As I started this blog and the enormous amount of research into Autism therapy, I realized that I don't really understand my son's diagnosis. How am I supposed to come up with a treatment plan when I don't fully know what needs treatment? I can talk basics but the truth is I just didn't know what the dr's have determined what was wrong with him. Personally, I don't think there is anything wrong with Xavier - I used to tell people he had a social disease, he just doesn't fit into society. As he gets older that becomes something that is more apparent. As a toddler, I had a really difficult time explaining to the drs that something was going on with him.
So the things I know about Xavier are:
1. He has a terrible time sleeping.
2. He gets anxious and overly emotional about things that aren't really relevant (for example, he'll refuse to go into the store with us because he saw a cat that looked like our cat that died two years ago and he is far too sad to go shopping, he might even cry. or he goes to the dr's office and someone in the next room is getting a shot which sends Xavier into an absolute panic because he might need a shot even though he's there for the flu. These are made up examples but not far from the truth.)
3. He has a very difficult time staying focused.
4. He has a need to constantly move. When he was 4-5 I used to use his tv watching as an example. He would watch tv, absolutely focused mentally (I know I just said he lacks focus but tv is mesmerizing) on the show but his body would be up in the middle of the floor dancing even though the show doesn't have music. Now that he's older he can spend some time holding still but not much. He spins in chairs or taps fingers/feet when he is supposed to be focusing.
5. He has a hard time relating to his peers. He is well loved by the little kids in our neighborhood. Even though he's 14, the 9-10 year old boys are always coming to see if he can play. We have to have lots of discussions about appropriate touch and behaviors because he is so much older now. They even want him to spend the night which we don't allow. He, also, seems to do okay relating to adults. All his teachers tell us that he loves to engage them in conversation but won't really talk to his classmates.
6. He's incredibly smart but is nearly failing all his classes. This boy has a high IQ (I don't know what it is because the therapist did not release that information to us) but is barely squeaking by with D's. He's in remedial classes and will probably have to take the same math class for the 3rd year in a row. We don't know why he can't keep up in a classroom.
7. He doesn't understand social cues nor appropriate touching. When talking about appropriate touching, I'm not saying he's molesting the neighborhood children. I'm talking about not hitting or pinching or pushing. He likes to tackle people as a sign of affection but we're struggling with letting him know that it's not appropriate - it hurts people. He'll pull on someone's arm or clothing to get their attention instead of talking to them. He's very tactile, meaning he likes to experience the world through touch, but he's 5'9" and 180 pounds which makes for a very large and sometimes painful tactile experience for the person receiving his touch.
8. He still puts inappropriate items in his mouth, such as pennies he finds on the ground or the wire from a pen. He'll take things apart so he can chew on them.
As a small child these behaviors are normal but I knew right away that they weren't but I couldn't find the words to explain.
Now that he's 14, it's become obvious to the rest of the world and now somehow I am supposed to do something about this. I'm a little frustrated because I don't know how to do it. So I thought the first thing to do is understand it. Xavier was diagnosed with Pervasive Developmental Disorder, Attention Deficit Hyperactivity Disorder with Anxiety. I had always believed that PDD was in the Autism spectrum, looking at the NIH definition I realized I had it all wrong, Autism is under PDD which doesn't really help me with anything but I can begin to realize that I was looking at this all wrong.
Here are the definitions and websites for those definitions to his diagnosis. I had a difficult time getting a real definition of anxiety but included the information for Generalized Anxiety Disorder.
The diagnostic category of pervasive developmental disorders (PDD) refers to a group of disorders characterized by delays in the development of socialization and communication skills. Parents may note symptoms as early as infancy, although the typical age of onset is before 3 years of age. Symptoms may include problems with using and understanding language; difficulty relating to people, objects, and events; unusual play with toys and other objects; difficulty with changes in routine or familiar surroundings, and repetitive body movements or behavior patterns. Autism (a developmental brain disorder characterized by impaired social interaction and communication skills, and a limited range of activities and interests) is the most characteristic and best studied PDD. Other types of PDD include Asperger's Syndrome, Childhood Disintegrative Disorder, and Rett's Syndrome. Children with PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak at all, others speak in limited phrases or conversations, and some have relatively normal language development. Repetitive play skills and limited social skills are generally evident. Unusual responses to sensory information, such as loud noises and lights, are also common.
http://www.ninds.nih.gov/disorders/pdd/pdd.htm
Autism (sometimes called “classical autism”) is the most common condition in a group of developmental disorders known as the autism spectrum disorders (ASDs).
Autism is characterized by three distinctive behaviors. Autistic children have difficulties with social interaction, display problems with verbal and nonverbal communication, and exhibit repetitive behaviors or narrow, obsessive interests. These behaviors can range in impact from mild to disabling. Autism varies widely in its severity and symptoms and may go unrecognized, especially in mildly affected children or when more debilitating handicaps mask it. Scientists aren’t certain what causes autism, but it’s likely that both genetics and environment play a role.
http://www.ninds.nih.gov/disorders/autism/autism.htm
Attention deficit-hyperactivity disorder (ADHD) is a neurobehavioral disorder that affects 3-5 percent of all American children. It interferes with a person's ability to stay on a task and to exercise age-appropriate inhibition (cognitive alone or both cognitive and behavioral). Some of the warning signs of ADHD include failure to listen to instructions, inability to organize oneself and school work, fidgeting with hands and feet, talking too much, leaving projects, chores and homework unfinished, and having trouble paying attention to and responding to details. There are several types of ADHD: a predominantly inattentive subtype, a predominantly hyperactive-impulsive subtype, and a combined subtype. ADHD is usually diagnosed in childhood, although the condition can continue into the adult years.
http://www.ninds.nih.gov/disorders/adhd/adhd.htm
What is Generalized Anxiety Disorder?
Generalized Anxiety Disorder, GAD, is an anxiety disorder characterized by chronic anxiety, exaggerated worry and tension, even when there is little or nothing to provoke it.
Signs & Symptoms
People with generalized anxiety disorder can't seem to shake their concerns. Their worries are accompanied by physical symptoms, especially fatigue, headaches, muscle tension, muscle aches, difficulty swallowing, trembling, twitching, irritability, sweating, and hot flashes.
http://www.nimh.nih.gov/health/topics/generalized-anxiety-disorder-gad/index.shtml
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