Autism Acceptance Day 14
TL/DR: Diagnosing autism isn't straight forward or easy. It is very dependent on an individual's functioning at the time.
I was originally with Asperger’s Syndrome in 2011 when I was 38 years old. I was teaching at a boarding school for students on the Autism Spectrum and was having difficulties with the administration at the school. So, I went to see a psychologist to see what my issues might be and to possibly obtain a diagnosis. So, I spoke with the psychologist over a few appointments, and told him that I thought I might have Asperger’s Syndrome, so he pulled out his copy of the DSM-IV, and we reviewed the diagnostic criteria for Asperger’s Syndrome: LINK.
Basically, there are 6 criteria for the disorder:
Qualitative impairment in social interaction (in two of 4 categories);
Restricted repetitive patterns of behavior, interests and activities matching one of three areas;
It causes significant impairment in areas of functioning, (social, occupational or other);
No delay in language (single words by age 2, phrases by age 3);
No delay in cognitive development, self-help skills, adaptive behavior and curiosity about the environment (check the link - that’s the actual wording they use…);
Criteria not met for another disorder.
So, basically, most of these criteria from the DSM-IV are related to childhood behaviors and development of different skills in childhood. So, it was something diagnosed in children, not adults. To be diagnosed as an adult, the psychologist needed me to remember back into my childhood and what my parents had told me about my development. So, we went over it through 3-4 sessions and ticked off different boxes until I hit all the criteria for it.
I met two of the criteria in the first category. They were:
failure to develop peer relationships appropriate to the developmental level. I was having difficulties with the administrators and most of my social interactions were with the students I was teaching;
impairments in using nonverbal behaviors. I would close my eyes when speaking with someone, and I would look at their mouths while they were talking. I also didn’t exhibit typical nonverbal behaviors when in social situations. I had difficulty taking turns speaking, and small talk was impossible for me;
In this area, we talked about my early fascination with dinosaurs. I would go find out as much information as I could about them, and at one time, I was sent to the library in elementary school to look up about paleontologists and how to become one. My teacher had NO IDEA what a paleontologist was; I also spoke about a number of other special interests I had, such as the paranormal and ghost hunting.
This area was, in his perspective the main indicator for my diagnosis. It was causing me difficulties in my everyday life. We talked extensively about this area, since this is not static. There are some times when my Asperger’s doesn’t affect my daily functioning. However, there are other times that my lack of social skills can cause a lot of stress for me. It’s at these times that I end up having problems. During 2011, I was constantly under pressure from the school’s headmaster and my direct supervisor. They scrutinized every detail of my work and teaching. I was also in the middle of a Worker’s Compensation suit against the school (much to the chagrin of my wife), and my depression was in full swing because of this increased stress. I couldn’t seem to do anything right, and when I did say or do something, my supervisor would bring my attention to it and tell me all the ways that whatever I did was wrong.
I wasn’t delayed in my language development. I was able to read at 2 years old.
My cognitive development was not delayed either. As the resource room teacher told my parents, I was really smart, just quiet.
I did not meet the criteria for any other diagnosis.
My initial diagnosis was what is called a psycho-social diagnosis. It is based on observable behaviors, and does not test any intellectual or learning abilities. There is one main problem with this type of diagnosis - it is very much based on functioning in the present moment. However, Autism and Asperger’s Syndrome are situational. In one situation, my AS might not have a noticeable effect on my functioning, and I seem pretty neurotypical. In another situation, though, it might have an extreme effect on me, and I might need significant supports to get through.
As an example, in 2011, I was having difficulty with my headmaster and supervisor. The added stress from having to interact with them reduced my social skills, which then caused more problems with those individuals. It was a negative feedback loop that I could not get out of. However, in my current job, I am allowed to work from home. I am creating classes for new supervisors to teach them how to deal with the people under them. Most of my interactions with others is online or over the phone. I am good at what I do, and my limited social skills are not affecting my day to day job.
So, a psycho-social diagnosis doesn’t take into account the functioning in different situations. And for a lot of people on the spectrum, they may seem totally competent one day, and the next day, they seem to have lost all ability to do anything. When working with someone like this, you need to look at more than just the individual, but their environment, those around them and all different aspects of how they are behaving. Because it’s never just one thing, never just one day, but a combination of everything. This is why there’s more to diagnosing autism than just observable behaviors.
EDIT: So, this post just went live after struggling for a while about what it should be about, and how to make it meaningful to everyone reading. However, I finished late last night (being 51, 10:00 is late for me to go to sleep), and was at that point exhausted. However, my dog (Leo) is 15 and an old man of the dog world, so he has to get up to go out in the wee hours of the morning. I figured as long as I was already up, I would see if my post posted - it did. Imagine my surprise on reading it to find that I never included links on the topic from today so, if you were interested in more expert thoughts about diagnosis and the intricacies of the level system, you would have an easy set of them to get started on your journey. So, here they are:
LINKS: Understanding the 3 levels; What is Asperger’s Syndrome; DSM-IV Criteria for Asperger’s Syndrome; ICD-10 Criteria for Asperger’s Syndrome; Why Asperger’s Syndrome is no longer a diagnosis
NOTE: There are two primary manuals that are used in the mental health field for diagnoses - The DSM (Diagnostic and Statistical Manual) and the ICD (International Classification of Diseases). The DSM is primarily used in the United States, as well as some other countries as an additional tool (like Australia, and is published by the APA (American Psychological Association) and is currently on version 5 (DSM-5; 2013). The ICD is published by the World Health Organization and is currently on version 10 (ICD-10; 1992). So, just like Metric and Imperial units, we in the US are in the minority using the DSM, and the APA tends to focus more on diagnoses that can be helped with pharmaceuticals. The ICD is more widespread and its criteria for different diagnoses do not appear to be as difficult to follow, having less boxes that need to be checked off. I tend to appreciate the ICD-10 more than the DSM-5.
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I hope for you to be happy, be kind, and know how much I appreciate you. - Dave