Edward’s Story

My name is Lara Hawkings; I am part of the Treating Autism team and recently presented “Edward’s Story” at the Treating Autism conference in Surrey, England.

Edward: born 2002, diagnosed with autistic spectrum disorder in June 2006.

When I was pregnant, Edward contracted an interuterine virus; this meant he contracted a virus through the placenta.  He managed to fight the virus off and was left with calcifications (scarring) around his liver. It was picked up on his 22-week scan. We were seen at King’s College Hospital, and Edward was given full brain and body scans.  We were given the “all clear” in August 2002. Edward was born 8 days after his due date. I had a very, very long labor.  He was born with his cord around his neck, received two vitamin K injections, and was put under a light blanket for jaundice for a day-and-a-half.

When we took Edward home he was so beautiful; he was such a joy to look at and be with. He was always an active baby; he liked to see what was going on and loved being outdoors. I adored him.

His height and weight were always normal. I started him on baby rice, but he wasn’t interested, so I left it until I thought he was. He ate solid food in August 2003 and was eating toast himself by May. He always loved milk!

I recorded some of his first events in one of those baby books; I am really glad I did, as it was a clear record that his development was on track and I had no worries.  So, by 1-year-old he was babbling and using a few words; clapping his hands; crawling at 9-months, walking at 13-months; and waving goodbye at 10-months.  He also recognized his name when he was 6-months-old.

So, what happened after he was 1-year-old? His milk dependency was still there, and I always carried a rucksack full of bottles ready to be made up to feed him in case of a tantrum.  Edward did appear to become very frightened of loud noises and would cling to me if a motorbike went past or when his brother was crying.

At 18-months onward, Edward used to lick everything, whether we were in the playground or at my Mum’s house. It was mostly curved and shaped things that he liked to lick or feel with his tongue; we thought it was all part of teething.

Edward’s brother, Toby was born when he was 19-months-old; Edward didn’t take too much notice of Toby, so we thought we had managed sibling rivalry really well.

I found a toddler group that I started to take him to and met up with some people that I had met at postnatal group. Why wasn’t he playing or joining in? “He is a boy,” that’s what everyone told me. Of course, that old line – great!  The “differences” would continue to grow; he would look out of windows and see shapes and patterns instead of doors and wheels; he would not show any interest in drawing, painting, chasing others or playing with bricks. He took little notice of Toby and little notice of us.

Edward seemed to get more distant as he got older and would not respond to anyone calling his name, nor would he turn around to hear someone speak. It was around this stage that his eye contact slowly disappeared, as well as his emotions.  We did not notice, as it was so gradual.

When Edward did get upset — his face would go blue, he would stop breathing — I would give him a bottle of milk.  I dared not go anywhere without a bottle and my milk powder.

He started to chew his hand and used to make it really sore; I was told it was eczema.  I just didn’t think he could be in pain, and that he was hurting himself because of it.

Then, as he got a little older, it became obvious that he had to do things a certain way.  If you are a parent of a child with autism reading this you will understand; our whole lives were now revolving around Edward, so we have to drive the same way to Nanny’s house; we have to get out of the car in a certain way; we have to make sure his shoes do not get dirty.  He was not able to tell me what he wanted and would take my hand and lead me around; he seemed very uneasy and looked pale and his clothes fitted him for two years!

“Where was the health visitor?” you may be asking.  Well in my area, the health visitors do not visit for checkups; instead you get a questionnaire sent to you.  There were no autism marker sign questions on there at all and I answered them positively because I wanted him to be okay.

At ages two and three everything became too dangerous for Edward: getting in and out of the car; walking up and down stairs; running; walking through a doorway; being out on the street; being in a playground; being in a car park.  The latter ones still apply; he has no sense of danger at all.  Everyone said to me, “Oh, it must be getting easier now that the boys are a little older.” Life was far from getting easier, it was getting harder and I still did not know why.

He was unable to tell me if he was hungry, thirsty, full up, had a wet nappy or had a soiled nappy.  He didn’t say if he was happy or sad or why he was upset.  He couldn’t convey any emotion to us. He didn’t nod or shake his head.  Edward never pointed at anything and he had no interest in puzzles or bricks.  He liked “pop out” cause-and-effect toys and repetitive toys.  He showed no interest in dressing up or drawing.  He started to fear getting paint on him and being dirty when he once loved it.

Bowels (one of our favorite subjects at Treating Autism!)
Edward had bad bowel problems from the age of about 6-months; I used to push his legs so he could poo.  I was told that his bowels were developing and it was normal; I was told to give him lactulose and orange juice.  His bowel problems continued into his infancy.  When he was a little older our doctor said it was okay for children to have a bowel movement once a week and prescribed lactulose formally.  We did not like to give that to him too much so we choose prunes and prune juice.  But I accepted that as an answer.

Nursery
When Edward went back to nursery after the Christmas break in 2006, his teacher suggested that Edward have a developmental check from the heath visitor.  I just said, “Okay.” As I was talking to the health visitor about Edward, all the things I was saying scared me, and I knew that something wasn’t right.  We were, like most parents, just managing the situation on a day-to-day basis.  It sounded quite strange to hear myself describe the things that he would and wouldn’t eat, and I found myself making excuses.

The heath visitor suggested she would make an appointment to see the pediatrician to do a full checkup.  I declined, saying that I did not want him to be seen as different.  It took me a week to call her back to say it may be a good idea.

The appointment to see the pediatrician took four months.  During those four months, I went on a journey to help Edward.  At first all the information I read was about dealing with situations and behavior.  Once a happy healthy boy, he now looked like a poorly, helpless, sad, clumsy boy with little speech, who would get upset very easily, or not have any friends.  I could not accept that my happy little Edward had changed so much that nothing could be done; I wanted to find out what had happened.

I found biomedical intervention thanks to Google and thanks to Karen Seroussi’s book, Unraveling the Mystery of Autism and Pervasive Developmental Disorder, which was the first one I read about autism.  So, instead of being given information like, “Your son will have autism forever,” and being given a very gloomy outlook about how to control his behavior, what I found was a possible reason why Edward had developed these particular behaviors in the first place.  I looked at the Autism Research Institute website and at the Autism Research Unit and into gluten-free and casein-free diets.  Initially we stared the diet in the hope that it would help Edward’s bowels; however, the more I read, the more I discovered that a lot of children with autism have gut and bowel problems, they are just widely accepted as part of their autism.

Edward got diagnosed on our first appointment as having moderate ASD and chronic constipation.  Leaflets were given to me and nothing was done about his bowel problem.

We started biomedical treatment in May 2006.

On 16th May 2006 I started my diary and Edward started his GFCF diet.  We added supplements in at a later date.   He has not had milk or gluten since.  He was having soya, but after a frightening experience of watching Edward regress into autism again after he ate soya in pasta, soya is now off of our shopping list.

We were fortunate that Edward reacted well to no milk; he made an improvement after three days of no milk: he started to look at us again and we got goose bumps.  The NHS does not support biomedical intervention, and it is widely misunderstood why removing certain food groups may help your child.  I did, however, find support in Treating Autism – this was when I found out that there was a two-day conference in February 2007.  I couldn’t believe my luck. I also joined the Yahoo Autism Biomedical Support Group — Wow, a group of UK parents helping their children like me!

After four weeks we could take Edward to a shop and go out for an hour without a “meltdown.”  We could talk to him and he would listen, although he still needed help to move on from one situation to another; he needed a plan of action, he could not deal with really busy places, neither could I.

We started off giving him multivitamins and probiotics — he did well on these, as well as his diet.  He was shown to have a leaky gut in the test that Paul Shattock did at the Autism Research Unit.  In January 2007, we started enzymes to help break down food in his gut.  He still had bad bowel problems, so we gave him oxy powder, vitamin C and aloe vera.

After the Treating Autism Conference, we had Edward privately tested and found that he had a lot of yeast.  We had his heavy metals tested with a porphyrin test and found he was high with lead, aluminium, mercury and arsenic.  We also saw a Defeat Autism Now! practitioner in March 2007 who was able to put together a treatment plan for Edward.

After biomedical intervention, he was able to make friends at nursery and interacted and played with them.  He loved to watch The Magic Key and always had the subtitles on; he taught himself to read.  One of the nursery teachers had been away from the nursery for three months; when she returned to work, she asked about Edward, as she could not believe how much he had changed…. She was crying because she was overwhelmed by the positive changes he had made.

Edward now has really good eye contact for a boy with ASD.  His speech is clear without speech therapy.  He is a happy boy; he comes into our room in the morning looks at me straight in the eye and says, “Hello Mummy, hello Daddy, it’s morning, it’s sunny, can I have a drink of juice please?” He is able to tell me what he wants, and it is remarkable to watch him.  When Mark comes home from work and opens the door he says, “Hello.” Edward will reply, “Daddy, you are home from work,” and Edward gives him a cuddle if his brother doesn’t get there first.

Edward is a different boy; we have treated his yeast bugs, and he is “with us.” He is still medically ill with his bowel problems, but we are now seeing a gastroenterologist about this.  He has been diagnosed with mild chronic inflammation of the bowel and reflux.

These medical problems are so common for our children as their gut and bowels are so damaged.  I would encourage parents to seek medical help for their children, take photos of their tummies, of their poo, of their nappies.  Be serious: do not accept that your child’s bowel and gut problems do not affect their autism at all.  Be strong and keep asking for help.  The sad thing is because the majority of our children have speech delays they are unable to tell us that their tummies or chests hurt.  Together with the fact that the pain would have been with them for so long that they take it for granted that it is part of them.  I would not have known that Edward had reflux at all if he had not had an endoscopy.

We treasure Edward and adore him and his brother; we know we are lucky to have two lovely boys. I am starting to invite some school friends over to our house for Edward to play with as he continues to have a social development delay and his friends play an important part in teaching him how to be 5-years-old.

I am a complete believer that biomedical interventions help our children and will continue to support parents and be a member of the Treating Autism team.  Their web site is www.treatingautism.com.   Children with autism can have a bright, happy, and healthy future.