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Hi, We are in a similar situation. My son is now 16 and was awarded DLA only two months prior to his 16th birthday (I had never claimed before). I applied for PIP an my son had recently had an interview from the Independent Assessment Service. We are currently awaiting the result.

Hello Noogsy, Thank you for your encouragement. You are completely right about the small steps. We have a CIN (Child in Need) meeting on Wednesday and formerly, I would have gone into the with a list of questions to ask the various agencies represented there. However, as you have found, I think there is little they can or will do. I have approached a voluntary organisation and arranged a provisional meeting between my eldest son and a 'buddy' who could mentor him. My eldest seems to be positive about the meeting, but things can change over the course of the week, I have also requested assessment for an Education Health and Care plan for my youngest (if he will participate). However, knowing that you have gone through something similar and your sons have come out so well is a huge ray of hope for me.

Hello, It is a little time since I have posted here. This is mainly because we have gone through a bit of a family crisis. However, I will try to keep this post short and to the point. Basically, both my sons are experiencing extreme anxiety. My youngest is 14.5 and has not attended school for over a year. He receives 5 hours of home tuition each week at my house (he resides with my husband) but frequently, the first half hour of each session is taken up with me trying to coax him out of the bathroom because he locks himself away when the home tutor comes. He has an extreme health anxiety as well, so if the tutor clears her throat he will run from the room and, again, require coaxing to return. My youngest also, has no friends and will participate in no activities apart from visits to my brother's farm. My eldest is 16.5 and also receives no education or training. His anxiety is more extreme and involves serious panic attacks in which he shakes and screams (and is physically sick) and he experiences auditory and visual hallucinations when he is distressed. Both boys are under CAMHS and my eldest takes a considerable amount of medication for his symptoms. Until recently the boys were subject to Child Protection Plans due to emotional abuse from their father (who is on the autism spectrum). Their father (my husband) has mental ill health as well and sees a psychologist on a weekly basis. (His autism was not the cause of his behaviour). Please can someone tell me how I can encourage the boys to participate in something outside the home? I fear for them as their anxiety grows and they become more depressed and 'dysfunctional' through complete social isolation. I also fear for their future. My eldest has an Education Health and Care plan but the local authority are reluctant to review it until he can meet unfamiliar people without panicking. Furthermore, when I separated from my husband (due to the child protection issues) I gave up my main job and increased the distance teaching that I do. However, the boys' continuing problems with anxiety may mean that I will not even be able to work from home. I am becoming pretty desperate. My eldest has a diagnosis of Asperger syndrome and professionals have suggested that my youngest fits the criteria for PDA, but he has refused formal assessments.

Hello, My son is just coming out of a phase where he hid from anyone outside the family and ceased to engage with any purposeful activity. We were going through a very stressful time and his behaviour was definitely linked to he poor mental health.Now, at least he goes out with his outreach worker and he visits a shop once a day. However, the reclusive and isolating behaviour is not only debilitating for my osn, but it has , at times, rendered me housebound.

Hello, I apologise for not writing from personal experience. However, my eldest son has AS and mental health problems. We have been going through a terribly stressful time which involves a lot of change. The stress has intensified his ritualistic behaviour and accelerated his mental health difficulties to the point where he has been hallucinating and hearing voices. The agencies that we have worked with grossly underestimated the affect stress has on people with AS.

Please ignore this message. My kitten pounced on the keyboard and sent it before it was ready.

Hello, I have not posted here for a while due to family circumstances. However, i would appreciate a little advice. My eldest son is 16. His mainstream school placement broke down at the beginning of Year 10 when his mental health deteriorated (he has Asperger's syndrome and developed mixed anxiety and depression). He was an inpatient in a CAMHS unit for several months and his old school said they could no longer meet his needs (they had been struggling a little for some time). He acquired a place at a Special School which specialised in students with autism, but there was a significant delay to his starting date and his mental health deteriorated again to the point where he spent most of his time crying when he got to school. Ny son said that he wanted to apply to a mainstream college. He was interviewed for a Level One Horticulture course, but after interview and consultation with the LA, the college said they could not meet his needs. He went for a look around a specialised college which has been very

Hello, My son (16) disclosed information which has led to a Child Protection investigation through which both my children have been put on a Child Protection Plan. My son and I have left the family home and lodge with my sister and her family. The CP issues are complex and relate largely to behaviour between my son and his brother (14) which resulted in sexual bullying by the younger boy. Since we left home my eldest son has told me that he wants to attend a mainstream college rather than try for a specialised residential placement, which was what was originally planned. I respect his wishes and he has an interview for a course in September. He chose a course that is practical rather than academic and at a basic level so he would have less mental pressure when he started and he could concentrate on adapting to college, working on his Maths and English and making friends. However, he is incredibly anxious. He has several panic attacks each day and manages them with a variety of strategies e.g. writing down his thoughts, taking himself to a quiet place, listening to music, breathing exercises and so on. He is also expressing feelings of guilt because he thinks he has broken up the family and should have 'manned up' to his brother. I have told him that he did the right thing through making the disclosure because if the behaviour had continued his mental heath would have broken and his brother would have ended up with a criminal record. My youngest son also has mental health difficulties and I support him as much as I can. He lives with my husband and we are sorting out regular contact. However, my eldest seems to have so much to cope with and so much uncertainty and I just really frightened that the college placement will break down and cause him even more distress. Has anyone any advice about how to help him cope with the stress caused by this situation?

This is a very interesting thread. My son experienced visual and aural sensations including seeing flashing lights, hearing voices and even feeling like the room was closing in on him. He was diagnosed with Todd's syndrome or Alice in Wonderland syndrome which is a form of migraine with quite strong sensory aura. Later, when his anxiety increased he reported hearing voices again and the psychiatrist said these were related to anxiety rather than psychosis. We found the medical professionals very helpful.

Hello, I have just returned from a meeting in which it became apparent that my son's placement at his special school has broken down and it is not likely that he will be returning there after summer. The Head of school stated that their provision could not meet my son's mental health needs and that, although it is likely that the LA will implore us to give the placement more time, any extension of the provision will simply add to my son's sense of failure and deny him the possibility of finding somewhere more suitable. The Head also reported that due to risk factors, my son could not access the residential provision that we have been asking for since his discharge from hospital in October. Although disappointed, we tend to agree with the Head and the senior consultant psychiatrist also seems willing to write a report stating exactly what my son needs in a provision to help our son's case. The report will go to the Local Authority. So, we are almost at the end of the academic year; we have no idea where my son will go after summer and we face a long summer break time where there will be uncertainty and lack of activity. I want to start looking for an alternative placement straight away, but I do not know where to start. We need something that is residential or at least provides weekly boarding facilities, caters for post 16 students and can support mental health difficulties that are complicated by ASC. My son is quite bright and has no directly challenging behaviour, but his mood is often extremely low. Has anyone any suggestions where we could start looking? We would prefer the Yorkshire area, but not exclusively so.

Hi Special Talent, I apologise for my error in the previous post. The figures for the various categories of LD are indeed lower than I stated. However, I will expand on the issue a little. Irrespective of IQ, in my experience, many people with AS struggle with life skills (in various ways) and really need support to live independently. I realise that i am making sweeping generalisations here and there will be many people with AS who have no such problems. However, because access to services and support is often dependent upon 'quantifiable' criteria such as IQ etc. it may be difficult for those people who have significant need of support, but who do not meet the criteria for access to obtain it. I would say that the literature that I have read suggests there is not a direct correlation between AS and learning disability (learning difficulties may be a different matter) but as Livelife has indicated above, there are other factors which may prove a barrier to learning for people with AS and related 'conditions' resulting in significant underachievement

Hello, It has been quite a difficult year for my family and in particular for my two sons (14 and 16). In February my son was accepted on the roll at a school which specialises in meeting the needs of young people with ASC/ADHD. However, it seems like the placement has broken down and there is an emergency meeting on Tuesday to discuss next steps. Meanwhile, my youngest son has been refusing school since January and is diagnosed with Generalised Anxiety Disorder. My husband, who is the boys' main carer, finds the situation incredibly difficult to deal with (he also has AS) and there are multiple agencies involved with our family. My commute to work (2.5 -4 hours each way) extends the time I am away from home to 13 or 14 hours a day and leaves me drained in the evening. So, I am considering moving the family much closer to where I work. There is an excellent specialist college in the area where, if the authorities permit, my son could attend as a day student or lodge as a weekly boarder. Being closer to work would mean I could try to home school my youngest and perhaps introduce him to a vocational course in the college where I work next year. Yet, I feel so sad when I think about this. It almost feels like everything has failed and I keep worrying that I will simply move the problem from one area to another because there is no guarantee that my plan will succeed. Another problem is that my job is not secure and I had imagined that if any change was to take place it would be that I would find a job closer to our current location. In fact, I am full of doubt and worry and I suppose i am just looking for a bit of advice or support so that I do not go to the meeting next week unable to present a coherent case. Thanks J .

Hello, Several students who I teach cannot access support for independent or supported living because they do not meet the criteria required for support from the Learning Disabilities team. To access help from the Learning Disabilities team, clients used to be assessed by the team and they were not funded for support unless their IQ was 70 or less (MLD). Now I believe the IQ requirement is much lower, possibly 50 or less (SLD). The students had IQs of average or above average range, but their coping skills and social awareness made them far too vulnerable to live independently. I may have the exact figures wrong, but in general terms, many of the students with AS had average or above average IQs.

Hello, It has been a little time since I wrote on this forum. Basically, the situation at home has become quite complicated and I would really appreciate some guidance about the best way to respond. My eldest son (nearly 16) has AS and developed some mental health difficulties last year which resulted in a 7 month inpatient admission to a CAMHS unit. He was discharged in October and offered a place at a special school as a day pupil, with a view to transitioning to residential placement over time. However, the integration to school has been slow and complicated by my son's continuing mental health difficulties and now, after a series of incidents of self harm, readmission to the CAMHS unit seems likely. Meanwhile, my younger son (nearly 14) has been refusing school and is diagnosed with Generalised Anxiety Disorder. He has been referred to a PRU, but refuses to attend that, so home tuition (provided by the LA) looks like the next step. Work (and commuting) commitments take me away from home up to 14 hours a day so my husband looks after the boys. My husband has AS himself and finds it hard to cope with the children's increasingly challenging behaviour. Children's Social Care are involved with our family and my husband receives some support from a Family Intervention Team worker. My problem is that I simply don't know what to do. A huge part of me wants to take extended leave from work, jump into the situation with a very hands on approach and see if my presence and support can make a difference. Yet I wonder how effective this would be. We have so much intervention; the boys' issues are primarily mental health matters and jeopardising our only source of income may only add to the pressure we are under as a family. I would really appreciate any advice, particularly from people who may have experienced something similar to this.

Hi, My husband undertook the ADOS assessment three years ago. He was 52 and he had similar issues. His mother (who was 80) could not really remember what he was like as a child and I was not as helpful as I should have been (due to problems in the relationship). The doctors, however, understood the complexities surrounding adult assessment, and my husband received his diagnosis. I am really glad that he did, because it has provided me with a framework within which to understand my husband's issues and it has helped me to find ways of modifying my own behaviour. So please don't worry, observations from parents and partners are only part of the assessment.

Hi, Thank you for your replies. I think I will write to the consultant, just to put my mind at ease. I was just not aware that structural abnormalities of the brain had become almost a diagnostic feature of autism. I may well be imagining the staff reactions. An explanation from the doctor may make me feel more secure.

Apologies for any typos and spelling errors. I am typing on the train.

Hi, My son has been experiencing some 'absences' and trembling. We were pretty convinced that these were caused by anxiety, but to make sure, we requested a scan and an MRI. The results of both the tests showed no abnormalities and we were quite relieved. However, recently my son attended a paediatrician's appointment with a mental health worker from the CAMHS unit where he is staying as an inpatient. The doctor discussed the MRI scan at the appointment and said that images from my son's MRI showed he had no structural abnormalities that are commonly associated with autism. The MH worker related this information and although I am pleased that my son's brain is 'normal', I am a little concerned that the observation has cast a little doubt about my son's diagnosis amongst staff at his CAMHS unit. There is nothing specific but I detect a slight shift in attitude and a certain lack of tolerance towards my son when I visit. I had assumed that findings from studies in brain physiology were interesting, but not definitive and that autism (in all its variants) was diagnosed largely through behavioural and developmental phenomena. The research that I have read focused on small samples and/or post-mortem data and although there are exciting leads, no singular causative agent has been identified for autism. I may, of course, be wrong and medical science could have discovered an anatomically 'typically autistic' brain; however surely such a breakthrough would be headline news! So, why did the doctor make such a remark and why have staff interpreted this as implying my son has been misdiagnosed? I would appreciate any information that could help me to develop a rational argument to counter, what I consider to be, an ill timed and slightly inaccurate observation made by my son's doctor. Thansk

Hi, Thank you for the link Sally. In one sense, my son is fortunate to be in a setting where additional needs, such as OCD may be more easily recognised and even diagnosed. I would normally be reluctant to ask for an assessment for another condition, however, in this case, such diagnosis may help other people (including ourselves) interpret his behaviour more accurately and reassure them that he will not act on these thoughts.

Hi, Thank you again for the replies. Sally, you are absolutely right about what we consider to be the most beneficial placement for our son. That would be a place at a school that specialises in meeting the needs of young people who are on the autism spectrum as a weekly boarder. This would give my son the structure that he craves and it could help him develop social and interaction skills that he finds difficult to develop at home. One of the psychologists from my son's unit is going to contact the Head of the special school to see if there is any possibility that he would consider my son as a potential pupil if evidence could be provided that the expression of his thoughts was under control, as Cathcart states, he needs strategies that can ensure he can manages his verbal behaviour. I think there are traits of OCD in my son's profile: he has become obsessive about cleanliness and his hands are red because he uses so much hand sanitiser.

Hello, Thank you again for the helpful replies. My son is 15 years old. The dark thoughts that he has can sound pretty disturbing: they express his anxiety that he may commit violent and even sexual offences. Professional opinion at the CAMHS unit is that the thoughts are a manifestation of anxiety and there is no real risk that he will act on them. However, my son will talk about the thoughts to anyone who he trusts. The Social Care referral came as a shock to us. My son has run out of the house a few time and he has run away from the unit after visiting home. However, he has also run away from the unit 10 times when he has not had a visit home; once he ran into town and was escorted back to the unit at 1 a.m. by a drunk man! Far from not wanting to come home, my son has expressed a wish to return home as soon as possible. However, he has only managed to sleep over once since he was admitted to the unit in April. I am willing to work with Social Care and the CAMHS Unit to gradually build up the time my son spends at home, however, I am worried that the insecurity about his school may lead to further anxiety. I am totally opposed to the idea of fostering because the problems do not lie at home, although I acknowledge that we need support to keep things stable for my son. The representative from the council who attended the meeting yesterday told us that the Section 17 Core Assessment will take about 30 days to complete. Then the council will need additional time to consider reports from the CAMHS unit and to consider other placements. I have no faith that anything 'bespoke' will be adequate. The next meeting was scheduled for late September, so it is possible that my son will have no full time education until October. We have had two initial assessments from Social Care before. Both cases concerned parental ability to cope (my husband has AS and mental health problems and I am away from home for extended periods during the day) . Both cases were closed and we have worked with the CAMHS team to develop strategies we can use to help my son at home. The prospect of fostering has never been discussed before. I will contact the FRG. I have read the discussion boards there and they offer good advice.

Hi, I have posted on this forum several times with respect to this topic,so forgive me if some of the content sounds to familiar. My son has Asperger's syndrome and at the end of last year his mental health began to deteriorate rapidly, he could not cope with school and he was admitted into a local CAMHS unit in April with anxiety, depression and what seemed, at the time, to be a thought disorder. To cut a long story short, my son's mental health has improved and I attended a Care Planning Meeting two weeks ago fully expecting discharge to be discussed. However, I was shocked when the mental health social worker who is attached to the CAMHS unit informed me that he had made a referral to Social Care for a core assessment and another member of the team present said that temporary fostering may be the recommended option from the assessment. I was very angry that such a referral had been made without parental consultation and I voiced my complaints to the local authority. However, my son had refused to come home a few times and he had run away form the unit after visits home, so I could almost understand why concerns may have been raised. I also knew that I needed support from the unit an authorities to help my son move to a more specialised educational provision. So I agreed to the assessment. It should take about 30 days to complete. Today my husband and I attended an emergency Interim SEN review at my son's school. The meeting was supportive to a great extent. The school stated that they could not meet my son's needs, the Consultant Psychiatrist from the CAMHS unit said he would support our application for a more specialised provision. However, the Head from the special school we visited, who had seen my son on the unit said he was very concerned about my son's dark thoughts and the fact that he mentioned them so openly. He added that there were very vulnerable pupils at the target school and they would not be able to cope if my son talked to them about such matters. Again, I was a little taken aback because the school specialises in provision for boys with AS and I felt that the Head must surely have come across boys who said totally inappropriate things at interviews. However, I accepted that what my son had almost certainly talked about some graphic and possibly sexual content and the Head had to consider safeguarding. The Consultant Psychiatrist did confirm that my son's dark thoughts were being managed more appropriately on the unit now and he now has a set of rules pertaining to who he mentions the thought to and so on. The representative from the Local Authority noted that school had said they could not meet my son's needs and there was no alternative provider named so she said she would go back to the council and look at what was available. Provision in a PRU was mentioned, but there was a resounding cry against this and a 'bespoke package' of perhaps a tutor teaching my son in a learning centre of other establishment was considered as a temporary measure until something more concrete was available. I have just completed a sweep of specialist provision for boys with AS in our local area and the situation is quite grim.; two providers are closing down and the others specialise in placements for pupils with severe emotional and behavioural difficulties or or with severe or moderate learning disabilities. Whilst I have no doubt they are excellent places, they would not meet my son's needs and he would not really fit in. The school that we had visited seems ideal and my son had written a statement expressing how he would like to go there (the fact that the Head had visited him on the unit seemed to reinforce his assumption that the school was a real option). So, now we face the imminent prospect of a core social services assessment with an unknown outcome; my son has no secure educational placement for the next academic year; there is a danger of my son becoming institutionalised and I feel like the wheels of the system are taking over. I am convinced that a placement in the target school as a weekly boarder would really change my son's life and if Social Care have any concerns about parental ability to cope, the semi residential placement would buy us more time to jump through the necessary hoops without any question of fostering. I would love to hear from anyone who has had experience of navigating through the above systems. I am a bit lost at the moment.

Hi, Thank you for your advice. My son is 15 (just). Since my last posting, he has been admitted as an inpatient to the local CAMHS unit where he has settled quite well. The episode seems to be treated more as a mixture of autistic obsession, depression and anxiety than psychosis, although the boundaries between the two are, as mentioned above, unclear. For example, my son mentioned hearing voices, but the psychiatrist told me that because the voices came from within his own head and he was not distracted by them in conversation, they seemed to be part of his own internal dialogue rather than hallucination. My mother and brother have a few issues with keeping things clean and tidy and this is something my son has been focusing on. It is still early days, but my son does seem a lot calmer now.

Hi Frances, I do not know if my reply can help, but I am in a very similar relationship (although, I am probably considerably older than you). I have been married for fifteen years. Like you, I am a professional in a person-centred career and I have no friends outside work (i.e. only colleagues). When we were first married, I struggled to come to terms with what I perceived as my husband's 'irrational' behaviour. For example, he couldn't stand the noisiness of our children so he shouted at them to shut up; Having upset all the local political groups, he formed his own political party of which he was the only member and then became enraged when nobody else joined. He offered to clear my late father's woodland of bracken by inventing a flame-throwing device that burnt down the neighbouring farmer's fence. He always forgot my birthday and he always told the children exactly what I have bought them for Christmas. Then, when my eldest son was diagnosed with Asperger's syndrome we realised that my husband was probably also on the spectrum. He received an official diagnosis three years ago. This helped me enormously because it gave me a framework with which to interpret my hsband's behaviour. I realise that the descriptions above are not typical AS traits, but you may find, as I have, that your partners' strengths completely compensate for any 'faults'. For example, in my case, my husband is the most honest and loyal man that I know. Now the boys are older they dote on him. He has an extensive knowledge of cars and engines and he is teaching both boys how to drive. My eldest son especially finds it an enormous help to have a father who really does understand. His anger is never long lived and usually it stems from sensory issues or some misunderstanding. I feel extremely protective towards him because he is so clearly vulnerable. I also admire his sense of individuality. Sometimes I wish we would go out socially. However, he would never stop me from going off on my own. So, I suppose what I am trying to say is that you love your partner and that it obvious throughout your message. It is almost certainly the case that he does not realise his constant correction and interrogation are ineffective communication strategies (and very annoying). I am no expert on these matters, but sometimes I opt for the easy way out and pretend to agree with what DH says just to keep the peace. The insensitivity is something I can empathise with. Try explaining how such comments make you feel. Perhaps he really does not know he is being offensive. Some of the more practical issues can be solved easily: buy another duvet and give him more instructions for housework. As I said before, I am no expert at all but I can assure you, you are not alone. I

Hi, I can remember experiencing similar feelings when I was a young child. It was almost as if I was overwhelmed by the feelings that I experienced for something so sweet and vulnerable. Try talking to him, as Trekster suggests and see if you can unpick the feelings a little. The fact that your son has asked you about the feelings suggests that he is uncomfortable with them.