DH and I been kind of quiet about this and have waited to post, as we are still trying to process/accept the information we’ve been given. But we are ready now to share with others.
Last week we found out the results from all of Stephen’s testing and evaluations, starting 6 months ago when we had our first screening at the Pediatrician’s office, up until now with the team at LSUS. They have confirmed that he has Autism Spectrum Disorder – High-Functioning (also known as Aspergers). He is on the highest end of the spectrum because of his intelligence level (he is brilliant!) and his ability to talk in phrases/short sentences. The fact that he is so high-functioning is really good news to us, as we will be able to help him overcome a lot of the issues he is having. He will start special school this fall and be in a classroom designed for kids just like him!
This diagnosis explains almost everything we have been dealing with for the past 1 ½ - 2 years or so, including some of the feeding problems, with Stephen. We still have to go to the Neurologist in Dallas, as well as have genetic testing done. We do know that there is some genetic pre-disposition for ASD in our family.
I know so many people are wondering what this really means for us and would like to understand, so below I have taken the time to type/copy what our information packet told us about it! PLEASE read it and share if you would like to. :)
*What is Autism Spectrum Disorder (ASD)?
ASD is a complex neurological, developmental disorder that is made up of several symptoms clustered together. It is called a Spectrum disorder because there are varying degrees of ASD which fall on a line, going from the most severe cases to the most high-functioning cases. In the most severe cases, children with Autism will have a much harder time learning, developing, and living a “normal” life.
There is no one specific cause of an ASD, although there are currently many theories. There are 5 main disorders, sometimes called pervasive developmental disorders, which fall under the category of Autism Spectrum Disorders: 1) Autistic disorder (classic autism), 2) Asperger’s syndrome, 3) Pervasive developmental disorder, not otherwise specified, 4) Rett’s syndrome, and 5) Childhood disintegrative disorder.
From one autistic child to the next, there will be more differences than things in common. However, when diagnosing an ASD, there are 3 major points (think of a triangle) that specialists and doctors look at:
1) Impaired Language and Communication Skills
2) Social Interaction and Relational Difficulties
3) Repetitive and Unusual Behaviors
For each child with ASD, one of these 3 aspects can be greater than another and the types of problems or difficulties under each category can be different. There is a saying that goes “If you have met a child with Autism, you have met *one* child with Autism.” Yet all 3 points of the triangle must exist for the child to have a true ASD.
There are many children with more moderate to severe ASD who are non-verbal and have a very difficult time speaking or learning to speak. Most people think that all children with ASD are non-verbal. However, a child with a higher-functioning ASD may have a good vocabulary, but poor expressive communication and difficulty in reading body language or facial expressions.
It is believed that children with ASD are violent, unloving or unable to feel. This is untrue; children with ASD may want to be around other people and enjoy their company, but not always know the proper way of interacting or relating to them. There are children with more severe ASD who are withdrawn and do like to keep to themselves, but this stems from having a hard time relating or knowing what to do/say, not from selfishness or meanness. ASD does not disable a child from being able to feel emotions or give emotion – it just may look different because it is harder to process. It can also affect how they feel pain or bodily functions. For example, an ASD child may not be able to understand the feeling of using the bathroom on their self.
Children with ASD exhibit unusual, rigid, or repetitive behaviors. While all children have their own normal behaviors, children with ASD have behaviors that are abnormal in nature. Some of these behaviors can stem from frustration, anxiety, and inability to express a desire. Some of these behaviors can be similar to OCD tendencies, such as slowly lining up toys in a row rather than playing with them. Other behaviors can be somewhat destructive, and a lot of times these children are more harmful to themselves than to others (like self-injury).
There are other defining qualities and medical issues besides the 3 points above that the majority of children with ASD have. A child with ASD may have all of these, or only a few. Some of these include Sensory Integration/Processing problems/disorder, restlessness and trouble sleeping, gastrointestinal disorders, seizures (epileptic or absence/silent), learning difficulties, lack of self-awareness, difficulties with gross motor and fine motor skills, late onset or lack of developmental milestones, and difficulty completing everyday tasks (such as dressing, feeding, etc…)
Children with ASD do extremely well with intense therapy, appropriate help and guidance, structure and routine, and many other types of intervention. While there is no known cure for Autism, children can overcome some of the difficulties over time, and there is research on various elements for treating it. Early intervention is highly beneficial for kids with ASD.
*What Autism is NOT
There are a lot of misconceptions about ASD. Autism is not a form of mental retardation, a result of bad parenting, a lack of intellect (stupidity) in the parents’ genes, or the child being “weird” or “evil.”
Some more myths about Autism are:
1) “Autism is not real and is just a trendy diagnosis for kids who are not disciplined.”
2) “People with autism should be institutionalized and cannot function in society.”
3) “Kids with autism are not happy.”
4) “Kids with autism should not be around other kids.”
5) “Kids with autism grow up to be mass murderers and maniacs.”
6) “The main sign of autism is lack of eye contact.”
7) “That child can’t have autism because he/she is too smart.”
8) “People with autism are anti-social and don’t want friends.”
9) “Children with autism will just grow out of it.”
There is much information out there about Autism, and not all of it is true. Don’t believe everything you read or hear; talk to a parent of a child with ASD, and don’t isolate them because you think their child is too different. Invite them to do things with your family even if you are unsure how their child will handle it. ASD children need to be loved and accepted; families of children with ASD also need support and acceptance.
More for friends and family:
*All factual information compiled from the American Academy of Pediatrics, AutismSpeaks.org, The Autism Research Institute, and the Journal of the American Academy of Child and Adolescent Psychiatry