When You Can’t Score an Autism Diagnosis

This is the third in a week-long series on being the parent of a child with severe multiple disabilities. This is cross-posted at the main page.

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 knows to be true: 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.

Rose Woodhouse

Elizabeth Picciuto was born and reared on Long Island, and, as was the custom for the time and place, got a PhD in philosophy. She freelances, mainly about disability, but once in a while about yeti. Mother to three children, one of whom is disabled, two of whom have brown eyes, three of whom are reasonable cute, you do not want to get her started talking about gardening.


  1. “stigmatizing”

    While I accept the fact that some people use “stigmatizing” (prejudicing) tactics, I do not accept that the result of their work is a stigma.

    The result of their tactic is some people will be prejudiced, and they will hide their prejudice by directing that term at someone. It is a clever device: “I am not prejudiced, there is something wrong with you.” This particular prejudice is most successful when the person wronged, accepts the prejudice and self-directs it.

    Harold A. Maio, retired Mental Health Editor

    • It should be noted that “stigmatizing” was used in a quote – I didn’t say that.

        • I chose the quote as a description of the nature of disagreement. As far as I know, Frances is not taking a position in it, at least in this article. I chose the quote to say the were two disagreements, one more serious than the other, and I wrote entirely about the other, more serious one.

          • When we place the term stigmatizing in an article, we place it in minds. I personally do not place t in minds. History has taught me not to do so.

          • So your preference would have been for Rose to redact that specific, isolated term in order to avoid the potential that it get “place[d] in minds”? Even though it is tangential to the point of her post, and that doing so would make the quote harder to understand?

            What an odd thing to want, and what a strange way of advocating for your point of view.

          • —So your preference would have been for Rose to redact that specific, isolated term…

            Yes, as I would expect any professional not to empower that term, thereby placing it in minds. Is it your wish to place it there? To act as an agent therof? It is not my wish.

            I have no objecton to placing the term “discrimination” in minds:
            Stigma= I say there is something wrong wiht you.
            Discrimination = There is something wrong with the “I”.

            Which do you wish to convey?

          • Honestly, I think you’ve done far more to draw attention to the word and the idea by commenting on it like this than I did by including a quotation that mentioned in passing that some people are concerned about the issue of stigmatization. ANd more honestly, I don’t think either of us have changed anyone’s attitude’s toward autism or autism researchers in the course of this discussion.

          • So your approach to the phenomenon that people with mental illness are unfairly stigmatized is to pussyfoot around the term for what is occurring? To treat the verb as some kind of epithet? And you think this is an effective rhetorical strategy?

            Rose quoted someone making reference to but not endorsing the stigmatization of people with a certain diagnosis, and your quibble is that the term was included. I cannot imagine that will you convince a single person of the rightness of your views, taking this approach.

        • So your approach to the phenomenon that people with mental illness are unfairly stigmatized is to pussyfoot around the term for what is occurring? To treat the verb as some kind of epithet? And you think this is an effective rhetorical strategy?

          It is the identical strategy women used, they said stop, we stopped. Are you saying that was not a good strategy?

          Honestly, I think you’ve done far more to draw attention to the word …

          That is precisely what women did. And they told us to stop. We did. I am asking only what they did.


          • First, fair warning that this conversation has passed the event horizon of pointlessness, and thus I’m calling it quits after this. I am at peace if you choose to respond further; you can have the last word.

            You seem singularly confused and confusing, and the link to your similarly incoherent letter does not illuminate much beyond that. I assume you are referring to women objecting to being called certain slurs. The words “stigma” and “stigmatizing” are not slurs, but are value-neutral descriptors of a thing that occurs. That this distinction must be made clear to you, and that you persist in your inability to understand this distinction even still, makes you a poor advocate for your pause, and renders null whatever valid point you might otherwise have made.

          • After this, I am done is well.

            That some people with mental health issues believe that they are stigmatized is one issue. Whether they are correct in believing this is yet another. In my article, I quoted someone who made reference to the first fact. You seem to think that even mentioning the first fact somehow validates the second fact.

            Some people believe that vaccines cause autism. That does not make it so, and my mentioning that some people believe it does not make it so.

            You used the word “stigma” in your letter to the Lancet.

            Speaking of evidence: I would like to see evidence that mere quotation of the word “stigmatization” in reference to what people believe (without judgment as to the correctness of that belief) in the course of an article on something else entirely has a causal effect on stigmatization beliefs.

      • –So your approach to the phenomenon that people with mental illness are unfairly stigmatized is to pussyfoot around the term for what is occurring?

        You extend someone’s prejudice to a universal, it is not. Nor would anyone dare direct that prejudice toward me, it is a rudeness I do not abide.

        SAMHSA has ended its use of that term. NIH has, the Lancet has. All are responding to empowering it by using it. The State of Florida has stopped. “Casually” emplying a prejudice means emplying it. You are, of course, welcome to continue. It is my hope you will stop.

        —-The words “stigma” and “stigmatizing” are not slurs, but are value-neutral descriptors of a thing that occurs.

        Direct it at women. I do not believe they will agree wiith you. Direct it at Jews, I do not belive they well agree with you. Direct it at me, as you insist you have the right, and I wll assuredly address it as a slur specifically directed at me. Would you do less were it directed at you?

        I ask you to stop, as you put it, “No.”

        • 1) The person I quoted did not even say that people with autism were stigmatized, but that some might see themselves as stigmatized. This is an epistemological point, not a metaphysical point. Emphasis mine: “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.” In your Lancet letter, you say, “I do not agree with your assertion, which implies a universal prejudice. Some people may hold to this particular prejudice, as some will hold to almost any prejudice, but I cannot fathom why you would wish to affirm this odious practice.” Your objection seems to be that “stigmatization” carries with it the implication that it is universal. Frances, again, is not referring to the actual practice of stigmatization but the perception of it. But in any event, he specifies that he is using the word non-universally.

          2) I am a woman and a Jew. I have to say, the phrases “Jews are stigmatized,” or “women are stigmatized” don’t really get my blood boiling. I don’t agree with them in all or most contexts, but I’m not offended by them.

          • If I may, Rose, I think what Mr. Maio is arguing is that the word itself is offensive; the usageand definition is not relevant. The impression I am getting from him is that “stigmatize” is his version of the R word.

            Which is not to say that I think you should stop using the word; I don’t. I just think he’s picked a very, very lonely and uphill battle to fight in the culture wars, and I suspect any argument by yourself, Russell or myself will have all the impact that someone saying we should get off our high horse about people using the R word would have on us.

    • I’m going to hope to avoid getting into the whole “stigma” business altogether, and instead just say this:

      I find it head-scrathing that a retired editor of anything is arguing that when a writer is quoting someone, regardless of context, they are advocating not just the ideas but the specific word usage quoted.

      Whatever publication you used to edit, did writers just never quote people?

      • And, as a side-box to that comment, why is the act of Rose quoting someone assumed to be an endorsement of that quote, but you then re-quoting that exact source multiple times not?

  2. I sympathize with your concerns, and appreciate your noting that applied behavior analysis (ABA) interventions are helpful for people with intellectual and developmental disabilities other than autism. Note, however, that the support for the latter is not just “anecdotal.” Hundreds of studies demonstrating the effectiveness of ABA interventions for people with various diagnoses have been published over the past 50+ years in peer-reviewed scientific journals such as the Journal of Applied Behavior Analysis, American Journal on Intellectual Disabilities, Behavior Modification, Behavioral Interventions, Research in Developmental Disabilities, and more.

    • Every time I ask a professional about the efficacy of frequency of therapy, they reply that there is not enough research. There is research on efficacy but not frequency. I’ll obviously have to look into it.

  3. Tod: Choose quotes carefully. If you do not endorse the content, choose another. If you choose it to directly address it critically, you do not endorse it.

    • Then seek to only write about things everyone agrees with already, and seek out only quotes from other people that say the exact same thing you are saying?

      You are a very unusual editor.

      • —Then seek to only write about things everyone agrees with already…


        ” …seek out only quotes from other people that say the exact same thing you are saying?”

        People do that, I do not recommend it. If you have a thesis, the way to test it is to seek out people who agree with it and people who do not.

        Theses: People ‘stigmatize’ mental illnesses intentionally. Inquiry: Which people?
        People ‘stigmatize’ mental illnesses casually. Inquiry: Which people?
        People ‘stigmatize’ mental illnesses out of habit. Inquiry: Which people?
        People ‘stigmatize’ mental illnesses. Inquiry: Do I want to join them?

        • You’re conflating two separate issues.

          “Is the word ‘stigmatize’ a word that does more harm than good” is a topic you can certainly make an impassioned argument, I suppose.

          But making that argument is very different from saying that a writer should ignore relevant source material because that source used a word you don’t prefer – which, I believe, is your issue with Rose. This is the argument I find bizarre.

          • Does using a term empower that term is what I am addressing. Does it matter, in using it, what the motivations of the writer are, is the term less empowered?

            It is an issue worthy of consideration.

            People experiencing the “r” word by the association representing them and asked them to stop, because people were repeating them. They stopped.

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