ADOS assesment (Adult)

Goatworshiper said:

From my perents perscpective I could have an arm hanging off and they wouldn't see it. 

........that doesn't sound good :-( ........ why do you think that is? I am not sure if it is really any different than NT's but I have read about AS people who have both very good supportive relationships with parents and ones who have very bad relationships. Do you think either of your parents might be on the spectrum?

I had an initial assesment which we both attended, they (Pyschologist and team) decided to proceed. I then attended the a Cognitive assesment and ADOS assesment alone and my gf attended the developmental assesment alone.

From my perents perscpective I could have an arm hanging off and they wouldn't see it. 

Goatworshiper said:

I think that typically parents would give developmental history to the Pyschologist, however since my parents and siblings think I couldn't possibly have autism they would be unreliable and not giving reliable evidence. So my long term girlfriend (of nearly 14 years) give the information she had/knew/have access too hence the ammended part.

ok, that makes sense. My parents were not exactly understanding. In my case I think it was lack of knowledge and maybe some sort of misplaced guilt? Maybe they didn't want to except that I was 'different'?

Have you had an appt yourself with the Psychologist or is it just your girlfriend?

I think that typically parents would give developmental history to the Pyschologist, however since my parents and siblings think I couldn't possibly have autism they would be unreliable and not giving reliable evidence. So my long term girlfriend (of nearly 14 years) give the information she had/knew/have access too hence the ammended part.

I don't know about support in my area, i need to look into it. 

whats the 'ammended developmental interview'?

Goatworshiper said:

No idea when or what happens next tho. 

......I guess you will have to see a Psychologist to confirm the diagnosis?

......what are the  AS supoort services like in your area? do they exist?

My Girlfriend done the ammended developmental interview on Wednesday. She said they indicated I would be getting a diagnosis. No idea when or what happens next tho. 

It was a cube, a peice of string and a toy car. It was a random bag of objects which I pulled three out, there were other objects in the bag but mainly other shapes. I seemed to be about improvised role play like you say and developing a narrative. This is something I've never got along with, very similar to team building excersies that appear arbitary in my mind. 

I think working in research pyschology would be a really interesting feild to work in too. I'm interested in human interaction with sound (pycho-acoustics). 

Goatworshiper said:

Then they had a story book, where it started with words and went on to picture and I had to describe the story, again I struggled. The last task was making a story up from 3 objects which I just couldnt do.

I hope you don't mind me asking but what were the three objects? I am guessing they wanted to see how your imagination operated. What identity or relevance you placed on the objects and how that developed into a narative. I find these sorts of things really interesting and wonder if it would not be interesting to work in such a field. Trying to understand people through such research.

Personally I don't value employment as good or bad value, I view it as necesary means to an end to survive. However as so much emphasis is put on the value of employment it's impossible not to feel inadequite.  However I do agree there is a certain feeling of freedom and not being aswerable to the government.

I've lived on JSA in the past so there are always way's of getting by, but I'm sick of getting by if you know what I mean. In the past I've always used false hope to get me through hard times but I'm struggle to create any. I got through some awful jobs by thinking this is only to get me through uni, or this will all be over in so many weeks/months.

I can definitely relate to the feeling of inadequacy for not working. That is the main thing that gets me down now.  I know I am fortunate to get the benefitand not be required to work, and I am grateful for it, but I would prefer to earn my own living.  The way I try to look at is that if the work place was different and more accomodating then I would be able to.

Who says a person 'should' be able work 37 hours a week?  I think you are doing great working at all. Try not to compare yourself with NTs that don't have your sensitivities. Although your income is small it is still more than the benefit.  When I looked at DLA I thought it didn't apply to me but the psycholgist that diagnosed me said I should apply. I get the low mobility because when I go places I need someone to go with me.  If there are places an NT would be able to go but you cannot, on your own, then you may qualify.

Thank's for the advice guys. The fear I feel is probably worse than the reality, but I suppose that's the way governments want it.

My GF keeps on telling me I should attempt to claim DLA/PIP as elligibility does not matter if you work. I feel pretty inadequite (sp sorry) about not being able to hold a full time job down both in terms of self worth and financially, but I know that a full time job will lead to more struggles. I've worked full time before and it just didnt work, couldnt cope being around people and noise for 37hrs a week. I'm living on £700 a month but I spent over £160 on fuel (but i have car tax, insurance etc to pay too) and obviously living costs. I live in a town with massive unemployment and poor transport so I need a car to get out of town for both work and to relax, so getting rid of the car is counter productive. When I look at the criteria for DLA/PIP I don't seem to fit it, such as I don't need some one with me etc. 

I actually love my tasks in my job, although I don't like that there is no progression and the contact with people.

I agree with Scorpion, ATOS has improved a lot since ESA started and it wasn't as bad as I feared, though it is still gruelling. I didn't have to appeal either.

My tips are:

1.  Spend as long as you can on filling in the work capablity assessment form, ESA50, (you can download a pdf from the internet. I can add a link if you need it). This is not the first form ESA1 which is a (very long) more general benefit application form. On ESA50 give examples that are relevant to the questions from previous work situations as this helps the assessor imagine your difficulties. I ignored the fact that it said "everyday life" and made it work focused. I found that doing it over a period meant I had time I kept thinking of new examples. (having to work in a store cupboard is a good example but you will need to spell out why it is impossible to work in the office).  It is a bit of an upsetting process focusing on how difficult your working life has been. I summarised the main points covered in the questions in the summary. If you have trouble with it ask CAB, (as Scorpion suggested).

2. If you have problems using the phone then in the space for the phone number say you will not be able to deal with a phone call and give a number of a friend if possible and an email address.

3. In the space near the end where it asks if you have any special requirements for the interview say you want someone who knows about Autism Spectrum.  This made my interview so much more bearable.

4. Get two copies of the report from the diagnosis send one with ESA50 (I sent everything through the post so I did not have to go to the job centre, the recorded delivery charge was £7!!) and take the other with you. If you have had any 'therapy'/support get a letter from them too.

5. If possible get someone to go with you.

I wouldn't wait until it is urgent before you look at ESA50.

The assessor is not an expert on AS - he/she can only know what you tell him/her.

Goatworshiper said:

I wouldn't get on the sick, if I did I'd get hammered and have HATE-US (aka Atos) chasing me.

I used to think that, Goat.

And before ESA came in it was probably true.

However, I did go throught the hell of claiming JSA and getting sent on pointless courses by the JobCenter that just made me worse, and worse to the point where I had no choice other than to claim ESA.

Now, getting through the assesment and appeal wasn't easy, but I did with the help my Mum and the local CAB, and I'm now on ESA, get DLA, and most importantly I don't have ATOS 'chasing' me!

I hope it never comes to this, but if you do become a 'victim of austerity', well, hopefully you'll have a diagnosis before then, but either way, go to your local CAB and get help from them to claim ESA, and to get through the assesment and probably inevitable appeal, and then claim DLA (if these things even still exist then).

It's really not as bad as some of the horror stories you hear would make you think (that's not to say it's 'good' either, but you have to remember that the media exagerates isolated incidences to make it seem like they're the norm, when more often they're not).

The test itself seemed acceptable in what it was trying to acheive (social cummincation and imagination etc). I do agree that it does not pick up on work related difficulties, in all honesty I could probably do with pouring my heart out a little bit to them, but I never do that kind of thing in public especially to people I don;t know. I find a lot of my life confused by instruction due to not interacting like others doo. I've moved into a storage cupboard at work as it's easier than sharing an office with people who I dislike.

Anger-wise I've always had a bit of fire in my belly, but lately I feel constantly frustrated with it. I'm guessing it's causes are lack of acheivement and social injustices. I'm 30 and I think I won't get any further in life, due to finance/Autism/Dyslexia (if its not autism I definately have an unspecified problem) related difficulties.  From a social injustice perspective the government are just getting to me, I current work part time but my job is at risk with it being public sector, if I lost my job I couldn't afford not to go to the job centre. Job centre would torture me with pointless courses which would make me worse etc. I wouldn't get on the sick, if I did I'd get hammered and have HATE-US (aka Atos) chasing me. I also feel aggreived at public school boys doing well as a right of passage. I suppose I'm in a poverty trap with very little hope As a protest to the government I'm looking to purchase a black triangle armband that the Nazi's made "a social/work shy" prisoners wear in the concentration camps and wear it whenever I enter a goverment building.

I also do and always have not got on with the mass populus. 

I have not come across these tests. I didn't have any tests as such as I had sent a 9 page report from the psychologist.  Sounds like they were testing your social understanding, sponteneity and ability to engage in social conversation.  Well it was more appropriate than been asked to squat or lift your arms up like someone else got.  My only reservation is that it doesnot capture the difficulty in communications over work instructions and how these misunderstandings build up over time, but I don't think it is possible to create a test for that.  I am hopeful.

Depression is often anger that is turned inwards instead of outwards. Is it having to jump through all these hoops that is making you angry? I found it a really stressful process. I was afraid of what would happen to me if they turned me down.

It was an awful 2 weeks waiting for the letter. Try not to think about it, there is nothing you can do about it until it arrives.

That does sound odd. I guess for anyone making a story up from 3 objects on the spot in that situation would be tricky.

Had the ADOS assesment this afternoon. It was a bit of a weird one, the nurse give me a spatial task that took about 30 seconds. Then the nurse showed me a picture of America with lots of cartoon drawings on it, such as an oil min in texas etc and I had to describe it, I thought that was easy. That led to them trying to have a conversation about holidays with me, which didnt go quite so well.

Then they had a story book, where it started with words and went on to picture and I had to describe the story, again I struggled. The last task was making a story up from 3 objects which I just couldnt do.

No feedback, not sure what it means. Apparently there is a letter in the post with my last diagnostic date, then they'll feedback.

Cheers Jon.

Cognitive assesment seemed to go ok. I said preliminary I had average to just about average IQ, but need to anaylyze the stats properly.

ADOS is on 11th Feb now. 

I havn't been very web active lately, in the summer I got a dog which takes up a lot of time. I've also been in the gym a lot, trying to be proactive. But I've been angry (no reason for it, but I just feel a bit adrift, anger is getting worse with age), so I havnt spent too much time on forums as I've been a bit snappy and hence out of the loop.

I'm glad you've finally got your diagnosis. Hopefully it sink's in and works out for the best. I'm looking forward to understanding more about my personality whatever way the diagnosis goes. 

Hi Goatworshipper,

How is the process going?

I finally got a diagnosis a couple of weeks ago and I am still trying to get my head around it. (A year ago I think I would have just been relieved but its been a massive struggle to get here that I haven't been thinking beyond the diagnosis for a long time).

Because we both seem to have been trying to navigate the glorious NHS for the same purpose and at a similar I just wanted to say that I hope you get some answers and I will be following your updates.

Take it easy.

The other thread has drifted off topic so I'm going to put some other stuff on here.

At any point during the diagnostic process will I get the chance to expess how (I think) I think differently to others, as this is what isolates me. I tend to think objectively but sometimes radically too.

When I had a cognitive assesment I was asked if I was ever depressed and I said no, but I came away feeling I should of mention that I feel very isolated. But I prefer to be isolated than be around others because others make me feel uncomfortable. Argggggggh. Strange paradoxial world i find myself living in.

I don;t ever think about ending my life, but I do feel sad when I have to go to work or interact with people. I feel like I need the toilet a lot and want to sit infront of a fire when this happens in winter.

(maybe should have put this in the "not knowing how I feel thread"?)