nippy sweetie

Get your GP to check the NICE guidelines re diagnostic assessment for autism in adults.They were published last year and they have already produced guidelines for commissioners based on these. Its outrageous that you should have to pay privately for an assessment. Good luck

By the other person do you mean the person on the spectrum or who they are talking to? If the person on the spectrum, I find that writing/drawing out a diagramme of who says what and why can help showing what both sides are thinking at the time. Clearly seeing the disparity can be illustrative. Doesnt always work of course though. Of course it also depends on how people are feeling. A person on the specrum may be so "overloaded" both sensorily and with the underlying emotions of the moment that they may just not be available for a logical discussion. Timing can be key and there`s something about chosing your battles here. As I said we keep trying! Sorry no easy answers.

Sorry didnt mean to be nippy re the ADOS. I hope he will be given a full report with recommendations/ discussion re implications of diagnosis for future planning/ potential specific support needs etc. Good luck. Diagnosis should be a start rather than a final outcome but it must seem so for parents who have struggled to have their chlld`s needs assessed. I should say that I wouldnt call diagnosis at 16 a "late" assessment! Working in an adult diagnostic service its amazing the numbers of people not diagnosed in childhood.

ADOS is a structured onservation and should only form part of an assessment. A full developmental history is also required as well as potentially some more "adult" assessments

I agree with many of the previous suggestions: different perceptions of what had actually happened, language comprehension problems etc. I`ve also met people on the spectrum who have told me apparent "whoppers". They have later turned out to be either wishful thinking -what they think should have happened or want to happen, TV storylines ( that gave me many frights until I recognised one of the stories as an episode of casualty!!) or what they think I want to hear. These confabulations have never been of ill intent but demonstrated a difference in thinking style. Its always interesting trying to work out whats underneath it all and sometimes, frustratingly, we just cant. But we keep trying...................

Check out the Iwork4me website. Its been set up in Scotland to support self employment for people with ASD .

For an adult assesment its important to have information about how someone has been across their whole lifespan. Often thats a person`s Mum but siblings, too, are ones who have known a person since their earliest years. Of course, sometimes people dont want to involve their families and this can be OK if there is other information available (eg from child health records, if any, or even GP records). This is to be sure that the "autistic type" behaviours and reported experiences are lifelong and havent come on after eg a head injury or an acute illness or some other trauma. Diagnosis in adulthood can be a lot of detective work collecting the relevant infomation and applying it to diagnostic criteria (in itself not straightforward!!). I prefer to have several appointments with people re potential diagnosis. Its worth taking time and getting things right. Also, of course ,people may be extremely anxious at a first appointment and its well worth really trying to see people when they are feeling comfortable with you. Thats just one diagnostician`s opinion but its after many years exerience.

Probably best if I dont say. However I wanted to give some ideas to people who maybe need to be more specific about saying why they "just want to know" ie making sense of past experiences and helping in considering future life planning. For some, there may be benefits, employment or housing implications. People should ask for a letter stating their diagnosis in case they need "proof" (not necessarily a copy of their report which may contain confidential info). They should also have access to someone to discuss this diagnosis with to think about who to tell/ whether its in their interest to tell etc. The implications of a late diagnosis are important to discuss and reflect on.

As an adult diagnostician, we frequently get referrals for people who "just want to know". Thats always seemed a perfectly reasonable expectation to me. People need to know as, having a diagnosis, can make sense of much of their life experience and also has important implications for future life planning. Its important to say, however, that its not always ASD. There are other explanations for the presenting features so, in adults, it can be more a matter of differential diagnosis than, necessarily, just someone ticking off from a list. The bottom line is that you really have to have information from the individual themselves as well as information from across the lifespan and the views of someone who knows the person well enough to give as impartial a view as possible from their own viewpoint. Its not easy but neither should it be. Its worth getting right. Adults may have waited and wondered for years.

I work with adults with AS. I`ve found that "perfectionism" is a really common issue for people- mostly females in my experience. I`ve met really effective hard working individuals whose contributions are highly valued at work yet whose need to get things absolutely right is torturing them and can lead to illness and breakdown. A loss to their workplaces but mostly to their own feelings of self worth. What helps? or might help? Hard to say other than maybe a person to go over with them and clarify what the problems are and whose problems they actually are. Very often its due to circumstances/situations outwith the control of the individuals concerned eg staff shortages or sudden changes at work. Sadly workplace bullying or perceived bullying can play a significant part. I wish smileyK all the best and hope that things improve

My Dad always told me never to believe anything you read and only half of what you see! He was very sceptical about research and about human nature in general! I`m not worried about the survey only about the ultimate usefulness of the findings. I`ve read such useless stuff over the years that is peddled as gospel truth! I wanted to highlight the possibilities of people completing the surveys not having the best of intentions. While I`m sure most Aspies are absolutely truthful I`ve met a fair few mischiefous ones too who would love to play around with surveys with obvious effects on the results.

Is it not a bit risky using a publicly available online survey? You could have the same people completing several times or giving contradictory info or even parents completing using what they think their family member might say. Is the researcher actually going to see and interview actual people with ASD too?

Why is all apparent development of services down to the NAS in England? There are lots of other ASD organisations great and small. The Autism in Maturity project seems far too little far too late. I know things here in the frozen North are not perfect but with the ASD strategy came funding- not a fortune compared to NAS yearly budget but £13.4 over 4 years has seeded lots of local projects as local people know what they need locally. All the proposed stuff re adults in the ASD in maturity project is already well under way here and in some cases has been for years. Have the NAS suddenly invented adults with ASD? A key statistic for us here is that using the prevalence figure of 1:100 there are fewer than 9,300 under 16s with ASD and 42,500 adults potentially with an ASD. Where are they though? Are some managing well? (I suspect so) are others languishing unrecognised in other services? (likely) are some just sitting miserably at home? (I`d like to hope not but have a sneaking suspicion they are) There`s a lot to do here and we have to make the most of it while the funding lasts. Its important that sustainable supports of all kinds are set up I feel.

Are you also looking at the individual`s self esteem? Why just the parent`s perspective?

oops sorry for double post!

Here in Scotland our Scottish Autism Strategy is focused fairly squarely on adults. They went for an Autism Strategy rather than a Bill as it was felt more likely to produce more practical outcomes. It seems to have helped or at least set the ball rolling.Adults with AS have been taken very seriously The extremely successful "one stop shop" for adults with Aspergers in Edinburgh has been really excellent for many people (800+) and 6 more such projects are now being funded throughout Scotland. I suppose a key thing is that the NAS is only one of many ASD organisations up here and is not accorded the status it seems to have taken for itself down South. Loads of ASD projects both large and small have also been funded with an adult focus (as well as some for kids too). Of course there is much to do. The mentorship idea is great. Just need to somehow get it organised!!