My son is diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), on the autism spectrum. I have made it my business to learn all I can about autism. I believe all teachers, even regular education teachers, need to learn about this neurological disorder with a biological basis. I, and many others, believe it is a growing epidemic. The state of California reports a 273% increase in children with autism. Other states have seen similar increases. Many towns are scrambling to create programs to address the educational needs of autistic children. With inclusion many of these children will be placed in regular classrooms.
I previously wrote the article below, which appeared in a family magazine, to simply explain what it is like to be the parent of an autistic child. I wanted new and expectant parents to know the signs of autism. I have left my original title on the article below. When it appeared in the magazine it was titled "A Child with Autism Lives in a World Apart" - an editorial decision with which I did not agree. My son has many problems but he does not live in a world apart. He is a member of our family and is included in everything and participates to the best of his ability. I believe that this is esential for autistic children because, if left alone, they can indeed retreat into their own world.
In addition, the original title reflects my belief that the neighborhood pediatrician has not been ready to deal with autism. My pediatrician is wonderful and open to discussion on many topics related to my son's condition. However, he did not recognize my son's problem. I was the first to notice Ethan's problems and requested that my son be referred to a neurologist. With todays managed health systems many pediatricians do not have the time to spend on interviews, to ask the questions of parents that might reveal a problem of autism. In addition, many pediatricians simply do not receive enough training on this topic. Until fairly recently autism was thought to be a psychological disorder, now the medical community has discovered that it has a biological basis.
AUTISM: WHAT YOUR DOCTOR DOESN’T KNOW CAN HURT YOUR CHILD
By Terry Tunkel
It sounds cliched but for months after our son’s diagnosis of autism I would wake up thinking, "Oh! It was just a nightmare - that didn’t really happen to us." Sometimes I could walk around the house for a good hour while my husband and children still slept and believe that it had been just a dream. Then they’d wake up and force me to face reality. At first the diagnosis was devastating even though it wasn’t a surprise. In my heart I knew my son was different even before he was one year old. He looked through us instead of at us. I told friends and relatives that it was as if he was in his own world. At the two year check up when the doctor asked if Ethan had started talking I answered, "No, not even Mama." Right then I began voicing my fears and telling the doctor my concerns. But the doctor reassured me that many children don’t speak until later and that we should wait and see how my son was doing when he turned three. We went home and for two months I worried. In my own mind I had already begun thinking about autism. My husband agreed something was wrong. We began searching the internet. We learned a great deal about autism and decided that we didn’t want to wait any longer. We pressed the pediatrician for a referral to a neurologist who diagnosed our son with Pervasive Developmental Disorder - Not Otherwise Specified. PDD-NOS is a high functioning autism.
Autism is a developmental disorder characterized by abnormalities in socialization, communication and restricted interests and behaviors. It can be a severely handicapping disorder beginning within the first two and a half years of life. It afflicts predominantly boys. Most children with autism are perfectly normal in appearance. Thirty years ago, if your child was diagnosed with autism, you could expect him to be institutionalized for life. Advances in educational approach have changed that outlook. It is now believed that because of brain "plasticity" you can re-train a child’s neural pathways if you start early enough. However, some pediatricians don’t know how to recognize the signs of autism and in today’s managed care system few even have the time to look or ask the right questions. In most cases it is the parents who realize that something is not quite right, that their child seems to be in another world. Parents of children with autism often report that well intentioned doctors and relatives down-played their concerns and told them "you’re being too sensitive", "plenty of kids don’t start to talk until they’re three or even four" or "its just a phase". Early diagnosis and intervention is critical and can open up a world of hope. Parents must learn to trust their instincts, be knowledgeable and become their child’s best advocate.
We were lucky that, as a teacher and childcare provider, I’ve had a lot of experience with children’s behavior. I even knew a little about autism. But at my son’s two year check up the pediatrician never asked me about odd behavior and I didn’t think to volunteer the information that my son was obsessed to spin things or put inappropriate things on his head. I never told him that my son spent hours making faces in front of the mirror and that this was his primary form of play. Frankly, I didn’t want to realize the significance. My husband and I even joked that Ethan was sure to become an actor because of the amount of time he spent in front of that mirror. After seeing the neurologist and reading everything we could find on the topic we realized that Ethan displayed several of the classic symptoms of autism.
Not all people with autism are like Dustin Hoffman’s character in "Rain Man". They vary in abilities, intelligence and behaviors. Some do not speak, others speak only in limited phrases and some may graduate with a Ph.D. Autism is now considered to be a spectrum disorder with a wide continuum of functioning ability. If a child is diagnosed before the age of three, he may enter the Early Intervention Program (E.I.P.). Through the E.I.P. a child may receive up to two hours of speech, behavioral or occupational therapy funded by the state. All children are eligible for early intervention even without a diagnosis if they have a 25% delay in two or more areas of development or a 33% delay in one area of development. If you suspect a problem with your child contact your county’s office of Special Child Health Services. They can set up a free evaluation of your child to determine eligibility for services. Following this assessment, an Individualized Family Service Plan will be developed to describe and provide the services your family will need. Once a child turns three years of age they are eligible for special education from their local school district. If the district is unable to provide your child with the appropriate or adequate services your child needs he or she may be placed out of district in a private school for children with autism.
The hardest thing about having a child with autism may be the waiting. Waiting for the evaluation. Waiting for the results. Waiting for the program to start. Waiting for progress. My husband longs for the day he can have a conversation with Ethan. He badly wants to know who his son is and what he thinks about. Who is in our son’s cute little head? We are still waiting to find out. A friend I met at a support group put it very well when she said to me, "My son has never spoken or even babbled. I am still waiting just to hear the sound of my son’s voice."
It’s heartbreaking. Sometimes I resent it when I see a happy, "normal" family walking toward me or get angry when friends and relatives call with their problems that are consuming them. I want to scream, "How can you possibly think that’s important? You don’t know what burden and worry really is!" It can be depressing to hear about a friend’s child’s accomplishments. It can be hard to take another parent complaining that their child is bugging them because he never stops talking. Recently, I felt like crying when I saw two brothers roughhousing because my boys don’t have that kind of relationship.
Believe it or not, most times I feel incredibly lucky with my life. Although I don’t know what the future holds for my son - what parent does? Being the parent of a typically developing child doesn’t guarantee your child’s health and safety. Yes, we have to make special plans to ensure that our child will be taken care of when we are gone but all parents should do likewise. I am grateful that my son is loving and affectionate, that he has begun to speak and can use the potty. Other parents are not so fortunate. Occasionally I’m tempted to feel sorry for my son but then I realize what a lucky boy he is. He has a family who loves him and who are all working very hard to help him be the best he can be.
Since my son was diagnosed with autism, I don’t take anything for granted anymore. The challenge to deal with our situation has made me examine priorities and caused me to grow in compassion for others. I don’t make snap judgements about poor parenting skills when I see another mother with a child who’s having a tantrum. I realize now her child may simply not be able to deal with the noise and sound of the grocery store. The mother may just be trying to survive the day and get home with food the family needs.
The poet, Kay Redfield Jamison, writes in his poetry, "I have laughed more often for having cried more often. I appreciate more the springs for all the winters." It’s true as well of having a child with autism. When your child is autistic every word he utters is a miracle. Every accomplishment, no matter how small, is a thrill. Tonight my son said for the very first time, "Let’s go kitchen." Now he can say two different sentences. Hurray!
Individuals with autism may exhibit combinations of some or all of the following signs:
Contact your county Special Child Health Services office if you suspect your child has one or more delays in the following areas of development:
All children are automatically eligible for Early Intervention if they are diagnosed with Downs Syndrome, Autism, Spina Bifida, Cerebral Palsy, Fetal Alcohol Syndrome, or with visual/hearing impairment.