When You Can’t Score an Autism Diagnosis

This is part of a series I’m writing on being the parent of a child with severe multiple disabilities at Blinded Trials.

A couple of months ago, a mother of a child with the same rare genetic syndrome as my middle son made an interesting post on Facebook. (Many of the syndrome parents are Facebook friends). She was asking for prayers. Not at all uncommon for the syndrome parent crowd, usually because a child is getting surgery or has fallen ill. This was a little different. She was asking for prayers that her visit to the doctor yield a diagnosis of autism. Later that day, she gave us all a status update: God was listening. Autism diagnosis.

To those who do not have a child with special needs, this behavior might seem exceptionally odd. Setting aside the debatable theological issues, why would a mother want her child to have autism?

It is a truth universally acknowledged among parents of a kid with special needs: a diagnosis of autism gets you far more in the way of services (by which I mean speech therapy, occupational therapy, physical therapy, and behavioral therapy) than any other diagnosis, including plain old I/DD (that is, intellectual and developmental delays). These services are provided in greater quantity to people with autism diagnoses by both school systems and insurance companies.

The services available to educate children with special needs may be altering soon. As Russell has written, there are proposed changes to the definition of autism in the forthcoming DSM-V. They are meant to be stricter and more refined. As Allen Frances, chairman of the DSM-IV Task Force says:

The possible DSM 5 return to a narrower definition has created an uproar and caused a sharp division of opinion among advocates. Some of the disagreement concerns how the DSM 5 proposal may affect stigma and self concept — e.g. a wider definition can be seen as either stigmatizing or normalizing depending on your point of view. But the major opposition arises from the fact that extra school, mental health, and other special services often require that the child have a diagnosis of autism. Autism has quadrupled in schools at least in part because it has become an eligibility prerequisite for expensive and individualized programs that would otherwise not be available. And the majority of states also require insurance companies to provide special mental health services for those having the diagnosis.

Most of the controversy has centered around the possible exclusion those who have Asperger’s or have a diagnosis of PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified). People with PDD-NOS meet some, but not all, of the criteria for autism. Some studies seem to indicate that many of these higher-functioning people might be excluded (abstract only, article behind paywall). Another study seems to indicate only 9% would be excluded (again, abstract only).

But allow me to put in a word for those who have not been mentioned in these debates. These are people who are specifically designed to be excluded from the criteria. These are people with plain old garden variety people with intellectual and developmental delay, or I/DD.

Two kids at roughly the same grade-level of functioning, one with a diagnosis of I/DD and the other with a diagnosis of autism, will be entitled to vastly different treatment options from school systems, insurance companies, and Medicaid. There are kids with severe I/DD who could meet the autism criteria under DSM-IV, but will not meet them under DSM-V. My kid is perhaps one of them.

A bit about my middle kid. He is three years old. He can understand about 200-300 words, but understands more sophisticated sentences in context and with certain tone and facial expression. He can sign/gesture about 10 words and can makes his desires known in many other ways (pointing, facial expression, etc.). He cannot yet walk, and crawls or uses a gait-trainer to get around. He perseverates on certain tasks or objects, and has repetitive movements (head tapping, rocking, sometimes light head-banging, etc.). He has many bizarre sensory issues.

He loves people, makes eye contact all the time, responds to his name, follows conversations, plays simple games, always laughs when everyone else laughs, has sophisticated facial expressions, always tries to play with everyone, smiles broadly at strangers, can point to himself or anyone else he knows named in a photograph. His older brother once said, “James can’t do anything. Well. Except make friends.”

Here are the DSM-IV criteria:

A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):

(1) qualitative impairment in social interaction, as manifested by at least two of the following:

(a) marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(b) failure to develop peer relationships appropriate to developmental level

(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)

(d) lack of social or emotional reciprocity

(2) qualitative impairments in communication, as manifested by at least one of the following:

(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)

(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

(c) stereotyped and repetitive use of language or idiosyncratic language

(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

(3) restricted, repetitive, and stereotyped patterns of behavior, interests, and activities as manifested by at least one of the following:

(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(b) apparently inflexible adherence to specific, nonfunctional routines or rituals

(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting or complex whole-body movements)

(d) persistent precoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

C. The disturbance is not better accounted for by Rett’s disorder or childhood disintegrative disorder.

So. He meets criteria (1a) and  (1b). His body postures and gestures are strange due to motor issues which inhibits his interactions. His developmental peers are probably 12-15 months, and he can’t walk or play some games they could and would have trouble keeping up. He has seriously delayed language (2a), has repetitive and stereotyped behaviors (3a, 3c, and 3d), and can’t use language for social functioning (B2). (For the record, I have not sought and have no plans to seek an autism diagnosis for James.)

Here is DSM-V language:

For a person to be diagnosed, they must meet criteria A, B , C, and D.

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated-verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understandingand use of nonverbal communication, to total lack of facial expression or gestures.

3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people

B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:

1.     Stereotypedor repetitive speech, motor movements, or use of objects (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases);

2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes);

3.     Highly restricted, fixated interests that are abnormal in intensity or focus (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests);

4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects);

C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D.         Symptoms together limit and impair everyday functioning.

Emphasis mine. So because his difficulties are attributable to a developmental delay, he no longer meets the criteria set out in A.

Parents of kids with his syndrome often break their backs to get their kid an autism diagnosis. Including calls to prayer.

I’m not at all opposed to changing the criteria, at least on my kid’s behalf. Whatever constitutes autism, I don’t think James has it, although there are some commonalities.

What I am opposed to is the serious disparity in services offered to kids with autism diagnoses and I/DD diagnoses. Why the difference? Here is what I am told when I ask school system folk and my insurance company. Autism is better studied. There’s a lot more funding available for research. So there is evidence that a specific amount is efficacious. There is tons of evidence that speech, occupational, and physical therapy work wonders for kids with I/DD. But no one knows exactly how frequent. The majority of studies done on I/DD are with Down syndrome, and there are still far fewer studies than with autism. Applied Behavior Analysis, which helps manage problem behaviors, anecdotally also helps kids with I/DD and severe behavioral problems. Many kids with my son’s syndrome have severe behavior problems: aggression, self-injury, etc. Those who use it see ABA as a lifesaver. Yet most insurance companies will only cover it for autism. So the parents seek an autism diagnosis. And as for speech, occupational, and behavioral therapies? Well, there are more state-mandated requirements for autism. So they will give as little as they can.

One of the teachers in Edmund’s school recently was nearly in tears about this very issue. “Everyone’s forgotten about these kids. No one cares about them. They simply don’t get what they need, especially when they are in a poor family who doesn’t speak English.”

Frances suggests:

So how can we accomplish both important goals — i.e. achieve a more precise diagnosis of autism AND not deprive services for those who need them? I think the best solution is to decouple school services from the DSM diagnosis of autism. Instead of DSM diagnosis, the child’s specific learning and behavioral problems should guide eligibility and individualized planning.

Children who now get inappropriately labeled autistic should lose the inaccurate diagnosis, but not lose the needed services.

Well, that sounds lovely of course. But how are we going to ask schools and insurance companies to suddenly start parting with money on an entirely different basis? What if the evidence isn’t in yet?

Recently, some of the more activist types among my syndrome parent friends decided we would get together and make this an issue. Agitate for parity. But how? Where to start? Each school system, each insurance company, each state? I really don’t know. And in the meantime, there are kids who are not getting therapies, and there are studies not getting done.