Autism Struggles: Family and The School System
The moment a child is diagnosed with autism is the moment that family’s life changes. The one thing a parent never wants to hear, “your chuild has autism.” According to Autism Society, 1 in 59 children are diagnosed with autism and more than 3.5 million Americans live with autism. Families with autistic children face many challenges. Many parents struggle emotionally and physically, even financially. Challenges are even faced in school, children often have a hard time emotionally due to lack of support. There are ways to alleviate the stress of the daily challenges like therapy or support groups, but that does not mean it gets any easier. Parent often neglect their own health while caring for their child. That can lead to unneeded stress and helath issues. Many people are often unaware of the challenge and lack of support that comes with families of children with autism, they often face emotional struggles and financial burdens that create hardships within the family. Autism is not something that should be taken negatively. It is a struggle, but it requires strength and support to get through it.
When it comes to autism, it is a full-time job. Parents very often face emotional struggles, whether it is going out in public, doctors’ appointments, and of course in the home. These struggles can lead to lack of support towards other siblings, divorce, and broken homes. Parents often will feel many different emotions. Having those feelings are not wrong, and it is understandable. Children with autism often demonstrate uncommon behaviors in public such as; touching and invading personal space, flapping their hands, or spinning which is a form on stemming, which causes embarrassment. “Parents can find it difficult and embarrassing when their child demonstrates unusual behaviors in public,” states Yvette Braizer, of Medical News Today, in her article “Autism: Parents face challenges, too.” Frustration is common when a child is “clumsy, unresponsive, angry, or disregarding of others” (Braizer). However, frustration is most common when others do not understand autism or when a parent or child is being judged. There are other emotions such as guilt, anger, and grief, that can lead to stress and anxiety. Braizer claims “Negative emotions are normal.” Being overwhelmed is also highly common. And if parents feel too stressed it can affect their own heath as well as their child's health (Braizer). It seems as though it is a continuous cycle of emotions that all contribute to one another.
Aside from emotional struggles, financial struggles are also very common. There is no way to be prepared for the financial burden that families face when it comes to autism. Doctors’ appointments are far from cheap and insurance companies often do not cover those appointments or treatments. There are a variety of appointments that a child with autism will have to go to. Those appointments include regular check-ups, testing, and therapies. Many appointments are for surgeries and scans and those appointments can add up to over a million dollars. According to Jennifer Faddis, from the university of Missouri, reports that parents pay up to $30,000 a year for Applied Behavior Analysis (ABA) therapy. ABA is an intervention where a child works one on one with a trained therapist for 30-40 hours a week. Faddis reports “some families quoted in the study reported skipping meals to be able to afford therapy for their children.” She also said others are even emptying savings and 401k accounts, selling their stocks and some might file for bankruptcy (Faddis). Vi-An Nyguen, of Parade.com, sat down with parents, Lisa and David Pauley. Their son was diagnosed with autism at the age of two. Lisa stopped working to take care of her son and the family is struggling while paying for Davis’s therapies on one income. It is often that parents have to opt out of surgeries that may have helped their child immensely, it comes down to the funds. Pauley states “but I really do think he could’ve made even greater strides, and made them probably a whole lot faster, if we’d had the funds for additional treatments.” She also knew that they had to be smart and aware of their finances. It is difficult for a parent to have to make that kind of decision and skip out of treatments for their child. The reality is that it is all too common that this happens among families (Nguyen).
Yes, children with autism attend school but there are special classes like life skills and essentials classes to fulfill a child’s needs. There are also different programs offered like applied behavior analysis, speech, and reading, that are done one on one with a student. There are also many tools used in the classroom to help aide students with autism and support them in daily activities. Autism Speaks.org has an accessible article “Autism and the Classroom”, that allows parents to read about what happens once their child gets to school. The article states “Once your child is diagnosed, it is crucial to sure he or she had the proper supports in school.” That is something that is commonly forgotten. By being sure that the supports are in place, a child can get the most out of their education. The school is there to work with the parents in making sure their child gets the best education (Autism Speaks). Although, there are times where this is not the case. Children with autism often have a hard time with communicating and that leads to behavioral issues in the classroom. Beth Saggers, senior lecturer of education and autism at Queensland University of Technology, claims “Challenges experienced interacting socially and communicating with others are common among students on the spectrum and will have an impact on every aspect of their lives.” Those challenges often lead to added stress and anxiety on the child and the parents. Saggers goes on to state “A lack of social-emotional competence can lead to not only a decrease in a student’s connection with school, but also academic performance.” Teachers should be working to better support the student. There has been talk about full inclusion of autistic students in general education classes. But due to behavioral issues and emotional struggles with students, in many cases they are punished for their behavior, although they cannot control it. General education teachers lack training for students that require specific classes. There are trainings that teachers can go through, however, it takes a credentialed special education teacher to be able to fully understand the needs of a student with autism.
With all the emotional and financial struggles many people believe there is a cure for autism. Although there is no known cure for autism there are certain therapies that can help and reduce behavior, but it does not cure autism. ABA therapy over time can reduce violent behaviors and help with social and other skills. CARD, Center for Autism & Related disorders believes ABA can improve behaviors “to a meaningful degree.” ABA is also used to teach new skills, maintain positive behavior, and to reduce interfering behaviors such as, self-injury or stereotypy (CARD). There are cases where a child has reduced and less severe behavior, however, that does not mean they are cured. With ABA therapy a child and learn to exhibit new and improved behaviors. Through my own experience with working with children with autism, I have learned that not all therapies work. ABA is about trial and error. Not one child is the same, for example, the student I worked with liked to draw and that is what was used for positive reinforcement for him to get work done. This child specifically needed breaks to avoid an overload of work and over time he was able to work for longer periods of time without breaks. Another student liked to play with blocks, it was used as reinforcement but also to help calm him down. To avoid outbursts and violent behaviors the blocks were used to not only give a reward but to help calm the student down from acting out. Certain strategies worked for one but not the other. Each student is unique and that is what was fun for me. No, there is not a cure but being able to work alongside a student with autism and help them is reward enough. It makes sense why a parent wishes there were a cure, and although there is research being done, there is no telling of it will be an option for everyone.
There is no doubt that having a child with autism is stressful and overwhelming. A great way to adjust and move forward is to try counseling and finding support groups. People often fins comfort in knowing that other people are going through the same thing. Janeen Herskovitz, autism spectrum topic expert, believes “as spectrum parents, we become adept at researching, finding, and financing all the right therapies for our kids, but we also have a tendency to neglect our own needs,” it is true. Parents are dedicated to helping their kids they forget about their own health. Herskovitz claims that counseling can also help with parenting skills, upkeeping a relationship with a spouse, and stress management. She encourages parents by stating “If you are the parent of a child with autism spectrum, counseling can make a tremendous difference in how you play the cards you’ve been dealt.” It really does not hurt to try. Through therapy parents can discuss with someone who maybe understands the issues. Or pherhaps another parent can show them ways to redirect their own anger, sadness, and other emotions. Therapy is often portrayed as a weakness, however, it is important to remaind strong for the child and relieve stress and other emotuons (Herskovitz).
Having a child with autism is not easy. Many people are not aware the daily and life struggle it is for families. They face emotional struggles and financial burdens and often have issues with school. In addition, many are also unaware of the sacrifices parents make in order to support their child and family. One parent may quit their job, leaving one income to support the family. One may have to pick up extra shifts to cover medical bills and treatment expenses. Their sacrifice can even lead to a decline in their own health. Something to be learned is that parents with autistic children are very strong and will do whatever they can to support their child. All hardships can be overcome. There is counseling available and support groups to parents that struggle. Parents always want what is best for their child and it takes strength to make sure their need are met. No one said being a parent to a child with autism is easy, but not all heroes wear capes.