The Story of Matthew, Luke, Joe and Ben
Jacqui Jackson has seven children: Matthew (17); Rachel (15); Sarah (14); Luke (13); Anna (11); Joseph (8) and Ben (4). Matthew has dyslexia and co-ordination problems, Luke has Aspergers Syndrome, Joseph has suspected ADHD and Ben has Autism. The girls are all 'normal'. Just over a year ago Jacqui eliminated all dairy and grain - gluten products from Luke, Joe and Ben's diets.
When Luke was born he came out screaming and never seemed to stop. At his first health check the doctors realised he had a severe squint and ‘'wobbly eyes'. He never wanted to be held, never wanted cuddling and spent hours spinning himself in circles and twirling pieces of string. As he grew older Luke suffered constant stomach pains and diarrhoea and developed strange obsessions such as wearing a balaclava all day and night. Small sounds hurt his ears and he was pale with black rings around his eyes. After several assessments he was diagnosed with Asperger Syndrome (AS), a form of Autism. Jacqui was devastated but relieved that at last she knew what she was dealing with.
Joseph was born prematurely. Before long he refused breast milk and went on to bottles. From then on Jacqui noticed a change in him. He became irritable, vomited after every feed and had constant diarrhoea. Jacqui saw a paediatric gastroenterologist who suggested a gluten and dairy free diet. But as Joe grew older his behaviour became worse. He could never sit still or be quiet and would have cravings for forbidden foods like chocolate and biscuits. Jacqui had to put locks on the cupboards and doors to stop his night time hunt for ‘'off limit' foods. Doctors suggested that Joe had ADHD.
Around this time Jacqui's marriage began to suffer and when she fell pregnant with Ben it broke up completely. Jacqui and her husband separated in 1998, leaving her with six children and a very sick baby. Ben screamed continually and was very slow to develop. He seemed to be locked in his own world. He would roll around on the floor laughing hysterically as if he'd been drugged. He didn't speak and could hardly walk. Ben was diagnosed with Autism when he was 3.
A lengthy trawl of the internet put Jacqui in touch with Allergy Induced Autism (AIA), Marilyn Le Breton, and the gluten/casein/MSG/Aspartame free diet with which they have been so successful. It appears that the digestions of certain children are unable to break down the gluten & casein in wheat and milk with the result that protein fractions pass through the bloodstream into the brain causing autistic symptoms. Urine tests on Luke suggested a high likelihood of an intolerance to gluten and casein, so Jacqui decided to remove all grain and milk products from everything the three boys ate.
It took around 2 weeks for the gluten and casein to work it's way out of Luke's system, and he remembers feeling really depressed and suffering terrible diarrhoea and stomach pains. But once the withdrawal period ended real improvements began taking place. Luke says he began to be able to think a lot more clearly, and to feel healthier and more confident. The black rings under his eyes disappeared, his stomach pains and constant diarrhoea stopped,as did his regular panic attacks.
Jacqui says that Luke's personality is completely different –- that he isn't as ‘'wooden' as he was, and that he now picks up on subtle humour and sarcasm. Luke was so inspired by the changes that he underwent after going on the diet that he wrote a book all about it, called A User Guide to the GF/CF Diet for Autism, Asperger Syndrome and ADHD. He wrote the book at 12 years old in just 2 months.
Ben screamed for 3 days, but on the fourth day he spoke the first words he'd ever said - 'Mummy I want toast please'.” He also began walking shortly after beginning the diet. Joe's withdrawal took about 10 days, and he was much more hyperactive than usual at the beginning of this period, followed by an uncharacteristically quiet phase. But now there has been a huge change in Joe's behaviour. He is polite, calm and gentle.
If there are any slip ups in the diet the boys will suffer immediately so it has to be an all or nothing approach. Jacqui has separate areas in her kitchen for the milk and wheat eaters and for those that don’t, and bakes an amazing variety of cakes, bread, biscuits and meals using GF/CF free ingredients. Some of her most used recipes are listed at the back of Luke's book.
From Luke’s Standpoint
Having written two books already (shameless plug here!) - A user guide to the GF/CF diet for autism, Asperger syndrome and AD/HD and ‘Freaks, Geeks and Asperger Syndrome – A user guide to adolescence’, I guess I am getting quite used to telling people a little about what it is like in 'my world'. I have written that in inverted commas because although in many ways I feel as if I am from a different planet, I am also painfully aware that to get through life, I must rub shoulders with many different people, most of whom think and probably feel different to me. 'Rub shoulders' by the way, means to work alongside –- I personally have difficulties understanding such expressions. After all, we rarely do rub shoulders with people. In fact I usually mix with adults so they are all taller than me!
Maybe I should explain one of the reasons why I have difficulty with such expressions. I have Asperger Syndrome and many people with AS have difficulties understanding these things. Another reason of course is that the English language is full of illogical expressions!
It seems that, as part of the autism family, AS people have difficulties (I prefer to say differences) in communication, imagination and social interaction.
Also many of us have specialist subjects or 'obsessions'. Although I don't have any hard facts on exactly what AS is, I do have my opinion. To me, AS is a more extreme version of life. Sounds seem louder, lights seem brighter, smells seem –- well smellier.
The world, to me seems full of disorganisation. People bustle about like ants, pushing and shoving, talking and making strange and inexplicable expressions and I for one, find it very difficult to understand sometimes. At these times I do actually feel very different and I have to repeat my mantra to myself under my breath 'different is cool, different is cool' otherwise I may actually feel as if I am disabled in some way.
I think this may be the time to briefly mention the fact that my life has become SO much better since being on a gluten and casein free diet (that's why I wrote my first book about it). Many people on the autistic spectrum seem to have problems with gluten and casein. Allergy Induced Autism can give tons more information and help about this.
Other people may consider me and others with AS, disabled in some way but to me, Asperger syndrome is a gift. I am very proud to be who I am. Also my 'obsession' with computers means that I know one hundred percent that I am going to be able to get a job in computers, maybe web site design. I am fully determined to do this.
I must say that sometimes I do wonder what it would be like to naturally be able to mix and make friends. At school I have no real friends and am not really bothered about being alone. Making friends is something I find very hard to do –- at least with people around my own age. I have one friend who also has AS and he seems to accept my little 'idiosyncrasies' in the same way as I accept his, but apart from him (and I don't see him much) that is about it.
I suppose my life is rather different from other children my age but that doesn't bother me one bit. I have no desire whatsoever to hang around in packs and act like a sheep! Sorry if that sounds harsh and I am sure there are lots of people without AS that do have minds of their own, but I have to say that I haven't met many yet. The genuine difficulties I have with reading facial expressions and understanding hidden meanings and body language makes it virtually impossible for me to hang around with them. Anyway no one wants a 'freak' hanging around with them either!
Which leads me very nicely onto the subject of bullying. Words like 'freak' and 'geek' (and lots more that just could not be printed here) are some of the delightfully descriptive and imaginative words that other kids use to describe me. It seems that anyone who is different is automatically the subject of ridicule. For example, recently one lad held his nose whenever I walked into the classroom and everyone copied (surprise, surprise!), then laughed. I washed and showered more than I have ever done until I talked to Mum and she told me this was yet another form of bullying and that I didn't really smell at all.
All in all I must say that I think society disables people rather than AS itself. If people understood and accept others’ differences more readily, then life would be better for everyone. So to all of you reading this, AS or otherwise, always remember that 'different is cool'!
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First Published in 2003