Karen A

Hi. I can't pass a lot of comment.I know very little about the original poster,the relationship and any number of complex factors that could all lead to a situation where verbal abuse was exchanged.I am not defending the use of the word retard in any conversation. I would never use the term.However I will be the first to raise my hands in the air and admit that I have said things that are probably worse during heated exchanges in the course of over twenty years in a relationship.I am not proud of that fact but fortunately my husband would accept that what is said in the heat of the momment does not equal my not accepting who he is unconditionaly. I think it is very risky to try to figure out whether one person wants to fundamentally change another on the basis of one word used in the heat of the momment.We have no idea of the context. Also the other individual here may just be finding it difficult. Ben would find the idea that I don't love him and accept him unconditionaly outrageous.However we have been on this path for years. If when I first met my husband he had told me that he had been diagnosed with Autism [which he certainly isn't] I think I might have found it difficult to come to terms with at first. I would not have called him a retard but I hope he would not have been making decisions as to whether to spend the rest of his life with me on the basis of how I reacted . Both of my lads who are thirteen and fifteen tell me retard is used as part of usual teenage exchanges.Although neither of them would use the term they do have friends who probably would.It appears that the term may be used as an alternative way of describing an individual who is being stupid.It may not be as loaded a term for them as it is for me in my forties. One of my lads happens to have AS the other one doesn't.Incidently they are both very bright. I would not be pleased if either of them were called retard.However I would not take it as a fixed opinion about Ben just because he happens to have AS. Karen.

Hi. My brother was another David. Although your David's situation was different in many ways to my David and my David was a long time ago it still brings back memories. People were a bit funny then too. I think people just don't know how to react even when they do their best. I will be thinking of you all. <'> <'> <'> <'> Karen.

You just keep preaching Mumble I will listen to a sermon from you anytime. <'> <'> <'> <'>

Hi. I don't know. I don't know what typical is. All I know is it is not me. But then professionals told me they would never figure me out. <'> Karen.

Hi. As you may not know me very well. Up until about eighteen months ago and having made thousands of posts I was neither of these whilst professionals debated about Ben's dx amongst themselves. I have been round long enough to be able to estimate that the most common reason for coming to the Forum is in looking for information as either a worried parent or confused undiagnosed adult. Another reason is where a partner of a person with AS is motivated enough and aware enough to come here and try to understand more about AS in order to help with difficulties they may be having. Another group of people are those who happen to have a professional interest in AS or knowledge that they use to support others.Although the majority of these people are also parents of people with AS there is no rule that says this has to be the case. I have been very fortunate to come across some excellent people in the last few years who have contributed vast amounts to the field of ASD I could not care and would not dream of asking whether they have ASD,are parents of people with ASD or whatever. If any organisation had a policy of including only those with specific features and excluded others some people would consider that discriminatory. It would appear that the Forum does not live up to your expectations however last time I looked at the criteria for membership the rules were very clear. Karen.

I don't come here very often at the minute but have posted enough in the last few years. I am and will be ever grateful that in all of my time here I have never had to worry about whether I am an ''insider'' or ''outsider''. Karen.

Hi. I feel very sad having read this.I have Ben who is 13 now and has AS.I know he has many of the difficulties you mention.However he has made huge progress in how he copes with relationships.I hope that if he wishes he may one day find someone with whom he can have a great relationship based on mutual acceptance and equality.I would not want him to end up with someone who feels the need to look after him neither would I expect him to believe that a partner should just accept that he can't manage relationships in any way other than what has been learned by rote learning. Perhaps I have too higher expectations but then he has spent many years showing me that he can do things some people would say a person with ASD should not be able to do. Karen.

If I lived near enough I would love to come and practice social situations over a coffee with you. I am in desperate need of practice too. Near enough pushing fifty to qualify probably. <'> <'> <'> <'> Karen.

I popped in today and have not been around for a while. However I thought I would give another perspective. My son who is 13 and has AS is very bright indeed.He is at a large mainstream comprehensive in London.He copes on an almost daily basis with difficult behaviour by other pupils and the impact it has on him. If we could find a local ''Specialist Provision'' that could meet his needs he might well be interested.He also feels fed up at times.Although the environment is well able to provide for his educational ability this only works if he can get into lessons and learn. Furthermore it is a very common situation. If I were you and Specialist Provision to the cost of £135,0000 was funded by the LA and I was doing well I would not complain too loudly.My LA would be only too happy in the current financial climate to amend the Statement at the earliest oppurtunity to name a mainstream school and use the money elsewhere or not at all. . Karen.

<'> <'> That is tough and must be very frustrating. Karen.

<'> <'> I will be thinking of you and hope you have a good day. Karen.

<'> <'> <'> <'> I just popped in and read your very sad news. I wanted you to know my thoughts are with you. Karen.

Hi. Sorry I have not been around and just picked up on your awful situation. <'> <'> Please do as Kathryn and others have suggested and try to work with SS if you can. Once it is on record that a parent has a history of mental health problems it may well influence the opinions of those who read reports because that is what they look for.Even if a child has a diagnosis of ASD some professionals might argue that that makes them more vulnerable to the impact of parental mental health problems. However well you are now it is still on record that you have been unwell and your son is very challenging which impacts both of you. This is not intended to be critical.I learned from experience that even after years of support from CAMHS and Ben having a clear ASD diagnosis some professionals still never accepted it because I had happened to be unwell in the first three years of his life. The court psychiatrist is likely to be extremely experienced in the field.Unfortunately their reports are probably likely to carry more weight than any professional you could fund.In my very limited opinion a diagnosis of conduct disorder will at least be taken seriously with a requirement for specialist input. Karen.

Hi. Most CAMHS inpatient psychiatric units offer a very specialist service with experienced staff.The days of young people being admitted to hospital to stay for years without any thought are thankfully over.If Matt does have a major mental illness such as schizophrenia or bi-polar disorder then early diagnosis and appropriate treatment could make a huge difference to how well he manages his life and educational oppurtunities.There are many people who live with mental illness and have careers and coninue with life. Young Minds is an excellent charity in the field of mental health and young people.They have a help line that might be useful.I will see if I find the link. http://www.youngminds.org.uk/ Karen.

<'> <'> Thinking of you over the next couple of weeks. Karen.

Late to this but wanted to let you know you are all in my thoughts. <'> <'> <'> Karen.

Hi. I thought I would offer some encouragement that it is possible to find a way forward.Ben has AS and dyspraxia.He had problems with PE starting in primary school.Things got so bad that he was anxious from the previous evening.However in the last term things have improved.The PE subject that brought about the change was the climbing wall.A TA spent time working out a group that Ben would be able to manage with and the instuctors are excellent.Ben had also done it before outside of school and felt positive about it.Having had a good experience of climbing he has just gone on to do badminton.He was positive enough to be happy to go with dad to a sports hall at the weekends to play badminton.Last year I would never have thought that would happen. Karen.

I have no idea at all what went before and do not want to get into fighting any corner.I just made a passing comment.Having been here for three years and just returned from a break [should have read ''have been taking a break''] because it all got too much I am sorry but I have no wish to get into comment on another site. In any case I am sorry to have also gone way way off topic. Sorry Cmuir if you are still following. As for the details on design etc unfortunately I would be absolutely no help at all as Ben is the expert in such matters. Karen.

Sorry I did not intend to presume to comment on what encouragement you offer the NAS and did not explain myself well. I commented on what I observed on the web site.I looked at length at the website and saw lots of information offered by one person.I tend myself when offering advice to refer people to the NAS because I believe their information is excellent .If I myself am looking for information I always check the credentials of the person offering advice because that is how I was trained.But it is a personal opinion and it is for anyone to decide for themselves I guess. I do not intend to get into any more debate.You may not be aware but I have taken a break from the Forum.Having clocked up 5000 posts doing similar work to Debbie and having been involoved in other stuff elsewhere I am working hard to gain some balance in my life.I am being very careful to prioritise what debates I wish to continue.

All I can say is I will not be encouraging Ben to describe himself as a ''Jellybean'' [he would feel very patronised] or using the site myself on a regular basis.Everything appears to be written by one person and there is a marked lack of encouragemnt to use some of the excellent resources offered by recognised organisations such as the NAS which worries me.

As far as I understand diagnosis without the requirement for provision is currently a contradiction in terms. The diagnostic criteria for AS specify that for a diagnosis to be given the condition must have a significant impact on the individuals ability to function.If an individual does not need any provision then they would not obtain a diagnosis. As the NHS is currently in the financial state it is in there will not be any will to diagnose people who would not require any provision as there would be no point.The medical profession which does the diagnosing basis its whole ethos on diagnosis of illness.If a person does not have a condition needing treatment,investigations or input then the medical profession would not be interested.It is possible to follow many avenues on the basis of exploration,self-acceptance etc etc and I am a strong advocate of things like therapy for those who wish to use it.However most people would not expect the NHS or LA to fund it. I have a son Ben who is 12 and has AS.Ben is currently doing very well at a mainstream school with support.He may at some stage decide that he copes perfectly well and does not wish to describe himself as having AS which would be his choice.Obtaining an AS diagnosis has been extremely valuable in helping Ben know who he is.However we would never have expected the NHS to fund expensive and detailed assessments had Ben not at one time required intensive support. We as a family now need relatively little support compared with many on the Forum.However we are in this position because we were very fortunate indeed to be given weekly support for an hour every week plus Ben weekly support for an hour a week for three years only because it was thought Ben did not have AS.If Ben had been diagnosed with AS three years ago we would have been fortunate to obtain any support at all. I apologise if I sound less than supportive.I have spent an awful lot of time reading posts in the last three years from people in desperate situations who cannot obtain support that most people would consider appropriate.If diagnosis without the requirement for provision could be introduced it would then lead to diagnosis without provision even for those most in need. Perhaps I have become cynical. Karen. I thought I would add one foot note.There are those who may be interested in offering diagnosis because there will be those who would use the opportunity for financial gain.As I commented in a previous post this could be more of an issue if the current NHS bill is passed.However the people who might hope to gain from the opportunity to offer diagnostic services for AS might be only too pleased at there being no requirement to follow up or offer provision which would most impact those most in need.

If there was a simple genetic link then it would have been found by now. I think that the answer is far more complex.Perhaps there may be some genetic factors but still impacted by some other factor and with Social and economic factors in the mix somewhere. In any case I have my own theory which might be rubbish.I think that where children are identified as having ASD other family members will go on to develop ways of adapting which could easily make others think they have some degree of ASD.If this is the case where mothers are the main carers it may well be mothers who demonstrate this. I know we have adapted over the last few years in terms of planning so that we are much less spontaneous than we used to be.Even though we work very hard to ensure that our elder [NT] son has all the oppurtunities available our family is still different to how it might have been if Ben did not have AS.I think this is a common issue where a family member has a disability.I think it has far more to do with family development than genetics. I think the answers do not lie in observation where it is already established that a child is on the spectrum because observation is not a scientific method that can be seperated from expectations. Karen.

Specialist multi-disciplinary teams do already exist.They may well not exist for much longer and could be replaced by a much less effective system.If the Health and Social Care Bill 2011 is passed then groups of GP'S would purchase services for their patients effectively from whoever they wished to.This could be a charity,a private providor or anyone else able to offer the service at an appropriate price.The theory is that patients will be given more control.Some might argue that this could make casual diagnosis more likely. http://www.parliament.uk/business/news/2011/january/health-and-social-care-bill-second-reading-/ http://services.parliament.uk/bills/2010-11/healthandsocialcare.html

Hi. We have certainly found that time out of class may become counter productive.I became aware of the issue when I overheard Ben describing to a friend how he had not taken his coat off.One teacher had previously sent Ben out of class for keeping his coat on.He did not much fancy group work which he does find a challenge so just ensured his coat remained firmly on his back with the desired result. On occasions teachers send Ben out of class and then have to escalate sanctions because he would rather remain outside than come back in. I appreciate that sanctions are needed and that it is not fair on other pupils if disruption is not dealt with.However in my opinion a sanction is not effective if it encourages the behaviour that is an issue. We have found that some things are better ignored than challenged.For instance Ben takes pens to bits and fiddles with the pieces.This if anything is a way of helping him to focus.It does not inconvenience anyone but us who are forever buying pens.If challenged he would not concentrate and would become frustrated.I think the same thing could be said for chewing pens and it may be better for TAs to pick the issues that are a real problem .If TAs spend lots of time telling your son not to do things like chew pens he may not feel this is help he needs. One last thought.How is the class teacher doing generally ? We have found that often when a teacher is not firm or consistent this impacts discipline and organisation across the whole class.This then has a disproportionate impact on Ben because he becomes anxious and hence challenging in response to the atmosphere in the class. We notice this more now because Ben is in year 8 with multiple teachers.There could be a wholeschool issue which is impacting your child. Ben also becomes anxious and hence challenging in response to a general level of stress in the classroom.Could it be that the teacher is stressed out about SATS,pupils are stressed about SATS and your child is picking up on the atmosphere.He may not feel the need to comly and work for SATS if they do not feel relevant to him. If your son has TA support and there is some flexability within the Statement it should not require a change of Stement for your son to have some time out of class during preparation for SATS if doing that would help. Karen.

Hi. Just one thought.I have no idea what the holiday timetable is like for the two schools for April.However I am currently looking at a timetable for Ben that wil be a challenge to say the least.I think five days in school in the whole of April a couple at the start and three at the end of the month with not one full weekin the whole of the month. Well if Royals will decide to get married . Anyway it may be worth pushing for longer than May before making any decision if your timetable is similar. Karen.