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.

Am I right in thinking that the Autism Act and accompanying strategy means that all Local Authorities will HAVE to address things like this? After all, it would be a bit silly having legislation in place to improve Autism services and awareness if authorities aren't obliged to do so. EDIT - I'd also be concerned if they hadn't already started thinking about how to fund and comply with the Act when it comes into force, given that it's been well known about for quite some time now...

Same here. On a good note though, the little email I received in my inbox saying "inikey has sent you a message" reminded me of this site's existence just as I needed some help on something! Every cloud has a silver lining, etc

Hi everyone! After 7 months of waiting to start my new job (long story - bad GP not recognising my AS diagnosis), I am finally having my induction week. I have several things that I would like to ask for people's thoughts on, but one in particular that is causing some issues. Basically, I am working for a Mental Health hospital. Up until now, I have always been told that my role was based in an administration building and would not involve any contact or interaction with patients in the wards. Because of sensory difficulties I have with physical contact, I did not actively take part in the "breakaway" training (which involves practically demonstratiing your ability to escape from holds, grabs etc). The instructors and the person running the induction were fine with this because, as mentioned, to the best of all our knowledge I will not be in a situation where these skills would be required. Now, the problem is that it has since been stated by my line manager that I will in fact be classed as "clinical staff" and will therefore need to be present in patient wards on a regular basis and that, because of this, it is mandatory for me to participate in the training. Of course, this will cause me difficulties because, unless under very specific circumstances, I cannot tolerate touching or being touched by people (whether that be light touch or firmer touch), particularly if I do not know them. Therefore, the two issues appear to be mutually exclusive - I cannot complete the training because I cannot tolerate being touched, but I cannot perform my role without completing the training. Does anyone have any ideas on how we might be able to resolve this issue? I did observe the training and the techniques used, but apparently it cannot be listed that I have "undertaken" the course unless I physically engaged and demonstrated the techniques on another person. I would just like to point out as well that my employers were aware that I had sensory issues surrounding physical contact prior to offering me the job! I do have a life partner, who also acts as my carer, and through a lot of experience, discussions and trial and error we have managed to overcome some of the problems with physical contact under very controlled (and brief) circumstances; unfortunately, it would not really be practical for them to act as an "intermediary" in this matter as they have their own job. We need to resolve this as I am due to start my job "proper" on Monday but can't until I have completed this training. Any help would be greatly appreciated! In addition, I was not contacted prior to this induction week to be informed what would be involved and to discuss any potential problems/adjustments that may be required for this introduction to the job- that's why this issue hasn't been able to be dealt with until now (among several other issues that could have been prevented had we known in advance what exactly would be involved this week). I feel that this is down to a general lack of awareness of the sort of issues that an ASD can cause rather than any deliberate exclusion (which might sound strange in a Mental Hospital that has dedicated Autism and Asperger's units), and I have noticed that there is no "autism awareness"-style training provided to staff. Would this sort of thing perhaps be covered in the Autism Act?

Good evening Smiley, please join the group on Facebook if you are a member on that site. The more that join, the sooner I can start to organise something where we can all get to know each other and feel a part of something!

Hi everyone. I was not sure whether to post this in this forum or in the "Help and Advice" forum, or even elsewhere so please forgive me. Having recently received my final, official diagnosis of Asperger's Syndrome, one of the first things that I was asked following my diagnosis was "do you have any questions?" The first thing that I wanted to know was whether there were any social or support groups (or any other descriptive term you would care to use) for Adults with ASD's in Northamptonshire. His answer was, unfortunately, "Not that I am aware of." He also stated that it was a question he was asked by nearly every adult he diagnosed with an ASD in this county. In light of this, I have created a new group on Facebook titled "Adult ASD in Northamptonshire". I want to provide a space where like-minded adults can meet, socialise and make friends without the difficulties which can often present themselves when we are surrounded by NTs. This group will be, initially, to give us the opportunity to meet each other and feel accepted in a non-judgmental environment. Once I have sufficient members (currently I am setting a threshold of 6-7 minimum), I will attempt to locate a suitable meeting venue (through discussions with members) to ensure that we are able to share our experiences, thoughts and ideas in the most comfortable way possible. If the group is successful, I would like eventually to perhaps look at obtaining guest speakers or organising other events. My Facebook username is Dale Christopher Morgan, if that helps people to locate the group. I have also started to look into the notable lack of support for Adults on the Autistic Spectrum in the UK, and I would like this to be one of the first topics of discussion within the group. It is my experience, and the experience of others that I have met on the spectrum, that the government could do a lot more to improve our access to appropriate services and support, as well as raise awareness. I have been in contact this evening with one high-profile name that I hope may be able to give me advice on this matter but, of course, I do not want to discuss anything in case this "avenue leads to nowhere" (I tend to put metaphors, similes or analogies in quotes for easy recognition). Please feel free to give your thoughts on the matter. Anyone is free to join this group on Facebook, or attend any meetings that take place. Thank you, Dale.

Hi everyone. Last night I asked whether or not I should disclose AS prior to a job interview, both on here and on another site. The majority of responses I received said that it would be better to disclose it, and so I have constructed a draft letter to attach with a job application. Could people have a quick read and give me some feedback please? Many thanks Letter follows: What is Asperger?s Syndrome? Asperger?s Syndrome is a form of Autism. The main difference between Asperger?s Syndrome and ?classic? Autism is that people with Asperger?s syndrome normally have average or above-average IQ?s, lack many or all of the learning disabilities often associated with Autism, and show little to no delay in the development of language. While Asperger?s can cause some difficulties with social communication, many of its defining traits can also be desirable qualities for an employer and often the traits associated with Asperger?s are not immediately obvious to others due to the increased ability to learn methods of compensating for certain difficulties. How could I benefit this company? I am an incredibly logical thinker. Whereas some people may find their thought processes influenced or distracted by other concerns, I find it very easy to ascertain the cause of a problem and possible ways to a solution through logical deduction. This means that I can often find a solution that others may not have considered or dismissed out of hand, or a way to alter or adapt an existing procedure in order to make it more efficient (and thus boost productivity). I also have a very good understanding of logical systems such as mathematics and computers and am able to pick up new skills in these areas incredibly quickly and apply them in ways that others may not have considered. This ability to ?think outside the box? has been essential in my most recent role as I have utilised unconventional ways to fulfil a complicated database design brief with limited resources. I work incredibly well to schedules and deadlines, more so than working on more ?flexible? time frames. Having a schedule or work plan helps me to plan my tasks and prioritise them, and gives me greater focus on the task at hand. I will often go out of my way to ensure that a task is completed on time even if that requires working additional hours. This dedication will extend to minor as well as major tasks. I am very clear when communicating my ideas and suggestions and explaining the underlying reasons behind my ideas. I will never pursue an idea for ?the sake of it?, I will only ever propose something if I can see a clear benefit in following my suggestion and I will always ensure that I am able to explain my reasoning. By doing this I have managed to implement many policies and procedures in my most recent role in order to close a lot of gaps in information capturing and recording. I find it incredibly easy to see patterns in large volumes of data. I can then very quickly cross-reference these patterns with other data and quickly establish underlying causes and links. This has been very useful in my most recent role as it has allowed the department to justify its spending in certain areas and to project their future position. I work incredibly well under my own supervision. As long as I have a clear task to complete, I am able to work with a high level of focus and dedication. I am very honest: If I do not completely understand what is expected of me, or I have doubts as to my ability to complete a task, I will always ask for clarification and guidance rather than attempt to ?fly by the seat of my pants?. This can avoid wasted time producing work which later turns out to be unsuitable. This honesty also extends to informing management if it is not possible to complete a piece of work in a given timeframe, ensuring that all parties are aware of what is reasonably possible (and also providing suggestions on how to make meeting those timescales easier) in order to minimise disappointment or frustration. What may I find difficult and how could someone make adjustments? I find it very difficult to establish or maintain eye contact. Some people may associate this with rudeness or boredom, but it is not. I am simply not comfortable in this particular area. Please do not be offended or think that I am bored if I do not maintain contact with you. I may also focus more on the mouth than the eyes, as it can help me to interpret what is being said to me. I can have some problems understanding or answering questions that are not specific or deal with abstract concepts, particularly some of the hypothetical questions sometimes used in job interviews (i.e., ?what would you do if..??). Please do not be offended if ask for clarification on certain points or take some time to consider my response! I do not always notice body language and tone of voice and how it can change the meaning of what is being said. Therefore, I may interpret a statement differently to how it was intended. Please try to be very clear and concise. Be careful when asking me about my interests ? I can talk about them endlessly without always realising when to stop! I am very sensitive to high-pitched noises, low rhythmic humming and flashing lights. These can cause me to become distracted or anxious. I will perform far better in interview if I am in a relatively ?plain? room. I would like to thank you for your time in reading this and I sincerely hope to hear from you soon.

Thanks Zaman - a lot of answers I have received from friends, msn contacts and comments on my blog have said I should disclose. I think I will write a brief accompanying letter, but try to frame it in such a way that I focus on the assets (logical thinking, good with routines and schedules, computers, etc) instead of highlighting the difficulties.

Hi everyone. I found out on Monday that I am being made redundant and have been busily applying for jobs. However, I have always found job interviews very difficult and usually fail them (hence why I have mainly worked as a temp - often they do not interview!). I find it really difficult to maintain eye contact, it takes me FOREVER to think of how to answer, and of course, the inevitable "what are your interests?" question usually leads to a massive monologue (though not as bad as it used to!). The question I want to ask is whether or not I should disclose the fact that I have AS or not prior to being interviewed? I have read a lot about things but there is no conclusive answer that I can find. Both sides seem to have Benefits, such as: Disclosing AS Pros: AS Traits likely to be accepted more. Advance warning can allow interviewer to prepare and to learn more about AS. Some AS traits may actually be desirable - such as logical thinking, adherance to structure and routine, good skills with computers, maths, etc. Aso, some companies guarantee interviews to people with disabilities due to diversity policies. Cons: Employers may be wary or consider the individual to be "less able", either turning down opportunity for interview or failing the candidate while using an unrelated excuse. Not disclosing AS Pros: Less likely to encounter prejudice/ discrimination. Interviewer may be more likely to see a "person" instead of the condition during the interview. Cons: Aspie traits will not be recognised, leading to the interviewer considering the candidate to be "odd", rude or disinterested during the interview - leading to a failure. What does everyone think? Really really need some guidance on this matter!

Well she was ignoring me completely again today; did not say a word. So I just pinged her an email saying "I am very sorry if I have upset or offended you in any way, it is not my intention. Are you ok?" She did not reply. Oh well. I found out on Monday I am being made redundant anyway. My last day is on Tuesday. So I have much bigger worries on my mind

Hi everyone. I'm 26 and currently on the waiting list for a diagnosis of AS. I am seeing a psychologist also who has said that he is confident that I have AS and has changed the structure of our sessions to being based around the Human Givens (?) approach. When he asked me how I hoped to benefit from knowing I have AS (he says that as far as he is concerned, the assessment in July is merely a formality), I replied that I wanted to understand other people better and for them to be a bit more understanding to me. He suggested that I try to write about it, and I have since posted some blogs on another site which have received a brilliant response - one person said he wants to change the focus of his dissertation on learning difficulties to AS, another hasasked me to help in forming a creative arts group for adults with AS, another has suggested I try to write a book about my experiences, and another said that they had wished they had read the blog 4 years ago when they met their Aspie partner. Anyway, there is a woman at work who I found out has a child with AS. This woman and myself have always had a lot of difficulties (she has been disciplined for making me anxious), mainly as I find it very hard to understand her as she talks very quickly, does not give me enough time to think about how to respond, and to me a lot of the things she says are very illogical to me. So we have ended up becoming very frustrated with each other on a number of occassions. I was very reluctant to inform her about my referral for AS as I do not want to be treated any differently in the office, but I recently thought that, now I know about AS and how it affects me (as stated, I consider myself to be have AS without yet having the 'formal' diagnosis), and that after the success of my blogs, that by letting her read them then maybe she could understand me a bit better and why our communication in the office doesn't work so well (the blogs in question were a 4-part series discussing communication problems between Aspies and NTs). So I printed off the blogs, along with a letter explaining everything (only my boss in the office knew about the AS referral and that I am receiving support based around it), and saying that I hoped it would help us communicate better and that I thought she may find it interesting, having an Aspie child, to read something from the perspective of an adult on the spectrum. I then placed them in an envelope on her desk labelled "a gift".I saw her pick it up as she left for the day so I know she had it. This morning I pinged her an email (I communicate mainly through email both at work and at home. I just find it a lot easier, and it is something I discuss in my blogs as well) asking her if she liked her gift. I did not get a reply and she did not say anything to me for the entire day (she is usually quite chatty). I am a bit worried now that perhaps I have made one of my legendary social errors and if anyone could give me some advice? I'm getting quite anxious because I am worried that perhaps I have offended her or angered her, or that perhaps she may think I am making excuses. Have I made a mistake? How could I go about approaching her?