Bard Report post Posted January 4, 2008 - it had honestly never occurred to me until reading your post that someone might find a self-dx objectionable, so was good to read your views on it. That's what I mean about this forum being important because it has so many contributions from such a wide range of people. My eyes have been opened to many things that I was not previously aware of. Quote Share this post Link to post Share on other sites
Mumble Report post Posted January 4, 2008 I hope I've not upset you Mumble - it had honestly never occurred to me until reading your post that someone might find a self-dx objectionable, so was good to read your views on it. It's OK, you haven't <'> I wasn't quite so clear. It's more a self-dx (or even a clinical dx for that matter, but I've seen/heard it more with self-dx) used as an excuse rather than as understanding that I object to. With self-dx, we just have to be careful it dosn't become "fasionable" as I tink it has been to a certain extent with dyslexia and ADHD. This means that 'real' cases can be overlooked and not as supported as they may be if people's perceptions weren't tinged by others who aren't but say they are for whatever personal reason. Does that make sense? Quote Share this post Link to post Share on other sites
Bard Report post Posted January 4, 2008 (edited) Edited January 4, 2008 by Bard Quote Share this post Link to post Share on other sites
pearl Report post Posted January 4, 2008 It's OK, you haven't <'> I wasn't quite so clear. It's more a self-dx (or even a clinical dx for that matter, but I've seen/heard it more with self-dx) used as an excuse rather than as understanding that I object to. With self-dx, we just have to be careful it dosn't become "fasionable" as I tink it has been to a certain extent with dyslexia and ADHD. This means that 'real' cases can be overlooked and not as supported as they may be if people's perceptions weren't tinged by others who aren't but say they are for whatever personal reason. Does that make sense? Yes it does, and on that I am absolutely in agreement with you. I posted a while back that in 10 years AS has gone from something no one had heard of to something everyone thinks they understand, and because of that there are bound to be mis dx's etc & people using it for their own ends. I've not come across anyone using it as an excuse myself, but I'm sure it happens, & in the studenty circles you move in I can see that might be a problem, when there is you with genuine needs & others who are just playing the system. Quote Share this post Link to post Share on other sites
cmuir Report post Posted January 4, 2008 (edited) One final point - I'm sorry, but i do not agree that parents or patients automatically 'know best'. (that's a general observation, BTW, so please don't misinterpret it as specific to yourself or to Matt's situation). Certainly the observations, experiences and knowledge that parents have of their children can be hugely valuable to the diagnostic process and should be part of any holistic assessment, but if we reach a point where 'because my mum says so' replaces thorough medical investigation I think we'll be taking a big step in the wrong direction. Hope that clarifies things a bit L&P BD I too share the belief that parents/patients do not know best, nor would I infer that parents are qualified to tell specialists 'X has an ASD'. However, I do for example think that if a parent has a strong suspicion to believe that their child hast an ASD and can support that belief, then they're certainly qualified to convey that to a specialist for further investigation. In my case (I know I'm not alone on this), I was passed from pillar to post and saw numerous specialists before finally seeing one who was very experienced before my son was finally diagnosed with an ASD. Basically, specialists are only human like us and they're don't always get it right (some appointments are short so a diagnosis cannot be given in the space of 15 minutes) which is why a diagnosis needs to be a collaborative investigation. Some people are very knowledgeable about ASDs whilst others know very little, hence the reason there's such a wide 'membership' on this forum. Therefore we cannot make general observations. Anyhow, let's get back to supporting Matt. Caroline. Edited January 4, 2008 by cmuir Quote Share this post Link to post Share on other sites
Karen A Report post Posted January 4, 2008 (edited) Hi Mumble and Bard. I think it very important to remember that many parents use the Forum in the process of attempting to obtain understanding and support for their children in very stressful circumstances.Parents represented on the Forum include parents of children with various difficulties including ADHD and Dyslexia either alongside ASD or as a single condition.Generalisations that suggest that some categories of SEN are more worthy than others are not helpful. In my experience the biggest problem parents face is in obtaining any support at all...many resort to guess work with regard to a Diagnosis because they cannot obtain an official Diagnosis.I will be ever thankful that an individual was brave enough to suggest that my son might have ASD because she knew about ASD because awareness has increased.Before that point plenty of people had suggested he was badly behaved with an attitude problem. I say thank goodness things have changed....even if people understand a bit surely that is better than ignorance and stigma. I am in full agreement with Baddad that a full holistic assesment should not be replaced by parent's ad lib diagnosis.However it is important that parents who arein the process of seeking to obtain an assessment are not put off accessing support on the Forum because of negative generalisations.Karen Edited January 4, 2008 by Karen A Quote Share this post Link to post Share on other sites
Bard Report post Posted January 4, 2008 Sorry if I have caused offence to anyone here, or anyone who may be looking for information. ADHD and dyslexia do exist and are in no way less worthy than other specific learning needs. However, I also believe that it is necessary to look at external factors as well, when deciding what are the issues affecting a child's learning in school and their behaviour in general. And some parents are less willing than others to be clear-sighted, or to attempt to change their own responses or practices to see whether that might help a situation. Quote Share this post Link to post Share on other sites
Mumble Report post Posted January 4, 2008 Generalisations that suggest that some categories of SEN are more worthy than others are not helpful. Oh no, I wasn't saying that at all. I never have, and never would. I think ADHA/dyslexia are good examples of SEN used as excuses (I'm not talking about children properly dx-ed with these, or parents who suspect on good grounds their children may have them and are beginning the dx process, I'm talking again about the use of such terms as nothing more than ill applied terms to excuse poor behaviour/lack of manners/not having to try etc.). My concern is that ASDs seem to be going the same way in that, as others have said, more and more people seem to think that they 'know' what ASDs are all about with actually very little understanding. I want to make it very very clear - I am not, have not meant to, and never would want to, degrade the experiences of anyone on this forum. I can only truely know what AS is like from my perspective, and my perspective will be, as for everyone, tinged by my own life experiences and many non-ASD things. I really value the support I've had here - all I ever wanted to do was state my opinion. I'm sorry if I did that in a way that wasn't acceptable/useful/helpful. Quote Share this post Link to post Share on other sites
Karen A Report post Posted January 4, 2008 Thanks. <'> <'> I greatly value the support I have had here as a parent over the last couple of years and am keen not to put off newer Forum members that might be looking for support at a confusing time.Karen. Quote Share this post Link to post Share on other sites
Matt J Report post Posted January 4, 2008 So getting back on topic, theres not really a lot I can do? Having requested someone with AS experience from my GP to br refered to, just have to wait for the call I guess... Quote Share this post Link to post Share on other sites
Tally Report post Posted January 4, 2008 Matt, the NAS have a database of professionals qualified to diagnose Asperger's in adults. You can contact them by email and they can tell you where your nearest one is who works for the NHS, and you can pass this information on to your GP. The NAS can also tell you about private diagosticians, and you can consider paying for private assessment. However, your current problems with depression, to the point where you are unable to leave the house, are very severe. I do think you need to access help for these problems, regardless of whether or not you have AS. If you go to an appointment and say, "the problem is that I think I have Asperger's," you are not going to get the help you need. What you need to say is, "the problem is that I am very depressed and feel extremely anxious when I leave the house, etc." Further down the line you can mention that you feel you have a lot of traits of AS and wish to seek assessment. At this point though, a diagnosis is not going to help you feel less depressed or anxious. I feel that, right now, you need to focus on the most severe problem. Once you are over this crisis, you can afford to focus on the other issues. Quote Share this post Link to post Share on other sites
annie Report post Posted January 5, 2008 Matt, the NAS have a database of professionals qualified to diagnose Asperger's in adults. You can contact them by email and they can tell you where your nearest one is who works for the NHS, and you can pass this information on to your GP. The NAS can also tell you about private diagosticians, and you can consider paying for private assessment. However, your current problems with depression, to the point where you are unable to leave the house, are very severe. I do think you need to access help for these problems, regardless of whether or not you have AS. If you go to an appointment and say, "the problem is that I think I have Asperger's," you are not going to get the help you need. What you need to say is, "the problem is that I am very depressed and feel extremely anxious when I leave the house, etc." Further down the line you can mention that you feel you have a lot of traits of AS and wish to seek assessment. At this point though, a diagnosis is not going to help you feel less depressed or anxious. I feel that, right now, you need to focus on the most severe problem. Once you are over this crisis, you can afford to focus on the other issues. Hi Matt, Tally has given some great advice. First and foremost, take one step at a time. It is more important to deal with your current difficulties. It is very hard to get 'in the system' to start with, but once you are in it you can hopefully begin to get some answers and support. Annie xx Quote Share this post Link to post Share on other sites
Mumble Report post Posted January 5, 2008 Matt, Tally is absolutley right and has written that very, very clearly. Please follow her advice. So getting back on topic, theres not really a lot I can do? Not exactly. If/when, having worked on other issues, you do see an AS specialist, you will need (as it is important they see that these problems have been persistent throughout your lifespan, especially in your formative years): Someone who can talk about you as a child (usually a parent) Any supporting evidence from school (reports, etc.) Someone who can go with you who knows you well now and can give an opinion on how they see your difficulties from their point of view If you haven't talked to parents etc. about your concerns then it would be worth doing so. I do think it's important that you sort the 'foreground' before the 'background'. An AS dx is very much about things that have been continuous - at the moment I think that your current state of mind would cloud any judgement made. Quote Share this post Link to post Share on other sites
Matt J Report post Posted January 5, 2008 I have already done what Tally has suggesed, as I already said, it fell on my GP's deaf ears. Quote Share this post Link to post Share on other sites
Karen A Report post Posted January 5, 2008 Hi Matt.If you have seen one GP and are not happy then another option would be to ask for a second opinion with a different GP in the practice.If there are no other GPs in the practice then you could change GP practice.If you are considering either option it would be worth talking to PALS [Patient Advocacy Liason Service] for your local PCT.Karen. Quote Share this post Link to post Share on other sites
Tally Report post Posted January 5, 2008 You sometimes really have to push for treatment, which is completely unfair, but unfortunately true. You are suffering from crippling depression and anxiety to the point where you can barely leave the house. If your GP does not recognise how seriously ill you are right now, you must see another GP. You are entitled to treatment. ReThink may be able to advocate for you to help you get the treatment you need. Quote Share this post Link to post Share on other sites
Matt J Report post Posted January 7, 2008 (edited) I called up to today to see what I have to do to be diagnosed.. I called The Autism Research Centre and they were helpful. They told me there are no consultants in my area...I could go to the ARC as they have one there that is free but they are only taking people from Gloucestershire at the moment.... and...I have to get to either an NHS person, in another area / county but my GP would have to pay from his fund... Or I can go to a private one for �2,000 ahead... Obviously I would like to go for the NHS one.... It?s all so much to take in Edited January 7, 2008 by Matt J Quote Share this post Link to post Share on other sites
pearl Report post Posted January 7, 2008 Well done you for taking a big step forward. Take some time to mull it over, call them again if you need to to get it clear in your head. <'> Quote Share this post Link to post Share on other sites
Tally Report post Posted January 7, 2008 Matt, it does not cost �2000 to go private. The person who assessed me is considered one of the "top" autism experts in the country, and I paid �600. You may as well push for NHS assessment, but it may simply be impossible. In the meantime, you also need to be seeking help for your acute depression and anxiety. Quote Share this post Link to post Share on other sites
Matt J Report post Posted January 7, 2008 Well the ARC said it would be 2k upwards... I dont see myself as having depression.. I keep getting told this when I go and see my GP, and he dishes out the pills and they dont do anything... because I dont think I need to be treated for depression Quote Share this post Link to post Share on other sites
Clare63 Report post Posted January 7, 2008 I called up to today to see what I have to do to be diagnosed.. I called The Autism Research Centre and they were helpful. They told me there are no consultants in my area...I could go to the ARC as they have one there that is free but they are only taking people from Gloucestershire at the moment.... and...I have to get to either an NHS person, in another area / county but my GP would have to pay from his fund... Or I can go to a private one for �2,000 ahead... Obviously I would like to go for the NHS one.... It?s all so much to take in Matt, Pleased to hear you made that call, that 's a good start and a step forward. Clare x x x Quote Share this post Link to post Share on other sites
Matt J Report post Posted January 7, 2008 (edited) When I called the ARC they said "It's the bottom thing with GP's they don?t know much about it and it gets over looked. You can tell them time and time again and it wont register" Well they got it spot on there!!! Edited January 7, 2008 by Matt J Quote Share this post Link to post Share on other sites
tsmom Report post Posted January 8, 2008 Matt,The first GP i saw with regard to my daughter was useless he made me feel like i was wanting her to have asd.Yet the school were saying try once more if he wont help we will seek help from the school dr.I went back and insisted he refere her(i had already rang the hospital to ask who would be best person to refere her to)He did refere her but as i walked out he said Mrs ** i hope you will be happy with the outcome,its a slippery slope and once you start down it you can only go lower with no point of return.I was so upset i cried for days.Then as school got outside people in to assess i realised i had to fight for her so i rang the hospital and talked to the secretary who said up to 2 years wait.i then ran twice a week asking if there had been any canceled appointments.After 3 months the secratary rang she said i know how desperate you are someone has cancelled but you need to be here in an hour.I got T out of school and went.Two hour appointment and i left with a SALT appointment for the following week to return to the Pead a month latter .She then got all the info from school and SALT and gave us a DX. I no longer have that GP Getting the Dx was far worse than i thought it would be,i thought help would follow it didnt we have fought every step of the way. Mumble i totally agree with you on self dx and i didnt think you were being unfair with regard to dyslexia/adhd.I have a son who has dyspraxia. i also run a local supprt group for kids with sen/disabilites,a few people have come through the group who say my child has XYZ then after spending time with them its very clear parenting is a huge problem(thats not to say they dont have ADHD ect i would never dx or say someong doesnt have a need).We get a lot of funding and i think word gets round that we take the kids out of day trips ect and some people want to be part of it.We now only take kids with an offical dx,people are welcome to attend supprt group meeting whilst obtaining a Dx but not access funding. Quote Share this post Link to post Share on other sites
Matt J Report post Posted January 13, 2008 (edited) Well, the GP is still being stubborn, he still thinks I am depressed, they only reason I could be depressed and I mean could be (I know my body better then anyone and know I am not) he is making me by not listening to what I am saying!! I have told him time and time again. And yes.. I have asked about seeing other GP's, the practice I go to has 6 GP's (Its split into two) I am allowed to see two, the one I am registed with and the other one in the half of the practice I am in, I have seen them both and they are hopeless. Wherever I need to go to get diagnosed i need a referal letter, and as they are not willing to accept that I myself know I have this, then they will not refer me anywhere. As there are no people who can diagnose me in my area I have to go out of the county and my GP would have to pay for this out of his 'fund'. So i'll just carry on banging my head against this wall... Edited January 13, 2008 by Matt J Quote Share this post Link to post Share on other sites
llisa32 Report post Posted January 13, 2008 Hi Matt, Having read through your thread again I have to say that you do sound depressed....you may well have AS, but at present your 'symptoms' appear to be depression. You have mentioned yourself 'a lack of motivation', 'no sense of purpose' 'going to bed feeling depressed' etc. I know this may be hard for you to accept, but really....in order to help yourself you really need to take onboard the help the GP is offering you. Anti D's are not a 'quick' fix...they don't help you feel bouncingly happy within a few days, but they would over the course of a few weeks help you to feel more 'balanced' and perhaps feel more inclined to research other avenues re an AS diagnosis. If the pills don't work, go back and get different ones, request some counsiling. Being AS does not automatically 'result' in poor motivation, lack of purpose etc....but depression does and can co-exist with AS so you do really need to explore this avenue. I suspect your GP is unwilling to progress anything about seeking a diagnosis for AS because the depression may well cause false positives or false negatives in any assessments for AS. Take a read back through this thread, you do 'sound' depressed..and I know you blame this on doctors not listening to you, but whatever the cause I think you really do need to get some help with it. You've been given lots of really good advice from others on here - many of them with much more experience than me. I think it would make a great start to your week if you go back to the docs and say 'okay, I accept I may be depressed - what help can you give me for that? - and start there. I realise you might not be happy with what I've written, but it is said with the best possible intentions and with your welfare at heart <'> Quote Share this post Link to post Share on other sites
Matt J Report post Posted January 13, 2008 I not happy with what you have written, and Im loosing paitence with this forum. I will say it once more and once more only, I am not not depressed, my GP atempted to treat me for depression, with anti-depressants, and guess what they had no effect at all, and why, hmm lets see, because I am not depressed. Quote Share this post Link to post Share on other sites
Clare63 Report post Posted January 13, 2008 Well, the GP is still being stubborn, he still thinks I am depressed, they only reason I could be depressed and I mean could be (I know my body better then anyone and know I am not) he is making me by not listening to what I am saying!! I have told him time and time again. And yes.. I have asked about seeing other GP's, the practice I go to has 6 GP's (Its split into two) I am allowed to see two, the one I am registed with and the other one in the half of the practice I am in, I have seen them both and they are hopeless. Wherever I need to go to get diagnosed i need a referal letter, and as they are not willing to accept that I myself know I have this, then they will not refer me anywhere. As there are no people who can diagnose me in my area I have to go out of the county and my GP would have to pay for this out of his 'fund'. So i'll just carry on banging my head against this wall... How about changing surgeries all together and start afresh ???? Clare x x x Quote Share this post Link to post Share on other sites
baddad Report post Posted January 13, 2008 I not happy with what you have written, and Im loosing paitence with this forum. I will say it once more and once more only, I am not not depressed, my GP atempted to treat me for depression, with anti-depressants, and guess what they had no effect at all, and why, hmm lets see, because I am not depressed. I'm really sorry Matt that the entire forum has managed to test your patince by not agreeing with your self diagnosis 100%. Feel free to PM myself or any other mod if you wish to make a complaint L&P BD Quote Share this post Link to post Share on other sites
mossgrove Report post Posted January 14, 2008 I not happy with what you have written, and Im loosing paitence with this forum. I will say it once more and once more only, I am not not depressed, my GP atempted to treat me for depression, with anti-depressants, and guess what they had no effect at all, and why, hmm lets see, because I am not depressed. Matt I understand your frustrations but you also have to accept that many of the people here have a valid point of view. I have suffered from depression myself, I have children who are on the Autistic Spectrum, and I know people who are Autistic, people who have, or have suuffered from depression, and I know Autistic people who have suffered from depression. This also applies to many of the people who have commented on this thread. I am sorry if this is unpalatable to you but the acute symptoms you are describing are those of depression, not aspergers or Autism. Based on the information we have about how you are feeling both the GP's you have seen and many people here are saying that they think you are depressed. Ultimately we would be doing you a disservice if we said to you "I don't think it's depression at all" and I don't think it is the duty of any forum to unconditionally agree with what any poster says. Remember that depression takes many forms (It's not nearly as simple as feeling a bit down) and the ineffectiveness of a particular anti-depressant in treating it does not prove that it is not depression. Equally a determination that and anti-depressant is not going to help on the part of the patient will make recovery that much harder, or even impossible. Have you looked at any of the on-line diagnostic questionnaires for depression? Remember there is no conspiracy here to stop you getting an ASD diagnosis. Everyone has contributed to this forum in good faith. Depression and ASD are not mutually exclusive, just because someone says you may have depression does not mean thay are telling you you cannot have an ASD. Simon Quote Share this post Link to post Share on other sites
loobylou2 Report post Posted January 14, 2008 Hi Matt, sorry to hear that things aren't so good right now. I think that you really need to get some help with the way that you are feeling right now before you try and seek a diagnosis for AS. Its very easy if you're feeling down to focus on one area of your life and blame it for everything that is wrong. Get some help to make you feel better in yourself first, otherwise you will not be able to view any advice objectively and therefore end up in a vicious circle of negativity. Everybody on here is trying to help you, but in the end only you are responsible for how you act on the advice given. Take care Matt, its a horrible place you're in right now and I hope you can find your way out. Remember to come back here when you need some help. <'> <'> <'> Quote Share this post Link to post Share on other sites
Flora Report post Posted January 14, 2008 (edited) Matt, first of all I hope you are ok, and even though you may have felt frustrated by some of the replies there have been hopefully it won't stop you from seeking the help you so obviously need. Also, if you stick around you will find this forum is very good on the whole. I have no idea whether you are on the spectrum or not and so will not give an opinion on what may be at the root of your difficulties. I will tell you though, that for all of my life I suffered from depression and went through periods of being relatively dysfunctional (and still do). I'm not going to go into my life story so don't worry but early last year I was fortunate enough to be assessed (privately) and it was confirmed that I do have AS. I say confirmed, becaue I had suspected, in fact I'd go as far to say KNEW that I had AS, for quite some time. What this should tell you is two things; 1. Being depressed does not rule out, or confirm, any other cause of your difficulties, and 2. Just because someone suspects they have a condition (ie self dx), it does not necessarily mean they haven't!!! I think you should take your GP's advice and try some sort of anti-depressant, preferably a different one from the one that didn't work. Then when you have taken those for a while and if you still feel the same then the GP will possibly be more behind your referral elsewhere. You never know, it just may come through sooner than you think. If, as even you have said in some of your posts, you are depressed then whatever happens you will be much more able to deal with it if you accept some treatement. Sometimes as 'lay people', we suspect all sorts of things. We then seek a professional opinion and it is either confirmed or not. However, suspecting you have a diagnosis of one thing or another, does not and should not diminish it's importance until proven otherwise. Flora Hi flora - I've deleted the opening and final paragraphs of your post as they seemed a little inflamatory, as well as moving the topic back into difficult territories that have already been covered. L&P BD Edited January 14, 2008 by baddad Quote Share this post Link to post Share on other sites
Flora Report post Posted January 14, 2008 Okey dokey. Quote Share this post Link to post Share on other sites
Matt J Report post Posted January 15, 2008 I am not not depressed, I got talking to another GP with the ins and outs and he told me im not depressed and was quite peed of that my GP was pushing pills at me, he suggests I complain so I will be writing making them aware of the lack of duty of care, he also suggested that my gp seems incompitant. So there we have it from the words of a another GP So back to banging my head against the wall with the referal Quote Share this post Link to post Share on other sites
tsmom Report post Posted January 15, 2008 Well, the GP is still being stubborn, he still thinks I am depressed, they only reason I could be depressed and I mean could be (I know my body better then anyone and know I am not) he is making me by not listening to what I am saying!! I have told him time and time again. And yes.. I have asked about seeing other GP's, the practice I go to has 6 GP's (Its split into two) I am allowed to see two, the one I am registed with and the other one in the half of the practice I am in, I have seen them both and they are hopeless. Wherever I need to go to get diagnosed i need a referal letter, and as they are not willing to accept that I myself know I have this, then they will not refer me anywhere. As there are no people who can diagnose me in my area I have to go out of the county and my GP would have to pay for this out of his 'fund'. So i'll just carry on banging my head against this wall... Is the new GP at your practice?Is he/she going to refere you to someone that can help you now? Quote Share this post Link to post Share on other sites
mossgrove Report post Posted January 15, 2008 Matt I have never heard of a GP describing one of his colleagues as incompetent before, in my experience they tend to stick together. Is this other GP part of the same practice? I would proceed with caution if you are going to write to your GP Practice accusing them of a lack of care based on your converation with the other GP. It is highly unlikely another GP would be be willing to publically criticise a fellow GP so if you quote his opinion he is almost certain to deny he said anything of the sort, and you could cause yourself problems. Simon Quote Share this post Link to post Share on other sites
