What’s In a Classification (vs. a Diagnosis)
The first thing to keep in mind is that “classification” is not the same thing as a diagnosis.
So writes Andrew Tirrell, a lawyer with the nonprofit organization Advocates for Children of New York, in City Room on the New York Times website (March 17). Tirrell took questions from parents and readers about the rights of students in New York City public schools; two parents asked about how getting an autism diagnosis for their children might affect the services and programs that might be received (I have italicized some sentences in the excerpts below):
My son has been medically diagnosed by Blythedale Children’s Hospital with PDD-NOS and more recently with Asperger’s Syndrome by a private psychologist. We want our son classified as autistic because his disruptive educational behaviors are concurrent with Asperger’s (rigidity, disorganization, ruminations … the list goes on). He is smart, and the school wants to either continue to list him as learning disabled or, I am afraid, they are poised to declassify him altogether. Are we wrong to continue to fight for a classification of autism for a verbal child? The doctors and educational world seem to be at odds as to what constitutes “autism” on the spectrum. We don’t want OHI because it is clear that this child has a medical diagnosis of autism and that is specific to what interferes with his education. Thanks for your insight … what a great service to us frustrated, confused parents. —–Sharon
My daughter is diagnosed as Asperger’s. She is now in fifth grade. During last four years she was in an inclusion program and demonstrated good academic performance but had some behavioral problems sometimes. Our school officials suggested to change her classification from “autism” to “multiple disabilities” and change her placement from inclusion to 12:1:1 (small) class in middle school. Their arguments is that middle school environment in a regular inclusion class would be too challenging for her (emotionally and psychologically). What are pros and cons of such a change in classification of disability? —– Irina
I find the one writer’s distinction between what medical professionals say her child has, and what educators do, of interest, and also the suggestion that an autism classification is unusual for a verbal child: Certainly we’ve known many autistic children who need a lot of structures and supports and self-contained classrooms, and who are more verbal than my son. (My son has always had a diagnosis and classification of autism.) Tirrell responds and indicates the practical value of certain classifications for different children (again, I italicized some noteworthy points):
The first thing to keep in mind is that “classification” is not the same thing as a diagnosis. The federal law governing special education, the Individuals with Disabilities Education Improvement Act (IDEA), requires that a student who is found to have a disability be classified in one of thirteen classifications. Although some students could be described by more the one classification, New York State requires that only one classification be included on the front page of the I.E.P. A classification should represent the disability which most affects a student’s education.
Additionally, there are practical reasons why a parent might fight for one classification over another, as there is often a strong correlation between classification and program recommendations on an I.E.P. The Department of Education at times may push for a classification that will result in a program recommendation that they think might be most appropriate or at least most available for a student. In your son’s case, there are very few programs available for students with Asperger’s. It may be that the pressure to classify him as “learning disabled” stemmed from the fact that most placements for students classified as having autism or being emotionally disturbed would not be academically challenging enough for your son. It may be that the education department was trying to recommend a classification that would be likely to result in a placement in a small supportive class with higher academics.
You may want to first try to identify a program which you think would be appropriate for your son (i.e., a nonpublic school, District 75 inclusion in a general education setting, an ASD N.E.S.T. program, etc.) and then argue for the classification which would be most likely to help your son get into that placement, rather than worry too much about what the classification is listed on the front page of the I.E.P. The rest of a well-written I.E.P. should describe your child’s academic and social-emotional needs, and explain his special needs in much greater detail than a classification ever could.
Tirrell’s post shows how classifying a child as having autism can occur more for reasons that are primarily pragmatic: Certain classifications can entail more services, such as a 1:1 aide, or more sessions of speech therapy and occupational therapy. As Washington University professor Paul Shattuck has noted, the prevalence rate of autism has increased since “autism” became an official category that states can use to classify children. At the same time, rates of mental retardation and learning disabilities have decreased; some children who are now classified as on the autism spectrum may not have been classified as such in previous years. Diagnosis is not a precise science: You do what you have to do to help a child succeed, labels aside.
Tags: asd, asperger, autism, Diagnosis, idea, learning disabilities, legal, mental retardation, parents, pdd-nos, special educationRelated Stories
POSTED IN: Asperger's Syndrome, Diagnosis, Disability Rights, Education
15 opinions for What’s In a Classification (vs. a Diagnosis)
Niksmom
Mar 18, 2008 at 2:12 pm
We have, unfortunately, seen the flip side of some of this —that schools cannot or will not classify a child as autistic b/c (in our state) the program is run through a different branch of the state DOE and the funding does not go directly to the school providing the physical facility. The reason given to us was not that, of course, but that Nik couldn’t accurately be tested b/c of his “language and mental age delays.” It also meant that the school felt that they did not have to provide 1:1 para/aide or any sort of additional supplemental services or supports beyond the boilerplate written into every student’s IEP at his school. We didn’t ahve the stomach for the fight, as you know. But we will have to take it up one day, I fear.
Niksmom
Mar 18, 2008 at 2:15 pm
BTW, I forgot to mention that my “assumption” is based on an actual conversation w/the former principal in which he asked us NOT to have Nik tested to discontinue another of his classifications until after a certain date —when the funds for the year are allocated based on classifications and head counts. He wanted to make sure the school got their funding first.
Marla
Mar 18, 2008 at 4:18 pm
In our case the classification always seemed to come down to funding. I never felt like the schools had my child’s best interest at heart. I felt like they were working to classify her for more funding or to declassify due to lack of funding.
We had to fight for months to get the school to go along with her diagnosis of Autism from several different doctors. It amazed me that they seemed to continually think they had more skill at “diagnosing” M. Granted, they were the first to admit they were not diagnosing her as much as they were picking the primary diagnosis for funding. Argh. Finally, we made a habit of having her tested academically privately and not relying on the schools testing alone. That helped quite a bit but not enough.
laurentius-rex
Mar 18, 2008 at 6:41 pm
As I have said for a long time, incidence proves nothing except for the way in which political and economic considerations drive diagnosis.
To go by the labels that have been given means nothing at all, it is a bloody mess.
As for me I am not a diagnosis I am an individual.
I am autistic in a sense politicians cannot yet understand but ought to fear.
Daisy
Mar 18, 2008 at 9:05 pm
My first thought was this: does the middle school offer team-taught classes, with a regular and special ed teacher working together? A setting like that can be very beneficial for kids, both special needs and neurotypical.
Beth
Mar 18, 2008 at 9:19 pm
Hi,
My impression (in Massachusetts) is that the category itself does not determine the level of assistance that a child gets; their performance level does. My son is classified by Mass DOE as “Autistic” and his CORE eval refers to him being at the high end of the spectrum “like an Asperger’s child” and refers also to ADHD; privately he is diagnosed with Asperger’s and ADHD. However, I think his placement is based on the demonstrated areas of disability and it needs to be specified what the current level of ability is and what the goal is. In other words, just having a label does not mean that you are entitled to X Y and Z; you need to display specific deficits in those areas compared to your peer group and the placement and services are supposed to be based on your performance. I think that this is how the law is written here but I could be wrong. This would make the most sense since the labelling thing is so subjective and two kids with the same label may not even need the same level of service.
Marla
Mar 18, 2008 at 9:57 pm
For many parents though they have to fight for a label in order to get any services. All of the states vary as to requirements. It is a severe mess. I don’t necessarily like labels but when it means services versus no services many parents are forced to fight for one.
Kristina Chew, PhD
Mar 18, 2008 at 10:30 pm
@Niksmom—you noted about that principal that “He wanted to make sure the school got their funding first”—-makes me wonder how funding needs for schools might drive some decisions……
@Marla, yes, a mess! This is the one aspect of Charlie’s odyssey, if I may call it that, that has never been in question. Charlie’s always had “autism” as his diagnosis—no mention of PDD-NOS, ADHD, Asperger Syndrome—-after his first IFSP, on which the St. Paul Public School District had given him a diagnosis of “communication disorder,” which he certainly has. But I think they gave it to us because, in those early days, I was in so much denial about what Charlie had.
@laurentius-rex, I think you are right about the fear.
@Daisy, thinking like a teacher—-maybe the school needs to juggle and change placements and classrooms to keep the changing needs of students in mind?
@Beth, thanks for those details—-Charlie does get a lot of services; Charlie has lots of challenges and testing makes that clear.
laurentius-rex
Mar 19, 2008 at 5:58 am
In the UK it is not so much the lable but the IQ cut off that determines what happens.
Since Asperger’s by definition is not diagnosed below IQ 70 you can see a similar problem, with the AS lable but changing it to Autism wouldn’t make a difference in that respect as it is this notion of IQ that matters most it seems.
Laura
Mar 19, 2008 at 8:07 am
We’re in Southern NY State, and my son needed an autism spectrum diagnosis (which we were able to get through the school psychiatrist) in order to get the OHI classification. He has wonderful services, which are very much designed w/his Asperger’s diagnosis in mind–through school, he gets OT, speech therapy solely aimed at working on “pragmatics” (he doesn’t qualify for regular speech therapy) plus being in an inclusion classroom, w/a full time teaching assistant, part-time aide and part-time special ed teacher (who team teaches w/the regular teacher)
joycemocha
Mar 19, 2008 at 10:12 am
A couple of quick comments from a special ed teacher perspective (who’s also a parent of an adult with autism).
First, educational labeling and medical diagnosis are two different things. Label criteria differs from state to state; for example, my state is not as restrictive as New York when it comes to identifying a student with multiple disabilities, as we can identify up to four areas on our IEPs. Educational labeling is (at least in our state) not as strict as the medical/psychiatric diagnosis via DSM IV. We do require a medical statement for identification of autism (as well as Other Health Impaired, Emotional Disturbance, and the physical disability catagories).
Secondly, when you are identifying a student, you have to decide what condition impacts them most severely academically, and go from there. In my state/district that’s supposed to identify the primary and secondary disabilities.
Thirdly, it really *does* come down to what the district can or can’t fund as far as services are concerned. Those decisions are not necessarily made at the school level, or even the level of the special education director–often that is a decision of the school board and the school district superintendent/upper administrative levels.
Another issue is that the special education teacher/case manager may want one form of program but must accommodate due to resistance from the general educators.
Must run, but there’s a lot to this issue that I didn’t know when I was just a parent, that now I deal with every day. Being on this side of the table after having been on the other side is very enlightening.
ariane
Mar 19, 2008 at 6:37 pm
I know I may be delusional (that’s what happens when you work for the NYC DOE for over 10 years) but, funding should never, ever be an issue. If the public school system can’t provide what the child requires, get an advocate, get a lawyer, and get your child a private education at the state’s expense!!!!
Regan
Mar 19, 2008 at 8:07 pm
In some ways this I agree with laurentius-rex.
This seguing in and out of categories may be one of the reasons that Jim Laidler wrote about IDEA data being unreliable. In my state we don’t need a diagnosis for entry into the classification of autism to receive services and the criteria is broader than the DSM. The translation is that we have, I believe, the highest autism rate in the US (and one-size-fits-all but legally defensible services, but I digress)..
I believe that every child should receive the kind of education that enables him/her to learn (quite a bit of technology exists, but implementation is the bottleneck), whether NT or SPED, but the classification thing highlights a disconnect between what we think is being counted and what is counted, and what lengths people have to go to to get individualized supports for their child/the student.
If someone is officially recommending services based on classification or choosing the program and then shoehorning the classification, then that seems to be all backwards and possibly illegal in reL FAPE and IEP process. It might be practical, but that indicates that some issues with distribution of services probably tied to $$ since placement is not a “place” but a set of Individualized services and supports based on the IEP goals (as our advocate has repeatedly reminded us ). I know however, that’s idealistic and the reason that people vote with their feet and hire lawyers.
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Mar 23, 2008 at 3:12 am
[…] What’s In a Classification (vs. a Diagnosis) How does a certain diagnosis—autism, PDD-NOS, Asperger’s—affect the services and programs that a child receives? […]
Melody
Apr 17, 2008 at 6:38 pm
Exactly. I was diagnosed with Asperger’s, but the level of services that I have needed over the years should have qualified me for the autism classification, but due to the stereotyped way of thinking of the AS diagnosis as “bright but a little shy”, It wasn’t until 10th grade I was made an IEP, and even then it just indicated Speech/Language, and it’s not until 12th grade I find out that it doesn’t even mention autism (which may explain why the little speech that I got just focused on pragmatics, which is not even close to what my needs are). Schools can be very difficult to negotiate with, indeed.
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