support document

People with autism should share the same rights and privileges enjoyed by all of the European population where such are appropriate and in the best interests of the person with autism.

These rights should be enhanced, protected and enforced by appropriate legislation in each state.

The United Nations declaration on the Rights of Mentally Retarded Persons (1971) and the Rights of Handicapped Persons (1975) and other relevant declarations on human rights should be considered and, in particular, for people with autism, the rights detailed in these schedules should be included.

Over the years there have been a number of declarations, charters and bills of rights drawn up on behalf of people with disabilities. Although their intentions are clear and the spirit and sentiments are to be applauded, none of them have addressed all of the particular range of problems presented by autism. The Nation States affiliated to the United Nations and to the European Union have agreed to support these statements and thereby have pledged to incorporate them into their legislative programme.

If this had happened, this Charter would be unnecessary. However most, if not all states, while accepting the principle of these statements, have failed to adjust their legislation appropriately and completely failed to make available the range of provisions or deliver a quality of service which acceptance of these statements would entail. Acceptance of a range of principles is simple and most states would claim to do so and to uphold the requirements. However, no state currently provides a fully satisfactory service.

These schedules are designed to explain precisely what is meant by the Charter and what is acceptance entails. It attempts to set out concrete examples by which compliance with the various clauses of the Charter may be evaluated. The precise mode of implementation of these basic rights will change as our understanding of autism, our development of newer techniques and therapies, our opinion of what constitutes best practice and the underlying values and standards of society develop.

These schedules will be reviewed and updated regularly but the principles enshrined in the Charter of Rights will remain.

1. THE RIGHT of people with autism to live independent and full lives to the limit of their potential.

This is the basic right of all human beings in a civilised society. All the other requirements which follow are means towards obtaining this substantial yet basic human right.

The consequences of being born with a disability of any sort should not include the removal, dilution or debasement of those rights enjoyed by all fellow members of society rather these rights and privileges should be extended and enhanced in other to ensure that the person with autism's potential is not crushed by ignorance, fear, callousness or prejudice.

2. THE RIGHT of people with autism to an accessible, unbiased and accurate clinical diagnosis and assessment.

The importance of an accurate diagnosis cannot be over-emphasised. Without such a diagnosis it is unlikely that services appropriate to the particular needs of the person with autism can be provided or maintained.

The diagnosis should be based upon the criteria accepted throughout the greater part of the world as the most reliable and accurate. Although minor variations in detail are acceptable, they are currently those described in the 4th edition of the Diagnostic and Statistical Manual of the American Psychiatric Association. Any diagnostic classification must ensure the acceptance of autism as a long-term handicap rather than a result of psychological insult or temporary psychosis.

The diagnosis should be carried out by competent agencies familiar with a wide range of psychiatric disorders including autism.

The diagnosis should be performed by an agency which has no vested interest in the outcome of the diagnostic procedures.

The results of such diagnoses should be conveyed to the person afflicted where appropriate and/or their closest relatives or those responsible for their care.

3. THE RIGHT of people with autism to accessible and appropriate education.

Although some of their difficulties experienced by people with autism are shared by those with other forms of disabilities, there are particular difficulties inherent in the autism which require understanding and specialised educational techniques which are not generally available in generic educational environments. Each individual person with autism should be assessed by experienced educationalists and own particular needs determined. In order to avoid the possibility of vested interests influencing decisions this assessment should, wherever possible or appropriate, involve a substantial input from those not directly associated with service providing agencies.

A personalised package should be designed to fit the needs of the individual. This could include full integration into normal school systems possibly with special programmes. In any case, teachers should be aware of the particular needs of the individual and their family. The range of available options should include the possibility of special classes or schools for people with autism with, in situations where it is required, residential facilities. The personalised programme could well include elements providing a variety of experiences to suit the needs of the individual. In the design of any personalised plan, the use of the last restrictive environment possible should be a primary consideration.

Particular attention should be given to pre-school age children since the benefits of tuition at this stage are generally considered to be of special importance.

Parents and other family members should be partners and actively involved in the education programme since evidence suggests that such participation is particularly beneficial in autism.

The progress of each child should be constantly monitored against set criteria. Where a particular therapy is proving effective, it should be pursued; where progress is disappointing the therapy should be discontinued and replaced by dogmatic principles.

The provision of adequate educational facilities should not place a severe financial burden on the families involved. The situation varies between countries but in those countries where the custom is for education to be free, people with autism and their families should expect the same rights. In those countries where other systems prevail the system of payment should be no less favourable than applied when children without disabilities are considered.

4. THE RIGHT of people with autism and their representatives to be involved in all decisions affecting their future; the wishes of the individual must be, as far as possible, ascertained and respected.

People with autism have a particular difficulty in making decisions. This is the result of a) not being able to envisage the consequences of decisions which are made and b) not being able to express their views or opinions.

Consequently, it is tempting for those having responsibility for the implementation of services to make the decisions on behalf of the person with autism and the person for whom the service is provide is left frustrated and disappointed at decisions made in his or her name. People with autism do not always make a fuss or react violently to suggestions made to them acquiescence should not be taken as agreement with decisions taken in their name.

No effort should be spared in explaining the options available even though this may be time consuming and the explanation, perhaps, unintelligible to the subject. No attempt should be made, by the enquirer, to obtain particular responses by deception or by the omission of significant details. Exploiting the vulnerability of people with autism by allowing them to express an opinion based upon false, incomplete or inadequate information is worse than allowing no choice at all.

Even those people with the severest forms of handicap can usually make their preferences evident. Even when unable to verbalise, their behaviour, equanimity, pleasure or distaste are easily observed and their preferences determinable by those who know and understand them. When and only when, it remains impossible to determine the wishes of individuals concerned, the person's relatives, cares, advocates and friends, (particularly those suffering from autism) may need to be consulted.

Even when the person with autism is believed to be incapable of understanding proceedings where decisions may be taken which affect them directly, they should be present during that discussion. Their physical presence will help to focus the minds on the subject of discussion and will expose and minimise comment which undermines the dignity and humanity of the individual.

It is recognised that it may not be in the best interests of the person with autism that all his/her wishes be acceded to but where such wishes, expressed or not, are over-ruled explanations should be provided.

All records of agreements, statements and minutes from such meetings should be subject to the approval of the person with autism and/or their representatives.

5. THE RIGHT of people with autism to accessible and suitable housing

Satisfactory housing is a basic requirement for any form of civilised life. The person with autism will be unable to obtain housing or go pay an economic rate for it without the support of others. Such help as is required should be available from the public authorities.

The type of housing provided should be commensurate with the needs, abilities and, as far as possible, the wishes of the individual concerned. It should not be remote and isolated from society but should, as far as practicable, be in an area where support from family and friends is impossible. The type of housing should correspond, in quality, with that available to the rest of the population. Multiple occupancy of bedrooms or a ward structure where toilet and personal hygiene facilities are shared by many would not be considered suitable housing. All forms of housing should be the least restrictive possible given the needs and the safety of the individuals concerned.

6. THE RIGHT of people with autism to the equipment, assistance and support services necessary to live a fully productive life with dignity and independence.

The provision of appropriate housing is but the first requisite in the creation of a satisfactory environment for people with autism. The facilities within the home should satisfy the same regulatory and safety standards as are required in normal housing. In any group situation, the facilities should permit withdrawal from other members of the group when requested by the individual. Furniture, furnishings, equipment and consumables should be non-institutional in design and should encourage the expression of individual preferences and interests.

People with autism should be encouraged to take a proper pride in their appearance. Clothing should be of the type and quality available to the normal population. The provision of old, second-hand, old-fashioned or uniform clothing is degrading and stigmatising to the individual. Parents and cares must be conscious of the possibility of enforcing their own standards of dress upon children with autism when such styles are inappropriate and would attract negative attention. The same considerations would apply in other areas such as hair styles, make-up or ornamentation.

People with autism always need a degree of continuous support. In some cases this support may need to be only at arms length where the mere knowledge that support is available is sufficient encouragement for the person with autism. For the vast majority considerable support will be required and should be available at an appropriate level. Such support should not take the form of merely caring for the individual by feeding, cleaning and assuming responsibility for all decisions. The support should be designed to encourage independence in the individual by helping him or her to take responsibility in these areas. Although it is not always evident, people with autism do take pride in their appearance, their achievements, skills and independence. Developments in all these areas lead to an increase in the confidence and dignity of each person.