The Hidden Costs of a Special Needs Misdiagnosis
By Devishobha Chandramouli
Parenting is tough, but parenting a special needs child definitely needs a complete reset in the way we do everything. Interestingly, there is an alarming rise in the number of misdiagnosis incidents of special needs. Experts put it down to various reasons – from having pre opinionated parents to getting partially correct information to simply advice taken from the wrong quarters.
Misdiagnosis is more common than we think, but most of us do not fully understand the implications of a misdiagnosis.
Today, I spoke to Dr. Samir Dalwai on understanding the right approach to helping our children meet developmental milestones. Dr. Dalwai, a developmental pediatrician, founder of The New Horizons Child Development Centre, and former chairperson of the Indian Academy of Pediatrics’ Chapter of Neuro-developmental Pediatrics.
Devishobha: Hello, Dr. Dalwai. Thank you for being with us.
Dr. Samir Dalwai: Thank you. Parents are understandably anxious when their child seems to miss some developmental milestones. One of the most common reasons for misdiagnosis is that parents, in their anxiety and denial, do end up taking advice from all and sundry for ‘general improvement’ or from online sources or whoever is easily available nearby. When parents come to see me, I often don’t see them having a written diagnosis or even a paper stating the problem they were told and are receiving intervention for (though being charged). In my practice, I see so many parents walk in with their ‘ADHD kids,’ but my evaluation diagnosis would reveal anything from a normal child to an emotionally disturbed child to a spectrum disorder!
This kind of misdiagnosis is a serious impediment to the child’s development. For example – a child with speech problems could be suffering from a more serious neurodevelopmental problem or any other medical problems like experiencing a liver swelling – but if the problem is misdiagnosed and the child is made to hear nursery rhymes on loop or put on apps to ‘learn’ words to help learn words and singing, it may make that child just repeat those words without any comprehension skills. A wrong diagnosis usually leads to the wrong treatment course, and it causes more harm than most of us ever realize.
Devishobha: I would like to begin with asking you if a misdiagnosis is followed by therapy- what harm can a few months of therapy really do?
Dr. Dalwai: A lot of damage! For one, the time you spend doing the wrong therapy is delaying crucial intervention time for the child. Secondly, a therapy that focuses on the wrong areas only makes the child worse with the actual problem he/she faces and ends up training the child in the wrong area. Some may focus only on a part of the problem – hence, even if that bit gets better, the child isn’t really doing better in real life. For example, some activities used to reinforce sitting tolerance may not be relevant activities in real life- so the child has great “sitting tolerance” in the clinic and none at home. Often, parents end up doing those same activities at home just so that the child sits – thus creating a bubble or an artificial world for these children. Hence, there is a crucial difference between therapy and therapy appropriate for that child at that time. That any therapy can do no harm is a wrong notion.
Devishobha: Who should parents seek for a diagnosis of developmental delays?
Dr. Dalwai: A developmental pediatrician is trained to assess the child on the child’s overall development and well-being. The first step would be to consult one so that no aspects of the situation are missed, and you get detailed written/documented opinions and advice.
It is crucial to get a written report of whoever you consult for your precious child. Parents often tell me we were doing therapy, so they would write their own notes of what was done, and we didn’t expect anything to be given to us. Any professional working with your child is mandated ethically and legally to provide you with their opinion and plans for the child in writing – even the counseling should have paperwork – it is your right. This is strictly followed abroad and in every other medical field in India, except in special needs. Why should there be no accountability in this field?
Devishobha: When a child begins therapy, what is a good time to start expecting results?
Dr. Dalwai: With a good diagnosis and a well-made therapy program, you would be told what improvement to expect when. Each condition would have its own time frame, which certainly can be explained to you. However, when you are given general answers or given ‘nobody can really say’ messages (especially without anything in writing), your alarm bells should start ringing.
Devishobha: What about in the times of the pandemic?
Dr. Dalwai: I would say the pandemic has actually helped parents reach out to developmental pediatricians that are not geographically friendly to them. We have parents connecting to us from all over the world. In our program, once a month, a development pediatrician from our clinic sees the child, assesses him or her based on the milestone chart, notes what needs to be done to get to the next milestone. We then make a goal of milestones over the next month and map activities to meet the milestones. The next part is the most important part – we actually coach the parents to do these activities at home with their children. For the next monthly consultation, the developmental pediatrician would assess if the improvements are happening as expected or not and accordingly decide the next set of goals.”
Devishobha: How is the online coaching for parents going so far?
Dr. Dalwai: I would say this is a most remarkable thing – we can coach the parent by demonstrating live video activities. The advantage is that the parent can do this many times at home. Plus, it provides a natural environment for the child, unlike the clinic, which only provides therapy for a couple of hours in an external, relatively artificial environment. Of course, this is besides the fact that the child or the adult do not need to travel, etc.
Devishobha: What is a good way to avoid the misdiagnosis of developmental delays in children?
Dr. Dalwai: When a child comes to us, we do a complete assessment by looking at the developmental spectrum of smaller domains of milestones. We assess the kids against a list of 700 milestones across 17 domains.
A simple example would be this: Most of us know that a child is expected to sit only after rolling over-it is a pre-requisite skill. However, to progress from rolling-over to sitting, the child needs more than just muscle strength. They need awareness about the body position, motor coordination, sensory input as to the touch from the ground, also the desire to view the surroundings from 6-7 inches higher from where you are lying down!
If you have to work on a child who has difficulty sitting up, you need to work on all these various aspects to get into sitting. A developmental pediatrician understands all of it and can rightly assess the required training in each of these sub-aspects of a skill. Each sub-skill may not be equally affected- thus, you need to chart where the child is on each sub-skill and design a program to enhance each subskill to the next level within that subskill. This has to be done repeatedly till the child masters the skill entirely. The targeted, detailed assessment coupled with holistic coaching makes a world of difference to families by enabling them instead of labeling the child and allowing the family to participate. Hence, this program is named as E-nable Parent Coaching Program®.
Watch Dr. Samir Dalwai from The New Horizons Child Development Centre speak at the World Early Years Summit 2021 on the ‘Identifying Early Intervention Needs For Appropriate Integration,’ along with 30 other amazing speakers! Catch the event free on March 23rd & 24th, 2021. Register here.
About Devishobha Chandramouli
Devishobha is the founder of Kidskintha – a global parenting and education collective, and the host of the global virtual conferences hosted on the platform, one of them hosted in collaboration with UNESCO. You can also find her voice on the Huffington Post, Mother.ly, Entrepreneur, LifeHack, TinyBuddha, Thought Catalog and many other publications.
Follow Devishobha Chandramouli on Twitter @kidskintha