Autism-A Parents Perspective

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Autism-A Parents Perspective 1

Growing Up With

Autism

A Parent's Perspective

Buy custom Autism-A Parents Perspective term paper

Timothy Green

Gen 101

Kelley Townsel

April 1, 00

Autism-A Parents Perspective

Growing Up with Autism

A Parent's Perspective

The National Information Center for Children and Youth with Disabilities define Autism and Pervasive Developmental Disorder as developmental disabilities that share many of the same characteristics. Children usually exhibit evidence of the disability around age three. A neurological disorder, Autism-PDD can affect a child's ability to communicate, understand language, play and relate to others.

(FSN 1 August 00). Although the exact causes are not known, these disorders are more common in boys than in girls. Children with autism or PDD vary wildly in their abilities, intelligence, and behaviors. A common reference is Dustin Hoffman's portrayal of an autistic savant in the movie "Rain Man." Although blessed with an uncanny ability in mathematics, his social skills were on the level of a seven year-old. For an individual in his mid-40's, this presented a host of functional problems. His ability to survive and function in the world was hampered.

Autism-A Parent's Perspective

However, what was not addressed was the effect his disability had on his family, immediate and extended, and the difficulties that they faced. As a parent of an autistic child, I will try to shed some light on this subject.

The diagnosis was shocking, confusing, devastating, and ultimately life changing. As a parent a diagnosis of autism is one of the most difficult experiences they can face. The ramifications on the rest of the family are not immediately evident because they cannot see the depth of the situation at first. It is difficult to put into words just what parents feel when told that their children are disabled. Some health professionals, in their efforts to remain emotionally detached, present the information in a cold and unfeeling manner. Little regard is given to the emotional state of the parents, and empathy is rarely in evidence.

My son's name is Alex. When we first told our families about his condition, most reacted to the news with confusion. They wanted to know just what Autism was. Unfortunately, we were not able to give them much information at that point. Mostly they were not willing to accept his disability.

Autism-A Parent's Perspective 4

They suggested that all he needed was some discipline. We tried to put his disability into context by using the Rain Man movie as an example. This gave them some understanding but also caused additional confusion because they thought that he was some kind of mathematical genius. Discussions with other families of autistic children have revealed similar experiences. Mitzi Waltz, in her book Autistic Spectrum Disorders relates a mother's concern for the lack of family support.

As far as the extended family, most of them act like Doug does not even exist. That's mainly on Doug's father side of the family. On my side, Doug is just kind of "there," nobody really does much with him. I do not have much help or support from them.

---Debbie, mother of eleven-year-old Doug (diagnosed PDD, fragile-X syndrome and sensory integration disorder. (Waltz, M. 00)

"You ought to be able to turn to your own parents and other relatives for support and encouragement, but it is not always possible" (Waltz, M. 00 Autistic Spectrum Disorders). In recent years there has been a more accepting attitude about Alex's disability. Although there is more support because of greater understanding an underlying feeling of exclusion is still present.

Autism-A Parents Perspective 5

One of the more difficult areas for families of autistic children is dealing with rude or clueless remarks from strangers. I am sure you have experienced the scene in the checkout line or the neighborhood fast food establishment and a child is exhibiting obvious misbehavior. Autistic children do not have the benefit of the sympathy factor. There is no wheelchair or obvious disability to signal, "this is a disabled child", and so people assume that your child is just unruly. Some are quite vocal about letting you know about it. We used to carry cards explaining the problem to busybodies but his behavior has mellowed to the point that it is no longer necessary.

Participation in social activities was also curtailed in the early years because of his behavior problems, and our inability to deal with them.

Self-isolation became an easy alternative to dealing with the challenges of attending social functions. Family gatherings were tolerable because our families knew of his disability, and we did not have to spend the majority of our time trying to keep him in line. Rarely did we take him to a friends' house for a cookout or some other gathering, especially if other kids were included. Alex tended to play alone or inappropriately.

Autism-A Parents Perspective 6

We also had trouble finding reliable babysitters when we sought to go out. A lack of proper childcare impacted greatly on our social life. Friends we had before Alex's problems became evident tended to fall away. The reasons were probably many but not always clear. They may have had as much to do with the fact that we had less time to spend with friends than we used to.

The impact on our other children is difficult to measure. It would not be surprising to see some resentment because of our need to be totally involved in Alex's care. As a result our involvement in some of the activities they were involved in were not as passionate as they would have liked. Overall though, they were supportive to the extent that they understood his problems. As Sandra Harris explained in her book, Siblings of Children with Autism, "A young person may understand intellectually his brothers Autism is an enduring problem, but still be reluctant to accept that limit on an emotional basis". (Harris p.40)

Autism-A Parents Perspective 7

Alex is now fourteen years old. Although he has progressed significantly in many areas there are still challenges ahead. He will attend high school in the fall, and a new set of problems and opportunities will arise. When he was first diagnosed the doctor suggested that he might never talk or be able to read or write. Not only can he do those things, he can also read music and play the piano. Leading me to believe that there are always "possibilities".

Autism- A Parents Perspective 7

References

Harris, S. (14) Siblings of Children with Autism (p.40)

Bethesda Woodbine

National Information Center for Children and Youth with Disabilities

Fact sheet number 1 (August 00). Retrieved April 1, 00 from

http//www.autismweb.com

Waltz, M. (00) Autistic Spectrum Disorders Understanding the Disorder and Getting

Help. Retrieved April16, 00 from www.patientcenters.com/autism

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