- TA Clinical & Research newsletter for professionals – Issue 2 out!
- Century-old drug offers new hope for autism treatment
- Autism charity calls for better medical care for people “left in pain or to die prematurely”
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Hugo was born on 26th August 2006. After an initial difficult period of colic, which we treated successfully with cranial osteopathy, Hugo thrived. Despite some misgivings, we gave him all his childhood vaccinations at the suggested dates, including his MMR at 13 months. At the time, he appeared to have no ill-effects, although with hindsight, he did develop eczema at around 4 months following the bulk of the vaccines, which we found strange as we had no family history of this or any other related conditions. Other than this however, Hugo was a happy, contented baby. He met his developmental milestones and crawled, babbled and generally delighted those around him.
By the age of 15 months, Hugo had started to combine 2 and 3 words and was making efforts to dress himself and could feed himself appropriately. He was drinking goat’s milk as cow’s milk seemed to exacerbate his eczema. Whilst we didn’t realize it at the time, his permanent loose stools, often containing large amounts of undigested food, were not normal. However, everything else about him appeared to be and we had no concerns.
At this time, I suffered a very serious car accident and was hospitalized. I came home after 10 days but was wearing a halo brace (I had broken my neck) and was unable to care for Hugo. We had to employ a Nanny to help and there were many months of upheaval and distressing disruption for Hugo. I was also pregnant with our 2nd child Felix, at the time of the accident and so once things started to get back to normal with my recovery there were only a few months before he was born, causing further disruption to Hugo.
Over these months, Hugo began to be more and more withdrawn and seemed to suffer from one virus after another. He had colds, stomach upsets, chicken pox, tonsillitis and lost all appetite and quite large amounts of weight. He became more controlling and rigid over his environment and life generally and lost all interest in activities apart from puzzles, which he would do all day given the opportunity; and TV – specifically Postman Pat, over which he became obsessive, demanding particular episodes and screaming uncontrollably if they were not put on. He had developed sensitivity to sounds and bright lights and would lie down and scream in supermarkets with his hands over his ears. He had no sense of danger and would simply run off in the park or crowded places and would no longer respond to his own name so catching him again was impossible. He would only eat certain foods in a particular order and if certain music or TV programmes were playing. He would only walk out of the house in a particular direction to a particular point in the road and would then refuse to go further. Our world was becoming increasingly smaller and more controlled and Hugo was very difficult to live with. Whilst the medical professionals who saw him kept blaming the viruses / illnesses for his lack of energy and appetite, it became apparent that Hugo had actually lost skills too. By the age of 2.5 he could no longer use cutlery or dress himself and his speech had reduced dramatically and he had started adding odd letters to the single words he did use, and using echolalic language (although we did not know it as this at the time). The little interest he had shown in Felix when he was born had disappeared, and over the months it had got worse as Hugo went from ignoring him, to becoming increasingly aggressive towards him and would hurt him if left alone with him.
By this time Hugo’s nursery had raised concerns about his concentration levels but we laughed them off – pointing to the fact that he could sit for hours concentrating on 50 piece puzzles and completing them without help at just over 2 years old. Everyone else, including our GP, had repeatedly reassured us that there was nothing to worry about and we still felt that there was a large element of unresolved trauma following my accident which was playing a part in his behaviour. Hugo had suffered months of sleep problems and flashbacks in the months following the accident. He had gone on to reach a point where he would refuse to go to sleep unless one of us sat in his room, sometimes for up to 4 hours each night and would appear to ‘wake himself up’ to try and avoid dropping off to sleep. We thought this was simply an extension of the nightmares he had suffered previously. We were pleased therefore, to be referred to the multidisciplinary Child development Team at our local Hospital as we believed Hugo was going to be given a full ‘health MOT’ according to our Health visitor, to determine what the real problem was. This was in September 2009 when Hugo had just turned 3 and we anticipated being given some answers as to what was causing all the problems with his physical and mental health. The diagnosis, of ASD, given to me at 10.30am on the first day of the 2-day assessment was, therefore, a devastating and unexpected one for us. With hindsight, our own parental views on the referral forms actually read like a textbook description of ASD, but we were totally unprepared and knew nothing about the condition.
The journey out of ASD
Having been offered no help at all from the hospital, other than a place on a waiting list for a ‘newly diagnosed parents’ course taking place in several months time; I went into Internet overdrive and scoured for hours to see what we could do. I read about the GFCF diet and decided that I could implement this myself without too many problems. We had Hugo’s urine tested at the University of Sunderland and it indicated that he would benefit from the removal of both substances from his diet, although by the time we got the results we had already tried removing casein as I couldn’t bear to be doing nothing! For Hugo, the effects were immediate and amazing. Within 2 weeks, Hugo’s sleep problems had effectively disappeared and he was falling asleep without our presence and staying asleep. The Psychologist to whom we had been referred couldn’t quite believe the dramatic turn-around but was very happy to discharge us. With the removal of gluten from his diet, Hugo appeared to be less ‘spaced’ and was definitely becoming more ‘with us’ instead of in his own world. By this point we were hooked and had realized that if we wanted to help Hugo, we would have to get on and do it ourselves.
I did more research and decided that I wanted to start an ABA programme with Hugo. This was a strain financially and on us personally as we had to learn to cope with a team of tutors in our house full-time. We outgrew our home and ended up moving so that Hugo could have somewhere quieter to work sometimes and so that Felix could have somewhere to play as at 18 months old, he was becoming increasingly disruptive to sessions by this point! We were lucky enough to find a fantastic PEACH Case manager and a team of 3 talented tutors who began the task of teaching Hugo a whole range of skills to help him regain the skills he’d lost, learn new ones and generally function back in ‘our world’ again. Again, the effects of the programme were immediate and huge. Hugo began to learn skills such as toileting, speech, interaction with others and importantly for us, how to play and live with his brother. We were taught how to help him to become less rigid and over the months he steadily became better at this. We felt very strongly however, that without the initial dietary changes that we’d made, the programme would not have been nearly as successful. We could see that with the removal of gluten and casein, Hugo had been more focused and able to concentrate on learning things. We were keen therefore to continue to look at biomedical options alongside the ABA programme.
Specific Carbohydrate Diet (SCD)
Having moved house and having done research for many months we then decided to take the plunge and try the SCD with Hugo. The idea of being able to ‘heal’ his digestive problems rather than simply avoiding troublesome substances was very appealing, but we knew it would be hard work. Hugo was almost 4 when we made the change and so was thankfully still young enough to eat things which were different from his peers without noticing too much. The first few months on the diet were quite difficult, with Hugo suffering regressions and lots of die-off / detox reactions as his system adapted to the new regime. However, for him, the breakthroughs following these regressions were almost unbelievable in some cases and the jumps in development, speech and language were astounding. After 3 weeks on the diet, Hugo ‘cracked’ toilet-training, which we had been working on for many months before that. After 3 months on the diet and following a regression, Hugo began to talk in full sentences, having only used 2 or 3 word phrases previously. This happened literally overnight and he has never looked back. He remains on the diet although we are hopeful that he will be able to move away from such a strict regime within the next year or so. He now eats cheese and other dairy products without issue, which indicates that his casein sensitivity is vastly improved. He now has far more energy and will jump on the trampoline, run around and is learning to ride a bike, which he loves. He is very healthy and is rarely ill, recovering from any illnesses far quicker than the rest of us do! We attribute this improvement in his health solely to the diet, as we hadn’t added in any supplements at this time.
With such huge successes we searched for more biomedical interventions which we could try. We had continued to see the same cranial osteopath who had treated Hugo as a baby and he saw Hugo regularly following his diagnosis. The treatment seemed to help Hugo and was particularly helpful in supporting him through any periods of eczema flare-ups caused by die-off reactions from the dietary and other interventions we were doing. Whilst we were not always sure of the effect it was having Hugo was always calmer, slept better and seemed ‘soothed’ following the treatment and we saw it as another piece of the puzzle to try and help Hugo improve.
Having used homeopathy whilst pregnant and on both children for various conditions, I then found out about CEASE therapy to assist with detoxification. It transpired that a well-respected Practitioner of this therapy lived around 15 minutes from our home and so we decided to try this out. We began with a DTP remedy and saw instant (negative!) effects which told us something was working. Over a period of some months, we had quite dramatic detox reactions including fevers, weeping ears and months of warts covering Hugo’s hands and fingers. However, the gains were also clear and Hugo became visibly happier in himself and his speech and social interaction took further huge steps forward. Following this therapy he was reassessed by a Speech therapist who had assessed him previously. When diagnosed, Hugo had an 18 month – 2 year delay in his comprehension levels and a delay of approximately 9 – 12 months in his expressive language skills. These had improved over time with Speech therapy and the ABA. However, when assessed in May 2010 after 6 months of these therapies the delays remained quite significant. However, the reassessment in July 2011 following the SCD and CEASE therapy was dramatic. It found that he was at an age appropriate level or above in all categories assessed except for one relating to understanding complex instructions (where he still had an approx 9 month delay). This was truly amazing progress and it was really satisfying to realize that the biomedical treatments had led to such a positive measurable improvement.
In September 2011 and having delayed the start of school for a year to allow Hugo to do more ABA, he started Reception full time. He is at a small independent mainstream school with a group of friends with whom he spent the previous year in nursery. The school have been extremely supportive of our interventions with Hugo and we have trained the kitchen staff to cook him SCD compliant lunches! He has an ABA tutor with him as a shadow, but for parts of the day he is able to manage perfectly well without any support. He is a popular member of the class with several ‘best’ friends (who change on a daily basis!). He adores school and is making amazing progress in all areas of learning. He is a happy, funny, cheeky, and caring little boy who we never dreamt would get to where he is in such a short space of time. We know that there is still work to do and that he will continue to face challenges as he gets older and life and school become more demanding. However, we feel that we couldn’t be in a better position to meet those challenges and feel truly blessed and lucky that we have managed to regain the little boy who we saw slipping away from us 3 years ago. Anyone meeting Hugo now for the first time would not realize that he had an ASD diagnosis and for us, that was a situation that we never thought would happen. We look forward to seeing where he will go from here and we truly believe that the sky really is the limit for him!Visit this page for more Parents’ Stories of Hope
Our charity is run by parents and we value parent experience. As such, we encourage parents to share their stories. Parent experience cannot be viewed in any way as medical or therapeutic advice. Each parent story is just that: one account as shared by one family. Your family’s experience may be completely unrelated.