Anna Van Der Post

I can't help thinking that the tolerance and understanding that we wish others to give us seems to be somewhat absent in some of your responses. I agree that the title was sensationalist and causes a knee-jerk reaction against it before one even begins to read the article. I love my son with a passion and more than life itself. I admire him, and am in awe of him and accept him he is. However, I would be failing to face reality if I did not admit that at times I have been close to the edge. It is so important to remember that our children differ markedly and I cannot possibly judge you if you feel that you can no longer cope, we are all so different, our circumstances are different and I call for tolerance, understanding, compassion and love. I don't wish to judge Cathy and John. I am fortunate, for my life would not be better without my son and my son is extremely contented and confident about himself. But for Cathy, John and the Tom at the moment maybe this is how they feel and surely that is valid. It may change, I hope very much it does but they must be allowed to express what they feel, free of guilt in the knowledge that the autistic community support them. Maybe the journalist would have been advised to make it clear that whilst many of us struggle the vast majority still feel that their child is an enormous asset to their family Regarding the genetic screening - I certainly feel that there are genetic advantages to society from autism genes and of course, most of us wouldn't be without our child(ren) given the choice. However, surely it is a matter of personal choice whether someone who already has an autistic child decideds that they would prefer not to have another. I am worried that some desperate parents will read things on this forum and feel even more guilty, wretched and ashamed at the very time that they need nurturing, reassuring, assistance and acceptance.

I have to say that I am not sure about the idea of one form for autism.Ben also has dyspraxia and the difficulties are as much about dyspraxia as the AS bit.Ben did not need any less help two months ago before the AS dx.I am more for appropriate provision based on a timely holistic individual assessment.If autism was selected as a specific category I fear the same situation would occur as happens with attempts to obtain support from children's services child disabilty teams....the limit would be set so that higher functioning individuals would not meet the criteria. Karen. Karen, Fair point - back to the drawing board.. Has any one got any ideas on how we can improve the DLA process? It seems to be so common for parents to have to take time out of work on a regular basis. So many people I have come into contact with have had to give up careers to accommdate their child - it can be frustrating and such a waste of great talent (having said that it can never be a waste if we are supporting our children). There are so many truly amazing parents out there and I shall never fail to me humbled. Lucky Ben to have you! Anna

Karen, The DLA forms stress me so much and I am currently having to fight them regarding my 16 year old son. Like your child mine is extremely intelligent and can appear so intellectually able that it is hard for people to understand the extent of his disability. I find the forms impossible to adapt to my son's particular problems, I find it upsetting to write the things I have to say about him (it feels like a betrayal). I feel that the people dealing with the claims haven't got a clue. If we were not so poor (because of the effects of his aspergers on my availability and ability to work) I would not be fighting (at a time when I have no fight) to get them. I really want to change these forms and get one just for autism - it is ridiculous that people who are already stretched are having to fight for everything - education, a correct medical diagnosis, and financial assistance all things to which they are fully entitled. I so envy people who just pop their child's name on a school list and job done- the child receives the education they need. I am so relieved that others feel the strain as much as I do (sorry but relieved)! Anna

###### - that sounds pretty horrendous. I wish I could say that your expeiences are unique but I have spoken to some 200 parents about their experiences and we are all having to face the allegation that our children's behaviour is 'bad' because we are poor parents. I am trying to get a paper to run a feature on 'Are Parents Always to Blame for Bad Behaviour', programmes like 'supernanny' just reinforce this view. My contenion is that many are not. Many parents report funds being withdrawn and inappropriate educational packages being offered, children then kick off and once again we are blamed. In my book when parents finally managed to get the right type of provision for their child, lo and behold the behavioural problems disappeared! On my website we are in the process of writing a questionnaire (a professional outfit who have been contracted by the government on many occasions) are kindly helping free of charge (we have no money!) from which we plan to find out what is going wrong and what we need to do about it. Please do pay us a visit and fill in the questionnaire once we are properly up and running. If my book (big if) gives us a voice, then I intend to use it! Sorry I can't say much that helps! Anna

All children have difficulty understanding the amount of force that they are exerting, they misjudge - an Aspergers child probably finds this judgement even harder, as they lack the ability to imagine what someone else is feeling. Don't know, but it probably isn't malicious - may just be a genuine inability to understand another's perspective What to do about it - I'll leave that to someone else to ponder on! Anna

I haven't had personal experience of these issues but in my book we have one case of a boy defecating in the house and one case where a teenager with the first flush of hormones kept making inappropriate advances to teachers and students and even said something along the lines of 'come on, my mum has sex with me' - you can imagine the consequences that ensued from that one! If you think it might help, you can read about these from (Link removed by moderator in line with forum rules. Please pm Anna for details of her book.) Unfortunately the paperback is not out until March/April The parents in the book tell you how they handle things which may or may not be relevant to you but it is certainly a comfort to hear of other stories with such complex and diffculy behaviour of which there is generally no precedent to guide one. I hope things resolve and settle soon. Anna

Jo, It is so hard to tell when they are young because lots of tots are slow to learn the ropes. It does sound as though there are some traits but he may not have full-blown Aspergers. If you want to see a range of other people's experiences of their children during the nursery and primary years may i be so bold as to recommend the following book (Link removed by moderator in line with forum rules. Please pm Anna for details of her book.) It is only available as an e-book but the paperback will be out in March/April. It is very helpful to read other stories in order to get a feel of typical early warning signs. My son certainly hated playgroup and had no interest in the other children and as a result I had to home educate him. Hope it resolves soon for you. It is hard to get a diagnosis at this age as no one wants to take you seriously until the problems are so evident or are interfering with others! All you can really do is keep a diary of your concerns with examples to use as evidence in the furture and to help build your case.

So now we are going to Home ed him, i am a bit scared and wondering if i am doing the right thing, but i know a friend (hey clare), who managed it, so i am going to give it a go................. Hi, I have home educated my child right the way through and for us it has been a great experience. Of course you are scared but I found just as I learnt, as we went along, how to look after my son when he was a baby , I responded to and changed according to his development, the same is true in home education. Some children, who have had bad experiences at school take a while to settle down. They often seem to need a recovery period because they have been turned off learning and see it as boring and something you are made to do against your will. Once they have recovered and realise that learning is fun, something they thirst for you can then work with them. Home education is not for everyone but it enabled me to 1. Be responsive to my child's interests, aptitudes, developmental level and MOOD 2. To follow a particular interest through to its natural end (spending days if necessary) and going of at a tangent if something interested him 3. To control sensory isues 4. Offer controlled socialisation where he could build confidence based on successes 5. Give plenty of warning if we need to change an activity (when he was younger I used kitchen timers to give warning) 6. To tailor my approach to my son's preferred style of learning eg. if he didn't want to write stories we went for a walk with a dictaphone and as we walked through woods I started a story and stopped every so often for him to continue and we taped it 7. control stressors and triggers so that we rarely had outbursts In my book (now available www.asteens.co.uk) three families home educated for a period and in all instances it was a positive experience for the child and behavioural problems reduced. My view is give it a go and give it time (it took me ages to let go of a traditional school model of learning and find my own unique approach - you musn't expect instant success of yourself as you will be feeling your way to begin with) Keep us posted how you get on Good luck Anna

In my book all the parents were told that they did not need a statement and as you will see (the book follows six families through from birth to the teens), all the children have had on-going, severe problems. I wish that I had requested and insisted on a statement, it seems to me that without it they block taking action and your options are narrowed. Anna

Hi Lisa, The teens do funny things to the best of us and my son certainly became less sociable during this period. I once asked him if he was lonely and he said I am intellectually lonely (thanks son!) but not emotionally lonely. If he is genuinely content I woudn't worry too much. My son always used to tell me not to project my and societies needs to socialise onto him. I have to say that there are signs now (nearly 16) that on the right occasion and when he is in the right mood he can be quite sociable and charming. I suppose what I am saying is that if your son is happy then I don't think you need to worry too much. I once (in desperation) paid a maths teacher to argue with my son which brought him social contact that he enjoyed (the teacher left after two months because he was out argued!!), maybe you could hire someone who shares his interests. Anna

Peaches, Give me this Head teachers name and details and I will send him a copy of my book when it is out. Just for training purposes of course!!!!! Believe me after reading this he will be grovelling at your feet. I shall not make a penny out of this booker ( (good job that was never my objective) as I have got so many people lined up for a complimentary 'TRAINING' copy. I am seething for you! Anna

Hi Dinks, I would ask the NAS for a list of psychiatrists etc willing to give a private diagnosis. I found the professor who diagnosed my son from their list and he was excellent and so knowledgeable. I would definitely log your concerns in writing. If you are not careful they will under or mis diagnose your child (a common problem according to my research). Good luck Anna

Yes, I have a 15 year old with Aspergers. I had to fight the LEA to accept a private diagnosis but as I had chosen a psychiatrist who had a life times experience in autism and their local paediatrician was not an expert I won. I think is is appaling that we have to accept the state sanctioned (hardly impartial) paediatrician and the diagnosis will only be as good and accurate as the individual who assesses the child. My reason for a private diagnosis was that I felt it gave me some leverage. I don't know what the law is regarding whether they have to accept a private diagnosis or not. It is hard to say in the end whether it helps or not but for me it reassured me that my observations about my child were correct. I'm not being much help really am I? In the end it is trial and error and what worked for me in my area may or may not work for you, so much is dependent on the area you live. Keep me posted - I want to know how it all goes! Anna

We have lived in our current house for five years and we have now reached the level of nodding to one another! A short, cursory business like nod. I am awful at face recognoition which doesn't help so I have probably inadvertently shunned many a neighbour over the years. I am sure that the neighbours think I am mad and an alcoholic. My son cannot abide the taste of tap water (chlorine) so I have to collect his water twice weekly from a private spring nearly two houtrs away (manys the time I have been surrounded by people just staring as I struggle to fill bottles in the pouring rain). When I come back all my neighbours see is a load of wine carriers coming in and out of the house (36 bottles each time!) and because they are so heavy and I am relatively slight I sort of sway as I carry them in! Becasue my son cannot cope with smells we often have the front door open even in the night and in the middle of the winter too. My neighbours have caught me in Asda (on my own) smelling all the washing up liquid - trying to find one my son might tolerate. I have even been seen opening duvets and stroking them and smelling them to try and find one my lad might accept. I am also an insomniac (max 2hrs a night) so I am quite frankly pretty stupid in my own right. So my neighbours think I'm mad and I can't explain things to them because my son understandably does not think it is anyone else's business what we do or why we do it. My son also wears the same (unwashed for years) clothes and even in mid winter will only wear a torn, worn t-shirt and shorts with broken sandles so I am sure they think he suffers from neglect! I have recently decided to stop fighting the mad label and quite enjoy playing up to it now! Anna

Hi Dinks, I am new too. In fact I have never been on forums before and don't know what I'm doing! I would certainly write a list of all the traits that indicate Aspergers that you have seen in your daughter with examples and hand it to the paediatrician. If you do not get a diagnosis of Aspergers but still feel that your duaghter might be, I would visit (if you can afford it) a private psychiatrist/paedatrician who specialises in Asporegers (The NAS used to hold a list and may well still do so). Good luck with it all, it is all such a lot of work and can be quite intimidating. Anna ( edited to fix quote- K )

The community I dream of is NOT just for Asperger people but friends and relatives too. I know that some people (me too) have concerns about communities which on the surface appear to segregate from society - this is not my vision. I suppose that the way I see it is, that people in life tend to mix with people of like mind. Churchy people mix in church circles, environmentalists have been known to have their own communities and home educators band together etc. Aspergers is just another way of being. I believe that for some, a community is a place where what is normally seen as a disability can, in the right environment provide opportunities for personal fulfilment. I am introverted by nature so, on a personal level, I am uncomfortable in large social settings. I tend to work alone and in being separate, mixing only with a few very close friends and family members, my needs are met. I see my Asperger community (very small) being like I suppose, a family of like-minded, exceptional people who support each other. I do not see it as separate from the rest of community. But inreality as I said at the beginning most people segregate according to their beliefs and personalities anyway.

I think that is the nicest things anyone has ever said especially as my son thinks I am the devil incarnate!!!

Julieanne, There are so many people who have been severely let down by family and friends. The ignorance and judgements we all face daily just compounds an already tough life. I had a situation where I was having to do grotty cleaning jobs just to get by and meanwhile home educating my son, not sleeping, and managing some pretty horrendous behaviour and the person I cleaned for (large house, stables, large field, plenty of land etc.) who knew of my problems, told me that she was a bit down because the second pony that they had ordered was going to be a few weeks later than they had hoped - what can you say!! anna

Flora, You are not alone in fear of the future and we are right to have concerns. Most of us spend so much of our children's lives fighting for them and we somehow naively think that when they grow up everything will be normal and it isn't. We all need to plan for our futures and our children's futures. I would love to know what sort of accommodation etc parent's would like for their children. I fancy a small community where we all have our own flats, houses etc but where there are communal areas too eg. a shared vegetable garden, maybe even a cattery or kennels etc to offer employment opportunities. It woud be so nice to live somewhere where oddities are the norm and where I could die safe in the knowledge that my child was safe, happy, accepted and protected. Anyone got a spare million?!! I fully understand how you feel and it is the very fact that we don't know what to do or how to do it that makes us feel like failures. Anna

Lisac, I don't suppose that I should give out the book's details because it may appear as blatant publicity but www.asteens.co.uk will have details when it is out. If you (or anyone else) do buy the book PLEASE let me know whether it reduced your sense of isolation (and for many guilt and inadequacy). When I started out researching for this book I was genuinely so low that I had nearly given up and most people who had children with Aspergers seemed to be upbeat and positive about their children which just intensified my feelings of being alone and useless. The book is also intended to gift to family, friends and professionals who just fail to 'get it', believe me after reading this one they will be shocked! I want as many people to have access to the book as possible so please ask your library to stock it. I have been on a low income for years and I don't want people on a budget to be denied the support that we all deserve. I could rarely afford the books which I needed to read and the library was my saviour. The book is our chance to band together via the website and collectively change the things which are wrong (education is a big one) I cannot tell you how many people have mentioned how insensitive other parents can be. We live a life on a different level to most people and it is not based on normal social values, Aspergers strips away the rubbish, the competitiveness and we are left with the bare bones of existence - we are left with what matters. Anna

Cat, Now suicide, don't get me started!! In the book one mother tells the horrendous story of her poor son who committed suicide(I am still upset by this one). It is becoming very apparent that the psychiatric services DO NOT understand Aspergers and frequrntly offer so-called care which is likely to exacerbate the problem. The care also seems to have a punitive element to it. One of the things (there are so many) we want to do is ensure that psychiatric staff (and the police - inappropriate criminalisation is another problem) have received training in Aspergers. From the parents I spoke to there also seemed to be a high incidence of suicidal thoughts - parents often feel overwhelmed, exhausted, isolated and feel that there is no where of any use to turn. Support is the key but not the judgemental support that is all too frequently offered. If anyone has any thoughts about key areas to research/campaign eg. criminalisation, please let us know on www.asteens.co.uk (we are not properly up and running yet but will be soon). After Christmas I want to start desigining questionnaires so that we can find out what people really need us to change. I can't change everything but promise I will die trying!! Anna

Bid, Like you, the Jacksons made me feel totally inadequate. I always felt that they were self-serving and not being exactly truthful. In my book I and the other contributors have said some horrendous things about what we feel because lying is not helpful to anyone. All I, and the other contributors want to do is to support each other and find out what are the key issues that we need to campaign on in order to make things better. We are all so powerless on our own and frankly too tired to fight but together we can change things and I intend to do so. Your parallel existence brought a smile to my face this is how so many of us feel. Anna

This is eaxctly what I am hearing again and again and it never fails to move me. Parental isolation has not been properly addressed by anyone yet,and you made an important point which no one else has - that we often make friends when our children are young through their friendships, so if our children fail to make friends we become socially excluded too. Being expected to 'grow out of the behaviour' is also common and so many parents (myself included) feel judged, extremely hurt and angry. Anna