I am blessed to have two children on the spectrum.
With the oldest, we had no experience with autism, and had no idea what we were looking for. I thought it was completely normal that children lined up and organized their matchbox cars by color and type.
I had no idea that other children didn't like the feel of their pants, or that tags in shirts "hurt them".
On the contrary, when Spencer began to show signs of being on the specter, we knew it immediately. We watched him regress over a 72 hour period. That's right - over a long weekend we watched our son, who was only three and speaking in full sentences, regress and by the time the weekend was over, we knew he was on the spectrum.
When I speak to groups about autism awareness, usually I am asked to speak about what I have titled "the first day."
The first day is the day you find out. The day you realize that your world has changed forever.
I have been blessed to have two first days. The second was a lot different than the first.
With Chandler, there was a lot of research, crying, wondering why this happened to our son, and to our family. We had just had our second child, a wonderful little girl, and we wondered aloud - could she also be autistic?
We mourned for a long period of time. We felt lost, wondered if we had done something during the pregnancy to cause this. We simply did not know what to do.
Spencer on the other hand was different. We still mourned, but after crying for ten minutes, we went to work in getting him the early intervention that is so critical.
Every child on the Spectrum is different:
"If you've met one child with autism, you've met one child with autism."
- Stephen Shore, adult with ASD.
ASD impacts three main areas of functioning: communication, socialization and behavior. However, behaviors and functioning can vary widely within and across individuals even if they have the same diagnosis.
John is a seven year old boy who received a medical diagnosis of autism when he was three years old. He does not speak, but uses gestures to make his needs known. When he is not understood, he shows frustration by squealing, throwing himself on the floor and crying. In school, he receives full day instruction in a classroom for children with autism. He can complete simple puzzles and match blocks by color when asked and supervised directly. John does not interact with his peers. He prefers playing alone and does not play with toys in the way they were intended.
Katy is an eight year old girl who was identified by her school evaluation team under that category of autism. After her identification at school, her parents took her to a children's hospital for evaluation where she was diagnosed with Asperger Syndrome. Katy is very verbal and attends a regular second grade classroom. While she can read words at a sixth grade level, her comprehension skills are at a first grade level. Her teachers report that Katy has difficulty interacting with her classmates. She loves to talk about spiders and bugs and has begun her own bug collection. She continually tries to dominate conversations with her peers around the topic of bugs. Katy does not realize that her peers are not interested when they walk away while she is talking.
While both of these examples have ASD, certainly their characteristics in the areas of communication, behavior and socialization vary greatly.
The following is a list of some common behaviors or characteristics you might observe in your child.
* Difficulty in expressing needs (may use negative behavior instead of words);
* Laughs, cries or shows distress for reasons not always apparent to others;
* Delayed speech or no speech at all;
* Has difficulty processing language (may not understand and/ or may take longer to respond);
* Echolaic - immediate or delayed repetition of words of another person (or television, radio, etc);
* Not responsive to verbal cues;
Does not use joint attention - showing or sharing something with another person, this is typically demonstrated by using eye gaze and gestures, particularly pointing, for social interaction.
* May prefer to be alone or appears aloof;
* Difficulty interacting with other children;
* May not want physical contact - cuddling, touching, hugging;
* Little or no eye contact;
* Difficulty initiating conversation or play with others;
* Acts or speaks in socially inappropriate manner (such as speaking too loudly or for too long).
* Difficulty interpreting facial expressions or body language;
* Difficulty understanding and interpreting emotions (self and others).
Behavior (this is the one I am asked about a lot)
* difficulty transitioning from one activity or settling to another;
* Tantrums or meltdowns;
* Spins and / or lines up objects;
* Inappropriate attachments to objects;
* Frequently walks on tip toes (toe walking);
* Stereotypic or self stimulatory behaviors - repetitive movement of the body or other objects such as hand flapping, rocking, flicking fingers in front of face;
* Restricted and persistent interests;
* Insistence on sameness; resistance to change;
Self injurious behaviors;
* Uneven gross / fine motor skills;
* Sensory processing issues; unusual responses to sensory input;
* Apparent over sensitivity or under sensitivity to pain;
* Noticeable physical over-activity or under-activity;
* Eats limited food choices and / or textures;
* Minimal awareness to physical danger;
* Wandering away.
Occurrence of Autism
The prevalence of ASD is increasing. In 2009, the centers for disease control and prevention and the US Department of health and human services reported the prevalence rate is between 1 in 80 and 1 in 240 with 1 in 110 children in the United States having ASD.
This wide range is the result of differences in the finding of various research studies. Based on these estimates, approximately 24,000 children born in the United States every year (assuming the ratio does not change) will have a diagnosis of ASD. There a re currently approximately 500,000 individuals, aged 0-21 with ASD in this country. ASD is more common that childhood cancer, Down Syndrome and juvenile diabetes combined.
Genetics Research and Autism
There is currently no known cause of ASD. During the past decade, scientists made significant breakthroughs in understanding the genetics of autism. Researchers are now focusing on specific chromosomal regions that may contain autism related genes. This has been accomplished by studying chromosomal abnormalities in individuals with autism and by screen each chromosome for evidence of genes associated with autism.
Current theory among autism genetics researchers supports the idea of "complex" inheritance. This means that multiple genetic factors are likely to be involved and may predispose an individual to develop autism. This theory also includes a role for environmental factors. that is, in addition to having a certain combination of autism related genes, exposure to specific environmental factors may be necessary for autism to develop in some individuals. For instance, if one version of a gene makes a person susceptible to a particular chemical, exposure to that chemical could trigger autism to develop. By focusing on the study of genetic factors and determining theory underlying mechanisms, researchers may be better able to pinpoint environmental factors that contribute to autism.
We need to raise funds. We need to further research. Important work is being done, and we all need to find a way to help and continue this great work.
Autism Notes: www.autismnotes.com
Autism Speaks: www.autismspeaks.com
Collaborative on Health and Environment
Human Genome Project: www.ornl.gov; www.genome.gov
Autism society of America: www.autism-society.org
Ohio Center for Autism and Low Incidence
Ohio department of education
Autism Society of Ohio