Microsoft word - bulletin for website aug-sep 03.doc
autism london Editor’s Introduction August/September 2003 Bi-Monthly Bulletin 1 Floral Place, off Northampton Grove Dear Reader London N1 2FS Well, we’ve all been surviving the summer heatwave and hope the weather is gentler for the Helpline: 020 7359 6070 forthcoming Thorpe Park trip on August 14th, which we are all looking forward to and busy with General: 020 7704 0501 preparations for. The main news over summer concerns the change in our membership structure Fundraising: 020 7704 1123 (see below) and the ongoing changes within our Support Services team. Finance: 020 7226 7234 020 7704 2306 Support Services
In June we said a fond farewell to Jill Howard, our Support Services Officer, who has now settled into
her new home in Cambridge. We are currently recruiting for another Support Services Officer and aService Development Officer and will keep you posted on progress in the next Bulletin. In this August/September 2003 issue…
We also said a permanent welcome to Tanya Camilleri who after a year of volunteering with our helplineteam is now officially employed as our Help-line Assistant. She is with us Monday to Friday, term-timeonly, from 9.30am to 2.30pm, and will be dealing with calls to the helpline. This means a change to the
Autism London Help-line hours, which will now be open 11am to 2pm, Monday to Friday. This year, due to staff vacancies and annual leave, Support Services will be closed for two weeks during the summer, on the week beginning Monday 21st July, and the week beginning Monday 4th
Support Services Update including ALAG and ALWAG Updates (Autism London Asperger’s
August. They will be open for at least some of the days during the other weeks, and back to normal service again from 2nd September. Please also note that there will be no one in the office on Thursday 14th August. (See the Support Services Update inside for further information)
25 Years in Autism – Endings or New Beginnings? an article by Jenny Lushington
Partnership and Membership
A report on Special Educational Needs by the Audit Commission
By now you will have received a letter from our Chairman, David Scorey regarding the change of our
Speaker advert on Living with Asperger’s Syndrome
membership structure from member to supporter. This simple change in structure will enable AutismLondon to become a subsidiary of MCCH (Maidstone Community Care Housing) in October 2003,
which means we can start improving the service we deliver to you, our service users and supporters.
Many people have asked if this means they need to rejoin as Supporters and the answer is no – your
membership subscription continues and simply changes in name to ‘Supporter Subscription’ as of 1October when the partnership is finalised.
Contributions by Louis Barorowski, Gill Lea-Wilson, Jenny Lushington and Ingrid Rodgers.
If you haven’t had a chance to read this letter yet, please take a moment to do so and ensure you return
your completed form to me as soon as possible. If you have any queries concerning the letter you are
With thanks to Desmond Meldrum for his help in compiling the Bulletin.
welcome to write to me at the usual address or contact me by email at
That’s all for the moment, I hope you are all able to enjoy the sunshine while it lasts.
The views and opinions expressed in Autism London’s bulletin are not necessarily those of the organisation. We
would welcome any feedback related to information printed in this publication. Ingrid Autism London is a company limited by guarantee, registered in England no. 2669072. Registered charity no. 1009720 Autism London is a company limited by guarantee, registered in England no. 2669072. Registered charity no. 1009720 Support Services Update
· Shelterline (housing/homeless help-line)
· Supportline (emotional support to any individual)
Well, as you will have read, it is all change at Support Services! One of our volunteers, Tanya, is nowofficially employed as our Help-line Assistant. She is with us Monday to Friday, term-time only, from
Gill, Jenny and Tanya
9.30am to 2.30pm, and will be dealing with calls to the helpline: we welcome her aboard!
Help-line changes Support Services Vacancies
Please note that the hours of the Autism London Help-line have now changed: instead of 2pm to 5pm it is now open from 11am to 2pm, Monday to Friday. We hope that this new time is better for those who
MCCH and Autism London are forming a partnership. We’re using the resources and the people-centred
have to collect children from school, and for those who work and may need to phone in their lunch-
service philosophy of MCCH to support the unique depth of expertise and understanding offered by
Autism London. We’re hoping that this new initiative will maximise the opportunities we can offerservice users in the capital. If you care deeply about autism and Asperger’s syndrome, and have
Since the last Bulletin, Jill Howard has left Autism London, to take a job nearer to her home in
experience of the effects these disorders can have on individuals and families, then act now to make a
Newmarket, Cambridge. We were all very sorry to see her go, and some of you had the chance to say
difference to thousands of people across London.
goodbye at her leaving do in June. We wish her all the very best in her new job, and from what I haveheard from Jill recently, she seems to be settling in well. SERVICE DEVELOPMENT OFFICER, Islington c £27,000 pa Ref: 216/MH
Gill Lea-Wilson continues as part-time Support Services Officer, and Jenny Lushington as our very part-
Initially on a one year contract with the prospect of a permanent position, you’ll be responsible for the
time Support Services Officer! We are now looking to recruit a new full-time Support Services Officer to
overall direction and service development for users in the London area. You’ll have experience of
take over Jill’s post, as well as a Service Development Officer, to manage and develop the service. Both
working in the field of autism and related disorders, and you’ll be passionate about improving and
posts have been advertised, see the advertisment overleaf. If you know of anyone who may be interested
expanding existing service provision. In pursuit of this, you’ll look at developing and supporting local
in either of these posts, please let them know! The process of recruitment will inevitably take a few
initiatives, fundraising, and liaising with new and existing groups. You might come from a social
months, so please be aware that our capacity for taking on casework is diminished until the new staff
work/special needs background, and you’ll be leading a small team so team management experience is
members are in post. We shall keep you informed of progress.
Meanwhile, the show goes on; the Thorpe Park Trip is just a fortnight away, and we look forward to
seeing many of you on the day (14 August). The Aspergers Group (ALAG) for adults continues to be
c £21,000 pa Ref: 217/MH
popular, and meets once a month on the first Tuesday of the month. Please note that there is no meeting
By working closely with the Service Development Officer, you’ll cultivate and develop your knowledge
in August, but some members will be meeting up with us when they come along on the Thorpe Park trip.
of the field of autistic disorders and their effects on individuals, families and communities. Initially on a
The Women’s Aspergers Group (ALWAG) continues to take place on the last Thursday of the month.
one year contract with the prospect of a permanent position, you’ll provide advocacy, as well as an
Please note that both ALAG and ALWAG groups are for individuals with Asperger's syndrome, not for
outreach service – offering support, advice and information to individuals and families as well as
organise and facilitate support meetings. With experience of working with kids or adults with autism,you’ll need to be a confident networker as you will have daily contact with members, social services,
housing organisations and the general public.
This year, due to staff vacancies and annual leave, Support Services will be closed during two weeks of
For a job description and application form, please contact the recruitment line on 0845 600 1552.
The week beginning Monday 21st July, and the week beginning Monday 4th August; we shall be open
Alternatively, apply online at the MCCH website .
for at least some of the days during the other weeks, and will be back to normal from 2nd September.
Please quote the relevant reference number when calling for an application pack. Please also note that all
Please also note that there will be no one in the office on Thursday 14th August, due to the Thorpe Park
vacancies are subject to disclosure.
trip. I apologise for any inconvenience, but the answerphones will be on, so please do leave a messageand we will get back to you as soon as we can.
If you need to talk to someone more immediately, you may find it useful to try another help-line,depending on what issue you are facing. Below are a few helpline numbers you may find useful:
Alternative Helpline Numbers
· National Autistic Society- Autism Help-line
· AFASIC (for people with speech and language impairment)
· IPSEA (Independent Panel of Special Educational Advisors)
· OAASIS (info and support re special needs)
· Contact a Family (for families of children special needs)
Autism London is a company limited by guarantee, registered in England no. 2669072. Registered charity no. 1009720 Autism London is a company limited by guarantee, registered in England no. 2669072. Registered charity no. 1009720 Endings - or New Beginnings? The Summary from the Audit Commission Report on Special Educational Needs The full report is available from the audit commission website at
After working with autistic children and adults for over 25 years, today I go into Whitefield Schools and
The main findings of the report are as follows:
Centre (a large special needs school in North London which caters for children with many differentspecial needs including chidren on the autistic continuim) for the last time, as I retire from my post as
Family Support Teacher. I don’t know whether I am sad or excited. Sad at leaving all my friends and
Children with special educational needs (SEN) have remained a low profile group, despite the
colleagues or excited at the beginning of my new life as a retired lady!!
One in five children in England and Wales (1.9 million) has SEN but only one in 30 (275,000) has
Today is also the last day at school for 6 young autistic people who I have seen grow up over the last 15
a ‘statement’ setting out the specific provision they require.
years, from little children who didn’t have much idea of what was going on around them - to the upright
Early intervention can make a great difference, but it has yet to become the norm.
teenagers confidently going up to receive their records of achievement. I didn’t teach the children but I
Spending on children with statements absorbs 69% of SEN budgets, leaving little scope for wider
did work with their parents - finding ways to help their children develop and generalise their newly
learned skills from the school environment into the home and the world outside.
Arrangements for funding SEN provision in early years settings remain incoherent and piecemeal.
Parents of children with SEN often have difficulty with school admissions.
The achievement of their children is not just down to the teachers and education. Children spend most of
Over two-thirds of children with statements are educated in mainstream schools, but many parents
their life out of school so much of the credit must go to those parents that kept up the expectations that
feel that their choice is limited by a lack of suitable provision and by unwelcoming attitudes in
their child could make progress by helping them on the way with practical and
functional experiences. Yes, even going to McDonalds and eventually placing their own order is a big
Schools also need to be supported in seeking to meet a wider range of needs.
achievement for many on the long road to independence.
LEA inclusion strategies should set out a clear timetable for developing the capacity ofmainstream schools – and the role of special schools in supporting this transition.
These young people leaving school today all know where they are going – who they are going to meet
Schools, LEAs and Government need to take action to build staff skills and confidence in working
and what they will be doing. School Staff, Parents and Social Services have all worked together to make
sure everything falls into place at the end of their last term - not an easy task at all. But working together
Schools have struggled to balance pressures to raise standards of attainment and become more
is the key – everyone’s contribution contributes to the success of the transition - in this case - 6 young
inclusive as national targets and performance tables fail to reflect the achievements of many
children going out into the world well equipped to continue their life experiences with developing
confidence and independence. I wish them and all other school leavers well in their future.
Government should establish clear expectations of the advice and support that health and socialservices should provide – four-fifths of LEAs reported shortages.
But what about me? Well I am going to put my feet up - for a few hours anyway - too much freedom
Schools have struggled to balance pressures to raise standards of attainment and become more
calls - freedom to visit old friends - freedom to sit in the woods and paint pictures and still a little bit of
freedom to come and work with people at Autism London and look forward to the new staff coming to
National targets and performance tables fail to reflect the achievements of many children with
SEN – so inclusive schools may appear to perform badly. Jenny Lushington (Family Support Teacher - Retired)
Little is known about how well children with SEN achieve in school.
A lack of systematic monitoring by schools and LEAs makes it difficult to recognise goodpractice – or to challenge poor practice.
Government needs to create new systems for recognising and celebrating school’s work on SEN –such as raising its profile in school inspection and flagship initiatives, or introducing awards forinclusive practice.
To achieve real and sustainable improvements for children with SEN, we need to reflect theirinterests in every aspect of education policy – from initial teacher training through to theinspection judgements made of schools. SEN must truly become a mainstream issue – and apriority for all. Report taken from NASEN website: . Printed copies may be obtained by phoning: 0800 502030. Autism London is a company limited by guarantee, registered in England no. 2669072. Registered charity no. 1009720 Autism London is a company limited by guarantee, registered in England no. 2669072. Registered charity no. 1009720
thousands" of children (p. 25). Most UK readers, of course, will be more interested in what ishappening on this side of the Atlantic. I will therefore mention that a fact sheet headed "Briefing onMercury and Autism", which I have recently obtained from the National Autistic Society states, amongother things, that heavy metal mercury is one of the "most toxic substances on earth", that the 75symptoms of mercury poisoning parallel those of autism and that, although in this country the use of
………………………………………….By Louis Baworowski
mercury is less widespread than in the US, the childhood vaccines which do contain mercury includeDPT and the DT (diphtheria and tetanus) preschool booster. The fact sheet adds that mercury exposure
Louis Baworowski's career has included social work, academic research and journalism. For several
can also occur through "maternal consumption of contaminated fish, dental amalgams, its use in
years, he also worked as a volunteer writer for the National Autistic Society, preparing abstracts(summaries) of scientific and general articles on ASD for the Society's database. He is the father of
antibiotics and other medications, and the anti D vaccinations given to mothers during pregnancy or just
Osian, a 22 year-old with autism. The aim of this regular column is to cover works of interest to
readers of Autism London Bulletin irrespective of publication date. Where non UK-English spellingsappear in titles or quoted extracts, it is due to the spellings employed in the relevant source material.
Many children with autism, Dr. McCandless tells us, have been found to have autoantibodies to a centralnervous system protein called myelin basic protein (MBP). "Nerves can only conduct pulses of energyefficiently when properly sheathed with myelin. Like insulation on an electric wire…when the immune
J. McCandless, MD, Children with Starving Brains: A Medical Treatment
system attacks the body's own myelin, 'short circuits' can occur within the brain. Nerve axons [fibres that
Guide for Autism Spectrum Disorder (Paterson, New Jersey, USA: Bramble
send impulses from one nerve cell to another] cease to function properly" (ps. 28-29). Nevertheless,
Books, 2nd Edition, 2003) ISBN 188364710X
autoimmune activity is not the only or even the dominant theme of this book. The author states that"…the end point for most autism spectrum children is a malnourished brain that can result from a variety
The main authors of the two books I review in this issue are both doctors. While differing in scope, they
of etiologies [causes]" (p. xiv). This is not simply because "ASD children typically have very poor diets"
agree upon the determining role of biomedical processes in the causation of autism. Dr. McCandless, who
through faddish self-restriction and other reasons, such as hydrogenation in modern food processing (ps.
is herself the grandmother of a girl with ASD, maintains that the overwhelming majority of children with
6-7 and 82). It is because "…toxins in the brain, whether they are heavy metals, viruses or other
autism are "physically ill…with real medical disorders. Since they are physically ill, they need
pathogens, set up conditions that prevent nutrients from gaining entry into brain cells even if the gut
biomedical intervention to maximize their healing potential" (p. 4). What is being asserted is not simply
problems allow some nourishment to reach the brain" (p. 35).
that such children have chronic – though often hidden or "subclinical" – infections and ailments, butrather that these problems form part of the underlying physiology of autism itself. At the same time,
The author states that nearly every child she has worked with has had "immune irregularities, nutritional
although Dr. McCandless' focus is on biological processes and treatments, she does make clear that
deficiencies, and gastrointestinal problems" (p. 5). 60-70% of the immune system is located within the
behavioural approaches (forms of teaching and training that include Applied Behavioural Analysis)
intestinal tract and "…in autism the gut and brain are connected" (ps. 89 and 108). Yeast-generated toxins
should be used alongside the biological approaches if progress is to be optimised (ps. 159-160).
contribute to what is known as the "leaky gut" syndrome, by literally drilling holes in the intestinal walland seeping into the child's bloodstream. "Ultimately the toxic substances may inflame or cross the
At the broadest level, the picture we get is of a causal connection between what is described as an ASD
blood/brain barrier and, by interfering with the flow of nutrients to the brain, impair consciousness,
epidemic and the nature and practices of our "advanced" technological societies. Our environment is
cognition, speech, or behavior" (p. 45). A leaky gut can also result in other problems. During normal
highly toxic, awash with lead, mercury, polychlorinated biphenyls (PCBs) and organophosphate
digestion, proteins are broken down into short chains of amino acids called peptides. These should remain
pesticides. Children with ASD are portrayed as the "canaries in the mines of our culture…messengers
in the intestine until digested further. A permeable gut, however, can allow peptides derived from casein
reflecting critical unbalances in the ways we live our lives…Miners in the coalfields…often brought a
(a protein found in milk) and gluten (a protein found in wheat and certain other cereals) to get into the
canary down with them as a way to detect methane gas. When the birds stopped singing and began to die,
bloodstream and thence the brain without being dismantled into its constituent amino acids. These
the miners…headed for the surface in a hurry…[autistic children] are letting us know that the food we
peptides, casomorphin and gluteomorphin, have morphine-like or opioid properties "with a potency
eat, the way we dispose of our industrial waste and some of the materials we have used in agriculture,
several times that of morphine" (p. 46). They "…seem to drug the children and interfere with
dentistry and vaccines are not safe" (ps. 195 and 225). Children with Starving Brains is not, however, a
motivation, emotions, perception, response" blocking normal nerve signal transmission and causing
work of ecology. It is a genuine and practical medical treatment guide, written for both parents and
children to appear spaced-out (ps. 46 and 90).
physicians (p. 8), giving precise information about tests and treatments. It can be read with a sense of realdiscovery. For many, its account of autism in terms of processes linking the immune and gastrointestinal
While ideally a child should be diagnosed and begin treatment between 18 months and five years of age
system with the brain will open a major avenue to understanding.
(in common with all experts Dr. McCandless stresses the value of an early start) older children and evenadults can also be helped, "some remarkably so" (p. 10).
Dr. McCandless believes that there is no single scenario that accounts for "autism in general" nor is therenecessarily a genetic susceptibility in every individual case (ps. 188 and 21). However, she does think
Each person has his own individual profile and treatment must be specific to that person, though the
that early, even in utero or neonatal injury, to the immature immune systems by toxins or disease-causing
"underlying disease processes of this complex disorder" do fall into subgroups (ps. xvi, 5 and 37). Dr.
agents (pathogens) starts a series of biochemical events culminating in neurocognitive deficits (p. 10).
McCandless' approach is to begin with an evaluation that includes laboratory tests. Gluten and casein-freediets are usually beneficial (p. 91). Yeast overgrowth problems in the gut may be combated with
These events "overburden underdeveloped or just developing immune systems, often causing…[them] to
probiotics and antifungal nutraceuticals (p. 32). The immune system may be strengthened by providing
turn against their own bodies" in a process known as autoimmune disease (p. 20).
supplemental vitamins, minerals and other nutrients (p. 34). Only when the child is free of
One indication of weakened immunity is a finding that autistic children have ten times more ear
gastrointestinal overgrowth, can heavy metal accumulation in the body be tackled by a process known as
infections during the first three years of life than normal children (ps. 43 and 53-54). In the US, the
chelation (p. 142). This usually involves taking DMSA (dimercaptosuccinic acid) and ALA (alpha-lipoic
practice of inoculating the newly born with the hepatitis B vaccination, which until 2001 contained
acid) which bind heavy metals and enable them to be passed out of the body (ps. 139 and 147).
Thimerosal, a substance that is 49.6% ethylmercury by weight, may have affected "thousands upon
Autism London is a company limited by guarantee, registered in England no. 2669072. Registered charity no. 1009720 Autism London is a company limited by guarantee, registered in England no. 2669072. Registered charity no. 1009720
As for viruses, these are difficult to treat but part of Dr. McCandless' strategy is to reduce the body's toxicload, with a view to encouraging the patient's own immune system to do its work; some 30% of ASDchildren respond well to the antivirals acyclovir or Valtrex (ps. 30 and 29).
A certain percentage of children treated biomedically make "wonderful progress, and have even lost theirdiagnosis as autistic"; a larger percentage make major progress and a small group make little or noprogress (p. 73). There is no way of predicting how much, if any, improvement will occur in anindividual case (p. 68). Diagnostics and treatments are "neither easy nor quick" and detoxification maytake six months to two years, or even longer for older children (ps. 68 and 152). Some measures, forinstance gluten-
and casein-free diets, can be taken by parents without medical involvement, but
chelation is not one of them (ps. 91 and 104). There is a shortage of knowledgeable doctors; parents whohave read about or studied biomedical treatment options "may know more than their family doctor orpediatrician, whose views about autism are likely to have been formed in medical schools…parents mustbecome not only their children's educational advocates but their medical advocates as well" (ps. 102-103). S. B. Edelson, MD and D. Mitchell, What Your Doctor May Not Tell You about Autoimmune Disorders (New York: Warner Books, 2003) ISBN 0446679240
Dr. McCandless' and Dr. Edelson's orientations have much in common and there is a lot to be said forreading their works one after the other. In places, Dr. McCandless' book is by far the more demanding inits vocabulary and expression of ideas. However, it is wholly about autism and gives enough informationto provide the ordinary reader with a rare (perhaps even infectious!) chance to experience something ofwhat it's like to "think like a doctor" – which, I need hardly emphasise, is not the same as having all theevidence needed to arrive at a position of certainty on every issue. Dr. Edelson's writing is far moreobviously and consistently tailored for a popular readership; it is extremely well structured and ofexemplary clarity.
Autism features in Dr. Edelson's book as just one of a group of autoimmune disorders. Though hedevotes only one chapter specifically to it, this is not to say that whole of the rest of the book is about"something else". If Dr. Edelson is right in his views, then several of the other chapters in his book arealso crucially relevant. These include the one entitled "What is Autoimmunity", as well as the chapters onbiodetoxification, nutritional therapies, and immunotherapy. There are over 80 known autoimmuneconditions (p. xi). We have already seen that autoimmunity plays a part in Dr. McCandless' thinkingabout ASD: in the case of Dr. Edelson it is the whole story. An autoimmune response involvesautoantibodies attacking healthy cells (p. 9). Dr. Edelson believes that it is the combination of geneticsand toxins taken together that cause autism (p. 62). He considers that "there is overwhelming evidence,that autism is associated with heavy metal and chemical toxicity, and that those environmental poisonstrigger autoimmunity" (p. 59). Autism London is a company limited by guarantee, registered in England no. 2669072. Registered charity no. 1009720
AIDS InfoNet www.aidsinfonet.org Fact Sheet Number 611 PREGNANCY AND HIV Note: HIV transmission statistics in this fact load (see Fact Sheet 125) under 1,000, the reduce the future treatment options for the sheet are from a 2005 publication of the risk is almost zero. Mothers with a high viral United Nations Joint Programme on load might reduce their risk if they d
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