Ongoing assessment saga

ASC is my formal diagnosis (received a few years ago.) The diagnostic categories aren't split into Aspergers/Low-functioning/High-functioning etc. like they used to be; the aim being to reflect that there are huge grey areas between them (though it's still quite a controversial change.)

When they fill in the details at your follow-up session, what should be indicated is what kind of support you're considered to require. Sometimes this is given as a "level" (1 = minimal support, 3 = 24 hour care), but in my case it was more of a narrative kind of thing with specific areas highlighted.

JohnS said:

So it looks like the saga has ended or has it ??

The end of one saga and the beginning of another for me; though it's very variable depending on what services are available where you live. To date none of my identified support needs have been put in place - I seem stuck in limbo between mental health services and social services, neither of whom really offer the kind of support that I need, and they have tried to pass the buck back and forth several times. On the other hand, having the whole question of my diagnosis settled has made it easier to do things to help myself, assisted along the way by the support of people in places like this one - there are a lot of improvement that can be made without official interventions.

I'd recommend taking a bit of time out to reflect about your diagnosis, unless that would mean missing an opportunity for support that's offered at the follow-up session, or you have a pressing need to disclose to anyone in authority. Giving your mind a break from the stress, and letting things sink in a little bit, is better than trying to jump into things too quickly, IMHO.

Gosh you've really been through it. I feel very lucky that my private route was so easy. I chose not to bother with the screening, paid for the ADOS and DISCO, they came to my house, spent 4 hrs talking to me and my Mum, did the tasks you described, then told me there and then. 

Your path to diagnosis sounds very stressful but I think ASC is now the name they use for what was ASD or just Autism. Asperger's is no longer used as a separate diagnosis.

Indeed :) And about time too :) 

It sounds like it's reaching a conclusion! Hope you get the answers you're looking for tomorrow.

At last I now have the result of my private formal assessment and the result is.. I meet the diagnostic criteria for an Autism Spectrum Condition (ASC) ??

Now I'm not sure what this really means, but I will find out tomorrow at my final Q&A session with the Psychologist.

So it looks like the saga has ended or has it ?? 

After going through the contradiction of NHS screening and cannot get a second NHS assessment then I have gone private with the screening (EQ and CQ questionnaires) proving I'm needing further assessment (later this month).

So maybe, after all the mess of the NHS then I will finally address the contradictions before Christmas.

I should also note that my anxiety has been getting worse as I get older and none of the common drugs seem to be working anymore, resulting in me getting a lot of Migraines. The latest drug I was given was Escitalopram but that has made me put on weight and makes me very sleepy all the time :(

The process was because I had issues at work (plus my son was recently diagnosed with Aspergers) and the money is spent now. Initially, I wrote all my issues or "quirks" as I called them and gave them to my GP - just to see if he could get someone to look at it to see if I needed to seek further help. But after 6 months of trying (because the adult mental health service in the Fareham area were as he said "non existant")  - I decided to go private. The 1st stop being a Psychiatrist..etc etc

Hi T - She just dropped all the pieces in a pile next to the outline?? Yes come to think of it there was also a picture of a whole lot of people having an outside dinner. All I really noted was that trees looked like were from Tuscany, so I guess it was supposed to be in Italy. The Psychologist thought the same and apparently, I was the first person to comment on the trees - I didn't make any comment on the people or their expressions at all ?

At the present time I am going through the diagnoses pathway with my daughter.

Your post just confirms my experience and research.

That there are few specialists overall and seeing anyone privately could be a costly mistake,

I just wonder (and excuse my ignorance) but do you actually want a formal diagnoses for a specific reason John?

Have you thought about reframing how you look at your situation. Could it be helpful to write down what are the areas where you need to work and then find a qualified person in that specific area. So for instance anxiety but be at the core of everything..so making that your first area work. Also you could try many ways of helping yourself that are inexpensive compared to wanting to have a label and spending a lot of money and being no better off. 

JohnS said:

The first test, was to put some "W" shaped foam pieces into an outline on a piece of card

Second test was a picture book (no words)

Hi John, it sounds like you had the ADOS 2 module 4 test or at least some parts of it. The first test is to see how well you communicate e.g. you are supposed to ask for more pieces of the puzzle not just drag them out of the hand of the assessor as I did. The book with no words checks your imagination, emotion identification, plus a few more neurotypical behaviours. I just looked at the pictures and said what i saw, e.g. didn't pick-up facial expressions, obvious links in the story and another 1,000 points that can be inferred. 

Regards T

OK so time for an update !

I have had my observational test which went sort of OK (I think).

The first test, was to put some "W" shaped foam pieces into an outline on a piece of card, which was pretty easy. Although without realising it, I fitted all the orange ones on the outside and the blue ones in the middle, making it nice and symmetrical :)

Second test was a picture book (no words) The first page was a boy sleeping in bed with a book next to him and I was asked what happens next. 

I shrugged and said he wakes up?? But I was told I was supposed to turn over to next page and following pages to describe was was going on. It was clearly some sort of dream, but made no sense. In the end I just gave up and the Psychologist finished it off. 

Then I had to pretend I was brushing my teeth, which was easy as I do this twice a day the same way over. I think I was giving a running commentary on this.

Finally, was the make a story from some objects. I can clearly remember all the objects and word for word the story the Psychologist made up - I was tempted to put her straight on a few "holes" in her story but resisted

She made it easy for me, because I had just driven for over an hour to get there and I had travelling on the brain. I was allowed to pick my objects from the bag containing two rubber bands, a small 9 of hearts playing card, a maroon toy car, red spiky rubber ball, lolly stick,green wooden cube and a white card disc. 

Of course I took the car and square immediately and said a man leaves his house, drives down a road (Lolly stick) and as he goes around the roundabout (white card disc) forgot his spiky ball and returns home to get it - the end. The Psychologist said I did better than most. 

BUT if she had given me say the cube, rubber bands, ball, disc and playing card to make a story -  I would not have had a clue what to say ?? And this has bothered me ever since.

Next session is with my wife and I on the 13th Aug, where my wife will be interviewed for an hour and me for 2 hours. Then the two Psychologist's will confer and give a diagnosis or not?

Trouble is my wife doesn't believe I have ASD, but says I have changed since the Psychiatrist said he was 95% sure I had Aspergers. yet when we both took the AAA  test, and we both score really highly. My wife thinks that she could be on the spectrum (we think her father definitely was) but is happy to live with it.

God know what I will do if they say I don't have ASD - I did have an initial session to determine whether it was worth having the full assessment (costing > £1500) and I was told it was definitely worth proceeding, if I thought it would help me. 

Now I'm not so sure what to think :(

OK so time for an update !

I have had my observational test which went sort of OK (I think).

The first test, was to put some "W" shaped foam pieces into an outline on a piece of card, which was pretty easy. Although without realising it, I fitted all the orange ones on the outside and the blue ones in the middle, making it nice and symmetrical :)

Second test was a picture book (no words) The first page was a boy sleeping in bed with a book next to him and I was asked what happens next. 

I shrugged and said he wakes up?? But I was told I was supposed to turn over to next page and following pages to describe was was going on. It was clearly some sort of dream, but made no sense. In the end I just gave up and the Psychologist finished it off. 

Then I had to pretend I was brushing my teeth, which was easy as I do this twice a day the same way over. I think I was giving a running commentary on this.

Finally, was the make a story from some objects. I can clearly remember all the objects and word for word the story the Psychologist made up - I was tempted to put her straight on a few "holes" in her story but resisted

She made it easy for me, because I had just driven for over an hour to get there and I had travelling on the brain. I was allowed to pick my objects from the bag containing two rubber bands, a small 9 of hearts playing card, a maroon toy car, red spiky rubber ball, lolly stick,green wooden cube and a white card disc. 

Of course I took the car and square immediately and said a man leaves his house, drives down a road (Lolly stick) and as he goes around the roundabout (white card disc) forgot his spiky ball and returns home to get it - the end. The Psychologist said I did better than most. 

BUT if she had given me say the cube, rubber bands, ball, disc and playing card to make a story -  I would not have had a clue what to say ?? And this has bothered me ever since.

Next session is with my wife and I on the 13th Aug, where my wife will be interviewed for an hour and me for 2 hours. Then the two Psychologist's will confer and give a diagnosis or not?

Trouble is my wife doesn't believe I have ASD, but says I have changed since the Psychiatrist said he was 95% sure I had Aspergers. yet when we both took the AAA  test, and we both score really highly. My wife thinks that she could be on the spectrum (we think her father definitely was) but is happy to live with it.

God know what I will do if they say I don't have ASD - I did have an initial session to determine whether it was worth having the full assessment (costing > £1500) and I was told it was definitely worth proceeding, if I thought it would help me. 

Now I'm not so sure what to think :(

It really is a saga isn't it? Do keep us updated!

OK next step passed ie consultation with a Psychologist, who has now recommended me to have the two part assessment. 

So, part 1 involves more targeted questioning and Part 2 involves performing some tasks (with a different Psychologist).

So hopefully, by the end of August l will know one way or the other?? 

I was referred for assessment by my GP nearly two years ago. I had a letter recently from the NHS just saying we will get to you sometime soon no timescale or anything. I was beginning to think that going private was the way to go to get my assessment, now I am not so sure.

I would not meet the criteria of DSM-5.  I also demonstrated skills and strengths incompatible with someone with Autism.

What were the conclusions given as to why they thought you were not Autistic?

Hi

I was reading your thread with interest.

I have a daughter who fits all criteria for aspergers.

We will hopefully be at final diognoses soon.

Taking a step back and looking at many posts it just seems that recourses in the NHS are not there.

Many people working very n the autism services sector employed by the NHS are poorly trained.

You've gone the private route as anyone in your position would and to be honest it seems there's no clear pathway private or NHS.

I don't know if this would be helpful but as far as my daughter was concerned I change doctor's until I found a doctor that was experienced with ASD and had ASD in their own family or in surgery.

if someone wouldn't give me the time of day I just left them to it and politely said thank you and moved onto the next doctor until I found one that would listen.

It shouldn't have to be like this..but it is.

There's just no consistency. My son was assessed by one Psychologist at Cams and got an official diagnosis letter (which he has used to claim University help).

In my case I saw a Private Psychiatrist but he said a diagnosis letter from him would not be enough, hence the need for a second opinion from a Psychologist. The trouble is nothing had happened for 6 weeks (until I chased the Psychiatrist) and the Psychologist had received the referral letter but needed a password to open it. I will see what she says when she has read it but I don't see why I have to go through the assessment as I would have already seen a Psychiatrist and a Psychologist for over 3 hours. It would make sense for me for them to confer of my case, without dragging overs in. If she insists on another consultation and then the £1500 assessment, I'll go back to the Psychiatrist and request an alternative option. It's not the cost so much but the time. Although I could end up paying ~£600 with one saying yes to Aspergers and one saying no!! As you can tell its already starting to take over my life :(