Very Informative Interview with UK Resident on Autism, Gluten, Books and More – Vicky Warren Speaks Openly

1. Tell me about you and your background and how you are involved in the area of gluten-free, autism etc.

I used to be a nurse and midwife before David and I got married in 1969 – we then went on to have 5 daughters between 1972 and 82! I first became aware of having difficulties in digesting wheat within 24 hours of giving birth to Naomi my oldest daughter in 1972, and with each successive child birth the problem got worse, eventually leading to my doctor sending me to hospital for allergy tests, which proved nothing!! It wasn’t until my 4^th daughter was born in 1978 that I finally got round to doing an exclusion diet and guess what my symptoms disappeared! Since then I have been wheat free and since 1998 I have been totally gluten free. Unfortunately since going down with *ME/CFS (Alternate names/abbreviations for chronic fatigue syndrome) 2002 I have had to deal with a lot of food allergies and exclusion is always the best way to deal with it, but I have discovered that quite a lot of these allergies/intolerances are transient which is quite interesting so my diet goes up and down as to what I can and can’t eat – but gluten is always a complete no no.

When Naomi my oldest daughter was diagnosed with being on the Autistic Spectrum at the age of 28 in 2000 she was completely addicted to all wheat products! At her new autism specific residential home they even in 2000 knew that gluten could effect the severity of the autism and so Naomi was put on a gluten reduction diet which she keeps to even now 10 years on. Her health has vastly improved with her carers being brilliantly observant to her dietary needs and how it effects her autism.

2. Tell me a bit about being a professional interviewer – what does it entail?

Am I a professional interviewer? That is a moot point because many times I have been told that as an amateur and a voluntary worker that my interviews are quite often better than the professionals and in the fact that I get a lot more information from my interviewees by being more conversational. But I have to act as professional as I can even though I am the amateur!

3. I’m intrigued by the fact that you created programs for hospital radios, please explain what this entails.

Here in Britain we have had hospital radio run by volunteers for many decades. I became involved with my local hospital radio in 1985 and because I was much older than the other people there I decided to carve myself out a niche of doing interviews with celebrities and book authors! In 1986 I was doing so many, that myself and another hospital radio volunteer started up a charity called H.O.P.E. – Hospital Oriented Programme Enterprises and made programmes for hospitals around Britain. I also roped in students from a local university and both my husband David and I taught them how to do old style cut and splice tape editing and good quality interviews. It was a great deal of fun and even my kids got in on the act!!

4. What does BFK stand for?  Can you share some details about this, please?

BFK stands for Book Fiends Kingdom – people who love to read books, but because people kept getting it confused with Friends instead of Fiends I shortened the title to BFK – and it grew until now we have www.bfkbooks.com, www.bfkautism.com, www.bfkmusic.com and www.bfkdvd.com the BFK family of websites to cater for most tastes.

5. Please provide details you’d like to share about YOUR mission for these sites.

My original website www.bfkbooks.com came into being in 2007 to Raise Awareness and Funds for the Care of Adults with Autism because Naomi read voraciously before she became Special Needs, the website was set up in honour of her reading and her many interests. I would like all the websites to grow and raise funds to help adults with autism. At the moment we are helping the Disabilities Trust’s Adult Autism Specific Services but the more money we can raise the more people we can help.

6. What particular circumstance inspired you to create your sites?

Naomi being diagnosed in 2000 at the age of 28 with being on the Autistic Spectrum. Once she was settled in a good Autism Specific Residential Home run by the Disabilities Trust in 2000 it gave our family a chance to heal emotionally and physically. In 2006 I felt I was healed enough to begin to give back to the people who had cared so much for Naomi so she become my inspiration for setting up all the websites.

7. If you could share 1 key piece of advice with parents that are raising an autistic child, what would it be?

Raising an autistic child is one of the hardest things to do because you have to forget self and become like a Rottweiler to fight for the right kind of care for your child. My advice for all the parents in this position is to take time out for themselves, even if it’s to just stand in the garden and listen to the birds singing. Parents are so tired with all the battling they do that they quite often become ill so taking time out is a necessity. Here’s an article written by Anna Van De Post on Coping Anna is a mum here in England who’s autistic son is now 17 and who has gone through a lot of trials and tribulations in trying to cope – I asked her to share her experiences in this article.

8. Any particular touching memory or experience that you would like to share about your daughter and her progress which may help others?

When Naomi went to Hollyrood the adult autism specific residential home she was very ill and in crisis – as one would expect she completely lost her ability to talk, laugh and write which she loved to do. Over the decade she has been there and now in a community home, her talking has come back and so has her humour – which is quite wicked at times! She can now write the odd poem or two but I think most importantly she can now express what she is feeling much more coherently. These changes have not come overnight but piecemeal throughout the decade. We find we can now take her out to restaurants, to the Blue Bell Railway (steam engines) and she came to her middle sister’s  wedding 2 years ago and will be going to her 4^th sister’s wedding in July this year. When we look back over the last 10 years so much has happened and now she is a completely different person to who she was when she went through the front door of Hollyrood in 2000.

9. As a child, did your daughter stick to a specific vitamin regimen or anything else in particular as regards nutrition or diet?  If so, is this still the case?

As a child we thought Naomi was eccentric but normal – so she ate normally in keeping with the rest of the family. Now she is on a good diet with no supplements other than horse chestnut for her varicose veins.

10. How might one have a glimpse into the life of an autistic person such as your daughter, to read a bit more into their true story(ies)?  Any blogs or resources that you care to share?

I’ve recently started a rolling news on Naomi and an overview of her life with more info to go on. I’ve also started with another mum Heather on her son Josh and . In a few weeks another mum Anna will be talking about a group of mums and will have a rolling news on them as well.

In America there are so many fantastic websites which I Googled and have been left feeling quite inspired by them.

Last but not least which is run by the Disabilities Trust – their standards of care are second to none.

For resources – this is where Google comes into its own. Each country is very different but in the future for my autism website maybe a generic resources article that will take on board the needs of the autistic people of that country. Dr Andrew Wakefield has a website www.callous-disregard.com and in the links page are many associations and societies that can help people in many ways – from wills to how to get the best health treatment for your child.

11. You have taken on the honorable task of shedding light on a portion of our society that largely goes un-noticed: adults with autism.  Please explain the variety of ways that you help this population.

I am slowly building up on articles on the autism website talking about the different aspects of adults with autism. I also do a lot of talking on the ground and always carry leaflets explaining what autism is. You never know who you may meet standing on a train station platform or bus queue! At least 50% of the people working with me are on the autistic spectrum but at the high end of it. Trying to educate people about adults with autism are the forgotten people and tweeting of course!! I also try to mentor some adults with autism as well.

12. With all of the various “hats” that you wear, I can see that you’re a very busy woman!  What is a typical day with “Vicky” like?

Gosh – now you’re making me think, because everyday is different depending on what I’m doing! In the morning it’s reading my emails, making phone calls to sort out interviews for the websites. After lunch I do a lot of my review posting across 3 of the websites and sorting out articles for the autism one and making new contacts for the articles on autism. Walking the dog and when things get too overwhelming on the website front I take to my sewing machine and make quilts or do lace knitting!

I also have to make time for reading books on all subjects for the interviews,  have days when I go out to meet people either interviewing them for the websites or talking about the autism side. Believe it or not the London Book Fair is a great place to talk about Adults with Autism!

All of the above is done with a background of medical appointments for David’s chronic lung disease – he has Granular Sarcoidosis of the Lungs and I have Diabetes and am on Insulin as well as having ME/CFS! As well as that we have regular review meetings with Naomi’s carers and see Naomi on a regular basis along with her sisters.

13. What role does a gluten-free diet play in the lives of people that are living with autism?

From my own personal experience of going gluten free and that of Naomi (my autistic daughter) is that for me I am not grumpy! Add a bit of gluten and even my friends and family will pick up on it. For Naomi – her autism is much, much better and instead of needing 3-1 care she now only needs 1-1 care. Being gluten free does make the autism less severe – it never goes away but becomes more manageable.

14. You shared with me the immense cravings your daughter has for some specific foods which are not beneficial to her. What can you share about this with other parents of autistic adults or children?

Having an immense food craving can mean that the person is addicted to what they are eating, but weaning the person off of the offending food is not easy and has to be done in small stages. I remember how grumpy and angry Naomi was in the beginning but the effort was worth it to see how she has progressed. I know that between us – the parents – and Naomi’s carers a lot of thought was put into how to do everything. Take it slow and find a substitute like gluten free bread and biscuits – look for food that has maize, corn or rice in the ingredients – if soya is tolerated or spelt flour also gram flour and buckwheat flour which is great for all sorts of cooking. Even now we keep a look out for things like corn pasta and spaghetti and for you Tina, your gluten free website is just brilliant.

15. Please share some of the GF resources that you would typically suggest to both children and adults with autism.

Our supermarkets here in Britain are now building up on their Free From produce and our good health food shops are very good as well. In America I know that your health food shops are very good and even in 2002 when I was last in America there was a lot I could eat without feeling hard done by.

There are now lots of books published on gluten free cooking which can be bought from www.amazon.com and www.amazon.co.uk.

16. Do you personally have any statistical information that sheds light on the differences and successes between an autistic person eating a non-GF diet as compared to a GF diet?

I personally don’t have any stats on this, only personal anecdotal info, but I know that in America some of the doctors dealing with autism are very aware that autism and gluten really don’t mix and there is some research going on there.

17. If anyone cared to make a donation to the BFK Autism website, how might they do so?

For any donations, go to www.justgiving.com/BFKautism. This is the link to the Just Giving charity which was set up many years ago to collect money for charities from marathons or events and pass it on to the relevant charity – in my case the Disabilities Trust Adult Autism Services. All donations bypass me and go straight to the Disabilities Trust

18. What are the funds and donations used for?

All the funds and donations are used to help with the facilities for adults with autism, e.g music centre with instruments, sensory room,  multi media raised gardening beds, art – paints, paper, clay etc, pottery room – all the adults love going here and much, much more. There is so much but these are just a few things that the money goes towards helping the adult with autism progress – I certainly know that all of this creative care was instrumental in bringing Naomi out of her severe autistic crisis.

19. Your love of reading shines through on your BFK Books website.  What book(s) are you reading currently as well as interested in?

Ooh – where do I start! These are just a very select few right across the board:

The Red Velvet Turnshoe by Cassandra Clark – an historical crime novel set in the late 1400s – she’s a brilliant writer.

The Holy Man and The Holy Man’s Journal by Susan Trott – Two beautiful novels that are very spiritual and dare I say it healing to read.

Fear The Worst by Linwood Barclay audio book – crime story read by Jeff Harding – had to send a friend into the garden whilst I finished the disc I was listening to! It is just brilliant and addictive listening!

The Mummy Snatcher of Memphis – by Natasha Narayan – a very well researched children’s book set in Victoria times – a good rollicking adventure – loved it.

Horrid Henry audio books are the best stress busters ever – these are officially children’s books but parents will get a great deal of fun from them as well!

Praise of Folly by Desiderius Erasmus – translated by Roger Clarke – this book was first published in 1511 – a classic published by Oneworld Classics. Desiderius pokes fun at the establishment and I have to say – nothing has changed at all!

I Heard the Owl Call my Name by Margaret Craven – an extraordinary book of how a dying priest is sent to the wilds of British Columbia to work with the indigenous people. Loved it.

Callous Disregard by Dr Andrew Wakefield – can only be bought in America on www.amazon.com tells the true story of what happened with the MMR vaccine and the GMC. Quite an eye opener of a book with loads of info.

Stradivari – this is about the violin and how it is made – it is a very sumptuous book with lots of pictures!

20. How many author interviews do you personally conduct in a year (average)?

Approximately 30 plus – can’t believe that but we do a lot!

21. You’re providing a tremendous service by shining the spotlight on these authors, do you have any success stories to share from any of the individuals you’ve interviewed?

Ian Rankin who wrote the Rebus books – I interviewed back in the early 90s on his very first book and he has become a huge success! I was able to do a catch-up interview with him a couple of years ago.

Terry Pratchett – way back in 1992 when I interviewed him – he’s huge now with his discworld series and now TV specials.

Philip Reeves and his Mortal Engine series – teenage books that are so creative and set in the Victorian era.

22. I see that you have also created the BFK Music and DVD site. They look terrific!  What types of music and DVD genres can one expect to find?

With the music website we’ll be reviewing all sorts of music – from Glee to Queen – and all in between. I love Southern Gospel music and folk so they are my areas; Gareth loves classic rock and the classics, whilst Riff who’s just joined us will be doing Be Bop and jazz.

DVD genres: all sorts both modern and classic with a look at the world cinema genre as well.

23. In terms of the DVD site, do you only review contemporary or “new releases”?  Or do you include the classics also?

We review both latest releases, but I think well be specializing in some much older films – everything from the big musicals and the old classic 40s and 50s films, to Avatar and all in between. We’ve also been taking a look at all the old TV classics too.

24. Please share the name of the last DVD you reviewed and a bit about it?  What was your favorite part in this DVD??

Last DVD reviewed but not posted yet is a world cinema film called Riding Alone for Thousands of Miles – a Chinese film about a man who on hearing that his son is dying, rushes to his son’s bedside but his son doesn’t want to see him. His son’s wife gives him a film to watch so he can get to know his son – a promise on the video sends the father on a journey into the heartland of China to film a very special folk dancer. Along the way he meets so many different people and films them.

This is a beautifully shot film that is slow in its build-up but so satisfying. When you come to the end you really feel you have been on a journey with the father. I more than highly recommend this film.

Avatar – a brilliant film that translates to the small screen exceptionally well.

25. Do you work with a team of book/music/DVD reviewers?  If so, how many?

I do work with a team of reviewers – there are about 8 of us right across the board but I guess most of us do book reviews as well!

26. Where do you reside?

I live in England (Britain); always have  – so everyone lives local to me here.

27. Do you sell advertising space at any of your sites?  If not, please explain why.

My webmaster and I made a decision at the beginning not to sell advertising space because it just clutters everything up and doesn’t look good. This is not set in stone and may change in the future.

28. If you provide a newsletter or a way to subscribe to receive updates on new reviews and interviews, how might one subscribe to this?

This is something we are looking at – we do have a Feeds free subscription bit which came into being in March 2010 but I have to say I haven’t really used it yet – this is part of our build-up on the websites and does take some getting used to as it’s based on us inputting into the news several times a week which at the moment I haven’t done. So thank you for reminding me to be a bit more proactive on this one.

29. Now let’s talk about the direction that you’re heading with your cause, what is your vision or long-range plan?

Wow – the big 4 way split in March was one of our long range plans that happened sooner than expected. With the book, DVD and music websites it is a case of providing good quality reviews, interviews and articles such as Spotlight and of course building up on the news side. We will be encouraging more autistic adults to join us with their personal reviews that we can post on the websites and in some cases write their own experiences of how they cope with being on the autistic spectrum..

The autism website because it is so different it is still evolving but I foresee it as an all encompassing site with source info, articles and interviews all in the autism genre. I do have a scientist who is about to come on board. I’d like to see more personal anecdotal stories from parents around the world – so we can build up a picture of how each country is helping or not the parents with autistic children and adults.

I would like to raise a lot of money so that the Disabilities Trust can have a drop in centre for young adults to get diagnosed and have specialized counseling and also for some outreach workers who can go to families caring for autistic children and need help and support. Once we have the prototype then it can be rolled out across the country, but this takes time to be refined and honed locally to Hollyrood in England.

I would also like to be properly sponsored for the websites – paying my webmaster would be good etc!

Education is so important but education for parents so that they know their rights in getting the right kind of help for their children and how to do it.

30. Do you have plans to create more programs in the future?

Yes – these will evolve as more people join us and new ideas are brought forth.

31. Any other specific plans for expansion we can look forward to?

That happened in March and will evolve, refine and hone as we go along, and as website life goes on new ideas come in and I would expect us to expand but how – I think I just need to get over this expansion first!

32. And my last question – Please share one piece of advice you’d like others to read and really understand, taking this advice straight from Vicky’s heart!

The Dalai Lama in one of his quotes said “Never Give up” and I guess that is my mantra from my heart – because if you keep at it, it will happen – also, be like water – flow around the rock, don’t bash yourself on it thus giving yourself serious injury!

Thank you for your time and all you have shared with us, Vikki.

Tina Turbin

www.GlutenFreeHelp.info

* ME: Myalgic means muscle pain or tenderness. Encephalomyelitis means inflammation of the brain and spinal cord. Encephalopathy means altered brain function and structure caused by diffuse brain disease. Alternate names for chronic fatigue syndrome (CFS).

From our home to yours, Tina Turbin
If you have any questions or suggestions just email me at info (at) GlutenFreeHelp.info.