On the 27th July 1998, our son Alex was born. A little brother for Stephanie who was just approaching 3 years old. A perfect little baby, a perfect family: life felt great!

Alex was one of those babies that did everything early: he smiled at 4 ½ weeks, sat up at 6 months, crawled and cruised round furniture at 8 months, and said his first word 'Mama'! By 11 months he was walking around and getting into everything. 'Distract him Mummy' was the regular cry from Stephanie as Alex 'helped' with her jigsaws, colouring and tried to put on her beloved princess dresses!

The only slight concern we had during this first year was when Alex developed mild eczema. We have allergies both sides of the family, so put it down to genetics!

Alex enjoyed his second Christmas when he was 17 months old. And had a favourite first cuddly, Hogwig the frog.

Alex was fully vaccinated up to this stage. He did react to his very first injection at 8 weeks old: he was inconsolable, he screamed until he fell asleep and his leg went bright red around the site of the injection. When we spoke to the Doctors, we were told that this was a mild reaction, not to worry and give him Calpol before his next injections. We kept up to date with all the injections as we thought we were doing the best for him. He did have the MMR but we didn't notice any particular reactions afterwards.

He was a happy, inquisitive, very normal little toddler. I've been looking back through the photo albums and there are big beaming smiles in nearly all the photos. Unfortunately, this all was about to change.

By 22 months when we went on holiday in France, Alex had gone. It's so clear now as I look though the photo albums with tears in my eyes, but sadly we didn't notice anything was wrong at the time. It seems so unbelievable, looking back with inevitable guilt, but our son drifted away and we didn't realise for another year.

He stopped smiling, all the photos have that 'impassive' face, or worse still, a clearly sad face. He stopped getting excited when Daddy came home. He stopped wanting to play Stephanie's games. He stopped gaining new words. He stopped responding to his name. He spent hours outside in the garden putting sand into buckets and tripping it out again. He was very co-ordinated and would ride his tricycle at great speed round the patio and perform fantastic seat drops on our trampoline. He is a typical boy everyone said, don't compare him with his sister, boys are different. He will talk in his own time.

At the supermarket he would run off and not respond when I called out for him. I would race around the shop trying to find him; he was totally unconcerned, I was a nervous wreck! If I tried to keep him in the trolley he would scream and I'd get those 'Can't you control your child' looks from other shoppers. He found things like hair cuts incredibly stressful, anything out of the normal routine.

At 2 years 10 months he started pre-school, after a very difficult time toilet training him (at that stage, children had to be dry to attend the pre-school). He cried inconsolably if he saw me leave and would start up again as soon as he saw the first Mum arrive back. He had very few words at this stage and very little receptive language either. He basically did his own thing at pre-school, spending the vast majority of the time in the sand and water. Filling and tipping over and over again.

During his second year he developed asthma and had a number of doses of oral steroids. He was given a steroid inhaler to try and prevent future attacks. The asthma was viral triggered and unfortunately, Alex seemed to suffer from a high number of coughs and colds. Any bugs going round, he would catch.

By his third birthday, I was getting very concerned. I read a book on child development and the word 'autism' leapt out at me. But Alex was cuddly; he was nothing like 'Rainman'. I rang up my health visitor and told her that I had concerns about Alex's development. She referred me to a Speech and Language Therapist, but the first available appointment was 2 months away.

I needed an answer sooner and arranged to go privately. The subsequent report brought temporary relief. She didn't think Alex had autism; we had to let him develop in his own time. Thanks goodness, I thought, I am just being a paranoid Mum!

Unfortunately, a couple of months later, the staff at Pre-school called me in to express concerns about the way Alex had settled in. I sat in to watch a session and it was clear that Alex was very different from all the other children. We started the battle to get a diagnosis.

At this time, Alex was a sick child, his eczema had become severe and we were being given stronger steroid creams to keep it under control. Steroid creams, steroid inhalers, oral steroids, they couldn't be good in the long term for Alex -- and they were all tackling symptoms, not the root cause. We had had enough; we went to get advice from a Doctor of Integrated Medicine. He checked Alex for food intolerances. The recommendation was a shock: no dairy, no gluten, no sugar, no tomatoes, no chocolate. That was virtually all Alex ate. How would I feed him? He also gave us a vitamin and mineral supplement, fatty acids and probiotics.

My life of reading labels had begun! A friend loaned me a book by Lisa Lewis on implementing the dairy and gluten free diet and how it helped children with autism. It took 4 months for Alex's eczema to clear up, but within a few days of implementing the diet, he said a short sentence. Our journey had begun before we even got the autism diagnosis. A real stoke of luck.

Whilst buying my own copy of the Lisa Lewis book from Amazon, I spotted another 'recommendation', "Facing Autism" by Lynn Hamilton. What a great find, a beginners guide to biomed, education and sensory integration all in one book. We decided to find our more about an intensive educational intervention called ABA (applied behaviour analysis).

The wait for an NHS diagnosis became intolerable, it would be seven months from referral to appointment we were told. We again went privately, although fortunately, our healthcare scheme covered the costs. We spend a full day with a Developmental Paediatric Consultant and in the afternoon an Educational Physiologist joined us. The actual diagnosis of autism was a relief. We knew Alex had autism but we couldn't access any treatments without the label.

A week later we were at PEACH having an introduction to ABA. Three months later we started our ABA programme through PEACH.

Alex thrived on ABA. For the first time since his regression, we were able to teach him effectively. The first week our programme was 'Come Here'. Alex had to come to a table when we asked and then we had as much fun as possible with reinforcing toys like balloons, bubbles and wind up toys, plus singing and tickling games. We later learned that this is a technique from a branch of ABA called Verbal Behaviour. The idea was that Alex could only access the special toys through his tutors; the toys were fun and therefore through association the tutor became fun too.

It was a turning point, and Alex quickly progressed through many programmes from areas such as language, self-help skills, pre-academic skills and play skills. One of the early programmes was to teach Alex to say 'yes' and 'no'. At 4 years old if you asked him did he want a drink, he would echo back 'want a drink' for yes, or walk away for no! He mastered yes and no in one weekend of ABA! We employed a team of tutors to work with Alex 6 hours a day, 6 days a week. I was the lead tutor.

The ABA programme lasted for 2 years and during this time, Alex integrated slowly into mainstream school. After the first few months, Alex was statemented to receive the ABA programme, and the LEA provided full funding.

Like many parents starting ABA I read the book 'Let Me Hear Your Voice' by Catherine Maurice. Her two children recovered from autism through ABA and I was sure we could achieve the same with Alex. Whilst the ABA was very successful, it was clear as we progressed through the programme that Alex still had some major issues. I revisited the biomed area and bought a book that became my bible 'Children with Starving Brains' by Jaquelyn McCandless.

"Children with Starving Brains" explains the DAN! (Defeat Autism Now!) protocol for treating children with autism. It describes how you can test to establish the child's medical issues. It also discusses major treatment plans such as gut healing, supplementation and chelation. For the first time I read about mercury poisoning -- the more I read the more I became convinced that mercury poisoning is a major contributing factor in the autism epidemic.

We visited a DAN! Doctor in the UK, and through testing, managed to normalise Alex's levels of key vitamins, minerals and Fatty acids. He started to become more sociable! For example, when we added Brainchild Zinc to his protocol, his helper at school rushed out to tell me what a fantastic day he had had, playing in the playground spontaneously with the other children.

During the ABA programme we tackled Alex's auditory processing delay and auditory discrimination issues with an intensive computer based programme called Fast Forward. Alex could not process verbal information in real time, if you asked for three things e.g. cat, mouse, horse from a section on the table, he could only remember two. He just couldn't process complex sentences at all. After Fast Forward, Alex's receptive and expressive language increased dramatically. He started being able to sit through full length films for example, whereas previously, he could only cope with short cartoons like Thomas and Pingu. Being able to go to the cinema as a family was great and Alex was up on all the 'in' subjects like Star Wars.

We finished our ABA programme after 2 years and Alex has been full time at mainstream school since then. He has a learning support assistant to ensure he can access the full school curriculum. Without this support he would not be able to progress as effectively in mainstream school.

After the ABA programme ended, we decided that we wanted to understand chelation therapy better. A new protocol had just become available in the US called TD-DMPS. At this stage no doctors in the UK were prescribing DMPS. In a rash moment, I checked with US buddies about the top DAN! Doctors over in the US. Dr Usman's name was mentioned by many. I rang up and booked an appointment. A month later, Alex and I flew to Chicago.

It was a great decision for us. We came back with MB12 injections, Lipo Glutathione, TMG and td-DMPS . We introduced them all in a very slow and controlled way. After a few months of the treatment, Alex started to show steady signs of improvement: his concentration levels improved, his language become ever more complex. He entered the 'why?' phase in a big way. We started to have great conversations, one morning he told me all about a bad dream he had had. His imaginary play continued to blossom.

We started a new educational programme called RDI (Relationship Development Intervention) which focuses on emotional referencing, social coordination, declarative language, flexible thinking, relational information processing and fore sight and hindsight. Alex had some of these skills already but they weren't 100% consistent. RDI proved to be our most costly mistake during our years of tackling autism: the programme was not right for Alex or for us as a family. As there were no UK RDI Consultants at this stage, Alex was assessed by a Consultant in the US and put on stage 0 of the programme. He was required to do some very repetitive things and he understandably got bored with them. Our relationship suffered as Alex would ask suspiciously what 'games' we wanted to play with him and tell us verbally and non-verbally that he wanted to play more spontaneous games. For the first time since starting ABA Alex wouldn't 'play' on our terms; and to be honest we didn't blame him, our daughter would have been equally reluctant to do the tasks expected of Alex. After much soul searching we stopped the RDI after 6 months. It was a big relief.

With the value of hindsight, RDI was the wrong programme for Alex at his stage of development: he already had good strengths in social skills, he could play well with other children, he could co-regulate at an appropriate level. He wanted to play spontaneous games, not repetitive tasks. I also think that RDI was still in a development stage and not as well established as some of the other autism programmes. I know RDI has been very successful with other families and there are now UK Consultants. I guess it's a lesson that you need to be absolutely sure that a programme is right for your child and not get swept away with reports of great progress for other children.

After RDI in 2005, we sat back and thought long and hard about Alex's strengths and weaknesses. He was a happy, sociable, inquisitive boy again. He had a best friend and was popular at school. His language was pretty good but not yet age appropriate. He still had sensory issues, particularly with auditory processing and vision. These were impacting on his academic work and he struggled especially with reading and writing. We decided to focus on the sensory issues as these were holding back his academic progress, and he needed to improve significantly if he was to make the transition to mainstream secondary school.

We had an assessment with a development specialist who tested for retained primitive reflexes -- he had many including a strongly retained asymmetric tonic neck reflex. This affects vision tracking and fine motor skills. We started a programme of brushing and this certainly helped the academics, but reading was still proving very difficult for Alex. I read a book by Melvin Kaplan, a US optometrist, called 'Seeing through New Eyes'. It is an amazing book and helps to explain how vision issues can impact many different areas, not just the obvious things like reading. I found an optometrist in Dorset who used the similar prism lenses to Kaplan, and booked an assessment for both Alex and Stephanie -- Stephanie had always been a very slow reader.

The reports were dramatic: both children had major vision issues. Stephanie had virtually no detail in her peripheral vision which explained her slow reading -- she could only see clearly in an area 2cm diameter. Her eye tracking was immature and she had a mismatch between where she thought things were and where they actually were. She also had retained primitive reflexes. Alex had slightly better eye tracking but no peripheral vision at all! When he stood about 3 metres away from me and looked at my nose, the furthest down he could see without moving his eyes was my chin. No wonder children with autism struggle to see the 'big' picture and are good at focussing in on detail. That is literally all many of them will see. There is a good description in the Kaplan book by an adult with Aspergers. He said when he looked at a car he would see a small part like a handle, he could then work out that he was looking at a car. After vision therapy he said how beautiful the world was now he could see it fully.

We booked both children in for two weeks of intensive vision therapy in the summer holiday's 2006. Both showed major improvements after the therapy. Stephanie's vision had opened up significantly and her vision was 'normal' at the three month check up. She now loves reading books and her work at school has improved. Alex's peripheral vision has widened a lot, but is still not as good as it should be. He now wears prism lenses for reading and writing and these are helping him to progress at school. He is now back on the standard reading scheme and is reading much more fluently and for longer periods. Interestingly, he is much better at football, I guess he can see where people are on the pitch! He has also become a very good tennis player and recently had a rally of over 100 with the club coach.

After the success of vision therapy, we progressed onto auditory therapy in 2007. Again we had both children assessed and they had remarkably similar profiles. Both were left ear dominant, and they should be right ear dominant. Both had poor hearing in the upper frequency ranges. This can lead to poor auditory discrimination and therefore more day-dreaming in class. We had spent about a year following the Johansen Sound Therapy programme which involves listening to music through headphones for 10 minutes each day. Alex's hearing is now normal! Stephanie is slightly behind in the programme but is progressing well.

After a two year gap, Alex recently had a Speech and Language assessment which showed that he is not age appropriate with receptive language, particularly complex instruction sets. This obviously has implications in lessons. However his expressive language is more age appropriate. He is particularly skilled at insulting his sister. Last week we walked down the road to a Christmas Party and Alex announced 'It must be Halloween.' We pointed out it was Christmas and he followed up with the killer punch 'Then why can I see an evil witch ahead?' Stephanie was not pleased but Simon and I had a good laugh! Today we were watching the TV news and Alex asked why people were bombing Gaza. I tried to explain and he said, 'we can live in peace, why can't they?' A good question Alex and I didn't have an easy answer.

In terms of biomedical, we have progressed relatively steadily introducing the occasional new supplement like vitamins K and D. Vitamin K seems to have helped his teeth which had poor enamel. He remains on a strict gluten free diet as he has celiac disease. In the summer we stopped doing chelation and the break seems to be good for Alex. He is particularly perky at the moment!

The focus now is on trying to catch Alex up academically. He is relatively strong at maths, but his English is significantly behind. We have recruited an English teacher to tutor him. She is using a programme called Thrass which is used to teach reading and spelling skills. She is also teaching him the rules of sentence building and she is confident she can get him to NC level 4 by next year. She is an amazing teacher and I hope she can do it!

During 2006, I decided to return to work and spent a year doing my teacher training -- useful for making contacts with good potential tutors! I am now a fully qualified Science teacher working in a local independent school. Being in the school system makes you very aware of the skills children need to succeed at secondary level. We are hopeful that Alex can progress sufficiently during years 5 & 6 to enable him to access mainstream secondary education.

One of my goals on entering the teaching profession was to set up a unit in a mainstream secondary school for children like Alex. I would like the children to benefit from a range of programmes such as vision and auditory therapy, Speech and Language Therapy and social skills training in addition to the standard curriculum. As a parent, I feel I have a lot of knowledge of autism treatments that would be of benefit to other children. Wish me luck!

As we look back at the end of 2008, it has been another good year of progress. Alex continues to be a happy and sociable boy. He has a number of really good close friends and will play with them for hours with no intervention from us at all. (It's quite unbelievable to think that we had to teach him those initial play skills with ABA.) His language is becoming increasing complex and he has a very normal love/hate relationship with his sister. In many ways Alex is indistinguishable from 'normal' kids his age, he enjoys playing football with his mates, he came runner-up in the under 12 tennis competition at our sports club (not bad for a 10 year old!), he is about to take his grade 1 piano exam. He enjoys playing on his DS and Wii, but equally will spend hours building lego star wars ships or playing Monopoly or cards. We can do all the things that 'normal' families do, although all those extra hours required to run effective programmes have become part of our way of life. However, as secondary school approaches fast, we need boost the academics. He also has residual sensory issues and deficits in his receptive language skills.

When I first wrote up Alex's story at the end of 2005, I said we were approaching the 20 mile point of our autism marathon. Three years later, we have probably progressed another mile or two but those last few miles are really tough. All his peers are progressing fast and we need to move Alex along even quicker so he can close the gap. It's been quite a journey and we have rejoiced at all the small steps along the way. Occasionally, we look back and see how far Alex has actually travelled, the rest of the time we feel the usual mixture of tiredness and guilt that we could and should be doing more. I think all parents of special needs kids feel the same!

What have we learned along the way?

• Get a good team of professionals to help you eg Doctor, SLT, School, educational consultants, but remember that only the parents can manage the complete treatment programme.

• Using educational, sensory integration and biomedical treatments together can bring the best results.

• What works for one child doesn't necessarily work for another -- don't rush off to get every miraculous new treatment.

• Regularly evaluate what you child's needs are and address them methodically -- they will change.

• Don't try to be 'Super-Parents' all the time, do what is achievable.

• Finally, set small goals and celebrate when you meet them -- enjoy the journey!

Alex's Mum: Tina

Jan 09

As I sit down to write an update to Alex's story, I wonder how the year has flown by so quickly! But it's been a good year, so much has happened and the future seems brighter than ever.

The focus over the last twelve months has been on academics and Alex's transfer to secondary school (September 2010). Finding the right secondary school for any child is a key decision; for our children, the decision is even more critical. Fortunately, we have a number of excellent schools with ASD provision within 30 minutes travelling distance and we went for tours so that we could specify our parental choice in Alex's year 5 Annual Review.

The local mainstream with an ASD unit, was impressive, but only had two places available in the unit per year - generally filled by students more severely affected by ASD than Alex (in terms of needing routines, visual timetables etc). Also, we knew that Alex still needed support for Speech and Language and therefore he would require one to one to ensure he could access the academic curriculum - this would be detrimental to his independence and make him more isolated from his peers.

The MLD school has an amazing reputation, and I know from the week I spent there during my teacher training, that the positive attitude prevalent throughout the school ensures that the students progress well. The downside is that the range of GCSE subjects on offer is limited.

Finally we read about More House School in Surrey. This is an independent school for boys with normal range IQ, but with a range of learning issues like speech and language disorders, dyslexia, dyspraxia and ASD. With a full range of GCSEs and A' levels on offer plus individual SALT, OT and literacy programmes fully integrated into the curriculum, it seemed like a perfect solution for Alex. When we had our tour, we both knew it was the 'right' school for Alex. Small class sizes, lessons delivered so that they were accessible, and up to four hours of individual SLT, OT and literacy tuition each week. More importantly, the boys there were so similar to Alex, we knew he would integrate socially. He went for an assessment day and loved it. Luckily, he was offered a place.

We started the process of negotiating secondary transfer with the LEA. To cut a long story short, we have finally agreed an amended statement this week. Alex has been statemented to More House from September 2010 and we are confident he will get the level of support he needs to succeed both academically and socially. We are thankful that an SEN tribunal has been avoided and we managed to negotiate with the LEA in an amicable way. Whilst getting appropriate support for our kids often feels like a battle, we understand that the LEAs are not adequately funded and therefore have the unenviable task of making limited budgets spread across too many children with special needs.

Whilst the secondary transfer seems to have dominated the year, there has been a lot else going on. In July 09, Alex passed his grade 1 piano exam with merit and he is currently working on his grade 2.

In August 09 we did another week of vision therapy down in Wareham. This had virtually instant results and Alex is now finding reading much easier. It is amazing to look back at how restricted his vision used to be - pre therapy he had only 4 degree peripheral vision (virtually tunnel vision), post therapy it had increased to 50 degrees. Pre therapy he had poor eye tracking and fusional reserves, post therapy both were normal. His range of clear, near focus increased from 6 cm to 48 cm.

A literacy tutor works with Alex every Saturday and they have moved on to writing techniques like persuasive writing. Last weekend, Alex wrote and recorded a 'radio advert' about an imaginary PC game - he is also an expert on Publisher, I need to get some lessons from him!

In Autumn 09 we started Fast Forward again and Alex has completed another 4 programmes. It was quite hard going fitting in 50 minutes a day of extra work after school, but Alex is very motivated to do well in his KS2 SATs and so put in the effort. We will complete Reading 4 later in the year. The gains to date have been very satisfying, particularly in reading comprehension and range of vocabulary.

Alex has set himself the target of level 4 in English KS2 SATS and level 5 in Maths. Whilst this will be an enormous leap from the levels he was working at last year (about 2a in English and 3c in Maths), it's not impossible - he is already achieving level 4 in Maths! The LEA Educational Psychologist said that Alex was motivated, engaged and enthusiastic, showing a good level of resilience and optimism. As a teacher, I know you can't ask for more than that from any student!

In terms of the biomed, we have resumed the basic minerals and vitamins after a little break and Alex loves the MB12 lollies...he refers to them as his injection lollies. He seems healthy but suffers (like me) from Hay Fever in the summer months.

He enjoys meeting up with his friends, playing football and basketball and 'chilling' in the sauna at our sports club. He has a very normal feisty relationship with his big sister and has become an accomplished negotiator - he drives a hard bargain!

To sum up the year, Alex has made great gains academically, his future seems secure at More House and we believe he will go on to do well in GCSEs and beyond. We approach the next year feeling calm and confident.

Tina (Alex's Mum)
March 10