Impact of an autistic child on the family. The autism is a troubling enigma, rather than a problem that affects a person, is a disabling disorder that affects both the child and the whole family . The care that an autistic child requires is very demanding on the child’s family. When parents try to describe living with an autistic child, they use very different terms such as: painful, annoying, difficult, normal, complicated, very satisfying, maturing, disappointing, traumatic, and many others. The truth is that each family, and within it each member of the family, is affected by the autistic member in a different way. The impact that autism produces, in addition to varying in families, and in individualsthat form them, changes according to the stage in which each one is.
Summary
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- 1 Impact of an autistic child
- 1 Upon receiving the Diagnosis
- 1.1 Denial
- 1.2 Impotence
- 1.3 Guilt
- 1.4 Anger
- 1.5 Duel
- 2 During the school years
- 3 Adolescence
- 4 Adulthood
- 1 Upon receiving the Diagnosis
- 2 Sources
Impact of an autistic child
Autism affects the whole family. The truth is that each family and within it, each member of the family, is affected by the autistic member in a different way. These little ones can grow up in poor homes, in middle-class families, and even in wealthy families. We are all exposed to having an autistic child at home, but how we come to terms with the news will make a difference during their upbringing. Those dreams about the future of your baby need to take a 360º turn , and it is no wonder. The child will need all your effort, which implies many challenges that you will assume over the years.
We know how difficult it is to erase all your plans and give your life a fresh start. However, the constant support of specialists can help you understand that new role that you have to assume. Parents are exposed to multiple challenges, which have a strong impact on the family at an emotional, economic and cultural level. Professional support can help cope with a child with autism. Experts can help parents manage behaviors. Caring for a child with autism can be exhausting and frustrating. Unfortunately, not all families have access to these professional services, for one reason or another.
The impact that autism produces, in addition to varying in families, and in the individuals that form them, changes according to the stage in which each one is. The effect of autism is similar to that of any other permanent disability in a family member, so there are aspects that are common to other disabilities. Certainly having an autistic child can be one of the most devastating experiences for parents in particular, but also for other children. It subjects the family to serious stress and many of those who have managed to overcome it are now part of support groups where they share their experiences to help others face the greatest source of concern, which is the fear of the unknown. Parents often feel bad about diversity, the intensity and contradiction of the feelings they have regarding the autistic child and the situation in which they live. With effective help, these feelings can be channeled to cope with them.
Critical periods of family transition
Certainly, having an autistic child can be one of the most devastating experiences for parents in particular, as well as for other children. It subjects the family to serious stress and at times it may seem like the end of the world, but it is not, just as it is not the end of the family. Many have managed to overcome and their experiences help others to face the greatest source of concern, which is the fear of the unknown. Parents often feel bad about the diversity, intensity and contradictoriness of the feelings they have regarding their autistic children and the situation they live. An effective help can be knowing that these feelings are normal, that other parents have had them, and that it is not embarrassing or bad to have these reactions, nor are you a bad person to have them.
Each family faces this challenge with its own style, however, there are common elements that are worth highlighting, and that usually appear in the different stages.
Mackeith describes four critical periods of transition that all families go through:
- Upon receiving the diagnosis
- During the school years
- Adolescence
- Adulthood
Upon receiving the Diagnosis
It is common for parents to have undergone a true pilgrimage from one professional to another, before receiving the diagnosis. They were able to tell them that the child is autistic, has autistic behaviors, or has a pervasive developmental disorder. Regardless of what words are used, it is often a devastating shock for parents who have already gone through months or years of worry, disappointment, and undescribable but clear forebodings that something is seriously wrong. For many parents, this pain is so intense that even years later, the mere memory of that moment makes their eyes red.
Denial
A distinctive element of autism, is the one that facilitates in the family and in the parents in particular, the denial of the problem. Because in most cases the autistic individual appears physically “normal”; In addition to the fact that it is rare for doctors to detect physiological problems that explain the behavior of the autistic person, it is common for family members to individually or collectively raise the idea that “it is not so serious, since it is not seen” , or that “as it is not seen, there is no justified cause, and therefore the child must be normal.” As we can see, the characteristics of autism favor denial of the problem in the family, which can range from pretending that everything is fine and will pass over time, to more sophisticated forms of denial. where we find parents who go to special services for autism and participate enthusiastically, but retain deep down the idea that all this is done “while composing.” The most serious effect of this denial is that the family postpones a series of goals and activities, until the autistic person “composes himself.”
Impotence
It is common for parents to feel helpless, defeated, and paralyzed, even before they start. Having an autistic child can be a serious blow to self-esteem and self-confidence, for several reasons: First, because they don’t know how to parent an autistic child. They face strange and inexplicable behaviors, unpredictable reactions, and needs that no parent is prepared for. There are no established rules, nor models, nor previous experiences that help to know what to do. Second, the need for specialized help in the care and education of the child can make them feel unfit as parents.
Third, the lack of information regarding autism, the fear of the unknown: not knowing what to expect or if it will be possible to cope with what is presented in the future. All of this can lead to deep depression, a devastating sense of hopelessness in which the only certainty is that “there is nothing I can do.”
Guilt
All pregnant women have at some point the fear, sometimes hidden and sometimes overt, that their baby is not “normal” or “healthy.” In mothers of autistic children, this nightmare becomes a reality and the idea arises that something they did wrong before or during pregnancy: the aspirin they took, gymnastics classes, not having stopped smoking before, some hereditary problem, or any other reason, it may be enough to explain why the child is wrong, and who is guilty. The blame may be even greater for the widespread dissemination of theories positing autism as caused by an inappropriate relationship with parents (particularly with the mother) during early childhood.
Even when this trend is scientifically ruled out, there are still people, including health professionals, who advise, like Bruno Bettelheim in 1967, that the best thing for the child is to get away from the cause of his autism: his parents. No matter how intense the guilt, information and common sense help overcome. Nothing in the behavior of either parent could have caused their child’s autism. Even if a genetic cause could be found, it is clear that it was unintentionally transmitted and that, had it been known, it would have been avoided.
Anger
Anger is a natural result of guilt – someone has to be to blame for what happens to my child! Anger goes against everything: with the doctors, for not finding a cure; with educators, for not getting him to learn; with the spouse, because he / she is not able to relieve the pain; against other parents, because they do not appreciate the normality of their own children; against their sick child, for being autistic In those moments, parents feel that no one can understand what is happening to them and someone has to “pay” for this unfair situation. Anger serves above all, to hide pain and sadness. Parents often feel less vulnerable being angry than sad.
Duel
At the base of all other emotions is a deep sense of loss. He lost the ideal and perfect child he once thought he had, and with him, many hopes and dreams surrounding his future. The perfect family you once imagined is in shambles and parents don’t know where to start picking up the pieces. Each person has a different way of handling this sense of loss: some cry and ask incessantly “Why me?”, Establishing a circle of self-pity and wanting everyone to realize how much they are suffering; others handle this grief more controlled and quietly: they remain silent, pensive and gloomy. Sometimes they feel so sad that they come to think that it would have been better if the sick child had not been born. As hard as it may seem These emotions are normal and are a way of trying to evade the reality of a child with autism. Over time, these emotions are also more tolerable, and recognizing them without fear of feeling “bad” will allow parents to accept reality more easily and be alert to their own reactions and behaviors to the problem.
During the school years
This stage presents special challenges such as:
- Search for special services (school, therapist, doctors, dentists, etc.) capable of meeting the needs of the child. This can be a major source of additional stress due to the lack of services and / or doubts whether the child is being given the best possible care.
- Change the routines and schedules of the whole family to have time to care for the autistic child. Establish a structured routine for the child’s activities.
- Feelings of being isolated and a “different” family, unable to integrate into the activities of the majority. Seeking the support and understanding of other parents of autistic children.
- Facing the inevitable evidence that the child is really “different”, which can cause additional stress in one or more family members, or even cause depressive crisis or withdrawal from a family member.
- The child demands more time and attention from the parents, which are subtracted from what they used to dedicate to other activities.
- The parent who takes care of the child often feels alone, trapped and overburdened, unable to relate to parents of normal children and totally paralyzed by the enormous and endless burden that they carry. Sharing the burden between parents and other family members helps reduce these paralyzing feelings.
- Rivalry and contradictory emotions of love, protection, courage and envy on the part of the siblings.
Adolescence
By the time the autistic individual reaches adolescence, parents are true experts on autism. They are also older and have less energy. The focus begins to shift to other aspects, such as:
- Your child’s differences with others of the same age are more directly confronted: as other adolescents walk into adulthood finding their own place in society, your child remains indifferent to social events, a career, or struggles to be independent. Neither does the “first party” arrive, nor do the dates, the suitors or the phone calls.
- It is necessary to face the sexuality aspects and solve them.
- She begins planning for the future: job training, financial security, and arrangements for the child to live adequately when the parents are absent.
- At this time, parents also have to manage the differences of their own marriage with others: when other couples have the opportunity to re-meet by starting to stay at home alone, without having to take care of young children, they must continue to care for a child. child who depends on them. They must redefine their role as parents of a dependent child, but no longer a child.
Adulthood
At this stage, there are two main concerns: who will take care of the child when the parents cannot, and the urgency of having the financial means to ensure adequate care and attention. The concern of the siblings about the care of the autistic individual is also more important, as well as the fear of being carriers of a genetic problem. The transition between the different stages is difficult for any family, but for those with an autistic member, the traditional symbols or rituals that mark the transition between one stage and another (such as First Communion, graduation, etc.) may occur late or never show up.
