Karen A

It is possible to learn more by reading around. We had three years whilst CAMHS debated about whether Ben had AS.I spent that time reading and here on the Forum.I am told by some professionals that I know more about AS than they do. I was even a moderator here briefly.There is almost no provision for adults with AS who are mentally well in most areas.Therefore even with a diagnosis it is likely that you would need to do the same reading. There are a few counsellors within relate who have some awareness of AS and work with couples.However again if your partner and yourself wish to improve communication or understanding of each other it may well be a case of reading around. I do not have AS and have never had a diagnosis of anything although it has been recognised that at one point I had anxiety,depression and probably PTSD.I have done a lot of work on the issues but have reached a sense of peace and a greater understanding of myself without a diagnosis.I had psychotherapy. CBT is known to be effective for people with AS however there is very little provision which is specifically tailored to the needs of people with AS.In any case unless an individual is able to self-fund counselling it is unlikely that a PCT or elsewhere would fund it if there is not clear evidence of moderate depression or anxiety. It is my understanding that the DDA only offers protection in employment related to difficulties that an individual can clearly demonstrate are related to the specific impact of a disability.It is also only required that an employer makes reasonable adjustments. So it would only be relevant if you feel that because of possible AS you have difficulties in work and you feel your employer is discriminating against you in relation to those difficulties. I am sorry if I sound negative.I am not saying whether you should or should not push for an AS diagnosis.However I would be less than honest if I did not try to give what I believe is a fairly limited list of the benefits of diagnosis. We spent three years in psychotherapy every week as did Ben before his AS diagnosis.It was a painful and difficult experience.Ben wanted to know whether he had AS and does not regret deciding to go ahead with assessments.However he has been bullied specifically because of his diagnosis.I still have not returned to work because a large amount of time stil goes on pushing for reasonable adjustments to be made. There are adults who speak on AS who consider themselves to have AS who have never had a formal diagnosis. Karen.

Luke Beardon came to speak at a conference that my husband and myself went to a month ago. He was very outspoken on this issue. He believes that to say we all have a bit of ASD is like saying a dog has a bit of cat because both have four legs and a tail.

http://www.ace-ed.org.uk/advice-about-education-for-parents/Special_Educational_Needs/understanding-annual-reviews http://www.autism.org.uk/living-with-autism/education/primary-and-secondary-school/extra-help-for-your-child-in-school/extra-help-in-school-england-and-wales/annual-review-england-wales.aspx These links might be useful.See especially the download. Karen.

http://www.asd-forum.org.uk/forum/index.php?/topic/25552-can-you-give-me-your-experiences-of-transition-review-into-primary-school/ Hi. I think Kathryn may have answered your question the other day on another thread. See post 13. Karen.

Hi Hortus. To look at the debate from a different perspective.I wonder what you hope to gain from diagnosis and whether this is something that diagnosis would enable you to have access to ? Karen.

I thought I would say.It is not true that the GP must comply with a patient request for anything.A GP makes an assessment of the patients symptoms.A clinical decision is then made regarding whether referral is needed.The GP also decides whether referral would in his/her opinion be a good use of resources.In order to refer a GP would also need to establish that a condition requires treatment and that treatment is available. .Finally he/she has to have a professional to refer to. A GP may well argue that a person with AS who is not mentally unwell or limited by possible AS does not require referral because there is nothing to treat. A GP would not refer me for investigations into whether I have a broken arm today just because I happen to have pain in it and think it could be broken.ASD is no different. I have payed for psychotherapy for the last ten years and their is no doubt that at one time I needed it.There would have been no point expecting my GP to comply with a demand to fund it because it is not available within the NHS. It is a daily occurence in the media that people feel the NHS should fund provision because they feel strongly about it from a personal perspective.The NHS is not a bottomless bank that can provide everything on the basis that individuals demand it. Karen.

I do not think you can lose a diagnosis of AS once you have it. It is my understanding that Ben might decide he does not wish to identify himself as having AS at some point if he feels that having AS does not have a significant impact on his ability to function in daily life.However that would not remove his original AS diagnosis. Karen.

I think the difficulty is that there is minimal provision in most areas of the country for people with ''mild'' depression or anxiety whether or not the individual has AS.A GP might presrcibe medication.In some areas there is some low cost charity provision.Otherwise it is almost impossible to obtain talking therapy. Karen.

It could be a pervasive developmental disorder or perhaps a neuro-developmental disorder which might or might not cause a learning disability . Ben has AS but he certainly does not have a learning disbility in the common understanding of the term.He is extremely intelligent.

I thought it was.However I very open to debate as I am not the expert on this.

Do you have a cotract from when you started work ? Karen.

I had one interesting thought that might be completely irrelevant. AS is a learning disability whereas Schizoid Personality Disorder is a Mental Disorder. The learning disability team may have a financial motivation in diagnosing you with a condition that they have no responsibility for. I wish I could say that the idea is so far fetched as to be ridiculous....but it would not surprise me.

It is psychiatrists talk for a guess. Who gave you the original AS diagnosis and do you have documentation ? The history taken as part of AS assessment for diagnosis should have excluded a history that could indicate attachment disorder.I think Schizoid Personality Disorder is probably the adult development of untreated severe attachment issues.For a child to be diagnosed with attachment disorder a clear history is needed of bereavement,trauma,neglect ot traumatic loss.Most children with attachment disorder have been within the care system.Ben was an unusual exception. Karen.

http://www.rcpsych.ac.uk/mentalhealthinfoforall/problems/personalitydisorders/pd.aspx This link might be useful. Although the choice is yours in your position I would challenge a formal diagnosis of Schizoid Personality Disorder rather than accepting it formally. The treatments that are available for Schizoid Personality Disorder are known to not be effective in ASD.It may be worth asking what the professional is offering in the way of treatment.It may not be worth having what is widely recognized as an extremely stigmatizing label for what is often considered to be an untreatable disorder unless the professional has some cure that I am unaware of. Excuse my scepticism.Ben spent three years in weekly psychanalytical psychotherapy.He did gain a lot from the experience however he still has AS.

Hi again. I am not currently registered as an NHS professional because my RGN registration has lapsed.I have no specific training in mental health. However the diagnosis of Schizoid Personality disorder cannot be based on anything other than an extremely detailed history of very early childhood experiences and parenting.So I am at a loss as to how she could provide a diagnosis of Schizoid Personality Disorder without it. I have a son Ben who is 12 and has AS.Ben was diagnosed after a three year debate amongst many NHS psychiatrists and psychotherapists.It was thought for a long time that he might have attachment disorder.I had been mentally unwell in the first three years of Ben's life which was recognised.However the history was explored in great detail during debates about whether Ben had AS or attachment disorder.The significant issue was that Ben had experienced early childhood trauma because of my mental state.Without that history he would have been diagnosed as having AS three years earlier.

Hi. Schizoid personality disorder is certainly not a natural progression of an AS diagnosis.Although it might be possible to have scizoid personality disorder and AS it would be extremely unusual. Schizoid personality disorder and adjustement disorder are both considered by most professionals to be serious forms of mental illness.Some people feel that a personality disorder label is more stigmatising than helpful. Have the professionals explained any rationale behind their suggestions. . Do the professionals have any experience and training in ASD.There have been reports of people having been diagnosed as having a personality disorder because the person providing the diagnosis did not know anything about AS.However this is usually where a person had never been diagnosed with AS as a child and for some reason came to the attention of mental health services as an adult. http://www.minddisorders.com/Py-Z/Schizoid-personality-disorder.html This might be useful.It appears to suggest that it should not be possible to have a diagnosis of Schzoid Personality disorder and AS because a professional would have to make a decision as to whether the behaviour displayed is due to AS or due to a specific style of parenting. The type of therapy recommended for Scizoid Personality Disorder is unlikely to be effective in AS.For example family therapy or group therapy which does not take account of any difficulties being related to AS. Karen. Karen.

There have been a few threads about books about AS for both children and their siblings. I will search out some links for you. http://www.asd-forum.org.uk/forum/Index.php?/topic/25111-good-book-for-explaining-autism-to-8-yr-old/page__p__294492__hl__books__fromsearch__1#entry294492 This thread might be useful and there are other liks on it too .

The NAS offer a help 2 course on sibling issues.I have not done it but the other 'help 2' courses I have donw were excellent.It might be worth finding out if there is one in your area.There are also some good books about AS for siblings. We have Ben who is 12 and J who is nearly 15.They have always been at the same school. At primary school the school were rather too keen to use J in supporting his brother.J is very supportive but he was effectively being used as a TA. He already has to cope with extra stresses at home.Ben can be very loud and tends to try to take over the x box and TV at times.He also says things to Js friends that are a bit embarrassing which is difficult when J is trying to appear to be a cool 15 year old.J really needs his own space. So since the lads started at secondary school we have made it clear that at school they have their own lives.I drive Ben to school although J could take Ben on the bus because I do not want J to have to have the responsibility.Fortunately the school is split site which also helps.Many of the teachers have been surprised to find the lads are brothers. It might be worth investigating whether your daughter might be avoiding her brother at lunch time because of subtle pressure from other individuals.Whilst it is helpful for your daughter to be supportive, if your son is being laughed at rather than others laughing with him then that is an issue that school should pick up.It would be unfair to expect a 7 year old to take responsibilty for educating the other pupils in the school about her brother's disability.She could well end up being marginalised along with him. Karen.

School had a consultation day last Friday.As staff were doing consultations students were not in school except for a ten minute-half hour consultation.I think turning up for these in uniform counted as school attendance. Similarly students are sent home at 1355 at the end of each term......1350 being afternoon registration.

<'> <'> I hate busy traffic too it is very stressful. I hope you are able to get an interview with the paper application. Karen.

Hypermobility is where joints are more mobile than would usually expected.Some children with dyspraxia have it. Ben has hypermobility in his finger joints and finds it difficult to maintain a comfortable pencil grip. http://www.cks.nhs.uk/patient_information_leaflet/joint_hypermobility# Karen.

Thankyou all for the advice. Ben also learned from attendance club that a target of 85per cent is needed for attendance to be monitored less closely. He learned that some pupils take time off because they do not like things at school.He came across others at attendance club who are at school even less than him. We have always expected 100 percent attendance in our house for people who are not ill or do not have another authorised reason for not being in school. It took Ben until 1530 yesterday to use all of the information learned at attendance club and demonstrate his maths is not bad either.He suggested that he would prefer not to be in school on Thursday and could still reach the 85per cent target.

Hi Gail66 and Welcome to the Forum. Karen.

Hi Stuart and Welcome to the Forum. I have Ben who is 12 and has AS. Karen.

Karen.