Can you give me some feedback on this idea?

[Laz]

Hello i'd just like some feedback on an idea i have been floating around the various professionals here in sheffield and at my school of nursing and midwifery at sheffield university.

 

Just a quick abstract intro as ive not made many posts on the forum. Im 25 yr old nurse student with AS (diagnosed back in 1992 by prof Howlin@St Georges London) im originally from Hertfordshire/London. Ive been living in sheffield since 2005 and im due to qualify as an RNLD (Registered Nurse Learning Disabilities) in May 2008 looking to get work focused on autistic spectrum.

 

Ive been circling an idea around the various parts of sheffields services that come into contact or provide services for people with aspergers including

 

A) Autism Centre at Sheffield Hallam Universy (Luke Beardon)

Sheffield NHS Trust --> Community Learning Disability Team

 

And sometime this week im going along to meet the local asperger parents action group here in sheffield.

 

The idea has come from what Ive heard as ive gone through my trainning, my own personal experiances of discrimination and other asperger friends experiances.

 

Basically im looking to provide a kind of Guidance/mentor service for people with aspergers. There basically is nobody for AS at the moment, you fall between Mental health and you fall between Learning Disability services. Neither of them feel their responsible for you (though to be fair the LD side are more sympathetic then mental health who have alot of catching up to do)

 

From what ive gathered the diagnosis process seems to end in roughly the same outcome that happened to be me back in 1992. You basically get told you have aspergers (or your parents) and then thats it. Nothing, go back to the GP, they shrug their shoulders or get token gestured to a parent support group etc.

 

What I propose is that newly diagnosed person with asperger or parents come into contact with a guidance/mentor team consisting at its core a person with aspergers themselves who has been diagnosed for a few years had some experiance under there belt in relevant services and trainning. The goal would then be to help the individual with aspergers understand and come to terms with the new knowledge they have been given from the diagnosis and i want to really offer something that gives a person relevant and apporpriate advice and guidance in all aspects of their life. A hollistic approach if you like.

 

Key areas that I would like to get involved in would be

 

A) Helping people build skills for life and the work place e.g. confidence building, assertive communication, understanding social situations. Im after building a person up to be independant.

Work, train and build professional relationships with other services to promote an understanding of the needs of asperger individuals, though some organisations do this already. Theres still alot of discrimination out there

C) Personal issues. One to one in confidence with someone else who has aspergers talking about relationships, friendships, family situations.

D) Won't just be one person with AS doing this all, this will be a small team. So the AS person is not some kinda super-aspie there is backup. That opens up the range of services that can be provided really that can be geared specifically towards and asperger service. As oppossed to a generic service.

 

Theres a few more I can't think off as im writing this off the top of my head (dont have my paperwork with me)

 

I'd like people to feedback to me

 

1) What they think of the idea (good? Bad? Needed? Not needed?)

 

2) Suggestions on what is needed out there. Let me know where the holes are

 

3) Im primarily aiming this at newly diagnosed asperger adults. Would this be relevant for parents themselves to access? Teenagers? People diagnosed over a year ago who are having problems?

 

All responses welcome

 

If you want to e-mail me

 

sickofish@hotmail.com

or

nra04pfh@Shef.ac.uk

[pearl]

Laz that is an absolutely fantastic idea & I wish you every success with it

[Frangipani]

Hi

 

I think this is a great idea.

 

I think once diagnosed a kit is needed. Containing an easy to read booklet of "What now"

 

I think a good benchmark that you could use is following the guidelines set up for someone diagnosed with Diabete's or Epilepsy etc. Follow what some of these target groups do, and the steps and procedures they take and create one for Aspergers and/or ASD so its like a guided walk in the park and not a maze of confusion. Simple Easy.

 

Recommendations of counsellors, books to read, an easy to read booklet of typically asked, and frequently asked questions. Make it easy. all the what if's answered.

 

The only thing that most professionals avoid is labels and this is why there are two groups 'Learning Difficulties' and the other Mental Health. Parents unfortunately end up in a vacuum of confusion between the two as you have pointed out. Because, from my experience they 'the professionals' dont want to be liable for saying your child has 'XYZ' when in fact they really have 'ABC'. There are more stringent tests available now for adults like the Baron Cohen tests etc. But childhood diagnosis the poor parents often get swamped with information overload, of all the wrong advice, unless they're lucky enough to know the difference. At times you feel like its the blind leading the blind.

 

I wish you all the best with this.

 

Frangipani

[Mumble]

Laz,

 

Sounds good - I have several things to add from my own experience. You may have read some of my experiences with 'support services' and 'professionals' on this forum. I have lots of work to get through this morning, but this afternoon I'm working through a re-appraisal of my needs, so perfect timing. I'll add a reply later this afternoon/evening when I've had time to think about it and formulate my ideas into something coherent.

 

I'm a 28 year old AS adult btw, diagnosed earlier this year.

 

Thanks for pointing me in the direction of this thread Pearl

 

Mumble

[Confusedmum]

Fantastic Idea Laz

 

As a parent of a DD who is currently undergoing assessment at Sheffield Rygate Centre, its fantastic news !!

 

Can i just add that there needs to be more information for parents of children who are going through the assessment, we have had very no info given to us about what is involved. We have had our first appiontment with Pead, Ed psyc and Speech and Laguage we go back on the 29th of this month for IQ test with Ed psyc but after this we dont know what happens next !!, its the waiting that we are finding really tuff, but i do feel that if we just had a contact that knows the assessment process as i know that this is differant depending on what area you live, this would really help!!

 

Just another idea have thought about posting this on the Sheffield local forum to, there are quite a few users on there that have AS or Kids with AS, im sure that you would great deal of feedback from there to.

 

Good Luck xx

[pragmatic]

Great idea.. I would encourage expanding it to parents and adolescents with AS.

 

 

As you know what happens now is just you get told your child or yourself gos Asperger and that is it, both mental health and learning disability are not responsible for AS as it falls out of both nets and many of the support mentors in Uni and colleges don't have much knowledge about it either. Parents go the very hard way tho as they have to find away out and they battle through this process so much. A sign posting easy to follow booklets are very much needed.

[ASue67]

I think it is a fantastic idea!!

 

I would like to see more help and support for parents of children who are dx and their siblings as well and possible more feedback and support for mainstream schools where there are children with ASD.

 

I wish you every luck with it!

 

[Laz]

Thanks for the feedback so far. Parents certainly are a factor in what im hoping to put together. Though primarily i want to focus it on the person with aspergers themselves i realise that alot of parents (mine included) go through alot of hardship and confrontation against the heirarchy and system when trying to get the best for their children.

 

As a parent of a DD who is currently undergoing assessment at Sheffield Rygate Centre, its fantastic news !!

 

Can i just add that there needs to be more information for parents of children who are going through the assessment, we have had very no info given to us about what is involved. We have had our first appiontment with Pead, Ed psyc and Speech and Laguage we go back on the 29th of this month for IQ test with Ed psyc but after this we dont know what happens next !!, its the waiting that we are finding really tuff, but i do feel that if we just had a contact that knows the assessment process as i know that this is differant depending on what area you live, this would really help!!

 

Just another idea have thought about posting this on the Sheffield local forum to, there are quite a few users on there that have AS or Kids with AS, im sure that you would great deal of feedback from there to.

 

Well what a great coincidence i did my 2nd placement at Ryegate.

 

Im actually going along to a social gathering tomorrow (hopefully, moneys abit tight on student grants) that Lesley Judge has organised and im hoping to attend a meeting in september to get to know local parents and fellow asperger people in the area.

 

Coincidentally ive witnessed an asperger assessment done at the Ryegate centre so i have a good idea what your about to go through. You get a range of differnt professionals that carry out an assessment that feeds back into a peadiatrician (forgot the ladies name now) and after you've had all the assessments done they get together and decide on a diagnosis. In the case i was involved with they let the family and child know the outcome on the same day.

 

My advice though would not be to accept there decision as being written in stone, they have made some contraversal decisions with some people in the past.

 

I'll make a note to post it on the sheffield forum. I tried getting hold of a fella who posted on there the other day about his asperger issues but his e-mail add didnt work for some reason

[Laz]

With regards to extending the provision of the service into siblings, parents and teenagers/children. There are a few political, legislative and structural reasons why that complicates things (child protection laws etc etc). Firstly if im working with people under 16 theres a whole more load of paper work involved in setting that up though i understand that it is needed really its going to be just getting this up off the ground that is most important at the moment.

 

I welcome the feedback ive got so far please keep coming i need all i can get really.

 

What im hoping to do is have this tied into NHS/social/education services as a gateway structure for referral. To get to that sort of level requires evidence based arguments. A model/structure of an organisation and ways to check up on it (auditing and all that lovely paper work government throws at you) not to mention ive got to sell this idea to authority for funding.

 

Im trying to get it as an integrated part of the structure rather then being a seperate voluntary/charity organisation e.g. mencap/NAS or prosepects though im open minded to the options that are out there.

[Mumble]

Hi Laz,

 

I'm going to attempt not to make this a Badonkadonk length post ( ) but no guarantees!

 

A bit of background on where I am coming from in this reply and my take on support arrangements. I'm a 28 year old female, I was diagnosed AS, alexithymic and dyspraxic earlier this year. Because I have only recently been diagnosed I haven't had access to formal support during my education and so am now in the process of negotiating support with a great amount of difficulty. I am very fortunate in that the academic staff at my university who I work closely with (I'm doing a PhD - which just about comes under social science subjects which may be interesting to you given your other post with which I totally agree; I fit where I am and so people who say I should be doing a pure maths PhD or studying engineering because I'm AS are not thinking wide enough about the application of my skills and abilities) are brilliant, both in the formal and informal support they give me.

 

I understand that my case is a bit unusual in that I was accepted by my university before my diagnosis so support now is trying to come as an add on, but I am very disappointed by my experiences so far.

 

Prior to geting the diagnosis, I saw various professionals from counsellors to mental health professionals. Whilst I am absolutely sure there are good people in these professions, the people I saw had absolutley no understanding of AS or of the difficulties I was having that I wanted to explore and made me feel absolutely terrible, a freak and a total waste of time. The basic impression I left with was that "what on earth am I thinking, possibly being AS, if I'm doing a PhD, I'm intelligent - can't be anything like that going on". So there's step one where change needs to occur - a far more holistic approach and greater understanding within the wider community of people an AS individual may come into contact with.

 

Getting the diagnosis was difficult and I don't think I would have managed without the support of my university - this is very worrying because there must be other people out there in my situation who don't have that support and who then struggle to get a proper understanding of their difficulties. It's almost as if you need support to get support. A way into that loop needs to be found to support some very vulnerable people. My actual diagnosis, although a horrible experience to go through, was a very positive consultation - SBC was the first person I'd come across outside of my uni who was really willing to listen to me. Being told I was AS etc clearer some of my doubts about being mad etc. but it did leave a huge sense of 'what now'. At the end of my consultation I was given a NAS leaflet imaginatively titles 'what next' for recently diagnosed adults. I read this but found it demeaning and unhelpful. It didn't really tell me what next, but placed me in a category of limiting my possibilities because of my diagnosis. I was already at university, yet the leaflet makes no mention of HE in what an AS adult might do (the only refence to uni was in a weblink that no longer exists). This is where I have to diagree with some other posters. A simple easy booklet may be helpful to parents of young children where the child has just been diagnosed - at a very young age a more general guide is more appropriate as the possible services will be more similar. However, I think that central to adult diagnosis has to be the recognition that the individual adult will already have a variety of life experiences and that they will be unique in their needs. For such a leaflet to be useful to adults, suitable services to be included within the leaflet first need to exist.

 

Having got the diagnosis, I thought that things would get easy - that it would be a key to support services - this isn't the case. That's not to say that the diagnosis wasn't helpful - it helped me to understand myself and it helped the academics who support me to understand me and my needs. But it didn't help in getting the support I thought it would, because that support doesn't actually seem to exist. I suppose that that is where your idea could come in.

 

I had a needs assessment so I know what sort of support I need - there is also funding available to pay for it. This is why I am so frustrated at the moment. I know what I need, there are funds for it, but the type of support I need doesn't actually seem to exist.

 

I tried support through Prospects - I'm not going to go into all the difficulties with the Prospects mentor I had as you can read it in my other threads - surfice to say that even thinking about it is very upsetting to me and it looks like my hand is going to end up scarred. This was totally inappropriate support fundamentally because it didn't take into account that fact that I am an individual.

 

So where does that get us - well the sort of support I need doesn't seem that difficult so I'm so frustrated that the right support can't be found. Basically I need support in:

1. Accessing support - this might seem strange, but I'm not a great judge of character and I am often too trusting - I need someone I can trust to meet my support people and judge them and tell me if they are suitable

2. Academic support - tailored specifically to my needs understanding my course not looking generally - so things like support with presentations, participation with other students

3. Training - suitable individually tailored support for people who will come into contact with me so that they understand me better and my reactions

4. Social support - recognising that if I'm happy socially I'm likely to do better in my course - so support perhaps to make friends, join clubs and societies, and support for aspects like accommodation

Basically im looking to provide a kind of Guidance/mentor service for people with aspergers.

 

What I propose is that newly diagnosed person with asperger or parents come into contact with a guidance/mentor team consisting at its core a person with aspergers themselves who has been diagnosed for a few years had some experiance under there belt in relevant services and trainning. The goal would then be to help the individual with aspergers understand and come to terms with the new knowledge they have been given from the diagnosis and i want to really offer something that gives a person relevant and apporpriate advice and guidance in all aspects of their life. A hollistic approach if you like.

Hollistic is important. As is being relevant. The greatest support I have had outside the academics from my uni has been on this forum. Initially after my diagnosis when I was in a bit of a state of shock I was able to come on here and talk to other people who had been diagnosed both in the past and recently who were able to offer me fantastic understanding and support. They knew what I was going from because they had been there, but they also understand how important it is not to say that their experience is the experience. I think what it comes back down to again is being repected as an individual for what I can do.

 

I think a mentor team, rather than an individual is very important. I have just been putting together a list of what I need, and this is at the core. My initial support consisted of one mentor and this simply didn't work - aside from her inadequacies it meant that there was no one available to plug the gaps if she had had some useful qualities. However, I do think it is importnat that that team communicates together and with the AS adult and that the support is regular and reliable. My mentor just added more uncertainty to my life and I really struggled with this.

 

A) Helping people build skills for life and the work place e.g. confidence building, assertive communication, understanding social situations. Im after building a person up to be independant.

I think this needs to recognise that an adult will already have develped an inventory of coping skills (that may be more or less appropriate). Support has to begin from the individual rather than being placed on an individual. This is one area my support went so wrong - the mentor thought she knew what I needed and couldn't see beyond her description. It has to be remembered that having got through x amount of years without support, any support needs to be sensitive to the individual who may well feel that support could change who they fundementally are.

 

B ) Work, train and build professional relationships with other services to promote an understanding of the needs of asperger individuals, though some organisations do this already. Theres still alot of discrimination out there

This is very important but it is a huge aim. I do wonder if you would be better focussing on one bit (like the mentoring above) and really bringing about sustainable change; there is the danger in doing too much that anything done is superficial without the relevent backup for continuity or long term change. I also think if you were to look at this aim that you need to look very carefully at those who say they are 'aware'. In my experience, the biggest difficulties are with those who think they know and so don't need to listen and learn. People who know nothing are often far more willing to take on board new information.

 

C) Personal issues. One to one in confidence with someone else who has aspergers talking about relationships, friendships, family situations.

This to me seems vital and a type of support I would like to have (something like a real form of the virtual support I get on this forum). I think such support would normally be termed befriending (or buddying at university). The biggest problem here is capacity. From what I have been able to find out, these services are provided on a volunteer basis - befrienders get expenses but do not get paid. If a funded service were available more capacity could perhaps be put in. But I do think the people need to be chosen carefully. There is for instance an assumption that I would get on best with someone my own age or younger (as I have a lower emotional age). This simply isn't true. Whilst there are exceptions, I generally get on better with people older than myself, often more of a parent figure. If I have to integrate with people my own age I get on better with males than females. Things like this need to be considered rather than again having services imposed. But I do think you are on the right lines here - someone who can understand and guide me about things that I am finding confusing that come more naturally to most people.

 

3) Im primarily aiming this at newly diagnosed asperger adults. Would this be relevant for parents themselves to access? Teenagers? People diagnosed over a year ago who are having problems?

I know that many of the people who have replied have said that you should aim at a wider audience. I disagree. That is not to say that I don't think support is needed for other groups - this is clearly the case. However, from my experience, having untailored support creates more problems. I think you need to have a very specific target group and then recognise that there will still be individuals within that group. If that service proved to be successful, then you could adapt it to make it suitable for othe groups, such as parent, children and teenagers.

 

I apologise for the length of this post. This is something so important to me at the moment. I feel really let down by the people who should help me but I am not prepared to give up. There are wonderful people in this world (as my tutors and those on this forum are testament to) who do understand and who are willing to accept me as an individual and to work with me on that basis. I think if I can sum up what is needed very briefly, it would be:

• individually tailored
• taking account of previous life experience

Perhaps these are actually the same thing. To me, being accepted and treated as in individual is key.

 

Mumble the rambler

[Confusedmum]

Well what a great coincidence i did my 2nd placement at Ryegate.

 

Im actually going along to a social gathering tomorrow (hopefully, moneys abit tight on student grants) that Lesley Judge has organised and im hoping to attend a meeting in september to get to know local parents and fellow asperger people in the area.

 

Coincidentally ive witnessed an asperger assessment done at the Ryegate centre so i have a good idea what your about to go through. You get a range of differnt professionals that carry out an assessment that feeds back into a peadiatrician (forgot the ladies name now) and after you've had all the assessments done they get together and decide on a diagnosis. In the case i was involved with they let the family and child know the outcome on the same day.

 

My advice though would not be to accept there decision as being written in stone, they have made some contraversal decisions with some people in the past.

 

I'll make a note to post it on the sheffield forum. I tried getting hold of a fella who posted on there the other day about his asperger issues but his e-mail add didnt work for some reason

 

 

Certainly is a small world Lax,

 

Currently we have had our first appointment with Pead (Sue Gentle) Ed psyc (Sarah) and Speech and lauguage (olly). Our next appointment is on the 29th of August for the IQ testing with Ed psyc, do you know what assesment/s they will need to do next, my DD is almost 5 btw and is about to start school this september.

 

I think i know the guy on the sheffield forum that you tried to e-mail, was the post you saw him on the aspergers thread, have you tryed sending him a personal message through SF. I will keep a look out for your post as i am sure that you will get loads of great feedback there too.

[Tally]

Hi Laz, and welcome to the forum.

 

I am an adult who was recently diagnosed with AS, and I've had absolutely no support or even acknowledgement whatsoever. I definitely feel there is a place for the type of service you are looking to provide. People who have gone through it are probably well-placed to provide this service. Do you think this type of service would get any funding, or would it be a charitable service?

[Laz]

Mumble thats a well thought out feedback im just copy n pasting it to the printer so i can go through it at home and get back to you on it. You've give me a fantastic amount of food for thought

 

Ive just returned from meeting up with the local sheffield parents group im going to do a more formal presentation at the carers centre in the city centre if anyones interested.

 

Tally, the money is definatly out there, no question of that. Ive got alot of encouragement from both the dean of my learning disability nurse trainning at the university. The autism centre at the hallam university, the NHS trusts community learning disability team are really adament i pursue it. From my perspective this is a potential job/career with my qualification i can pretty much invent my own job as its such a tiny part of the nursing profession in this country (literally 4% of nurses off the top of my head)

 

At the very least with the evidence base behind me i could get hold of grants for funding. But Im going to try and see what the options are money wise when i get to that stage

 

This moment in time im simply floating the idea getting feedback and ammending it with whats being said. Getting word out on the idea to as many people as i can both in sheffield and the rest of the UK.

 

Once I get a research critique for september 3rd out of the way the real works going to begin on laying the foundations

[Bagpuss]

Good luck Laz

[Laz]

Currently we have had our first appointment with Pead (Sue Gentle) Ed psyc (Sarah) and Speech and lauguage (olly). Our next appointment is on the 29th of August for the IQ testing with Ed psyc, do you know what assesment/s they will need to do next, my DD is almost 5 btw and is about to start school this september.

 

I think i know the guy on the sheffield forum that you tried to e-mail, was the post you saw him on the aspergers thread, have you tryed sending him a personal message through SF. I will keep a look out for your post as i am sure that you will get loads of great feedback there too

 

They like to look at sensory issues and i think they test your eye sight. Usually they have a physio involved to assess mobility. Can't really think what other people they involve.

 

The names bring back memories ive definatly worked with Sue Gentle. Its important you try and give consistant information between them all because what tends to happen is the meeting at the end (when everything gets brought together) one person gets one side of the story from differnt perspectives and luckily if i hadnt been at each assessment they wouldn't of been able to connect certain dots together. Its easily done by both yourself and them.

 

I'll have to sign up properly to the sheffield forum. My girlfriend showed the thread to me a few weeks back but ive not really got around to posting on there.

[Laz]

Ok im just responding to the post mumbles made as ive had time to go through it and give some feedback. These points you made were around education and thats one key aspect im going to respond to the needs you identified for support.

 

I need support in:

 

1. Accessing support - this might seem strange, but I'm not a great judge of character and I am often too trusting - I need someone I can trust to meet my support people and judge them and tell me if they are suitable

2. Academic support - tailored specifically to my needs understanding my course not looking generally - so things like support with presentations, participation with other students

3. Training - suitable individually tailored support for people who will come into contact with me so that they understand me better and my reactions

4. Social support - recognising that if I'm happy socially I'm likely to do better in my course - so support perhaps to make friends, join clubs and societies, and support for aspects like accommodation

 

1. This might be something seen as being a 3rd party advocate rather then the guidence/mentor service. Im uncertain on the issues surrounding such an idea but i personally see nothing wrong with it but i could very well imagine criticism being around the guidance not being imparital. I'll have to see what the issues are surrounding this kind of support because i can see in advance there may be issues with it.

 

2. Keeping with it being tailored to the individuals needs not what the support framework has setup. I think thats a fairly sensible suggestion. Clearly when a person with AS starts a course its a good idea to get the curriculum of the course and how it is assessed and the marking criteria involved in measuring a students attainment. Perhaps this would be where another team member could be involved who would be specialised in education legislation, concepts and understanding who would provide a source of information relevant to dealing with education structures.

 

3. Staff support to understand you as a person. I would add a spin onto this that the person with Aspergers in question should also be involved in the trainning themselves in some way so that they have control and input into expressing their needs directly rather then simply the guidance team coming along and telling the staff generalised information arounds aspergers. Perhaps maybe create a document between yourself and the people involved that would clarify each persons role in support and communication.

 

4. If this is going to be hollistic its most certainly an aspect that has to be involved. A good life/work balance is essentially really. Its not only friendship building but your also involved in creating a support network of peers that just can't be artificially manufactured by services so it can only be beneficial to be involved in this aspect of assisting someone to access groups and special interests. Traditionally organisations like the NAS created social networks of asperger people to encourage this but i don't think it neccesarily has to be solely other asperger people to mix with there are all sorts of interest groups especially at a university that would cater to excentric social oddities like you or I.

 

I think a mentor team, rather than an individual is very important. I have just been putting together a list of what I need, and this is at the core. My initial support consisted of one mentor and this simply didn't work - aside from her inadequacies it meant that there was no one available to plug the gaps if she had had some useful qualities. However, I do think it is importnat that that team communicates together and with the AS adult and that the support is regular and reliable. My mentor just added more uncertainty to my life and I really struggled with this.

 

I certainly wouldn't be comfortable operating solo. Theres many benefits of a team both pragmatically like you've pointed out it can fill in gaps for availability and knowledge base. Ive done learning disability nurse trainning so im mostly a healthcare orientated person in my knowledge but i could see the need for someone with councelling skills, someone focused on an area like Education, Employment possible a speach and language therapist in some cases. Social worker?

Communication is certainly vital and also we would be open to scrutiny through auditing which would also allow for suggestions of improvements to the way we structure the organisation.

Another plus side for it being a team is that if one person is involved they are having alot of confidential knowledge of any person coming to the service in their posession. There would be some serious ethical issues raised in how that could be maintained.

 

I think this needs to recognise that an adult will already have develped an inventory of coping skills (that may be more or less appropriate). Support has to begin from the individual rather than being placed on an individual. This is one area my support went so wrong - the mentor thought she knew what I needed and couldn't see beyond her description. It has to be remembered that having got through x amount of years without support, any support needs to be sensitive to the individual who may well feel that support could change who they fundementally are.

 

This is a really superb point you've made here. Being diagnosed as a child i take for granted the speach and language therapy gave me a head start in building those skills (which i was quite lucky to get )

Really what would be looked at with the coping strategies people have in place is if they are "healthy" to the person s well being. I.e. if they are comfort eating to cope with stress. If they have unrecognised anxiety that is impacting on their ability to go out into the community. As you acknowledge you have to approach issues like this senstively and one thing i wouldn't like to see done is basically for an asperger person and some other professionals to come along and be judge and joy over how a person with aspergers conducts themselves and try and mold and shape them into what we feel would be "appropriate" I should stress thats not what i intend to do at all with this.

 

This to me seems vital and a type of support I would like to have (something like a real form of the virtual support I get on this forum). I think such support would normally be termed befriending (or buddying at university). The biggest problem here is capacity. From what I have been able to find out, these services are provided on a volunteer basis - befrienders get expenses but do not get paid. If a funded service were available more capacity could perhaps be put in. But I do think the people need to be chosen carefully. There is for instance an assumption that I would get on best with someone my own age or younger (as I have a lower emotional age). This simply isn't true. Whilst there are exceptions, I generally get on better with people older than myself, often more of a parent figure. If I have to integrate with people my own age I get on better with males than females. Things like this need to be considered rather than again having services imposed. But I do think you are on the right lines here - someone who can understand and guide me about things that I am finding confusing that come more naturally to most people.

 

Befriending may not be the best way the guidance team would work. I think primarily im looking for a way for people to talk in confidence to someone with aspergers as oppossed to a generic service that won't really understand the needs of the person coming into contact with them. I guess really this is a councelling aspect and in some respects if the person your talking to is semi-detached from your personal life it allows for objectivity. Whereas if they were involved in your personal life as "buddy"/befriender i could see that compromising a working relationship. Potentially theres alot of risky legal issues around getting mixed up like that, im trying not to sound cold, metalic and professional but its the nature of the society we live in and the legal aspects should anything ever happen that would involve the law

[Bullet]

It sounds a great idea

[Juney]

Hi

I'm Mum to an 11year old with HFA, I am also a final year social work studies student at Sheffield Hallam. I was very interested to read your research proposals and ideas. The support we received was a leaflet for NAS and that was about it. I am passionate about providing more resources and support network for individuals and families affected by ASD's, particuarly for families and individuals who for whatever reason find it difficult to access any information, resources or help. This is an area that I would like to pursue and gain further knowledge and qualifications in once I have finished my social work training.

 

Juney

[sash]

Hi Laz,

As a Mum who has recieved diagnosis for her son and doesnt know where to turn next, and worries how he will cope in the future, I think your ideas are fantastic...

[allie]

Brilliant idea. Good luck with it.

I'm in exactly the situation you discribed with my son, not sure how to go forward from here.

[Laz]

Hi

I'm Mum to an 11year old with HFA, I am also a final year social work studies student at Sheffield Hallam. I was very interested to read your research proposals and ideas. The support we received was a leaflet for NAS and that was about it. I am passionate about providing more resources and support network for individuals and families affected by ASD's, particuarly for families and individuals who for whatever reason find it difficult to access any information, resources or help. This is an area that I would like to pursue and gain further knowledge and qualifications in once I have finished my social work training.

 

Juney

 

Coincidentally one of my housemates is about to start her post-graduate level of that course.

 

Im hoping to stay in sheffield and do a post-graduate trainning qualification from your university (at the autism centre) to add to my nursing qualification so you may very well encounter me at some point around the city.

 

If this gets off the ground then by all means im sure a social workers input would be very useful, especially one with direct family experiance themselves.

[cmuir]

Hi

 

Think you've got some great ideas. Could I ask a burning question? ... if you did provide this mentoring/guidance service would it be a free service of a private one? Reason that I ask is that whenever costs are involved, there are accessibility issues in that not everyone can afford to pay for a service (even if it is an essential one).

 

Caroline.

[Laz]

If it's up to me personally I wouldn't charge people but someones got to pay for it and im not sure whether it is best to pursue getting a grant (of which there is plenty of money floating about) for such a project or trying to get it integrated into the local NHS trust as part of their community services.

 

Im having to keep an open mind at the moment as im only really trying to get an idea of what is needed (which is why this thread is here) When ive got a strong foundation of evidence from what people are saying they need backed up by some statistical data then the next stage is really to sell it to potential organisations that would put up the money.

 

If everyones tight fisted with cash then i would probably get grant money and pursue it as some kind of non-profit company or charity and do it voluntarily part time and make up for it working in a nurse job. I'd rather do something and then from the experiance of that justify further funding/expansion then simply give up due to the difficulty of getting cash out of government/organisations/european union grant money.

 

But from my personal stand point i'd rather do it voluntarily part time then take money off people in charges.

[Clare63]

Hi Laz .....

I really do need to read all this thread properly, but this sounds a wonderful idea, as you say there is a huge gap after dx for both the individual and parents etc. I know my son would benefit from the kind of support you are considering and I will continue to watch this space for your progress and hopeful implementation as a service the NHS could provide, trouble is this service would have to be provided by people like yourself who have first hand expereince rather than individuals who think they know !

I wish you every success in this venture.

 

Clare x x x

[LizK]

I think it is an excellent idea. My son is very young, five years of age but the support you are referring to is not that easily available to parents of younger child and vistually non-existant to those of older children and adolescents. Paediatrics are really only interested in the physical aspects, CAMHs only interested if you have an associated mental health problem for short term work (as if autism 'goes away'!)and Learning Disabilities which has a wider remit only take you on if you are in a special school with moderate or severe learning difficulties. Education are only interested in what is going on in school and you are left up to the mercy of the school or individual EP as to how well or not that is carried out, Autism Outreach have lost their person who did provide home intervention due to poor funding. You can only get home intervention for behavioural difficulties from the child LD team, can only access a 6 month social skills group for teens if your under CAMHs at that point which means that most parents and children don't have access to either or to any sort of home support or key worker system at all. Incidentally I've heard Luke Beardon talk about autism this year and he was truly inspirational

 

Lx

[Laz]

I appreciate that need exists with parents and younger asperger children, that will have to be something for the future really. One step at a time really i have to get this working and see how it goes

[Laz]

The results of the aspect action day from april last year have been published on the sheffield hallam autism centre website. Its basically research conducted on 256 asperger individuals (including myself) on our needs and what is being done well and not so well and were the gaps are in services.

 

This kind of service slots in very nicely with the recomendations that are suggested by the authors. So now i have some evidence to pursue this with. Im meeting the local support group on wednesday to formally present everything. Have to see how things go, im going through the local trust and contacting the various professionals involved with aspergers to see if i can slot it into existing infrastructure like the local asperger councilling service run by the NHS.

 

Anyway early days yet but if anyone still has an ideas or feedback please get in touch im open to new ways of looking at this

 

thanks for your time and energy

 

http://www.shu.ac.uk/theautismcentre/

 

the report is here if anyone wants to have a read.

Edited September 17, 2007 by Laz