Anna Van Der Post on 'Children and Teenagers with Aspergers'

Anna Van Der Post has edited a brilliant book, that shows a different side to coping with children and teenagers on the Autistic Spectrum - especially Asperger's, and I wanted to know her thoughts, about why she felt it necessary to publish such a book - and could it help other parents and children.

Anna also wrote the article A Cautious Celebration of the Autism Act 2009.

Vicky: Why did you write 'Children and Teenagers with Aspergers'?

Anna: I wrote it because I needed it. I had been struggling to cope with my own son and feeling very isolated and impotent. I couldn't find any help that was relevant or appropriate for my son and when I turned to books I actually came away feeling even more ineffectual, wretched and alone. It seemed to me that most of the aspergers literature was either dealing with those less severely effected than my son or they were showing the air-brushed, somewhat sanitised version. I couldn't believe that I was the only parent feeling this way so I posted various letters on autism societies' websites in England, Canada, USA and Australia and also in Good Housekeeping magazine. I had expected a handful of responses but was inundated with more than 200 responses in the end. At this point I knew there were many people who needed the book as much as I did and I just had to do it, whatever it took.

Vicky: How did you choose the people in the book?

Anna: With difficulty! The quality and quantity of the material I received was such that I could have filled ten books. I found it very hard to turn people away, especially as I knew that many needed to tell their story. In the end I chose the families who best represented everyone. I was also swayed by the fact that they had kept real time diaries which I felt would help to validate the accuracy of their recollections and might also be used to enliven the text with quotes. The families I chose were very astute observers of their children and had a deep understanding of why they behaved and reacted as they did. Part of my decision was, I have to admit, intuitive, I just knew they were right. The final decider for me was that I needed parents who were capable of being honest, and who were willing, where necessary, to say the unsayable. This was intensely painful for some of the parents as they had never confronted what they really felt or revisited the difficult times.

Vicky: How did you feel reading their stories?

Anna: I read around 200 stories during the research stage of the book and some were so painful that I literally sat at my computer and howled. On occasion, (including Liz's story in the book) I took several days to recover and was unable to stop dwelling on their ordeals. However, at other times I was shouting 'yes' as they recounted experiences and feelings I recognized or made astute observations. Many times I laughed at their wit and humorous turn of phrase. But always I was blown away by their love, their ability to laugh and their unending courage.

Vicky: What was the contributors brief?

Anna: To tell their story as mothers and fathers but without the usual censoring. They were asked to be totally honest and realistic even if that put them in a bad light. I asked them to open the door to their house and invite readers into their home and to make sure they got it, that they truly understood it. This was surprisingly difficult for some of the contributors and meant that on occasion I had to send work back saying I don't know what you feel and I don't feel I know you. We are all expected socially to put on acts so that many of us don't know how to be honest anymore.

Vicky: How did you feel once you had written the book?

Anna: Just relieved initially because we nearly missed the deadline. Two of the contributors were unusually busy but also paralyzed and just couldn't get down to it. I was in a difficult position because how do you pressure someone who is already over-burdened. I also couldn't afford to pay anyone and was unable to work much during the process so I couldn't even offer a financial incentive. At the end, I felt incredibly close to everyone and that we had all worked so well together for a shared belief that this book was needed and would help. I knew the project would not make money and in many ways this intensified the sense of communal achievement of a job well done. A true labour of love.

Vicky: Who did you write it for?

Anna: Firstly myself, but also for others like me. Parents in crisis, parents feeling alone and those with rock-bottom self-esteem. Parents who are exhausted having spent years battling with everyone, including very often their own child. As time went on, I realised that most of the difficulties the families were having were caused by inappropriate educational environments and provision. When it was wrong, the poor child was so stressed and distressed that they kicked off at school and then again at home. However, when the provision fitted the child, Aspergers ceased to disable them and their family. I wanted professionals to gain a visceral understanding of aspergers and how it effects the whole family. I wanted them to see how we have to fight an often faceless, and sometimes deceitful, system for years on end and the price we pay. Finally I wanted them to see how much damage they can do when they get it wrong but more importantly how lives are transformed when they get it right and how kindnesses and a job well done are remembered by us forever.

Vicky: What kind of response have you had so far?

Anna: We have had some wonderful and heart warming feedback. The feedback from parents can broadly be divided into three camps. The vast majority comes from touchingly appreciative parents who are at their wits end and feeling alienated. They had so often thought they were the only ones to have had such tough times and to have such negative feelings about the child they really do love so much. We also get feedback from parents who have never confronted their true feelings and have been afraid to revisit the difficult times. These parents often report feeling depressed or even angry for a few days and then realise that the book actually helped them to process and organise their thoughts, feelings and experiences. The final group of parents have either young children or those who are less severely affected and they come away feeling that they are lucky to have only mildly affected children but at least if things ever get tough, they will be prepared. They all mention that they often revisit the book and each time get something else from it, even trying some of our strategies. We also hear from professionals and the most common comments are that it made compelling, if uncomfortable, reading and they thought that they had understood Aspergers but soon realised that they actually hadn't.

Vicky: Your book tells it as it is and confronts the fact that dealing with Autism is hard. Why did you write it in this fashion?

Anna: Because I believe that I can only ever deal with problems in life by realistically and honestly facing a problem head on. Only then can I stand back and evaluate what needs to be done to change things, or find ways of coping with them if they cannot be changed. I had felt unsupported and let down by much of the other Asperger literature which tends to focus on happy outcomes and simple strategies which were really more suited to the milder cases. I also wanted to ensure that professionals were forced to understand Aspergers and the effect it has on the entire family unit. Most of the literature they are exposed to is clinical in nature or supremely positive and I felt that it is only by being graphic will it be understood. In much the same way as when it is reported that 100,000 people in Africa are starving, it is easy to tut, tut and carry on with life. However if we focus on just one family and get to know them and see the children crying with hunger, we suddenly find ourselves moved and compelled to take some action to help. It is easier for us all to identify with a person whose story is moving, and then linking that story to the larger subject at hand. We have hopefully connected to the reader emotionally but have also provided the intellectual substance needed to really understand an issue. I hope that they can recall their response to our book and apply that care and concern when dealing with other families just like ours.

Vicky: Have things improved for the people in your book?

Anna: Yes, for some, the effects of teenage hormones seem to be less pronounced, they feel their young men and women are settling down. Several of the families have been fortunate in securing funding for continuing education so can relax for a few more years.

Vicky: You've set up a website called www.asteens.co.uk - who is it for?

Anna: Parents and professionals. Its main purpose is to share information, to support and to research. We have worked with 'Viewpoint', a professional outfit to produce two in-depth questionnaires on the educational/health provision for children and teenagers with Aspergers . We intend to analyse the results and release a report which we will disseminate to government and other interested parties. It will give us all an accurate snap shot of current provision.

Vicky: How have you decided what information to post?

Anna: We try to provide a range of articles from different sources. Not everyone has easy access or the time to trawl through current scientific research on Aspergers and depression/anxiety, so we try to list and twitter some of them. There is a growing body of evidence linking mental health and nutrition which does not always get reported in the general media and I have followed this field since my university days back in the 80s. We also write the odd article to encourage a debate.

Rachel and I have both wasted a lot of money over the years on books about Aspergers and related issues and also in trying to accommodate our children's sensory needs and this prompted us to do product and book reviews. I hope in the future to write an article on the Disability Trust and what they have to offer our children and how they are funded.

Vicky: What do you think of the Autism Act 2009?

Anna: It is hard to know how it will pan out. On the face of it, it seems like a very positive step forward but ultimately care is only as good as the individuals who provide it and we need flexible, creative and properly financed solutions.

Vicky: Will you write another book to follow all the children as they grow into young adults?

Anna: If there is sufficient interest this was always something we wanted to do. We felt it would give a much fairer picture of Aspergers as we ended the book at the most difficult time for all parents and so our negative feelings about the future may, with any luck, prove unduly pessimistic.

Vicky: Where to for you now that you have written the book?

Anna: I want to continue working closely with Rachel - my colleague - on the website and the questionnaires because it is through this snap shot of services that we can try to engender some change, particularly in the approach to education.