World of Laziness

Greetings Everyone,

This is just my take on the diagnostic labels given to the kids after the assessment. The labels play such a vital rule post diagnosis, as the entire life path is now being directed and controlled by that Label. A child will never be seen outside the context of that Label, everything the child does will be spoken in relation to the Label. There is nothing that is genuine or casual about that child anymore. If the diagnostic label has this much weightage and so many action plans, life plans are planned according to it, how sincere are the people involved in the process working towards ensuring the child gets the correct label, how are the processes designed to make sure that the label is arrived correctly, how are the professionals trained and kept up to date about the changing research findings around the world, to make an accurate assessment, how are we to ensure there is no political or pharma or corporate influences/pressure behind this entire process directly/indirectly.

I am sharing my observations from personal life incidents and information from my limited social circle to justify my view on this:

Incident 1 – Blood Test Diagnostic Results

Every year there will come a season, where the child gets a prolonged sickness due to Fever/Cough/Cold etc., even though you feel like you have seen all different variants of dehydration, viral fevers, bacteria infections, food allergy, climate changes, there will be some surprise incident, that will keep challenging our understanding. We had one such incident where our child had fever for 7 days, managed by paracetamol. He was active during this entire period, did his routines, no compromise on the food intake or routines. However since the fever lasted beyond 5 days, we decided to check with the Doctor to see if there is any recent trend of infections going around and also to confirm there is nothing serious about it. Doctor suggested having a blood test to ignore other aspects. So blood was drawn by the professionals for the test, after a day we got the results. The result said positive for Typhoid as per the Diagnostic Laboratory results. 

We visited the Doctor with the blood test report for the next course of action, this is where the experience was totally different to us. She saw the report for a few minutes and read his other vitals and history, mentioning this cannot be Typhoid. This is a Lab error. She spoke to the Lab and mentioned what mistake they made, in fact there were similar incidents she had in the past, where she went on to train the diagnosticians on how to perform the analysis and determine the diagnosis.

What we understood from the communication is that, certain blood tests have results that are absolute like Positive or Negative, and certain test results require correlation or professional experience (Depends on multiple parameters) to determine the result as positive or negative. This is where things could go wrong when the staff does not have the required training or experience.

Doctor finally explained, the child does not show any symptoms for a viral infection, the lab report is a false positive. We can ignore that, the fever should go away in a day or two, as the intensity has come down and the time interval between the recurrence of temperature rising high has increased. As expected within two days, everything turned normal with no new medications.

My view = There are professionals who could suggest medications based on a lab report, as the responsibility of providing accurate diagnosis lies with the Lab. So the actions a Doctor takes based on the report is totally Justified irrespective of its effectiveness or outcome. So how much scrutiny was done before a lab publishes a test report, on which the treatment is going to be planned ? In my opinion, None. Even if there is a wrong diagnosis done on the lab report, how can it ever be found and what measures are going to be implemented to ensure that incident does not get repeated. Again None in my opinion. What happens to the Patient who is impacted by an incorrect lab report ?

Incident 2 – Personal Loan Eligibility Criteria 

We had an unexpected family expenditure that required us to avail a loan from the Bank. We applied for a personal loan in my name, the background check process and my credibility were all checked to find out how much I could be eligible for and my repayment capacity.

To my surprise they quoted an amount which was less than what i have applied for, indicating the reason as my Low CIBIL Score (Credit rating). I explained to them, I never defaulted on any payments, I do not own a credit card, all my loans taken were settled off, etc. seeking explanation why is my CIBIL score low, when none of actions till date could have caused it. 

The explanation given by the bank personnel was that the score is low because there is no recent data on the CIBIL, as I was not using a credit card and no recent loans were taken. You need to keep making credit related transactions, so that you have an active Credit profile which results in a higher score.

I asked the bank, that since you know that my score is low because i did not have recent transactions and not because of a bad credit history, what is stopping the bank from availing the loan i have applied for, this is where the bank responded their decisions will be based on the CIBIL score (in spite of how inaccurate it is). 

My View = CIBIL Score is a standard that is being slowly established in India as a metric to identify the credit profile. If my credit rating was high 10 years ago, and I had no financial need for the next 10 years, so I had no loans, no credit cards etc, i managed my lifestyle with my earnings itself, my credit rating after 10 years would automatically get downgraded from High to Moderate or Low, because there is no credit activity and not because i am a defaulter. So presence of credit transactions gives a higher CIBIL score, absence of credit transactions should make the CIBIL score stay as it was or Neutral, but instead it gets lowered. This logic derives the score and I cannot change it, unless I play the game they are forcing me to do, which is to have an active card or apply for loans even when unnecessary. So the CIBIL score which should represent the Credit profile of a person is clearly flawed.

Incident 3 – Salangai Pooja for Bharatnatyam 

Our daughter has recently participated in a Bharatanatyam performance, where my wife had a chance to interact with mothers of fellow kids who are part of the group. The group had a girl who completed Salangai Poojai a year back. Salangai Poojai is a bench mark that a performer has done years of training on the basics, in other words you can expect a standard from children/performer who has performed Salangai Poojai. But that girl was part of the group who were doing a performance that was at the beginner level like some one would do in their first two years of training. The parent mentioned, the girl was earlier attended training under a different teacher for 3 years, where she completed Salangai Poojai, but from learning perspective she did not have the required skills for that level. Later they changed teacher, with whom she is learning the skills properly now.

My view = Salangai Poojai is kind of a benchmark certification or achievement for a dance performer, which itself can no longer be trusted, as there are institutes who does Salangai pooja for children who did not attain the skills or for the monetary benefits of it, or by simply going by the number of years some one has been attending the class. So the process is going to award some one even though they are not skilled.

Incident 4 – Indian children outside India

This is an experience shared by a fellow parent an India, who gave birth when she was in Japan. The child is healthy in all aspects according to Indian Scale of measuring the babies, however as per the Japanese standards, the Indian child was labelled abnormal because the child does not meet the criteria for a newly born as per the Japanese standards. The varying Genetic factor was not considered. 

Similarly a fellow office colleague working in Germany was invited to the clients house for a Dinner. They visited the Germany Family for the dinner with their India Family. The natural behavior of an Indian kid was considered by the German Family as Hyperactive and they gave advice to the India family to get the child checked with a Medical Practitioner. Again the Genetic factor was not considered.

My View = The scales of measurement differs according to the race, genetics, geographical conditions, research, etc.. so a single scale of measurement cannot be used to measure the entire population. Also respective scale meant for the specific scenario should be used to get a reliable outcome.

Incident 5 – Actual place of residence is not a Proof of Residence

If you are a resident in India who recently got relocated, the pain of making the address changed in your Government issued proofs is a headache that has no solution. In most cases, people just give up when it comes to keeping government issued ID proofs up to date with reality, not because of its complexity but because of its stupidity. I will give you one scenario, We relocated from Location A to Location B few years back, all our ID proofs are still pointing to Location A. We decided recently to make the address change, from investigating which proof is the easiest of all to make the update and what proof can be submitted to make the change etc… What we found is that, to make a address change to the Government issued ID proof, you need to submit another Government issued ID as an evidence. Not sure how i am going to pull that off.

My View = Now the irony is that, even though i am no longer in Location A , the Government document still continues to point to Location A and every other application i am going to fill will only treat my residence as Location A and will ignore the place where i am actually staying i.e. Location B. So the system actually went from ignoring the Place of residence where a person is staying 365 days a year because no paper that can prove that , however accept whatever address that is mentioned in any of the Government issued ID proofs, irrespective of its accuracy. So what is mentioned in the document need not be true, but everyone is going to follow it because its there.

Other Incidents

There are many other scenarios like this, for example you can hold a Car Driving License without actually learning it, belong to a community of your choice in the community/caste certificate, be a topper in academics with poor understanding, you would be treated according to the stereo type instead of giving an Individual attention or opportunity being heard, etc.

All the above incidents are highly generic in nature, which is no where related to the Neurodiverse world. Now lets shift the focus on few incidents that can be related to the Neurodiverse

Incident 1 – Speech Assessment – Language

I experienced this in the City, not sure if other parents have experienced it. If you visit to any hospitals or Therapy centers for an assessment from Speech and Language Pathologist (SLP), we find them following a questionnaire /checklist to ensure they cover all the aspects during the assessment to arrive at the accurate diagnosis. The professionals who are an SLP now or who are pursuing SLP i.e. students are mostly not a local i.e. who does not speak the language of the city. Also there is a larger extent of parents who married across caste / community / language / religion / geography etc. who are currently residing in a place that has never been part of their life earlier. So the assessment criteria is in English, most of the SLP practitioners or students make assessment in English, the parents are comfortable in conversing in English with them, as a result the child is also evaluated based on the English Language. The mother tongue is totally left out in the picture. It became an unwritten rule that most speech assessments are happening in English and checking the fluency and expression abilities only in English. Now this may not affect the family that speaks always in English, but when it comes to families who speak mother tongue predominantly or bilingual, making assessment based on the childs ability to express in English will not be accurate.

My view = The SLP assessment reports are subject to multiple representations, the score or rank they provide based on childs English language level and in one assessment sitting may not be accurate and should not be trusted as an absolute measure. We should have SLPs doing evaluation as per the childs language/mother tongue.

Incident 2 – Speech Assessment – Gender 

There is a biological distinction between the speaking abilities. Female children seems to be biologically motivated a lot to speak early, speak longer sentences, speak for longer duration, learn new words, usage of words etc. But this is not the case with all male children, there is a difference at a gender level, this creates a milestone differences. There are non biological factors that are deriving this as well.  (People should not confuse this with not getting required therapy when the male child is having delayed speech)

If the assessment criteria or scale of measurement are not gender specific, it means they are generalized. You can only achieve generalization by taking an average ignoring all important considerations and research and blindly go by a number or range.

My View =  By using a single scale of measurement according to age, if i were to perform an assessment on the child, a male child will most likely be marked at the lower range or below range, whereas the girl child would meet the range on most occasions.

Incident 3 – Occupational Assessment – Gender 

There is a biological distinction between the gender when it comes to moving their body. Male children likes to move a lot, jump, fall, run, climb, lift, throw etc.. they are biologically motivated. As a result their motor skills, co-ordination skills will be average or above average. However not all female children has the same motivation. This creates a difference in biological structure of the child. Female children have a lower muscle tone in general, they cannot lift heavy objects. So the same applies to a neurodiverse female children.

But the neurodiverse assessment criteria and recommendation would say, for lower muscle tone provide lot of heavy work activities. 

My view = As a professional, one should learn to switch the lenses when diagnosing an issue, like what is general and what is neurodiverse specific. Else everything can be an issue or not an issue.

There are so many such aspects, we can see from Psychologist assessments, special educator assessments etc.

In all the above incidents, the person in charge is following a process given to them, hence they are not doing anything wrong. So can we just accept the outcome as per the process ?

As a professional, when they perform an assessment they would have their own methods coming out of years of experience, professional judgement, skills, academic background etc.. This will cause a difference in the final diagnosis. So the Control board decides on a fixed set of process to ensure that you do not miss the important aspects, which are relevant. It does not mean, ignore your intelligence, ignore your professional judgement, ignore your knowledge, blindly follow the checklist, arrive at the score and provide the label as per the recommendation. This is where everything went wrong, the professionals are not motivated any longer to use their own methods and means, as there is no legal cover for their actions and outcomes. However if they follow what is given in checklist, even if there is no outcome or negative outcome, they are protected as they followed the guidelines.

I recollect from Ted Talk given by Mike Rowe who hosted Dirty Jobs gives an example of an episode where he is part of castrating lambs. As per the Humane society the process to be followed is to place a band on the scrotum and the tail to cut the blood circulation, after few days the subjected part will fall off. But the Shepperd, who has been doing this for years took a knife cut the tail, removed the scrotum and grabbed the testicles of lamb in a matter of minutes. When confronted with why not follow the process, he explained the pain and suffering the Lamb has to go through for a week when the process is followed compared to the Lamb with his method, who recovered in few minute or time. There exists a distinction between the Process and Ground Reality.

The approach of following the process and blindly following a process is causing issues at a global level in every industry. Processes were established so that people who are less intellectual or forgetful or lazy does the task in a particular manner, irrespective of their personal preferences or ego, to achieve the desired goal. This holds good at an assembly line, entry level jobs, etc. But at the Job that involves higher intelligence, Processes are making people dumb. They need freedom to think out of the box, consider parameters that were not part of the assessment checklist, ask probing questions to gather as much as information about the child, because when an intellectual person is analyzing the issue, they have to be provided with all the data, so that they can connect the dots.

When you do not ask relevant questions, many incidents will go unnoticed or even considered as never happened as a base line assumption.

Assessment Criterial, checklist, questionnaire, etc. are to be considered as a Guidance Framework i.e. something inclusive in nature and not absolute. It is only a bare minimum. The Professional has to go beyond that. Else it would just become an job the Artificial Intelligence will take over. A Global assessment criteria will never be accurate at the Global level. The control of deciding the assessment criteria is with one Country and based on the research or clinical study they performed on kids from their geography. Following this throughout the globe would result in false positives i.e. incorrect diagnosis and also kids with neurodiverse challenges may not be identified by the assessment methods.

CDC removed Crawling as part of developmental milestone. If there are neurodiverse parents, the one milestone that is guaranteed to have been skipped is Crawling. The child skips crawling and begins walking phase. This is one of the important milestone, missing it shows up later in different manner, however an authority in a different part of the world decided it is no longer important, so now it became a norm/process. Similarly some authority recognizes ABA as the only approved therapy and all other therapies are experimental. Such stand or perception will not benefit all children.

In my opinion, ENT checkups, Pediatric Dentist, Myofascial assessments are extremely important or rather take precedence over traditional assessment practices. The primary focus should be on the Biological aspects such as Adenoids, tongue ties, tonsils, jaw development, breathing passage, etc.

If our system is going to be only about following the process, then the labels that arrive out of the process cannot be trusted 100%. So this reflects on the poor results achieved on the Early intervention plan and the therapy program as well. A child will be kept in the same label, following a same therapy program, with no progress or outcome, because of the loopholes in the assessment process. You cannot question the professional , because they are going to blame the framework.

I am just imagining the below:

In the year 1997, Sanath Jayasuriya from Srilanka Scored 340 runs against India, which was a great record at that time. The important aspect with Jayasuriya batting is, how he take stands before each ball is bowled to him. He checks his pads, helmets, gloves and many more aspects before taking guard, (he did that countless times on that day) everything is meaningless and no where relevant to the him hitting the ball. However it is just part of his mannerisms. As per DSM criteria, he would be considered as performing repetitive movements and OCD and given a label.

If i see any Mani Ratnam Film, there is going to be lot of darkness, there will be scenes on a moving vehicle, the dialogues will be short etc… As per DSM criteria, he would be considered as having  Rigid Routines, Insistence on sameness and given a label.

If i were to call Amitabh Bachan is having a height disorder because he is above the average height of the Indian Male, he needs to work towards reducing his height to be considered Normal, until then he will be labelled with an disorder as per the process.

There are multiple examples of adults qualifying for multiple labels in the DSM criteria, what it says to me is that, as long as you are in control of the condition and it does not bother anybody, it is considered as ok. Having an issue outlined in DSM itself is not an alarming aspect.

Every human being is different in some aspects, they come with  peculiar or unique traits, which does mean something to them. But the Control authority things all human is to be of an expected height, weight, skin color, blood profile, manners, abilities, intelligence etc… any one who does not fit their definition (average), they have to call it something else, instead of admitting every person is different. They went one step above to call this as a disease / disorder and recommend a treatment for the same.

We should move from the context everything that is not normal is abnormal, we need to come up with better definitions. A lack of definition does not mean it is to be treated as an issue. This creates a huge responsibility on the Parent when it comes to interpreting the diagnosis, because now i question the very methodology that was used to determine it. There is going to be percentage of error in favor or against the child. Every Label/recognition/certification that is provided by every industry/professional/institute does not reflect the real picture.  

Parents needs to educate themselves, be critical thinkers, understand the diagnosis and the intervention plan, keep track on the progress to see, whether the diagnosis the child got is the right one or not.  Also use the diagnosis as a guidance, so that you do everything as a parent to your child and in addition to that, you factor the aspects that the diagnosis require as well. Do not restrict your parenting duties to delivering therapeutical aspects alone, which is only bare minimum. 

Almost in every industry, there is no ownership and no accountability. People blindly follow the process or rather only the process, whether it makes sense or not. This has made people extremely lazy and easier to replace. It is becoming very difficult to place our trust on people or brand or process or profession, every one has adopted to the corporate way of functioning, which focus on getting the job done quicker to earn more revenue. This is not a good overall, as we now have to hunt for genuine doctors, therapists, special educators, etc. instead of availing service from any one. Every decision and diagnosis may not be correct is the opinion we started to get, it takes multiple visits to different professionals to first agree on the issue, which itself is highly stressful. Just like watching 20 different news channels and 30 different websites to find out about a reality behind one news article, we cannot trust anything blindly.

This is just a rant, I have no idea why i feel this way. I am just questioning the system everybody else is following based on which critical decisions are made. When we do not get the desired outcome, we are upset over the child for not trying hard, where in fact there exists the possibility that the assessment mentioned something that the child does not have. From a child perspective, they do not see anything as an issue until we gave our perspective, so it is important that we get our perspectives from the right source and use our intelligence, before imparting it to the child. Just posting it out here to see if i am the only one feeling this way !

Regards,

Karthikeyan and Saranya