Autism

About Autism

Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. With the May 2013 publication of the new DSM-5 diagnostic manual, these autism subtypes will be merged into one umbrella diagnosis of ASD.
ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.

How Common is Autism?

Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 88 American children as on the autism spectrum–a ten-fold increase in prevalence in 40 years. Careful research shows that this increase is only partly explained by improved diagnosis and awareness. Studies also show that autism is four to five times more common among boys than girls. An estimated 1 out of 54 boys and 1 in 252 girls are diagnosed with autism in the United States.
ASD affects over 2 million individuals in the U.S. and tens of millions worldwide. Moreover, government autism statistics suggest that prevalence rates have increased 10 to 17 percent annually in recent years. There is no established explanation for this continuing increase, although improved diagnosis and environmental influences are two reasons often considered.

What Causes Autism?

Not long ago, the answer to this question would have been “we have no idea.” Research is now delivering the answers. First and foremost, we now know that there is no one cause of autism just as there is no one type of autism. Over the last five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. A small number of these are sufficient to cause autism by themselves. Most cases of autism, however, appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development.
In the presence of a genetic predisposition to autism, a number of nongenetic, or “environmental,” stresses appear to further increase a child’s risk. The clearest evidence of these autism risk factors involves events before and during birth. They include advanced parental age at time of conception (both mom and dad), maternal illness during pregnancy and certain difficulties during birth, particularly those involving periods of oxygen deprivation to the baby’s brain. It is important to keep in mind that these factors, by themselves, do not cause autism. Rather, in combination with genetic risk factors, they appear to modestly increase risk.

What treatment is available for autism?

Each child or adult with autism is unique and, so, each autism intervention plan should be tailored to address specific needs.
Intervention can involve behavioral treatments, medicines or both. Many persons with autism have additional medical conditions such as sleep disturbance, seizures and gastrointestinal (GI) distress. Addressing these conditions can improve attention, learning and related behaviors.

Early intensive behavioral intervention involves a child's entire family, working closely with a team of professionals. In some early intervention programs, therapists come into the home to deliver services. This can include parent training with the parent leading therapy sessions under the supervision of the therapist. Other programs deliver therapy in a specialized center, classroom or preschool. (Learn more about Early Intervention.)

Typically, different interventions and supports become appropriate as a child develops and acquires social and learning skills. As children with autism enter school, for example, they may benefit from targeted social skills training and specialized approaches to teaching.
Adolescents with autism can benefit from transition services that promote a successful maturation into independence and employment opportunities of adulthood.

*Previous text courtesy of www.autismspeaks.org

Our Experience

Carson has only had this diagnosis for a couple of weeks now (at the time I wrote this original post), so I am terribly new at this.  I have read much information already, but I have no pearls of wisdom or stories to offer up yet.  I will say that I have already realized that Carson was likely born with this issue, as I am seeing now many social developments in Maggie that I never saw in Carson, and never realized were missing since he was my first child.  I know all children develop differently, but these are major differences I never thought about before.  Mainly that Carson was always self-entertained, never played the give-and-take game, never tried to get our attention by getting in our faces, and people who only saw him once in a while always described him as "serious".  That's not to say all these things are abnormal, but they were clues that we didn't pick up on before.

With Carson, his delay in speaking was the first noticed sign.  The person who caught it first was his PKU specialist at the Sparks clinic, who also happens to be a pediatric neurologist who works with developmental delays.  She suggested I send him for speech and hearing testing at the Children's outpatient clinic.  His speech was severely delayed, but his hearing is fine, which I knew.  I was so resistant to having him tested at first, because you never want to admit something is wrong with your child, but I'm SO glad I gave in!  Early intervention is best for development, so the sooner, the better!  The ball kept rolling from there.  We began to pick up on his odd habits the older he got, and my reading told me those could be signs of autism.  I still didn't want to admit that, either.  Dr. Rutledge suggested, after Carson had already started speech therapy through Early Intervention, that we apply to the Sparks Clinic for developmental testing.  We waited almost one full year on the waiting list before we got him tested.  This round of testing showed, of course, he still had a significant speech delay, plus he showed a delay in fine motor skills and verbal cognition, which I guess you could describe as understanding what he is being TOLD to do.  Due to these results, the consensus was that we should send him for autism testing.  Thankfully, we were placed on the waiting list back to the original application, so we only waited 2 months.  Now here we are, with the official diagnosis of autism.  It has been a somewhat long road, but we are so thankful to have the answers we needed to get Carson the help he needs.

Carson has been receiving speech therapy through the school system since he turned 3, and now we just added occupational therapy as well.  I am so thrilled to see him work so hard, because he is such a super-intelligent boy, and a hard-working, determined perfectionist.  He wants to get everything right.  I hope he keeps this desire throughout his lifetime, and I have no doubt he will be successful.

2014  Updates

It has been a year now since Carson was originally diagnosed with autism.  He has been receiving speech and occupational therapy, both in the school system and in private offices.  He has grown a tremendous amount in one year!  His communication has improved too much to even measure, and his personality is so evident now, he just shines through.  I can't believe how much he has changed!  It has been an amazing transformation to watch, and I know it is not over yet.

Carson has attended preschool at the Child Development Center since this past fall.  We were able to send him there for free due to his diagnosis, and I felt it was the best thing to do for him at this time to help him transition from being at home with grandparents and me to being around other adults and children his age.  He has done wonderfully in school and everyone who works with him is excited about him attending kindergarten this coming fall.  I bet they are not terrified like I am!

I have learned much over the last year, and look forward to the future and being able to learn more how to help Carson grow and thrive.  Some days are challenging, while some days feel perfectly normal.  It is life.  It is OUR life.  And we love it just the way it is.