Had first interview by adult autism team today

I suspect that the stories you have just told are much more relevant to identifying ASD than the teachers bland comments about inattention. I think that the people doing the assessment would be interested to read these recollections and any more similar stories that you can remember. These stories make perfect sense to me but are likely to sound "odd" to many people. If you can provide more detail of how you think or behave differently then you should be closer to diagnosis.

Hah! Interesting you should mention being picked for teams. I hadn't though about that until you mentioned it. This was always painful as I was always among the last to be wanted.  I wasn't friendless but I usually had one good friend at a time. Other kids I knew weren't friends, more acquaintances.

I remember thinking, when I was about 9, that they ought to give everyone a book of rules at school.  When I found out that there was a school rule book I sought it out and was frankly appalled when I read it. They ahd left almost everything out as far as I could see. There were obviously numerous rules for what to say if somebody says such and such a thing, whether you need to reply or not - all sorts of rules about social behaviours that I had clearly infringed without knowing until it was too late. But nodody ever explained why whatever I'd done wrong was wrong, it was as if I was somehow simply expected to already know.  It baffed me that everyone else did seem to already know. If I asked how I was supposed to know, but nobody even understand the question. I would be shouted at and punished for insolence.  I hated school with a passion, increasingly so from the age of about 10 until I left at 16.

I was always collecting things - stones, fossils, coins, matchboxes, anything foreign such as foreign sweet wrappers, *** packets, tobacco tins, toy cars and lorries (especially lorries), bottle tops, anything old and interesting. I knew the names of all the American cars and would say them as they drove by, when we lived in New York, so that would have been before I was 3. I soon learned all the British ones when we came here.

I still don't understand why she dismissed the school reports though. I'd have thought they give quite a picture of attention deficit if nothing else.

Technophobe23 said:

What really baffles me is her dismissal of my school reports. I've looked through them again, and to me, they couldn't give a clearer picture of a child who just doesn't 'get' the point of school - which is exactly how it was for me. If something caught my interest, I'd show interest, keenly. But unfortunately for those who knew what was best for me, that was more often something going on out of the window, or in my own head, than what they were trying to teach me.

They may have described someone who doesn't get school but there are lots of possible reasons for that. if they had mentioned any obsessional behaviour, rigidity of behaviour and thought or difficulty in forming friendships or working co-operatively with peers then they might have been more useful. What memories do you have of primary school? Did you have lots of friends at school - were you popular and did you get picked for team games by your peers?, what hobbies or interests did you have

What people have said in the above few replies is good to know, thanks everyone.  It is interesting that the general impression is that third party evidence of childhood behaviour is not any kind of strict requirement. That is not the impression given by the psychologist I saw.  Racking my brains to remember it more clearly, I think she might have said that she couldn't make a FULL diagnosis without such evidence. I guess that could mean a vague diagnosis such as 'probable ASD' or similar?

What really baffles me is her dismissal of my school reports. I've looked through them again, and to me, they couldn't give a clearer picture of a child who just doesn't 'get' the point of school - which is exactly how it was for me. If something caught my interest, I'd show interest, keenly. But unfortunately for those who knew what was best for me, that was more often something going on out of the window, or in my own head, than what they were trying to teach me.

I have the chance to write her a letter which she has said she will read before we meet again on 14th Jan. So that seems promising, and I'll explain all my misgivings in that.  I'll have to be honest and tell her that I think she ought to make allowances for the fact that I've got through nearly 56 years of life so far, and on the way I have taught myself a lot of coping strategies and developed quite a skill at acting as I've learned is likelyy to be how others expect me to act.  I was very different as a child. And as others on here have said, even my mother is unlikely to be more than vaguely aware of how things were for me back then, as I tended to be secretive, and rarely spoke about my problems.

Anyway, thanks to all for your responses, they have been very helpful.

Parental information has to be optional as has been discussed. Information from childhood is still desirable as they want to differentiate between a lifelong permanent condition and an acquired condition. This is important for the doctors to know exactly how to treat you - they have to know that they should not try and eradicate the condition and they have to be able to prescribe appropriate assistance.

Another reason for them wanting to be confident of their diagnosis is that autism qualifies as a disability under the Equality Act. They may feel that they need to be confident in case the DWP or anyone else decides to challenge the diagnosis. They have to be able to demonstrate that they performed a complete diagnosis and the childhood experience is part of that. I wonder if it might be sensible to give a diagnosis of "probable autism" when they are unable to satisfy this standard of evidence.

In my own case, I was able to tell stories from childhood and adolsecence etc about things that had puzzled me or made me anxious. There have been a number of odd things that I was previously bafflled by that now make sense in the light of diagnosis. Examples were being told off for things that made no sense to me, hating going to parties because I never understood what the rules of the games were and I got no enjoyment from being with loads of other children doing non-sensical (to me) things.

So, in my case, parental evidence was not required - either the evidence that I was able to offer was sufficient or I am so barn-door obviously autistic that the doctor had no difficulty.However, having survived for 56 years without anyone saying anything I think it was my evidence of eary life that was satisfactory.

HTH

Hi dogdude. This subject has arisen before, so I'll try to repeat what we said then.

This business of parental information is a red herring. There are many people who can't or won't supply that information for a variety of reasons, and it isn't necessary.There are people whose parents are dead, there are people who are estranged from their parents and don't want them involved.

As an adult, you should be assessed in your own right using available information, so whilst parental information can help to inform the process, it is by no means a requirement, and anyone claiming otherwise needs to be told as much - it's an excuse (and a poor one) that others have been given.

The truth is that parents often don't see or remember the little things that are telling. My own Mum, when she was alive, just thought that I was a bit odd sometimes but put my eccentricity down to my 'intelligence', she had absolutely no idea of the things I suffered as a child. In a way, her disinformation on my childhood could have been very damaging to my assessment - like most parents everywhere, she would not have admitted that anything was wrong with her child. We still have interaction now on here with parents who cannot accept that their close relationship with their child blinds them to the truth - they see what they prefer to see, rather than the reality.

The most important information they need can only come from you, and that can only really be explored by a professional with specific ASD training, the subleties are beyond 'general' practitioners. Any extra information from others may be helpful but isn't required or strictly necessary.

yes they are rather insistent on talking to parents, youd have to be able to give very very good reaosn to why they cant talk to them. As for the questionnaires i mentioned, there were alot of these handed to me on the first appointment with a proper autism specialist(rather than the normal psychologist), there was one about sensory issues, there was stuff about childhood, there was stuff about coping in day to day life, your personality, etc etc and compare with childhood(every point ended pretty much with a quetsion like "has it always been like this" or something like that). But for that youd have to get the psychologist to refer u to the porper specialist. (in my case too, the psychologist just asked loads of questions, did some funny tests waving his hands about etc, perhaps to see if i pick up on non verbal stuff, idk, didnt understand anything, but said ok to everything just in case, lol. But in the end he just said im "probably" on the spectrum, but he doesnt know alot about it nor is he a specialist in the field, then referred me to someone specialised in autism). The questionaires i had to take home and fill out, took me days, esecially the one with the more open ended stuff where you actually had to write the answers rather than draw X marks in the boxes. Then next appointment had to take them back So she could check them and discuss it and ask further questions etc(probably helped that i decided to type the open ended one in the computer and sent via email rather than having her try read my handwriting, it tends to be rather unreadable. So that one she had read in advance and gave feedback to well before my actual appointment)

Hope its OK to resurrect this old thread?  It is very interesting to me because I have many of the same worries as the original poster (and others on here).  

I had my first assessment appointment a few weeks ago. I felt that the psychologist was untrustworthy. I couldn;t figure out her motives. It was as if she was trying to catch me out. It felt like being interviewed by the police (albeit very politely!).

I was aksed to perform some childish tests. I had taken along my school reports and showed them to her just before the end of the session. She glanced through them and asked me a few questions as if I was still at the school (I'm 55!). I took the reports because I thought they gave a great illustration of how I was always being criticised for not paying attention, lacking concentration, daydreaming, not doing my work, messing around isnstead of working etc etc. What worried me was that she said, having looked at them, that they didn;t give here any evidence of how I was as a child and she couldn't make a diagnosis without evidence from my childhood - she said words to the effect of: "Aspergers is a neurological condition, not a pathology".  Well I knew that, but her saying it implied that she thinks what I have is a pathology.

She said that unless she could speak to my Mum or my brother, she couldn't make a diagnosis.  She has given me another appointment for 14th January.  I have spoken to my Mum about this and she would be willing to speak on the phone to the psychologist, but not go to the hospital (she's 85 and can't walk well).

That's good. But the thing that's bothering me is that others on thsi thread (and elsewhere on the forum) say they didn't need a parent or anybody from childhood to give 'evidence'.  Also - and even more confusing to me - people have referred to a questionnaire. What is this questionnaire? Why haven't I neen told of these options?

Any ideas and information would be very welcome. Is there a link to this questionnaire?

hello. I too think they are a bit slow with all their appointments and stuff and extremely focused on early childhood, although there are options without having to have them to ask the parents. I had requested a diagnosis last year via my gp as thats what seemed to be required everywhere, didnt have my first relevant appointment till december, where i was told i am "probably" on the spectrum, but was told further appointments will be required with more appropriate specialists, as i think the first person i was referred to was probably an ordinary psychriatist or something. Next appointment was sometime in march, and the first follow up a few weeks after, where i got the diagnosis confirmed. They did request whether or not they could talk to my parents about it, but gave up on the idea after i explained my parents barely knew me, including early childhood as me and my sister had ever-changing nannies looking after us for most of the early years(constantly changing as werent able to cope with us apparently), also they long split up and dont even live in the same country, so wont be able to come for a face-to-face appointment, and i dont necessarily want to have to bring up the topic with them anyways. Therefore i just had to fill out the quesionnaires by myself, and that was more than enough apparently as i got the diagnosis before they even read the last lot of them:) So it is possible to do it without parent involvement even if they are still alive. (i am only 25)

You would think they would be a bit more accommodating considering the amount of stress the whole process creates not to leave it hanging for so long..

I was diagnosed last year 46 year old and yes my childhood played an important part of the asessments. I was lucky though as had CBT the previous year and self referred me to another lot and it was that psychologist that identified something was really happening. As many adults will probably say, I was definately misunderstood as a child. I had other health issues anyway. At sixth form I was very nearly expelled (was asked to leave) through arguing back with tutors etc. Growing pains were definately that and no wonder if was contending with autism too and it wasn't recognised in girls then.  I really struggled and there was enough evidence and my mother provided more. Looking back it makes sense to me now.  By the way, I refused to read anything between the referal and assessments. I wanted to make sure I was going in totally unread about it. I had no idea what happend at the asssessments. Information had me prepared for mum being at one of the sessions. I had two assessments. Then was invited back for the diagnosis which included a mini assessment from the Psychologist himself.  I spent the last year learning how it affects me and some kind of strategies to put in place and the people around me to understand what is happening. I think I am still learning as well as the people around me are still learning of how to help me when difficulties arise. Sometimes I notice and sometimes I am sure I am not noticing as such. But it is nice as with the right help one isn't being misjudged. It more what people do around us rather than what happens in an NHS appointment. But it helps when we can let people know have autism. It not a lable that ties you down it a lable that frees  

I think they have different diagnostic tools they can use if no one is around that knew you when you were wee. Now I have been diagnosed it turns out I was just having trouble second guessing what was going on and now the process is over I'm ok. It is a hard process and makes for a stressful few months but looking back worth it(though I was only diagnosed yesterday so hopefully will help long term).

good luck and don't be put off if you think it will help you.

Thanks everyone turned out I was getting things very out of proportion in my head. I got my diagnosis of Aspergers yesterday and feel very relieved. To all seeking a diagnosis it's not as bad as I thought at the time looking back I just got very panicky with the waits between appointments. It is definitely worth doing.

Re assessment, you have renewed my fear that diagnosis is beyond my reach. They would have to hold a seance to speak to my parents.  Even when alive they would not have spoken to anyone for me, they hated talking to outsiders.

Re friends, to me, a friend is someone you know well and see regularly, on a voluntary basis. I know a lot of people who I see regularly, but I tend to think that they put up with me in small doses, I could not claim to know any of them well. They are, therfore, acquaintances. True friends are a rare commodity in the modern world at the best of times, but I would say that I have none at present. I do enjoy the companionship of my numerous acquaintances, but need to be careful. A true friend is someone who likes you as you are and accepts who you are.

Michaela,

I think your definitions of friends agree with my own. Perhaps people with ASD are extra fussy and discriminating about who we count as a friend? Personally, I wouldn't use friend to describe "an acquaintance from outside work who I don't like that much".

I think I probably struggled to like my parents' friends' children and my cousins too. Perhaps this is because we didn't choose them so why should we like them?

I'm heading into the diagnosis process myself but I'm lucky that my mother is fairly supportive.  (I haven't told her i'm going for assessment, just that they are looking into parents history because my son has ASD).  It was her who suggested, about 10 years ago and before I had my children, that I may have HFA / Aspergers.  At the time I disagreed because I was offended, but the more I learn the more I think she is correct but just expressed her opinion using odd examples of traits ("small neat ears" rather than "solitary with special interests" for example).

Anyway the reason i'm replying is something she said about my "friends" in childhood.  She said lots of children thought they were my friend, but I thought I didn't have any friends.  She said I didn't know what other children were "for" or what the point of playing with them was.  There were school peers, and there were children of my parent's friends who I saw outside school, and there were cousins / siblings.  To me they were all different and none of them were "friends".

Looking back, I couldn't comprehend a definition of the word "friend" and thought there was some sort of threshold a person needed to cross before I could use that word.  Perhaps that I should have a desire to spend time with the person and interact with them, and that desire should be mutual, and there should be evidence of time spend interacting.  I didn't have much desire for interacting so I didn't think I had any friends. 

Now I have more understanding I know that adults use the word in a way that isn't strict or consistent, and I can use it in context appropriate ways (although I still struggle to use "friend" when I mean "acquaintance from outside work who I don't like that much but don't want to explain to you the details of how I know them")

All that is a long winded way of saying perhaps that perspective helps you think about your childhood "friends" and explain it to the assessors?  Then you could give a personal perspective as well as relying on your parent's recollections.

The relevant point there is that you said that you had "a friend" rather than you had "loads of friends". NT people think this is strange. Personally I have a small number of friends and I am quite comfortable with that, I don't  feel the need to fill my house every Friday night with 20 people for a rowdy party but am very comfortable seeing our close friends once a month.

Thanks recombinantsocks that makes me feel a bit better. Just wish I could remember more stuf from when i was little. The fact I had a friend seems to be a problem but I do remember a lot of arguments about them not playing how I wanted.

dogdude said:

Thanks guys I did do the AQ test and brought it to the GP when initially I went in but he didn't pass it on. I think I scored around 42. I'll do it again and bring it to my next appointment. I am having a lot of difficulty thinking of specific situations from early childhood. I think I need to write down all my symptoms for next time. I have issues with reading peoples moods and contsantly think people are annoyed, or I read their body language in a way that makes me think they are annoyed at me. This causes arguments with my partner a lot. He is having issues with the fact I did have friends but I was always the odd one out and tended to sit on the sidelines and observe in any kind of group. I'm the same today prefering people one at a time as i tend to just sit in silence and not participate in groups as I find it overwhelming and stressfull. My eye contact is terrible particularily if I am nervous or under bright lights.

Most of my anxiety comes from thinking people are angry or I have been rude accidently. For example in work if my boss talks to me I get nervouse and accidently talk over him and sometimes if hes making small talk I will say something irrelivant desperately trying to think of something to say. I then, unsure of whether he is finished sometimes just say bye and walk away, as Im so uncomfortable. I then worry the pause was because he was waiting for a response to something.

If i think my partner is annoyed it makes me intensly uncorfortable and I cant relax and will get stuck in a loop of asking whats wrong and worrying and she really struggles to convince me shes not annyed and it can escalate into an argument quite often which can then go all the way to meltdown.

If I ever drink in company the anxiety can last weeks. So i tend to not.

I'm really worried the doctors mind might have been made up from the first interview and I might not get the chance to explain better. I wish I could stop going over it in my head as my next appointment is in April.

Thanks for all your replies its good to get some perpective from others.

As I understand it, (I'm not a doctor!) these are exactly the types of stories that should make it very obvious that you have ASD. If you can think of similar awkward situations from when you were younger then it might help. You could print out this thread and take it with you and show them.

The AQ test can be useful for getting you as far as you have got but it probably doesn't carry much official standing.

I think that the fact that you have another appointment means they are taking it seriously. You are probably having difficulty working out their intentions - this is to be expected if you have ASD after all!

stateofindependence said:

Hi Dogdude, I am in a similar position as you. My mother wouldn't cooperate when I asked her to complete the questionaire, so have little evidence. Have spent so much time digging up stuff that is really painful, have pages of stuff I think is relevant (could write a book) but I don't know if it will fit in their boxes, and am also scared of the fallout. Am doing this on my own and don't have much of a support network.

Am trying to tell myself that whatever happens there is no magic pill, and whatever the diagnosis I am going to have to make some sort of effort to deal with things. 

Good luck anyhow!

Hope it works out OK for you. Some things I think are relevant but to say everything would take many pages. The doctor asked about lining up toys and when I was wee and I said i dont think I did that. Thinking back I did used to place my prized possesions and sit accross the room and kind of obsess over them while stimming. I wonder if that is related. For example a toy that was my favourite or later my zx spectrum, or even later my guitar. Its so hard sometimes to think of everything at the time.

All the best

Thanks guys I did do the AQ test and brought it to the GP when initially I went in but he didn't pass it on. I think I scored around 42. I'll do it again and bring it to my next appointment. I am having a lot of difficulty thinking of specific situations from early childhood. I think I need to write down all my symptoms for next time. I have issues with reading peoples moods and contsantly think people are annoyed, or I read their body language in a way that makes me think they are annoyed at me. This causes arguments with my partner a lot. He is having issues with the fact I did have friends but I was always the odd one out and tended to sit on the sidelines and observe in any kind of group. I'm the same today prefering people one at a time as i tend to just sit in silence and not participate in groups as I find it overwhelming and stressfull. My eye contact is terrible particularily if I am nervous or under bright lights.

Most of my anxiety comes from thinking people are angry or I have been rude accidently. For example in work if my boss talks to me I get nervouse and accidently talk over him and sometimes if hes making small talk I will say something irrelivant desperately trying to think of something to say. I then, unsure of whether he is finished sometimes just say bye and walk away, as Im so uncomfortable. I then worry the pause was because he was waiting for a response to something.

If i think my partner is annoyed it makes me intensly uncorfortable and I cant relax and will get stuck in a loop of asking whats wrong and worrying and she really struggles to convince me shes not annyed and it can escalate into an argument quite often which can then go all the way to meltdown.

If I ever drink in company the anxiety can last weeks. So i tend to not.

I'm really worried the doctors mind might have been made up from the first interview and I might not get the chance to explain better. I wish I could stop going over it in my head as my next appointment is in April.

Thanks for all your replies its good to get some perpective from others.