Diagnostic ABCs

Closely tied-to IF your child receives early intervention services is a diagnosis.

Originally considered a name for a medical condition, diagnostic labels have morphed into social descriptives in common vernacular.

No?

How many times have you heard (or said) “I’m depressed.” Or, in faux denial said “I’m not OCD, but I am a germophobe.” [I have behaviors that are not at the extremes of the-biological-awareness-spectrum.]

Ahem.

From before birth, if your child is known to have a visible physical anatomical anomaly, a microscopically-determined genetic difference or a wildly functioning heart  - your child could (should?) be referred for early intervention services.

Any medical designation diagnosis is likely to prompt an emotional response from a parent.

Some children, instead, acquire a diagnosis without all of the above, by growing physically but developing differently. Somewhere outside of the middle of the bell curve for when to walk or when to talk, someone notices. I call an early notice by a non-professional of a developmental problem ‘the grandma factor’. Many times during my career I have met families whose experienced members sensed something far earlier than a physician would acknowledge.

Another group of children, different from the first in that suddenly and without warning or indicator change. Seize. Have a seizure. Like an accident or injury, the first (recognition of a) seizure provides the shock and emotion parents in every group experience at diagnosis of their child.

Shock and emotion. In the context of news-that-can-emotionally-devastate or in the months or initial years to gain diagnostic clarity and treatment decisions, this is when early intervention is implemented. 

Complete, certain, multiple and accurate diagnosis colors every aspect of EI as a family-centered service to promote child development.

I will do a couple more posts on aspects of EI – to include the very common practice of many EI-service providers coming into your home (your private residence) and also a post (or two) on the credentials of those providers. Oh, yea, and the difference between OT, PT and ST. [Makes my head hurt, too, Rich.] Please chime-in if you want to prompt a certain direction for subsequent posts. 

A Soup of Letters

Not breaching any copyright here, the title for this post is a knock-off of this book title: Alphabet Kids: From ADD to Zellweger Syndrome by Robbie Woliver. (I’m hoping Robbie is as pleased as Dr. Polly was when I reviewed her book here. She sent me a thank you email message.)

This book’s longer subtitle: A Guide to Developmental, Neurobiological and Psychological Disorders for Parents and Professionals.  Alphabet Kids is a nice reference – if you are looking for a reference book. Alphabetized. Organized.  Thorough or extensive in breadth. 

This book also shows clearly how muddy the diagnostic lexicon is.

A few quotes:

One in Six. That’s how many children are estimated to have special needs due to what I refer to as Alphabet Disorders: Those interconnected neurobiological, developmental, and genetic illnesses that are rising in prevalence. p. 18

With as many over-lapping diagnoses as are apparent by this reading only, the statistical lead has little meaning and is beginning to feel trite. Like, here’s the shocking statistic to make the point of…or sell the information? This.is.very.common.

Perhaps I am the one who needs to get over it. My lens is “how does this statistic help?”. In the context of this book, 1 in 6 serves to emphasize commonality, but with subsequent narrative serves to demonstrate how meaningless this statistic is. The more (over-lapping) diagnoses included in the statistic, the less distinct the grouping shown in the statistic. Like, 8 in 10 people need vision correction.

Many parents are desperately trying to get a handle on what is wrong with their child, whether it is a life-threatening genetic disease, a complex and considerable disability, or just “quirky” behavior that negatively impacts some aspect of the child’s wellbeing. p. 19

Big gaps in the spectrum depicted in that sentence.

One particular element that I hope proves useful for anyone searching for answers regarding Alphabet Kids is the extensive symptoms list in each chapter. p. 19

The level of redundancy among lists of symptoms could be discouraging for parents. Not the author’s fault – so many diagnostic words apply to so many diagnoses. However, this may be as good as it gets for general-consumption-books on this topic.

Finding the cause is imperative, but it is a challenge. These disorders are often genetic or inherited, but some are caused by environmental factors or trauma. p. 21

What is your emotional response to the above sentence? I see it as another sweeping statement, so broad so as to cover every base and offer no clear insight.

I’ve read about or heard of near-all the diagnoses listed in Alphabet Kids. Developmental Gerstmann’s Syndrome is new to me. Mr. Woliver depicts some diagnoses within the story of a person. He does this well and the stories are an asset in this book.

Despite the confusion and mystery of every behaviorally-based diagnosis, I am confident and perhaps bold in stating that every behavior – every – is organically-based or subsequent to some neurological or physiological – physically internal and unseen, chemical and cellular – activity.

Off-the-top-of-my-head, I will throw-out a number  estimate 30 different physiological processes within the brain that, if any one or several are disrupted or dysfunctional, will affect behavior. Thirty - a number that might be wildly inaccurate, but I state it not for accuracy so much as to make a point. (Replace the word ‘many’ for 30 if you like.)  What is the mathematical number of different any-combination of disrupted neural physiological processes with just 30 with which to begin?  [Don't answer that question, please.  Even if you know.  Thank you.]

Specific treatment for non-specific diagnoses has a wildly inverse ratio to one in six. Unclear. Overlapping. Depending on what your physician (or therapist) was taught.

[My internal editor says I need to rephrase that sentence.]

There are MANY overlapping treatments for the many overlapping diagnoses listed in Alphabet Kids. Clearly, diagnosis is not the direct-line map to treatment or cure for many of these confusing behavioral conditions.

Outside of drugs and surgery (medicine), the home (and school) are believed to have important influence on children with almost every known diagnosis.

Early intervention. In.the.home.

Which brings me to a third item I just happened to check out from the library last week [except that I don’t believe in coincidence.] I viewed this movie on dvd:
Her name is Sabine. An independent film by Sandrine Bonnaire.

Apparently Sandrine Bonnaire is well-known in France – an actress, I think. (Perhaps my French Friend will let us know?) I watched with English subtitles. 

This film is unique in that Sandrine had filmed her sister, Sabine, many times when both were younger. Video clips of young Sabine are spliced with video of her more recently while telling her story of ‘being a different child’ to a potentially-dangerous adult who was institutionalized for 5 years.

The description on the cover provides indicators for what to look for while viewing Sabine. At the time of publication, Sabine lives in a group home. The cover description indicates that the group home is the optimum living place for Sabine – and only recently available.

My perception is that group homes are held-up as the ideal support system for all concerned. Group homes can be optimum, difficult to find a good match, expensive, and any one placement might not last the full lifetime of a resident. The caregivers at Sabine’s group home were loving and appropriate. They were kind but not enabling.  Ideal.

Another intended message of this film, I interpreted from the cover, is: Institutions are very bad. All bad.

As shown in the film, I would agree that Sabine was overmedicated while she was institutionalized. At the same time, I think institutions (nursing homes, state schools and hospitals – all BIGger group homes) need to remain on the spectrum of care available to families of children with alphabet diagnoses. I am unwilling to judge a parent’s decision for placement of their child.

Oh, and the single diagnosis included in Sabine’s story: autism.

Comments

[datri]

My older daughter has a diagnosis of PDD-NOS, which was given by a psychologist because we needed a diagnosis to get services. Of course, the screening test relied heavily on parent reporting and of course I knew how to report in order to get the diagnosis. How ridiculous is that?

[Danette]

I agree with you about the biological basis of behavior... the tricky part is trying to figure out what specifically is going on when we're trying to understand a particular behavior.

I have to admit, the "in the home" part of EI seemed a little weird to me at first. Having always taken our older boys somewhere else for therapy, it was a little strange to actually have therapists for Bitty coming to our house instead. I see the value in it though, they are able to work with children in a familiar environment.

[The Barbara who lives here]

Very ridiculous, datri.

Diagnosis via behavior is suspect when the credentialed individual relies heavily on non-professional report, and yet, this.is.very.common. Not surprising that parents like Robbie have sought to sort-out a means for understanding the quagmire of diagnosis.

Thank you again for good use of your hammer in finding a not-so-obvious nail in my post.

It means a lot to me when you agree with me, Danette. Thank you! I have said - elsewhere for sure, but maybe here - that until the physiological source of autistic behaviors is found, the best treatments remain unknown.

I hope I am showing how hard it will be to find that source (30 different possibilities and combinations).

[Stephanie Nance]

I never thought of a group home as a mini-institution. My friend Donna's daughter with DS lived in one until recently. From what I understand the residents fully understand how to get away with all kinds of mischief because the staff have very few effective (and legal) methods of discipline. Not what I want for my son. Incidentally, a group home is being built across the street from me!

[The Barbara who lives here]

Ah, the group home as mini-institution - another nuance I had not phrased. Thank you, Stephanie. The difference I see between any living situation other than family is the difficulty in regulating staff attitude. Well, it is probably 'difficult' to direct family attitude, too.

I'm re-thinking my comment just above. 'Suspect' may be the wrong word there. Perhaps the problem both datri and I see is that the professional does not really know the child, but has the power to label the problem.

[Katy]

Diagoses are interesting. I know a girl who is F-I-G-H-T-I-N-G to get one so her child can go to early-intervention preschool. Meanwhile, Charlie has diagnoses to spare. I've joked that we have enough diagnoses for a couple of kids.

[The Barbara who lives here]

Katy you provide another conundrum of diagnostic abcs - agendas meant to restrict services. I am less than sympathetic to those who follow the "he'll outgrow it" philosophy. Of course, I have mostly worked with those who did not outgrow "the grandma factor". I do not know how many children really do outgrow early indicators of a need for EI.

[Julie]

Diagnostic categories have done more than morph into a social descriptive. They have morphed into a requirement for funding of services. And, I suppose a day might come when the services a child with a functional deficit for one diagnosis differs significantly from a child with the same deficit and a different diagnosis, when speaking about behavioral deficits we simply aren't there yet. A child who has poor social skills because of FASD and a child whose poor social skills can be attributed to autism or a non-verbal learning disorder are the same. I wish that funding was based on functional status instead of diagnosis.

[Finding the cause is imperative, but it is a challenge. These disorders are often genetic or inherited, but some are caused by environmental factors or trauma]

My emotional response is that this is scary. I see it leading to a sort of eugenics aimed at getting rid of people whose brain works differently.

My other thought... in the area of list overlap. When Marissa and I went to a class on The Culture of Poverty (the trainer was trained by Dr. Ruby Payne), I was struck by the number of behaviors listed as behaviors associated with poverty are also listed on the list for FASD, ADHD, bi-polar, etc.

[The Barbara who lives here]

Julie, I agree with you on every point. I have often mused on the idea of measurement of functional deficit - that is, other than IQ testing. I made a mild reference to this on my page "On Intelligence".

Helping children become more FUNCTIONAL is no more easily achieved than finding the cause of the myriad of brain differences currently known and recognized.

However when I read one of your recent posts, I was struck by the consistency of behavior problems among children with FASD. Made me think that the effects of alcohol in utereo are altering specific anatomical development or neural processes and at a precise time in development.

I get scared sometimes, too. Not wanting to delve into hyperbole, I fear a slippery slope for identifying functional deficits accurately. At the core of this is not valuing all life or setting parameters for whose life is valued or has a right to live.

Regarding poverty and diagnostic labels - a very interesting point. I will leave it at your notice of similarities, for the time being.