Posted by Tomonica
August 8, 2012 – Silas, Robert, and I drive down to Sacramento. I’m a nervous wreck on the verge of having a panic attack for the entire hour drive. There are a million things running through my head and sitting still is absolutely impossible. I have tried to prepare myself for the day ahead of me. I already have filled out too many questionnaires about Silas’ behavior to count. I know what course the appointment we are about to have is going to take. I’m prepared…at least I think.
We get to the office and to my relief there are a ton of toys in the waiting room geared toward children with different abilities. Silas seems to enjoy himself while I fill out, yet again, more paperwork and surveys. Then the psychologist comes to get us. First I go in while Robert stays outside and plays with Silas. The first step in the assessment process is to interview the parents to obtain a social and developmental history and other information about the child’s current level of functioning. Questions are aimed at determining the onset of the disability, such as if we noticed early communication problems, awkward social interactions, unusual play, or hyper- or hypo- sensitivity to sensory stimuli. Information about family history of illness or psychopathology was also obtained during this interview.
The next portion of the appointment Robert and Silas were brought in. The psychologist then performed the following assessment. The Autism Diagnostic Observation Schedule (ADOS) is a standardized assessment that utilizes a variety of structured and unstructured activities to elicit a wide range of behaviors associated with autism spectrum disorders. The ADOS examines the following areas: communication, social interaction, play, imagination, and stereotyped behaviors and restricted interests. This measure uses four different modules that are each individually designed for a particular developmental age and language ability level (from nonverbal to verbally fluent). The activities are meant to be enjoyable for the examinee while providing a standardized context for interactions. After the administration of the ADOS, examiners use their notes of observations collected throughout the evaluation and assign ratings in specific categories based on degree of abnormality. These ratings are used to determine an ADOS classification, which is used in conjunction with other assessment information to determine an overall diagnosis.
There were also other assessments performed and scales used but I am not going to go into detail for them due to brevity. If you would like to know more feel free to look them up.
- Adaptive Behavior Assessment System-Second Edition
- Mullen Scales of Early Learning-Visual Receptive Scale
Overall, I felt super sad during the assessments and questionnaires from this appointment. Watching Silas’ interaction and actions was tough. He seemed to be in his own little world. After everything was completed the psychologist went over everything after she had given him scores in each area. She informed us that Silas showed the presence of delays in social interaction, language used in social communication and symbolic or imaginative play prior to 36 months. All of these are criteria of Autism. Silas demonstrated 9 criteria overall and met the requisite diagnostic criteria for Autistic Disorder.
The following is Silas’ actual diagnosis using DSM-IV TR.
Axis I (299.0) Autistic Disorder
(315.32) Mixed Expressive-Receptive Language Disorder
Axis II (319.0) Intellectual Disability – Severity Unspecified
Words cannot even begin to explain how I felt after hearing this. I knew it wasn’t really the end of the world but to me that is how it felt. I had known for months that what I had just heard confirmation of was true. My mommy instincts had told me from so early on that something wasn’t right. There was so much emotion built up inside of me but I didn’t want to let Silas, or anyone else for that matter, see me cry. I kept it bottled up until I was alone. I honestly didn’t know what to do with myself at that moment.
I finally had something to “call” Silas’ actions and behavior. All of the times he freaked out going into Walmart, eating at restaurants, and anywhere else in public now had validation. People judgingly looking at us because he was having a meltdown. It wasn’t his fault and I knew that, but they didn’t. There were too many people, it was too loud, the lighting wasn’t right…the environment wasn’t right for him. It was sensory overload and at the time I wish I had known that.
I want to let people know how important it is to voice your concerns about your kid(s). If you feel something isn’t right you are probably correct. You know your child better than anyone. Do NOT let doctors dismiss your concerns. If they tell you something that you do not agree with, get a second opinion. I know that if I wouldn’t have spoken up Silas still would be struggling and not have a diagnosis.
Always, always have hope.
If anyone has any questions about the process of what we went through please ask me. I left a great amount of detail out because I could probably write a book about it.