mental-health – Connected Growth & Wellbeing

(For Parts 1 and 2 of this blog, click here)

Part 3:

A third paradigm shift I have witnessed in the autism world over the past 30+ years is the expansion of the diagnosis itself. Prior to the DSM-5, the threshold for meeting criteria for an “autism” diagnosis was quite high. However, individuals who displayed a fewer number of symptoms (not fully meeting criteria for autism) were diagnosed with Asperger’s Syndrome or Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). Together, combined with autism, these eventually became thought of as an “autism spectrum.” The DSM-5 removed Asperger’s and PDD-NOS as categories and put all individuals with a certain number of symptoms under one umbrella, the “autism spectrum disorder (ASD).” (We can discuss the shift in conceptualizing whether ASD is a “disorder” in another space).

Over the past several years, the autism spectrum has grown and grown. Individuals who would not have met criteria for any PDD in the past are now being identified with the more nuanced presentations of autism. At Connected Growth & Wellbeing, we regularly recognize that we are diagnosing individuals with ASD who we would not have identified as such 10-15+ years ago.

I believe the diagnostic canvas may continue to shift; I’m curious to see where it goes. There is debate regarding redefining individuals with greater support needs with another label (although the current DSM-5-TR differentiates between three levels for each of the diagnostic areas). Furthermore, it is unclear how much more the spectrum will grow.

Part 4:

Another example of a paradigm shift in the autism world has been in the ways that we support autistic individuals. This has boomed in so many ways, too numerous to detail in a blog.

From my vantage point, moving to a more respectful, person-centered, social-community model is probably the most important. Including individuals in decision-making about themselves, seeking to understand what makes them comfortable, feel satisfied and feel good about themselves, provides them with access to communication, and helps them engage in their communities in the ways that they wish are critical. These concepts are relatively novel to the world of special needs and they are core concepts that we continue to strive for at Connected Growth & Wellbeing.

In conclusion (for now):

With seemingly-ever-shifting ideas, as we and the world grow in our understanding, we do our best to keep up with the shifts! But, at the end of the day, the most important thing is for neurodivergent people (and of course all people) feel and be respected, be provided with all of the tools and supports to promote their ability to communicate, self-regulate, form relationships as they please, and be independent.

As I haven’t written a blog in a long time, it occurred to me that as I passed my 30th anniversary(!) of working with autistic people, this is as good a time as any.

30 years sounds like a very long time (granted the first three were while I was an undergrad), and though it does not feel that long to me in many respects, I realize that the autism world has gone through numerous, ever-changing phases since I first entered it. Here are a few notable ones:

Part 1:

When I was first trained in 1995, we all said “autistic children.” However, some time later, we were told that this term was not appropriate. These were children first, separately from their diagnosis of autism and we should refer to them as “children with autism.”

However, as many of you know, this language has since been deemed disrespectful to autistic individuals’ identity and part of the disease-model. Many autistic self-advocates prefer the term “autistic” to describe themselves. Nowadays, I use the term “autistic individuals” for the most part, but I defer to the preferences of the individual with whom I am speaking (if I do not know, I defer to what is now considered the majority opinion in my community).

For an excellent research study on language preferences in the autism community, see Dr Connor Keating’s work (Keating, et. al, 2022).

Part 2:

“All behavior is communication” is another concept that gained momentum, and later shifted, about autistic and neurodivergent (which was not a term familiar to me in 1995!) individuals. It was a notable realization that individuals’ behaviors may be an attempt to convey ideas to other people.

However there is more recent thinking that this can be too broad of a statement (see: https://www.assistiveware.com/blog/autistic-behavior-always-communication?fbclid=IwQ0xDSwMQyw9leHRuA2FlbQIxMQABHs3NbRQ_NV5oSE_FLprRue61zL3EC19PZzBx_WFvMTHbbVSjXmJKv6QD5hUj_aem_hHkblpGFJxoIMzI6ZjB9FQ).

It seems much more appropriate to say that “all behavior has meaning” which is a tenet of both developmental-relational and more traditional behavioral (i.e., “ what is the function of this behavior?”) approaches. The meaning underlying a behavior may include communication, an indication of sensory or emotional overwhelm, boredom, a “motor loop,” (and difficulties motor planning), among others.

It is critical that we continue to strive to understand behaviors from a holistic, interdisciplinary perspective, including internal (sensory, physiological), developmental, environmental, and interpersonal factors.

Click here for Parts 3 and 4.

Tag: mental-health

30-plus years with the Autism community (Pt 3 & 4)

30-plus years with the Autism community (Pt 1 & 2)