DSM-5 – A Multitude of Musings

Hi everyone and welcome to my letter H post in the #AtoZChallenge. Today, I will discuss some of the history of intellectual and developmental disabilities.

Throughout history, people with intellectual and developmental disabilities were feared and stigmatized. However, it wasn’t until the mid-19th century that societies in the western world started taking action to take care of them outside of family homes. At first, institutions were more or less educational, based on the idea that people with intellectual disabilities could learn too. However, towards the end of the 19th century, there interestingly was a shift away from educating towards warehousing. This was when large-scale state institutions were built.

An interesting turn involved the work of Wolf Wolfensberger around the mid-20th century. He believed in “normalization”, a term still used today. In fact, I saw it in the job description for support workers at my home. To be clear, I cringe at this idea, because who decides what is “normal”, anyway? Of course, the idea really should be to value intellectually disabled people’s contributions to society as much as non-disabled (“normal”) people’s. However, I personally find this term used when I am refused a plastic coffee mug to drink from, because a ceramic mug is more “normal”. For those not aware, due to my mild physical disability, I find a plastic one easier to hold.

I can’t end this post without touching on the Nazis’ treatment of the intellectually disabled. Initially, they were open about their eugenic “euthanasia” program, using intellectually disabled people to test mass murder techniques on they could later use on other groups such as the Jews. When families and other people started protesting too much, they went on in secret. The usual methods of killing disabled people in this later stage were starvation and medication overdoses.

I also should really touch on the ever-changing terminology surrounding intellectual disabilities. In the early 20th century, people with an intellectual disability were called “feeble-minded”. Then came terms like “idiot”, “imbecile” and “moron”, referring respectively to people with a severe/profound, moderate and mild intellectual disability. Then came “mental retardation”, which wasn’t actually removed as a term from the Diagnostic and Statistical Manual of Mental Disorders (DSM) until 2013. The current term in DSM-5 is intellectual developmental disorder, but intellectual disability is most commonly used.

I am socially awkward. Before I was diagnosed with autism, this was how I saw myself. I even had an E-mail group on Yahoo! Groups titled socially_awkward. This was for adults and teens with social issues of any kind.

Indeed, the main symptom of autism is still seen as social communicative difficulties. I do have them, mind you, but I don’t see them as my main symptom of autism. My main symptom is overload, both cognitive and sensory.

Then again, like I said, I do have issues with social interaction. I haven’t had a friend other than my husband since special education junior high in 1999. I tended often to be too clingy. In this sense, I guess I exhibited the “acctive but odd” style of social interaction that is often exhibited by males on the autism spectrum and is seen as the least impaired style, common in those diagnosed with Asperger’s Syndrome. Yet I do experience severe impairments in other areas.

When I was older, I tended to exhibit a more passive interaction style. Then again, when at meetings, I can still be dominating. This is probably why the people in the Dutch DID group decided I wasn’t safe. They kicked me out, officially because they believed I didn’t have DID or had imagined it, but they cited as reasons for this that I talked bookish about my issues. Well duh, that’s typical of autistic active-but-odd interaction.

But back to how mild or severe my autism is in terms of social interaction or other symptoms. I was diagnosed as ASD level 1 under DSM-5, so the mildest severity level. The reason is probably that I can hold down relatively normal-sounding conversations in structured settings and with people of my intelligence level. At least if they’re focused on me, which diagnostic interviews usually are. I cannot keep up a conversation about someone else for long. This may be why some people, including my parents, used to see me as selfish. I tend to want to dominate or talk about myself. That is, I don’t really want to, but it is the most natural.

In the second symptom category of autism, which is restricted and repetitive behaviors, I was also diagnosed as level 1. I disagree, particularly because sensory issues have been added to the criteria and I’m severely impaired with regard to that. I stim all the freakin’ time, for example. I feel I should definitely be level 2 on this symptom category.

This post is part of #SoCS, for which the prompt this week is “social”.