The Bell Curve as a Diagnosis Tool.

One of the tools that was used to diagnose Katie's ASD was the bell curve.   Thought I would post some information about the sort of testing that helps professionals make these diagnosis.  Katie's IQ is well with in normal range but her adaptive functioning has significant deficits. This post is not to imply that your child has any level of retardation-not at all.  However, understanding the Bell Curve also helped me to understand how the ASD may impact her future as far as integrating into society.  Section #2 may seem that it relates to your child more than section #1 does but section #1 includes a lot of explanation of the test itself.

1) Intellectual Functioning and Intelligence Tests

All definitions of mental retardation require that the individual have abnormally low intellectual functioning. The two most widely used definitions come from the American Psychiatric Association and the American Association on Mental Retardation (AAMR). The American Psychiatric Association (APA) describes mental retardation in the Diagnostic and Statistical Manual, 4^th Edition, Text Revised (DSM).

In general, the DSM codifies psychiatric diagnoses with sets of specific diagnostic criteria. The diagnoses are not tied to an etiology and the criteria are usually broad enough to allow for considerable heterogeneity among people sharing a diagnosis. In the DSM, a diagnosis of mental retardation requires an IQ of “approximately 70 or below” as well as deficits in two areas of adaptive functioning (described below). The DSM definition further codes mental retardation by severity. Mild mental retardation has an IQ range of 50-55 to approximately 70, moderate mental retardation has an IQ range of 35-40 to 50-55 and severe mental retardation has an IQ range of 20-25 to 35-40. Persons with an IQ below 20 or 25 are diagnosed as profoundly mentally retarded. The DSM allows for the diagnosis of “Mental Retardation, Severity Unspecified” when a person appears to have deficits consistent with mental retardation but is too impaired or uncooperative to be tested. There is also a diagnosis of “Borderline Intellectual Functioning” that is associated with IQ in the range of 71-84 (APA, 2000).

Among the 26 states that define mental retardation in statutes prohibiting the death penalty for people with mental retardation, ten generally follow the APA’s diagnostic criterion and specify an IQ of 70 or below. (Illinois is an exception, with a specified IQ of 75 or below). The other sixteen states and the federal government define mental retardation with language adapted from the AAMR’s 1992 definition: “Significantly subaverage general intellectual functioning” with emphasis on deficits in adaptive functioning (AAMR, 1992) and do not specify an IQ score.

Intelligence tests are standardized tests that measure a person’s intellectual capacities and compare that measurement to a population’s scores. Standardization is accomplished by training the professionals who administer the tests (usually psychologists with a clinical doctoral degree) to administer the same tests under the same conditions every time. Persons taking the tests should be rested, comfortable and alert. The test-taking environment should be quiet and without interruptions. The test is administered in a specific order and each part of the test is timed. The tests are scored and interpreted in a standardized fashion as well.

The test is normed with the average score defined to be 100 and people are compared with others in the same age range. In a random population of individuals, IQ scores will be distributed in a “normal” distribution or a bell shaped curve and the variability of scores is predictable. Two thirds of the population will fall within one standard deviation from the mean score of 100. The standard deviation (the spread of variation from the mean) is about 15 for intelligence tests. Two thirds of the population will fall in the range of +/- 1 standard deviation with scores between 85 to 115. Two standard deviations will capture 95% of a population. This corresponds to the IQ range of 70 to 130. The APA’s Council on Psychiatry and the Law defined “significant limitation in intellectual functioning” to be two standard deviations below the mean, similar to the DSM-IV TR criteria of an IQ of approximately 70. The term “approximate” reflects the standard error of intelligence tests.

There are several versions of intelligence tests which vary in length and target population (children or adults). The most commonly used are the Wechsler tests that are known by acronyms such as the WISC-lV (for children aged 6 to 16 years) and the WAIS-lll (for ages 16 through adulthood). The WAIS is in its third edition; the WISC recently was updated to a fourth edition. Because the Wechsler tests are so widely used, the reliability and validity are better than lesser used tests. The WAIS-III is made up of fourteen sub-tests, Seven subtests contribute to the verbal subscale: information, comprehension, arithmetic, similarities, vocabulary, digit span, and letter-number sequencing. Seven subtests contribute to the performance subscale: picture completion, digit symbol-coding, block design, matrix reasoning, picture arrangement, symbol search, and object assembly.  The test also provides a composite, single full-scale IQ score based on the combined scores.

Although intelligence tests are standardized, there are influences that may distort an individual’s score. Cultural and educational factors are thought to influence measurement of intelligence. The Flynn effect is another potential problem. This is the finding that IQ scores tend to rise over time. In order to keep the average score at 100, the tests are renormed periodically, making them slightly harder. The renorming of intelligence tests might distort an individual’s intellectual abilities at the end and beginning on a new edition of the test. At the end of a test edition cycle, an individual with borderline or mild mental retardation may score five or more points higher on the older test than on the newer, more difficult edition (Kanaya, 2003). An additional problem of IQ scores is the possible increase in scores after repeated testing because the person taking the test has had practice with the tasks. Practice effects are more prominent when retesting occurs within a six to twelve month period and primarily affects the performance subscale.

                       

2) Adaptive Functioning

In addition to the criterion of decreased intellectual functioning, the definitions of mental retardation all require evidence of problems in adaptive functioning prior to age 18. The APA definition in the DSM describes this as “deficits or impairments in present adaptive functioning (i.e. the person’s effectiveness in meeting the standards expected for his or her age by his her cultural group).Deficits in two or more of the following areas are required for the diagnosis: communication, self-care, home living, social/ interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health and safety” (APA, 2000). The AAMR definition includes the subaverage intellectual functioning described above plus limitations in conceptual, social and practical skills during the time period prior to age eighteen. (AAMR, 2002). The AAMR emphasizes that problems in adaptation are directly related to the demands of the environment.  

The AAMR has published an assessment manual which matches skill areas in conceptual, social and practical domains with assessment instruments such as the Adaptive Behavior Scale. The Vineland Adaptive Behavior Scale is another widely used test of adaptive skills. These scales measure a wide range of abilities such as feeding self, the use tools or utensils, the use of the toilet, the ability to handle money and the ability to follow current events. Although the instruments are standardized, there is a greater role for clinical judgment in assessing adaptive behavior than in measurements of IQ.

The clinical definitions of mental retardation require onset of decreased intellectual and adaptive functioning prior to age 18, reflecting a problem in development. Some state statutes specify a different age such as 22 in Indiana and Maryland and other states do specify any age. It is likely that some individuals suspected of having mental retardation did not receive IQ tests and adaptive functioning assessments prior to age 18. In these cases, the assessment must include a careful review of old records for evidence of lower levels of functioning and testing of the individual in the correctional environment.

Evidence of decreased intellectual and adaptive functioning before age 18 may be found in school records, social services records, juvenile justice reports, military records, employment records and pediatric records. It is unlikely, for example that a mildly mentally retarded person would score near the average range of a school achievement test. It is more likely that such an individual would be identified as “slow” some time in early gradeschool, score very low on school achievement tests, require special education classes and an Individualized Education Plan (IEP). If IQ and disability assessments before age 18 are available, the tests and standards may be different from those in current practice. It is valuable to have interviews and reports from teachers, parents and other caregivers although retrospective information is less reliable than contemporaneous documentation. An evaluation of past functional abilities should include multiple sources (Bonnie, 2004The assessment of functional adaptation in the correctional setting is problematic. Areas of functional disability included in the definitions may not have a relevant counterpart in jails or prisons. For example community resources, leisure skills and self direction have little or no application in an institutional environment. It is likely that a mentally retarded person will show better adaptive functioning in the more structured correctional environment than in general society.

References:

American Association on Mental Retardation, (2002) Mental Retardation: Definition, Classification, and Systems of Supports Ruth Luckasson Ed., 10^th Ed. AAMR’s website is www.aamr.org.

American Psychiatric Association (2000) Diagnostic and Statistical Manual of Mental Disorders, 4^th edition, text revised.  Washington D.C..

Bonnie, R.J. (2004) The American Psychiatric Association’s resource document on mental retardation and capital sentencing: Implementing Atkins v. Virginia. J Am Acad Psychiatry Law 32:304-8.

Finlay, W.M. and Lyons, E. (2002) Acquiescence in interviews with people who have mental retardation Mental Retardation 40(1) 14-29.

 Hurley, K.E. and Deal, W.P. (2006) Assessment instruments measuring malingering use with individuals who have mental retardation: Potential problems and issues.  Mental Retardation 44(2) 112-119.

Kanaya, T., Scullin, M.H. and Ceci, S.J. (2003) The Flynn effect and U.S. policies: the impact of rising IQ scores on American society via mental retardation diagnoses. Am Psychol 58(10): 778-90.

It only happened in MY mind

"Well Doc, whaddaya think?"

"You really think the Asians want your eyebrows?"

"Why- I don't know. Corporate secrets woven into the strands, perhaps. Seems like a strange place to hide them. I wear make-up every day- things must be getting all smudged up."

"Yeessssssssssssss, eyebrows don't really seem a suitable hiding place for corporate secrets." His fingers were touched together in the steeple position. "How do you suppose these people, masquerading as salon technicians, got the secrets in your eyebrows annnndddddd how are they getting them out?"

"Well, I'm sure they'll use the transmitter they implanted in my toenail to send out a confusing sonic noise that will distract me."

"A confusing sonic noise? From your toenail? A transmitter?"

"I'm thinking so!" I turned my head and gave the doctor a slight wink. "Of course its just a theory."

"Here's my theory, Mrs. Miller"
I winced. No one calls me that, it makes it harder to deny my age when I'm addressed that way.

"You're on the hunt for a script."
This is definitely awkward....I looked down and to the side.

"What are you serving today?" I say meekly.

He scribbled on his pad. "This should take care of your issues, Mrs.Mikowski." Cringing again, I took the little square of paper. "And, Mrs. Miller-"

"Yes?"

"Never, ever, call my office again."

"Thank you, Doctor" I say graciously while waving the script in from of my warm cheeks.

Just then I felt a tug on my shirt.

"Mooooommm-" I look down at Katie with some annoyance as usual. "What?" "When is the doctor going to talk to me? Isn't this my appointment?"

"Oh Katie, why does everything have to be about you? Come on, we have to go find you a new doctor. This one is all used up!"

How To Evacuate a Daycare.

Of course my story involves Katie. Now if you have ever doubted Karma- don't. Katie is my consequence for that summer I spent sneaking out at night to run the town with my friends. Kayla is my consequence for all those quick little trips I took down the basement stairs to sneak a swallow of the blackberry brandy stored in that scary little moldy room. Katie is the consequence for the time I stole the pumpkin from outside the Buy Rite in Hesperia only to realize that it was larger and heavier than it appeared and that theft should probably involve a get away car- something most 16 year olds of humble means don't have at their disposal. Yep, Katie.

Katie is going through a bad patch right now. It's hard for an almost eight year-old to figure out the ways of this crazy world. She's frustrated, all tied up into a tense little ball. She's taken to well- taking. Four episodes of recent add up to the reason for this post.

First- she stole a- oh hell, I can't even remember now, then she stole an ipod from my friend's little girl. Right out of her house! I should have been smarter than this, I should have questioned that odd little detour she took before we left and patted her down before leaving, but I was tired that day. Then on a walk through the path we made where our property borders the woods I found a hand held radio. Hmm, I already knew how it got there. Only, it was not a radio but, rather, some expensive little navigational device that formerly lived in my husbands dresser.

He was not happy. He doesn't even know about the ipod. I used my Motherly and Wifely discretion on that score and decided it was better all the way around that he not know. And then, last Thursday, I used the discretion again because some incidents are just beyond the comprehension of ordinary MEN, and because I don't have life insurance on my husband I didn't want his head to spin around on his neck until it popped off. Another day, perhaps.

Seems that our daycare, which I love- it is run by these energetic young Christian people who never run out of second chances for small delinquents, has been updating their security. Protocol set out by their administration required that they have certain equipment on hand in case of emergency. (and a frickin alarm at the door so that every day I have to settle the fight of who gets to punch the code in and then I promptly forget to punch the green exit button on the way out so an alarm goes off and I have to yell "sorry" at the top of my lungs so these very same Christian Youths don't come running to stone me to death, have I mentioned how much I am loving being a mother....) but back to the supplies-

Somehow in between the unpacking and the logging in and the decision of where exactly to store it- a large can of Mace went missing. Yep. "Missing."

The perp apparently took the can of "pepper spray" as she later called it and I still to this day don't know how she knew to call it that- and hid it in a room behind the curtain. The next day this same perp, on "free time" retrieved the stolen article and took it in a bathroom to spray large amounts of it. Then she quickly exited the bathroom, allowing a cloud of chemicals out into the general area. A couple of children coughed, workers descended on the bathroom, children were ushered outside for yet another recess. The director of the daycare who had just left work was called back in to assess the situation. All this time I am at work, working away, thinking it's just another day at work.

I'm always a little suspicious when the director approaches me looking me directly in the eyes. It hearkens memories of previous discussions of Katie daring other children to bare their bottoms or other such situations. I fought the urge to look the other way and then bolt into the bathroom. But today, Ms. Director was quick. I had no chance of a get away. So instead, as she said that she needed to discuss a "situation" with me I went right to whining. "NO, Please- it's been a long day- I don't want to hear bad things, can't you write it down, give it me all folded up and ask me to call you tomorrow and I promise by the end of the week I will call you?"

She laughingly assures me that everything is "Okay-now" which to me means uh oh, this was a bad one- I hope it doesn't involve nudity. Then continues on to tell me the story which I only hear parts of as I am thinking "OH MY GOD! What the hell? Just when I thought it couldn't get any worse? Were the police called? Am I being sued by some parent of an asthmatic child? Is this it? Do I have to find a new daycare or can I solve the problem by taking the kid directly to Foster Care? Really, you got called back into work? That would really piss me off, good thing you are so young and Christian hearted- you're amazing! Can I buy you a beer? Cuz, God knows, I could really use one right now!"

She was at the point where she could see the humor in the "situation" as she explained how she handled Katie. She told her that everyone at daycare still loved her but that they were disappointed in her choices. She would have to miss the next field trip outing. Katie tried to negotiate terms as well. She begged Ms. Director not to tell me. She swore that she would tell me herself and that would be "OK". When Ms. Director kindly but firmly told her that would not be happening Katie threw herself on the floor claiming "They're going to send me to Juvie, they will, they will!" Katie is a fire sign, I have to face it, there is at least ten more years of drama in front of me.

Ms. Director assured her she would not be sent to Juvie. I assured Ms. Director that it was probably my husband who put that thought in her head after she stole his "Garmin Satellite navigator". He means well. But back to Juvie....it does sound like a possibility at this point.

As the story unfolded I could tell I would have to do some thinking on this one. I was so very tempted to drive right over to the State Police Post and ask if they could give her a stern talking to and show her the inside of a cell but, as I always try to think of every possible outcome to every situation- was a little concerned they would take down my information and report me to social services for being so very inadequate as a mother. More thinking.

I came home with very docile eight year old who took me very seriously when I told her to be quiet and sit still as I had some thinking to do. The other child was also quiet. Somewhere in her little heart I know she was gloating over her cousin's situation. But, this child has always known when to stay "small" so as not to have any trouble attach itself to her.

On my answering machine was a call from a friend I hadn't heard from in awhile. She cheerfully apologized for not keeping in touch but if I had a moment would I call her as she had a "decorating" question. Sorry, Friend, I currently am only trading free decorating advice in return for advice on how to keep my kid out of Juvie.

Before we had the diagnosis.

So I have this problem. I wouldn't typically share this type of information. But here I am with no easy solution. Perhaps its time to throw it out to the universe and see what the universe serves back. I am beyond disappointment and feeling pretty hopeless.

We are raising my niece. My sister was ill prepared to care for herself when she found out she was pregnant- let alone raise a child. There were plans in place for us to adopt her but a well meaning (but criminally stupid) friend of hers told her she'd be able to get assistance from the state and that she would just love the baby so much that she'd (turn into someone else, I suppose) be able to mother this child. So when the child was three my sister asked that we take her. Of course we knew this would happen eventually and this was when we came to have Katie as ours, that very day. We didn't know what we were in for.

Katie is super smart. She threw screaming fits for months but at three you can deal with that. She has ADHD which makes her so intense that she has a hard time forming and maintaining friendships. She wears on our daughter Brooke. She was diagnosed in kindergarten and we had high hopes that the medication would help everything. It did not. It did stop the incessant noise making and make it easier for her to concentrate on homework. Still, I begged the doctor- we still have so many behavioural issues- the kid would argue with me if I made eye contact with her. She way over reacted to everything. Stealing began to surface as a problem.

I have been convinced that either she needed a different medication or the addition of a medication to the current one. Finally, after jumping through all sorts of hoops, seeking counseling which I was happy to do, putting her in Karate (at a cost of $130 a month, mind you, plus uniforms and equipment) finally, the Dr. gave us a prescription that would help with her aggressive behavior. Apparently arguing and the over-reacting is a form of aggressive behavior.

It was like magic,that medicine. Make no mistake, she should have been on that two years ago, maybe we wouldn't be where we are today. If I sound angry its because I am. I put my trust in professionals to know more than me and I asked for help. I get the part where they probably hear my story from parents all the time so they have a process they follow. But I asked for help every time I was at that office and the whole time one little piece of paper would have made my life and her life a lot better day in and day out. She and I deserve better than that.

I had high hopes for her for third grade. It was my best year. I loved it and hoped she would too. Especially with this new medication. But the stealing which I thought we'd addressed between her teacher, the principal, the counselor, and ourselves has not abated. She's gotten better at hiding it and better at lying about it when I do find an object that I know is not ours.

In the last two weeks three, now four incidences show me that not only has the stealing never stopped- it is now constant. Last Wednesday was my husband's second day on the job after nine months out of work. He was given a camera to keep in his truck at all times in case of an accident (Yes, that's right, get out the big plaid shirt- I'm now a truck drivers wife- ye gods and yee ha, that's a whole other reason to be anxiety ridden but that's another post, just be glad we're back to work on all fronts) In the short time from the house to the end of the driveway the camera disappeared. My husband was beyond angry. Its a good thing she was gone. You don't start a job after nine months and only two interviews and go in and tell your boss you already lost the camera he gave you on day one. Its that important that things go well. Jobs are non existent in Michigan. The ones that are around pay easily 5$ less than they would have 5 years ago.

Then I found the candy that came from a store. I had already taken back some small items to a business before the camera incident. Today- after being so despondent all weekend that I flat out tell her "I can not talk to you, I am so upset and I don't know what to do with you, this can't keep on like this." - I found some small electronic gaming thing in her dresser drawer. Of course 'a friend gave it to her to help her with her math'. 'Just tell me the truth' finally gets me an "OK, I stole it".

So here I am. We've already told her that there was a police report filed and that an officer would be coming to question her. We're trying to rustle one up through a friend. I've yelled, I've screamed, I've spanked. We've counseled, the teacher's tried, the principal has tried. We have tried implementing positive re-enforcement of good behaviour. Her mother has talked to her. We've driven her past jails. It all scares her. Sometimes she had stopped until the danger of consequence has passed. She really does hate getting in trouble for it but has separated that out from the crime itself and just tried to get better at hiding and covering up. She's good. I'm not stupid, I know I have a relatively short amount of time to turn this girl around but nothing seems to make a dent.

I'm frustrated and worn out. The other little girl has her own little issues. Perfectly normal small, inconsequential issues. Obviously Katie has a need she's trying to fill. I know she wants more attention from me. But honestly the more she argue with me the more I want to get away from her. Now that the arguing isn't so prevalent we just have this one last huge insurmountable mountain to cross, right? Except that I am about all Katied'd out. Four years, folks, of constant battling will do that. I'm tired of having my household disrupted to this extent. This morning I apologized to Brooke. "I'm sorry Baby, you shouldn't have to see Momma like this, she doesn't want you to see her like this. I'm sorry I've been so upset for so long." So add in the guilt of having Brooke's child hood altered from what it could be and not so suddenly I am less and less willing to fight the battle of Katie. I'm at the point where I really don't see a solution that I can believe in. I'm not rallying, I'm tired. I'm despondent and not only do I want to give up I'd really just like it to be over.

So if you have a suggestion or a way out of this feeling- I'm open. I'm listening.

Oh, yeah... this blog will have inappropriate posts...

 "Mrs. Collier- could you hold for Principal Smith?" Back story- I'm in tile store shopping and chatting with the salesperson who unfortunately knows and sees me on a regular basis when my cell rings and I see the school phone number. I swallow and try to act natural.

 "Mrs. Collier, I'm sorry to bother you but there's a problem. Katie brought some little bottles to school in her backpack. She took them out at lunch today. She says she thought they were food flavoring and I believe that but...they were alcohol. I've checked the policy book and unfortunately, even though she is only in 3rd grade, Katie has to be suspended for 1/2 a day. I'm so sorry but could you come pick her up?"
Back story- two years ago for my 40th birthday I was given a sample pack of schnapps, four different fruit flavors. I don't drink sweet alcohol. I'm German/Irish and prefer a nice beer. I'm also the child of hoarders so how could I throw out three perfectly good, free, pretty little bottles of schnapps when we all know the minute I throw them out I will need them for something. At that moment I had to decide if I should go in to all that with the principal just to let this kind, decent, upstanding man know that I am not a raging alcoholic or if I should please ask him to return all four bottles so I can hit them in the parking lot before I go home with my child.