getting my daughter diagnosed - help!! !

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i just signed up to this thing so bear with me. i have been trying (timidly usually) to get my daughter diagnosed for years. she's almost 16 now and really needs help - gcses, etc - but really she will probably cope somehow as usual - but she SUFFERS. i live in belfast and would be VERY wary of CAMHS or the NHS on this issue, especially for teens. thought about going private - really, i guess i just want her to know herself - to understand and have more tolerance of herself. everything i've seen confirms in my mind she has some traits. i think i do, too but at 47 i'm pretty used to things! any advice???

Welcome to the forum I find this place very useful.

I have a 5yo daughter currently being assessed for AS. Its taken a long time to get through to the right person, we got no help from the GP so had to go through several different people to get to where we should be. We are now with Midlands Psychology who are dealing with the diagnosis. I bypassed the child development centre and CAMHS as they were useless too. Hopefully there will be no need to go private as this can be very costly. Find out who would do the diagnosis and demand your GP refers you directly. I saw different GPs, one eventually was happy to write a letter to Midlands Psychology. It was actually Midlands Psychology that advised this, they had temporary drop in centres and I went for advice. If there is a medical body equivalent in your area you could try that.

Alternatively if you don't want any help after diagnosis just read up on it, get her to take online tests, do a self diagnosis just so she can understand who she is. Watch the film Temple Grandin, give her books on personal experiences, Aspergers in Pink is a great book, the subject of the book has a blog, she's now a teenager. There are other forums, chat pages on facebook she could join to chat to others, she doesn't have to be alone

However she may be entitled to help at school if she has a formal diagnosis which she wouldn't get without one.

Good luck!

WhirlingMind, a member here, has this thread in her sig:
http://www.wrongplanet.net/postt227311.html

It is about NHS, diagnosis and such, but there may be posts on there that apply to private diagnosis, and it would not hurt to introduce yourself there. I haven't read it because I am in the U.S, but she promotes it in her siggy so I would guess she would not mind me suggesting it.

thank you - it's good to talk about this. it's true i can't afford AT ALL to go private - i will look around or maybe just get her online. . does
anyone know of any specific techniques or tools for dealing with slowness, and for dealing with rigidity of thought?

Here is a link for the AQ test, an online AS test, its for adults, there aren't many for children but as she's nearly 16 this one may suit her better anyway:

AQ test

This is an Aspie Quiz too:

Aspie Quiz

Hope that helps. Its also worth doing an extensive google for everything to do with AS and how to get a diagnosis, forums are great for personal experiences. Im not sure about the procedure in Ireland.

As for help with rigidity of thought, that's the one area we don't have too much of a problem in so again I cant give any specific advice, it may be worth reposting it in a new thread

I have dealt with it by gently posing questions to try to get my son to think the rigidity through. I also like to subvert expectations sometimes, and throw wrenches in the works when I think he will tolerate it. If you give some specific examples of rigidity I bet we can help you come up with things. You have to do it gradually, though or they can cling to the rigidities with even more vigor,

Not only do I not mind, I positively advocate it! I'm so fed-up of CAMHS/the NHS letting people down (especially females) and I want to empower people, tell them what their rights are and point them in the right direction. I wish someone had given me this information a long time ago.

I don't blame you OP for being wary of CAMHS, so far they have been useless with my 11yo daughter, I am appealing their failed diagnosis at the moment. They are not only incompetent, but clearly don't understand AS whatsoever and I can tell that they are not up-to-date on their knowledge. They do not respond to letters nor return phone calls. I have had to involve a Stategic Commissioner at the council department responsible for the Children and Young People Overview & Scrutiny Committee. She is prompting them for a briefing as we speak.

The NHS has a really bad attitude. They claim that they recognise private diagnoses, but then you can't get the right person to acknowledge that in writing. I've also read some people got private diagnoses that they wouldn't recognise too. They won't admit mistakes even when you have a majority of independent clinicians against theirs. They won't give answers to simple questions to enable you to take your complaint higher. The Staffordshire scandal was just one cover-up, there are plenty more going on.

Any number of books are good if self-acceptance is your ultimate goal.

Girls are a little more challenging (and I have a boy, so I'm not as well-versed) but I recommend

Be Different by John Elder Robison
Asperger's and Girls by Temple Grandin (haven't read this one specifically, but we do often use her resources - and she is female!)
Aspergirls: Empowering Females With Asperger Syndrome by Rudy Simone (again, haven't read it but have seen it posted here a lot)
The Complete Guide to Asperger's Syndrome by Tony Attwood has a chapter on girls that I personally found enlightening

There are more listed in the sticky at the top of this thread. At 16, it's hard to say whether it is more important for her to figure out how to start working on/accepting herself, or whether it's important to find her a professional - could go either way. Couldn't hurt to try to give her the tools and see what happens.

how do you post a new thread? and what exactly does that mean - is that what i mean?

Go back to the parents discussion area and click NEW TOPIC at the top on the left. It will be a new question specifically on help with rigidity of thought and people will reply to that if they feel they can add to the subject. It will just get more answers on that topic as people wont see that second question unless they choose to view your original post.


...actually there's a link at the bottom left of this page saying new topic too, just under the image of the last post

thanks