Asperger's Alive

The changing landscape of autism and neurodiversity

Is Asperger’s Overdiagnosed Because Parents Want Free Stuff?

And this is the way to get it? That's what some DSM-5 professionals claim.

A family holding up an Asperger's sign being showered with gifts
Some professionals claim the Asperger's diagnosis was a route to unwarranted services and supports. This is not reality.
Created by Lucy Berrington
In any harsh political climate there’s much snarking about free stuff and those who are supposedly getting it. Takers versus makers. The 47%. There’s a free stuff theme in autism politics, too, and it goes like this: Why is Asperger’s overdiagnosed? Because parents want free stuff and an Asperger’s diagnosis is how they get it.

"False positives" for the Asperger diagnosis?
The professionals who claim Asperger’s is overdiagnosed haven’t shown it to be so. Nevertheless, eliminating “false positives” was among the stated goals of some of the professionals involved in revising the autism terminology and criteria for DSM-5. The assumption is that these “false positives”  are Asperger’s diagnoses in people who are not strictly autistic. (Since we’re relying on anecdotal evidence, we should offset the Asperger’s diagnoses given to those who have the early language delays of classic autism but are diagnosed with Asperger’s because it seems more hopeful. But that phenomenon is never part of the argument.)

Do parents exploit the the Asperger diagnosis?
Clinicians have accused families and individuals of exploiting the Asperger’s diagnosis for “enhanced” educational support and as “a lunch ticket.” It becomes “a cost issue,” a route to “$50,000 a year worth of educational services” for kids who would allegedly do fine in the mainstream. That last comment came from Allen Frances M.D., psychiatrist, author, and chair of the DSM-IV Task Force that introduced Asperger Disorder as an official diagnosis (he is also a Psychology Today blogger). The most prominent critic of DSM-5, Dr. Frances also claims that the Asperger Disorder diagnosis of DSM-IV, his own work, has been widely over-applied.

It’s a sweet image: the child diagnosed with Asperger syndrome and the taxpayer-funded freebies raining down on the family: customized education, therapies, classroom aides, special programs. Like most stereotypes of the “entitlement culture,” it’s untrue.

Not all Asperger kids need special ed
An Asperger’s diagnosis (like an ADHD, dyslexia, mental health, or other diagnosis) can help establish a need for special education services — but it does not in itself establish that need. Some students with an Asperger diagnosis can handle the mainstream, and as the “least restrictive” learning environment that’s the goal, when appropriate.

But many do
Students who receive special services, which can include moving out of the mainstream into special educational placements, are students who were previously not coping, who were flailing academically, socially, or emotionally — often, all three. Maybe they were experiencing sensory overload and shut-down, being bullied, or suffering anxiety and depression, sometimes to the point of breakdown and hospitalization.

And some still don't get them
Let's bear in mind, too, that plenty of students who are floundering in those ways still don’t get appropriate services, because those options aren’t presented and the parents don’t have the knowledge or resources to fight for them. Those students are more likely to drop out than move into appropriate special ed. If they’re lucky, they’ll be homeschooled (what does this save the taxpayer? Let’s factor that in).

The Asperger diagnosis is just the beginning
When the Asperger or autism diagnosis does help determine need and appropriate services, it’s only the beginning of an arduous, time-consuming process that continues through grade school and beyond. The growth of special education doesn’t reflect fake learning needs any more than food stamps reflect fake hunger. Instead, the growth of special ed reflects our increasing ability to understand and address the struggles of students who learn atypically.

Does an Asperger’s diagnosis represent an easy option for families? Let’s look at the investment that families make in this process.

Families go to meetings, and meetings, and more meetings
First there are the team meetings, in my family’s case two to four a year. Ostensibly, these are convened for drafting and revising the Individualized Education Plan.

Then there are the additional school meetings, those summonses when your child’s been picked on, your child has picked on someone else, your child broke a rule, a rule broke your child. Maybe you have to join a field trip because the aide went AWOL. Perhaps you’ve discovered your child’s twice weekly occupational therapy sessions haven’t happened for three months and you need to introduce the school administrators to the concept of compensatory services. During my son’s fourth grade, his principal routinely asked me pick him up early (at least twice, before 10 AM, which rather suggests they weren't trying). If I’d been employed then, my job wouldn’t have lasted long. (Eventually I figured out it was the school district’s legal obligation to educate him through the school day, and I passed on that surprising tidbit to his principal.) How many of these meetings a year? How long is a piece of string?

Families get educated on special education
Next, add in the hours, weeks, and years of self-education: consultations, workshops, conferences and reading. Much of this is about special education law and how to comply with it, because if we miss a deadline or forget to put something in writing, that “free stuff” will be no stuff.

Families provide private services
Then there are all the interventions school doesn’t cover, the out-of-school-hours appointments, both those kept and those (inevitably) broken (stressed children are not the most compliant): educational consultants, therapists and counselors of various stripes, psychiatrists if meds are involved, after-school arrangements, and, every so often, neuropsychologists. Again, the time and money invested is highly variable. Through my son’s elementary and middle school years we probably averaged three appointments a week and at least $5,000 a year.

School services aren't "extra" — they're instead of
By the way, those “enhanced” school services are not over and above the regular school experience. They are instead of it. The student who gets academic support, for example, isn’t getting something else — maybe a foreign language. The student who participates in social pragmatics or occupational therapy sessions isn’t getting chorus or band. The student in a special class or the short bus isn’t getting the mainstream peer experience.

I can think of only one intervention that doesn’t replace a piece of the typical educational experience, and that’s summer services for students who would regress without them. Even in my own town, which does an above-average job with special needs, these summer services are difficult to access. On the one occasion that my family made use of them, we waited more than a year to be reimbursed. Incidentally, the aides assigned to special needs students (free stuff!) also serve as back-up teachers, benefitting the mainstream children too. Add that to the equation.

For each child, special services are experimental
So far we haven’t touched on the quality and effectiveness of this free stuff. In middle school, my son and his peers rebelled against the infantalization of their social pragmatics sessions, which seemed not to have evolved since third grade. Enhanced services? Enhanced relative to what? Are they helping the child thrive? Sometimes it’s hard to tell. There’s no Your Child Control battling it out in the mainstream for comparison. We can’t look into parallel universes and observe how he or she handles different educational models.

I’m sure my own child has benefited overall from the talent and dedication that many of his special ed administrators, teachers and other providers brought to their work, and I’m grateful that we have access to them. But my town is unusually well-resourced and committed to this, and I’ve been able to draw on expertise from other sources — sometimes, as I’ve said, at considerable personal expense.

Families lose income for years
Yet my family’s experience still wasn't smooth or low-maintenance. This is not what we’d call a lifestyle choice. Meeting my son’s needs entailed, for me, an extended break from the workforce. It’s a conservative estaimate that this cost me well over $50,000 a year in lost earnings alone, permanently limiting my career and my quality of life in retirement. I’ve made a further $50,000 investment in graduate school to facilitate my return to a workforce that evolved in my absence. Do I begrudge my son? No. Lucky us, that we had those options. Do I begrudge professionals who claim my advocating for special educational services for my child makes me part of an entitlement culture? Sure.

Factor everything in, and here’s the list of reasons why parents would seek an Asperger’s diagnosis and the educational services it might facilitate:

  1. The child needs it.
  2. And, um, that’s it.

Lucy Berrington is a Massachusetts writer and the parent of a teen with Asperger syndrome. She serves on the Board of Directors of the Asperger's Association of New England.

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