JC's Autism Spectrum

What is Autism?

For almost 2 decades, the Diagnostic and Statistics Manual of Mental Disorders ( DSM-IV),  defined Autism ( Autism Spectrum Disorder) as a variety of disorders known as Pervasive Developmental Disorders.  These are disorders which manifest in developmental delays  in multiple areas of basic functioning skills, usually socialization and communication.  The reason it is called a "spectrum disorder" is because no 2 children are alike in their symptoms.  It is often said that if you know one child with Autism, you know ONE child with Autism.  These delays can range from mild to severe and the symptoms themselves can vary from child to child.  For example, some children are communicative but lack the understanding of social cues and interactions.  This is often the case in children with an Asperger's diagnosis. Other children may be non-verbal and and/or seem to have little interest in social interaction at all, as can be the case with classic autism (the stereotypical Autism that people think of).  And many are in the middle, like JC.   The dichotomy of high vs low functioning Autism is misleading.  Someone may be "high-functioning" cognitively, but may be non-verbal and have low-functioning social skills.  This variety is why Autism is considered a Spectrum Disorder.

The New DSM 5:

Recently a new Diagnostic and Statistics Manual of Mental Disorders ( DSM-5) was released (click here to read more). It altered the description and diagnostic criteria for Autism Spectrum Disorder. Now, There are no subcategories within the Autism spectrum diagnosis (for example Asperger's and PDD-NOS were removed from the DSM-5).  The necessary criterion to diagnose Autism also changed.  In the DSM-IV, there were 3 categories from which symptoms must be present. These categories focused on problems with social interaction, problems with communication, and restricted repetitive and stereotyped patterns of behavior, interests and activities.  With the new diagnostic criteria have been rearranged into two areas: 1) social communication/interaction, and 2) restricted and repetitive behaviors.

Here are the diagnostic criteria from the new DSM-5:

1) All of the following symptoms describing persistent deficits in social communication/interaction across contexts, not accounted for by general developmental delays, must be met:

• A) Problems reciprocating social or emotional interaction, including difficulty establishing or maintaining back-and-forth conversations and interactions, inability to initiate an interaction, and problems with shared attention or sharing of emotions and interests with others.

JC has significant difficulties in social situations where HIS expectations are not being met.  If he is playing HIS game, HIS way, by HIS rules, things are fun and he enjoys social interaction. However, if someone varies from that "scripted" view of how things should go, his anxiety level increased and he is no longer able to function in that environment.
Joint attention is a struggle as well.  He often leads me to an object of interest rather than trying to communicate that interest to me.
For some children, these social issues do not manifest until school age when the demands of social situations become to much for then to handle.

• B) Severe problems maintaining relationships — ranges from lack of interest in other people to difficulties in pretend play and engaging in age-appropriate social activities, and problems adjusting to different social expectations.

JC often prefers to pay by himself, but will play with others when initiated by them. He usually prefers specific toys (cars) or random household objects like bowls and candles.
He has difficulty understanding the necessary social rules in various situations and often doesn't generalize from place to place (for example, he doesn't speak much at preschool, while he does at home).

• C) Nonverbal communication problems such as abnormal eye contact, posture, facial expressions, tone of voice and gestures, as well as an inability to understand these.

JC limited eye contact. This actually surprised me when the doctor mentioned it because I always thought he had adequate eye contact. However, it varies from person to person and he doesn't rely on it as a method of communication. He looks to see, not to relate. His eye contact is fleeting and he doesn't use it to establish "joint attention" (pointing and looking to see if I know what he is looking at).
He also has difficulty mimicking gestures.  He often uses his own version of gestures rather than the actual gesture (for example, he does thumbs up with his index finger extended rather than his thumb; he uses his thumb and index finger to show the number 2 rather than his two fingers; he requests you to follow him by patting his chest, rather than making a sweeping motion with his hand.). These examples are not significant in and of themselves, but they show that when it comes to mimicking, he doesn't view things like gestures from the perspective of the person giving the gestures.


2) Two of the four symptoms related to restricted and repetitive behavior need to be present:

• A) Stereotyped or repetitive speech, motor movements or use of objects.

JC toe-walks, and sometimes flaps his hands in excitement.
He also plays with cars by lying down on his stomach and pushing the in front of his face to see the wheels turn.
He also perseverates in speech (if he says something I have to repeat I back to him exactly as he says it or he will continue to say it)

• B) Excessive adherence to routines, ritualized patters of verbal or nonverbal behavior, or excessive resistance to change.

JC has a very rigid view of the world. He runs "scripts" in his head in any given situation, and if things vary from that "script" he becomes anxious. For example, if we go through downtown and don't turn onto the street to go to school, he becomes upset.
We use visual schedules and social stories to facilitate changes to his expected scripts. I could really talk about this one more, but I have other blog posts devoted to this.

• C) Highly restricted interests that are abnormal in intensity or focus.

This is really the only symptom that I don't see JC having. Some children may be obsessed with trains, others may know everything there is to know about dinosaurs, and some may have an interest in letters and words and can recite passages from books at 18 months old. It can also arise in obsessively repeating an activity with such intense focus that trying to stop that activity causes frustration.

Although he doesn't have these types obsessions, he does have abnormal intensity and focus related to fears and anxiety. We cannot drain the bath water after a bath because he panics and screams. Wind blowing leaves around the yard causes panic attacks as well.

• D) Hyper or hypo reactivity to sensory input or unusual interest in sensory aspects of the environment.

Well, this one needs no explanation. Sensory processing disorder is where we started after all.

3) Symptoms must be present in early childhood but may not become fully manifest until social demands exceed capacities. Symptoms need to be functionally impairing and not better described by another DSM-5 diagnosis.
Obviously JCs symptoms are present in early childhood.
The only other diagnosis that could partially explain his symptoms is a new diagnosis termed Social / Communication Disorder. However, it doesn't take into account sensory issues and rigid behaviors.


Another main difference is the introduction of severity levels. Previously, terms like high-functioning or low functioning were used to describe the severity of symptoms. But these can be misleading because someone who is low functioning on a communication scale may be very high functioning cognitively. The new levels will enable the medical community to describe the level of supports needed based the level severity of symptoms.
Level 1: "Requiring Support"
Level 2: "Requiring Substantial Support"
Level 3: "Requiring Very Substantial Support"


JC's Autism

JC struggles with communication, speech, sensory issues and social interaction. However, he shows more affect than classic autism. In other words, he is interactive, affectionate, attempts to communicate, WANTS to be involved and social. But he doesn't understand the reciprocity needed for proper socialization.  Rather than relying on communication to effectively express his needs or desires, he often seems to assume that others should understand innately what is inside of his mind.
But, JC doesn't fit the "Autism mold" (if there is such a thing), likely because he has been receiving therapy since he was 16 months old.  Although we didn't know at that point that JC was Autistic, we did know he had sensory issues and began therapy and early intervention followed by speech therapy at 2. Even his neuropsychologist mentioned that he had never seen a child receive such early and intensive intervention.  I have no doubt that if he had not received this early therapy, his level of functioning would be much lower than it is and I am so thankful for the wonderful therapists that have made such a difference in his life already!  We have been able to circumvent many issues because of the early therapies and early understanding of his sensory issues especially.  And when you look at each of these issues and symptoms, any one may not affect daily life, but as a group - they impede his development and interfere with daily activities.  Below is a visual that I created to show JC's Spectrum of Autism.  Those items in Red, orange and yellow are the most difficult and have the most impact on daily life.  The others aren't as impeding, but are still prominent enough to be a part of his diagnosis.

He is doing very well, even compared to a few months ago. His speech has exploded and we are making progress in the other areas as well.  The therapies are working to provide him with coping mechanisms as well as helping me to understand "what makes him tic".  My hope is that by the time is is school-aged, he will have made such great strides that he will no longer meet the criterion for Autism.  That does not mean that he will "outgrow" Autism.  It simply means that he will learn to cope, manage and overcome his symptoms.  That is why these years of development are so crucial.

JC is one of those children who was not diagnosed because of the obvious symptoms, and were even told by a developmental psychologist that he couldn't be Autistic because he was social (JC looked at him when he walked in the room and made eye contact a few times).  He likely have fallen through the cracks or perhaps been diagnosed later due to the increase in severity of symptoms as school demands increased.  When JC's social interactions became increasingly troublesome,  I  researched enough to know that the issues he was having were synonymous with autism, even if it wasn't the "classic" non-interactive type. After all, it is a spectrum disorder.

When I found the neuropsychologist that diagnosed JC, I knew right away that I had found the right doctor. He listened to my concerns, never dismissed JC's struggles, and provided an in depth evaluation. That's all I wanted.  I didn't care if he said he had polka dotted monkey disorder... As long as he had taken the time to evaluate and listen. When we received the diagnosis, I agreed with everything he said. He even picked up on things that I hadn't noticed like limited eye contact and joint attention (more explanation later). But he did point out that JC doesn't fit the classic autism diagnosis because he "shows more affect" than expected with classic autism, but he still was on the Autism Spectrum.

For these reasons, I am actually happy about the changes to the DSM criterion. I feel that the new standards better describe the struggles that JC faces, especially the sensory issues (which weren't included at all before).  Although he still scored on the spectrum before, the new criterion portray a clearer picture of his diagnosis.


No matter what the criterion or severity levels... The important thing to remember is that no 2 children are the same. Every Autistic Child's Autism is as different as every non-Autistic child's neurotypicalism. No 2 children are alike... Period.