Here are some suggested organisations that offer expert advice on SN.
GP said no to second opinion again. I give up. :((12 Posts)
Waited patiently for this appointment. In between time we saw his Paed. They merely glanced at the behaviour diary. Admitted Ds was a 'Difficult Child' but was all for signing him off. They don't think he has ASD and they only saw elements of ADHD. Then patronised me into telling me I'm doing a good job as a mum and that I need to have a good working relationship with the school. . I'm a single Mum on Benefits. Saving up for a Private diagnosis is going to take forever.
If anything. Me being nice and honest to the School has been my downfall. The School have said he's fine. We had to visit the Doctors Surgery a while back as he had an ear infection. The first thing his family nurse said to me "he's getting worse snowgirl801 he never used to be this uncooperative". Last week whilst out shopping I bumped into an old friend. First time she'd seen Ds. First thing she said "Is it Aspergers?". Why? Why is it SO obvious to everyone apart from the very people responsible for the diagnosis.
Please if any of you have any advice as to where to go next or who to complain to to get another Paeditrician please do share. Because without I'm just going to give up and let them keep me pegged as the Bad Mum who can't cope with the naughty boy.
I would order a copy of Tony Attwoods Complete guide to aspergers and then go through it either high lighting or sticking post its on every relevant bit. You need to provide real life examples of why he fits.
Also look at the triad of impairments and do the same!!
Dont give up!!
I don't have any suggestions for you, sorry, as we're very new to all of this. We're learning too, but I diidn't want to read and not reply. Its so frustrating for you to be alive to your DS's problems, yet have nobody listen to you. I'm sure someone helpful will be on soon.
Might the nurse back you up on this? The GP might pay a bit more attention to her.
I read (I'll need to search where!) something recently that said children manage until demands exceed their capabilities. Then there is the deterioration due to stress and anxieties.
Bare with me and I'll re find it and give you the direct link and where quote is from. It will meet with what the nurse said.
Can you keep a different sort of diary? Rather than all the behaviours (eg kicking/hitting etc) there are things called abc charts. You may find what triggers the behaviours. It may be helpful to show the behaviours are reactions to sensory input (noise/ crowds), because he's socially overwhelmed/ isolated. They also allow for you to put time of day, location etc to show if there is a pattern.
Other than that I thought we are all entitled to second opinion? I'm sure a quick Google will give you all the info you need?
I think the quote youarekiddingme is referring to comes from the dsm-v criteria for asd. It rings a bell.
'Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).'
Yes that's exactly where quote comes from! I remembered when I read DS dx letter that's just arrived and came back to tell you!
His dx appendix - behaviours that meet criteria mentions early speech and limited play and how behaviours deteriorated when his peers progressed and he didn't.
Complain to PALS.
Have a look at your Local offer on your LA website, most have the ASD pathway on there, see if there is an ASD coordinator who you can contact.
If in your area you can self refer to OT, do it (if he has any sensory difficulties, or motor skill difficulties).
Message withdrawn at poster's request.
We had the same for years. I got so fed up 18 months ago, after yet another fob off from the silly cow of a paed we'd been referred to twice. I was told I was an over anxious mother and there was no way my daughter was autistic, all from a 10 minute 'assessment' - I say that very loosely!
So I went to another member of the team, that I'd had good dealings with previously and seemed to be thinking similar to me. He referred our case to the head of service for the paeds. Eventually, after 4 months he referred us to the best psychologist in our area. We had to wait 6 months nearly to see her, but boy it was worth the wait!
Six months of intensive assessment, several 3 hour meetings etc, and we got a diagnosis of ASD (Aspergers)! The woman we were referred to has been amazing, and didn't just look at our daughter, but looked at us and how it was all impacting on us individually, as a couple and as a family. She was also instrumental in hubby getting his ASD diagnosis one week after our daughter got hers!
So, my advice is to def complain. Do not accept what you are told if you truly believe there is more to it. You know your child best, and live with them everyday. Trust your instincts. Good luck!
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