Karen A

http://jofrost.com/jo-frost Although supprenany makes some valid points it does concern me that she is offering advice to parents whilst apparently having no qualifications herself.I prefer to follow the advice of professionals who are actually qualified. She is a millionare on the back of her media empire which often involves offering advice to parents on what appear to me to be complex issues .Her web site has the most significant focus on her media activities and she describes her own work as ''reality TV''. In her latest programme her assessments take place in shopping centres and are then filmed for TV. I would rather people are offered a holistic assessment carried out by qualified and experienced professionals myself. Her web site offers plenty of her information about publications.media activities and TV appearances but I see that the techniques section is coming soon. Jo apparently has a natural gift for conecting with children organicaly.Oh that I had that gift.Perhaps I wouldn't have needed help then. There would be no risk of Jo Frost offering informal diagnosis because she is a nanny who is not qualified to diagnose anything. Karen.

Hi. I think in your situation it would be a very poor employer that decided to be difficult especially when you have been signed off sick. I hope you can give yourself some breathing space while you are off. <'> <'> <'> I know it is a bit of a shock when you realise you have signed up to do something new.I have taken on one or two things myself in the last few months and then wondered what mad impulse had taken over. Karen. Karen.

Hi. I do not have AS.I have one son who is 13 and has AS and a son who is 15. Ben was diagnosed with AS a couple of years ago. As parents my husband and myself try our best to support both of our lads but we often don't get the balance right. Sometimes that is because we are stressed about other things. Perhaps your parents have other things going on too. When Ben was first diagnosed we were not sure how to handle it.We had known Ben might have AS for a few years.I had also been on the Forum for a few years and had read loads.However we still did not find it easy to know how to support Ben. Even now Ben complains that I am not always helpful. Ben's brother still does not find it easy having a brother who has AS.He wants to get on with things in his life.Although he is supportive Ben having AS is not a big deal for him because he has always known Ben as Ben. It is very normal for sibblings not to get on well all of the time. Perhaps your brothers and sisters don't know what to say.It might not even be the big deal for them as it is for you. It sounds as though you are better off without your ex if he wants money from you.But it is still difficult. It may take your family time to come to terms with your diagnosis. I have worked very hard but to be completely honest I can't understand completely what it is like for Ben having AS because I don't have AS.Ben has learned more by reading about AS than he has from me. He also really enjoyed litening to speakers who are adults with AS. I would suggest reading some books about AS such as autobiographies. Also read around here or elsewhere. There may be a group for people in your age group who have AS in your area. You could also look at the NAS web site as they have some helpful information for adults who have AS. Have you been offered any support at all since your AS diagnosis ? If you are at college there may be a group for students with AS or a disability or support available there. It is difficult to find appropriate [or any] provision as a young adult with AS but it is worth investigating. There are groups and courses for parents of children with AS who are newly diagnosed. NAS also has a course for sibblings.However almost all of the provision is for those with children diagnosed at age under eighteen.There is very little available for parents or sibblings of people diagnosed as adults Unfortunately once people are beyond the scope of CAMHS provision is very limited. It may be a case of you needing to explore avenues for support outside of your family just because that is all that is available unless you have significant care needs that your family are helping with. Karen.

Hi. I thought I would say hello. I have Ben who is in mainstream secondary in East London and is 13 [going into year 9 in September].Ben has AS and dyspraxia.Our elder son is going into year 11 after the holidays. We are very fortunate that the school has an upper and lower school.This has enabled our elder son to have some space. Ben has had input from travel trainers.However the only route they could come up with involved a bus,tube and walk.This is the central line going towards central London in rush hour which my husband hates. Our elder son gets up at 0630 in order to get on a bus that he can cope because later buses are so crowded. Fortunately I do not work and so can take Ben to school in the car.He can't manage on the bus or tube because he would get too anxious. We are still having good and bad days but Ben does enjoy lots of things about secondary. I am still in the position of feeling that he does very well to cope in a mainstream secondary school and to be coping accademically despite lots of sensory issues.Even now he is exhausted by the time he gets home.If we pushed regarding independent travel I think Ben would not cope with the length of school day. As it is I get up at 0630 in order to get him to school in time and still don't always make it. A predictable routine and TFL do not sit well alongside each other in any case. I thought it might help to know others have negotiated a way through transition in London. <'> <'> Karen.

I found the link I was thinking about yesterday. I decided not to post it as I realise I could just repeat a previous debate however in the words of the Dragons I'm out. Karen.

Sorry. I am not absolutely certain.However I think GPs can now under latest Government changes have an agreement with whoever they wish for the provision of services.They do not have to have an agreement with a medical professional. In any case a diagnosis of AS would in practice lead to any input coming from SS or the voluntary sector. It does not matter whether an individual has an underlying medical condition or diagnosis it is still Social Services who are involved in the assessment of and provision for Social Care Needs. An individual cannot insist on as referal.There are people all over this country who believe that they have a level of need which justifies medical treatment,surgery or assessment.Those people can make a clear case.However it is purely up to the GP to decide whether there is a case for referal and if it is an efficient use of resources.If a GP decides there is no case a patient cannot insist otherwise.Also the GP has to have someone to refer to.In many parts of the country there is currently no provision for assessment and diagnosis of adults with regard to ASD. jungle-jim. Hi. I think an awful lot depends on what support your girlfriends brother wants.If he is 24 and would be regarded by mental health professionals as able to make an informed choice [not mentally incapabable] then it is up to him how he lives his life.He may want to request a diagnostic assessment or talk to his GP about the difficulties he has.However he would have to make that choice. A GP would not usually even discuss the case with relatives if an individual is 24. It is very frustrating for family members who feel there is little they can do to change what appears to them to be a less than ideal situation.However the indivual has the right to decide how to live their life.There are many people who live in houses that are a mess and don't wash as often as they might.Unless they recognise they have a problem and ask for help things have to reach the level where the mess is considered a risk to others before the LA would be interested.Even then the first step would probably be to take action to ensure the house was cleaned up. In my area there is a clear policy to encourage people into work who do not turn up for job interviews regardless of whether they have a diagnosis of anything or not.Benefits are stopped all together if the individual is deemed capable of any work and not to be making adequate effort. I think that is harsh especially when all benefits are stopped but it is the reality unfortunately. Karen.

https://www.education.gov.uk/publications/eOrderingDownload/DFES-0732-2001.pdf The LA have a responsibility to provide a minimal level of educational provision for pupils not in school due to medical needs even if this is 5 hours per week home tuition.However this will only apply if you have documented medical evidence of mental health needs preventing your son going to school. LEAs’ responsibilities towards pupils who are unable to attend school because of their medical needs should ensure that: • Pupils are not at home without access to education for more than 15 working days. • Pupils who have an illness/diagnosis which indicates prolonged or recurring periods of absence from school, whether at home or in hospital, have access to education, so far as possible, from day one. • Pupils receive an education of similar quality to that available in school, including a broad and balanced curriculum. • Pupils educated at home receive a minimum entitlement of 5 hours teaching per week This is a minimum and should be increased where that is necessary to enable a pupil to keep up with their studies. This is particularly important when a pupil is approaching public examinations. Whether the child or young person is able to access this entitlement will depend on medical advice, and perhaps more importantly, when they feel able to cope with it. The right balance must be struck between encouraging pupils to study and recognising when they are not well enough to benefit from teaching. This must be kept under regular review. The LA has to provide something in the interim for pupils not in school due to medical needs until the child is able to return to education or move on to long term alternative placement.If the hospital tuition can't meet your son's needs then the LA would have to find someone who can.There is an obligation to ensure educational provision of some discription is in place even where pupils are very unwell in inpatient intensive input CAHMS units. Karen.

Hi. I should add. A similar lengthy debate took place here last year. I will try and find a link later. But one major issue is being missed that I waffled about last time. Babies are fairly easy to MRI scan because they will sleep for a while once fed and settled. Children of over a year are a different matter.They frequently require sedation and sometimes need a general anaesthetic. Children who might be considered as needing assessment for ASD are even more of a difficult group. A friend has a son who has ASD.He required an MRI scan to exclude other possible medical problems. Two attempts at sedation which just made him agitated and drunk like with ever increasing amounts of sedation. Finally ended up having a general anaesthetic. I don't believe that MRI scans carry any degree of risk.However the reality is that there would need to be a very clear case to justify a GA in order to perform an MRI scan on a young child.It would not be a cheep option. It is not going to happen very often unless perhaps where there is a clear family history of ASD.

...because it is expensive to involve physiotherapists,EPs,OTs,SALT etc etc who would be required to assess what individual needs are as opposed to a blanket diagnosis. ....because if needs were investigated people might have an expectation that programmes be put in place to meet those needs. ........because some professionals still believe that ASD is not a condition that can be treated and so would diagnose but offer no follow up. .....because it would be too expensive to do both an MRI scan and detailed assessment. Karen.

Hi. Parents here often have to battle for months or years to get school to take concerns on board. A referal to an EP can take years if it happens at all. The teacher may be over anxious or perhaps even have some target to meet. However in my opinion the worst that could happen would be that the EP does not recognise any need for further assessments and thinks the teacher has been too keen. An EP would not usually diagnose AS but would refer on to a panel for assessment. Any further referals or advice should involve consultation with you. Ben was not picked up as having any difficulties until he entered year 3. By the time any support was put in place he was hardly coping at school or home. I will find the link for another thread that talks about difficulties parents frequently have in obtaining an assessment or being taken seriously. I posted more on that thread and will not repeat what I said. http://www.asd-forum.org.uk/forum/Index.php?/topic/27007-who-noticed-your-childs-problems/ But as you may gather.Knowing what I know now if I was offered an EP referal in your situation I would say yes before someone cut the budget. If your son does not have AS there may be other conditions,SEN or issues that the EP could advise on. It would be far easier to obtain assessments or educational advice following an EP initial assessment. If your child is on the SEN register at school action and the school have concerns then it is good pracice for them to be requesting further external advice. Karen.

My son happens to be one of those Aspies. I would be the first to admit that many people with ASD do not get the help they need. However people with Asperger's syndrome also have a recognised disability. As a parent of a child with AS who has in the past spent many hours of my time finding information for you it is sad to read such a negative description of my son. This is the Asperger and ASD Forum.I am very thankful that in the past some wonderful people here supported me when Ben did not even have an AS diagnosis. Karen.

Hi. The information that is relevant is in 18 and 20 of the document previously mentioned in that case. However it only states that a review has to take place. The submission from school could simply say that as the child has not been in school there is no relevant information to submit. Similarly professionals could just report that they can't make any recommendations as they have had no contact. There is no obligation placed on the OT or SALT to attend. The school and LA are only obliged to contact professionals that they consider appropriate. .If the LA are expecting him to return to the same school then my guess for what it is worth is that they will do nothing at all short of being able to demonstrate that a review has taken place. Karen.

Hi. Ben went to an excellent nursery and we had very many knowledgable friends.One of my best friends had a son with ASD. Everyone was of the opinion that Ben was a very bright lad with a bit of an attitude problem who had had a lot of adult input.For the first three years of Ben's life we lodged with a single friend.So Ben had three involved adults in his life.Hence the reason for his adult manner and interest in interacting with adults.It was thought he just prefered to interact with adults talking about his many inerests. He had a very difficult year 2 at primary school.However my mum was very ill that year and subsequently died.As I was away from home in that time as well looking after mum we took our eye off the ball. Ben had been in year 3 about two weeks when his teacher explained that he reminded her of her son who had AS. I myself and my many knowledgable friends were rather shocked and puzzled. It took a further three years before Ben was diagnosed with AS. However most people now agree that he is a very bright lad with a bit of an attitude and the vocabulary greater than most adults who has AS.

Hi. The theory relating to AR where a child is not in school can be found in the Appendix to the SEN COP. Statutary Insstrument 2001 No 3455. Annex A. At the back of the paper copy if you have one. 22-(1) This applies where a child is not registered at a school. The LA organises the AR,requests reports and writes to parents.It also organises the AR and writes the report. I am not sure about whether your son is currently classed as registered with a school but authorised absent which would be a different situation. If he is registered with a school the information is in paragraph 20-21. I think the date for AR will depend on whether the Statement is a new second Statement following a re-assessment or an amended Statement. All statements (other than those for children under two) must be reviewed at least annually. The annual review of a pupil’s statement ensures that once a year the parents, the pupil, the LEA, the school63, and all the professionals involved, consider both the progress the pupil has made over the previous 12 months and whether any amendments need to be made to the description of the pupil’s needs or to the special educational provision specified in the statement. It is a way of monitoring and evaluating the continued effectiveness and appropriateness of the statement. LEAs must ensure that such a review is carried out within 12 months of either making the statement or of the previous review. 9:2 When a statement is amended following an annual review, the date of the next annual review should continue to be determined according to the date on which the statement was made or reviewed rather than the date on which it was amended. When a second or subsequent statutory assessment results in a new statement then the review should be within 12 months of the date of the new statement If the Statement is a second Statement issued after a review then the date when the original Statement was issued could be the relevant one. Karen.

Hi. Whilst early detection of ASD could make a difference to long term outcomes for people with ASD I don't think it should ever replace a detailed assessment of what individual needs are.A diagnosis could be just that.It does not gaurentee that any provision is put in place in education or the health system. Karen.

http://www.nice.org.uk/nicemedia/live/11826/52736/52736.pdf Hi. I thought this might be useful.Although it is still at the draft stage it may give you some ideas regarding what assessment should involve. Karen.

Hi. If your son has problems with PE and in large groups and can become aggressive then it may be worth reading around educational issues even if your son is bright. Ben did not have any recognised difficulties in school until he started in year 3.He is very bright and it was thought he was just a bright lad with a bit of an atitude at times. It was a very long and complicated process for us after things deteriorated very rapidly in the later years of primary school.However after much debate Ben was diagnosed with AS about eighteen months ago.Although he is very able in some subjects he has a Statement of SEN and requires significant support in school.This is mainly because secondary school can be a busy and complex social environment with many transitions and different teachers. As it takes so long to build up evidence of a need for support /SEN it may be worth exploring further now. SEN can include all areas of the school day and not just lesson time. Karen.

Hi. Does DS1 have AS ? If so then the braces may be more of an issue than the tooth extraction. Our elder [NT] son who was about 13 at the time had braces.He is a very mature and generally manages things very well.He found braces very irritating and difficult to put up with. Knowing Ben and being more aware than usual having just had to administer a course of antibiotic cream to a spot on his ear I don't think I would consider braces unless they were absolutely needed. The orthodontist required an agreement be signed stating parents would support the regime needed whilst braces were in place.I do not think my I could agree to it with Ben. Karen.

Hi. I dropped in myself and have stayed around more than I planned. I was wondering if you were around and then noticed this while looking for something else this morning. Good to see you. <'> <'> <'> Karen.

Hi. I am just wondering what qualifications your psychotherapist has. As a rule unless a psychotherapist also has qualifications such as being a doctor or psychiatrist then the training does not include diagnosis.So the psychotherapist may from experience suggest you might have AS but I doubt whether she would be able to give you official confirmation. This may not be an issue for you if you are wishing to understand yourself better or find that therapy works for the things you want to work on.But I thought it worth mentioning in case you may need official confirmation in the future. Karen.

Hi. I think it is worth bearing mind that as another poster said it is a risk to use the DLA towards a long term committment such as housing.Ben was awarded DLA but although I was not told it was for about two years.So I have just completed a new application and will need to see whether it is renewed.Very few people are awarded DLA for longer terms automatically now. Also the current government may review DLA again. Do appeal if you are turned down though.We had to ask for a review once we had an AS diagnosis and more evidence to support the application and were then awarded DLA. Karen.

Hi. Who did the original assessment ? Was it an individual paedetrician or were they part of a multi-disciplinary panel ? Are they the designated professional within your area identified by the PCT as speciailst in assessments of ASD ? Current good practice guidance specifically states that ASD assessment should be undertaken by a muti-disciplinary panel with specialist experience and traing in ASD. If this did not happen then it may well be worth requesting a GP referal to the team in your area. Even if it did happen it is still possible to request a second opinion. There are teams who will conduct assessments where a diagnosis is borderline however they would require a referal from CAMHS or another professional.For example the team at Great Ormand Street will consider referals in this situation. Have you been offered any other help or support ? Even if the paediatrician was not happy to diagnose ASD they should be able to offer advice and referal to other professionals . If your son has difficulties in school then input should be provided on the basis of SEN and should not require a diagnosis. CAMHS should be able to offer some input if there are identified difficulties also without a specific diagnosis. My son Ben was only diagnosed with AS about eighteen months ago.He is thirteen now.He actually had far more input from CAMHS before his diagnosis with AS than since. The latest NICE guidance is still out to consultation.It will not be in its final form until the Autumn.However the draft document may be useful. http://www.nice.org.uk/nicemedia/live/11826/52736/52736.pdf Karen.

Hi. Whilst it may well be the case that cuts could have an impact on provision I think it is worth bearing in mind that this is a news article within a magazine.The magazine is written with a specific readership in mind.The publishers will have their own agenda.There is nothing wrong with this but it does not amount to any solid research evidence.It could be scaremongering by those with their own political or other agenda. Karen.

Hi. Some people with ASD have in the past been described as hearing voices which professionals would describe as auditory hallucinations.However it was fequently later found that this was because the professional did not understand what the person was describing.So a person may describe their thinking as a voice in the head but this is not the same as actually hearing voices. Professionals in the field of ASD would usually say that this was a miss diagnosis because of a lack of understanding of ASD. There is solid research evidence of a larger proportion of people with AS experiencing depression than would be expected within the normal population.However this could well be due to the difficulties faced by people with AS in areas such as finding work. However there is as far as I am aware no scientific evidence of any link between what would be called major mental illness [bi-polar disorder and psychosis or schizophrenia.] which are the main forms of mental illness for which hallucinations are recognised symptoms and ASD. It is possible for a person with ASD to also have Bi-polar or schizophrenia however this would be a coincidence. I think this is important because early diagnosis and treatment for anything unusual like hallucinations can make a huge difference to how well a person copes so anything new like that should be taken very seriously and not just thought of as part of AS. Also a person with AS who described their experience ''as hearing voices '' who had had a diagnosis of ASD since childhood would always have described it that way.Children are not diagnosed with bi-polar or schizophrenia.However if an adult with AS described a new and different experience of ''hearing voices'' then this would be worth investigating through a referal to CAMHS or an adult mental health team. Karen.

Hi london11 . I live in East London and have a son who is 13.He has AS. Do NAS have any groups in your area or if your daughter is in school do the school run any activities or groups that might interest her ? Ben does not go to any organised groups.However he has made a few friends since starting secondary school.He plays electric guitar and this and other things have helped him to get to know people based on shared interests. In our area there is also a number of summer activities for teenagers which are topic based. Karen.