Q - about autism - how long to wait for multi-disciplinary team appt??

[JAKEJEM]

Hi, have posted on here a few times before and you have all been so helpful, DS aged 3 has seen to paed's who have both provisionally said he is ASD and we are now to wait for an appointment for him to see a team of SALT, OT, social worker etc to assess him for formal diagnosis, just wondering how long you all had to wait for this appointment, we are in Northern Ireland and just wondered if it is worthing going down the private road too. Thanks for your help.

For both boys there was a gap of about 3 months between the Paed appt and the multidisciplinary assessment. I'm in England though so not sure how helpful this is to you.

How are you feeling Jakejam? I know the other NI MNers will be interested in your seeing Paed. We didn't have multi-disciplinary in our day so I'm afraid I don't know.

Hi Davros, we are absolutely devastated, although strangely relieved also, as we knew something has not been quite right for a while. It still hurts like hell though and I have been very very down over the last week, but seem to be picking up now after a visit from my mum (we are military and in Northern Ireland at present), a course of antibiotics from GP (had cold, cough etc etc) and a huge boquet of flowers from hubby) Is it usual that the Paeds don't give firm diagnosis and refer you to the team, hubby has glimmer of hope that she was not sure - but I am sure she is right.

So sorry, Jakejem.

Here it's usual for the Paed to say "I think it's X but you will still need to see the multi-disciplinary team."

JakeJem

I too am from Northern Ireland but am still waiting to see community Paed. - requested assessment in Feb. this year and was told there is a 12 month waiting list - since this I have found out that the community paed. for our area retired and is not yet replaced so the waiting list is now 14-18 months and will keep growing until they get a replacement. I too asked about going private and was told that the other paed. in Northern Ireland do not do private work?? Do you mind me asking who was the community paed. that you seen cause I would phone them and ask about the private work myself - our DS is was 5 in Feb. and is having terrible trouble at school and we really need to get him some help before the school label him as a naughty boy - that is if it is not too late!!!

I do know the SALT, OT etc do private work in Northern Ireland but if you are going to need the whole team it could end up being costly - did your paed. not give you any indication of how long it should be - even ask who you are referred to and phone then and ask how long the waiting list is.

Sorry I cannot be of more help and I really hope that you get something sorted soon, BTW what DX did you get ? was it just ASD I thought they had to give a more specific dx?? if you do not mind I would love to hear what paed. you seen.

Hello jakejam - we've recently had a dx by the paed but it was a long winded process having been originally referred end of last Summer! We've seen the usual SALT, EP etc and Paed twice before final Dx. It is a hard thing to deal with especially when you are in limbo being told potential not actual - all the best jakejam

Thanks for all your messages, Cosmo, we were seen by the CDC in Antrim, HV faxed it through as an urgent case as DS is regressing by the day and our 1 year old DD is starting to suffer too. I'm sorry to hear that you are on a long waiting list, what area are you from? TBH I think the Paed's who saw him were pretty shocked that he hadn't been brought to their attention before. Straight away they went down the autism route so I asked them for their opinion outright and they said he has a lot of autistic traits.

Jakejem, sorry didn't get back to this. Sorry to hear you are so upset but, of course, its no wonder It is good to know what you're dealing with though. I hope your experience can help some of the other MNers in NI.

Thanks a lot Davros and to all of you that have helped me on here in the past. At least we can now get help for our little boy and move forward now we know what we are dealing with. It has been so helpful to be able to chat to other people on here who know what we are going through. X

JakeJem - we are in the newry and mourne area - who apparently have a very good team but it is just getting that initial assesssment we are finding difficult - I spoke to GP the other day who is going to get the HV onto it and see if we can see anyone else just for advice etc... BTW there was an artical in our local paper yesterday from out local MP who is complaining to the health trust about the absence of a community paed. so maybe that will quicken up getting someone in but they will still have the long waiting list but at least it will be a start. I am waiting to hear from my HV if she doesn't phone me by the end of today I will give her another ring.

I hope you get seen soon and things start improving soon.

Take care

Cosmo, don't know if it would be any help but to speed things up further (even after HV faxed us through as urgent) I took a case file that I had made up of my son to our local GP - it has all the things in it about why we were finding it so difficult to lead normal lives due to our sons "behaviour" and how it was affecting our 1 yr old DD. He took one read of it and rang the CDC there and then and told them to see my son NOW!!! Just wondered if it was possible for you to do this - it may help????? XX