When a Number is Just a Number, Or Why I'm Sticking with BAPpy

While browsing facebook, I ran across a friend's posting of a link to a diagnostic test for autism and Asperger's that I hadn't run across before,The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R). According to the abstract,

The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) is a valid and reliable instrument to assist the diagnosis of adults with Autism Spectrum Disorders (ASD). The 80-question scale was administered to 779 subjects (201 ASD and 578 comparisons). All ASD subjects met inclusion criteria: DSM-IV-TR, ADI/ADOS diagnoses and standardized IQ testing. Mean scores for each of the questions and total mean ASD vs. the comparison groups’ scores were significantly different (p < .0001). Concurrent validity with Constantino Social Responsiveness Scale-Adult = 95.59%. Sensitivity = 97%, specificity = 100%, test–retest reliability r = .987. Cronbach alpha coefficients for the subscales and 4 derived factors were good. We conclude that the RAADS-R is a useful adjunct diagnostic tool for adults with ASD."

The 80 questions will undoubtedly strike those familiar with autism as being somewhat stereotypical; there are no options for "sometimes," either. The choices are now and as a child, now as an adult, only as a child under 16, and never. Sometimes none of those choices is quite right, and sometimes some of the questions are frustrating, like "The phrase 'I've got you under my skin' makes me very uncomfortable." WTF? What if it only mildly confuses me? Why  would it make me very uncomfortable? Or "I feel very comfortable with dating or being in social situations." Really? Not every neurotypical person is going to feel VERY comfortable--it depends on all sorts of things as to what one's comfort level will be and much of that has nothing to do with being on the spectrum.

According to the journal article, which examined the international validity,

"A RAADS-R score of 65 or greater is consistent with a clinical diagnosis of ASD. A RAADS-R score of 64 or lower is not consistent with a diagnosis of ASD (sensitivity = 97%, specificity = 100%). It must be emphasized, however, that if a subject has a score of 64 or lower but clinical judgment indicates that ASD is present, the clinical judgment should take precedence. This is due to the many limitations of self-rating scales that will be elaborated upon in the discussion section."
So, 65 or higher? Hmm. Before I read the study, I took the test. I answered the questions honestly as best as I could, having no idea what the cutoff scores were for autism. My score? 107.

The scale has several subscales: language, social relatedness, sensory/motor, and circumscribed interests, and I was over the threshold on all of them, although just barely on the language subscale and social relatedness. Those were surprising, although I was not surprised that I was high on sensory/motor and circumscribed interests.

What do I do with this new information, that I score above the threshold? Nothing. Do I think I'm suddenly on the autism spectrum or that I've always been and now know just because it scored more than high enough? No. 

I've long embraced my BAPpiness, and this test result doesn't change anything; it doesn't make me view myself differently. I've watched my children grow, seen how their traits and mine, Rick's and other family members are all so similar. I know my kids get it from us, that genes and environment have mingled in such a way that they qualify for and need the diagnosis to get the assistance they need, that these traits rise to varying levels of impairment in the three of them. It also leads to tremendous strengths, too, though. 

So even though this test, and others like the EQ/SQ/AQ suggest that I'm highly BAPpy (and sometimes tipping over the BAPpy line), I also know that I don't need the label and if the DSM criteria itself is rigidly adhered to, I don't qualify. Being BAPpy is a good enough explanation for how I see the world differently from others--seeing myself in my kids, there's a sweetness there that's also a little bittersweet. They've got some of my traits that I'm glad to see them share and others that I know cause them difficulty, and I'm sorry they have to go through some of the same things I did and still do, but because I have and do, I can help them along, give them tips and be there to understand when it's all too much.

I think we can get hung up on labels in our search for why we are the way we are, in our attempt to find our own kind. I don't need a label to do that; I don't think that label is appropriate when disability is not a fundamental part of it. But that's my own opinion, and I respect that other people have other opinions on whether autism ought to be a personality type or a disorder. 

I don't know where autism will ultimately land, if people will win the day and move it to a full, inclusive spectrum that incorporates us BAPpy people on the light end and those with severe autism that leaves them significantly disabled on the other end--if we'll find a way to discuss this in such a way that the spectrum is recognized. Heck, maybe BAPpy will catch on, and all those people who are not impaired by their cluster of traits can come over to the BAPpy side and leave autism to those who are seriously and significantly disabled by the differences in their neurology. I know for me, though, that I cannot and will not co-opt a label that is still recognized by the medical, psychological, and educational fields as a disability; it would be a disservice to my children who are hampered or disabled by their autism to say that I, too, am autistic. 

Me and my girls.


kathleen said...

Well said...I did this test a number of years ago with similar results. I was surprised and not surprised..Like you I see both my husband and myself in our kids...like you I have a bittersweet feeling about it. My kids definitely need/have needed services..as a child I know that I could have used some help. There is a big difference between me my husband and our kids in that respect. How people relate/see themselves IS a personal choice..Like you, I'll stick with BAPpy..:)

sharon Morris said...

Amen to this. My husband and I are BAppy for sure, as the tests showed. Do we have some quirks? yes. Do these sometimes cause discomfort or confusion? Yes. Are we disabled by them? No.

My son on the other hand is clearly disabled by his ASD. Despite his verbal, social, aspie nature.

Lyn said...

I don't know. I got diagnosed as on the "higher" spectrum of autism. I don't FEEL disabled, but there are ways in which having sensory issues is a pain and makes me crazy. But, there's GOOD things about the way my brain works. Such as getting music drunk.

farmwifetwo said...

For those of us who do not need an label to be a person, it doesn't matter. I was told when my eldest son was 6 that it wasn't the kid that had Asperger's but his Mother by the dev Ped. So, I'm not disabled, and having dealt with the online aspies now for years I have no plans to join their "club".

Also, the OT supervisor told me one very important piece of advice long ago.

"A diagnosis is only to get services".


Trish said...

I find these tests impossible. I can very rarely answer yes or no to any question without having much more background detail or giving many disclaimers - it would take me hours to go through something like this!!

I actually did not "pass" the ADOS (or "fail," depending on your view, or I guess "meet the criteria for a diagnosis" would be better), but I was told that I more than met the criteria clinically and that they were amazed how well I had done in my life given what they had seen during the evaluation process.

I am so thankful I got the diagnosis if for no other reason than it helped convince my employer to move my desk back to an area where I can function better. I was slowly but surely falling apart where they had put me last year.

Of course, there are many other reasons why it was helpful, but being able to maintain my job was crucial since my marriage did fall apart and I need the income more than ever.

Not sure why I'm rambling here; sorry if this is too off-topic from your actual post. :)

Kim Wombles said...

Answering backwards,

Trish, I don't thing it's off topic at all. As fw2 said, the label makes sense if it gets a person services he or she needs--you needed accommodations to function effectively.

Sometimes, when we can make those accommodations for ourselves without going through formal channels, we can bypass that--I went into a career field where I am able to control aspects of my environment and days and times--I can make sure I don't have fluorescent lights on over my head or in my office, that there's a fan in my office to provide white noise, etc.

fw2, yes, labels when we need services--I have labels where I need them--I have an anxiety disorder with OCD tendencies, and accepting a DSM label lets me access health care and therapy to make the disruptions as minimal as possible. I don't see it as any different than the diagnostic labels I have for other health conditions like my diabetes or my GERD or migraines, and so on--those diagnoses allow me to get access to treatments.

Lyn, in many ways, my sensory issues are way worse than my kids' sensory issues and cause me significant issues. If the label is helpful to you, I am glad, but I'm happy to remain in the BAPpy column.

Me, (hah, looks like I'm talking to myself) and Kathleen, yup. I'd bet there are very few families where there is autism in a child and there is no BAPpyness.