Parents have to cope with a series of problems, some of which are practical and some of which are emotional. Many of these are common to parents of children with any kind of disability, while others are special to the families of children with autistic disorders.

The parents of any child with a long-term disability have to undergo a change of attitude when they first learn the truth and this is a painful process. Like all parents, they start off with the expectation that they have a perfect baby who will grow up to be a fully independent adult. They have to adjust to the fact that all their hopes and plans for their child's future, and their own future as well, will have to be changed.

They may have feelings of guilt, which are a waste of mental energy that can be turned to better use. Professional workers can help parents to develop a constructive attitude. The workers who fail to diagnose an autistic disorder and attribute the strange behavior to parental mishandling, or recognize autism but consider that it is caused by the parents, do great harm to the families and the children. Such ideas are gradually becoming less common but still exist.

Autistic disorders in a child cause special emotional problems for parents. The disability is not detectable at birth and is rarely diagnosed before 18 months. Parents go through emotional swings, at times knowing that something is wrong and at other times persuading themselves that all is well.

They reassure themselves because the child's physical development gives no cause for alarm and, every now and again, the child does something so skillfully that it seems they must be highly intelligent. On the other hand, social aloofness, when it is present, is painful and baffling for the parents. It is a common experience for parents to feel that there must be one simple key, which, if found could solve all the problems. Eventually the anxiety they have been feeling is seen to be justified and a professional opinion is sought. By this time the parents have swung so often between hope and despair that they may find the truth hard to accept.

Before the diagnosis is made parents often feel they are the only people in the world to have a child with such strange behavior and the knowledge that there are many others comes as a great relief. Meeting other parents through local autism groups is a source of emotional and practical support. The experience of emotional isolation in the child's early years is becoming less common as knowledge of autistic disorders increases, but it still occurs. This is one of the major reasons for the importance of early and accurate diagnosis. Research into ways of identifying the basic impairments early in life is ongoing and progress is being made.

In the early years of a child with an autistic disorder, the parents' attachment makes them persevere, even if the child shows little or no response. Despite all the difficulties, the very weakness and dependence of a child with a disability tends to make the natural attachment of parent to child even stronger. This attachment has positive results in that the child is loved and cared for. When progress does occur, each small step forward is all the more rewarding because it was so long in coming. The negative side is the tendency to give less attention to the other members of the family who are more independent but still need their parents' love and support.

Helping a child with an autistic disorder to develop skills and enjoy activities is hard work and time consuming. Combining this with bringing up other children as well sounds like an impossible feat. The only solution is to organize a routine so that each member of the family has their fair share of the parents' attention. A short session with a parent regularly each day is better than longer sessions occurring sporadically. Parents should not forget themselves in their timetable. They need some rest and relaxation away from the family in order to preserve their sense of proportion. If their horizons are limited exclusively to the daily life of the child who is disabled, no one benefits, least of all the child concerned.

Children with autistic disorders can cause parents extra expense if they destroy clothing, furniture, windows, wallpaper and so forth. If they are not toilet-trained, diapers have to be provided and sheets and other bedding continually washed. Depending upon the parents' income, the nature and severity of a child's disability, and other factors, parents may qualify for some type of financial assistance from the government such as Supplemental Security Income (SSI).

The social life of the family tends to be restricted by a child with a disability, especially an autistic disorder. If the children are behaviorally disturbed, it may be difficult to find babysitters and the parents may never be able to go out together. Some parent support groups may have a scheme for babysitting. If not, then the idea can be suggested and explored by interested members. Such schemes are always the result of individual initiatives.

Taking the child out in public can lead to problems. Most of them show no evidence of disability in their appearance. If they behave oddly, some strangers are critical and assume the child is "spoiled." A sensitive parent may avoid taking out the child, even on expeditions they might enjoy. For the sake of the child and the whole family, parents have to develop thick skins and take the child out as much as possible, ignoring the stares of the ill educated. Teaching appropriate behavior in public, beginning as early as possible, does help to reduce the major problems. Public awareness of and sympathy for people with autistic disorders has greatly increased since the first edition of this book was written, helped by publicity in the media and the film Rain Man.

Most parents are concerned about having another child, especially if the one with an autistic disorder is their first. There is now strong evidence that there is a raised risk of parents having more than one child with an autistic disorder unless the cause in the first child is known and is clearly not genetic. Parents have to consider the facts as they relate to themselves and their families and make their own decisions.

Relatives often provide help and support. Grandparents, for example, can be a major source of emotional and practical help, including babysitting. Loving grandparents may develop a special relationship with the autistic child, somehow finding a way around the social and communication impairments.

Unhappily, the attitudes of some relatives may be less constructive. They may feel that a child with a disability reflects badly on the whole family, thus disregarding the fact that all families have relatives with disabilities somewhere in their histories. They may try to lay the blame on one or other parent or their ancestry. They may reject the child and try to avoid seeing them or involving them in family affairs, visits or outings. Equally distressing is the relative who insists that there is nothing wrong with the child and that all the problems are due to the parents' methods of child rearing and dealing with difficult behavior. The best way to cope with this attitude is to keep cool, calm and dignified, provide information but refuse to be drawn into arguments. If there is no other way of changing attitudes, visit as little as possible with those who are unsympathetic.

It cannot be emphasized too strongly that autistic children vary widely in the severity of their disabilities and in the amount of progress they can make -- ranging from very little all the way to the achievement of independence in adult life. The parents of the children with the most severe disabilities have to cope with the sadness of seeing little improvement in their own child, while knowing others with autistic disorders have made great strides.

When the diagnosis is first made, all parents hope that their own child will be one of those with a good prognosis, but follow-up studies have shown that a substantial number of children are not in this category. This is just one more hard fact among many with which parents have to come to terms. It is pointless for them to waste time in blaming themselves for their child's problems. The constructive approach is to aim to find a way of life for their disabled child in which he will be as happy and content as possible, whatever his level of function. Parents whose children make good progress should avoid taking a superior attitude to others whose children do less well.

When the children grow up, the parents of those who are more able often have to watch without being able to help while their sons or daughters try to become independent and suffer in the process. The parents of those with more severe disabilities who will be dependent on others all their lives are at least saved this source of distress.

Parents with children who will never become independent as adults worry about what will happen to their child when they themselves can no longer care for them. The practical steps parents can take are to ensure that the child is known to the local social services, to investigate different types of residential accommodations well before this becomes essential, and to obtain legal advice concerning wills and trusts if this is appropriate to the family's financial situation.

Unity within the family is a major factor in coping successfully with the strain of raising a child with an autistic disorder. It is important to avoid the temptation to blame the other partner for the child's behavior. It does no good, and a lot of harm, to criticize each other for mishandling the child. Discussions concerning genetic traits in the family are interesting if pursued in the spirit of intellectual inquiry but not if they are used as the focus of blame.

A series of sleepless nights and terrible days can try the patience of a saint, but the effort to remain calm and reasonable is well worthwhile. Keeping one's temper and refusing to nag or become irritable all become easier if worked at consistently. Good family relations have a beneficial effect on the child's behavior, in part because any child is happier and easier to manage within a united family. Also, the proper handling of difficult behavior demands a consistent approach from both parents who must back each other's decisions in front of the child and reserve questions and discussions on methods for when they are alone together.

Some parents are drawn closer together by the experience of having a child with a disability, while others are torn apart by the stress. Support from relatives on both sides of the family, help from professional workers and appropriate placements in preschools, schools and adult services all contribute to lessening the burdens on families. A sense of humor is also a great help. Many of the things that the children do and say are extremely funny, even if trying at the time they happen, and it does one good to laugh at them in retrospect.

Occasionally one is faced with the dilemma of knowing another family with a child who probably has an autistic disorder but whose parents are unaware or unwilling to face the possibility. If the child's parents do not know about autism, tactful inquiries and comments may prove to be the catalyst needed for the family to begin to find help. If on the other hand the parents do not want to know, there is nothing that can be done except to wait until they begin to acknowledge there is a problem and to be ready with help at the right moment.