support document

13. THE RIGHT of people with autism of equal access to and use of all facilities, services and activities in the community.

One of our main objectives is to allow and encourage people with autism to take their rightful place in society. Access to all the facilities available to normal society is a prerequisite if such objectives are to become a reality. The barriers which prevent active involvement are largely a result of misunderstanding. On the one hand, the general public have a fear of all forms of disability and need to be reassured, through education and increased awareness, that people with autism will present no threat and can, through their participation, enhance their own enjoyment of any activity. On the other hand parents, carers and the people with autism themselves must accept the challenges which normal life presents. People with autism should not be prevented from attempting activities through over protectiveness or timidity. Experience has shown that, given appropriate encouragement and instruction, people with autism can accomplish much which would, at first sight, appear beyond their competence.

Embarrassment, awkwardness and confusion are less common in the person with autism than in cares, the general public and onlookers. Such responses will only be eradicated through experience, explanation and familiarity.

Without the right to use the range of facilities and services available to the rest of the community all education and training is pointless.

14. THE RIGHT of people with autism to sexual and other relationships, including marriage, without exploitation or coercion.

The rights of people with autism should reflect precisely those available to the rest of the population. They should reflect the legal situation and social customs currently prevalent in the country concerned. These rights should take particular account of and be responsive to the particular nature of the difficulties which autism presents.

Particular attention should be applied to the wishes of the individual. It is sometimes not difficult to persuade a person with autism to voice a certain decision even when it is clearly against their natural inclination. In order to avoid the possibility of coercion through this mechanism, carers should ensure than any participant with autism is aware of the consequences of their decision and actions. Similarly, it may be difficult for a person with autism to enjoy any form of relationship without encouragement and support from carers who are sensitive to the problem of autism.

Many people with autism, particularly those who are more severely afflicted, show little interest in sexual relationships and will consequently show little interest in such activities. Others will show interest but will lack the communicative and social skills necessary to express their interest and desires. Advice and encouragement will almost certainly be necessary for the attainment of successful relationships. The necessary support should be available.

Informed and sensitive advice on birth control and genetic counselling are necessary. Where marriage takes place, the partners should not be separated but be encouraged to live together in the normal way.

Where a person with autism demonstrates the desire for sexual activity yet, through a failure to understand the correct social conventions, is awkward and unable to achieve his or her objectives, the use of powerful hormonal drugs which diminish libido is inappropriate. Such actions should only be considered where is a definite risk of a serious criminal assault by the person.

15. THE RIGHT of people with autism and their representatives to legal representation and assistance and to the full protection of all legal rights.

All citizens, whether or not they are experiencing any form of disability, should share the same legal rights and expect the same protection from the law. People with autism should not lose those rights because they are unable to represent themselves in a forceful manner. Rather, the protection afforded by the law should be strengthened in recognition of this increased vulnerability.

It is unlikely that people with autism will be able to initiate or sustain legal actions in support of their rights. Under such circumstances, independent legal representation and assistance, should be freely available to individual or, if appropriate, their carers.

It is necessary for the care treatment afforded to people with autism to be constantly monitored by and independent agency. This role should not be left entirely to the service provider. Where any deficiencies are observed these should be pointed out by the monitoring agency and appropriate action taken to remedy them. Where further action is appropriate and the person with autism may not be able to adequately pursue his case, an independent advocate, speaking on behalf of the person with autism should be provided.

Legal aid, in terms of finance, should be provided by the appropriate agency when recourse to the courts becomes necessary in the interests of the person with autism.

16. THE RIGHT of people with autism to freedom from fear or threat of unwarranted incarceration in psychiatric hospitals or any other restrictive institution.

In a civilised country, removal from society would be reserved for those people who have been judged guilty, in a court of law, of a serious criminal offence. The isolation from society of people with autism who have committed no such offence is inappropriate and unjustifiable. The routine incarceration of such people is evil and a severe indictment of any country where the practice continues.

It is recognised that there could exist a very small group of people with autism whose behaviour is still so difficult that psychiatric intervention is appropriate. Such intervention should only be considered when it is proven beyond doubt that the person with autism presents an actual and severe threat to him or herself or other members of society.

Where, as a last resort, a psychiatric hospital is deemed appropriate, the service must offer genuine educative and training programmes which are subject to all the principles described in this charter. Progress should be monitored and the situation reviewed constantly to ensure rehabilitation into a less restrictive environment at the first possible opportunity.

17. THE RIGHT of people with autism to freedom from abusive physical treatment or neglect.

Any therapy used in the treatment of people with autism must be potentially beneficial to the individual with autism. Methods which depend upon any form of punishment for inappropriate behaviour are not acceptable in society at large or when applied to people with autism or any other form of disability.

In particular, no treatment which results in any of the following is acceptable:

1. evidence of physical pain or discomfort;
2. potential or actual physical effects such as tissue damage, physical illness or stress;
3. verbal abuse or insult directed at the person with autism;
4. threats or intimations of future actions which cause fear or anxiety to the person with autism;
5. denial of food, warmth, basic hygiene, or other necessities of life;
6. exposure to humiliation, discrimination or degradation;
7. neglect.

Where such practices occur, they should cease. If such actions are serious or if they are continued after their unacceptability has been established those responsible should be disciplined according to local custom and law.

18. THE RIGHT of people with autism to freedom from pharmacological abuse or misuse.

Medication should be used sparingly and only when absolutely necessary. Wherever possible, the medical practitioner should be able to discuss, with parents, guardians and carers, the possibility of using strategies other than those using drugs to overcome the particular problems. Medication can never be acceptable as a substitute for adequate care.

People with autism have a right to medication only when it is for their own benefit and in their own interests. No medication should be provided when this is merely for the convenience and ease of those caring for them. No medication, apart from that which is freely available to the general public, should be administered except under the direct control of a qualified and competent registered medical practitioner.

No effective medication is free of side-effects and the prescriber must be confident of a therapeutic advantage in any prescription. Where there is a likelihood of significant side effects, the individual must be monitored for their occurrence. Those immediately in contact with the person must be warned and alerted to any potential side-effects and these should be reported immediately to the prescriber for his or her consideration. People with autism do not always respond as expected to drugs so any abnormal effects must be reported to the prescriber.

All medication must be off the quality and standard normally accepted in that country. Medication must be given to the patient in the form specified and must be given at the specified dosage, conditions and time intervals. Prescribers should take steps to determine circulating blood levels where appropriate and possible.

The individual's response must be monitored on a formal basis. Any ineffective medication must be stopped. Where side-effects become apparent steps should be taken to minimise them. Individuals should be monitored for the early signs of the appearance of long-term affects such as dyskinesias.

Medication should, in any case, be reviewed regularly and wherever possible minimised or replaced by substitutes which may be safer or more effective.

Except for short periods of time and in particular circumstances, the use of major tranquillisers cannot be justified. Certain atypical tranquillisers, used at low dosages, may be appropriate for certain individuals on a longer term basis. Generally the use of tranquillisers does nothing to help the person with autism but serves only to sedate the afflicted person and to make him or her more manageable. At the same time such drugs will impair learning and decrease the happiness and understanding of the individual. Long term effects, including the occurrence of tardive dyskinesias are irreversible.

Funding should be available, from the responsible agency, to pay for appropriate medication.

19. THE RIGHT of access of people with autism and their representatives to all information contained in their personal, medical, psychological, psychiatric and educational records.

Although the extent of availability may vary, it is a legal requirement in many countries that people should have the right of access to all information is available for others to read but not to the person most affected or, in the case of many people with autism, their representatives.

Many instances have occurred where inaccuracies caused by ignorance, misunderstanding, prejudice or malice, have appeared in official records. Such inaccuracies can endure permanently unless challenged and corrected. Inappropriate or unfair treatment may occur as a consequence. Official records should, wherever possible, be agreed by the agency and the person or their representatives before becoming part of any official record.

The care and treatment of people with autism relies upon a partnership between many agencies. Such a partnership can only be successful when all participants, including those most affected, work together towards common objectives and based upon the same information.

The personal information stored in such records should not be made available to outside agencies, including researches, without the express permission of the person with autism or, if this is impossible, their representatives.

(1996) - A Miracle in the Making.
The Irish society for Autism