Adult Diagnosis - Embarressed

Goatworshiper said:

...Wondering about it is driving me to distraction at the minute. 

Azpie said:

As soon as my GP referred me that was all I could think about, I was worrying constantly, what if I was wrong, what if they said I was normal etc etc. I'm so glad it didn't take too long to get to the clinic, thankfully they had that cancellation otherwise I could have been waiting a further 3 months.

...

I can relate to your worries GoatWorshiper and Azaezl.  I was worried that I might end up being diagnosed with something more sinister than Asperger syndrome or worse, I might be told I'm just an insensitive jerk with hypochondria. 

I was not able to think about much else between the GP referral and the appointment for assessment.  In fact I was so anxious that I had given up on the referral after not hearing anything for months and months and started investigating getting a private assessment.  I was pleasantly surprised to get a letter asking for preliminary information in anticipating of possibly being scheduled for an assessment right after I had given up on it.  After sending the requested information back I expected a long wait to hear whether or not I would get an appointment and if so it might be set for a date several months later.  As it turned out, it was weeks rather than months from that point, so I was again pleasantly surprised.

It was about seven months for me from when I finally decided to pursue a diagnosis to when I had it in hand.  I had talked to a GP about suspecting I had Asperger syndrome over two years before that, but told her I did not see a need to pursue a diagnosis or help with it at that point.  It was first suggested to me that I might have Asperger syndrome about two years prior to that by someone close to me who happens to be a psychologist that works with children on the spectrum.

I read a huge amount about AS in the months prior to seeing the GP for a referral.  I may have been lucky to have seen two GP's at the surgery that happened to be familiar with Asperger syndrome.  The one from whom I requested the referral was wise enough to suggest that I write her a letter explaining why I thought Asperger syndrome described me because I wasn't very good at explaining it to her in person.  I think that helped a lot.  It probably saved her some writing as well.  

I think it also helped that it wasn't the first time I had discussed my suspicions about it with a GP when I requested the referral.  They had to know it wasn't just some passing whim when I felt much stronger about it after more than two years of contemplation.  In all, it was well over two years from start to finish for me in that sense or well over four years if measured from when I first began to suspect Asperger Syndrome described me.

Hopefully those out there urgently in need of services and accommodations can find their path to diagnosis a bit quicker than my rate of four years between suspicion and diagnosis.  I think I am adapted beyond the need to seek specific help.  I primarily wanted to confirm what I already knew so that I could confidently continue working on adaptations on my own.  I can tell already that it will be helpful for others around me to understand and accept certain things about me that they will never change.

Good luck to GoatWorshiper and anyone else out there seeking a diagnosis.  It is probably important to keep an open mind about what might explain your symptoms.  It is probably much more important to discover the scope of your limitations and what type of help you might need than to get a particular label placed upon you.  I feel a bit silly now thinking about being concerned that some other diagnosis might be more appropriate for me.  Knowing myself was my goal after all whether it was AS or otherwise.

Also, I neglected to mention that the info on the NAS website and an email or two from them were immensely helpful to me.

Went to this appointment this morning. They have refferred me to see an "Autism Expert". The people I saw said they believed "I may have Autism" so they had no quarms about getting me refferred. They said it may take two appointments to get a diagnosis and it will take about 6 weeks for my first, letter to follow in the post. The people I saw I already knew as my GF is a service user and they seemed to think what I was telling them was within the framework of what they already thought. In a sense I think they thought I autism but didnt express it. I actually really like the lady that I saw, she has the correct proprtion of being professional and personal.

They did say if I got a diagnosis they probably wouldnt offer me any support, but they would keep me on file and I could access services direct rather than through the GP. In all honesty I just want to understand myself a bit more at this stage, one of the main things I want from a diagnosis is liquid medicine when required.

I felt ill going in, but great coming out. Quite bizarre. 

Azpie said:

Well good luck, I hope your appointment goes well

Thank You

Well good luck, I hope your appointment goes well :)

Yeah they do take NHS work.

Im going to give the NHS place a go, NAS sent me an information pack to give them etc. I'll see how it goes, as I can't get back to my GP's before my appointment as I'm working a silly amount of hours next week, off to Poland straight after and that appointment is two days after I return.

As soon as my GP referred me that was all I could think about, I was worrying constantly, what if I was wrong, what if they said I was normal etc etc. I'm so glad it didn't take too long to get to the clinic, thankfully they had that cancellation otherwise I could have been waiting a further 3 months.

Does the place NAS told you about take GP referrals? If so I'd go back and ask to be referred because only a specialist/someone trained to recognize asperger/autistic traits is going to be able to give you a definate yes or no answer to whether you have it or not. It's so easy for someone who doesn't know much/anything about it to see the obsessive side of the condition and jump to the conclusion of OCD. Or in my case someone who has echolalia/hand stimming being diagnosed with tourettes or the social awkwardness/lack of understanding etc being mis-diagnosed as just social anxiety disorder. 

When I rang NAS (after my gp refered my to the local mental health access clinician) they told me about a place about 12 miles that took on NHS work. That's my plan B now. 

4 months is very quick, it took my about 6 months all told to get a dyslexia diagnosis. Wondering about it is driving me to distraction at the minute. 

From my very first appointment with my GP (to tell him I suspected I had Asperger's) to actually getting my diagnosis it took about 4 months. I did bypass alot of the inbetween stage, from what I've read alot of people see a psychiatrist (or similar) and / or  are bounced around the mental health system (often being mis-diagnosed) before finally getting to see a specialist. Luckily for me the area I live in has a highly specialised clinic that take GP referrals.

Got through and got some details about local organisations.

Give NAS autism helpline a ring, couldnt get through. Answerphone message is on. Will try again later.

Are we talking Months or Years in terms of diagnosis taking a long time?

Diagnosis can be very difficult. It took me a long time. I was already receiving CBT for ongoing and entrenched OCD (which I have had since I was a little girl), but knew I had something extra. I was referred by my GP (a Locum who was very understanding - sadly, she has now left the practice) to a CMHT Consultant Psychiatrist, who was very old, on the verge of retiring, and still used old fashioned words like 'neurosis' etc, and did not put me at my ease. She wrote in her report that I could not have AS as I interacted too well!. She had asked me no questions relating to AS, just asked questions about my OCD, hand-washing and anxieties. Of course I can interact fine in such a formal, one-to-one situation!. Anyhow, I asked for a second opinion. The next Psychiatrist I saw, a young man, agreed I could have AS, but he could not diagnose me as it was not his area (the only annoyance here was that he called AS a 'disease'), so I got referred to a specialist ASC service where I got diagnosed after a lengthy process. 

Cheers Scorpion & Azaezl.

Im quite strong willed thankfully. Tomorrow I will ring the NAS, so at least Im going somewhat armed. Im wondering what to take to the access person? 

The letter from the mental health services says "to asses my needs"  From my perspective my greatest need is finding out if I have Autism/Aspergers or not.

Scorpion is absolutely right you need to keep going until you get seen by someone who knows what they are talking about. It's no good seeing someone who has no training on ASD's as they will not pick up on the right things and you could end up with a mis-diagnosis.

To give you an example my own diagnosis could have gone badly wrong if it weren't for the great NAS advisors support and my own determination to get to the right person.

I went to see my GP, explained that I thought I had Asperger's, told him why, I had a long (3 pages) printout of all the various traits I have as well as things from my childhood. I printed out my AQ scores, aspie quiz score etc etc and some info from this website that is aimed at GP's. He was very honest and said he had never come across Asperger's so he'd need to consult with the other GP's to see what the next step is. The next day I get a call to say I've been referred to the mental health team and I got an appointment in the post to see a gateway worker (which is probably the exact same thing as an access clinician just different wording).

So off I went to the apointment with all my printouts, again I explained why I thought I had Asperger's, gave her all my test scores and list of traits etc etc. Before she looked at a thing she told me that I couldn't possibly have Asperger's because it's a childhood develomental disorder and I was an adult....she then said what would be the point in getting diagnosed anyway because there is no support(I did say I just wanted to know, I had coped so far so wasn't so much interested in support as just having an answer for why I am the way I am).

Then she read the first paragraph of my printout which mentioned my obsessive rituals and hand patterns (stimming), she quickly flicked to the next page and skimmed through a couple of lines..laughed! and then said it was clear that I had obsessive compulsive disorder, handed me all my stuff back and said she'd have to speak  to her manager to see who to refer me to as my OCD had been going on for so long that I'd need quite intensive therapy for it so she wasn't sure which psychiatrist to send me to. I'd also mentioned that I thought perhaps my daughter was on the spectrum as she had alot of traits and her sensory probelms are worse then mine, she laughed that off and said "all kids have little obsessions and funny ways, she's fine, any problems she has she's learned from you" I wanted to punch her at that point, how dare she say my daugter's probelms are my fault but I kept my calm and just screamed and raged in the car on the way home.

So yeah all in all she was an absolute disgrace and only that I'd read alot about ASD's and had gotten alot of great advice from NAS did I not come away from that appointment completely deflated and agreeing with her 'diagnosis' of OCD. So I waited to be referred thinking okay she was terrible but at least a psychiatrist or whoever will have a bit more of an idea of what they are doing. I wasn't referred to a psychiatrist I was sent a letter regarding cognitive behavioural therapy which was an opt in service and that was all.

So fuming I went back to the GP armed with the knowledge from NAS that he could refer me directly to an autism diagnostic centre, he was absolutely brilliant, he apologised for how I was treated. He called the gateway worker up, had a go at her saying she had no right or even the right credentials to diagose me. He then referred me to a specific dianostic centre in my area, few weeks later I got a letter and alot of forms/tests to fill in. Sent those back and was told I could wait up to 3 months but they had a cancellation about 2 weeks later, I went to the clinic and 2 hours later I had my Asperger diagnosis.

So don't take any BS from whoever you see, have you contacted the NAS to see if there is an autism specialist in your area? Get the info of the closest one to you, if they take GP referrals go back to your GP and ask for a referral if it has to be via a psyciatrist or similar professional then get yourself referred to one of them and then get them to refer you.

Good luck :)

@Goatworshipper: just remember one thing - only a trained psychologist can diagnose whether you are on the spectrum or not, and that is who you need to see. You may need to insist and possibly jump through some hoops (like seeing an 'access clinician', or even a psychiatrist), but just keep to the line that you want to been seen by a psychologist that is trained to diagnose (or, at a push, has some knowledge of) autistic spectrum disorders, and you will get to there sooner or later.

Basically, all first line NHS staff will attempt to make you think they're the ones in the driving seat - they're not - you are - you have the right to ask to see any type of clinician (within reason).

So I got my referal to see an "Acess Clinitian", does anyone know what one of those is? 

 Im concerned I'm meeting someone who is going to try and persuade me that I don;t need an assesment. The woman whom I was meant to see had seen my partner in the past, and was basically rubish. She claimed nothing at all was wrong with my partner, and didnt need any help. My partner ended seing the crisis team a few times that same week and eventually got a BiPolar type II diagnosis. Im not sure if this person's role is a "money saver" or they are just crap at their job.

So I requested to see someone else on the grounds my partner needs to come to help me and I need to be comfortable, which they were fine about. I didn't get into the why's and werefores. Unfortunately now need to wait till 12th June as a result.

Can anyone advise what is likely to happen in this appointment? I'm feeling quite nervous and that know one  will take any notice. The letter mentions assesing my needs, but not a diagnostic assesment.

Completely nervous and frustrated with this now.

I went to the GP's today. He referred with no hassle whatsoever. 

It took me 12 years to get a proper diagnosis. And it only all came out because i started skiving school at 16 and my mum found out. I then told her how much i hated it and the school were concerned with my remarks so sent me to the Dr who i confided in about self harm and a month later i was admitted to psychiatric hospital for the first time. I have been misdiagnosed twice and it took a further 6 years to have a professor assess me and properly diagnose me. I can understand your frustration but it's good you have insight into autism as we knew nothing about it at all until i was diagnosed last year. I hope you get help.

Anne.

After quite a lot of Doctor dodging I've booked in for the 27th april to see the GP about this. I've done some online AQ tests and keep coming out at 42.

Thanks for the advice, I've been over the links. My partner is coming with me and I'm going to take notes.

Thanks Again.

nonneurotypical said:

Goatworshiper, if you are like me, you will probably want to write down an explanation of why you think you should be assessed for Asperger Syndrome.

I did this and it helped. Unfortunately, some of the symptoms I have, I may also have due to other diagnoses. (or undiagnosed stuff in some cases) That makes it much harder and I have been told that this may make me difficult to test.