Anna Van Der Post

I am particularly interested in whether most parents of children with Aspergers feel isolated. Until recently I felt very isolated because, firstly I am a single-parent so I have to work (part-time) and look after my son. This means that I am constantly exhausted and do not have time or energy to socialise. I also feel isolated at social events. If we go anywhere I have to prepare my son, prepare the host and then spend the whole occasion anxiously watching my son. Finally, when people talk to me their lives bear absoultely no resemblance to my life, their problems seem so trivial (I wish I had their problems) and because autism is my life, I have nothing else of interest to talk about. If people ask me about my life and I tell, they usually make an excuse to escape or worse still tell me what I am doing wrong! Due to my isolation, I tried to find books etc that echoed my experience but all I could find were stories of success which bore no resemblance to my situation. As I am a research psychologist by training I decided to find out if others felt like me. I placed various adverts and over 200 families responded. Isolation was a recurring theme, as was problems with finding an approipriate education and feelings of being judged. I would be interested to hear from anyone else who has felt alone (even when surrounded by family and friends) because their lives are so different from the norm. I have now nearly completed the a book which consists of six families honest accounts of what it is really like to raise a child with extremely challenging behaviour and complex needs and what they really think of their children (many of us have some quite complex and uncomfortable emotions). Does this ring a bell with you?

Kathryn, Thanks for that I shall have a good read later! Anna

I absolutely agree that the forms are also inappropriate for mental health problems and you raise a very important point about how one's needs may change from day to day. I am collecting all these points so that when I am in a position to campaign I will know the pertinent issues. I agree that you have to twist the question to fit your circumstances. My contention is that few people can manage these forms without help so surely they need re-designing.

Thanks Kathyrn, I shall try Beyond Adolecence. Unfortunately we really do need the DLA because my son's obsessions are all consuming and extremely expensive. My son is not willing to have any information about him in the state's domain which means he will not accept any benefits but cannot seem to accept that as he cannot work and I can only work part-time (single-parent) that we need them. It is a nightmare as I cannot manage without them. I think what has really angered me is that people who are a lot less disabled than my son are getting it without any trouble. They seem to pick on a few randomn people to hound (that's what it feels like anyway) Thanks, anna

How daft it is that the DLA believe any 16 year old (let alone one with Aspergers can manage their money sensibly) Once I start my campaigning for change this will be one area I shall raise. In answer to your question, if you manage to have the money paid to you I think that you are expected to use it on them but not give it to them. However, you will need someone (i.e. a teacher) to back up your claim that your child is not competent to manage the money. Your child is expected to fill in the form or for you to help, they are expected to sign it. I think it is extremely difficult to have to say the things you need to about your child if they are able to read it.

Oh how I sympathise. My son has had the same torn shorts on (day and night) for months. He used to wear Matalan tracksuit type trousers but I don't know if they go up to age 11, we also used to get stuff from Boden Mini which he could tolerate. Good luck. Anna

Have any other mums had trouble with the DLA. My son is soon to be 16 and up until now I have claimed DLA on his behalf without any trouble. Now he is nearing 16, he is supposed to apply for himself, which he refuses to do so I applied on his behalf. I have just had my claim rejected because my son will not meet them or sanction my applying for the benefit. I feel that the forms are totally irrelevant to Aspergers and are not fit for purpose. The form which a GP is supposed to fill in is likewise irrelevant. The practise of asking GPs to fill in the forms is ridiculous because in my case my son has not visited his GP for over three years and even if he had, they would just think he was a highly intelligent and charming young man. They would not know that he becomes aggressive regularly, they would not know that he has been wearing the same clothes day and night for months on end, they would not know that he cannot tolerate smells, noise etc. etc. I am now having to appeal (my GP admitted that he made a mistake and has now fully supported our claim) and I cannot believe how much effort it has taken. I have had to collect more evidence (witness statements) and basically tell them the same information again. It has taken three graduates to do this and I believe that the CAB have to train their helpers to cope with these forms! I have found the whole thing unbelievably stressful. They make the appeal process as demanding as possible. Even the form you need in order to appeal has to be collected from the job centre (why don't they send it with the rejection). I am just completing the final stages of a book on aspergers and I plan to research from my website just how many other people have had problems and then to campaign for the forms etc to be changed. Do other people feel as I do? Any tips for the appeal? Thanks Anna