No autism diagnosis? School psychologists can help

Suppose your teen has traits that suggest he or she might have Asperger’s or autism spectrum disorder (ASD). Most likely, this high schooler is having trouble socially, and despite being intelligent may be doing poorly in classes. Unless changes are made at school, there’s a risk of not graduating.

Also suppose that it’s difficult for you to obtain an official autism diagnosis – perhaps you live a great distance from a qualified psychiatrist, licensed psychologist or licensed social worker, or maybe these professionals have a waiting list. What can you do?

You may find help from your school district’s psychological services office. Our family learned that school psychologists have some autism-related assessments in their bag of tricks. The results of these assessments can lay the foundation for a school plan (IEP) better tailored to your teen, in which the Educational Disability is termed as “autistic-like”.  As a bonus, you may be able to use the assessment results to obtain autism-related services in the community.

We found out about all this in the last semester of Nathan’s senior year. Our consultation with TASK in January had prompted us to call for an IEP meeting in February to explore more transition services. It was at the IEP meeting that we met Dr L, the school psychologist. (I don’t know why there hadn’t been a school psychologist at the first IEP meeting we’d had at this school the previous spring.)

In contrast to the psychologist at Nathan’s first high school, Dr L was very proactive and competent (if you read “The Case of the Disappearing 504 Plan“, you will understand our relief!) It turns out Dr L previously had been called in to talk with our son during a time of troubling behavior. Based on his observations and Nathan’s records, he was now suggesting to us that Nathan might be on the autism spectrum.

Over the years, a few people had suspected Nathan has Asperger’s, but then again, several mental health professionals who’d evaluated Nathan had NOT mentioned Asperger’s. In Dr L’s view it was clear Nathan was severely impacted by one or more mental conditions, but if it were decided that Asperger’s/autism was a primary factor, he possibly could qualify for Regional Center and other autism-related services.

When I called the Regional Center to get an idea of whether Nathan could ever meet the criteria for their services, the weary gatekeeper suggested I take Nathan to the Diagnostic Center in Los Angeles, where he would get a thorough diagnosis. Going there wasn’t my favorite idea, since it would involve commuting to LA with car-trip-averse Nathan for several days.

I ran this by Dr L, who instead suggested that my husband and I, along with Nathan’s teacher and the teacher’s aide, complete a few assessments. If the results pointed to autistic-like characteristics, he could then set up an evaluation known as ADOS, or Autism Diagnosis Observation Schedule. He informed us that ADOS criteria are not exactly the same as official DSM IV-TR autism criteria (now it would be DSM-5), but said that Regional Center diagnosticians would usually accept ADOS results in making their diagnoses.

This sounded like a reasonable plan that would be provided free of charge by the school district, and it did not involve sitting on the freeway for hours. We went for it.

Below is a list of the assessments the four of us “raters” completed. (This took place in 2009, so updated versions of these assessments may now exist.)

  • Behavioral Assessment System for Children, 2nd edition (BASC 2). The assessment contains a long list of behaviors, and the raters indicate how frequently each has been observed in the student (from “never” to “almost always”). Some items in the list relate to adaptive behavior, including social skills, communication, and daily living activities. Others relate to social emotional behavior, such as aggression, depression, withdrawal, hyperactivity, and more. (None of these categories directly specify autism, but it so happens that they include behaviors often associated with autism.) The scores given indicate whether the particular behavior might be “clinically significant”, “at-risk”, “average”, or better than average.  Of course, it is noteworthy if several raters give scores that indicate a clinically significant or at-risk problem. In Nathan’s case, that happened in 11 out of the 16 categories overall.
  • Conners Comprehensive Behavioral Rating Scales (CBRS).  The responses on this survey point to “Diagnoses to be considered by a qualified DSM-IV-TR Diagnostician”. (This would now be a DSM-5 diagnostician). Among the 12 diagnoses included for consideration were Autistic Disorder and Asperger’s Disorder (but Asperger’s is now not in the DSM-5; is it still in the CBRS, I wonder?). Nathan had three diagnoses that all four raters flagged for consideration, including Asperger’s Disorder.
  • Gilliam Asperger’s Disorder Scale (GADS). The questions in this survey are grouped into four subscales (social interaction, restricted patterns of behavior, cognitive patterns, and pragmatic skills) and an Asperger’s Disorder Quotient. The results indicate whether the probability of Asperger’s is high, borderline, or low. Most of the raters found Nathan’s probability of Asperger’s high in the first three subscales, but results were scattered in the fourth subscale and for the Asperger’s Disorder Quotient.
  • Gilliam Autism Rating Scale, 2nd Edition (GARS 2). This survey had three subscales (stereotyped behaviors, communication, and social interaction) and an Autism Index. The results indicate whether the probability of autism is very likely, possible, or unlikely. Results for Nathan were mixed in the very likely or possible ranges, except in the social interaction subscale, where the responses of all four raters indicated Nathan had behavior consistent with an individual who had been diagnosed with autism.

The results of these evaluations gave enough support to the possibility of an Asperger’s or autism diagnosis, so the ADOS evaluation was scheduled.

This involved gathering a total of five school psychologists for about an hour and a half at a different school in the district with a room to spare. Two psychologists administered activities to Nathan, and three observed the interactions and provided input to the assessment.

The nature of the ADOS questions/activities are a bit of a challenge for the layperson to find out, but here is a discussion of them on the Wrong Planet website. From what I can gather, there are hypothetical questions along the lines of how the subject would react to a person who said ________ or who was doing _________.

The categories for analysis in ADOS are: communication, reciprocal social interaction, and communication + social interaction. The number value of the individual’s scores in these three categories are compared to cut-off threshold points for either autism or autism spectrum. Nathan’s scores were two to three times higher than the cut-off for autism in all 3 categories.

Here’s what the Autism Speaks website has to say about ADOS:

The Autism Diagnostic Observation Schedule (ADOS) is the instrument considered to be the current gold standard for diagnosing ASD [autism spectrum disorder] and, along with information from parents, should be incorporated into a child’s evaluation. Although a diagnosis of ASD is not necessary to get intervention, in some states the differences in the services provided to children with and without a diagnosis of ASD can be huge. Once a child has had a diagnostic evaluation and is determined eligible for services, additional assessments may be completed to better understand the child’s strengths and needs in order to plan intervention goals and strategies.

In our situation, it took time for all of these evaluations to be scheduled and assessed. We were given the results in a Multidisciplinary Assessment Report at our final IEP meeting in early May, a month before graduation.

The IEP system only allows one primary Educational Disability to be designated for a student, but now we had two conditions to choose from: Emotional Disturbance (the one he’d been given two years prior) or Autistic-Like Behaviors.

If we had known about and done all of these assessments earlier in Nathan’s school career, we might have decided to use Autistic-Like Behaviors as his primary Educational Disability. I don’t know if that would have yielded a smoother, more productive high school experience – but I regret not having that option. Hopefully this blog post will prompt some of you in a similar position to inquire and act on these assessment possibilities as soon as you can.

While the results we obtained came too late to affect Nathan’s school career, I was hopeful they would open the door for autism-related services in the community. Did they? Stay tuned!

NOTE to any school psychologists reading this: please add comments, to update the information or correct any errors in what you see above – or to validate what is presented. Many thanks!

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About janet565

I've lived in the Inland Empire of Southern California since 1982. Born and raised in New Jersey, I've also lived in upstate New York and in Oregon. My profession involves maps and geography, which is usually very interesting. My hobbies are pretty boring - none of them involve tigers (or ligers) or jumping out of aircraft - so they do not bear mention here. I hope you find the blog useful, and wish you well....

7 responses to “No autism diagnosis? School psychologists can help”

  1. Karen Gilman says :

    Very interesting and useful post. Hope it helps other parents, too. One minor piece of feedback: social workers can’t diagnose, We can refer to mental health professionals who can diagnose (psychologists, psychiatrists and other m.d.’s) and we may have familiarity with some of these assessment tools, but we can’t diagnose. I hope that for parents who find that there is a likelihood of ASD with their son andndaighter will not only be able to more finely to be that student’s IEP and Regional Center services but also have an easier time qualifying for SSI benefits. From Karen Gilman, LCSW, Los Angeles, California

    Like

    • janet565 says :

      Thank you for your comments, Karen, and especially for the info about social workers not being able to officially make a diagnosis. I copied that list of professionals-who-can-diagnose from an email I received on the topic at the time, so it turns out that was a piece of misinformation. We should add that pediatric neurologists are one type of medical doctor who can make the diagnosis.

      Like

  2. Catherine says :

    This is a great post, Karen. As a school psychologist working in L.A. county, I would like to underscore that each district handles the process in a different manner. In my district, typically a speech and language pathologist and school psychologist administer the ADOS together. Although school psychologists cannot diagnose autism, in many ways the school setting provides the ideal environment for assessing the social features which characterize individuals with this diagnosis and as such, we can provide very useful information for outside service providers who can make the diagnosis. In regards to your comments about not receiving the label earlier in his school career, I would like to reassure you that it is quite likely there would have been no substantial changes to his high school experience. School personnel working with students on IEPs are trained to work with the presenting behaviors, regardless of eligibility category.

    Like

  3. Kathie Allen says :

    Thank you so much. We are applying to one of the regional centers for my son and your article was very helpful!!

    Like

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