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Life on the Spectrum

This page from my Daughter, Laura, her account on Autism from her own personal experience--also many informative links.

Very few people today can say that they have never heard of Autism or Autistic Spectrum Disorder(s). The increased knowledge and methods of diagnosing this disorder, along with attention from the media, make this topic frequently cited. I must say, however, I knew little about Autism before my daughter, Alyssa, was diagnosed at the age of three.

I was concerned about her delays as early as one year; however, her pediatrician was not even mildly concerned until 15 months of age. Even at that time, she suggested we wait several months before seeing a specialist. At two, we had Alyssa evaluated by a team of child psychologists, and everything pointed to some type of Pervasive Developmental Disorder (PDD). I was glad that I pushed for an early evaluation; we were able to receive home services from the county, and later she was placed in an Early Childhood Special Education Program. This early intervention, which included Speech, Occupational, and Physical Therapies, has been a huge factor in Alyssa’s development. Then at age three, Alyssa was seen by an excellent pediatric neurologist at Children’s Hospital who diagnosed her with high-functioning Autism.

The challenges of Autism are very different from those of other disabilities. Autism is pervasive – it affects almost every aspect of development. Probably the most defining characteristics are difficulties in communicating and understanding the social order. Some children with Autism may be able to speak well, but words, phrases, or sentences may seem out of context, often recited from memory (echolalia). They often interpret language literally, experiencing difficulty understanding humor, sarcasm, or figures of speech.

Many autistic children have sensory issues. Typical children can learn from what they see, feel, or hear, touch, and smell. In autistic children, the brain seems unable to balance the senses appropriately, making sensory information faulty. This makes the child's experiences of the world confusing. Many children with autism are extremely sensitive to certain sounds, textures, tastes, and smells. Others are oblivious to extreme cold or pain. An autistic child may fall and break an arm, yet never cry. Some children may cover their ears and scream in pain when hearing a vacuum cleaner or blender.

A child with Autism may show restricted, repetitive, or ritualistic behaviors, interests, and activities. For example, a child may insist on sameness, preferring certain clothing or eating only certain foods, may line up their toys or objects, or focus on only a small part of a toy or object. Some children with Autism exhibit self-injurious behaviors, i.e. head banging, show aggression, and may become angry or anxious if their daily routine changes in any way. It is quite common to see these children flap their hands or make other odd hand and body gestures.

My husband and I have dealt with many of these aspects. Although we were not shocked at the diagnoses, we did go through the grieving process each in our own way. Like most other parents in this situation, we questioned our Lord and heaped blame on ourselves. We have been the recipients of advice, some good, some not so good. We have been subjected to stares in restaurants, stores, and other public places. We have read numerous books, attended seminars, and consulted with professionals. Still everyday presents a challenge. In the end we realize, just as Job did, that God’s answer to us is Himself. He is enough for us and for our daughter, and no explanation is needed. One of my favorite quotes is from Corrie Ten Boom, a lady I admire tremendously: "No matter how deep the pit, God is deeper still." Most of us know that Corrie Ten Boom spent a good deal of time in one of the darkest of pits, a German concentration camp. I simply cannot fathom the depth of her faith, but I know that it was this rock solid faith that enabled her to survive the brutal conditions. When I realize how much joy she had in spite of her circumstances, I am inspired. After all, there are so many people much worse off than I, in all kinds of horrific situations. I also see so many more difficult cases of Autism. I have a friend who has had to exhaust her retirement savings to care for her child. Another friend has had to endure family separation so her son can attend a special school in another location.

Autism is a part of my life and will always be, but it is not the sum total of my life. Our lives have many facets. God has blessed me with so much – a loving husband, a fine home, a wonderful church to attend. However, it is my hope and prayer that the trials our family has experienced will fulfill God’s purpose in our lives - perhaps to refine our character and to enable us to help others in similar situations. Who knows what is in store for us? God is the ultimate parent, and He will take care of Alyssa (The Lord will perfect that which concerns me……” Psalm 138:8). Actually, there is nothing outside His purview, nothing, not even Autism. Praise be to Him!

Please note: In the course of my research on Autism, I have found several web sites that contain excellent information. Several sites are listed here; however they certainly are not exhaustive on the topic of Autistic Spectrum Disorders. More will be added as time allows.

Here's an easy to understand explanation of how the brain functions, the distinct parts and how they are interrelated. Also explains the disconnect in autistic spectrum disorders. http://www.brainconnection.com/library/?main=explorehome/animations.

Here is some excellent material that covers the many facets of autism and gives practical information on how to deal with each one.

http://www.autism-mi.org/general.pdf.

The following website emphasize the behavioral aspects of autism and is especially beneficial for educations:

A great overview of autism is presented here, with videos, news articles, and research essays. A must see http://www.autismspeaks.org/

I love the Gray Center. There is so much for the parent of an autistic child. Also a great perspective from a high-functioning autistic adult, Sondra Williams. http://www.thegraycenter.org/sondrawilliams.cfm.

Helpful insight from a handout I received at an Autism seminar I attended.

http://www.autismspectrum.net/DesktopDefault.aspx?tabid=248

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