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How should parents plan for their child with autism throughout their lifetime?
Release Date:
2021-03-27
Source:
Typically, children with autism spectrum disorder exhibit the following behavioral characteristics: a) social communication impairments; b) delays in language development; and c) repetitive or stereotyped behaviors. These hallmark features usually become apparent between the ages of one and two, with a formal diagnosis often made around age two or at five to six. Such conditions may persist throughout life. On this occasion, let us discuss how parents can plan for their child’s long-term future.
Typically, children with autism exhibit the following behavioral characteristics:
a) Social impairment
b) Language Development Disorder
c) Stereotyped behavior
These prominent characteristics typically become apparent between the ages of one and two, with a formal diagnosis often made around age two or at five or six, and they may persist throughout life. On this occasion, let us discuss how parents can plan for their child’s lifelong journey if they have autism.
1. Be mentally prepared for the long term.
1) Most parents, upon receiving a diagnosis for their child, find it difficult to accept the reality, feel deeply weighed down, and are on the verge of emotional collapse.
After a period of inner turmoil, they will stop at nothing and spare no expense, resorting to every possible means in a blind effort to help their child recover. For example:
1. Continuously seeking interventions from various institutions, with overly high expectations and the belief that results will emerge quickly.
2. Relying on folk remedies wastes a great deal of time and money.
3. Some parents even go so far as to give up their careers and personal lives, placing their entire focus on their children.
Parents’ love for their children is entirely understandable. However, if that love is expressed impulsively and irrationally, coupled with excessively high expectations, it can easily lead to frustration—and a loss of confidence and courage—when outcomes fall short of those expectations. Moreover, overly lofty expectations place undue pressure on children, which can backfire. Therefore, it’s essential to adopt a calm, realistic, and long‑term mindset toward your child’s development, one that embraces steady, supportive companionship. Cultivating a home environment that is safe, stable, and nurturing is crucial for their growth.
2) Parents are the primary agents of educational rehabilitation and lifelong decision-makers, with family-based rehabilitation ongoing throughout the entire process.
Parents are a child’s first teachers, serving as role models and objects of imitation. The family is the child’s primary environment, and this holds true even for children with typical development. Therefore, parents should set aside time and energy to spend with their children—this is especially crucial for children with autism.
Parents should make full use of everyday life to carry out rehabilitation education, reinforcing their child’s positive behaviors and reducing negative ones. Family-based educational training serves as an extension and expansion of school‑based instruction. Many parents have adopted this approach with excellent results. Starting with daily routines is more practical, more routine‑oriented, and more integrated into real‑life contexts, making it easier for children to learn, apply, and consolidate these skills.
Example: Qiqi, female, 5 years old. Her parents are highly educated; she was born in the United States and was diagnosed with autism at age two and a half. In the early years, she received home-based training primarily using applied behavior analysis, conducted jointly by professionals and family members for 30 hours per week. At age five, she entered elementary school, where she excelled academically, particularly in mathematics, earning awards that enabled her to advance to middle school and participate in orchestra performances. Due to her relatively passive social interactions, she continued to receive weekly professional behavioral support, while her parents occasionally provided guidance on academic matters as well as on daily living and social skills.
3) Make full use of the school’s educational resources.
Parents and teachers should maintain frequent, close communication. Parents can not only learn valuable instructional content and teaching strategies from teachers, aligning home‑based education with school‑based instruction, but they can also benefit from the school’s unique social environment—something that cannot be fully replicated at home. Schools bring together many peers, whose influence is often irreplaceable by adults. Moreover, interactions among peers extend beyond the school grounds and can even continue at home, creating an essential context for children to develop meaningful relationships.
4) Maintain a positive attitude toward life; don’t let the child become “withdrawn,” nor should the parents follow suit and become withdrawn as well.
Sadness, frustration, regret, and feelings of inferiority—these negative emotions are commonly experienced by parents in families affected by autism. They may also find themselves bursting into tears or becoming irritable and easily angered. Such reactions are entirely understandable and represent a normal emotional response. The wiser course of action is to allow oneself to express these emotions appropriately, then recalibrate one’s mindset and approach the child with greater rationality.
To maintain a harmonious family, it is essential for spouses to have clear divisions of responsibilities, offer mutual support and understanding, and nurture a healthy marital relationship. Above all, fostering a positive family atmosphere—where children can see their parents’ smiling faces and feel their encouraging, affirming gazes every day—is what truly matters.
Children with autism and their families face various social pressures and prejudices, which create significant psychological barriers to “going out.” However, there are also many kind-hearted people in society. When circumstances permit, parents are encouraged to take their children to public places such as parks, restaurants, and amusement parks, helping them integrate more easily into unfamiliar groups.
5) Maintain communication with your physician and seek necessary medical consultations and supervision as needed.
Parents of children with autism sometimes need to seek medical assistance and develop educational plans based on timely assessments of the child’s developmental level. In approximately one-third of cases, seizures may occur during adolescence; prompt, systematic treatment is crucial to prevent the condition from worsening. Some individuals may also experience significant sleep, feeding, or emotional difficulties, which require timely intervention—both for the child and their family—and can help improve their quality of life. Furthermore, co-occurring psychiatric disorders such as schizophrenia, mania, or depression should be given due attention. The former, in particular, can sometimes become severe, with hallucinations and delusions that may even jeopardize the safety of the individual and others.
2. Recommendations on the Content and Objectives of Rehabilitation Education and Training
1. Basic skills essential for survival and daily life constitute the most fundamental and primary content.
According to relevant autism research, scientists have found that, from childhood through middle age, the most critical skill for individuals with autism is mastering self-care—such as bathing, dressing, maintaining personal hygiene, and preparing meals. Their analysis indicates that for those with severe autism, these practical skills are even more essential than language or cognitive abilities when it comes to securing employment or achieving a sense of purpose in life. This also includes knowing how to use public facilities in communal settings, recognizing traffic signs, and avoiding potential hazards. In short, acquiring everyday life skills is of paramount importance.
Some parents blindly prioritize their children’s academic performance while neglecting the development and training of their social skills. By the time the children grow up, they often still lack the everyday life and behavioral competencies that should have been acquired in early childhood, leaving parents regretting that they did not give these aspects due attention at the time.
2. Train basic social skills and adherence to common social norms.
Once personal life skills and hygienic habits have been established, training in general social etiquette and public conduct is equally important, as these are essential for upholding one’s dignity. For example, one should never urinate or defecate in public, refrain from exposing one’s private parts in public spaces, and certainly avoid touching others’ private areas; one should also learn basic manners for greeting and responding—such as returning a simple handshake when someone extends their hand in friendliness—and understand that it is improper to take another person’s belongings or enter their home without permission.
3. Their academic growth is a long-term, lifelong process; therefore, at every stage of life, they cannot do without the involvement of their parents and family members.
First, we teach them to acquire essential life skills, develop common social habits and communication styles, and reduce or mitigate maladaptive behaviors. Only then do we address academic matters, respecting their individual developmental stage and unique characteristics. By identifying their interests and strengths as they grow and nurturing them, we may open up certain opportunities for their future careers.
Many children demonstrate a strong interest and natural talent in using computers, assembling and building projects, creating art or music, and engaging in physical activities. Identifying these interests can also help them learn to plan their leisure time; when they have something they enjoy doing, it provides an additional way to stabilize their emotions, reduce inappropriate behaviors, and foster positive interactions with peers—benefiting their overall quality of life. We cannot force them to like anything; our role is simply to offer them the greatest possible space and opportunities to grow and thrive.
03. Employment of Individuals with Autism Spectrum Disorder
1. Employment should be provided in a protective environment.
It is important to fully respect their choices, taking into account their strengths and interests. For instance, if they have a strong memory and enjoy structured, repetitive tasks, this can be leveraged to perform many of the same duties as others—such as organizing and cataloging books in libraries or supermarkets, arranging merchandise, or recording prices. They approach their work with meticulous care and diligence, which aligns with their personality.
2. Targeted pre-employment training requires a lengthy process, and even after securing a job, ongoing support is essential to help the individual maintain their employment.
Not only should you help him acquire new skills to meet the challenges of the workplace, but you should also understand and assist him in promptly addressing and maintaining healthy interpersonal relationships. For instance, if he encounters communication difficulties with his employer or colleagues, it’s important to prevent misunderstandings that may arise from prolonged poor communication. Likewise, a child’s concerns at work sometimes require parental support to be effectively voiced—this, too, is part of fostering a protective environment.
3. The significance of employment is of great importance to one’s life and family; regardless of the profession or the tasks undertaken, individuals should derive satisfaction from participating in social activities and from exercising their civic rights and dignity—this ought to be the highest aspiration.
04. Marriage, Love, and Family Issues
From a biological standpoint, both male and female cases exhibit nearly normal development of secondary sexual characteristics. However, challenges in psychosexual development, emotional expression, and social skills can hinder their ability to form friendships and pursue more nuanced romantic relationships. How best to guide them remains an emerging area of inquiry.
This article was compiled and published by the Autism Research Institute. Please cite the source if you wish to reprint it.
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