Who to bring to assessment

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I've posted about this on a couple of other forums, but people on here seem to be pretty knowledgeable, and I've seen a few posts contradicting what I've been told about diagnosis.

I'm seeing my GP on Tuesday to ask to be referred for an assessment. I'm taking my partner along with me, and I've got a long list (3 A4 pages!) of "symptoms" of ASD, because I struggle to put into words what I'm feeling and don't think I'll explain myself well. When it comes to the actual assessment, I've heard you need to bring along family members/parents. This is a problem for me. I'm pretty much estranged from a lot of my family. I barely see my parents, and don't have much of a relationship with them. I haven't spoken to either of my brothers in 2.5 years. I have an Aunt who I'm close to, but I don't want to get her involved in this.

A diagnosis of ASD would help me and me alone. I'd choose who I disclose it to and only tell people when I think it will benefit me or them. I don't see the point in worrying my family with it, and I don't want to ask my Aunt to keep that from my parents.

The NAS website states that partners aren't allowed to contribute, it has to be family members. Is this entirely true? Will they see not having contact with my family as a massive problem?

(This is in the UK btw)

I think it's highly unlikely that your GP will even read your list as they don't have time. I sent my GP a total of 40 pages of information on myself, which included a 26+ page report I'd written, a 10 page report by a non-clinical assessor who found I had AS, and a 5 page covering letter. He would not read it (said he was too busy), and made me make an appointment to explain it, which I was dreading for the same reasons you wrote your list.

My report was, I felt, necessarily long, because I'd had an assessment 2.5 years previously (without testing), including a 2nd opinion which failed to pick up the AS. So I felt failed by the system and needed as much information as possible. All my GP did was say "what are the issues you have" which is a hugely open question. I got referred to a psychiatrist, who to my knowledge is not an expert in ASDs, and being an expert in ASDs is exactly what you need. However, it's a way to get into the mental health system and hopefully referred on from there.

As to parental/family input: my father is passed away and my mother is estranged from me and I have similar family issues as you. I asked my brother for input but he can't even remember anything (the NT brain often doesn't remember as well as the AS one!), I have been told, informally, that many psychiatrists/psychologists won't even consider diagnosing without parental or close family input. That doesn't mean none of them will though, and the new NICE guidelines state that adults seeking diagnosis also have to have their rights to privacy considered in this respect. It is not impossible to be diagnosed without parental input, the issue is that there is currently such a wide variety of assessment and diagnosis by different health authorities as well as by different diagnosticians.

If you have any old school reports, any old staff performance appraisals, any anecdotal evidence from childhood friend(s) it can all help. There may also be evidence in your medical records, such as history of digestive issues (such as IBS), sensitivity to drugs etc. They should do testing as well, and the extra evidence is to give a more rounded picture, they do prefer to have evidence on a 'developmental trajectory to your current problems' as it was put to me,

It's not insurmountable without having your parents or family to input into the process, but you may have to try different places or check their way of doing it beforehand. You should read the NICE guidelines, as they may help you: http://publications.nice.org.uk/autism- ... trum-cg142

I didn't know the NAS says partners aren't allowed to contribute. I had been considering asking my husband of 10 years to write me a letter to bring, because he told me recently when I asked him if he felt that I monologue, that I am "the queen of monologues" and it was one of the first things he noticed about me when we met. So there is potentially valuable evidence from a partner that has known you a long time. Perhaps they mean someone you may have known for a short time who may have a biased view isn't the best person to contribute. However, why they would think any sane person would be putting themselves through the assessment process for no good reason is beyond me.

3 pages of A4 is too much for your GP appointment. A GP appointment is 10 minutes. The purpose of this appointment is to get the referral, not to convince them that you definitely have an ASD.

I lose speech when under stress so prepared one side of A4 in large print asking for a referral and the "top 3" reasons I felt this was necessary. I simply handed that to the GP (because I couldn't speak) and they referred me.

I had much more written down but used that when I got to the assessment stage - my assessors were pleased to have my input in this written format. I did not have my family involved in the diagnosis because I am not very close to them. My partner knew about it but he wasn't involved either. For the childhood history I provided a summary of a conversation I had had with my mother about my early development and also my school reports.

Both psychiatrist who initially diagnosed me (who I was referred to by the GP) and the autism specialist I later saw stated "early history may be lacking but there is substantial evidence that supports a diagosis of ASD".

I understand why parents should be involved. But it's not always practical for those of us who are adults.

Good luck.

Just to clarify, I'm not going to make the GP read the 3 pages (they're bullet points though, not continuous writing!) - that's more for the assessment. The list is to show my GP, but mainly to prompt me because I know I'll forget important things.

Does anyone actually keep their school reports into their adulthood?? I have no idea where mine would be, if they still exist..but I don't think there would be much on there. I was a pretty model student; quiet but clever and I just got on with things. I guess I'll offer them what I can; me and my partner talking. There's not much else I can do than that.

There you go, we've taken what you said literally!



Oh yes. It's a classic AS trait. Look up the Systemising Quotient test (SQ) (which I scored really highly on), by Simon Baron-Cohen. I have bank statements going back to the year dot, school reports from when I was 9 years old, all my old staff performance appraisals from 20 years ago, I keep old bills 'just in case' (another AS trait is keeping (often pointless) things just in case you need them), and all sorts of old information, all carefully filed and organised. I just thank God now that I did, you never know when you will need things.

If you haven't already, you could do the AQ, EQ & SQ tests and print them out and bring them along: http://www.autismresearchcentre.com/arc_tests

Good luck.

Oh I do that (I'll add that to the list ) - my partner's always on at me for "hoarding" things I believe will come in useful! I guess I've started fresh since leaving my parents house and everything I have is only a couple of years old as I had to leave most things behind.

Ideally they want to get an opinion from someone who knew you as a child. This is just to meet the diagnostic criteria for lifelong impairment. They often will do a written or telephone interview, so perhaps that could be done with your estranged family, you don't have to be involved.

I suspect this is one reason why PDD-NOS shows up a lot in adults, if they can't be sure of life long impairment , then you can still receive a PDD-NOS diagnosis.

Jason.

Is what I can recall from my childhood enough for a diagnosis?

I think the issue might lie in them needing (although as I said before this isn't in all cases) input from people in your family other than yourself. This might be to rule out people being delusional and inventing things, or having a skewed perception because it's about themselves. In my own report, I have a lot of information information on my developmental history and incidents from childhood that I remember well, as well as medical information that is pertinent, and that they can check up on if they need verification.

When I raised my concerns to my GP, she first listened to me and then asked me to write down a list of AS traits that I seem to have, and to then come back with this list at another pointment, in order to discuss my traits in detail. At this next appointment, my GP read through my list and asked me to talk about why I thought I had it. After all this, she told me not to stress about it and that she would make the referral to CAMHS (Child and Adolescent Mental Health Services).

When it came to the actual assessment, my mum was obviously present for the taking of my developmental history. However, when it came to my ADOS (Austic Diagnostic Observational Schedule) assessment where I was being observed by a psychiatrist and assessed by a psychologist, I went in by myself- although this was not by choice as my mum was at work.

I have yet to complete the diagnostic process, and the psychs have made it clear to me that they would like to talk to my mum alone, as well as people that know me quite well; my best friend of 7 years and my head of year at the secondary school I just graduated.

I was also thinking of bringing my older sister along to one of my appointments, as she could also give some insight into my life and personality.

...basically, with all this I'm saying that you should bring people that can attest to your childhood development and interact with you more-or-less on a daily basis; the best people for this would probably be your parent, close/long time friends and/or siblings and grandparents. In my case, these sorts of people in my life have noticed and told me about my quirks and odd mannerisms that could be attributed to Asperger's Syndrome (new insight); my mum's account of my developmental history indicated many AS traits that I never knew I had.

How long is the diagnosis process?

Unfortunately it's not possible to have anyone who's known me longer than a few years there. Because of other conditions I have, my Mum's developed a rose tinted view of my childhood and believes there's nothing wrong with me at all..a sort of denial I suppose. She's a whole bucket of crazy I don't want to unleash to be perfectly honest! There's a lot of animosity between me and my brothers and I've been on the receiving end of domestic violence from them in the past - letting one of them in particular back into my life is not something I'm willing to do for the sake of some anecdotes about my childhood. Not that they'd even show up if I did ask them to. The one friend I've had since I was 12 is out of the country at the moment and will be for some time.

This is stressing me out a bit now..

The only other person I can think of who knows me pretty well, and who has discussed my potential autism with me in the past, is a colleague. He's only known me a few years but we're pretty close. Would they accept a statement or something from him about the things he's noticed?

I really don't know; I waited about 9 months for a referral, then at the end of last month I had my first assessment. I was lucky enough to have two assessments on the same day, due to a cancellation. In September, the psychs will call up my head of year because that's when the school year will resume. After that, I think they want to see what I'm like in a school setting, what I'm like around friends and family, and then finally talk to my parents...I think this will take at least two more months or so.My mum is just 'going along with' whatever I'm doing; she, too is in denial...Parents are used to their own childrens behaviour and therefore see nothing wrong with it. Though, it's so contradictory that my mum has always said that I am quite different than my older siblings- in everything I do.[quote="mljt]The only other person I can think of who knows me pretty well, and who has discussed my potential autism with me in the past, is a colleague. He's only known me a few years but we're pretty close. Would they accept a statement or something from him about the things he's noticed?[/quote]I pressume they'll want all the information that they can get, so "Yes".

I was quiet and clever and just got on with things. Nevertheless, my school reports referenced a lot of things that could be seen as ASD related ... and it was interesting to me to see that actually how I remembered things was not as how other saw them (I thought I had no difficulties at school, perhaps because I really enjoyed school - the structure and the learning - but the reports revealed otherwise).

If you don't have them, you don't have them. It's a shame. They really want to see some kind of view of how you were as a child that isn't tinted from your perspective, which is why they ask for parental involvement or similar (they don't even want reports from peers ... I have a friend who I have known since I was 3 but they did not want her input because she was the same age as me so could not see my behaviour "objectively".

But if you have no way to offer such a perspective then they'll just talk to you.



Likewise with my mum. The hilarious thing is when I had an out of context "chat" with her about my early development she brought up loads of things that could be indicators of autism. But I know if I pointed that out to her she would decline to see it... for this reason I did not have her included in the assessment.


The diagnosis process really depends on where you live ... it seems to vary depending on the availability of various services in your local area. I was referred by my GP to a general psychiatrist who had an interest in ASDs in adults. The referral took 3 months come through, and I saw the psychiatrist 3 times over 3 months for a total of 4.5 hours. We basically just talked about my experience of life so far and I guess he observed my behaviour etc. I also had to fill in pages and pages of questionnaires in between sessions. At the end of our last session (6 months after I went to the GP for referral) he diagnoised me with an ASD and stated it was obvious from the moment he met me. He referred me to an autism specialist at the local autistic society for further assessment of my ASD and support needs. That referral took a year to come through. My diagnosis was confirmed (and refined to Asperger Syndrome, although both the psychiatrist and specialist prefer the term ASD). So from referral to confirmation of diagnosis was 18 months, but I had a diagnosis after 6 months.


No one else has been involved in my diagnostic assessment - just me. So don't stress unnecessarily. I think that assessors do understand that family circumstances don't always allow the input of an adult who knew you as a child and while they may be cautious to diagnosis with a "lifelong" condition without any objective evidence to support this they can diagnose you with a note of the lack of this evidence if they feel there is sufficient current evidence. Apparently my speech, facial expression (or lack of) and general mannerisms provided sufficient "substantial evidence" in addition to my reports about life etc.

Hi YellowBanana,

just out of interest, what exactly are the clues that show up in school reports. Mine are quite sparse on the comments, but there is a comment that my head was always in a book - though that isn't necessarily much of a clue. I was interpreting the fact that my grades fluctuated and that subjects which I have since found out I am actually good at and very interested in, I got low scores at school for. My take on this is that I have always had trouble understanding how other people explain things (which happened when I took driving lessons as well), I am much better at explaining and understanding written stuff, which as I understand it is a trait. I also often need graphics to get even written instructions, otherwise they can scramble my mind, as I think very pictorially. Your input would be helpful to me.