Hi all :)

[Echo]

Hi

 

I am a 28 year old woman from the North West Wales area, currently (as far as I know), on a long waiting list seeking a diagnostic assessment for A.S.

 

The reason why I said; as far as I know is; the doctor told me that he had put me on a waiting list, but it's been almost six months now and I still haven't received any written confirmation of this. I've been with this surgery for two years now and I haven't received so much as an antibiotic, or in fact; any support from them at all!

 

I'm guessing that I'll have to go down to the surgery again at some point to give him a little nudge to get things going

 

Anybody from around my area have any experience of the diagnosis procedures or resources available to me? I've been stalking the internet and I can't find anything (services etc...), that would be of any benefit to me so far.

 

On another note, is it worth it for me to; go private and seek an assessment from a specialist who has experience of diagnosing women on the spectrum (rather than; waiting 2-5 years only to be faced with a psychologist/psychiatrist who believes it impossible for women to possess such characteristics)?

 

Anybody on here ever used; Hendrickx Associates for training, consultancy or support? Were they useful?

 

I guess my main question really is: is going through Hendrickx Associates to get an assessment and then taking the findings to my doctor to get the right person to do my diagnostic really worth it? Will it push things along? Be of any benefit?

 

Thanks

[Lyndalou]

Hi Echo and welcome to the forum

[Echo]

Hi Lynda, thank you for the warm welcome

[positive_about]

Hi Lynda, and welcome.

 

Things do take time, and professionals can say they are going to do something and then don't, which I have had a lot. I would go back to them, ask them whats happening and how long you may have to wait, and tell them having to wait is causing you anxiety and stress. I've been fighting to get a diagnosis, and still not there yet, but getting closer. One of my psychatrists just said I was a nice guy, and I needed to work with nice people. A few years back, when I was having a bad episode, someone from the crisis team said I was too intelligent to be ill. All my life I get this wall of apathy or rejection to my concerns, but I will keep going because I strongly feel I have Aspergers and have traits which others have identified as being Aspergic. I may be borderline to them, but I struggle daily so I don't feel borderline.

 

It is hard work as an adult to get help and support, but be positive and just see that as a challenge - not a barrier. You can get help and support here as well, or via the National Autistic Society, and maybe local adult autistic services if you have them. Do what you have to, don't stop.

[Echo]

Hi positive_about (or Tim?)

 

Thank you for replying to my message.

 

I am 100% with you when it comes to staying positive!!! Just at times; feel incredibly lonely/isolated and frustrated - being stuck in limbo.

Although, I feel as if it's a daily struggle to cope (even since early childhood), I fully recognise that I have a lovely supportive family who are very adept at preempting any serious meltdowns/providing understanding etc..., so, I'm o.k. and can/will do everything in my power to get an answer either way in relation to diagnosis (I just can't wait another 2-5 years for it).

 

Thanks again, I'll call NAS later x

[JeanneA]

Hi there, welcome to the forum. Did you manage to call NAS? Hope all went well with your call.

[Echo]

Hi Jeanne,

 

Thank you for the warm welcome.

 

I've attempted to call NAS several times since dinner time yesterday, however, the only information that I am able to receive is that; no one is available to take my call at the moment (takes deep breath and says; "I'll try again later" ).

 

I am also waiting for them to respond to my e-mail - which was sent almost 10 days (ish) or so ago (the second that I've sent since September - as I did not receive a reply back then). I'm not holding that against them - The first may not have reached them (the joys of technology ).

I'm sure that they're very busy people and it does say that it may take 14 days to reply - so I can wait a little longer - It's not the end of the world .

 

I'll let you know if I get a response (whether it's helpful etc...).

[Lyndalou]

Hi Echo

 

Are you trying to contact your local branch of the NAS or the National Helpline number? I can understand your frustration - nothing worse than being kept on hold or worse still getting through and then getting the annoying message that tells you to phone back another time and then you get cut off! Also, 14 days seems like a heck of a long time. Fingers crossed you got through....

 

Lynda

[Echo]

Hi Lynda,

 

I started off by phoning the helpline. More than a dozen attempts later, I decided to change tact and phone NAS Cymru.

 

I got through straight away to a lovely sounding south-Walian lady who took my contact details and said that she'd pass my message on to the North Wales regional office (as she was an admin assistant and didn't feel that she would be able to answer me with confidence/certainty - which is fair enough).

 

It wasn't confirmed whether I was going to receive a phone call back this afternoon (although she stated that I could be phoned today), an e-mail etc... so, I'm just sat at home, not being able to go out just in case I miss the call.

 

I'd rather they call me than send an e-mail (because one suspects that this is going to take days if not weeks to get to me), however, any information regarding my predicament is still information I suppose (although, the charming lady on the phone could have spent more time listening to me because; I didn't get to ask her what I wanted to - but there we go. I'll get another opportunity I'm sure).

 

Going to make some tea now, talk soon and thank you for you interest.

[JeanneA]

Hi there, I do hope you receive that call soon, I know too well what it's like waiting for phone calls from organisations or professionals so I do feel for you.

[Echo]

Well, today is the 14th day and I should (as the NAS website promised), get some sort of an e-mail reply today.

As far as the phone call promised goes; I still haven't heard a peep so far.

 

It's funny really how I want a phone call. If you knew me, then you would realize that it's against my nature to want to hear the phone ring.

I don't know if this is the same for other Aspies/Asperger's (which ever is the most comfortable/accepted term), but usually when the phone rings two things will happen;

 

1) I have to be the one that answers it. So there's a mad rush to jump over the sofa to grab at the receiver.

and

2) The sound really unsettles me for the rest of the day (my back between my shoulder blades tense up and tingle, and there's a huge empty churning bubble in my stomach). I've changed the ring to a tone etc but, nothing seems to work.

 

Is this a common thing?

 

Thanks

[trekster]

Yes im not very keen talking on the phone.

[Echo]

Hi guys and gals, I finally received an e-mail reply from NAS this morning

 

They suggested three private practices where I could possibly have a diagnostic carried out.

 

These were;

 

AXIA - Dr Linda Buchan - Chester

Dr Johnathon Jones - Shropshire

Schakel Hildeguard - Manchester

 

I've tried to call them to no avail. All I keep getting is answer phone messages asking me for my name and contact details (I'm not happy with sharing this information unless I have a human on the other end).

 

Anyone on here had any experience with the aforementioned people/practices?

 

Thank you

[trekster]

I haven't but you might want to leave a phone number and name asking for them to call you back.

[Echo]

Hi again guys and girls,

 

I decided to follow-up my referral by the doctors surgery today(as I had not heard a peep from them since last September).

 

The Doctor there told me that;

 

- They had sent the referral

- It was very unusual that I had not received any confirmation or invitation

- To call the unit where I had been referred to and ask about my place on the waiting list (how long etc... as they as my Doctor's weren't allowed to)

 

Thus, I went home and called the unit.

 

It was here that I learnt that they had not heard at all from my Doctor since 2007!!! (And that it was a discrace that I have had to wait so long to get an appointment Sept 2012 - March 2013).

There was however, a referral made to their team back in May 2012 (on my behalf) which they say they have to wait before they can follow-up on.

 

I was then told to phone my surgery again to fax the referral through for Monday.

 

My Doctor was none too impressed as this had happened several times to her this week alone.

 

So, my next step would be phoning both again on Monday to make sure that the message has been sent and received.

 

Lucky that I decided to check However, I still have no idea what's happening (time-scale etc...).

 

- Oh well, I've waited this long I suppose

[trekster]

Really disgusted with the treatment you've received. I waited 18 months to discover the fax from one department to another hadn't gone through and was in agony waiting for the pain clinic.

[Echo]

@trekster...Ah, the joys of having to utilize the NHS Well, done them.

 

On another note; Liverpool F.C for life!!!

[trekster]

:-) there is another Liverpool fc supporter on here so at least 3 of us.