We are the parents of Scott, a beautiful loving two years, eight month old boy. At the end of May 1999 we learnt from a paediatrician we were referred to in England that Scott has difficulties within the speech and language subgroup of the broad autistic spectrum. We were New Zealanders based in the UK at the time, but we returned home to New Zealand a few days later. Our world had shattered, and we wanted the security of familiar surroundings.

Tim, Scott’s dad, had seen some of Billy’s programme, about secretin on TV in the UK, and had taken note of the web site. This web site today, is our main source of information about secretin, diet, and intervention.

Having looked at Billy’s web site we decided to try Scott on a gluten and casein free diet. There were some similarities between Scott’s case and Billy’s. A lot of antibiotics for ear infections in his first year, MMR, severe glue ear and grommets at two years. Although we don’t think Scott had a leaky bowel, he did have very ‘loose motions’ several times a day. The next thing we did was get Scott’s food intolerances checked, by a holistic GP. Other medical advice when asked said there were no such tests. Gluten and casein did not show as intolerances, but he was intolerant to sugar and a few other things. In taking Scott off sugar, we have had an immediate improvement in his behaviour. His ’bouncing’ has been significantly reduced and he is a much calmer little boy, now able to concentrate and participate in play, jigsaws etc. The holistic GP felt Scott did not need to be on a gluten and casein free diet, so that night, we gave Scott cow’s milk again. He immediately got diarrhoea, so we returned to Soya milk. Recently I have tried Scott with bread again, containing wheat flour. We have done this twice at lunchtimes, and on both occasions in the afternoons, Scott developed extremely red ears, which really irritated him. (I had very rarely seen him with his red ears, since taking him off casein and gluten.)

Our first visit to a paediatrician, in NZ (from the private sector), offered advice on who to contact (Autism Assoc. Auckland, and a few support services), and put us in touch with Special Education Services (SES). When we asked about secretin, we were told it did not work. We have since received an appointment with a paediatrician, through our public health system; we do not know what to expect from this. The paediatrician, we saw in the UK, wrote a report of her opinions that concluded: ‘Scott will benefit from early and vigorous intervention’. Through SES, Scott currently receives one hour’s help, every two weeks, from an early intervention teacher and one hour’s therapy, every two weeks, from a speech therapist. Both are good and Scott enjoys and thrives on the time they spend with him. We also learn how to stimulate Scott. Neither is a specialist in autism. This to us does not constitute vigorous intervention.

We know Scott needs more therapy. We see the huge benefit from the one-on-one with him. We are in the process of trying to find out what is available for us to do here. We know that neither of us cannot physically and mentally devote the necessary time to Scott to be his one-on-one therapist. Scott also has a four-year-old brother who also needs his mother’s time. We are facing the reality of funding Scott’s ‘Early Intervention’ ourselves. How? - we do not know how to finance this and get quality resources. We would appreciate learning what support is available in other countries and opinions on vigorous intervention?

Tim and I attended the AGM of the Auckland Autistic Association on 26 August 2020. What we saw and heard did nothing to raise our hopes for the future. The AGM was attended by a small group of predominantly concerned parents. It was apparent from their extensive experience that there is no structured support available, Government support is fragmented over a multitude of departments and that you have to fight and compete hard for every little scrap of support. For some it seems they receive no effective help given the time and effort put in. I managed to talk Tim into becoming a committee member; he is so much better at these things than me (sorry Tim!).

Our objective is to learn as quickly as possible for ourselves and Scott. We also want to ensure that other parents who find themselves in the same position don’t have to repeat the total knowledge quest that you easily find yourselves in. Collect the knowledge and share it. We have been in the world of autism for just over three months, what we write is our interpretation of what we have discovered so far. Our children with help have a much better chance of coping and contributing in this world but we are afraid of not doing enough early or of getting it wrong.

Please contact us via the Autism File.