-known locally.

Or ask your GP about an nhs second opinion eg great ormond street social communication disorder clinic(it specialises in intelligent, complex asd children who local camhs are struggling to diagnose).

Squidworth that is exactly it. Emotion wise he can pick out sad, happy, mad from pictures so he can relate that way but he FEELS no emotion iyswim. DD hurt herself and was crying so he knew because of tears that she was upset his answer was oh dear never mind can we play now? Or if I say "DS I am sad that you misbehaved or if something has broken and I have said now I am getting angry his answer would be "yes but I cant find my toy or yes but whats for tea" Hamster died sister upset....him? Awesome can I have a look! whats wrong with you sis?

justa I have told dh that I am considering the option of going private and have told him I got to raise £800 plus rail fare to London. There is nothing down here where I live to its Big City I would have to go. Thanks for the link maria I am going to have a good read in a sec :) Once I have the money I am booking private for my own peace of mind. (anyone want to buy any broken furniture )

Saw the SALT and I have to say I am impressed so far. He scores highly on intelligence and undertstanding. Verbally he had no problems but his words are big and doubt he understands the context or meaning of them and just talks for the sake of talking. She hadnt had time to give correct score but said she is satisfied that he understands. In the same breath she said he is extremely fidgity during school time and was so with her and as the morning progressed she could see him change from compliant to agitated and the need to get out so much so that she actually felt the vibes and that she was also becoming agitated with him as if his senses were rubbing off on her! She also said his social skills are extremely lacking and she is coming back to observe him in the classroom and playground (school didnt allow for this today for some reason

I discussed with her this letter and her answer was he cant diagnose without EVERYONES assessments including hers she showed me her diagnostic criteria for autism and went down them with me one by one and as far as she is concerned he is ticking one and sometimes two boxes in each of the sections in eye contact, concentration, anxiety, communication, social skills, one track convos, over the top imagination/non reality. She put her hand on my arm and said quiety that I am not barking up the wrong tree so that at least made me feel I am not seeing things for the sake of it. She is also going to get hold of OT as the idea of waiting for a parent workshop, then further meets, then assessment THEN maybe actually getting them into school is rediculous as he needs help now. School actually said they are struggling with him to comply to do anything now (gobsmacked they addmitted it!)

Again she said she cant understand how the school had not referred him before and also unusual that the LA have not requested a report from her either in that I am supposed to hear next week if he is getting his statement. She is going to contact camhs too. Maybe just maybe I have someone on my side here that doesnt just see him as strong willed and naughty :)

coff33pot

I think you are very wise to go private here. What part of the country are you in?.

Your experience has further confirmed my already low opinion of CAMHS; they do have their place but ASD is patently not their area of expertise.

Keep us posted with regards to the Statement; if it is refused you must appeal their crass decision as a matter of course.

Never forget that you are your child's best - and only - advocate. Keep fighting for him; this is because no-one else actually will.

Attilla Its been a long road to realise that the only one that will help my son is me. You meet brick wall after brick wall dont you? The bleating on about early intervention is important is rubbish as nothing happens early enough!

I have been looking at the link Maria kindly passed on. It does say a GP can refer for a second opinion but it will only be accepted if camhs agree. I am wondering if I should wait for the SALT report and OT report before going to GP so that I have all the facts before me.

That said I am still saving for private regardless.

Atilla I am in Cornwall...............which is very lacking in services or help let alone proffesionals.

My son was about 9 (year 4) the last time he saw the paed, like you a lot of the profs were questioning him having autism. The paed compared his improvement to that of learning a foreign language while he may sound and act like a local to him he will never be fluent, he will never truly understand the language or the culture he can just pull off a convincing accent.

So what you are saying in a way squidworth is that they learn to act through life just coming out with self taught auto responses in a way.

If SLT report will come soon it's worth waiting for. OT may be a long while coming. There are brand new guidelines from NICE here which all NHS staff are meant to keep up to date with and follow... but in fairness they've only been out for 2 weeks so be kind if people look blank

Extract for you:
'If any of the following apply after assessment, consider a second opinion (including referral to a specialised tertiary autism team if necessary):
-continued uncertainty about the diagnosis
-disagreement about the diagnosis within the autism team
-disagreement with parents or carers or, if appropriate, the child
-a lack of local access to particular skills and competencies needed to reach a diagnosis in a child or young person who has a complex coexisting condition, such as a severe sensory or motor impairment or mental health problem
-a lack of response as expected to any therapeutic interventions'

Hi - Sorry you are having such a hard time - Glad someone seems to be on your side- I would certainly wait for the SALT report as it's best to have these things in writing !

Thanks again for the info maria! Yes intothewest I will wait for the SALT. She only has to assess him in class and out at play then the report will be done so will see where I go from there. Thanks all for your support and info its much appreciated :)

Hi Coff33pot,
Your instincts for your own son are much more accurate that a professional's guesses, which is what the report is. I am utterly appalled at the treatment that you have been given and the lack of support for your son. It is a travesty and it must be harder to deal with CAMHS than your son's difficulties. We are going through similar difficulties with CAMHS. The people meant to be your support actually make your life much harder. It's not fair.

SOTIRIA If you are having the same difficulties with camhs then my heart truly goes out to you right now.

What angers me most is the last bit quoted of You have already made a good start with this and continued progress in this area will lead to positive results for DS.

The only reason I have 'made a good start' is through actually coming on this board a few months back late at night and in a mess as to what to do. I knew there was something wrong but was half admitting and half denying. I think Peachy was one of the ppl that gave me good sound support and that I have never forgotten. I have only done well with DS with hours of research on strategies and understanding of the individual traits to deal with. On top of this I have read some really good advice on this board from the more experienced. Some are working very well but I am only helping him with the outer shell so to speak as I dont fully know how complex he is and some things work for one thing but aggravate another.

Its great to have this board but a real sad eye opener that if it wasnt for this board and the mums on it I and DS would still be at ground zero.

And yes one of DS meltdowns is pussycat stuff compared to the frustrations of these people!

I really wish that everything gets sorted for you soon :)

I have asked for a 2nd opinion from CAMHS and I'm hoping that their verbal promise of a Dx will be turned into a written one tomorrow. My friend found that they only offered her DD support after she'd made a formal complaint. It's not us that's crazy or dysfunctional, it's the system.

Good luck for tomorrow please let me know how you get on :)

Please tread very very carefully with CAMHS. I have been through the process and finally got out. Have taken 6 months to get copies of their records, it has taken so many letters, phone calls, help from solicitors and ICO to get where we are now.

Anything that proved they were lying was being with held under 3rd party ruling (which it was not) or had not printed by accident. Even now I have not managed to get any notes from phone calls or internal meetings.

All correspondence they sent us at the time was fairly harmless compared to what they were actually documenting. We taped the meetings and home visits as we were suspicious and now have a record of the total lies but still dont think I can fight this. It has still left me with no trust in anyone as this was a whole team not just an individual.

Most of the lies are so incredible such as my not feeding my DS being assessed due to my hatred of him due to getting ill in pregnancy. If he was starved no idea why he never touched his school dinners and why he was above average weight for height. They had documented child protection concerns for this but obviously never ever mentioned it to my husband or me. Also my husband is home for all meals as he works from home so would presumably have been aware of me doing this. Never worked out why they thought I hated him when I was pushing for help and he was so obviously not neglected with amazing vocab and general knowledge.

Another classic was their documenting that they suggested I invite some family/friends to our house to help his socialisation and stated in quote marks that I said I would never do that. In fact i had recorded lengthy conversations stating that most of the children in his class had been invited to our house to play, some had come once but not one had ever invited him back and that we had invited whole year to his party. I had also explained that we have friends over virtually every day, mine or his siblings and he is used to lots of social interaction.

I had mentioned my DS was scared of tv (when he started school the only programme he was not scared of was teletubbies). I tried hard to get him to watch appropriate tv to try to get him to fit it (I was naive then and thought I could change him). When they watched a programme at school he cried. It was documented that he was scared because I had never allowed him to watch tv.

The records went on and on like that but did have huge contradictions too ie the page after stating I starved him recorded a phone call with health visitor stating I was giving him his bowel problems and she had witnessed me feed him a whole fruit bowl.

I still think about it all the time and just cant make sense of it. My husband appears to just accept that they had to find something to justify their existence and could not say no issues but I have a strong sense of justice and just cant believe professionals would lie like this.

I would advise extreme caution and perhaps ask to be sent minutes of the meetings after each meeting.

oh my gosh That must be truly awful.

They have up till now sent me copies of each report after assessment/school visit and now this final letter from the psychiatrist which is worth nothing other than a get on with it sort of letter.

DS was referred to the salt by the original woman from camhs. She was lovely and was very much aghast at what school had been doing.

If after she has phoned camhs and there is something dodgy going on I will sense it the next time I see the salt as she has such an open face and to be honest her actions for DS would be totally different so I will smell a rat so to speak.

I am at stalemate at the moment till I get salts written report and I really need her to harrass the OT side to get them moving too. I need more on paper before I move for a second opinion I think. And I am saving for private just incase so I am covering all angles. Its the waiting game that is the problem tick tick tick

I attended CAMHS with a friend to support her and they told her there was nothing wrong with her child it was just the parenting. I have seen this mum dealing superbly with her dc meltdowns and I know that they are wrong. Why do they insist on blaming parenting rather than believing us? I am going back next week for feedback. I hope that your wait for the written feedback is not too frustrating and that you get somewhere with SALT and OT. I believe that our children will do well in the end because a child's best asset is a parent who will never give up on them.

So sorry to hear people are having difficulties with Camhs. I have to say that our experience was the opposite: we couldn't get them to take us on despite admitting we were having huge difficulties and finding our strategies weren't helping ds1.

They listened carefully, said we'd done the parenting courses already and they couldn't add anything we hadn't tried. mind you, it was the paediatrician who made the diagnosis and I think as soon as asd is confirmed Camhs Ry to get shot of you

Well I got to make my mind up. I got a letter with an appointment for Monday with the CMH Nurse. The one who was in the room that replaced my original (good one :()

Letter doesnt say what about. But it is also for DS and I am loathe to take him to another meeting talking about him to get him upset again. There is only so many times you want to put your child through that and I am still raw with the stupid comment of the hair cut! Also I would have to go on my own too and that never bodes well let alone drive with DS in the back upset.

I have since worked out where they think its just strong will and I should just let him get on with it when I take him to different places or change his routine. As I got his statement through today ( which is lovely but needs picking at but thats another thread) In it was a report from the Behavioural Therapist (another idiot) Who initially assessed DS for bad behaviour, put things in place as in punishments and wondered why the shit hit the fan. total retraction of his strategies I might add. In it he stated that, DS doesnt get invited to play in other ppls houses, I am going to TRY swimming or another club and I am going to try to get him to school on time so I can meet other children?? So based on that I look like I take my son nowhere which is not the case at all. He has one friend and he only likes one friend, he goes beach (admittedly early evening when not many are around) so he sees other people, he cant stand crowds so I go to park towards end of day too when there are just one or two around to practice social skills on. He goes Beavers (they are great) Also put in there that he was in nursery for long hours when he was small because I worked (god forbid I worked when my child needed me!!) He hates clothes and its a fight to put them on, he hates the sound of the school bell and hits the deck, he hates the hussle of mornings and so will drag his heels getting ready. And he has to walk, balance on something, look for a certain post balance on the other path side and only that side before he is calm enough to walk in the door. So they have portrayed a lonely child with no chance of socialising and no mother around to implement home structure. I COULD SERIOUSLY THUMP HIM as this has clouded what is actually wrong with DS.

Oh and he doesnt go to play in other peoples houses because he locks himself in their bathrooms! or if upset will charge to a strangers house and lock himself in their bathrooms as he cant even remember he is only for doors away. He does go to ppls houses with me to learn skills but that doesnt get put down does it