There's your diagnosis Mr and Mrs Blogs

[Sooze2]

Late night ramblings.........feel free to ignore.

 

So, we have the diagnosis. We went to a meeting at CHAMS last week and she said "oh you havn't brought him with you" she told us not to bring him in the letter! We said that in the letter we were going to discuss treatment but we didn't want meds for his ADHD yet but wanted to see how he settles back into school first, she seemed unaware of what was in the letter! She gave me some leaflets about what books to buy and a contact number of a support group and then basically said she won't be seeing us again unless he becomes totally unmanageable and then she will try him on some meds. She said I had obviousely done a lot of reading about it all so we are coping fine which we are but because of this are we now deemed not to need any follow up appointments and support?

 

Looks like we are now on our own.

 

Ive phoned the support group organiser and emailed her, she emailed back to say she'll be in touch but hasn't been. The school are saying how good he is being but I don't know what they are doing with him or how they are helping him. Autism Outreach are coming in on Monday, she may have time to see him and may be able to speek to me but then again she may not! WTF!!!

 

Surely now is the time we need guidance and support, I have faught for him for a long time and we are pleased things are now being recognised, I have started to try and focus on other things rather than my thoughts being constantly on him. I have this kind of surreal thing going on, Ive been caught up in the living nightmare in trying to get people to listen to me for a few years and now that they have they seem to be saying "OK Mrs, youve got what you wanted now ###### off" Its probably all in my mind though but its a strange feeling.

[jb1964]

Hi Sooze,

 

I think unfortunately what you say is quite the norm - our daughter was diagnosed at 11/12yrs old and we were told pretty much the same - CAHMS said that although they can offer support and help - they do not have specific ASD help units - they only try to determine the reason for behaviour and that ASD is something that they have forever and cannot be 'treated' so to speak. Obviously they can refer for specific help in OT or SALT although our daughter was referred to SALT when she was diagnosed (and she's now 15 and we've still not received any appointment!!) - so I think even that support depends on your local authority - and as for educational help, that too seems to depend a lot on the school and their support/help/advice etc - otherwise it's fend for yourself and more often than not by the time you find it out it's way too late.................

 

They also said that they would only see her for specific reasons i.e. if her eating became a severe problem again (that was why she was referred) or that her obsessions etc had reached a point that they were taking over her life. As for her depression, lack of sleep, aggression and self-harm - that was all part and parcel of her ASD - sorry and all that!

 

Their parting words were that we were by far more the expert in our daughter than they were and it will all be trial and error trying different strategies for the different things that happen/change over the years.

 

Hope you get better support where you are,

 

Take care,

Jb

Edited September 19, 2008 by jb1964

[jb1964]

Oops again - don't know why all my posts seem to be duplicated tonight!!

 

Jb

Edited September 19, 2008 by jb1964

[allsetuk]

same here, my son got diagnosis when he was 4 and since then we were just left to deal with it, took me 18 months to get in to see CAHMS.

after diagnosis i was sent a reading list and discharged , every time ive tried to engage them in dialogue they have said my son is progressing as expected and

thats that.

Other than that not one iota of help , the physchologist said to ring him when my son realises he is wierd but for now he isnt "bad enough " to be seen and I should be glad he isnt coming at me with a knife !!!!

 

Six months ago I contacted social services for help, so far ive been completly ignored despite repeated requests.

 

shocking the whole thing is shocking

Im appaulled by it all

[lisa35]

hi,ditto

autism outreach truly saved our sanity, the particular person we have is fantastic

and I was amazed by what the name"autism" opened up to us

But thats considering we d coped with his behaviour on our own for 12 and half years

We almost resented any advice because we d fought so hard and struggled if that makes sense?

Ask if theres a cygnet group running, Im not sure if thats specific to our area, but is a six week course, looks at asd and manging things.

cahms useless. I have no confidence in them at all. they say asds arent "mental" health, but its neurological condition,yet they diagnose!? Bu t then say cant help more cos its not mental health!!!!!!!

see if you can have referral to occupational therapy-they cn help with organisation, school,etc, -Id ring the local hospital before you ask for referral and see what they have, before your gp could fob you off.

it really seems to be what ever you want you have to go out and get....

tt this time last year we had no formal diagnosis, and the last year has been battle after battle

we got diagnosis in april-aspergers, now have statement, he needs specialsit provision in a school with asd unit

we re just waiting for the wranglings between the school and lea to see if they lll agree-they want extra funding as there are no places.

 

so it never stops! Feel autismed out, but if we dont give it %100 now the consequences are to great for our kids

go out and annoy, harrass, get what your kids need!

xxxx

[Flora]

Hi Sooze,

 

I think I was one of the few people I know this didn't happen to. When my boys were dx (within a short time of each other as they were assessed at the same time) the consultant was lovely and we had about 3 follow up appointments (including one specifically for after I'd told Bill about his dx). I think there would have even been more but then I relocated down south. When I moved I asked for referral to CAMHS expecting more of the same, but after the first appointment (which we waited a long time for) they basically told me unless meds were needed they wouldn't remain involved. I was horrified but when I joined this forum it became apparent that this is quite common.

 

Flora

[baddad]

Hi all -

 

I've moved this to general discussion at Sooze2's request, as it seemed more appropriate here than education.

 

Sooze - generally, I think, your experience is often the case. CAMHS or a local paediatrician do the dx, but then it's left to the parents to find their own support networks, and to bash out all the other details (LEA etc) with the school/ed-psych/S&LT people themselves. Now you have the dx you are much more empowered to do exactly that, and CAMHS report will give you a basis for discussion and access to provision, but the nitty gritty's of support are all going to arise from recognising what's needed with the agencies who should be delivering it and then getting them to do so.

 

Hope that's helpful

 

[pearl]

It amazes me that things have changed so little in the 14 years since JP was dx'd.

It was just the same for us, we said, so what happens now, will you follow him up or anything? Oh no, they said, not unless we want to do any research. In other words, if it would help them. We were left with absolutely nothing - not even a leaflet to read.

All our help came via the educational route rather than the medical.

[LizK]

This sadly is getting increasingly common. Health services anywayare not set up to manage autism, deferring it to education but recent Government changes in how secondary care is funded 'Payment By Results' means that a hospital trust earns money by seeing lots of new patients. Patients requiring long term care generate less income so there is now a LOT of pressure on clinicians to see, diagnose and discharge patents. Children like ours are failed by this system

 

We do still see a paediatrician six monthly as my son needs melatonin which can only be prescribed by secondary care. Paed is lovely, I moan to him for 20 mins but aside from a few words of sympathy and a prescription he doesn't actually do anything. There are no social skills groups, no parent groups, no behavioural support teams for kids like mine. We get most help and support from Autism Outreach who actually are far more skilled at managing autism. Hopefully your diagnosis wil be abel to help you access these sort of services to help you

 

Lx

[Diane]

I have been reading this thread and it upsets me that a lot of you are not getting the support and guidance you need.

 

My own experience has been positive and I feel that I have been incredibly lucky compared with your experiences.

 

We started attending CAMHS with our son in January O7. Our son was diagnosed in Oct 07. He was referred to the Inclusive Resource (outreach worker) The LEA refused but he was accepted on a second referral in Feb o8 and inclusive resource said they could not believe he was refused the first time round. CAMHS wanted to sign our son off but they agreed to give me support by phone and meet with my sons clinical psychologist if it was necessary. CAMHS started to see my son again in March of this year and this will continue until inclusive resource agree that it is nologer necessary but I know I will still have access to his psychologist if I need it.

 

I am also aware that my son would not be doing as well as he is if it were not for the input from these two agencies. Unfortunately despite all this help and support school are still yet to get it right. We are having a meeting with them on Wednesday to see if we can push them forward with what needs to be done.

 

Accepting all this support was difficult at first as for 12 years (he is 14 now) I met his needs on my own and to suddenly have people telling me what to do made me feel that I had been failing my son. Which was not the case. I now accept the help with open arms and I know how lucky I am to be getting it. To be honest it has made such a huge difference to our lives I do not want it to stop. I will feel lost without it. Even with help life is still difficult as I am the one who has to deliver and make work what is advised. I know that if it goes pear shaped that I have people to help me pick up the pieces and make some sense of it all.

 

I feel really sorry for those of you who get very little and I think this postcode lottery of what is on offer is dreadful and not just for those who are affected by ASD but right across the NHS. I think this could turn into a soap box moment so I will stop.

 

Keep fighting. It is the only way.