Writing some 3 years ago, we described Sean’s progress after 3 months of treatment at the age of 8. Even after this very short time he had shown ‘massive and rapid’ progress in terms of destructive, disruptive and aggressive behaviour, social isolation, poor eye contact and attention, gut problems and toileting and sleep pattern. His sociability had improved greatly, although disordered speech, poor diet, rigidity and inflexibility of habits and autistic bodily movements remained but were showing early signs of improvement.
Now, at the age of 11, his level of progress might be better described as a ‘seismic shift’. Sean’s treatment has progressed through the stages of treating intestinal problems and the areas where vitamins, minerals and amino acids were deficient to detoxification to rid him of toxic heavy metals and on to Methyl B12 therapy and measures to support the immune system. We recently repeated an ATEC, an online assessment tool used by clinicians to evaluate the effectiveness of interventions with ASD children. We had originally completed this based on Sean at around age 5 and he scored 157 in total, rating him as severely disordered in most key areas. He currently scores 15……
Sean’s communication skills began to improve quite rapidly (credit is also due here to his Speech Therapist and Support Teacher). His Speech Therapist recently repeated tests of his ‘phonic processing’ and this is now in the normal range, from a very low starting point. The clarity of his speech and his understanding of others have improved beyond recognition. He became determined to express Harry Potter spells, like ‘wingardium leviosa’ and this proved so positive in helping his pronunciation that his Speech Therapist used them as a tool in sessions to very good effect.
Better communication has allowed him to participate more at school and to form better relationships to the point where he is now capable of initiating and maintaining normal relationships with other children (in short he has mates). Social development has been massive and his range of interests is like any other 11 year old boy.
Intestinal issues are a thing of the past, to the relief of our noses and bowel function is excellent, so it has been a long time since he needed any help or frequent changes of underpants. He had a prolonged period of gluten and casein free diet, which supported treatments on his gut.
Sean became Type 1 diabetic 18 months ago, so we had to relax restrictions on gluten with no detrimental effect, luckily. He has amazed us how he has accepted 6-7 blood sugar tests and 4-5 Insulin jabs each and every day. This is a good example of how calm he is in comparison to the bad old days.
A few months ago, Sean had the chance to go away for 5 days to an outdoor centre with his school. Hitherto, he only allowed one of us to do his Insulin jabs. He worked it out for himself, that in order to go he needed to let someone else do his jabs. He came to us himself with the idea because he wanted to do ‘all that cool stuff my mates will be doing’, so we trained a support teacher to do his insulin and he went away, participated fully and had a fantastic time. It was also the first time he had been away from us longer than overnight.
FLEXIBLE, IMAGINATIVE, INDEPENDENT….MAKING DECISIONS ABOUT HIS OWN LIFE……..HANG ON A MINUTE!!!! HE’S NOT SUPPOSED TO BE ABLE TO DO THAT……HE’S AUTISTIC REMEMBER???
The main constraint on him going away was his diabetes. ASD never entered our minds as there are now no behavioural issues preventing Sean being a full participant in life. There have been too many occasions to list, especially in the last 18 months, where we have said, ‘ hang on, he’s not supposed to be able to do that but he’s just done it’……..He has also made his own decision on which High School he will attend next year and been able to explain his choice to us.
Sean has developed into the real Sean, the wonderful boy he really is, a boy who now has the chance of a positive and independent future. He is a person with imagination and individuality, who attends mainstream school and is socially well integrated. The ‘autistic’ body movements have disappeared, with the exception of a very odd way of running. He can, however, even laugh at himself. He no longer stands out as different in a group of children.
As his pace of learning was restricted for so long, when his peers were moving much faster, education, in particular literacy, now need to be the central focus, since he is now more receptive.
His treatment programme needs to continue. We still have a way to go but hopefully soon some aspects of intervention can be put on a maintenance regime. Results so far are fantastic but nobody should imagine that it has been without enormous effort and commitment. Even when your child is totally uncooperative, you still have to find ways to get them to take supplements and treatments because for many the result can be not just worthwhile but life changing.
Without ATT and Dr. Lorène Amet especially, we dread to think where Sean might be…….back in the bad old days of bowel problems, head banging and self-harm and uncontrollable aggression and temper. We prefer the real Sean, who has been given back to us.
Thank you ATT and Caudwell Children for financial support.
Sean’s Story (Testimony 1):
Sean started treatment 3 months ago but already he is showing very encouraging improvements. Aggressive behaviour and major tantrums have all but disappeared and he is much calmer. He is now sleeping much better, ‘touch wood’, and he is always saying, I’m hungry..’ Although his diet is still limited, he is enjoying eating. He loves gluten-free chicken nuggets and even asks for coleslaw, nuts, cucumber and red pepper…unheard of 3 months ago.His stools are much better, no longer messy and he is more independent as a result. Sean is more affectionate to people he was previously indifferent to and is relating to people, even strangers, differently, initiating conversation about meaningful things. Sean’s speech is still disordered but several people have said that they understand him much better and he seems to understand them better. His teacher reports he is more confident and is playing with a wider range of children and has even been helping other kids with ‘cutting and pasting’ in the computer lab at school. He is also developing more variety in his play, thankfully. This may save me from personally killing Harry Potter.
Sean has amazed us by agreeing to take his supplements in capsule form, which has helped with his treatment. He now asks for his ‘vitamins’, morning and night. Sean is now eight. He was diagnosed with ASD at six but the Problems really began around three years. He lost eye contact, his behaviour became disturbed and aggressive and he lost any regular pattern of sleep. He became almost ‘phobic’ of most foods. Speech was non-existent at this stage. Sean has developed in the meantime, slowly, with a lot of effort and support but his recent progress has been massive and rapid. Sean surprises us almost every day. The real boy is emerging more and more and this is wonderful. Sean’s reading, confidence with reading and word recognition has also improved significantly. This is not only evident in his reading homework but also being able to read road signs, when we are out. And. Sean now eats lentils and vegetable soup! More importantly, Sean is a much happier boy with a cheeky sense of humour!”.