Autism Awareness Month is April 2010

What is autism? What causes it? How is autism detected? What does PDD-NOS spectrum mean? How will this condition affect my child? These questions will be discussed in this article from the point of view of someone with a background in psychology and a four year old daughter who is on the autism spectrum as PDD-NOS.

When I was a freshman in college, our teacher assigned us to visit an area where we would be outside our comfort zones and then write a paper. At the time, I did not realize the place I chose to visit-a school for mentally and physically handicapped children would impact my life not solely in the visit but in memories after giving birth to a child on the PDD-NOS spectrum in July 2005.

Like many people, I had an impression of how those affected by autism behaved. During my visit, I encountered several children diagnosed with Down Syndrome, one who could not walk, see, or speak, another had no characteristics I could pick up on to determine her diagnosis outside of possible cognitive impairment, and another had autism.

This young man was severely affected. When I learned my daughter had PDD-NOS, I feared she would react as this man. He rocked back and forth, did not make eye contact, was nonverbal, could not understand he was not supposed to masturbate at school, had mood swings, and committed other behaviors typical of what many people see as autistic.

So, what is autism? People without autism are seen as being neurotypical while those who have the condition are not typical. Autism is a disorder involving neural development leading to impaired cognitive and social advances. The condition may alter how nerve cells and synapses connect and organize within the brain. A child who has been diagnosed with this condition may have restricted and repetitive behavior. The young man I previously mentioned used rocking back and forth as his repetitive behavior.

I did not realize autism is a disorder with a large spectrum until my daughter was diagnosed. At two years old, she was completely non-verbal. Some damage was done to her throat during a tonsillectomy at thirteen months old so we believed her language delays related to the damage. I told the physician my concerns at her 18 month checkup. He noted her obvious lack of making any noises and referred us to a place that would help her. Though she continues to need speech at age 4 ½, she has made great strides.

At the time of my daughter's diagnosis, I did not accept her having PDD-NOS. The physician stated she was as much as nonverbal but did give eye contact (lack of eye contact and attachment is sometimes associated with Asperger's Syndrome-a higher functioning form of autism lacking cognitive development and language delays). My daughter had significant motor delays and scored low on overall knowledge. She did not fit the classic diagnosis but did fit enough characteristics to be placed on the PDD-NOS spectrum. The PDD-NOS spectrum is the diagnosis used when autism and Asperger's Syndrome criteria are not fully met. The PDD-NOS acronym stands for pervasive developmental disorder not otherwise specified.

The cause of this condition is usually unknown. There is some speculation childhood vaccinations may play a role. My daughter's cause of PDD-NOS is known because she has Cowden Syndrome-a PTEN mutation. About 20 percent of those with this condition have autism as well. Studies have been introduced in recent years asking whether children on the autistic spectrum should have a test for PTEN mutations. Because PTEN mutations can cause many problems in addition to autism, it may be important to genetically test these children.

Autism may be caused by other rare genetic effects, exposure to agents that cause birth control defects, heavy metals, and even pesticides. The mechanics behind the condition are unknown. Generally those diagnosed with autism rather than Asperger's Syndrome or PDD-NOS are more greatly affected in delays. Normally children affected by Autism, Asperger's Syndrome, or PDD-NOS are identified before the age of three years old. The impairment in social interaction, cognitive advances, and restricted behavior patterns usually cause the parent concern and the child is tested.

The most difficult question to answer is how a diagnosis on the spectrum will affect your child. The answer will depend on the severity of your child's affliction. My daughter performs at a cognitively normal level. She continues to have difficulty in processing language but has made wonderful improvements. Her inability to express herself with language has caused problems in the past but they are lessening. Social skills are something parents of children on the spectrum need to encourage. My daughter is doing fine in forming friendships at her preschool. I have concerns for when she begins Kindergarten this fall.

The most important words I can say to a mother reading this who suspects her child has delays are to take your child to the physician and have him or her tested. The earlier the intervention with this condition, the less likely it is to have a negative effect on your child's life. Mothers know their children best and a lot is to be said for instinct.

Children on the spectrum are different from us but no less valuable as individuals. It is suspected some well-known individuals had Asperger's Syndrome-such as Isaac Newton and even Albert Einstein. Do not assume your child's quality of life will be affected entirely in a negative manner by this condition. Those on the autistic spectrum may not process their thoughts as the ordinary person but they are no less valuable.