What would you do?

[claw3]

Ds is due to receive his dx on 23rd June, after previously being observed and history taken and a verbal dx of ASD being given.

ASD service are still insisting that school be present and if school are not present the process will be halted.

Due to school sticking their oar in and informing anyone who will listen that ds doesnt have ASD and basically has no difficulties, i do not want them present.

I have expressed my wishes and explained the situation to ASD service and they are still insisting that school be present and stating 'they have dealt with schools like this before'

I feel like telling them to stick their dx, but im currently in the process of statutory assessment and dx is important. If i refuse school being present and process is halted, i would then have to make a complaint etc, etc.

I have sought advise from IPSEA and NAS and they are saying just go along with it.

I have pointed out that this is a private and confidential medical meeting and the findings of their assessments should be disclosed to me first and then i should decide who i want to disclose this info to. On a more personal level, i do not wish to share this emotional moment with strangers who have been totally unsupportive.

What would you do call their bluff or go along with it?

If your ASD team is anything like ours they get quite a kick out of kicking the arse of schools who fail to comply so I would go with the ASD guys.

However, I would have a caveat that if anything comes up that you feel is private, or school is delibearately obstructive to an x degree, you can either ask them to leave opr postpone the meeting.

At best I would guess the school would just send the SENCO & I bet they loose all their confidence in challenging the dx in a room full of far more qualified profs.
In any case the DR's won't like their DX challenged & I'm sure will put them in their place.

You never know you may actually enjoy watching them squirm

I can see exactly why you would not want them there, I would feel very uncomfortable in your situation - but is there a possibility that faced with a room full of people telling them otherwise, school will have to accept the opinion of the experts??
Mind you, what does the NAS suggested pathway to diagnosis say? In our case (supportive) school head went, but as all other professionals pulled out (another story, not to be gone into here!) apart from paed the meeting did not go ahead in the format expected. We were not included as parents in that meeting anyway. Why can they not all meet together and then present the dx to you privately?

oops, in time it took me to write anything others have said similar - I must get quicker at this!

Thats a very good point, thanks.

I suppose im so used to professionals turning on me, after speaking with school, where they would just rather takes school word for it,than bother to read reports supplied by other professionals, i am afraid its my arse that they are planning on kicking!

I was looking at this meeting as being a bit of a relief, if that makes sense. A conclusion after all these years. Now panicking that school have managed to convince them, i shouldnt be taken seriously.

Especially as school seemed obsessed with the fact that ds doesnt have a dx yet.

God, that's a really tricky one.

I completely agree with you that you don't want unsupportive strangers in the appt at dx.

BUT, you do need this dx.

agree with the caveat - do you have a friend/relative who can be there to say "oh, I think claw needs privacy at this point" - might sound better coming form a third party there to look out for your interests?

If you do go ahead and let them in, make sure you write a blistering complaint afterwards to everyone you canthink of - it is disgusting that you are being pressured ot let strangers in to a confidential medical appt - complete violation of all your (and your ds') rights.

I'd go with it, get the dx and use it for the statement.. You have a verbal already, so if school insist that there areno problems they are not going to hold credibilty with proffesionals there.
If they say dc has no issues, pick a really stand out one.. And say oh I though x was related to the difficulties he displays on a regular basis.. " turn to proffesional " as we have discussed prior to this meeting".

Mind that is just me and how I would do it.

Anon, that is exactly why i feel school will be there to challenge the dx.

The original appointment was changed from me attending (with school) without ds, to now observing ds from 9.30 - 10.30, the 10.30 meeting with me. Apparently so 'everyone' can observe his behaviour. Why?

Silver, I thought i knew what they were going to say and had tried to prepare myself for i knew what they were going to say, now im having to prepare myself for something quite different. What if the purpose of school being present is to tell me no dx based on schools 'evidence'?

How much weight does a verbal dx carry, i assume they can change their mind?

I don'tknow, I'm sorry.

My dx process was different (in fact, i only have a report saying dd1 "fulfils all the criteria for an ASD" which ahs always left me a bit paranoid - it doesn't actually say she HAS an ASD, iyswim?

my dx appt was me, paed and SALT at the social * communicatin disorder clinic. I didn't know it was a dx appt, just thought it was another pointless round of jumping through hoops.

all the different processes around the country only serve to add to the confusion, if you ask me.

Amper, NAS stated different areas do it differently and are only guidelines. So not much help to me really.

Perhaps it is so that they can point out ASD traits as they can see them, to the school, Claw? Then the school will be more informed?

Claw - Sorry about that - should have checked myself first, running between DS1 (NT) who has high temp, and DS2, just in middle of his anxiety-ridden going to bed thing. Keep escaping back here when I can.
I do wish there was a consistent country-wide process for all this, I really don't understand why there cannot be. Until I found MN I assumed I was just a mad mum stuck in an unusually bad county for these things. My eyes have been well and truly opened

Thearsenic, i will have no problem with challenging what school say etc, i was hoping this meeting would be about giving a dx, not another arguement with school, im sick to death of disagreements with school.

Still i suppose i will have to prepare for it and worse case scenario get a 2nd opinion.

Why would the process have to be halted if school are not present?

None of it makes sense.

Lou, i hope they wouldnt be pointing out his behaviour in front of him, like he is a performing monkey. It would take a lot more than someone pointing out asd traits to make this school informed!

I suppose im just struggling with whether their intentions are good or whether there is something more 'sinister' going on.

Im probably being paranoid [nutty woman smiley]

Claw - sorry, I don't know what I thought the observation would be, I imagined some sort of observation room, so that he would be with someone, and others looking on, so not in the actual room, IYSWIM.

I still think that if there is one time frame of observation that everyone has seen, then it makes it much easier for the profs to say to the school - look, what you were seeing were x, y, z asd traits.

Best case scenario - they give you a dx, and explain to school why they gave him the dx and what the school should have noticed and you then pipe up 'will he need a statement?' and they say 'yes, definately' - which they then write in their report

Seriously, if they do give you a dx, ask about a statement there and then.

Good luck.

I had a similiar experience at my childs Dx, the head and the LEA refused to share any information from the Ed Psy assessment with me unless I agreed to the head teacher being present for the diagnosis (Head teacher attitude towards us and our child was awful).

The school and LEA refused my request for 5 minutes without the head being present just to hear the dx. I had no option but to agree to her being present. I did make a formal complaint expressing my concerns about the LEA and psychologists lack of insight into breaking bad news to parents.

I can understand the importance for parents and professionals to share information so all the needs are covered and a plan can be made to ensure that the childs best interest are met. I do feel that sometimes this becomes routine and some professionals forget that for a parent this meeting is a life event. It was so hard going into a room to be formally told that my child had severe learning difficulties. I completely agree with you that the ASD team should be sensitive to fact that this may be the appointment when you hear offically for the first time that your child has a life time disability. I feel it is very reasonable to request that the initial diagnosis is given in a non hostile environment. I think you need to have a chat with the chair of the meeting.

The SEN process is so long - keep focused, save your energy for the potential battle ahead. Get the dx, then make sure that the statement is adequate for his educational needs. It is all worth while, our child is much happier and is making progress.

Good luck

I will go with it, as i need the dx, no point in coming this far and then biting off my nose to spite my face i suppose.

I will try to think more positively about this, school would have to have some miracle 'evidence' to challenge a dx and i have just got LA to agree to SA, without a dx or school backing, so ds's difficulties are obviously well documented.

Just needed a bit of help to get this into perspective, thanks guys

claw my ds goes to a specialist school and even though they have said in thier opinion he has all the traits of autism, they have also said it is a medical diagnosis so your ds's school are talking out of their arse rubbish. I'd go ahead and let them put the school straight,Hope all goes well for you.

well i can tell you that no one from school turned up to DD1s dx appointments, nit even the SENCO but it went ahead anyways.
I would let them deal with it, turn up, assume school are going unless told otherwise. Trust me with all those people there they wont halt the meeting.

FFS is this still going on. This is shocking behaviour.

Claw You need to write to them right now and say that you have grave concerns about the school's involvement and will find it difficult to be reassured that your ds will get an accurate and unbiased diagnosis or not if they are present. You will not halt the meeting as it is in your ds' interests to have the assessment, but you will be putting in a formal complaint about the unnecessary and unjustified pressure and strain on your family this has caused.

They might then not want to risk the school coming in case you complain about the shoddy way the dx was given and question it.

And then see what happens. I did similar to our EP. I told her that I can't stop her coming, but she needs to know I do not want her there as I believe she will sabotage the meeting with the school and her presence will turn an amicable meeting political. She told me she had to be there and the HT had requested it. On the day she simply did not turn up.

But you know what Claw You're made of stronger stuff. You WILL survive this.

If you want to defend with attack, you can send a list of questions to the doctor, that you feel the school should answer to give a good picture of your ds.

Naturally the questions will look like this.

i.e. the day he pulled out his eyelashes what was happening just before that? how did you deal with it? how did he react?

I think Star is right. Go along with it but say you do find it inappropriate that school are being invited to a private clinical appointment and that you are especially concerned given school's unsupportive and ineffective attitude to date.

You could also point out that although ed psych's frequently feed in diagnostic meetings, it is unusual for school's to actually attend the dx with you!

I think the panel here send a questionnaire to school but I have to say I still worry about interference given the fact that it is in everyone's interest for a child who doesn't cause a school problems to be considered to have no problems.

Have emailed ASD Service stating i will go along with it, but pointing out again what i am not happy about.

I will go armed with examples of school's inability to understand ds. The conflicting profiles that they fill out etc.

I have also asked CAMHS to attend and they have agreed. Also invited EP and Senior SALT.

This multi disciplinary meeting was to involve ASD Service, myself and school! I despair.