Child With Autism: Restructuring Thoughts And Lives
For a long time, I wanted to try to find a way to share with people what it's like bringing up a child who's different. I wanted people to be more accepting of those with autism, and I became increasingly frustrated that some of the more challenging behaviours that can be so prevalent are never talked about. My hope was that if I could find a way to share our story people might become more accepting in the future. And I wanted to dispel the myth that life with a child with additional needs is always grey. My son brings light into my world. We laugh and joke a great deal. Ours is a happy life, even if a little unconventional at times!
Autism spectrum disorder is a condition that continues to baffle scientists, doctors, psychologists, and parents. Ongoing research is encouraging and at the same time can be frustrating for parents and educators of children with autism. The 2012 change in the DSM-VTR description and the removal of Asperger's syndrome as a separate disorder and including it in the autism cluster was very confusing to many. Parents of children and adults with Asperger's who had spent much of their time explaining the difference between the two conditions, now had to explain something entirely different. Even with that stated, autism cannot be isolated into a single condition because there are so many varying degrees to autism spectrum disorder.
Research and Confusion
One of the most alarming research studies that continues to cause confusion and distrust of the medical profession is the 1998 study that suggested childhood immunizations may cause autism. Since that time there has been a rise in the number of measles cases reported each year. There has also been a rise in the number of studies refuting this claim; in spite of these studies, there continues to be an increasing number of parents who are called anti-vaxers. The CDC and medical doctors continue to caution parents that denying their children vaccines does not prevent autism, but does increase their vulnerability to three potentially deadly diseases. One of the reasons parents have clung to the unsubstantiated 1998 hypothesis is fear of a condition that is misunderstood, and while a challenge for parents and the children themselves, should not be as stigmatizing.
Parents of children with autism will often speak in the same conversation of the frustrations and the joys of parenting a child with autism. Their frustrations are often not so much directed at their child as toward their own feelings of ineptness in reaching their child, and their inability to become a part of what often seems a secret world. Parents are often concerned with the stigma associated with autism, and how this affects the child's social as well as academic development. "Normal" children are often bullying the child with autism, and teachers many times treat them with pity. Autism is considered by educational systems as disability and is treated as such. This is probably the most troubling aspect of the disorder; not that the child has it, but how he or she is perceived and treated because of it.
Children with autism do not often play well with others. One reason is to do with communication as some children with autism are highly verbal, while others may barely speak. Neither of these types of autism are absolute proof of an intellectual disability. These children are simply wired differently. They have extreme sensitivities to external stimuli, often can only tolerate certain fabrics or even food textures. Certain lights, sounds, or visual stimuli is often intolerable. The child may react violently to these stimuli, and at times part of the reaction is due to having informed parents and teachers of the aversion. Kids with autism do not understand when someone does not get the message the first time, as they rarely have to be told anything twice.
Autism and Relationships
School systems mistakenly place elementary aged children with autism in small group classrooms and they learn maladaptive behaviors from profoundly mentally retarded children.Parents of children with autism are often frustrated and embarrassed by their child's behavior in public. Children and adults with autism have little to no social filter. If asked a question, they will tell the absolute truth. They can lie, but if they lie it is deliberate and has a purpose. There must be a pattern to it. However, if asked if they like a particular dish that Aunt Matilda makes that no one ever likes, but eats to be polite - the child with autism will say in no uncertain terms: I do not like it, no one does and they just do not want to hurt your feelings. There is no rudeness intended, at least in the sense that most frame this word. However, the word rude means basic, plain, without embellishment. Rudimentary.
A child with autism, of course, must learn how to physically survive in the world. These things are easy. When you tell the child with autism to not cross the street without looking both ways, and only to cross when the walking sign signals you to, you will never have to say it again. In fact, if there is an occasion where the signs are malfunctioning and you try to get the child across, you might have a tantrum on your hands, and find yourself walking several blocks to find a street where the signals are working.
A child with autism will not break rules because these are a part of daily patterns for survival. This makes it difficult for families who at times may wish to "play things by ear" or be spontaneous. If told there is a family trip to the zoo on Saturday, but Aunt Matilda died on Thursday and her funeral is scheduled for Saturday, the child is likely to consider Aunt Matilda rude and be unable to accept such a change in plans. When told he or she is going to an event, the wheels begin ticking into motion of how he or she will be able to accommodate this out of the ordinary (un-patterned) event. To undo all the mental, and sometimes mental preparation that is necessary for the child with autism, creates frustration that is often expressed in anger and lashing out. These behaviors are difficult to deal with, and parents especially when there are other siblings, feel they must punish the child as they would any other.
Parenting the Child with Autism
A child with autism cannot typically be punished in a way that will make sense to him, and punishment will just compound the problem. While he or she may not completely understand or accept the parent's reasoning, the only thing a parent can do in a situation such as this is use logic. The child will most often respond to logic, and will respond back logically, but in such a manner that is lost on the parent. For example: If people are going to die when we make plans for the zoo, then we should not make plans. Sadly, the child with autism is often punished in severe ways that are psychologically painful, such as locking in room, or removing a privilege to a device or activity that is actually helpful to the child.
Parenting a child with autism is not easy. Children with autism typically do not respond with emotion as most of us know it. They are not prone to affection, and often feel uncomfortable when others cry. They do not like spontaneous hugs, or other expressions of affection. However, most children with autism do respond well to compression therapy. This helps to calm their anxiety and allay their fears over what has seemingly lost control in their world. When a child with autism is feeling anxious and begins pacing, it is because they fear losing control - losing order. The child should have a safe cozy chair that molds to the body that he or she knows to go to when feeling this way.
Often the life of the parent of a child with autism is lonely, as these children often require much supervision due to their inability to think abstractly, they can find themselves in trouble or even danger. However, when rules are established, the child will typically follow to the letter of the law, and even if Mom or Dad wish to break a rule such as desert before dinner, they may have a fight on their hands. Setting up strict routines and abiding by them are of utmost importance to and for the child with autism, but often seems unfair to other children in the household. The young child with autism feels that if his or her bedtime is 8pm, that everyone should also be in bed at that time.
Conclusion and Recommendations
The daily frustrations and joys of being the parent of a child with autism become facts of life. Often parents of these children feel isolated, as their friends and family with children the same age may no longer socialize with them due to their own lack of understanding and patience. Other parents may also feel that the parents of a child with autism is spoiling the child and do not wish their children to be exposed to the bad behaviors of a child with autism.
Although therapy or counseling is not a replacement for family and friends, it can be an outlet for frustration as well as a resource for information or to help build a network with other parents of children with autism. It may be beneficial for parents, and especially stay-at-home parents to seek therapy from an online therapy source. With online therapy, the parent can communicate via email or real-time chat which can be a source of immediate aid to calm frustrations, answer questions, or provide information parents can relay to teachers and other caregivers.