Morgado

Sorry if this has already been mentioned... Is anyone else slightly offended that Autism has been lumped under the "Mental Health" category by NICE in their proposals for new standards of clinical excellence? Just underneath, there is a "neurological disorder" category, which would be more fitting. In an ideal world, of course, there would be a "Developmental" category too. It feels to me like a massive facepalm for raising awareness. Years of trying to make people aware that autism isn't a mental illness, only for NICE - of all people - to suddenly make a ###### up that people will see as validation of that fallacy.

I am 28. I was diagnosed two years ago. Was I relieved? Yes. Absolutely. It has changed my life for the better - greater understanding, insight, support, acceptance etc. I am very open about my diagnosis. I've lost friends because of it, but the way I look at that is that if something as small as a label dictates how they choose friends despite their previous experience, then perhaps I am better off without them. On the other hand, it took me a very long time to come to terms with feelings of great frustration and resentment. For many, many years I just *knew* that I wasn't NT. I didn't know anything about ASC back then, the concept of NT, etc etc. But I KNEW that I was different. Despite many years of trying to express myself to doctors etc, I never felt as though I was being listened to. Growing up, I was subjected to horrendous bullying and parental abuse because I didn't "fit in". When I received my dx, the feeling of relief was intermingled with anger that it could and should have been recognised much, much earlier if many professionals (and we really are talking in terms of at least double-figure numbers here given things like moving homes and other issues) had the proper awareness. It was pure luck that I was eventually referred for a dx and went through that process. It felt like a lottery. These days I feel as though my life is now in my control. I have a dedicated NHS consultant who I see regularly to talk about issues and formulate coping strategies. My "label" has led to access to things such as DLA and additional protection in employment where previously I would find it extremely hard to keep down a job because my difficulties would just be seen as "undesirable personality traits" (and that was from a certain public health organisation that employed me). I am able to explain, if I so choose, to friends and colleagues - minimising misunderstandings and preventing potential problems, and improving my success at social ineraction. After a history of short-term, failed relationships I now have a life partner, and because of the intervention and support I receive they now also act as my carer to minimise my difficulties in certain situations. Because of my past experience and my knowledge around ASC, I am now also very active and passionate about ASC awareness, training, discrimination, etc. I am proud to say that I have managed to help many people who have had similar experiences to myself, who themselves have since managed to access support, DXs etc. I have successfuly challenged practices that excluded people on the spectrum from being treated equally in areas such as employment and provision of services. I am now working on designing an autism-awareness course in my workplace so that all staff have a basic knowledge of autism and how to approach those on the spectrum. We have come so far compared to where we were just a few short years ago. And we have much further to go as well. My ideal goal is that I want to see the day where noone on the spectrum ever has to experience the sort of problems that I did. I think we can get there, but only if we all stand up and fight for it. Sorry if I have rambled :-)

Yes this is definitely something that I am extremely concerned about. I would like to think that there will be a degree of common sense and that people with lifelong, incurable conditions will be excluded from these "reviews". I'm also concerned that we will fall down a slippery slope and eventually have to complete an annual review. It's already hard enough as it is to get DLA in the first place because of people's ignorance - I really worry that the same ignorance will lead to huge amounts of anxiety and loss of services because people are not appropriately assessed and these concerns really do need to be highlighted before we end up with a majority of legitimate claims being impacted because a few very clever people have managed to play the system. It's one of the things that I am going to write to my MP about to see if I can get a clear answer - but then, he also refused to give any sort of support to the last NAS employment campaign, telling me that the tories are dedicated to cutting the numbers of disabled people receiving benefits rather than provide additional support (yes, I have this in writing), so I'm not hopeful.

I agree - it seems very inappropriate, especially as R is at an age where we will not really have the capacity to understand the necessity for you to divulge this sort of information. Is this a LA-funded or private organisation? If it's LA-funded and you are concerned that this might reoccur (not just with yourself but another family), I would really recommend flagging your concerns. The sad fact is that many private companies will brush it under the carpet. But, I would wait to see what their response is to your comments (and perhaps ask for detail on what they plan to change). If you still have concerns further down the line, perhaps spring a surprise visit on them so you can see for yourself the sort of methods they use.

I can't stand those really annoying "no win no fee" adverts, especially the ones that have that guy who used to be in The Bill being really melodramatic and overly serious, or Esther Rantzen being overly patronising. All those over-50 life plan ones irritate me as well. They really prey on people's fear.

Hi everyone, Thanks for your responses! Luckily, the issue is now resolved. I had a conversation today with one of the instructors who actually runs the Breakaway training. He said that he had been "quite angry" when he had heard that they were trying to force me to participate in the training despite my difficulties, especially as they had previously said that I didn't need to participate. It turns out that while I may be required to very occasionally visit a ward, it will always be escorted, probably for no more than 5 minutes at a time and I would never be in an area that a patient would have access to (in essence, they exagerrated the risks to "scare me" into taking the training without considering my difficulties proerly). Therefore, the training has been determined to be non-mandatory for me and I am most definitenly non-clinical staff. He did seem genuinely annoyed about the whole situation and it turned out eventually that he conducts a large amount of work on one of the Autism wards, so he had a very good knowledge about the various sensory problems that occur. I've been reassured that it won't happen again and I've been told that I am going to get an opportunity to speak to someone in charge of staff training about the possibility of developing/working on an Autism Awareness course for staff. Phew!

Further to my previous post, I've looked into the Autism Act in more detail. I found this quote here: <i>The Government has committed to amending the Children and Young People’s Plans (CYPPs), which are the key strategic planning tool for local authorities, as the Bill had suggested. Through a different Bill, called the Apprenticeship, Children, Skills and Learners Bill, the Government will place a new legal duty to ensure that local areas collate and share data on disabled children as part of their CYPP needs assessments and include children with autism in their plans for children's services. Ministers also made a commitment that the statutory guidance that accompanies these duties will state that autism must be specified as a specific category on these registers.</i> This seems to show that there will need to be commitment that specifically adresses the needs of Autistic Children to compensate for the fact that existing legislation (such as the DDA) often ends up excluding those with ASD needs.

Does he have any particular sensory difficulties (particularly certain sounds/sights)? I have some difficulties with some sounds (in my case, loud and/or high-pitched) and prolonged or regular exposure can give me splitting headaches. I've also found that, if I'm engaged in prolonged or particularly fast/intense verbal discussions, the sheer concentration involved in trying to process everything can give me a headache. Think of it like a computer - if it's only doing small, simple tasks it's fine, if it's doing more intensive tasks then it copes ok for short periods, but the more it needs to do and the longer it needs to do it for can eventually cause it to crash and cause problems. Try and identify when he is having the headaches and look at what he was doing at the time or immediately before and you might be able to find the cause. If he always gets them after a busy day for example it could be that all of that processing of information has become too much - we've all heard the expression that thinking too much can make your brain hurt!

Do you know if he has a consultant? i.e a professional expert on AS that he sees on a regular basis? I'm an Aspie and I am in a relationship with an NT, and while we have (so far and through a lot of trial-and-error and education) a pretty good understanding of each other and what is/isn't needed in terms of communication, personal space, etc, I found it very helpful to introduce my partner to my consultant. This was helpful for me, because my consultant was able to give advice or an alternative view for some of the issues we have, it was helpful for my partner because they had an expert to talk to that might have more insight, experience and ideas around my differences than I might have myself, and it was certainly helpful for my consultant, who has since "worked in" regular updates regarding our relationship and how we can work around any new issues that crop up as time goes on (and there will ALWAYS be new things, no matter how long you are in a relationship or how long you have lived with AS!). Just an idea.

Hmmm. I can't think of any medication. All the medication I have ever tried has never been effective at dealing with Social Anxiety. Some cognitive behaviour therapy has helped a little, and through both the help of my carer and my psychologist I now have some coping and management strategies that work in *some* situations. However, these are personally tailored to my own needs so it's debatable as to whether they would help you at all. My next answer would, of course have been alcohol, which you've already mentioned (it's amazing what a glass of wine can do to calm the nerves!). Hmmm. Some herbal teas with a soothing/relaxing method might help - or indeed any sort of food that promotes the release of endorphins. Endorphins are our body's natural way of providing pain relief and they also give a sense of well-being and help relaxation. You can "encourage" the release of endorphins in your body by, strangely enough, clenching/unclenching your jaw and gritting your teeth (ever wonder why weight lifters always grit their teeth? It's not just because the weights are heavy!). Chocolate is also commonly mentioned as containing a natural endorphins as well. The only other thing I can think about to do with flying is trying to keep your mind off the fact you are on a plane - listening to a walkman, reading a book, watching a film (if you have a laptop or something like an ipad), maybe playing computer games. I find taking something along to do with my special interests can help - I'm soon engrossed and pretty much forget about anything else. Sorry I can't be more help - I know how horrible it can be!

Well done! The form is a total nightmare to get through, especially as many of the questions just aren't relevant to ASD and quite often the information that IS relevant doesn't seem to fit into any of the stuff they ask about. I think they have a target of assessing within 12 weeks. However, that can be delayed if they decide to gather more information from doctors, psychologists etc. Also, without wanting to alarm you, they may turn it down no matter how much supporting evidence you give them of the difficulties you/your child has because of your condition. This happened with me, so I needed to go through a lengthy appeal process because very often, unless you use specific words or phrases they will not take into account how difficult some things are - unfortunately DLA claims are very often assessed by people with no knowledge of the condition being claimed for (for example, they originally rejected my application saying that I was claiming under anxiety. They had to be reminded via a very lengthy letter and an additional supporting letter from my psychologist and my carer as to what an ASD is, before finally awarding DLA. And even then, the level they afforded was still very low considering my care needs and I am currently going through ANOTHER appeal to again tell them that they still haven't taken on board all of the information that they were given right from the start. This problem is particularly prevalent as the forms are very strongly biased towards physical impairments). HOWEVER, as I said, I don't want to alarm you and it may well be that everything goes right first time around for you :-)

I would really like some comments on this! No matter how silly you might think your idea is, it could help :-)

I think it is aimed mainly at adults in the specifics, but my understanding from everything I have read is that it is aimed also at improving provision and access to services, as well as mandatory awareness training for various organisations and public bodies, so as such aspects of it could be seen to be all-encompassing. I think that a lot of the specifics haven't been worked out yet and will be in the strategy, which should be published later this year. May be wrong though!

Yep! My loves are Nine Inch Nails (NIN), Tool, Manic Street Preachers (generally their earlier punk-y stuff), Muse, Radiohead, Bowie, and loads more. Mainly NIN though - it's one of my special interests

While I am not a parent, I am however an Aspie. For many years prior to my diagnosis, I would repeatedly speak to GPs and others in the medical profession because I had concerns over some difficulties I was having in certain areas - sensory issues, anxiety in social situations, constantly feeling like I was "different" to other people and therefore always feeling that I didn't fit in anywhere. Every single time, the doctor in question would simply say "oh, you're depressed" and write a prescription for anti-depressants. I always felt that I was not being listened to. Since my diagnosis nearly two years ago (which was obtained when I basically made such a large fuss about not being listened to), my GP has continually attempted to make me accept prescriptions for anti-depressants (fluoexetine, citalopram, and even tranquilisers on some occasions), despite the fact that he is aware of my diagnosis and has admitted that he has no professional knowledge or experience of the different problems AS can cause. Luckily, I have a clinical psychologist that I see on a regular (fortnightly) basis and they have advised me that I don't take anti-depressants because, frankly, depression is not the problem and this is why I have never felt that they have helped. In short, my GP continues to put me on antidepressants despite my objections and attempted explanations, but I don't take them.