The following narratives were written by parent. Please read their stories and take comfort that you are not alone and that your situation is not hopeless.
I am a graduate of the Yale Law School, with extensive experience in complex commercial litigation. Today, however, my profession is procurer of unprocessed and unadulterated foods, personal chef, home health aide, therapy provider, medical researcher, and appointment coordinator for my seven-year-old son, Martin.
The position is full-time, because Martin is recovering from autism.
To say so openly—that Martin is recovering from autism—is new. For the past several years, I’ve kept my mouth shut about Martin’s recovery process.
When Martin was diagnosed with autism at age two, in October 2010, he was incapable of falling asleep, and often incapable of staying asleep, unless physically restrained. My husband (Adrian) and I slept in shifts, one dozing while the other pinned Martin’s ankles to keep his little legs from flailing. On the worst nights, we had to work together, one holding Martin’s lower body, the other hugging Martin’s arms and shoulders until his little body could find rest. Daytimes, Martin alternated between running in circles and lying on the floor, where he pushed a toy car back and forth, making sing-song noises. Although he could echo words, he could not independently string words together. He had no concept of “yes,” or “I.”
The first months after diagnosis, Martin spent his waking hours undergoing conventional therapies—as much as 40 hours per week of Applied Behavioral Analysis, occupational therapy, physical therapy, speech therapy. Yet nothing changed. He still didn’t sleep, or put words together, or make eye contact. Nothing changed, except that Martin became resistant to therapy.
At that time, under those circumstances, a tip from a friend brought me into conversation with “Annie,” a physician on leave to care for her own children. Yes, Annie told me, her son used to have autism. Now, at nine years old, he was fully recovered. Autism is symptomatic of medical disorders with a genetic component, Annie explained. She treated the underlying disorders, and the symptoms resolved.
That first day, over hours on the phone, Annie introduced me to healing diets, genetic profiling, supplementation, avoidance of chemicals and other environmental dangers. Immediately I compiled a binder of research on recovery from autism, which I handed to Adrian with the words, “This is what we’re going to do.” I made an appointment with a doctor who was pioneering the field of autism recovery, and Adrian and I agreed to abandon most traditional therapy and instead begin an extensive course of dietary, biomedical, and homeopathic interventions. “Biomed,” we call the treatment for shorthand.
In the beginning, Martin’s progress was swift. Within six weeks of eliminating gluten, dairy, soy, corn, refined sugar, most fruits and starches, and everything processed or artificial from his diet, Martin was falling asleep unassisted and, most nights, staying asleep. He no longer clenched his gut in pain. As we introduced supplements and other interventions, Martin stopped drifting. His lethargy lessened. He replaced his constant whine “You want, you wan, you wah…” with the pronoun “I.” He responded to his name. Adrian and I were ecstatic.
With the zeal of a new convert, I was ready to proclaim, “Autism can be treated! It works!” But it didn’t take long to discover that, even among fellow special-needs parents, I should keep my enthusiasm to myself. In 2011, the idea that autism is symptomatic of health conditions, instead of a psychiatric or neurological disorder, had not yet entered the realm of what most parents were willing to believe. People who knew nothing of autism recovery hounded me for depriving Martin of a “normal” childhood by withholding cotton candy and pizza. Others accused me of spreading disease by campaigning against vaccines. It didn’t matter that I’d never said a word about vaccines; to be recovering a child from autism was to be one and the same with Jenny McCarthy.
Soon I was hiding the fact that we do biomed. It’s allergies, I said. Martin has food allergies, so I bring his food everywhere. The supplements, I tucked into a cabinet until no one was looking. The B12 injections, I didn’t mention. Shouting autism recovery from the rooftops? Not so much.
But times and attitudes change. What’s going on in the laboratory is starting to catch up with what’s been going on in the field. Media reports are cropping up about the connection between autism and gut bacteria, immune disorder, proprionic acid, mitochondrial deficits, pesticide exposure.
It’s 2016 now. Martin attends second grade in a school that targets speech and language delays. One evening, at an event for parents from Martin’s class, the topic turns to what we do for our children outside of school. Emboldened by the knowledge that at least one of Martin’s classmates follows a gluten- and dairy-free diet, I admit, “We do biomed,” and look for the cold shoulder.
This time, it doesn’t come. The half-dozen mothers, apparently recognizing the term “biomed,” nod approvingly. Two ask me to explain further. One mother says that going gluten-free helped her son, but that she found it too hard to sustain long-term—could I help her with some recipes? Another mother says that three of her four children have some form of sensory issues, and she wonders whether the whole family could follow a biomedical protocol.
And I realize: I don’t need to hide this anymore.
This is our story. We are a biomed family. My son is recovering from autism. He’s not there yet. He still has social challenges and an infinitesimal attention span, and his mitochondrial disorder makes him quick to tire. But in five years, Martin has developed into a kid fully engaged with the world, who makes eye contact, responds to his name, speaks in complete sentences (he’s bilingual), asks questions, has very few repetitive behaviors, swims, rock-climbs, rides his bicycle, ice skates, skis, and looks at his mom’s face for reassurance in difficult situations.
I’ve given up much to walk the biomed path with Martin.
But how could I regret that?
Thomas is 9 years old and was diagnosed with autism at the age of 2.5. At that point I was pregnant with our second child Fiona who is NT. We very quickly learned about GF/CF and started GF diet a month or two later and went CF also when Thomas was 3 years and 4 months. Thomas improved on the diet but did not have the amazing results that other people have reported. Around about that time we also started ABA and have continued to use this approach to date. Thomas definitely made progress using these interventions but it was quite slow and he seemed to loose skills frequently and we would continually have to go over old ground. Then in October 2004, Thomas became constipated, it resolved (or so we thought) and then Thomas became incontinent with what we and the doctors thought was diarrhoea Thomas went from being a boy who was predominantly independent with toileting to being incontinent of faeces from 15- 50 times a day. It was awful. It impacted on all aspects of family life. Even going to the park became a nightmare. In October 2005 we went to the Edinburgh Treating Autism conference and were inspired. We had our first consult with Jean in November 2005.
It was a very difficult time, but to be honest we felt that we could not sink any lower at that point. Thomas’s gut was so bad that he was becoming aggressive. Biting, hitting and was certainly less happy than normal. We did the full DAN testing and it highlighted how bad Thomas’s gut was with yeast, parasites and bacteria. One of the worst stool results Jean had ever seen. At that point Thomas’s ATEC score was 93. We changed Thomas’s diet to also be corn free, soya free, yeast free and sugar free. We saw immediate improvements, but he remained incontinent and continued to bite etc. The amount of supplements Thomas was on gradually increased but even that was fraught with difficulty as he seemed to react to the most simple things e.g. he is still not on any fish oils as everything we try sends him wild. However his concentration started to improve and he was so much less hyperactive. His receptive language and comprehension really came on and the school were noticing these improvements too. And over these few months his biting decreased from 4-6 times a day to about once a week. His ATEC score was now in the 70’s.
In April I went to the DAN conference in Washington. Thomas was still incontinent and I wanted to try to resolve this. At the conference one of the doctors said that Thomas had to be constipated and that we should get an x-ray done. He also gave me some pointers on how to keep him clear. I learned a huge amount. It really complimented everything that Jean had been telling me. SCD was also very big at the conference. We decided to go down that route too and started SCD on 17th April. So far SCD has made the single most difference to Thomas. We kept Thomas off school for a week to introduce it and he changed in that week. When he went back to school everyone was very impressed by him. He was even more calm, had even better concentration and as a result could participate better in his class lessons. He still occasionally bit and had occasional off days but they were definitely on the decrease. We got Thomas x-rayed and it showed that almost his whole large colon was impacted. We cleared it using enemas and maintain his movements on oxypowder but there is a fine line between movements and diarrhoea, we aren’t quite there with that yet and so many other things affect that too especially die off, gut bugs and SCD regressions. But on those very difficult days if I compare what he was like before biomed I am always left with the feeling that this is right.
I find that it is always good if you can compare big events that happen rarely e.g. we went to the same villa last summer to this. The difference in Thomas was great. Last year we took Thomas to the toilet every 15 minutes. Believe me it was as bad as that, we weren’t on holiday alone and 4 of the adults took 15 minute slots in turn. I could still tell you that my slot was quarter past to half past the hour and my husbands was half past to quarter too. This year there was none of that. Last year we had to hold his hand going everywhere as he would run off. This year he walked beside us everywhere with out holding hands. On our last day we went to a water park. Thomas and his sister had a great time and for the first time in our lives we were able to let Thomas and his sister play on the slides without an adult going up and down beside them. We did have to station our selves at different points of the pool to make sure we didn’t loose Thomas but it was fabulous. Looking back. What a change!
Thomas’s expressive language is slowly coming along too and his receptive language is really quite good. He does still occasionally bite, but I can generally attribute that to die off/gut bugs. We have a very long road to continue traveling along but we will get there with the help of Jean who is invaluable.
As I am sitting here writing this e-mail Thomas keeps coming in to play tag!
Thomas’s ATEC score is now about 63.
We have yet to start MB12 injections but hope to start in about a month and then hopefully chelation. And although I know it is a long road, for us it has been very worthwhile. In fact every parent I have spoken to has felt the same. All of our children are different and some will recover and others will not but they will ALL improve and that is all I want. I want Thomas to reach his potential, whatever that may be. I know that Thomas is happier and healthier and we as a family are also happier.
I hope that Thomas’s story helps you. Have you joined Autism-Biomedical-Europe@yahoogroups.com. It is a mailing list full of parents just like you and me. They have a wealth of knowledge and all members are there to support each other. If you haven’t already joined I would recommend it.
Good luck and best wishes.
Tomas’ Story of Hope
I just want to briefly tell you about my son Archie, He is four years old.
We have been with Jean since July last year and I really do trust her. I feel she is very thorough and you know that she has given her daughter all the support that she advises us to give to our children. She has lived through it and her daughter is now doing great.
Archie has also had terrible gut bug and parasite problems. We did our first clear out August last year, at the beginning of the programme. This was a wow support for us. At that stage Archie could only use one word to ask for anything, he didn’t have many of those and what he could say wasn’t that clear for other people to understand. Well, that week we did the clear out and it really was amazing, He went from one word in a sentence to putting 3 and 4 words together, literally overnight. He was also on the oregano drops for a couple of months and yes we did experience bad die off with this, but that was how I knew that it was working and he really did have these parasites and bugs, because those die off symptoms were a result of parasites being killed off. I think it would be more worrying if he didn’t experience this as we would wonder why it wasn’t working.
There have been ups and downs along the way so far, and Archie does experience more tantrums than before, BUT the progress he has made has been absolutely amazing, he doesn’t stop talking, words are becoming clearer and clearer each month, he answers questions with a yes or no, rather than just repeating the words back to me, he can tell me about his day, what he did at his ABA/VB nursery, in broken sentences, he is initiating play with his twin sister Ruby, his imagination is great, playing on his bike pretending to go to petrol station, shops , school, whatever comes into his head. Plays with dolls and characters, has them talking to each other, sleeps through the night now without waking up with a blood curdling scream!!!! The improvements are endless, also none of this has been taught through VB therapy, its all things that he is learning naturally like a typical child would. So much so that he is going to lose his place at the VB nursery as they cant justify his place there anymore, he will be starting mainstream in September with support.
Archie has gone from a boy, who was severe, would self harm, head bang etc, scream all the time, never sleep, we were housebound as he couldn’t cope with the outside world, different environments and people. Couldn’t even travel in the car. Now we get comments all the time, what a changed boy he is and we now have a much happier family life, so the benefits for us defiantly out way the negatives.
If we had listened to sceptics and our paediatrician Archie would probably be in restbite care now and I would have had a breakdown. They told me there was nothing I could do for my son, but to manage his behaviour. We now have a boy who has come back to us, has a cheeky personality, loves life and is mostly happy, content and is free of pain.
Put your trust in Jean, her dedication is amazing, which you don’t tend to get as much from other DAN doctors.
Also I normally say to sceptics that say there isn’t enough research into all of this, I haven’t got time to wait 10 or 15 years down the line for it all to be proved, as it will be to late then. I don’t need to wait for this, I have my own son as proof. As parents, we are not stupid, we are not clasping at straws, as some believe, and we are the only ones that are able to make a better life for our children.
The caudwell trust have just awarded us with funds to help towards financing this support for the next two years, now a charity wouldn’t be giving out thousands of pounds for support that was wasn’t really working!!!
I’m posting this as a possible encouragement to people, and dont want any praise or anything.
We still have a major problem with very little speech so still in big trouble with Sophie and her autism issues. However nearly all our other issues have disappeared now. The big surprise for me was her latest ATEC score.
When we started Sophie had an ATEC of 123 (aged 3.5) After 6 months interventions she scored 78. Now after nearly 2 years she scores 28. I am confident she will recover – we need more time and more hard work.
The things that are now very good or perfect and were a disaster before include:
- Sleeping through the night fine now (used to jump all night).
- Eats a nice range of foods and drinks (was at 4 years old still on 0-4 months
- Eye contact and emotional contact 100% now (was zero).
- Repetitive behaviour and sensory issues – now none (used to be massive).
- Playing with other children and trying activities – will do everything and anything now with anyone – perfect (used to not even get out of our arms).
- Imaginative play – she will play pretty well with everything now (used to be fixated on one thing).
- Walking – walks and runs everywhere now (we were almost resigned she would be in a wheelchair all life).
- Stools and eating fine now (she had months of diarrhoea before and used to be vomiting all the time).
Plenty more but there’s a few of the improvements.
Just to say to anyone starting off, persevere and you will improve your child massively too.
Hi everyone. I feel that I am one of the new ones on here and I regularly read all your amazing stories so I thought I would give you a little update on Luke. Especially for all you out there who have not been with Jean quite as long as us.
We have been with Jean now since May 2009 and if someone would have told me what the difference in Luke would be from then to now I really would not have believed them. Luke was a very violent, non speaking, had little concentration and was an uncoperate monster. He was extremely demanding with no rewards.
Jean then started her magic. As a parent was it hard work, oh my yes. I thought that I would never get my head round what nutrients had to be taken
when. I store all his nutrients in one kitchen cupboard and made a laugh about calling it my pharmacy!! Over time I did get my head round it all (Well I think I have) and Luke now takes it mixed in fruit puree. I won’t say fine as some make him gag but bless him he does take it. We tell him that it is making his
Then in Summer this year, Jean mentioned those dreaded words MB12. My instant thought was oh no I can’t do that, but the progress that Luke had made so far was amazing so I put my trust in Jean and we went for it. What a performance. I think I wasted about 5 injections as I just could not do it, but I perservered and just kept thinking that if Luke was a diobetic I would have to do it. Eventually after about 6 weeks I am happy to say that I have mastered it. Luke feels nothing as we use numbing cream and I don’t have the shakes any more when doing it.
So how has Luke improved…… well he is no longer violent, he is talking. Not converstional but lots and lots of words are coming now all the time. His concentration is amazing. He will now play games and take it in turns. All I can say is we still have a long way to go, but thanks Jean for pushing me. You really have changed our lives.
It was good to talk to you on Friday at our ‘phone consult especially as we had had such a good week with Adam to report. It made us realise how far Adam has come in the 2 years that he has been under your care. We thought we would share Adam’s progress with other parents as we always find it encouraging when we hear other parents’ reports on their children. Adam has just turned 15 so he was quite old to be starting bio-med, however he has been making excellent gains.
For the first time he has taken an interest in halloween. Until now he would not entertain ‘trick or treating’ or dressing up yet last Sunday night, without any prompting, he dressed himself up in a black cloak, witch’s hat and skeleton gloves and went off trick or treating around the estate – he really enjoyed it even tho’ he couldn’t eat the sweets he was given. At school, they had a halloween disco. Previous years Adam has sat in the car refusing to go. This year he couldn’t wait to get there and join in the dancing. Adam has always been terrified of fireworks yet this year he asked for some to let off in the garden.
With regards sport, Adam has never been very interested. If you threw or kicked a ball directly to him then he would catch it or kick it. Now he asks to play football, dribbles and tackles (I have the bruised ankles to prove it)and keeps up to date with his favourite team. This year he has learned to go-kart and goes skiing once a month. Other areas where we have seen gains – his memory is much better. He tells us what he has been doing during the week at school which he could never remember before, his cognition is much improved, he understands far more what is going on around him and his speech is much better – clearer and far more of it. He is a lot calmer with only rare outbursts of anger or aggression plays much better with his younger brother. He likes to tease and is generally a very happy young man.
This is all thanks to bio-med and you Jean. We will continue along this path and I’m confident we will continue to see Adam’s quality of life improve. Adam still has a lot of issues,and we still have a long way to go but I’m confident Adam will achieve more as we continue down the bio-med path. A million thanks Jean
Best wishes, Hilary