This month… all those articles that wouldn’t fit in to last months edition plus lot’s more. Don’t forget to look on the back page for this months meeting. Also on the back page is the date for the all new

recently set up by two of our finest Laura Clayton & Aaron Swithenbank – Hope everything goes well.

Well that’s all from me till next month…. Rob

The following is another event which sounds very interesting. This is being arranged by the Doncaster Autistic Society.

A wonderful opportunity to hear this prominent author speak about her personal perspective of life with Asperger Syndrome. Wendy is currently working for her PhD in Psychology. Her topic is ‘Autism and Stress’. Wendy, a mother of four, was originally diagnosed as being intellectually disabled, then in her teens, as being schizophrenic, and finally in 1994, as having an autistic spectrum disorder. Wendy is the author of four books including "Life Behind Glass", "Understanding and Working with the Spectrum of Autism" and "Build Your Own Life, A Self-Help Guide for Individuals with Asperger’s Syndrome". Wendy’s youngest son, now 21 years of age, was diagnosed at the age of 12 as having Asperger’s Syndrome.

These prices also include light refreshments.

I understand that bookings need to be in before 24^th September (well before you receive this Newsletter) but perhaps anyone interested could still contact the organiser as, you never know, there might still be places left. For details/booking, please contact Amanda Goble, Administrator, Doncaster Autistic Society, Tel: 01302 328271 Fax: 01302 328914.

(Autism Initiatives – Reg. Charity No. 702632)

THE INFORMATION YOU’VE BEEN WAITING FOR!

Listen to the experts speak including….

Wendy Lawson (Asperger’s Syndrome)

Dr Steve Hinder (Sensory & Motor Difficulties & Medication in ASD)

Dr Paul Shattock (Allergy Induced Autism)

An event not to be missed for those who want to know more about Autism

For people who don’t know me; I’m Laura, am almost 20yrs old and have Asperger’s Syndrome. I’ve just moved into my own house and have a lot of support to live independently from staff that come into my home. I lived at a residential ‘special’ school/college for people with Asperger’s in Sunderland up until summer last year and have been taking my time to settle into a routine and get used to everything since then. I started doing voluntary work at my old high school but had to give it up as I got ill, here is the diary from the first week.

Went to my old high school today to see the SENCO (Mrs Stephenson) and her ‘new’ special needs unit, ‘cos I haven’t seen her for absolutely ages and the unit (named ‘the base’) wasn’t there when I went to that school- 4 years ago.

I’d previously talked to her about doing some voluntary work (‘cos I am bored out of my brains sitting in my new home doing nothing), she told me about a lad in year 7 (the first year) who was having some problems and asked if I’d be interested in doing some work with him… I said ‘yeah’ so she introduced me to him and now I’m going at 9:10 every school morning to read with him.

I thought it might be interesting to keep a diary about my first week as I’ve never done anything like this before (except helping other students in my classes when I was at college) and someone might find it interesting.

I’m really nervous about it, I have lots of memories about being totally lost and bullied at that school and I know kids will probably pick up that I’m different and they can be cruel sometimes... I’m also worried that I’ll be too quiet and shy and the lad will think I’m weird or stupid or that I’ll mess up and will actually show myself to be really stupid.

I’m also really pleased that I’ve been trusted to do this and kinda excited ‘cos it’s the type of thing I’d like to do in the future (my aim is to be a special needs assistant in a junior school with a child with AS/Autism).

I’ll guess I’ll have to wait and see how it goes.

Had a bad nights sleep even though I’d taken a sleeping tablet… Most of my dreams/nightmares were about the high school too. Woke up at 8am just before my support worker left (I have sleep-ins every other night), anyone who knows me well will know I’m not a morning person so waking up that early everyday is going to be a challenge for me.

I was a bit early when I reached the school so had to wait till form was over- met one of the ladies from the autism support group who was also reading with someone, it was nice to see a familiar face amongst all the strangers, she told me about what she did and helped me feel a bit more confident.

Then the boy I’m working with and I went into a corner to read the book he had chosen, it was a play so we both took turns reading characters… But there was a power cut and it got too dark to see so we sat and chatted about pets and Barnsley football club for a short while (I’m not very good at small talk and think he noticed) and then moved into the classroom near a window. The classroom was very noisy and kids were wandering round so I think we both had trouble concentrating, plus a whole hour is a long time to read non-stop and although I gave him a break half way it wasn’t long enough ‘cos I couldn’t think of much to talk to him about. We’re going to start doing some word games from the teachers to break the time up a bit I think.

On the whole I think it went ok- we read almost all the book and I managed to help him with some words which is what I was there for.

This wasn’t as scary as yesterday.

We finished the book and did a word game- spelling out words with scrabble letters, then the lad played on the computer for a while doing a game called ‘success maker’. Then we picked and started to read a new book for the last few minutes.

I found out that he couldn’t spell his brothers names (I had to call a teacher over to spell one though so I can’t really talk), so I think we’ll work on that.

I realised that I have to pay more attention to my eye contact as he communicates a lot with that- I’ll have to try and remember.

I felt better, am getting more confidant and he’s getting used to me now. It’s really tired me out though, slept all day and missed seeing a friend in town.

Went along today but the lad didn’t show up so I went up to the school library and got some joke books out. All the kids turned round to look who’d just come in to the library but I wasn’t bothered, I guess I look kinda different to all the other people who work at the school- having pink hair and my hoodies and I’m used to being stared at. The librarian was really nice.

I then worked on putting a few of the jokes onto the computer and making some cards so he could match up the jokes with the punch lines… The printer had broken though so I still to finish them tomorrow, had a laugh with one of the teachers an a few students about them breaking the printer- that was fun.

I think I impressed the teacher who was helping me sort stuff out, by knowing that comic sans would be the easiest font for him to read (this took years for psychologists to work out she said- seemed common sense to me though, as it’s the most simple font to read) and also knowing about Irlen Syndrome.

My rat woke me up at 7:30 which I wasn’t pleased about ‘cos I lost half an hour of sleep.

I laminated the jokes and one of the other staff cut them up while me and the lad did some reading, once the cards were finished he couldn’t wait to play them so we stopped reading and played a game with the cards- matching up the jokes with the punch lines, that was fun.

We then talked about stuff, mainly his mansion and the staff he has- I think that he enjoys telling stories. One of the other kids who I’m getting to know (as he’s quite ‘badly behaved’ and always comes over and talks to us to avoid his work) was saying that the boy is mental that wasn’t very nice. I think the lad I help gets bullied a lot.

I think this week went well; I’m no longer scared about going and am actually enjoying it, I haven’t been bullied like I thought I might be and feel more confident and at home with the surroundings and I also love the smile on his face when he sees I’m waiting for him.

I’m looking forward to next week.

On Wednesday 23^rd July another paper dealing with autism was published.

It got brief, fleeting coverage on some peak time news programmes. Because I considered it to be contentious, mainly because I disagreed with its reported findings I naturally waited for a contrary point of view. None that I saw came that night, nor the next day, neither to date have I yet seen one. Not in the newspapers, television or radio. And believe me, I do pay attention to all three.

The report’s main reported conclusion was that there is no real increase in autism itself, simply that previously cases of autism were once noted either as "developmental delays" or simply not noticed at all. Incidence of autism in their view remains unchanged, at the same percentage of population as ever – throughout history – and I hope I’m not misquoting the news reports / paper.

I’m not a scientist, I have no medical education, I’m actually a plasterer and I can’t easily "wheel out" contradictory evidence. All I have is the anecdotal, observational, gut feelings that come with being very interested in this subject and from being associated with this group for the past few years. In my view this report is totally incorrect, flawed in some fundamental, basic way because it’s……well, wrong!

I can quote the 15 month waiting list for diagnosis in our area with a queue of three figures, reported to us by many parents of children on that list. I can tell you the sheer quantity of phone calls this group receives from enquirers, I can report the apparent numbers of people with autism in the small street where I live. Just today a bloke enquired with me on behalf of his sister who has two such children, this was going along on a Sunday cycle ride with our local club. A lad that sometimes goes to football games with us is another example, I believe our two local comprehensive schools have at least ten such pupils between them.

Seven years ago I’d only once knowingly heard the word autism once, just once, same for Norma. Nowadays it seems to feature at least weekly on national news programmes, there now must be at minimum 15 to 20 TV programmes or major features annually on this subject. Quite major articles on autism now frequently appear in national press, the scientific press and pretty often on national and local radio. All evidence, I would say of a genuine increase in incidence. How about the "exponential" Californian increase in autism?

Don’t even start me on present day "news management" and the one sided reporting of MMR. Yes, many people could write a very reasoned rebuttal of this almost uncorroborated rant of mine. But how many of you, our members disagree "in their hearts"?

Jrc

"As the mother of an autistic son, I have always believed that he should be educated in mainstream school with SNA support. The school he attends has an Autism Resource attached. Although he does not attend this unit, I always believed that understanding and autism awareness would automatically filter through the school to the teachers, pupils, and parents.

Unfortunately, this has not been the case but I do not blame the school. There have been many difficulties and problems to overcome but we have always worked hard together to resolve these ongoing problems. Sometimes I have disagreed with the school’s decisions but, in the long run, I acknowledge how they tried - but failed.

The parents however are a different matter! How I wish some parents could spend just a week in the shoes of an autistic child’s parent to experience this life themselves. If only they knew how hard things can be but they haven’t a clue and they don’t want to know. When problems arise and I am trying so hard to find a solution, I am greeted with anger and referred to as ‘that mother’ of ‘that child’.

Last June, some parents organised a picket line outside my son’s school, refusing to allow their children into class until he was removed. My son spent four weeks in isolation within the school until a compromise was found. In the end, five children left the school.

My son, who returned to school this term, has cried most mornings and every night. He says he has no friends at school because he has ‘this evil thing inside him called Autism’. He says that I should ‘spit at him because he is naughty, even when he tries to be a good boy’ but the most alarming and heart-rending comment he has made is that he ‘wanted to get a knife to stab his Autism out of himself.’

I’ve sat and cried for the last four days. I feel lost and no longer know which way to turn. My son’s self-esteem is non-existent and I am so scared about the future. I do know one thing though – I will be withdrawing him from mainstream school this week. Everything else is unknown.

P.S. I would greatly welcome and appreciate any ideas or feedback from parents or carers who are in, or have experienced, similar problems."

Healing the Mind

The idea that disease starts in the gut is not new but a Cambridge practitioner has taken it a stage farther by showing how the restoration of gut flora plays a crucial part in the treatment of children with learning and behavioural disorders.

Fiona passed me quite a lengthy article on this subject, written by CAM editor Simon Martin on his talks with Dr Natasha Campbell-McBride, MD, of the Cambridge Nutrition Clinic. Natasha has a son who was diagnosed autistic at the age of three. At three and a half, he started a programme

of treatment and now at 10 he attends a mainstream school. She remembers vividly the traumatic moment when ‘Autism’ was announced by her doctor, followed by the statement ‘there is nothing that can be done’. Well, being a doctor herself, Natasha had to say ‘Your doctor is wrong! There is a lot that can be done’.

Natasha and her partner were founding members of PEACH (Parents for the Early intervention of Autism in Children). PEACH is a parent-led group helping parents of children with autism Intensive Behavioural Intervention Programmes. Also known as ABA, this approach is based on highly personalised, one-to-one coaching that teaches children language, play, academic, intellectual, self-help and social skills. An ABA programme can sometimes achieve miracles but Natasha’s research and experience has shown her that it is still not enough.

"Looking back now, nobody could predict that a little boy without any language, constantly self stimulating, eating very little apart from milk from a baby bottle could undergo such a transformation. On the whole, what happened to him can only be described as a miracle, however, his achievements are not solely due to the ABA programme" says Natasha. "A huge part of his transformation was in his nutritional management. Being trained as a medical doctor I knew that conventional medicine has nothing to offer children like my son, so I went back to University and trained as a nutritionist. We have changed his diet and after trying various nutritional supplements, we have found the ones that work. An autistic child needs a very special nutritional management, a major part of it being – putting his gut flora right. Gut flora is a living organism very sensitive to the diet, antibiotics, steroids and stress.

"Diet on its own is a very powerful tool in helping an autistic child but it cannot solve all the problems without nutritional supplements. In order to rebalance the gut flora, it is essential to use a strong multi-strain probiotic. He showed excellent response to probiotics. From about two to three months after starting it we saw dramatic improvements in our son. His eye contact became normal and stable, the self-stimulation had almost disappeared, he generally became more aware and with us. Everybody comments on how healthy he looks. He used to be on a milk-free diet. We introduced some milk products back into his diet and found that he tolerates it now without any symptoms." I have passed the full six-page article (and diet) to Laura, our Librarian and this will be available on request.

Very pleased to announce the first meeting of this grouping is to be at the "Horse and Jockey" in central Wakefield on the evening of Monday 13^th October.

The time is yet to be arranged, but that will be announced fairly soon. I quote here from Laura’s original announcement two months ago in this newsletter;-

"Aaron Swithenbank and me are thinking of starting a social group for young people and adults with Aspergers and high functioning autism, at the moment we are collecting details of people who may be interested". "So if you are, or you know someone who might be, please contact me by email thanks, Laura C."

Laura’s email address is;

rainbowspirals@yahoo.co.uk , please contact her if you fancy it, for time of meeting.