What happens now?

[bluefish]

Saw paediatrician who said he no longer needs to see ds. It was the third time we had seen him. First was initial referal second was dx after assesment at cdc and then today for a review. We just chatted a bit about asd I asked a few questions and updated him on statement and progress and that was that. My question is ..is that it then. ds is on the autistic spectrum and we no longer have to see anyone? or will we have to see people through school? I know at his statement reviews we will have meetings but other than that are we to be left alone to resume normallity?

just wondered

[brooke]

Im surprised you've been discharged. My son was dianosed 2yrs ago and i still regularly speak to his pead - if there is a problem and to order his melatonin. We also speak to salt and have regular meetings at school. i would have thought your ds should have a pead but then maybe im just one of the lucky ones Id be interested to know how many other children have a pead.

[bluefish]

Im surprised you've been discharged. My son was dianosed 2yrs ago and i still regularly speak to his pead - if there is a problem and to order his melatonin. We also speak to salt and have regular meetings at school. i would have thought your ds should have a pead but then maybe im just one of the lucky ones Id be interested to know how many other children have a pead.

Thanks brooke for your reply, It feels a bit stange that thats it! I am pleased in a way that we dont have to see anyone but feel very confused. I gained nothing from appointment and It was sort of mentioned that it was just to make sure I understood situation? I know that ds will not be suddenly "cured" but thought they might monitor him for a few years just to see how he develops?I kind of felt It was "your son is autistic, thats not going to change, goodbye" And if we are now under education I am not happy as have no convidence in ep nor the senco who have very limited experience in asd and in senco case has no interest. any suggestions?

[jb1964]

Hi Bluefish,

 

Prior to my daughters diagnosis by CAHMS (at 12yrs) - she was under the Paed. from birth - seeing him every 3-6 months for various things (that we now know were probably due to her ASD). He referred her to CAHMS at 11yrs for a swallowing problem - which resulted in a lengthy CAHMS assessment and therapy for her anxieties but following diagnosis she was discharged because they said that they only follow up for a specific reason - that falls outside ASD as ASD isn't treated (if you know what I mean). She has been seeing the Paed regularly now since October but that's because she's just been diagnosed with epilepsy.

 

Take care,

Jb

[brooke]

Are you able to look at other schools in the area which might be more experienced in SN? Does your son have a statement? My son was in mainstream but they couldnt manage him and he wasnt learning at all so he is now in an additional Resource Centre attached to mainstream.

I think if it was me i would get on the phone to the pead and just clarify what if any help you will recieve. You could also try social services and see if they have a disabilty team that could offer advice. There is also IPSEA: Independent Panel for Special Educational Needs. Voluntary support for special eduction. contact http://www.ipsea.org.uk/

 

Im sorry i dont have much advice for you hopefully someone on here might be able to give you some more info <'>

Edited June 17, 2008 by brooke

[Flora]

This is common I think; they dx, then unless the child is on meds they tend to discharge. My ds was discharged after his first appointment with a new CAMHS when we relocated, and I remember fighting with them to not do this but they did anyway! Within a year he was back there for an emergency appointment. Looking back I'm not sure what I expected them to do but it felt like a safety net and when they discharged it was as if that safety net was taken away.

 

I think it varies from area to area. The CAMHS who dx my boys before we moved, had no intention of discharging him because they wanted to makes sure he had access to intervention when needed. I wonder if things would have been easier on him if we hadn't relocated but that's a different story!

 

Flora x

[gothschild]

Hi,

 

J still sees his paed and has done for 5 years.

This is the second time he has been sent to him though, as he was discharged at 6yrs after suffering from epilepsy since he was 18 months. J's seizures stopped and it was decided that he didn't need any more appointments, a year later and he was back, he isn't on any medication.

If you are worried try having a word with your GP, my doctors are really good and refer J to whoever he needs to see for help. It worth a try!

 

gothschild x

[sueeltringham]

We were discharged from paed following diagnosis. I resisted and resisted and argued and dug my heels in, but was told that unless we had any specific problem then we would be discharged and we would have to go back to GP with any future problems and get another referral. CAMHS and the SLT did the same. So, now if we have a problem we are left to our own devices as it is now more than six months since any of the last appointments. I hate going to the GP and it often takes us a while to realise that something has really become a problem i.e. dealing with the anxiety and panic attacks. I think we deserve much better than this. You can't just diagnose then discard!

 

Sue

[Frangipani]

Is it possible your local Council can put you in touch with a local support group. Hopefully the referral they give you, the person who runs the support group in your area will be able to give you some advice on what other support is available.

 

Fran x