Terrified of Diagnosis Negative Result

Was waiting for sunflower to finish typing her reply.

well done glad it went ok and you now feel it will help you get support at work. Give it time to fully sink in.

I am just an interloper, not yet diagnosed, but feel I am amongst kind understanding people.

()

Hi James I am so delighted for you. I felt confident this would be the outcome but until those words are actually spoken none of us can be 100% sure.

You must be exhausted after six hours of assessment. At least you can rest safe in the knowledge that you are going to be able to ask for some changes at work.

Channel 5 News tonight had a feature on autism in adults which once again highlighted the woeful employment rates. From the same programme I learnt that  Macmillan has a dedicated employment advice line for people with cancer.

The same sort of dedicated employment line is needed for autistic people. The attrition rates from people ending up leaving jobs due to lack of accommodation must be terrible. 

Take it easy for the next few days if you can. My brain has been working overtime but I feel so much more relaxed and confident. I got my official letter today (thank you Royal Mail!) I feel like having it framed! 

Take care () = aspie hug

After over 6 hours of interview the practitioner came to the conclusion that I am definitely autistic

That is the result I wanted. It enables me to get the necessary adjustments made at work which will really help with my anxiety issues

I will get a full written report within four weeks and a follow up apontment to discuss the way forward

its a huge weight of my shoulders to get that finalised after so many weeks of waiting. I can now hopefully move forward in my life

Thanks Sunflower for thinking of me today, I was hoping you would be seeing as you knew what I was going through

James

Have been thinking about you today and hoping everything went ok at your assessment. 

my private assessment in July was £800, 1 month between referral and diagnosis appt. I declined to give details of parents/family and it was not an issue in me getting diagnosed

I was in a similar position with regards to my parents.  They live some distance away so completed questionnaires which my sister sent directly to the psychologist. My siblings also completed questionnaires and my husband emailed the psychologist to explain issues and challenges in our 12 year long relationship. 

I preferred to attend the assessment sessions on my own. It's a very individual thing - do whatever feels right for you. At the feedback session once I had been told my diagnosis and discussed some immediate concerns my husband joined us for the rest of the meeting. That was very helpful as the psychologist explained things clearly to both of us. 

Information about difficulties you are having now is just as relevant I feel. Psychologists are always keen to get some input on infancy and early childhood too, given the diagnostic criteria for autism. 

Good luck with the next steps whatever you decide to do. 

I went through something similar as the NHS (I live abroad) and although they made me wait for more than a year, I did have counselling every so many weeks. I paid nothing.

I took my husband to the interview because he knows me best. I couldn't take my mother (psychiatric patient) and my father is no longer alive. I did have an aunt and uncle fill out a lenghty questionnaire concerning stuff in my childhood. They knew me well back then.

I also had two separate two hour interviews in which I rambled on and gave a $&@" load of information.

Try not to worry too much and try taking one step at the time. I don't either but try. I thinknit might be an autism thing too to always see things in its enormity with all the options and consequences where others just sit back and let things happen one step at the time.

Good luck PINARELLO F8!

Let us know how it went.

I managed to get some councilling through Occupational Health during my 3 month wait

it was only 4 sessions over the phone but it helped break up the wait and gave some support

I first emailed the assessment service on 10 August this year. I was offered an initial assessment appointment on 8 October. The cost of this was £150. After this appointment I was sent a quote for a full ASD assessment which was another £1100. I haven't paid anything yet, I should get an invoice at the end of the month. Payment by instalments over six months is also an option. Leaving aside the time spent waiting for the assessment to start the whole thing took less than six weeks.

The process was very thorough indeed. I was in such a muddle that I couldn't come up with the kind of diagram you describe, even though I wanted to. There were so many moments in this forum when someone said something that made sense of my own experiences. I gradually got more confident about being on the right tracks. 

I was always trying to assess myself as well as being assessed! One of the psychologists pointed out very nicely that they would ask for the information they needed and I didn't have to take responsibiiity for second guessing this. I still found writing up my own history helpful and the psychologist said "you can never give me too much information" so I took her at her word. 

People properly trained and experienced in autism assessment can see behind masks. The process itself is very challenging so the mask tends to slip anyway. I got so comfortable with the psychologist by our third meeting that I could be my authentic self - rocking in the chair when I got upset and pushing the beads on my necklace backwards and forwards repetitively. 

Don't feel bad about not asking everything you needed to  of the GP. I spoke to mine on the phone yesterday with a carefully prepared script in front of me. I still missed out something important! Our GP practice has an email service so I will send in my query like that. 

We're still mourning our dog but his death gave me a wonderful gift, my autism assessment. We have a sweet little rescue dog as part of our family now. She is my weighted lap blanket! 

The stress and anxiety haven't gone completely since my diagnosis but I feel so much more at peace with myself and the world. In all the difficult situations I held myself responsible for previously there was a hidden factor, my autism. 

I worked on an autism project a few years ago and wondered about being autistic. Back then I concluded that I had simply adapted to fit in with the service users. One of them told me she was sure I was actually autistic. 

I completely understand your desire to get the assessment done without delay. You could opt for a one day or half day assessment. I found it less stressful knowing that I would be assessed by several different people over a period of time. The waiting was agonising but it was totally worth it in the end. 

Your cat sounds lovely. I have always had an affinity with animals and people who are 'the difficult ones'! 

I think was lucky having to only wait 3 months

I think waiting lists vary between counties. My county is Wiltshire and I was referred to Wiltshire Autism Diagnostic Services (WADS) they have a Facebook page. There is probably something similar in your county

My referral was put in on the22nd August and I am currently in the hospital car park waiting to go in for the assessment. So that’s just under 3 months wait through the NHS.

Its been challenging getting through those 3 months but it has gone quicker than I thought 

My 80 year old mother is attending the last two hours to fill then in on my early years

The staff must be pretty used to seeing autistic people and will see though any masking pretty easily so there’s no need to worry about them not picking up the signs

I've been reading that you should bring someone who's known you since childhood to the assessment but I can't decide who that should be.

My parents are VERY different people and divorced. One of them is very level headed and tends to play things down and the other tends to be over the top and critical. Part of me feels the one who is more over the top and critical is more likely to put across issues she can remember about me. On the other hand, maybe the more level headed one could be more focused but I fear they might want to play things down too much and not be too helpful for the assessment.

I don't really have anybody else I've known since childhood as I had trouble keeping friends though I would prefer not to have to drag my parents in and bring up too much of the past as I feel I had a bit of an upsetting childhood with them at times.

Really I just want to completely bury my head in the sand until some sort of positive outcome but that hasn't gotten me anywhere in the past. Maybe that's why bringing someone else would help.

My wife has only known me for nearly 5 years but of course spends the most time around me and notices the most but is that kind of reference wasted as it doesn't justify the "lifelong condition" criteria?

I just want everything to be final and get on with sorting things out... patience is not my strength with these kinds of things.

Roughly how much was your private assessment and how long did you have to wait for your assessment? I was considering seeing if my workplace's health cover might cover the cost. I know they have various benefits including talking to therapists of some sort but I think that's purely occupational therapy.

I wish I had asked more questions of my GP but I felt so stressed talking to her about it all that I just couldn't wait to leave. I had a lovely colour coded spreadsheet of my traits/tics organised by how much they affect me but didn't have a list of things I wanted to know which was an oversight. I think I got so hung up on justifying things that I forgot the reason for doing it in the first place.

A problem I have is that as soon as I identify a problem I obsess over it and want to resolve it so I really want to get on with things and have a positive diagnosis as soon as possible. Also, I want to take the advise on dealing with various autistic difficulties but I know the more I do that then if I get a negative response I'll feel awful like I've somehow "appropriated" a condition. I've definitely got some serious issues to the point that even with me mostly masking stuff around others they've all noticed things about me that tick boxes.

I do worry that when I get the assessment that I won't be able to stop myself from masking stuff and it won't be a true assessment. I've become so accustomed to bottling things up to the point of almost being a blank slate when I'm not overreacting to stuff impulsively in an effort to stop myself from coming across as ridiculous in social situations. It feels like an all or nothing and I don't want the assessors to see nothing of course which feels so counter-intuitive to me now. I'm kind of hoping that I just freak out a little as I usually show most of my "traits" when I'm stressed in unfamiliar social situations.

Sorry to hear about your dog, I find myself very attached to one of our cats (the difficult one) actually as it took a lot to get close to her and I think I might act similarly if something happened to her.

I think that's an excellent idea to take the time to write up memories as example. I feel that might make me feel a little more justified too. At the moment it feels as though I'm only just accepting I have an overarching issue rather than these separate quirks. I resisted people pointing out that they think I'm "on the spectrum" as mainly a matter of pride. It's also probably why I mask a lot of things as I'm so worried about being judged by others (especially things like my facial tics). I think if I was diagnosed positively it would almost give me permission to relax about these things and hopefully in turn not feel as stressed constantly.

I have just completed the assessment process and got diagnosed with ASD on Friday. The first enquiry I made was on 10 August this year so it was relatively quick. Even so waiting between appointments and then waiting for the final verdict was very stressful. 

With hindsight I would have asked for more information on timescales and made it clearer to the assessors that I was struggling with waiting and uncertainty. Only you can decide if it is worth the risk of going through the assessment. There can't be a definite conclusion at the outset otherwise it wouldn't be s proper assessment. 

You can of course complete AQ and EQ questionnaires - you may have already done so. This will give a broad indication as to whether you are likely to meet the criteria for an autism diagnosis. Reading first had accounts of being autistic written by other people of the same gender can be helpful too.  

Waiting times seem to vary depending on the location. I decided to pay for a private assessment as I needed to get it done quickly. Mine came at a time of real crisis in my life just after my beloved elderly dog died. Apparently that is not at all unusual. We don't always realise what a big part companion animals play in our lives until they are gone. 

I had an initial assessment in order to decide if ASD assessment was the right option for me. It was decided that it was. I preferred not to see the information my immediate family sent to the psychologist so this was an added area of uncertainty. To fill my time while I was waiting I wrote up memories from childhood, adolescence and early adulthood and sent these to the psychologist. Doing this made me more convinced that I was autistic as I could recognise lots of the traits in myself. 

Some places do assessment all in one day but I think I would have struggled with that. Time between appointments helped me gradually come to terms with things. Everything started to falll into place so by the time I was told I was autistic I had sort of worked it out for myself. 

All the very best to you whatever you decide to do. I am sure others will have helpful suggestions as well. It seemed to take ages while I was going through the assessment process but looking back on it now it feels like it happened in a flash!