originally published September 17, 2013
Part 1: Losing Your Diagnosis?
Part 2: (you are here)
Part 3: Diagnostic Criteria: Section B
Part 4: Diagnostic Criteria: Section C
Part 5: Diagnostic Criteria: Section D
Part 6: Diagnostic Criteria: Section E and Severity Levels
Part 7: Development and Course: Part 1
Part 8: Development and Course: Part 2
Part 9: Development and Course: Part 3
Part 10: Development and Course: Part 4
So, there are a lot of things I am almost bursting to talk about in the DSM-5, but I’m going to set them aside for later posts because I’m guessing that the number one thing people want to know is, “what are the new diagnostic criteria?”
I gave a taste of that yesterday when I quoted the note that says that *EVERYONE* who has a DSM-IV diagnosis is grandfathered. You all get to keep your diagnoses. But what are they using for people being newly evaluated?
If you are familiar with the DSM-IV criteria, you remember they have a sort of buffet going on: chose this many items from list A, this many items from list B, and so on. The new criteria have one “two or more items from this list” section, but most of it is absolute — you have it or you don’t. So where the DSM-IV criteria allow for there to be 3129 different permutations of diagnostic traits that result in an autism spectrum diagnosis (thank you, Alyssa, for doing that math!) The DSM-5 has significantly cut down on the “wiggle room.”
Of course that has people worried! Because autism is a pretty broad spectrum and there are some very diverse ways of manifesting it. I look at my Autistic self and compare it to: my Autistic friends; famous Autistics like Temple Grandin, Lianne Holliday-Wiley, Rudy Simone, Wendy Lawson, Jerry Newport, etc.; Autistic children of friends; etc. and I see a pretty wide range of difference. How can we all fit into one narrow set of criteria?
Well, let’s look at that. There are five main sections (A, B, C, D, and E) and I’m going to spend today and the next four days looking at them, one at a time. So, let’s see what section A (on page 50 of the DSM-5) says:
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):
1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
Specify current severity:
Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).
(Don’t worry: we’ll get to severity level and Table 2 in a future post.)
Okay, see what they did there? They didn’t give the pick-and-choose options we’ve grown used to seeing but they gave illustrative examples of the *range* of things that fit that criteria. That does two things: first, it helps people to get a better grasp of what they mean when they say, for example, “deficits in social-emotional reciprocity”; and, second it shows that a person can be diagnosable whether they are completely sitting in the corner, staring at the wall, not responding when you call their name or whether they are approaching you and engaging with you but doing it by presenting sort of a “wall of words” where they are “monologuing” about something really important to them but forgetting to stop and let you share, too.
That’s huge, because the difference between the two people I just described is pretty huge, but the difference is also not huge because both are Autistic. The two hypothetical people I described are part of the same “tribe” of people. If you look at them, they will seem totally different . . . which is good, because they are not the same person! But the neurology that is underlying those two very different types of relating (or not relating, if you wish) to others is of the same stuff.
Also, did you notice that it says, “currently or by history”? Does the person being considered for diagnosis have these traits now or did they use to have them when they were younger but have developed and grown away from some of them? That’s a big deal, too. As you will see, there are other considerations for an autism spectrum diagnosis, but the person who has become “indistinguishable from their peers” (whatever that means. It is a problematic phrase as Alyssa and Kassiane are currently exploring in their blogs) might still be diagnosably Autistic. That’s something to consider before telling someone something like, “you don’t look Autistic.” There are many aspects of autism that are not immediately visible to the eye.
And there is something I like to say, especially when people wonder why I don’t resemble their six-year-old Autistic child: “developmental delay does not mean developmental halt.” We Autistics continue to develop and grow throughout the course of our lives. At age 46, I am still growing and developing in very dramatic and noticeable ways while non-autistic people do tend to get pretty solid by their twenties and don’t really change a lot afterwards. I’m not making a value judgment! Both ways of developing are valid. I’m just pointing out a huge difference and I am very glad to see that the authorial committee of the DSM-5 appears to have noticed that, too, because you will see many different places in the text where they indicate a deep understanding of the ways that Autistic people change over time.
So that’s today’s take-away: We no longer are choosing two or three things off a longer list. We have a fixed list of three things with section A: social-emotional reciprocity, nonverbal communication behaviors, and relationships with others. But within each of those three things, we have a range of different ways of being that would fit into that category. And each individual can express these criteria in a range of ways over the course of their life.
I welcome discussion of the material I’m posting in this DSM-5 series. And I will permit any comment anyone wants to make, so long as it is not advertising spam or something that reveals another person’s private information or otherwise threatens others. Please do try to be civil with one another, but know that during this discussion series I will not be practicing censorship at all — feel free to say what you really think. I promise you it’s okay, even if I don’t agree with you. I want this DSM-5 series to be a chance for people to really talk these ideas out without fear of reprisal.
If you have a question specifically for me about the DSM-5 entry or anything related to this discussion, do call my attention to it by addressing me specifically (for those who might not know, my name is Sparrow, so just start the comment with “Sparrow, [insert question]”) and I will do my best, within the constraints of my time and knowledge, to answer.
Thanks for reading and please do stay tuned! There is a lot of material in the DSM-5 and I am going to be spending a lot of time covering it, so keep coming back and I hope you are enjoying this!