It is universally accepted that no country in the world currently provides services which are either sufficiently varied to cater for all the multifarious needs of people with autism or which are extensive enough to cope with the large numbers of people requiring such services. For many years the treatment and care of people with autism, as with all mental handicaps, has been less than adequate and remains, in many respects, barbaric. If the treatment handed out to people with mental handicaps is an indication of the degree of civilisation then the claim of Europe to be one of the cradles of civilisation must be severely questioned.

The time when people with autism, along with those with other forms of disabilities, can be pushed out of sight are past yet it still appears that our friends with autism are at the back of the queue when resources for services are handed out. We have to await the better times around the corner when the economic climate improves and money becomes available. It is no longer acceptable to await the crumbs which fall from the tables of the government or "the rich".

However, we must accept the position as it is. As Associations fighting on behalf of people with autism it may not be in our best interests to campaign overtly for political change. Indeed, if we were to do so we would lose the benefits of charitable status in many countries of the European Community. Quite clearly we must work within the system and attempt to obtain the services which we believe to be appropriate with whatever means are available to us. There are steps which we can take and arguments which we could advance and it is upon these that I wish to focus.

Assets
Our main strength is our weakness. The people who we represent are unable to speak for themselves and it is our privilege and duty to speak on their behalf. We must be able to make use of this weakness. As a parent of a 25 year old man with autism I will admit to having regularly taken him with me when having meetings with officials or representatives from whom some service is required. It is much more difficult to say no when the affected individual is physically present. This principle should be adapted for use in dealings on a larger scale.

In the same way, when we are seeking improvements in provision, we should make use of the fact that is not good politics to be seen to be the person who denies people with handicaps their share of the cake. Politicians are, quite naturally, sensitive about appearing in the newspapers and being identified as presenting a case against people with handicaps. However, we cannot demand progress by blackmail alone. We must present our case in the most effective way and to do this we must make use of our political representatives and policy makers.

Use of Politicians
Contrary to public opinion, the politicians who are responsible for the policies under which we operate are not all rogues. I am confident that the vast majority subject themselves to periodic abuse at election time in the belief that they can improve the lot of their fellow citizens.

Politicians are the professionals in pressing for policy change but they still require our assistance if they are to be effective. We must provide them with the weaponry to work on our behalf. If we are to utilise them as our front line troops we cannot expect them to sally forth without bullets.

A politician has one aim in life and that is to attract attention and to look good to his or her colleagues and to the newspapers. Although they are the experts they still require their weaponry which consists of factual information.

Two types of information are required.
1. The precise identify and definition of the nature and extent of the problem;
2. The answers to the problems;
In addition they require the support of knowing that these answers are reasonable.
3. To show that the solutions proposed are economically viable.

If, as we claim, we are the experts on autism then we should be providing the answers as well as pointing out the deficiencies. It is up to us to decide what we want and what is appropriate for those in our care and then to press for it with the utmost vigour. In order to illustrate some of the points I have chosen examples of current interest in Great Britain. I apologise for this because I know from discussions with my colleagues that there are equally good examples of issues in other countries but it is discourteous to criticise practices in other countries our own practices are so far from perfect.

In the United Kingdom there is currently a serious discussion and debate about the possible abuse of people in care. Therapies or practices which were routine a few years ago are now, in the 1990s, no longer acceptable and considered to constitute "assault" in the legal sense. There are instances around the country where staff dealing with people with mental handicaps (not just autism) have been threatened with charges of assault on people in their care. Staff are, quite frankly, paralysed and scared to do anything as they are unsure what exactly constitutes assault in the legal sense. My own feeling is that the Police and the newspapers are not the appropriate agencies to determine the acceptability or otherwise of the restraint methods which should be applied to people with autism.

Parents and professionals who are close to autism are only too well aware, in a way that the Police are not, that there are occasions when some form of restraint is appropriate. It is up to us, collectively to agree on acceptable methods and to press for their adoption.

Presentation of the Case
a) "One Voice" Once we have decided what we want we must then speak with one voice. How can we expect politicians or any policy makers to take us seriously or fight our battles for us when we are all demanding different things. I have no data to support this theory but, as I look around Europe, it does seem to me that it is no coincidence that the best and most numerous facilities exist in those countries where those representing autism speak from a position of strength with a single voice.

b) Accurate Information We must ensure that the bullets which we supply to our politicians, the information we supply, is accurate. We cannot supply guns which will not fire or information which will not stand up to close scrutiny or which will blow up in the face of the politician who is pressing our case. Sometimes, however, it is no easy matter to determine the facts.

There are many examples which could be examined but unfortunately the limited time available precludes detailed coverage of more than one aspect. I wish to briefly mention the position of people with autism currently in long-term psychiatric institutions. I have been attempting, for some months now, to determine the financial implications for the government of the United Kingdom in removing people with autism from the long stay hospitals, where many still exist, back into the community. In order to speed up this integration programme it is necessary to find out exactly how much money is required. We know pretty accurately how much it costs for such "Care in the Community" initiatives. In the UK the cost for a community based placement, 365 days a year, 24 hours a day was (in 1991) around £30,000. It has been extremely difficult to determine a comparative cost for a long stay psychiatric hospital. Figures anywhere between £19,000 and £80,000, depending upon the problems presented by the individual, have been quoted. The most recent figure I have been able to obtain for long-term in-patient care (that is residence) in a psychiatric hospital was (for the year 1989/90) £24,800 per annum. Given the rate of inflation over the past few years this would equate to a cost per head for the last year (1991) of around £29,000 per annum. Since many of our people with autism are often some of the more difficult patients my own estimate, and I have no other data to support this, would suggest that on an individual basis their costs would be a little higher than this.

I have consulted with my colleagues in other countries in Europe and similar figures have been quoted by them. It would seem, therefore, that it would be no more expensive for people with autism, currently treated as hospitalized patients, to enjoy the benefits of citizenship in appropriate facilities in the community. It is not our responsibility to beg for resources to encourage integration of people with autism into the Community. Given these circumstances it is our governments who must justify the expenditure of large amounts of tax payers' money on the unnecessary and inappropriate incarceration of people in large impersonal institutions. It is surely relevant that in some parts of the world, notably New York State in the USA, the hospitalisation of people with mental handicaps in psychiatric institutions is actually illegal.

An added bonus with this example is that the statistics come, almost exclusively from the governments own publications. Such figures are extremely difficult to track down but it can often be done.

Spectrum of Services
A couple of years ago we conducted a survey into what parents wanted for their children with autism or other mental handicaps. The majority wished to keep their children, of whatever age, at home for as long as possible even though they recognised that there would come a time when their age would make this difficult and hospitalization of the person with autism would become the only option. There is no doubt that there are a large number of people with autism currently in hospitals who could be in their homes provided parents received support much more than at present.

Currently, throughout much of Europe, a stark choice faces parents of children with autism. Either institutionalisation of the child (or adult) or the disruption of normal home life. Given support in terms of advice, adequate day and respite facilities, as has been demonstrated in some countries in Europe, some people with autism could thrive in the family home and avoid expensive hospitalisation.

The European Dimension
Although we have had some successes in our various countries there is still much that needs to be done. Many of our aims and objectives are probably best approached from a European perspective. Our National governments are not always noted for their vision or long term strategies. They are influenced much more by measures which increase their electability. Autism does not feature highly on their programmes. The European Community is able to adopt the moral high ground without necessarily having to fund or develop the structures and services itself. The European Community has been notably successful in such as environmental issues where it can set standards for the purity of water, or the use of growth promoters in animals and National governments are obliged ultimately to accede to these requirements.

The requirements of people with autism are the same wherever they live, in Ireland, Italy, Portugal or Poland and it is up to us to define these requirements and to press for their adoption. These requirements are listed in the Charter which is to be presented later on this morning. Once these principles have been accepted within the Community it will be up to National governments to implement these basic standards by incorporating them into their own systems.

We must press to ensure that these rights are enshrined in legislation in our own countries. The acceptance by Autism Europe of this Charter does give us a concrete set of standards by which services can be compared. If we can get official endorsement by the EC this will strengthen our hand considerably.

When one looks through the various European Community initiatives which have been established to assist people with disabilities of all sorts one must be impressed. The ideals and intentions which inspire them are praiseworthy and the schemes appear well thought out and with a sort of logic. It is when it comes to precisely how money is spent that difficulties seem to arise. The interface between the European Community and National Agencies seems to be a particularly difficult one. The British are not alone in harbouring doubts about the way European moneys would be spent if their governments had control of its allocation. The suspicion exists that governments are using such European allocations to subsidise their own activities rather than initiate new projects.

Monitoring
Even when legislation is in position it is up to us to ensure that it is implimented. Another example from Great Britain I am afraid but I am confident that examples could be found in all our countries. Under an Act of 1944, companies over a certain size are required to employ a quota of people with disabilities which may be physical or mental in nature. The Act remains on our statute books and is often quoted. It is very largely ignored by companies but if found guilty of not having their quote they can be fined a maximum of £100. This has remained unchanged for approaching 50 years now but, in any case, nobody has been prosecuted since 1975. Any company can apply for an exemption to this requirement: if a company forgets to send in its application for exemption, the government sends it a reminder. What earthly use is such legislation? There is separate legislation in Britain which outlaws sexual discrimination and racial discrimination. In the last ten years there have been 9 attempts to get anti discrimination against people with disabilities legislation through parliament, the most recent was earlier this year. In spite of a great deal of support from individual members of parliament of all parties, it has never attracted official government support. I find it difficult to accept that because a person is very vulnerable on account of their autism, they should lose the rights enjoyed by all other citizens.

Such legislation in our own states would inevitably follow if a lead were given by our own European parliamentarians. Let us hope that our charter will be a prelude to action in our European Parliament.