My son Essa was about three-and-a-half years old when we started noticing strange behaviour followed by regression of speech. Essa had normal speech and now he has none.

He is now ten years old. Unfortunately in our part of the world (Pakistan) we have absolutely no therapy centres for autistic children and professional help is not available for such kids. Secretin is something I’ve been reading about on the net, though it’s impossible for us to get it over here. I've heard of homeopathic secretin, what exactly is it? Essa is also taking respiradol, 0.5mg which is a very low dose, sodium valporate and benadryl syrup (somehow it has always helped). I am now thinking of putting him on Diflucan which is an anti-fungal drug. I have heard that Dr Goldberg is prescribing it and children have really benefited. Essa has been twice to America and was once diagnosed as having an LK syndrome which the tests proved negative.

Any information that anyone could provide would be appreciated.

Nari Salman, Pakistan

My son is now five-and-a-half. He has had a lot of ear infections, antibiotics and the ill-fated MMR injection. He then got measles, was really quite sick and then never the same child again. All in a matter of three weeks.

We have tried Secrepan, a form of secretin, which I managed to get from Japan. We are about to also try Gaspretin, another form of secretin. Elliott is on an ABA programme run by CARD - Centre for Autistic Related Disorders. This is in LA and has an office here in New Zealand. All of this of course costs a lot of money, but you do what you can! Elliott has come a long way but we have further to go, he is just starting to string two words together and is using the PECS system to put symbols together to ask for food and drink.

I have just got involved with starting here the first Transition Classroom for seven children (all with autism). The idea being slowly to move them into a mainstream classroom if and when they are able. And vice versa moving the typical kids into their room for short periods of time to try and get our kids used to the routines etc. Autism is not known or recognised widely here in NZ. We as parents have huge struggles to get anything for our kids.

Wendy Duff, New Zealand.

I have a condition called Coeliac Disease which means that I have to have a gluten free diet. I suffer many similar symptoms to some children on the autistic spectrum having a bloated stomach and being unable to digest my food since I was about 18 months. This made my development very slow.

I just wanted to say that the gluten free diet that I am on is very good and enables me to eat a diverse range of foods. It may help if people contact the Coeliac Society, PO Box 220 High Wycombe, Bucks. HP11 2HY. They produce a booklet showing all the foods that are gluten free. I also use wheat flour, which has had the gluten extracted from it, this enables me to cook bread and cakes which are very similar to the real thing, if not better. You can also order your gluten free bread and biscuits on prescription, but I’m sure the Coeliac Society will tell you about this.

Graham Hewitt.

Following the mass of publicity relating to the possible effects of the MMR vaccine and the onset of autism, I would like to know why the Government still insists on the use of it and why they still believe it is safe amidst the wake of such confusion.

If this is the case then why does it only affect certain children and not others? Are some born with inherited weaknesses that may contribute to the onset of autism following the jab and if so, what weaknesses are they and why don’t the doctors of this world look more closely at these weaknesses before administering the injection? I know for a fact that the MMR certainly tipped my lovely son over the edge and if this is the case then more and more parents should be aware of the risk factors associated with immunisation and antibiotic use and the possible links it has with the long-term-effects derived from them.

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Is it just me or do people say the most hurtful things. I was out with a very good friend recently, she was telling me how devastated her family were that her brother couldn’t have children. I was nodding in agreement, genuinely thinking how horrific that must be. Only to find a hand on my shoulder and my friend saying. ‘You mustn't worry about such things, what you have is far worse’ I don’t know about anyone else, but I would rather have my fab kids, autistic or not, than never to have experienced all that I have with them.

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My name is Mrs. Fay Hawkins and I have a daughter Lauren who is three years and three months old. She was diagnosed at Guys Hospital in London at the age of two as being severely autistic with a significant learning disorder.

Looking back now she was showing signs of being autistic from the age of six weeks. She is non-verbal except for the babbling she does and it is very hard to do any structured work with her. When we originally found out Lauren was autistic, we looked at all the different options available to us at that time but found that financially we would have problems, so Lauren carried on attending a special needs centre in Bracknell, Berkshire. Recently through a close friend we heard of Dr Michael Goldberg who looks into the issues of why these children are displaying autistic features in the first place? What could be causing these children to have such problems? He is one of the only doctors I have heard of who is trying to address the medical issues regarding these children. He is looking for viruses, which may be present in the body. If a child has a weak immune system, the virus can take over the body, and although the child is trying to fight off the virus, the virus is winning.

The combination of the two, causes decreased blood flow to the brain. We flew out to America in July of this year. We knew that if Lauren’s results had come back normal we would have to accept that the origin of Lauren’s autism would be genetic. We had a special MRI scan of which there are only two of in the world. It shows you a coloured image of the brain and the amount of blood that is flowing around each area. Lauren’s results came back as showing decreased blood flow in the paracentral lobule and the right of the hippocampus region. These are the front temporal lobes of the brain and are responsible for social interaction, speech and communication which are areas that Lauren has great difficulties with.

Lauren also had a huge variety of blood tests, which gave some amazing results. In basic terms it showed that Lauren’s natural killer cells were very low which shows there is a problem with her immune system, she also came up as having the HHV6 Human Herpes Virus. Lauren was over 250 times the acceptable limit. Speaking to Dr Goldberg on the phone about Lauren’s results he said it was literally one of the highest results he has seen.

She also showed up to being allergic to dairy products, apples and fish. Since seeing Dr Goldberg she has been taken off dairy, wholegrain, whole-wheat, has limited sugar and no chocolate. Lauren is taking anti-virals at the moment to attack the virus. In the first two weeks of taking the anti virals she was more alert and interested in what was going on around her and also her concentration is better. She has also been quite miserable, which we were warned would be a good sign because it shows that the virus is being kicked up. Lauren has been on anti-virals for a month but she has now been changed to a different anti-viral to see if this can improve the effects. Dr Goldberg is also thinking of introducing an SSRI like Prozac or Paxal in a low dose to help increase the blood flow once he has suppressed the virus.

He has high hopes for Lauren. He is not saying that he has a cure but he has helped all his patients to varying degrees. He knows that Lauren will be a challenge but he expects to win this battle.

It is so difficult to know whether or not what we are doing is right for Lauren, but if we do not explore these different avenues of possibilities then we will never know. If you would like to know anything more about what we have done please e-mail us at fayhawkins@hotmail.com.

Fay Hawkins

I have read extensively into the possible causes of autism and it appears that there is no ONE factor that contributes to its appearance but a number of opinions that come to light such as vaccines, antibiotics, food allergies, suppressed immune dysfunction or over activated immune system responses, leaky gut syndrome and suppressed secretin and enzyme release. If this is the case then why aren’t these children screened for these possible weaknesses so we, the parents, can see for ourselves what is actually happening within our child? I would appreciate a list of relevant tests being published and where to have blood serum, urine and stool samples sent for diagnostic testing and at what cost? Thank you so much.

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As a parent of two autistic children and a child with learning difficulties, I have spent many long hours researching autism and its cause. I have a 12-year-old autistic son, an 11-year-old son with learning difficulties and a 4-year-old daughter diagnosed as severe non-verbal autistic.

There has been a 200% increase of autism in the UK. in the last decade. There has to be a reason for this. Like many parents involved with this sudden increase, I know my children were not born with autism. So what is the cause? What is it that we are not being told? We have all read the concerns over triple vaccines, and these concerns are justified!

It concerns me a great deal that so many children are suffering brain damage through vaccines, both DTP and MMR, especially DTP - a vaccine all our children are given. The fact is that these children are being diagnosed as ‘autistic’, a name given to us. Why? Is it to make us feel better? Lets face it, we have all heard the stories that autism is genetic,or its the parents fault, everybody else’s fault, except vaccines. There are questions that we need answers to, the most worrying is the fact that the Government has a ‘Vaccine Damage Unit’. This unit is paying off the parents of those children, who are diagnosed as autistic with a single one-off payment of £30,000. A disclaimer is signed. WHY?

I believe we are experiencing the biggest cover-up since the Thalidomide scandal. People then campaigned until they got the truth, something we must do now. I also have concerns over the exploitation we are now seeing, especially with secretin. My concerns are that many people are seeing this as the miracle cure. It may work in the short term, although I don’t believe it is a cure. Many families are no doubt taking this route, but what happens when they can no longer afford this very expensive treatment? Will the child go back to square one or be worse? If these doctors really wanted to help, they too would seek answers to the major increase in so called ‘autism’ and the effects of vaccines. The truth is they get paid for every vaccine they dish out. They are supposed to warn you of the effects vaccines could have, but do they?

I am an angry parent, very, very angry! No amount of money can give my kids back the normal life they once enjoyed. All I want is for people to stand up and say enough is enough, because until these triple vaccines are stopped, autism will continue to increase. We have all seen our children’s lives slowly slipping away from both themselves and us. I will not rest until the truth is known, it is the very least we deserve.

Garry Maher

My name is Nick Willoughby and I am 18 years old. I live with my parents, brother and sister on a farm near Reading. My brother is 23 years old and is autistic, he is also brain damaged. The brain damage was caused by a loss of oxygen to his brain at birth. This was over-looked and my parents were told that everything was normal.

As the months went by my mother noticed something was not right so she took him to the hospital and she was told that she was worrying too much.

After nine months she took him again and they finally did tests and he was then diagnosed as brain damaged and later found also to be autistic. My parents were told that Michael was going to be a vegetable and was not going to be able to do anything. But they were proven wrong.

Michael now boards at Ravenswood Village which is in Crowthorne. He is 6’4” in height and is built like a Rugby player. He is one big softy. He comes home at weekends and he checks that everything is normal and can’t wait to go back to school again, which is good.

Michael cannot speak, until now his only way of communicating is by pointing to things and by showing people what he wants. He gets very frustrated when he can’t explain how he feels or he can’t tell us what he wants. When he gets frustrated he gets angry and takes his anger out on himself by hitting things with his head. He has put his head through many windows and broken many televisions. It is understandable, as it must be very difficult to not be able to tell people how you feel and to express your feelings to people.

Recently my mum has noticed that Michael has been looking at labels on bottles and cartons. My mum told the school about this and they picked up on this. They found that Michael was reading the labels and he had been able to read for a long time. This led to him being able to spell too. Now Michael uses Facilitated Communication to communicate with his school and us. Facilitated communication is a form of communication that allows Michael to spell words onto a keyboard with the aid of a carer. He is able to tell us how he feels and what he wants. He does crosswords and enters quiz competitions with his carers and sometimes he knows the answers to the questions that the carers don’t know. It has taken two years to get to this stage. Michael must have been picking up words over the years without us realising. This has been a great surprise to the family.

Ever since I was very little I have always shared the responsibility for Michael. Michael was like a little brother, but just a few feet taller than me. My sister and I have both grown up to accept the way Michael is and his problems have become a part of our lives. We have also grown up to understand autism and what effect it has on Michael.

Michael is very lucky to be at the school he is at all. It is a very caring school and caters for Michaels needs. The awareness of autism needs to be raised as it will help the families and the autistic people too. It is important that us, the younger generation, learn to accept autism as this will also help them in today’s society.

Nick Willoughby

PLEASE BE POSITIVE

I recently went to a support group, to meet some other parents in simular situations to myself. I went feeling quite excited about all I was doing with my boy, aged two-and-a-half who is on the autistic spectrum. I left feeling upset and despondent.

I was telling a few parents a few treatments and therapies that I had tried with some success, only to be told by one and a nodding other, that it was all a waste of time, they had been down that road and everything I was hoping for would never work. Nobody shared my happiness at my limited success, in fact nobody really said anything positive all evening. What is the matter with people? It’s a sad world when we can’t help each other, and try and be happy for someone who is seeing an improvement in their autistic child. Come on, parents let’s stick together and help each other.

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We have a child on the autistic spectrum, we have joined every organisation, read just about every website, found out about every treatment. My question to everyone is why, oh why, does everything cost so much?

Every treatment costs thousands, every doctor the same. (I don’t know about you but they seem to all contradict each other). What is it that’s going on? We have to put up with patronising comments, and some of these have come from so called ‘help’ organisations for autism, one lady I spoke to the other day from an organisation that was supposed to be informative was downright aggressive and actually had me in tears at the end. My goodness, we shouldn’t have to put up with this. She said that all I was doing with my child’s diet was wrong and that basically I was going down the wrong path.

Well, someone tell me a right path that I can afford and I will take it. I am just a parent with a child that is autistic and there is not a thing I can do about it.

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My son is nearly four, and has been having test after test by the health visitor, doctor, education officer, consultants, you name it, he’s been there.

The funny thing is that every time we go for one of these ‘tests’ (‘To see how he’s coming on’) he has to do the same test. I actually laugh now because he must have been asked 20 times now to pick up ‘hundreds of thousands’, feed dolly, brush dolly’s hair, stack bricks, etc etc ...

What these fools don’t realise is that my boy can do these with out looking. I spent days after the first ‘test’ running through the things we had to do and to my amazement we have been trooping from place to place doing the same test over and over again. So wake up you so called medical professionals and catch my son out, because he sure as hell can’t do anything else.

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We have recently had an out of the blue diagnosis of autism for our beloved son. Our precious son, was, and still is everything to us. We cry day and night, we can't speak to people with out breaking down, we can’t look at other children without being bitter, everything anyone says hurts and is wrong. But, most of all, the pain, the deep pain that we both feel, won't go away. We feel so desperately sad and empty.

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