Letters

LAUREN HAWKINS UPDATE

Hello my name is Fay Hawkins and I am writing to update you on my daughter Lauren Hawkins, who was featured in the last issue of The Autism File. Since flying out to America in July to see Dr Goldberg who is looking into the viral and neuro-immune issues of autism, Lauren has started to make some good progress. She was put on an anti-viral called Valtrex after her results showed that she had Human Herpes Virus 6 and a weak immune system. Within a couple of weeks we noticed that Lauren was staring more and seemed to be a little bit more tuned in. Lauren was also very upset but we were informed that this was a good sign that the virus was being disturbed. After a month of being on Valtrex, Lauren was put on Famvir which is another anti-viral drug. We found that Lauren seemed very upset most of the time being on Famvir and we didn’t really notice any change so after a few weeks she was taken off it. Dr Goldberg then wanted to see whether or not Lauren had any side effects when coming off the Famvir so he didn’t prescribe any drugs for the next two weeks. Dr Goldberg then introduced an SSRI called Paxal, which is an anti-depressant drug. When Lauren had her brain scan in America it showed that she had decreased blood flow in the front temporal lobes so by giving her the Paxal it would help to boost the blood flow to those areas affected. This drug has helped Lauren the most so far. She is a lot more alert and aware of her surroundings. Her ears have become a lot more sensitive as well. She is starting to take notice of different people around her as well. Lauren had only spoken once in three years up until the past few weeks but after taking Paxal she has come out with ‘look’ quite a few times. Also last week she picked up her drink beaker and as she came to walk into the kitchen she said, ‘I want a drink’ to herself. We believe it is because of the medication that she is on. We know that it is going to take time to fine-tune the medication for Lauren. Dr Goldberg is planning on introducing Kutapressin injections, which are specifically for breaking down and suppressing the HHV6 Virus and also to boost the immune system. It hasn’t been easy but we firmly believe in Dr Goldberg. If by any chance what we are doing does not work out, we will keep trying until our daughter has the quality of life she deserves. Fay Hawkins

Yeast and Autism

Most children with autism, PDD, AD(H)D, and learning disabilities have an overgrowth of intestinal yeast, also known as candida. This situation is caused by two major factors: the overuse of antibiotics and the large amount of sugar in the diet. In the US, one of the main uses of antibiotics is for ear infections. I agree with Canadian researchers who have found a high correlation between the prevalence of ear infections and the incidence of autism.
Here’s what happens: In a healthy intestinal tract, beneficial bacteria, yeasts and fungi coexist. Their shared job is to digest food. When a child takes an antibiotic, the drug disrupts the population of normal digestive flora. In the gut, antibiotics kill off both harmful and beneficial bacteria. Antibiotics, do not, however, destroy yeasts and other fungi, but, in fact, may stimulate them to proliferate. The result is that the growing yeast have no competition, so they are able to get the lion’s share of all the food that the child eats.Yeasts produce toxic chemical by-products, such as arabinose and tartaric acid, that are normally present only in very low concentrations. As the yeast colonies grow, these chemicals become excessive and are absorbed from the intestinal tract into the bloodstream, and finally excreted in the urine (where they can be tested). This entire process can disrupt the functioning of the brain.
I have developed a urine test that identifies these yeast-related abnormalities. Treatment with low sugar diet and antifungal compounds has been very effective in reducing symptoms of autism. Some of the improvements are increased focus and concentration, improved academic performance, better sleep patterns, reduced aggressive and self-destructive behaviour, and better eye contact. My research is summarised in the book, Biological Treatments for Autism and PDD. Additional testing for food allergies and immunodeficiency is also recommended. More information, the book, and test kits can be obtained by contacting The Great Plains Laboratory at 9335 W. 75th Street, Overland Park, KS 66204, phone: 913-341-8949 or fax: 913-341-6207, www.greatplainslaboratory.com, GPL4U@aol.com.
Dr William Shaw

SCHOOL FOR THOUGHT

It was so difficult for me when it was first hinted that there might be other problems with my son Jack than just his continual running nose. I experienced very little bonding with Jack as he remained distant and in his own world. I just got on with the practical side of looking after him. He was three years old. We were both very lonely and didn’t know how to talk to each other. Speech and language therapy began. Jack and I still hadn’t connected at all.
Jack started school. We had all the back up going, a new thing called Teach Speech with a satellite link to the speech therapist once a week. Jack was very happy at this lovely gentle school that cushioned him. We still hadn’t bonded!
Jack was now seven. In September he had to leave this lovely school and face the reality of 35 children in a class, more than one new teacher, a new ESA, a new speech and language therapist and a lot more expectation placed upon him.
I was worried that he would end up having behavioural problems, so we looked into private education and rallied around the family for sponsorship. The private school, one I had attended had an average class size of 15. I went for the interview and explained the situation, they said fine, they would have him in for an assessment day. I was a bit worried about this because of his difficulties and said so but was reassured this assessment was only to determine which class he would be best suited.
On the assessment day I sat in the class for ten minutes to make sure he was happy. They started off with a spelling test – Jack hadn’t learnt any of the words but he tried. When I later went to to find out how he had done, his precious work that he had tried so hard to do, was limply put in front of me. I was told, ‘Well, really, I don’t think we can have him, I mean, look, he reverses some of his numbers.’
While all these professionals were saying the good the bad and the ugly about Jack, I still had no idea how to love him or to feel and receive the love he was giving me. I was trying to work and had the demands of my family and a part time job. I attended support groups and sometimes we would have the LEA representative in to discuss the lack of funding and hear how hard their job was.
Eventually I withdrew Jack from school. The wall I came up against was immense. I just didn’t expect the amount of put downs I received. Yet these ‘professionals’ knew little about me, my son or autism beyond what they had read. When the ‘experts’ can’t cure your child, or he has a relapse, the disappointment that is felt is huge and depressing. The feeling of helplessness can be overwhelming. It’s so personal, it’s so invasive, it’s your life that’s taken over, and not one professional agrees with the other.
Well, since we took Jack out of school he and I have bonded and we love each other very much. He shouts at me and I shout at him. Sometimes we get things done, and sometimes we don’t. Sometimes we just recognise the fact that we like the same things and sometimes we go out and play football. Often we sit and watch videos. Our favourite is the Simpsons and we quote catch phrases to each other.
Jack is experiencing something he never got from the professionals – unconditional love. When the doors of childhood close the one thing, God willing, I will have done is spent time with my kids.
Liz Atkinson

A-Z Method

Immediately upon learning that our little boy, Caleb, was autistic, my husband and I did the usual parent thing and ordered from the NAS a truckload of all the books ever published that might be useful. Three months later, still ploughing our way through them, we happened to read a great book called Love, Hope & Autism by Joanna Edgar (try it; well worth a look at …). One of the therapy aids that the author had tried, with huge success, was the AZ Method video. After reading about it, we sent off for the instruction video straightaway.
The AZ Method was devised by Fahri and Fern Zihini, the parents of an autistic child. They noted how their son, Adam, loved to watch television and videos (as do most autistic children) but decided to make their own video images of words and phrases they wanted him to learn. Within six months their son learned 250 words.
The Zihini’s then made their own instructional video of their technique to aid other parents in the same way, and they called it the AZ Method.
While it may not work for every autistic child, we decided to give it a go and, like the author above, had amazing results.
We borrowed, then bought, a video camcorder and, carefully following the instruction video, got down to work.
Any concerns about whether Caleb would actually want to watch the finished version were quickly swept aside - he loved it just as much as Postman Pat, Thomas and the rest - and within a few days he was imitating many of the words we wanted him to learn and had learnt the names of colours.
We estimate that in approximately one month Caleb has learnt 50 new words through watching our own video once a day. And of course we are feverishly adding new words and phrases as often as we can! Overall, we have found it an outstanding success.
This is such a brilliantly simple, yet effective means of helping autistic children to learn not only speech and receptive understanding, but how the world works. With a bit of practice, you quickly realise that manners, stories, social skills, toy play and so much more can be taught – at your pace and your child’s pace.
For further information and for prices of the instruction video please contact Mr & Mrs Zihini, 28 Grove Lane, Bayston Hill, Shrewsbury, Shropshire SY3 0NH. Victoria Browning

A WORLD OF DIFFERENCE

I am a speech and language therapist who has been seeing Child A on a regular basis since January 1999. He initially presented me with some ‘typical’ autistic tendencies, no real spoken language, poor attention, intolerance of strangers and of ‘direction’, poor social skills and weak symbolic play. Child A was in ‘another world’. He could imitate his own name but didn’t do so meaningfully. He did not appear to have any need for communication with others, or to realise that speech was of any use to him.
We worked out a series of achievable aims and areas to work on and then presented graded goals to him, building on each success. For example, gaining and holding his attention was of paramount importance. A simple activity such as getting him to sit still and make eye contact was vital. We did this through using things such as using letters, numbers, certain books and singing activities. Repetition, starting with ‘more’, encouraged him to see that his vocalisation could result in his being given something that he enjoyed. He began to understand what verbal labelling meant and how, through a tactile ‘hands-on’ approach, verbs interacted with objects. We used gestures alongside this so that he could indicate his needs and lessen his frustration. Gradually, Child A learnt to accept me and now he asks for my intervention to guide him. A multi-sensorial approach (touch, vision and hearing) has worked well with him and he enjoys participating in almost all of our activities. For example, when working on ‘verbs’ and ‘prepositions’ we had a large box and Child A was encouraged to get ‘in, on and under’ the box.
Child A responds best to simple, clear and direct language. As early language is helped by symbolic (pretend) play – we have also worked hard in this area (tea parties, building tents, play trains etc). As play has improved, so has his language.
He has shown me a great sense of humour and delights in laughing at me if he thinks I’m being amusing. He has developed good eye contact and smiles at those he recognises. He is tolerant of strangers and enjoys interaction with people, especially in the ‘work’ setting. His ritual behaviour has all but vanished and he is contented with verbal praise and responds well to it. His response to adults and other children is wonderful too and he takes your hand to show what he wants. He uses his language to label objects and is linking them to verbs in simple sentences. His attention span has increased markedly and he’ll wait patiently for verbal instructions. He can be very focused and enjoys his letters, sounds and numbers and he will now be directed up to the degree of his understanding. I am very proud of his achievements. As with any learning child, Child A will have periods when he appears to regress or remain stationary for a while and then he’ll be off again, surprising me with the amount of information he’s absorbed. I don’t know whether these thoughts of mine have offered any insight, though I know that I am fortunate to be able to help make a difference.
Clare James MRCSLT Speech and Language Therapist