It must be remembered that the possibility of diet triggering any form of neurological disorder would not, at that time, be taken seriously at all, as it just did not fit the accepted wisdom.
The Autism Research Unit at the University of Sunderland was established 25 years ago. The history is fascinating and, hopefully, anyone considering following this route can avoid certain errors that we made. Jamie Shattock (son of Paul) was diagnosed with autism in 1975. Although the “blame the parents” theories had been, officially at least, replaced by the notion of an organic disorder, the ideas had not entirely disappeared from professional practice and still reared modified heads from time to time.
Being resident within a school of pharmacy, we had access to many medical, pharmaceutical, analytical and biochemical publications together with colleagues who would inform us of any developments that could be of interest. In 1982, Ritvo reported a very preliminary study on the use for fenfluramine, a slimming drug, for treating autism. It was intriguing, but did not make a lot of sense pharmacologically. At almost the same time (1979), Panksepp published a very speculative paper suggesting that opioid peptides which occurred naturally within the brain (endorphins) could be implicated in the causation of autism. These ideas struck cords with a number of parents and professionals, and I (Paul Shattock) was moved to contact a very well-known and respected psychiatrist to ascertain his interest in supporting some ideas for research that were developing at Sunderland. He suggested, understandably, that I, as a parent, might lack the objectivity appropriate for such research. It was Lorna Wing, a parent and one of the heroic pioneers of the autism world, who told me, in her characteristic forthright manner, that this was utter nonsense and that such “advice” should be ignored.
We felt that Lorna was correct, and the Autism Research Unit was born. It was decided that we should review all the available literature (of which there was not much of serious scientific value) to determine which avenues would be most worthy of exploration. A psychology graduate with a personal interest in autism, Mark Ramm, was employed for the purpose and paid a pittance. After a year he had accumulated large amounts of information and a pile of research papers, and it was decided that this information could be made accessible to professionals and potential researchers throughout the world.
For the next 13 years, we produced a bimonthly bulletin “Titles in Autism” that listed all the research papers, book chapters and incidental papers that we could locate using the abstracting services then available, and by scanning hundreds of journals on a systematic basis. There were also annual supplements listing on “Professionals in Autism” and “Work in Progress” designed to encourage contacts and disseminate ideas throughout our comparatively small world. The information was stored on our state-of-the-art DEC Rainbow computer with a hard disc drive of 40 megabytes. By interrogating our database (which could sometimes take up to 45 minutes!) for keywords we responded to letters and phone queries from all around the world. Initially, we were funded by The Manpower Service Commission, which was a government sponsored job creating enterprise. There was also financial support from our local Tyne and Wear Autistic Society and later from the National Autistic Society. Of course, the University of Sunderland always supported us officially and personally through colleagues and students.
One of our objectives was to encourage existing research groups to “think autism” rather than performing their own clinically irrelevant (as we saw it) esoteric studies. Our first success was within our own University where Dr. Fred Rowell (as he then was) had read some of Kalle Reichelt’s work on diet and decided this was worthy of investigation. In spite of his very best efforts, we were unable to replicate the results Reichelt had reported – and we were not alone in that respect. Indeed, our researcher presented his rather unsupportive results at an international conference, organized by the National Autistic Society, in Canterbury in 1986. At this time we had not met Kalle Reichelt, so when this huge Norwegian in a blazing red shirt stood up and commented adversely on our laboratory skills, there was a combined gasp from the audience. Two days later, the BBC called me to ask about this “conflict,” but it was explained that this was just part of the “cut and thrust of academic debate.” After this altercation, we met with “Tiny” Reichelt and began to appreciate his wisdom, kindness and tenacity in a way that is not apparent from reading scientific papers. It is true to say that it was only his patent honesty, integrity and willingness to explore all possibilities that kept us in the game. It was the singer not the song that was so seductive.
As previously indicated, other researchers had also failed to replicate this pioneering work, and so the notions were in danger of falling into disrepute. Our researcher (John Gilroy) went to Norway and was able to perform the analyses. When he returned to Sunderland, he was unable to get the same results. We began to suspect the quality of the reagents that were being used during the analytical procedures and checked ours most carefully. They were fine. We then obtained reagents from the Norwegian team and they were much less pure.
At the risk of inciting a second wave of Viking invasions, this time featuring laboratory technicians, we feel the need to explain a little further. Tourists to Scandinavian countries often comment on the high price of alcoholic drinks, and the Norwegian government found it expedient to include some particularly unpleasant ketones in laboratory grade alcohol. Once we learned this we added these same ketones to our (British) laboratory grade materials and obtained results similar, but not identical, to those obtained by the Norwegians. However, by this time we had developed other methodologies based upon high performance liquid chromatography (HPLC) which were much simpler and quicker to perform and which are still used today. Some years later, Tiny discovered that his alcohol had been adulterated for years without his knowledge. Someone had been removing a proportion of the alcohol and replacing it with isopropanol. To quote Kalle, “This was not funny.”
For this reason, it had been impossible for anyone to reproduce Reichelt’s results and, at the time, severe doubts existed about the whole area of research. It must be remembered that the possibility of diet triggering any form of neurological disorder would not, at that time, be taken seriously at all as it just did not fit the accepted wisdom. It must also be accepted that if the technician had not been removing and replacing the alcohol with isopropanol, the method would never have worked in the first place and the whole concept would have been stillborn.
There is another fascinating element to this tale. The ideas about gluten and casein free diets having benefits for people with mental disorders originated with Dohan over 40 years ago (1966), but his ideas were dismissed and he was generally regarded by the medical establishment as a maverick and heretic. Dohan died on the very day that Reichelt’s first paper, supporting his views, was published. It is said that he had a copy on his deathbed.
Kalle Reichelt is a giant physically and intellectually. It brought great pleasure to his many friends all around the world when, in 2005, the King of Norway presented him with a gold medal in recognition of his contributions to science.
Meanwhile, our own work was progressing slowly but surely. The results were meaningful yet sometimes ambiguous and difficult to interpret. It was clear that there were elements in the urine that differed in children with autism from that of unaffected children, but it was difficult to define the differences with the precision required for publication. Also, in those days, there were no conferences dedicated to biological research into the basis and treatment of autism and, therefore, no forum for discussion. We decided to organize our own event. In 1988 we held the first of our annual series of conferences at the University of Durham designed for researchers active in this field and were astonished and delighted with the response. These residential conferences were attended by 60-100 researchers and practitioners and were designed to encourage the sharing of ideas, plans and (sometimes) half-baked and innovative ideas, and to link to actual practice wherever possible. Many firm and lasting friendships were made at Durham and, as well as working hard, we played hard and quenched our thirsts long into the night.
In January 1995, under the direction of the late Bernard Rimland, the Defeat Autism Now! group held the first of what was to become a legendary and world changing series of meetings and conferences. The situation is very different now. The Internet has rendered our computerized system obsolete and has allowed immediate contact between researchers. Technology for analysis and understanding of the human mind have developed phenomenally, and there are numerous research-based conferences and publications prepared to accept good quality research. For autism, the modern era has begun. The right questions are being asked and answers are being revealed.