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Thompsons

I had my assessment yesterday..

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Finally, I had my assessment at the Maudsley Hospital in London. It took about 5 hours.. It was very thorough. And I have now been officially diagnosed with Aspergers Syndrome. I think I feel relieved more than anything. Everything feels like it's fallen into place now. The team that diagnosed me couldn't understand why it had taken this long, since I've had behavioural problems from the age 4 when I was expelled from my pre-school. Even just a couple of months ago, my psychologist didn't seem to be accepting the possibility of Aspergers because I have a good sense of humour :blink:

 

It was a loooong day yesterday.. Mentally exhausting. We had to go by train also, which was unpleasant, especially on the way back, because it was so busy, and we were all crammed in the train, so I felt a little freaked out by that, and there was quite a bit of waiting around whilst my Mum was spoken to also.

 

The only thing that I am quite concerned about currently, is that they have told me that they think I would benefit from being an inpatient at their sister hospital, Bethlem. They said they thought that it'd help me get things moving and get out of the rut that I'm currently in. Everything that was explained to me sounded very good, and reasonable, but the thought of staying in hospital is really scaring me.. I find it difficult enough going on hoilday with my family, but staying in a hospital I've never been to before with people I don't know is really terrifying :( Does anyone have any experiences of being an in patient that they could share with me?

 

Kimberley x

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JsMum   
Finally, I had my assessment at the Maudsley Hospital in London. It took about 5 hours.. It was very thorough. And I have now been officially diagnosed with Aspergers Syndrome. I think I feel relieved more than anything. Everything feels like it's fallen into place now. The team that diagnosed me couldn't understand why it had taken this long, since I've had behavioural problems from the age 4 when I was expelled from my pre-school. Even just a couple of months ago, my psychologist didn't seem to be accepting the possibility of Aspergers because I have a good sense of humour :blink:

 

It was a loooong day yesterday.. Mentally exhausting. We had to go by train also, which was unpleasant, especially on the way back, because it was so busy, and we were all crammed in the train, so I felt a little freaked out by that, and there was quite a bit of waiting around whilst my Mum was spoken to also.

 

The only thing that I am quite concerned about currently, is that they have told me that they think I would benefit from being an inpatient at their sister hospital, Bethlem. They said they thought that it'd help me get things moving and get out of the rut that I'm currently in. Everything that was explained to me sounded very good, and reasonable, but the thought of staying in hospital is really scaring me.. I find it difficult enough going on hoilday with my family, but staying in a hospital I've never been to before with people I don't know is really terrifying :( Does anyone have any experiences of being an in patient that they could share with me?

 

Kimberley x

 

 

Hi Kimberley

 

Firstly it must be a big reliefe to know that you have AS, as for the train, I only found out this holiday after J had a real big meltdown from sensory overload on the train when we were told about the Disabled Rail Card, if you look into Disability Living Allowance and if you get middle to high rate care, then you can get a Disabled Rail Card, there is benefits of traveling cheaper on the first class with discounts, and first class would offer quiter and more comfortable areas, there is also station assistance too, so please do look into this next time you travel.

 

As with the hospital, I dont think it will be anything like a hospital your imaging, there mostly like hotels now, comfortable and relaxed, its possible they need to arrange care plans and agree what support you require, they wouldnt recommend hospital unless they really felt you required it, but they wont do anything against your will if the addmission is informal, this is when you go in voluntarily.

 

Im surprised they didnt give you further information on the hospital, it maybe that the hospital provides more intensive therapies or group councilling, or gives you a safe place to rest and recooperate and get you health back on track, take this time to rest and get as much help and support as possible.

 

I wish you the very best to maybe what might feel like the beginning of your life.

 

As a person with AS.

 

Luv

JsMumxxx

 

 

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Hi Kimberley

 

Well done on going through the assessment, it must have been a very long and exhausting day! I imagine it must be a relief to have an actual diagnosis and at least now you can move on and access appropriate support.

 

I have a fear of hospitals so understand where you are coming from, but I have never been an inpatient either- I guess maybe your mum or other family can visit you lots? Sounds as though it could really benefit you and I'm guessing that you could discharge yourself at any time so could be worth a try?

 

Good luck with whatever you decide to do!

Steph

 

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Sally44   

I would only add to what has already been suggested by having a word with your mum about what aspects of being an in-patient are worrying you. You maybe able to look at what the hospital is like on-line. Or if you are concerned about the people you will meet you maybe able to meet them in a different place, or just have a meeting with them to get to know them before you actually go in. You may also be able to visit the hospital and have a walk around before you go in to familiarise yourself.

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Thank you all for the replies. :) Sorry it's taken me a little while to get back to you all; I've been really busy!

 

I have since spoken on the phone to one of the specialists that diagnosed me, and she has said that she will send all the relevant information through the post and then I can look at it all and then look around the hospital also if I would like. She said that there is a doctor with a lot of experience with treating people with both Aspergers and OCD co-morbidly and that she's quite keen to see me.

 

I am trying to take all the positive things into account also - it would be great to finally move forward with things. I am having CBT at the moment, and while it is helping a little, I've been told that going into the hospital would be even better.

I just hate the changes.. It scares me just thinking about it. I find it very difficult to eat and sleep away from home also. I even have trouble sleeping if my Mum has moved something in my room, so it just feels like a really overwhelming thing right now. I guess it doesn't help that I do associate hospitals with terrible things (my Mum had leukemia when I was a child) and so I have this rather distorted view of it all.. I have been told that it is far more like a hotel than a hospital. So maybe, when I get all the information through, I'll feel better about it.

 

Also, I just wanted to mention that my social worker (she's been trying to get me involved more in the community) decided that it might be a better idea to attend a group with people my own age. Which was awful, as I get so intimidated by people my own age. But I went.. And I stuck it out. This group of young people all have mental health issues, so I was told that I would fit right it.. Yet, I was still sat on my own at the side of the room. I dunno, I just felt disappointed. They were all talking about the stuff they all do together i.e going to concerts, etc. Just the thought of going to a concert with people my own age makes me feel sick. And the group leader said, that everyone feels a little nervous when we haven't done something like that before.. I know that. But it's not just that. I hate crowds. I can't even go to the supermarket. I can't stand loud noise. And I am highly uncomfortable around people my own age. I just felt like the odd one out still. Is it normal to feel that? Do you think I'll settle in? I feel like I have nothing in common with people my own age. They were all talking about TV shows and stuff and I had no idea what they were on about.. I'm worried that they'll think the things I'm interested in are stupid or 'uncool'. :(

 

Sorry for going on.. Thanks again for all the helpful comments!

Edited by Thompsons

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JsMum   
Thank you all for the replies. :) Sorry it's taken me a little while to get back to you all; I've been really busy!

 

I have since spoken on the phone to one of the specialists that diagnosed me, and she has said that she will send all the relevant information through the post and then I can look at it all and then look around the hospital also if I would like. She said that there is a doctor with a lot of experience with treating people with both Aspergers and OCD co-morbidly and that she's quite keen to see me.

 

I am trying to take all the positive things into account also - it would be great to finally move forward with things. I am having CBT at the moment, and while it is helping a little, I've been told that going into the hospital would be even better.

I just hate the changes.. It scares me just thinking about it. I find it very difficult to eat and sleep away from home also. I even have trouble sleeping if my Mum has moved something in my room, so it just feels like a really overwhelming thing right now. I guess it doesn't help that I do associate hospitals with terrible things (my Mum had leukemia when I was a child) and so I have this rather distorted view of it all.. I have been told that it is far more like a hotel than a hospital. So maybe, when I get all the information through, I'll feel better about it.

 

Also, I just wanted to mention that my social worker (she's been trying to get me involved more in the community) decided that it might be a better idea to attend a group with people my own age. Which was awful, as I get so intimidated by people my own age. But I went.. And I stuck it out. This group of young people all have mental health issues, so I was told that I would fit right it.. Yet, I was still sat on my own at the side of the room. I dunno, I just felt disappointed. They were all talking about the stuff they all do together i.e going to concerts, etc. Just the thought of going to a concert with people my own age makes me feel sick. And the group leader said, that everyone feels a little nervous when we haven't done something like that before.. I know that. But it's not just that. I hate crowds. I can't even go to the supermarket. I can't stand loud noise. And I am highly uncomfortable around people my own age. I just felt like the odd one out still. Is it normal to feel that? Do you think I'll settle in? I feel like I have nothing in common with people my own age. They were all talking about TV shows and stuff and I had no idea what they were on about.. I'm worried that they'll think the things I'm interested in are stupid or 'uncool'. :(

 

Sorry for going on.. Thanks again for all the helpful comments!

 

Is the group your local NHS group or operated from the mausley hospital?

 

Is there anyone else in the group with AS?

 

It could be the person who is facilitating the group has no idea of what AS is like, sounds like it to me, maybe she has more experience of the agrophobic not wanting to go out anywere but not someone who has sensory issues to going out.

 

It sounds like it is still not meeting all your needs and maybe another meeting is required, as all this meeting with the group is doing is making you feel ostisized, isolated and in a way rejected, and its obvously not working for you, so I would request an emergency meeting to discuss the benefits of having such a group that you dont feel any belonging to.

 

I hope that the leaflets of the hospital relieve your thoughts and I thinks it is very important that you share your experience of your mum been in a hospital for her leukemia, it sounds like that it could possibley be what is called a post traumatic Stress disorder, leaving you with long term emotional difficulties, again the hospital will help you with this.

 

Are you allowed to take anything with you to personalise your new room when you go into the hospital, buy some nice cozy bedware, like a fluffy nightgrown, a nice new nightdress or pjs, some fulffy slippers, some posters for the wall and mobiles and lighting to make it more your space.

 

What the hospital will give is a safe place when the cbt and other treatments start to open up difficult emotions and it sounds very important that you have it as an inpatient, this will give you a safe enviroement as dealing with therapies it can be very difficult to cope with alone, the staff and the hospital if its comfortable and nice will really help you.

 

Let us know how you get on.

 

JsMumxxx

 

 

 

 

 

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Thankyou JsMum :)

 

The group isn't anything to do with the Maudsley hospital, it's just a local NHS group for young people with mental health issues and drug addictions.. Most of the people there, suffer with depression, which I do understand, but that's as far as the similarites go, I'm afraid. There is no one else with AS.. Just depression, bi-polar, and drug addictions. I was told to attend to get me more socialised with other people my own age and also to discuss my OCD and depression.. But that was it.. I've been told that AS does not come under 'mental health' and that they do not deal with autism spectrum disorders. So I do feel like the group leader is completely disregarding the fact that I have AS. They honestly don't even mention it, it's like they don't want to know :huh:

 

I'm going to try not to worry too much and wait on all the information to arrive. Thank you again for being so helpful - I feel like I can see things from a much clearer perspective now :)

Edited by Thompsons

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Tally   

It might be worth persevering with the group even if it is not ideal. It should be a group of people who are more tolerant than the average of people who have difficulty making new friends - even though the reasons behind those difficulties is different. I completely understand why it is frightening for you, but even a group of people with AS is likely to be frightening. Maybe you could try to pick just one of the TV programmes and try watching it so you could make a comment on it next time you go. You could even say that you watched it because they recommended it, because they might be pleased if they suggested something and you enjoyed it.

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Finally, I had my assessment at the Maudsley Hospital in London. It took about 5 hours.. It was very thorough. And I have now been officially diagnosed with Aspergers Syndrome. I think I feel relieved more than anything. Everything feels like it's fallen into place now. The team that diagnosed me couldn't understand why it had taken this long, since I've had behavioural problems from the age 4 when I was expelled from my pre-school. Even just a couple of months ago, my psychologist didn't seem to be accepting the possibility of Aspergers because I have a good sense of humour :blink:

 

It was a loooong day yesterday.. Mentally exhausting. We had to go by train also, which was unpleasant, especially on the way back, because it was so busy, and we were all crammed in the train, so I felt a little freaked out by that, and there was quite a bit of waiting around whilst my Mum was spoken to also.

 

The only thing that I am quite concerned about currently, is that they have told me that they think I would benefit from being an inpatient at their sister hospital, Bethlem. They said they thought that it'd help me get things moving and get out of the rut that I'm currently in. Everything that was explained to me sounded very good, and reasonable, but the thought of staying in hospital is really scaring me.. I find it difficult enough going on hoilday with my family, but staying in a hospital I've never been to before with people I don't know is really terrifying :( Does anyone have any experiences of being an in patient that they could share with me?

 

Kimberley x

 

 

Good for you, may I ask how old you are? just I am wondering if you are an adult with aspergers, as I am an adult who thinks I may have aspergers

 

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Thank you for your advice Tally :) I'm going to go back on Thursday and give it another go. I think I dwell on things too much, I need to just give it a bit more time and effort and we'll see how it goes.

 

Scotsguy80 - Thanks :) And I'm 19 years old.. How old are you, if you don't mind my asking? I suspect my Dad has Aspergers too (he's 43) but he doesn't want an assessment for whatever reason.

Edited by Thompsons

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