About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Saturday, April 12, 2008

Autism 101 and nomenclature.

What does it mean to identify as "autistic"? Autism exists as a discrete diagnosis and as a spectrum.

Esthart has copied and pasted the DSM-IV "autism" diagnosis here. The American Pediatrics Association indicates:

"Autistic disorder is the term used when a child meets all the necesary criteria listed in the DSM-IV. Children with autistic disorder have problems with language skills that are absent, delayed or abnormal; problems relating to others socially; and unusual or repetitive behaviors. While social symptoms are usually present in the first year of life, language problems show up in the second year and stereotypic behaviors show up later." [Emphasis added.]

Source: Understanding Autism Spectrum Disorders (ASDs)

The "autistic spectrum", which is almost universally adopted, is comprised by autism (as defined above), aspergers and "PDD-NOS". AAP describes PDD-NOS as follows:

Children with PDD-NOS or atypical autism show some signs of autism or other PDD, but don't meet the criteria to be diagnosed with one specific disorder.

Source: Understanding Autism Spectrum Disorders (ASDs)

I use the term "mild autism" to refer to PDD-NOS, and the term "classic autism" to refer to autism as defined above. I argue that the distinction between the two is one of degree or quantity, and not of quality. This is far from commonly accepted. Many object to the term "mild autism" because the connotation may be a lesser need for services, and many parents with children on the mild end of the spectrum embrace these services. However, I don't believe in diagnosing for services or adopting nomenclature to justify services. Rather, I believe in intellectually honesty above all.

I don't use the label "HFA" or high functioning autistic. While I endorse the notion that autism exists in gradations or degrees, I don't believe that we have to measure degree by reference to function. My son is generally pre-verbal and is still in diapers. He certainly doesn't qualify as "high functioning." Yet, he is distinguishable from other autistics in terms of degree. Hence, my preferred terms "a little bit autistic" and "mild autism." "High functioning autism" is an analytical void, from my son's perspective.

What then do I mean when I write, for example, "my son is autistic"? I don't mean that he has classic autism. Instead, I mean he's on the autistic spectrum.

Now, lets loop back to the central assertion that is causing the members of the late talker group so much consternation. Namely, that late talkers are per se mildly autistic. Again, I'm not
suggesting that any of the late talkers have classic autism.

As summarized above, children with PDD-NOS or mild autism present with symptoms from three general categories: language, social and behaviors. Late talkers, by definition, have a significant language delay. Socially, by definition, most late talkers present as aloof or, as Sowell euphemestically puts it "strong willed." Sowell further concedes that these children often have difficulty sustaining eye contact and responding to their name. These "traits", in the aggregate, are generally enough to implicate social impairment for PDD-NOS diagnostic purposes.

The remaining category, behaviors, is nebulous when it comes to late talkers and mild autism, especially in the preschool years. Toddlers - neurotypical and autistic alike - tend to cling to nonfunctional routines, and engage in repetitive behaviors such as lining up blocks. Dr. Greenspan describes this category as secondary, and includes within its scope the tendancy to: "persevate (for example, lining up objects repetitively), flap hands, or self stimulate (for example, staring at a fan, rubbing a particular spot on the floor, and so forth)." (Source: Engaging Autism. ) Hence, this category is related to sensory dysfunction. With respect to mild autism, if the sensory dysfunction is mild, then so too will the resulting symptoms, if any.

In sum, my sweeping generalization - that late talkers by definition are mildly autistic - isn't a leap in logic at all. And that is why Sowell argues that the spectrum itself doesn't exist, rather than arguing that late talkers don't meet the diagnostic criteria.

Now lets explore differential diagnosis. SarahGepp invited me to weigh in on this issue (here):

"[W]hat is the true difference between HFA and a speech delay that includes other subtle developmental issues such as sensory disorders?"

If it's just speech delay and mild sensory issues, I wouldn't say it's mild autism unless there were also a social impairment. She describes her son as follows:

My three year old is very friendly, intelligent, and engaged but there are some things he does that have me wondering. He scripts more frequently than most kids his age, for instance. He also loves fans and turning on and off light switches which I think goes beyond just a normal curiosity with cause and effect. He also has some sensory issues (both sensory seeking and sensory avoiding). Also, since the minute he could get around he has tried to escape. (In the autistic community this is referred to as elopement and often is tied into sensory issues.) He does not have some of what people might consider the more "common" behaviors you see with kids with ASDs. He does not flap or spin or line things up, for instance. He has good eye contact, seeks social contact (although he get overwhelmed in groups) and he does not have
atypical meltdowns. He is also is in a Montessori school with NT children and does well. That does not, however, clear him from being a child who would benefit from some of the therapies geared towards autistic children. Much of what I observe about him is just a "feeling" that something is not right. He has an incredible memory and
with probably turn out to be an early reader, but I think that these traits go beyond just being exceptionally intelligent. When I interact with him it is just obvious to me that he is not your NT kid." [Emphasis added.]

It's not my place to ascribe a diagnosis to any particular child. I would follow my instinct, if I were you. Just don't be afraid of doctors. That's my message. The issue of eye contact is interest to me. Brad makes good eye contact too. When he was evaluated, however, they said he didn't use it to regularly "check in", the way a neurotypical child does. It's subtle, but detectable. In terms of the sensory issues, I recommend that you read the book, The Out of Sync Child.


Anonymous said...

Well said. Thanks for responding to my comments. I am actually reading "The Out of Sync Child" right now! We just had teacher conferences at my son's school on Thursday and they went really well. At the first round of conferences back in the Fall they said they thought that he might have some "sensory issues". Now his main teacher is saying that his development has really taken off and that she no longer think that their are any concerns or delays. He has really taken off verbally the last few months and I think that has helped with a myriad of issues. (He has 3 hrs of speech therapy a week which has helped.) I still worry sometimes, however, and am totally open when it comes to a diagnosis and further treatments.
An interesting article that my brother, who is a nurse, just sent:

Estharth said...
This comment has been removed by the author.
Estharth said...

....Now, lets loop back to the central assertion that is causing the members of the late talker group so much consternation......

"consternation" was Laura's added word of emotions applied to others.
Consternation was not stated ..... disagreement was stated about Laura's incorrect use of diagnostic terms.

Consternation might have originally been a reaction to unethically taking private material and publishing it online. That has since been corrected, but this is only raised to clarify former discussion.

DSM IV criteria does not at all state " a little bit autistic" - so these statements are not applicable as diagnostic material, for that reason, it is really not all that useful.
Although it does demonstrate how diagnostics could easily be twisted and stretched if a one is not careful.
Under the same light as Laura's statement are some people are a little bit autistic if they like to sit quietly in a room for a short time ? ( or even long),or read in a library. It shows how a fake spectrum can be created.

It also demonstrates why therapy should carefully match each specific issue.

Judith said...

Excellent post. Out of Sync Child was one of the first books I read when Jack started receiving EI services.

As for eye contact, with family, Jack's has always been really good, although not completely normal. It's actually one of his strengths.

Laura said...

Sarah - that's awesome! You must be so proud. And relieved! btw, I couldn't get the link to work. Please keep us updated...stories like yours give me a lot of hope.

esthart - ah, the slippery slope argument. This is the second time you raised it. No, not joining in the tea party or spending alone time in the library are not enough to implicate PDD. The communication impairment has to be significant. According to What To Expect - Toddler Years, most children are putting two words together at 22-1/2 months, and almost all children are doing so at 24 months. And of the children who aren't putting two words together at 2 years, many have things like apraxia. The remainder is a very small set of children. So the idea that PDD casts an absurdly wide net is false; only a very small set even meet the communication impairment criteria, and of those, many don't meet the social impairment and behavior critiera.

Judith, I would imagine that the eye contact gives you a lot of hope. Those flashes of connection are said to be "teachable moments." So the more he's connecting with eye contact, the more he's learning, isn't he? On a bad day, Brad's eye contact gives me a lot of hope. On a good day, the extent to which his eye contact is consistent makes me skeptical of his diagnosis. Yes, I'm schitzo on a regular basis. :-)