| An Introduction to the Organisation | Aims, Objectives & Activities |
What is Autism?| How You Can Get Involved Autism Morning Lecture 2002 –
AUTISM  YEAR  2002.

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The International AUTISTIC Research Organisation


An Introduction to the Organisation by our Director/Secretary/Founder
Gerda IM McCarthy


AUTISM is a dysfunction of the brain, the cause of which seems to be genetic. The area in the brain which we noted with a SPET (Single Photon Emission Tomography) scan investigation through my initiation and under the guidance of Professor Mark S George MD et al, are mainly in the right lateral temporal and right, left and mid-frontal lobes.

 

The cerebellum, which is the hind brain is also abnormal in AUTISTIC cases; this revelation was previously seen by researchers, Professors Margaret Bauman MD, Thomas L Kemper MD, Eric Courchesne MD, et al. AUTISM may be caused by brain damage in some cases, but in most individuals it is determined right from the day of conception. An abnormal cell structure seems to occur as the baby develops, resulting in abnormal circuiting in the brain throughout life, i.e. in the areas of the brain already mentioned and possibly in other parts still need to be discovered. Evidence is also found that the corpus collosum in AUTISM is reduced in size and the parietal lobes are abnormal, M.S. Brian Eggas et al 1995.

 

AUTISM  is characterized by impairments in reciprocal social interaction and communication, and restricted and stereotyped patterns of interest and activities.  The genetics of this disorder is complex, probably involving the action of several genes.  A two stage genome project has been recently completed by the International Molecular Genetic Study in  AUTISM   (IMGSA).  A region on chromosome 7q provided the most significant result with a maximum multipoint lod score  (MLS)  of 2.5.  Five additional regions on chromosomes 4,10,16,19,22 provided an  MLS>1.  (IMGSA,  cca. 1999.)

 

In 2000 multiple adjoining genetic markers were seen (a genome-wide significant level,  P=0.038), a susceptibility region, which is missed with conventional approaches. (J. Ott et al).

 

Last year, 2001, a second gene was discovered in Rome that may increase the risk of a child developing  AUTISM   three fold.  The gene that produces  protein reelin  has srecently been associated with the bipolar disorder and schizophrenia.

 

Back in 1995, a positive associaton between AUTISM   and two c-Harvey-Ras  (HRAS)  genes were documented by Josianne Herault et al.

 

In 2000 multiples adjoining genetic markers were seen (a genome-wide significant level, p=0.38), a susceptibility region, which is missed with conventional approaches. (J.Ott et al.)

 

In 2001, a second gene was discovered in Rome that may increase the risk of a child developing  AUTISM   three fold.  The gene that produces protein reelin has recently also been associated with the bipolar disorder and schizophrenia.

When the human genome project reaches its completion, many more questions may well be answered in connection with the  AUTISM  SPECTRUM  DISORDERS.

 

AUTISM  is more prevalent than had previously been thought.  According to recent reviews, there appears fairly good agreement  that the  AUTISM  SPECTRUM  DISORDERS  affect approximately 60, and narrowly-defined  AUTISM  10-30, per 10,000 children under 8.  The prevalence of  AUTISM  among adult populations is not known. These estimates make  AUTISM  SPECTRUM  DISORDERS  far more common than generally recognised. (MRC-2001).  

 

Since the recognition  of  AUTISM  in 1943 by Leo Kanner in the  U.S.A.  and the  ASPERGER  SYNDROME,  HIGH  FUNCTIONING  AUTISM,  classified as  ATYPICAL  AUTISM  (DSM-IV,  1994) by Hans Asperger in 1944 and  CHILDHOOD  DISINTEGRATIVE  DISORDER  (CDC)/HELLER’S  SYNDROME/LATE  ONSET  OF  AUTISM  first mentioned by Theodor Heller, a Viennese educator, in 1908, scientific endeavours in the 1990’s have led us nearer towards the possible causes of  AUTISM,  however, there is still a great deal of work to be done to reach the ultimate goal.   

 

AUTISM   can occur in all classes and races, and also in mixed raced families.

 

Although  AUTISTIC   children/adults often look healthy and attractive, their visual and auditory concept is distorted, hence they are not able to make sense of the world around them. This gives rise to their inability to communicate with their peers, parents, and other people, such as difficulties to recognise or show facial expressions, gestures, or even notice a change in someone's tone of voice. Problems with feeding or toilet training are also common. Many AUTISTIC individuals also exhibit unusual behaviour, such as head banging, rocking, strange ritualistic and repetitive behaviour.

We are here to encourage and raise funds for research, so that one day we will be able to avoid AUTISM occurring and to be able to treat the condition successfully.

The organisation's logo, showing the two question marks, symbolises the eagerly awaited answer by both the Researcher and the AUTIST. The black question mark is the researcher who asks "why do you see the world the way you do ?" The red question mark is the  AUTIST   who asks "why can you not see the world my way ?" The AUTISTIC question mark is upside down indicating a confused world. The red colour indicates the urgency for research to help the AUTIST to emerge out of a confused world.

If the question marks are switched the other way, the confused world seen by the AUTIST, certainly seems normal to him\her, but the individual who is not afflicted with AUTISM certainly seems very different to the  AUTIST.

The incentive to create a charity for encouraging research into AUTISM sprang into my mind following the BBC television programme Horizon, based on the enkephalins and endorphins. These peptides - the enkephalins, a short chain of opiate building blocks of protein/amino acids - the endorphins (internal morphines) - are found in our brain and help the body handle pain.

Although the programme shown over twenty years ago did not mention the AUTISTIC condition, I felt that brain chemistry in AUTISM may well be an important area to be pursued. I contacted all the professionals who were interviewed in this programme. All answered kindly but regretting that more research in AUTISM was not undertaken at that time. Eventually I was referred to our medical adviser of today, Professor Edward M Ornitz MD, by one of the professionals who took part in the Horizon programme. Professor Ornitz too emphasised the importance of neurophysiological and biochemical research into AUTISM. Our medical adviser has been a great help, especially his assistance as regards side effects caused by major tranquillisers. He advised us during these early days of possible irreversible neurological impairment that can be caused when these neuroleptics are taken for a long period of time. The impairment is called tardive dyskinesia, a movement disorder. These drugs are known under the heading of Thorazine, Stelazine, Mellaril, Haloperidol, Largactil, etc.

We were only a small group of parents at that time which became a registered charity in 1981 under the name of "Research Group Fund for Autists".

In 1984 Dr David F Horrobin MA, DPhil, BM, BCh of Scotia Pharmaceuticals UK/Canada made findings of abnormal essential fatty acids in individuals with AUTISM.

We liaised with several professionals and parents overseas and soon realised that we were no longer a group but an organisation. By 1986 we were known as "The INTERNATIONAL AUTISTIC RESEARCH ORGANISATION".

As the organisation continued to grow it became a company in 1990 under the name of "AUTISM Research Ltd" with "THE INTERNATIONAL AUTISTIC RESEARCH ORGANISATION" as its flag name. At the end of 1990 I initiated a SPET scan study on five of our AUTISTIC adult members under the guidance of Professor Mark S George MD, et al at the Middlesex Hospital in London. We were only too delighted to inform our members by June 1991 that this particular project revealed a finding in AUTISM. The revelation "Cerebral Blood Flow Abnormalities in Adults with Infantile AUTISM", these findings, NEVER SEEN BEFORE were included in the publication of Neuroactivation and Neuroimaging by MS George, HA Ring, DC Costa, PJ Ell, K Kouris and PH Jarritt published by Springer-Verlag, London, Berlin, Heidelberg, New York, Paris, Tokyo, Hong Kong, Barcelona, Budapest. A year later, in 1992, the article Cerebral Blood Flow Abnormalities in Adults with Infantile AUTISM appeared in The Journal of Nervous and Mental Diseases, Maryland USA for which we assisted with a colour illustration of the findings. The article was written by the same authors, as mentioned above.

The new technology of high resolution brain single photon emission tomograpghy (SPET) was used. Prior to the investigation, our AUTISTIC members were given an intravenous injection (average 10Bq/kg) of 99 Tcm-HMPAO while sitting with their eyes open without talking in a quiet room. They were scanned 15 minutes later, and it was noted that the total perfusion was significantly decreased in all of our AUTISTIC subjects. In addition to the globally decreased perfusion, our AUTISM group also had regionally decreased flow in the right lateral temporal and right, left and mid frontal lobes compared to controls.

In 1992, the organisation was in a position to make a £14,000 grant for an AUTISM service and for research by supporting Dr Vanessa Moore, Research Psychologist at Southampton General Hospital, under Dr Christopher J Rolles of the hospital's Paediatric Unit.

Among the very important tasks dealt with, Dr Moore established an assessment database to collate information, setting standards for diagnosis and comparisons for scoring systems.

This is just one example of the work which is carried out. There is, of course, a tremendous amount of co-operation not just between researchers and experts in the UK but also worldwide. In all the work we have done and will continue to do, we are privileged to have the household names of Lesley Garrett and Luciano Pavarotti as our patrons

Scientific endeavours in the 1990’s and the beginning  of the New Millennium have led us nearer towards the possible causes of  AUTISM; however, there is still a great deal of work to be done to reach the ultimate goal.

 

RESEARCH  IN  AUTISM  IS  VERY  IMPORTANT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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C  Copy Right.


Contact Details:
The International AUTISTIC Research Organisation, 49 Orchard Avenue, Shirley, Croydon, CR0 7NE, United Kingdom
Tel : (+44) (0)20 8777 0095 Fax : (+44)(0)208776 2362 Email : iaro@autismresearchww.freeserve.co.uk
Registered Charity No.: 802391 Company No.: 2431653
Patrons :
Luciano Pavarotti and Lesley Garrett.