Final Diagnosis Appointment Scotland

[CWP]

I have my son's final diagnosis appointment on 07 Dec. We live in South Lanarkshire. We have been told that he will be taken away (which concerns me I'm not sure how he will respond to that and we will be interviewed seperately. Other than that I'm not sure what to expect. He is 6 and 1/2 and we have waited a long time for this. Any advice?

[Sally44]

If you have any queries at all then get back in touch with wherever you are going with your son and ask them for specific details in writing eg. who will see him and for how long, what will they do - will it be observations, assessments - if so which assessments. You can ask to be present.

Can I ask why the appointment is in Scotland? Is that near to where you live? Who has referred you there. Who has seen your child so far.

Whatever happens you do have a right to a second opinion if you feel that is necessary. You can also speak with the NAS about where you can go locally to get a diagnosis. These are things to consider if there is anything you are not happy about with this forthcoming appointment.

[cmuir]

Hi

 

I live in Edinburgh. My son was diagnosed 3.5 years ago. The whole process was a lengthy one - we saw lots of different paeds, specialists, etc and felt like we were being passed from pillar to post. We had a sizeable file full of reports, but still no answers, until someone recommended a particular specialist. My son did get an appointment with the recommended specialist, who before seeing my son, read all the reports and spoke at length with me, before finally carrying out an ADOS. I wasn't pressurised to, but I allowed my son to go through the ADOS assessment without me being present (he was however accompanied by a children and families key worker who knew us well by then). I wonder if this could be what's planned? An ADOS is an assessment usually carried out by 2 or more professionals eg paed/specialist, SALT, psychologist and they usually look at a number of areas in terms of how your child presents. Eye contact, reciprocal language, imagination, etc are all looked at. It can take anything from 45 minutes to 1.5 hours. My son's ADOS was videotaped and afterwards the specialists sat down and studied the videotape in detail as well as the reports. It was a further 10 days after that, before it was confimed that my son has AS.

 

Others may disagree, but sometimes it's no bad thing to remove structure and familiarity. At least that way, the professionals observing your child will see him when he's perhaps anxious, etc. I'm sure I must sound callous saying that (no one likes seeing their child anxious, upset, etc), but whilst I think it's good to make adjustments for a child with an ASD, life isn't always structured - I guess, what I'm saying is that I feel to some degree it's a valuable life skill to teach a child how to cope with unpredictability, little/no structure, etc.

 

I'd advise giving them a quick ring just to put your mind at ease and also clarify what format your appointments will take.

 

Caroline.

Edited November 29, 2009 by cmuir

[CWP]

If you have any queries at all then get back in touch with wherever you are going with your son and ask them for specific details in writing eg. who will see him and for how long, what will they do - will it be observations, assessments - if so which assessments. You can ask to be present.

Can I ask why the appointment is in Scotland? Is that near to where you live? Who has referred you there. Who has seen your child so far.

Whatever happens you do have a right to a second opinion if you feel that is necessary. You can also speak with the NAS about where you can go locally to get a diagnosis. These are things to consider if there is anything you are not happy about with this forthcoming appointment.

We live in Scotland. He already has an Educational Psychologist and Speech and Language Therapist. They've been in place since he started primary school. At nursery he was treated as spoiled as he always cried when things didn'tgo his way. Now he is such a good boy its obvious that this only happens as a result of frustration at change or the unexpected. We have been more or less told that all the evidence is in place and this is more a formality than anything but I can't help but worry that it'll be a case of people who don't know him see him for ten minutes and say 'no he's fine'. I just want all the help I can get for him. He gets teased so much and I know this wont stop that but he needs help and guidance. I know that the Scottish system is very different and so when I speak to people on here they give advice and I mention it at meetings and they always say 'that only applies in england'. I've typed up a lot of examples about his behavior and obsessions and motor difficulties so I hope that helps. Its just that one time a Paediatrician said he seemed fine to her. That was because he was terrified to the core because he couldn't understand her accent. She also stated he had cafe au lait spots which I disagreed with and was proven correct. He has hypomalenic macules and his first cousin has TS so we are now waiting to hear if there is a connection. I am diversing here my apologies.

 

Thanks for your quick reply.

[CWP]

Thanks Cmuir. The thing is they told us it'll take an hour and a half and his diagnosis will be confirmed or not at the end of the meeting. So after about 4 years of concern its decided in an hour and a half. I find that odd! I take your point if he is anxious then it'll prob be evident but I hate the thought of him like that in another room where I can't help! That'll be two of us in an anxious state! The last time i saw him sit a test was at 5 to assess his language capability which came out at age 10. I was there so he was calmer but got very bored and withdrew eventually so I'm concerned he'll 'switch off' and they wont see the real him. I'm not even sure what they will ask us. I feel we are being judged but this all probably goes back to the anxiety I was caused by two years of a particualr nursery nurse (while I had Post Natal depression following my second son) constantly jusdging me and saying it was learned behaviour etc. I was told to ignore his 'tantrums'.But a 4 year old who panics at what seems nothing and hurts himself cannot be ignored. Rant!

[chris54]

When my son was attended the final assessment, he was seen on his own. The appointment was supposed to have lasted 2 hours, but ended up lasting over three as the clinical physiologist doing the assessment felt it necessary. They sent out for refreshment half was through. It was all do in the form of playing different games, with different toy and with another person there doing some of the thing while the doctor observed.

We observed the whole thing through a one way window and on a CCTV monitor, which was recording the whole thing, still go our copy of the tape somewhere.

I got to play with the camera controls doing the panning and zooming.

 

I would go on to say that it was the culmination of a lot of other meetings and being seen by lots of other people, The final report by the Clinical Psychologist was over 12 pages long and took in all of this including what we had said ( we were asked to fill in a report/survey as well as to write down our views) , what his school had said and the results of all the different tests that had been carried out. We did see her straight after the meeting but it was a week or so afterwards that we actually go the report with the official diagnosis.

From start to finish it was about a year I think.

 

 

[Karen A]

http://www.asd-forum.org.uk/forum/index.php?showtopic=20379

Hi.I don't know whether you have spotted that there is some information regarding education in Scotland on this thread.

Procedures are slightly different in Scotland compared with England so you might find this useful.

Karen.