- CALL TO ACTION: MENDIP HOUSE RESIDENTIAL CARE HOME ABUSE SCANDAL
- Treating Autism statement re Mendip House scandal, NAS-run care home for adults with severe autism
- Identifying health problems in autism 1 December, London. CPD educational event for parents and professionals.
- Autism Research Should Be Financed Like Venture Capital
- London Support Group Meeting 18 October
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- September 2010
Joseph was born by C section following an uneventful pregnancy. The second born of our family. He received his Vitamin K shot along with all his baby vaccines. I had RhoGAM shots in pregnancy to prevent anaemia.
Despite being fully breastfed, Joseph was “colicky” and had trouble sleeping. He was a good weight and fed regularly, however, his stools were awful smelling and very “explosive”.
Joseph developed within the normal ranges, albeit on the “slow” end. He struggled to wean, but eventually at age 6 months enjoyed blended home cooked food and still breast fed until 8 months. He then started nursery and continued to develop normally. He struggled with drinking, but eventually used a cup. Age 11 months he got a foot infection treated with intravenous antibiotics, then began a year of constipation, for which he was medicated.
His age 15-month nursery report showed all age appropriate skills with above age for speech and social skills. He continued to eat well and receive his vaccines.
At age 18 months I noticed his speech stopped developing, he became less interested in his story books and toys, and he lost some other skills. He began having ear infections and glue ear, this continued for over a year, each treated with antibiotics, and each time our little boy dropped further away from us, speech stopped, and he became “unreachable” and developed OCD type of behaviours. We were told our concerns were ill founded and “not to worry” all this was “normal”. Age 2 ½ he had grommets and we “lost“ him further into his own world. He stopped eating home cooked food and would only eat processed finger foods. His development stopped and then regressed, he was now age appropriate for less than 12 months. He just sat all day glaring at the TV, and when we removed it, he would self-harm and meltdown, not caring if we were there or not.
At age 3 we knew he had autism. The NHS speech therapist came and he hardly responded, she said to expect very little. The Paediatrician told us he was likely on the “low functioning end” of the ASD spectrum. We were heart broken and started to find other parents who had children like this. It was then we were encouraged to start nutritional therapy.
Initially we removed dairy from his diet, and our little boy noticed us! After 3 weeks he turned and looked at me for the first time in 2 years. He started to be interested in his sibling’s games and joined in. We got tests and discovered he had a huge overgrowth of yeast, he had parasites, bad bacteria and many nutritional deficiencies. We could not understand how this has happened, but the more we learned the more it made sense.
With professional advice we made changes to his diet, these were very hard, and it took a lot of patience, slowly Joseph started to eat better and enjoyed healthy foods again. Initially I found myself in the “free from” aisle, but then realised that most of it is full of rubbish, so then I learned more about home cooking. We introduced probiotics and after 3 days Joseph sang a Christmas carol to us, all the words too! He had never sung in his life, merely been a bystander as all his nursery peers sang along for months. Following that, he sang over 10 more songs in the next week. He became happier, more engaged and speech started to come back.
In the 6 months from starting nutritional therapy he progressed through pre-school at twice the speed of “expectations”, catching up the gap on his peers.
When he was 5 we started ABA (applied behavioural analysis) to help Joseph with the things he felt most difficult, this has been extremely useful and we still continue this.
We are still on this path, and life is so different. The autism traits of refusing to walk, escaping from the car seat, self-harming, staring into space, supermarket meltdowns, sound sensitivity, constant screaming, OCD, ignoring instructions etc are all a thing of the past in our family. Joseph is now happy, plays with non asd peers, is in a mainstream school, gets dressed etc without help, does as he is told, asks for toys, loves shopping, helps with cooking, and is making progress at school. He is currently in year 2 and working on year 1 and 2 levels. He attends beaver scouts with no extra support and has friends. He currently asks lots of questions, some of today’s questions are:
- “What does jealous mean?”
- “Where does the water go when it’s flushed down the toilet?”
- “Where was I before I was born?”
- “Can we go to the park and call for Sam?”
- “Where is my stripy t shirt?”
- “Can I have some Star Wars rebels Lego?”.
We were told to expect his speech would be minimal and he would probably never ask questions.
Some of our key changes have been – removing gluten & dairy, significantly reducing sugar and processed foods, using digestive enzymes, vitamin C, probiotics, selective herbal supplements, using healthy fats and giving magnesium. Also reducing household chemicals, stopping fluoride, using a water filter.
Yes, he still has autism, but he is now high functioning, has no behaviour issues and it’s only professionals that notice. We fully believe that if we continue this path Joseph will totally recover from autism, had we not discovered nutritional therapy, then I am sure this would not be the case.
As a family we all eat better, and Joseph is now learning to prepare his own food and take his supplements independently.
Disappointingly the NHS professionals do not believe this and have actively encouraged us NOT to take the action we have. They believe Joseph’s improvements are due to him “growing out” of these things, not to our interventions.
I hope our story helps others, we don’t believe that autism is fully genetic, we believe it is biomedical, an environmental trigger that occurs in a person with a genetic pre disposition, similar to smoking causing cancer in some people (not all). If I had the time again, I would be more attentive to vaccines and medicines in particular. I would also have taken action earlier.