cmuir Report post Posted March 30, 2006 Hi Nightmare! I have a 4 year old son who is due to start school in the summer. As yet, I'm still battling to get a diagnosis. He's had numerous assessments and I'm still waiting on referrals ? being passed from pillar to post in other words. Everyone is in agreement that there is something wrong and are only willing to say 'something on the spectrum'. Finally, he's just started being given one-two-one support at nursery. Anyhow had a meeting with headteacher, EP, etc at mainstream school he's due to start in the summer. Was horrified by that dinosaur of a headteacher, who is thankfully retiring before he starts school, so I'm not going to worry too much about her. However, the support (a full-time learning assistant or auxiliary) that the EP lead me to believe isn't going to be there. When I insisted on being given a straight answer, all she could say was that the teacher would get outreach support from a teacher from a special school to visit (couldn't say how many hours per week). Typical! I need to get wise and fast. I was going to write to my LEA (take it that's the education authority?) and request a statutory assessment. Was also going to write a letter to say that I think the support that is currently being proposed is grossly inadequate and they'll effectively be setting my son up to fail before he even starts mainstream school! In addition, in the absence of a formal diagnosis, think I need to get a private diagnosis. I'd be really grateful if anyone could advise of a specialist that they have had positive first hand experience of ? NAS couldn't recommend anyone! Also, who and what exactly are the Early Years team? Are they in Edinburgh? Please help! Really desperate! Advice gratefully received. Thanks. Caroline. Quote Share this post Link to post Share on other sites
JenRose Report post Posted March 30, 2006 Hello, Tess got a private dx for her son if i remember correctly and she lives in Scotland. Hope this helps Quote Share this post Link to post Share on other sites
Lynden Report post Posted March 30, 2006 (edited) Hi Caroline We didn't have a private diagnosis but we were diagnosed through the Raeden Centre in Aberdeen. They are fabulous and maybe worthwhile contacting to even see if they know how you could get a private diagnosis. Also http://www.autism-in-scotland.org.uk/ has more Scotland specific info than the NAS. I hope you get some joy soon. Lynne Edited March 30, 2006 by LLaverty Quote Share this post Link to post Share on other sites
Viper Report post Posted March 30, 2006 I think I might be taking the same route. Anyone know how much it costs? Quote Share this post Link to post Share on other sites
Flora Report post Posted March 31, 2006 I think I might be taking the same route. Anyone know how much it costs? Last year I paid for Luke to have a full EP assessment with the dyslexia institute... about ?300. And a full assessment with a CP...?200. It varies in the cost depending who/where the assessment is but as far as I can tell it can range from ?200 - ?350. Lauren Quote Share this post Link to post Share on other sites
zaman Report post Posted March 31, 2006 The NAS as previously mentioned have a list of people that can do assessments which they can send out to you. Be warned on the statement front though, even though the deadlines that are set are statutory for most of those involved (largely Education), they aren't for Health. I was in roughly the same boat as you this time last year, and started the ball rolling in Feb with the hope that his Statement would be in place for the start of school in Sept. When reports for my son had to be submitted by a certain date, everyone but his paed did. Which means that he was effectively taken out of the loop, and started school with no statement. (Unbelievably, it still hasn't been written as his keeps being put on the bottom of the pile). What I did get was a bridging support from Education of 20 hours per week, because I wasn't going to stop phoning them and talking discrimination. Two tips - if you have an organisation like Partnership with Parents, enlist their support. And keep the pressure up with all of the people that need to submit reports for the Statement to make sure they do it (and keep a file of all those phone conversations/letters/emails). Quote Share this post Link to post Share on other sites
board Report post Posted March 31, 2006 hello i was trying to find out want was wronge with my daugther and getting no were so i asked the heath vister she filled all the froums in for me its only taken a couple of months will find out on the 12 if my daughter 6 as aspergers hope this helps jill Quote Share this post Link to post Share on other sites
carrieq Report post Posted March 31, 2006 (edited) HI, We live just outside Edinburgh and are seen by Sick Kids. We were going to use this Dr for an ADOS but our psychiatrist is going to do one in the next couple of weeks. Dr XXXXXXXXX is meant to be very good. She does private work and someone in our support group used her initially on a private basis but when she started assessing the son she put them into the nhs system under her. Dh also worked with her during his community paeds rotation and raves about her! Hope this helps Carrie Edited March 31, 2006 by Kathryn Quote Share this post Link to post Share on other sites
cmuir Report post Posted March 31, 2006 (edited) Hi Carrie I heard that XXXXXXX was off on long term sick leave? Is she back now? Caroline. Edited March 31, 2006 by Kathryn Quote Share this post Link to post Share on other sites
Kathryn Report post Posted March 31, 2006 Hi everyone, Just a reminder that if you're sharing information about particular individuals, please can you do this via PM? Thanks, Kathryn. Quote Share this post Link to post Share on other sites
cmuir Report post Posted March 31, 2006 Hi Ooops, I'm really sorry. I didn't know what PM was ? until now. I'll certainly do that. Thanks. Caroline. Quote Share this post Link to post Share on other sites
carrieq Report post Posted March 31, 2006 SNAP!! Didn't think about names...oopps!!! Carrie Quote Share this post Link to post Share on other sites
Tally Report post Posted March 31, 2006 It's not always easy to get a diagnosis for a child under 5 because it's hard to tell the extent of the child's difficulties. A private doctor may feel the same way. If a diagnosis of "autistic features" is enough to get him the support he needs in school, it might be worth accepting that until he's old enough to be given a firm diagnosis. Quote Share this post Link to post Share on other sites
cmuir Report post Posted April 1, 2006 Hi Tally That's just it, a diagnosis of autistic features is enough to get my son the support he needs at nursery (just been given one to one support starting 4 weeks ago). However, seems it's not enough to get him support he needs when he starts school in the summer. I keep hearing from these so-called specialists that as far as they're concerned we don't need a diagnosis ? oh but we do!!! We can't access the services that would otherwise be available. Reason I'm considering seeking a private diagnosis is because it takes so damn long to get anywhere on the NHS eg we've been waiting nearly 3 months for an emergency referral to CAMHS! I realise that there are milestones that a child has to reach in order for specialists/others to actually see the differences/compare with other kids, etc, but my main issue is that there are long waiting lists. If you were paying for a service like an assessment which ultimately could lead to a diagnosis you wouldn't have to wait anything like the same length of time. Caroline. Quote Share this post Link to post Share on other sites
Tally Report post Posted April 1, 2006 I see. I didn't want you to go spending a lot of money for the same answer as you'd get on the NHS. But as the waiting lists are SOOO long, I see your urgency. The National Autistic Society may be able to give you a list of Drs in your area who can diagnose autism. Quote Share this post Link to post Share on other sites
