Here are some suggested organisations that offer expert advice on SN.
Thank you to Poltergoose and other kind people on this forum.(9 Posts)
I posted on here a couple of times - here and www.mumsnet.com/Talk/special_needs/1714766-Would-this-be-appropriate-information-to-show-a-GP-ed-psych-paediatricianhere about the challenges I was facing with my DD. On the strength of advice I got from lovely posters on here, especially Poltergoose, I went to the GP with my list of concerns and asked for a referral.
Today, finally, I saw a developmental paediatrician with my DD. The paed was absololutely lovely and totally on-the-ball - more than I ever could have hoped for. Despite DD doing her very best impression of the world's most NT child she diagnosed AS/HFA after the hour interview. I feel a mixture of relief and huge emotion.
Next thing, apparently, is that we see a SALT and a clinical psycholologist, and their confirmation and corresponding reports comprise the 'official' diagnosis.
A couple of questions...
After the paed has made a diagnosis, is it pretty much taken as read that the SALT and clin psych will confirm the diagnosis? Or could we be back to square one after these next appointments?
I have read about about so many people fighting for years to get a diagnosis, so I can't quite believe how great the consultant was and how quickly that happened. Is it the statement people fight for, rather than simply the diagnosis? Was I just really lucky?
I'm still a bit shell-shocked, tbh.
The SALT and the clinical psychologist will verify the "flavour" of ASD ie level of language and communication impairment, whether there appear to be any co-morbid conditions warranting further investigation etc.
And some of us are really lucky with our own local circumstances, compared with others.
Thank you Ouryve. i'm really counting my blessings as I knew that DD is probably a borderline case and that AS/HFA presents quite atypically in girls. I was really expecting to get a consultant who wasn't up to date with that and laughed in my face, basically. She was bloody wonderful though, asked all the right questions and elicited all the relevant responses. Said some fascinating stuff about how ASDs present differently in girls, in her clinical experience, and how many of the classic markers of ASD in boys are different or absent in girls, and that you see different expressions of the condition.
I reckon you were one of the lucky ones. It's good to hear of someone not having to fight tooth and nail to get taken seriously.
How refreshing newyear I am really glad you found a paed who had uo to date knowledge about girls with Asd. I also have a girl and I did meet several proffs during her assessment who were switched on about girls. Sadly it took 2.5 years to get referred to them. Hey ho!
Good luck and be kind to yourself
How lovely to read this, obviously it is a rollercoaster of emotions for you, OP, but so much more helpful to have access to on-the-ball, up to date professionals. They are few and far between. Really happy you have found one.
Thanks Ineed (love your name btw - so do I!) I'm struggling with a big heap of guilt at the moment for all the times I've been angry and exasperated at DD for stuff that she really couldn't help. I know that's not really helpful though and I need to look forward not backwards.
Yes I reckon I was very lucky too. I asked specifically to be referred to my local child development centre but when the appt. letter arrived it wasn't for there and I was a bit miffed. Then I lost the appt. letter and couldn't track down who the bloody hell I was meant to be seeing. When I found that out and googled the consultant's name I coudn't find any mention of her online so I didn't have high hopes of how it was going to go. I was very anxious that DD would somehow see the list of concerns that I wrote about her so I phoned the Dr's secretary to ask if I could email here or something. The consultant actually called me back to reassure me and was incredibly nice on the phone, even saying that from my description it did very much sound as though DD is on the spectrum (I'd said I expected to be laughed out of the office), so I was much less anxious after that call.
DD is home educated, so maybe this was an easier process because I didn't have to go through the school/lea people? Don't GPs have to refer you to a specialist you request?
If anyone is in the Surrey area and would like the name of this consultant, I'm happy to pass it on. She recommended the Tony Attwood Complete Guide to AS, and said that it's a bible for them on how AS presents in girls.
Hi Poltergoose <<waves>> Thanks again to you and all the people who took time to post at a time when I was really in a muddle about what to do for the best.
I'm so glad I did ask for that referral though - it really makes sense of DD's quirks and challenges and will help me understand her better. Also it's pretty much decided me that I will continue to home educate her through secondary level (she's ten). My instinct is that she would be eaten alive at secondary school and I'm going to go with that instinct. She's got a genuine friendship group at the moment for the first time in her life and I think that's really important for her.
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