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About ASD_Diagnosis_Project

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    Norfolk Broads
  1. Thanks for your input Sa Skimrande. Sorry to hear about your bad experiences with your GP. Part of the project is looking at whether there is a need to develop specialist mental health services that are specifically designed to help people with ASDs. I wondered if you (or anyone else) had any thoughts on this?
  2. Thanks Lyndalou and Lancslad for all your insightful comments, the process of obtaining an ASD diagnosis as an adult is an area in which there is virtually no research so hearing your first hand experiences is very informative. Lyndalou - even though you could not complete the survey I would like to include some of your comments in the project if possible? There has been quite a lot of work done with parents of children with ASD, which tends to show the situation regarding diagnosis and support is improving, in part due to a large increase in awareness of the condition. Unfortunately I am not sure the same can be said for adults. Robert - this research is intended as a follow up to paper written in 1997 by Howlin and Moore called "Diagnosis in Autism: A Survey of Over 1200 Patients in the UK," which found that half of parents were dissatisfied with the process. They also wrote a paper in 1999 called "The diagnosis of Autism and Asperger Syndrome: findings from a survey of 770 families" which found that parents of children diagnosed with AS experienced longer delays in getting a diagnosis and were less satisfied with the process than parents of children who received an autism diagnosis. We will be comparing our results with the findings from these surveys to see if things have improved in the last 15 years. As it is an exploratory study of people's experiences we have not got a control group, but you do raise a valid point that this could be an interesting avenue for future research. Ideally we would compare it to another diagnosis that is quite subjective in which the outcome depends a lot on the particular views of the professional you see, alongside a condition which has much more clear-cut, biological diagnostic features that would be apparent on tests. Our project has just begun but we would like to keep it running until we have similar large numbers of responses gained in the studies mentioned above. I realise the future of the term 'AS' is uncertain but this is part of the reason why I think research in this area is important. We hope to be be able to contribute to the debate concerning the diagnostic labels used in ASDs and also to the NICE guidelines that are currently being written concerning diagnosing ASDs in adults. The plan is indeed to publish it in a peer-reviewed journal in the future! jlogan1 - if you have been through the diagnostic process three times for three different children then filling in your experiences for each one would be very helpful.
  3. Hi trekster, Thanks for filling in the survey. I know the AQ gets mixed reviews from people, and there was a bit of debate around including it. In the end it was decided to keep it in as with an online survey where we never meet partcipants or get to know their background it is a quick and standardised way to get an idea of how many traits associated with the autistic spectrum a person has. Despite it's flaws (and confusing double negatives!) it may help us see if there is any pattern between extent/type of autistic traits a person has and the ease with which they can get diagnosed. For example past work has found that in young children those who present with delayed communication tend to get diagnosed faster than those presenting with behavioural problems. Thanks again for your comments, especially those about mental health services. Whether there is a need to develop mental health services that are specialised towards supporting people with ASDs is an area we hope to learn more about via the survey.
  4. Cmuir and Sally44 - thanks a lot for your responses and comments. I'm the editor for the survey for adults with ASDs and have gone through and added free text boxes for additional comments at each stage of the diagnostic process, along with questions on good/bad aspects of diagnosis. My colleague who is administering the parents survey is away today but will do the same on Monday. I agree some sort of clarifying point should be made regarding whether certain symptoms are related to an existing medical condition. Sally, it is an interesting point you raise about depression/anxiety in relation to stage in diagnostic process and is something I think we should investigate to see if there is any correlation between the two. Your story highlights many of the flaws in the current system and the uphill struggle getting a diagnosis and support can be, I can only commend you for your perseverance and dedication. I know that, even with changes, our survey will not be able to capture fully people's experiences. We intend to use it collect a broad overview of experiences and opinions nation-wide and then undertake more in-depth interviews with people to investigate more fully issues raised in the questionnaire.
  5. Chris and Sally many thanks to you both for giving such detailed and insightful accounts of your experiences. I appreciate your comments about not being able to fully explain the process you went through and will incorporate some free text boxes into the survey to allow people to expand on the basic details of their experiences. I can assure this research will make no such claims. It is centred on finding out what people think about the services currently available for diagnosing ASD and the subsequent support offered. Questions on depression and anxiety are included in the survey for both individuals with ASDs and their parents to see if this is an area in which people would like more support/services. I agree that limiting asking about such symptoms to a two-week period means we will probably not get a full and accurate picture of an individual's mood but at present these are the most validated and widely used scales to investigate symptoms of depression and anxiety, even if it just means we get a snapshot of how someone is feeling at that moment in time. Thanks again for taking the time to share your experiences, I'm beginning to realise what varied and often incredibly complex paths people have to take to get a diagnosis. I will be happy to send you a copy of the results if you would like.
  6. Glad I passed the spam inspection! We have support from the NAS and you can see our project listed in their research section in case you had any doubts left! http://www.autism.org.uk/get-involved/volunteer/take-part-in-surveys-and-research/research-recruit-people-or-participate/research-projects-living-with-autism/experiences-of-receiving-an-autism-diagnosis.aspx Many thanks to those of you that have completed the survey, and for your comments above. Scafell Pike - I know there is quite a lot of research being done into ASD in general at the moment, I think in part this is because awareness of the condition has increased greatly in recent years and as such so has the number of people being diagnosed. Kilimanjaro - I don't know Lauren but I'll keep an eye out for her! Hope the research went well.
  7. Hello! My name's Lydia and I'm part of a group of researchers at the University of London who are interested in hearing about people's experiences of receiving a diagnosis of autism spectrum disorder in the UK, either your own or as a parent of a child with ASD. We are trying to collect the opinions of as many people as possible so if you fall into either of these groups we would love to hear from you. We are carrying out a large study that hopes to discover what makes a good experience and what areas could be improved. The findings, alongside data collected from healthcare professionals working in this area, could help inform the way ASD diagnosis is done in the future. Information is collected anonymously via an online survey which takes around 20 minutes. It’s easy to get involved or find out more information about the Autism Diagnosis Project at our website; www.gold.ac.uk/psychology/research/asd-diagnosis Many thanks, Lydia
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