Lost, waiting for a diagnosis that may never come...

[positive_about]

I haven't posted on here for a while, for a few reasons, but mainly because a year ago I was assessed for AS through my GP at a local diagnostic unit. The assessment went well, and they said I had AS there and then which I didn't expect - and would send out their report within a month or so. A year later, nothing, despite my partner having pestered the unit a few times to chase progress. By itself its worrying, but even more so because of the difficulty I've had getting this far, with a couple of psychiatrists dismissing that I have AS (despite admitted or showing they have no understanding of AS).

 

Luckily a social worker and another psychiatrist suggested I probably have AS, so determined to have this recognised, but this alone is not enough for me to feel I have AS - having the official diagnosis is very important to me, but now I feel this is not going to happen. The diagostic unit use external assessors who they repeatedly can't seem to contact or get a response from, so it doesn't look good. They may be extremely busy, but some feedback to explain the delay would have helped - but there's nothing. I was close a year ago to accepting that there was something behind my eccentricities and difficulties, but now I am back to feeling that I am just an anxious messed up freak, rather than actually having anything that may be behind things.

 

Has anyone else had a long wait for their diagnosis report?

 

I also need to change my username, struggling to be positive right now.

[Mihaela]

Hello Tim.

 

It's all very interesting reading how so hit-and-miss the system is. An appaling state of affairs. My story was that originally my GP laughed off the idea, and said there was no funding available for adult diagnoses in my area. When I insisted that it was my right to get one, things started moving. I saw the psychiatrist twice and then got my diagnosis quite quickly after that. I then saw him again soon after, along with a psychologist. Confirmation of what I long suspected came as a relief. My behaviour, sensitivities and world-view can all now be explained. My trouble at the moment is getting the necessary support - which is also my right.

 

You say a couple of psychiatrists dismissed that you had AS. There is no point at all in having a psychiatrist who does not specialise in ASC - especially if you're a woman or of very high intelligence. They're a waste of time, and there's always a danger that they may misdiagnose you. I was once diagnosed with schizoid-avoidant traits - which is nonsense. Not once did he even consider autism.

I fear the system is badly letting you down. Haven't they explained why it's taking them so long? Behaviour like this is hardly likely to improve our mental health. You should demand your diagnosis within 14 days. They've no excuse to cause you more stress by delaying, what to you, is a very important piece of paper. Tell them that if you don't receive it, you'll be making an official complaint. This is really the kind of thing the NAS should be doing. No wonder there's no consistency. It's a total shambles, like so much in this country - a 'post-code lottery'.

[positive_about]

Well, I needn't have posted now - my partner has since rung them and apparently my diagnosis report is on its way So that is a huge relief, and hopefully I can move forward now rather than being stuck in a rut.

 

Thanks for your response, it has been a long up-hill battle, but it shouldn't be this way at all. I should have been more pushy about my diagnosis, as my health has suffered whilst waiting without any explanation or apology.

 

One of the psychiatrists said 'people with AS can't tell the difference between a telephone and a person!' - which didn't fit what I'd read about AS. The other one admitted he didn't know anything about AS, but then said I didn't have AS (after I had a disagreement with my partner about something!). I just can't believe how there can be psychiatrists out there that have little or no knowledge/experience of AS/autism. Fortunately I've got the diagnosis now, so can put all the I've faced behind me - and try and find a to live my life as best I can.

[trekster]

Congratulations you are officially an aspie :-) If it helps I had to wait over 18 months and I was self harming, having nightmares, panic attacks (about the associated trauma unrelated to the aspergers) at the time of my diagnostic assessment. Taken another 20 years but I can finally see the "light at the end of the tunnel".

 

You might want to contact Autism West Midlands or another type of organization in your area who could recommend a psychiatrist who understands AS.

 

I got my BPhil in autism from the edgbaston university of Birmingham which is how I turned my diagnosis (and subsequent denial by my parents) into a positive.

[positive_about]

Thanks It has been difficult waiting for my report, my depression has worsened and lost the hope I had after being assessed last year - I get really anxious when waiting, not knowing whats happening.

 

Its been hard to think about post-diagnosis help/support without having my diagnosis in writing, but will look into it - I was assessed via Autism West Midlands SPARC unit, and had other dealings with them so well aware of them. I think they offer post-diagnosis support themselves, so that would be good.

 

In the past I looked into autism courses/degrees, to understand it more and maybe help others one day - but I struggle with social anxiety, poor concentraction, and lack of confidence, so not really ready. Maybe one day I may feel up to it.

[trekster]

The autism degree i did was distance education you do the work at home and email it in. Theres 2 optional residential study weekends which are full board and held in a hotel. Theres also disabled students allowance which can help pay for equipment, supplies and mentoring. There tutor groups but you can opt for an email only tutor group.

[Livelife]

I had my paperwork with my written report about a week after I was diagnosed at the Assesment appointment, I had to go there twice and found them helpful and they sent the letter when they said they would.

If there is any problems I either send an email or recorded delivery if it's a letter that way you always have proof of what you have done so if there is a problem it's harder for them to avoid the situation for whatever reason as you have documents to prove the events as they occurred.