Autism and the school admissions

It’s that phase in life when, after spending six, long, stable, well-supported years in one place, the time has come to relocate to different lands. This is one of those free-flowing posts -written because I want to just make sense of the situation. We all know change is inevitable and yet it’s not the easiest to embrace. I also know that it is this process that helps us all evolve. Being in the expat community for quite long now, we have seen families leaving, the nitty gritty of winding up and the excitement of the new place. So, what is different in our case- Well, to say the least we had to keep the offer on hold and find out first if the new lands could cater to my child’s needs. Is there a well-intentioned mainstream school ready to include my son? Are there qualified intervention services available in the city?

My son with learning needs goes to a regular school presently and he receives support/facilitation in class. Within my first few minutes of browsing the net, I found a very detailed description on one of the premier institutions offering “Learning Support services at various levels- one is to one support, small group support, in-class support”. The economics also worked so I was almost sure that my son will be given a spot. I mailed them the important reports and I received a mail which said they will not be able to accept my child. Quoting them “Although we have a learning support team, we do not have the specific requirements that your son requires.”

As a parent this would have been easier to accept and understand if they first met with my child virtually at least, had an interaction and gave me an understanding of what these specific requirements are, that they cannot cater to. This coming from a school with all the great infrastructure and a learning support team, it was quite a difficult one to comprehend. I got one more “sorry” email from another school and then I went quite numb for a day. I was back in 2016-2017 when my son was transitioning from preschool to the big school. We had faced so many “we regret to inform” and “sorry” until we found the perfect fit. I realised that my child has progressed immensely in the four years, but the education system is right there where it was!

I then went into expat forums and found a lesser-known school. Or rather a school probably known to the special needs and expat community. This school admits typical /regular kids without a test. They believe that every child has the right to education and hence will not be tested. The children with learning needs will first undergo a detailed assessment to see what level of support is needed. If mild needs, they are included in mainstream class with an assistant teacher dedicated to the child; if mild to moderate needs then they are given learning support in class and outside of it and for kids with severe conditions they provide special needs support. They allow for inclusion in the sense that a child will have the right to education amongst typical kids in the same regular class. Children in general learn by observing peers and through the social interactions. For my son, school is his happy place. The intention in inclusion exhibited by his present school has been the key to his progress. We want that to continue not only for his self-esteem and confidence but for his growth.

I think we need more months than just April dedicated to Autism Awareness. We have a long way to go to understand the needs of autistic children, understand they have a right to education and only if they are given this can it translate to their independence and success at jobs. Children on the spectrum can go on to have successful lives and the seeds for this must be sown early on in their lives. The Ministries of Education can incorporate best practices from countries like Denmark where inclusion in schools is a political priority and a clear goal for schools. There is an advisory body constituting of educational psychologists that assesses the child and communicates with the school and parent on the support level and services that should be provided. A social worker is assigned to ensure progress of the child. The public-school systems are evolved, providing good quality education to children. I am referencing some articles around this for further reading and for further awareness.



The other noteworthy point is, that in these countries, the parents are not stressed by the economics involved when the children are supported at the schools. The public-school systems do not charge exorbitant fees and the support provided is also within this. Parents of children with needs already need to pay for the specialised services like speech therapy, occupational therapy, etc outside the school hours. These services are very expensive and require good financial planning. Hence it is a relief that they are not burdened by the school fees. Expats will need to consider the first language used in these schools. In Denmark, the public schools can cater to your children provided they know Danish! This becomes quite tough for the foreign or expat population.

Most countries either don’t have laws in place or are still formulating laws around inclusion. In India, the RPWD Act (Right to Persons with Disabilities Act) came about in 2016. It defines inclusive education as “A system of education wherein students with and without disability learn together and the system of teaching and learning is suitably adapted to meet the learning needs of different types of students with disabilities.” However, the ground realities are quite different. Parents have had to decide to home-school their children despite getting admissions to schools because they have not received the quality they expected. Inclusion is seen merely as an Act to abide by, and the intention is lacking. Schools that do have the right ethos and intention have managed to put a system in place but these schools are few.

What is lacking everywhere is the existence of an advisory body that constitutes of psychologists, neurodevelopmental paediatricians, occupational therapists, and speech therapists who can assess children and give clear directives to schools on the level of support to be given to the child. This can help bring the much-needed consistency, uniformity, and accountability. The lack of clarity has allowed for loopholes that the school managements can use to their convenience.

It is imperative that there be a strong political will across countries to improve education systems as the truth is the number of children with learning needs is increasing and this area needs to be addressed. We are all global citizens now. People are on the move and they should be at ease to pick up opportunities that come their way and their children should be able to seamlessly transition between schools. I hope that I see light for my son. I hope he can go to the same regular school as his younger sibling, and they can together tide over every transition that is in store for them.


Beyond the 5 senses

One of the first lessons in kindergarten – the five senses- the sense of vision, hearing, smell, taste and touch. But did we ever go past that lesson, to see if there is more than just these five?

Yes, I hear you- The sixth sense. If someone were to compliment you saying “you have a good sixth sense” it means you seem to be more intuitive than others in general. You basically get things others don’t get as easily. But this sixth sense is actually just a phrase! The movie Sixth Sense by M Night Shyamalan just takes this phrase to another level altogether. I have no intention here to get into the theories around the phrase – ‘sixth sense’. Instead, I am going to introduce you to the idea that our body has 3 more senses that we were not taught, after that first kindergarten lesson!

Why talk about senses in a blog here? Well, sensory processing is a huge piece in the autism puzzle. To help a child with autism, it is important to understand:

how the child receives the above sensory information

what those sensations mean to the child

how the child reacts or behaves to these stimuli

The 5 senses we all know are environmental in nature- the ones that help us receive external stimuli (namely, what we see around us, what we hear, what we smell, what we taste, or the feeling when we touch something).

The 3 others are more internal to our body.It was only few years back I got to know about the vestibular and proprioceptive senses which are commonly discussed amongst Occupational therapists and the likes. I hope that you find the information on the same and my observations on it helpful. The eight sense – the interoceptive sense which I just came to know about also has a serious effect on how we function but is hardly talked about. However, research is on and I am excited to learn more as it affects self-regulation, another piece to fix in the autism puzzle. More on that in the later blogs.

Vestibular sense

This is the sense that allows us to maintain our balance during movements. There are parts in our inner ear which is responsible for this sense. The vestibular input or stimuli comes from any movement but mainly from the movement of our head. Often, we hear of people experiencing spinning, dizziness, or going off-balance or in some cases vertigo. This mostly happens when the inner ear is affected by ear-infections, stress or lack of sleep.

For children with ASD, who have impaired vestibular sense can either cause them to seek more and more vestibular input or avoid the vestibular input. While many infants need some rocking to fall asleep, I recall how my son needed to be rocked gently to sleep as a baby and continued to seek movement to sleep until almost 3 years. He would also swing for a good amount of time and while in the swing, spin himself clockwise and then anticlockwise. This looked very pointless to me and I wish I had known better then. These movements energise the child’s body and bring it to alert state.     We all grew up with games in our childhood that actually had “in-built” vestibular inputs. One that I can remember was holding crossed hands, and spinning till we were thrown off balance! We did it in more social settings but our sensory seeking kids tend to do some of these activities by themselves. The child who constantly rocks back and forth while doing a task, the child who paces back and forth while waiting are examples of children who are seeking this vestibular input to increase their alertness. The vestibular inputs can get our kids to be less restless and more focussed. However, one also needs to understand that too much spinning or too much bouncing or too much rocking could eventually lead to a “sensory shut-off” causing nausea or melt-downs and could take many hours to recover. A fun example to identify with this is the extreme case of vestibular stimulation- the roller-coaster ride while for many it results in sheer excitement, for others it may result in headaches or nausea or many hours to get back to feeling normal.

 Occupational therapy involving vestibular inputs also stimulates this sense and children tend to focus better after the sessions. During our stay in South Africa, we continued to find opportunities in places like Tree Top adventures, Bounce and Kids Gym where our son could explore climbing, navigate obstacles through a mix of stable and unstable surfaces with the additional challenge of heights. These opportunities gave better results than in a therapy room as we found that he was motivated when amongst kids his age doing what they do, feeling happy about what they do, and feeling safe enough to explore and stimulate their senses. With time I understood that impaired senses can also develop with time provided the child

  • Gets more exposure to using the sense
  • Feels safe and secure while doing the activities
  • Feels motivated to do activities

Proprioceptive sense

This is the sense that allows us to know where our different body parts are relative to each other- in other words this sense is all about body awareness, posture, self-regulation and alertness. If you were asked to put your ring finger on your nose, you can do it even with your eyes closed: it’s the senses in the muscles of your hand and joints in your fingers that does this for you. This sense comes in play when we sit in front of our computer to work; we tend to automatically align ourselves and our chair to the table we are sitting at.  This is the sense that makes you aware of where your body parts are and also helps you judge force and pressure. A very common activity we use this sense in is writing with a sketch pen, pencil or pen. We all know what pressure to apply within a few minutes of writing but this is not the case with kids who have poor proprioceptive sense. They wrap their fingers and hold the pencil so tight that their fingers tire out quickly while writing. The child who engages with his friends in pretend play and becomes rough or hurts his friend is often unable to understand how he landed up hurting his friend when he had absolutely no intention to do so. Also children love crashing to the floors, who want to run around silly may be found to have poor proprioceptive sense and will benefit if proprioceptive input is given to them.

The occupational therapy activities are also geared to engage this sense. We realised early on that just 30-40 min of OT twice a week, where in the therapist works on various challenges just for a few minutes each, may not be the best solution for our son. The proprioceptive sense is stimulated and developed through regular exercising, lifting weights, push ups and pull ups, giving deep pressure, jumping in the trampoline and other such rigorous activities that stimulate the receptors in the skin, joints and muscles. A child who needs to do an academic task, slumps in his seat, wants to rest the head on the table and seems to be sensory-seeking. This child could really benefit with some star jumps, pushing heavy furniture or deep pressure applied on his body. We found that a lot of our son’s initially sensory seeking behaviours like crashing to the floors between 3-5 years disappeared eventually. We attribute this to our persistence to engage him in weekly exercise sessions and daily animal crawl routines. More on this in my blog ‘The Core Issue’.

It is also important to know that the vestibular sense and proprioceptive sense work in conjunction in some of the activities. One such example is when we walk up and down the stairs or walk on hanging bridges. Here both the senses come into play. I have noticed that if my son were walking down a flight of stairs in an unfamiliar territory, he would want to hold the railings, slow down and his gaze is strictly on the steps. At 9 years we know this effort should not be as distinguishable but it is. He is also very anxious over hanging bridges but due to increased exposure the levels of anxiety have decreased.

Having said that, there are many of us who would never get onto unstable hanging bridges or into those crazy rides we see in the carnivals or fairs. We all have our fears and its either to do with how we perceive danger or we may just not be the adventurous types. That is not as much a concern especially if we know how to handle and react to these situations. In my observation, children on the spectrum seem to be unable to make sense of these sensory inputs, sometimes due to the lack of exposure to them and sometimes due to the other concerns they have. So, the behaviours and emotional responses that stems from these sensory processing issues can hinder their day-to-day activities and interactions with the world. As humans we are gifted with our ability to sense and make sense of the various sensations in and around us. We feel alive because of this. I firmly believe that every parent with children on the autism spectrum or with children having SPD (sensory processing disorder) should consider doing a bit of homework on these two senses and understand how it affects their child’s behaviours and interactions, in particular.   

A Cup Of Chai And A Perspective On Life…

This is a post by a mother with a child on the spectrum. I dont know Suja personally. But it really is a wonderful perspective.Suja…I love this post.

A Mom's Tryst With Autism

This incident happened about two years back. We were on a road-trip from Delhi to Nainital and enroutewe stopped to have chai at a small tea stall. While we had chai, the tea stall owner asked Gopan if Dhruv had any issues!

Gopan very candidly said yes; the tea stall owner sighed and said that his 12 year old daughter too had some issues!! He had taken her to many doctors, but sadly nothing had worked. She was going to school yet kept getting distracted and forgetting things a lot.

I heard him speak but said nothing as there was no way I could help him. I sensed his sadness and realised in that moment he was actually unburdening and connecting with Gopan, one parent to another.

I looked at Dhruv sitting peacefully on a chair and thought, yes, he has Autism but he is lucky we can provide…

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Intention in Inclusion

It’s been a while since I blogged. Just a lot going on in the head, as the new academic year for my kids began in August. We decided to opt for in-person school despite the Covid 19 concerns. Once we got used to the routines, I got myself thinking about the best ways to enable my son to get into a good steady pace for Grade 3. And amidst all this I knew if I do get to blog, I am going to definitely write about Inclusion.

Inclusion is a much talked about topic. Every one of us has an inherent need to be accepted, to fit in, feel wanted, to belong and not be left out. This is also the case with our children. The places that a child spends most of the time is home and school. It is therefore but natural for us to want that our child is accepted wholeheartedly by his teachers and peers at school.

While it is easier to cater to the needs of neurotypical children it’s quite a different ball game when a school takes upon the responsibility to be inclusive- which ideally means you accept responsibility to teach and nurture a child who is differently abled or has special needs. With responsibility, if there is true intention then the spirit of the child gets the much-needed boost. We found this intention in our child’s present school.

The background: When he was doing nursery in a preschool nearby, I thought of trying for admissions into the big school. However, after engaging with my child they informed me that they will not be able to support our child adequately in kindergarten. Their support facilities like Occupational and Speech therapy and Learning support team were all available only from Grade 1. The school advised me to think of a remedial environment which my child could benefit from and when he is ready to transition to mainstream (regular learning environment) they could consider our application again. However, we didn’t find enough options in the remedial setups for kindergarten age group. So, I decided to find options that could help my child assist him in his pre-school and at home. This is how we found the Applied Behaviour Analysis therapy. Within 6 months into therapy, my son had progressed from being in a shell to being interactive and with better fine motor skills.

One night I found the email trail from my last interactions with the school I wanted my child admitted in. With absolutely no optimism, I requested the same school to observe my child again and explained how with home sessions and school facilitation our child was coping much better. To my absolute surprise, the school agreed to re-evaluate the situation. The counsellor, who observed my child actually believed that with fair amount of facilitation there is a good chance our child could get the right kind of stimulation in this school due to the structure of their program. This was the counsellor’s vision. We are forever indebted. This school’s program required the child to engage with peers, in reading and writing workshops (not subjects) and was not really into the desk-chair-blackboard format. 

I absolutely loved this school when we got to see all the classrooms and facilities. It was just not like the other mainstream schools. Little did we know that there is more in store and we were only about to meet our angel. The kindergarten teacher was the “intention” personified. Her love, care and understanding for our child, along with the environment she cultivated in the classroom-of kindness and goodness helped our son forge ahead. As he moved to a higher grade, the number of angels in his life increased. He loves it at school and hates to miss even a single day. Just a few days back I had a meeting with the Grade 3 teachers and when the teacher listed out my child’s strengths, I realised that I need to give myself time to look at my child as an individual with many enjoyable traits. I felt blessed that my son was in good hands for most of the day.

A form of intervention:Considering the hours our child is at school including the bus travel, school is the biggest intervention that has helped him in more ways than one. Children learn so much from their social interactions. For a child on the spectrum who is mostly visual and need peers (to model for them), it becomes easier in a mainstream environment rather than in a remedial set up where the likelihood of learning from peers is quite inadequate. They learn the appropriate behaviours and responses by observing their classmates. My son’s rigidities to conform to sudden changes in schedules hardly ever surfaced at school and when it did it didn’t last long as he wanted to do everything just like his friends! The inappropriate responses and meltdowns just decreased with every passing year. This is testament of the fact that most children with learning differences and behavioural challenges can with adequate accommodations, find success in regular school.     

What are accommodations? The school took up the responsibility of our child and the teachers showered their best intentions. The actionable steps taken to help him thrive at school are the accommodations. I am listing a few for clarity. In kindergarten there was a stationary kit ready for the facilitator to grab and go with, to a room next door to work in, if my son had a meltdown. Our son was allowed to be facilitated. The facilitators gave him one-on-one support to complete his tasks. The teachers worked with the facilitators to make visuals and checklists so that his reliance on facilitators decreased. They gradually faded out of some sessions as he followed instructions and did tasks by himself. The school also helped create individualised learning plans for the year which involved assessing the child for the first month or two and then creating goals that the child should strive to achieve for the year. In Grade 1 for example, the goal for retelling a story was accommodated as allowing my son to sequence the pictures of the story in the correct order. In grade 1, his teacher gladly used an OT brush to rub his back with if he was fidgety. This helped him focus better. He was allowed to choose his reading spot that was least distracting. He could go for a run to get the silliness out! These were apart from the brain breaks and free choice that is applicable for all kids. Now in Grade 3, the learning support team is simply incredible and is pushing for complete independence. I can’t wait to see how this year turns out to be.

Flash back:I am almost certain that many of us cannot remember having seen a peer getting support of this nature during our school years and this is probably so because there weren’t as many cases of autism then and if there were learning differences weren’t actually noticed! Of course, the resultant behaviours were highlighted leading to eventual labelling of the child as a dull, slow child or an aggressive ill-mannered kid or a stubborn kid. If we did notice autistic children, they would be the ones at the higher end of the spectrum who looked odd,showed visible quirks or stims and went to a different school where all kids appeared to have issues and hence the word autism meant disability and sadness. Now there is greater knowledge of various learning differences and how there are kids on the spectrum who can be accommodated in typical school settings. They don’t have to always be sent to remedial or special needs schools. There is more in-depth knowledge of autism now and with schools trying to be inclusive, what is also required is –inclusion in the mindset of the larger community.

 As a parent, I have begun to realise that certain ‘accommodations’ need to be made at home, in school and other places for my child. Say for example -playdates, birthday parties, restaurants, airports, malls etc. Now I speak for mom’s with kids, who have more sensory and anxiety issues because of which they miss out on a lot. What can we as a larger community do for these parents and kids?

  1. Educate yourself about what autism is all about, so you can help your child be empathetic to the autistic peer.
  2. If you know one child on the spectrum you know only one child on the spectrum. This is because while two children have the mild autism diagnosis, they may turn out to be vastly different. Hence do not undermine the efforts of the caregivers. The less judgemental you are, the more you and your child will be open to understanding the autiustic person in question.
  3. If you intend to have the autistic child over for a playdate at your home, may be ask the parent how best the situation/transition can be made easy for the child. May be the first playdate includes the parents having to socialise too as the child feels secure enough to explore the new surroundings with his parents around. Maybe you have a familiar snack or fixation ready so the child feels at home. Everything is in the “intent”. I was very fortunate that I found good friends in moms to my son’s typical peers. I was open about my child’s needs and before I sent my child over, I requested for theirs to come over a couple of times. When the playdate concept was familiar, I sent him for a short while to his peer’s home. Now he is happily going to various friends’ homes and while I don’t tell them about his diagnosis, I tell them to let me know if they face any issues. Yes, a year back I would rather let the other mom know that my child is on the spectrum but we have come a long way since.  I just have to send along some gluten-casein free snack as that’s not usually available at most homes! Until now, its all been smooth and everyone finds him fun and friendly to have around.
  4. What could you do when you see a child lying on the floor screaming in a busy airport, with the mom standing there fazed? You could ask if you can be of help-get something from the shop on her behalf as she possibly couldn’t get to the store, herself? You definitely don’t want to talk to the child or address the child as the mom, probably is allowing the child to get through the meltdown and wouldn’t want strangers worsening the situation.  You definitely don’t want to judge her or advise her. If you didn’t have the time you could walk past and not stare. I remember how while waiting to board the plane in Delhi airport, I was finding it hard to keep my son from running away and a co-passenger came over and asked me does he have a mental problem. He was actually being polite to me by not using mad or insane! I must admit I was shocked to react then. Unfortunately there are people out there, who out of their curiosity say the most random things.
  5. Small gestures like allowing a parent to move forward in the billing queue because their child is unable to handle the waiting time, or giving some time to the child who is repeatedly running around a table in the restaurant, before you decide to talk to the caregivers, would make a world of difference.

If there is intent shown by all of us towards a child with needs, we can foster inclusion. I am my child’s advocate and I take this upon myself. However, if it was not me who was always seeking these accommodations and if it’s the larger community that says – Do you think this accommodation could help your child? Can we do this for you? I think inclusion just gets a whole new dimension.

Cleanliness redefined

Cleanliness is one of the first lessons of our life that our caregivers teach us. It is engrained that being clean is as essential as what food and water is for our bodies. As we grow, we may stumble upon concepts such as – having a clean mind and pure soul. There are spiritual gurus, various tools and apps out there to get us to do some soul searching and guide us to positivity. I believe that most of us are trying to be positive individuals and we are aware it is the need of the hour. With this we have touched 2 dimensions of cleanliness- external and spiritual. This post intends to create awareness around the third one which is -cleansing the body off the various toxins. is what this post is about. It is called Detoxification. In the past, for me the word detoxification meant green teas, lemon teas and saunas. I was oblivious of the effects of detoxification and its importance until the time I began to help my child. I realised or must I say I became conscious of the fact that there are toxins of all kinds that we are constantly exposed to. And during our time in this world our body and its amazing mechanisms take upon these exposures and works hard to keep us healthy.

What are these toxins and where are they? Some toxins like gases, vapours, mists, dust, vehicle exhaust are inhaled by us. The moment we open various detergents the bottles emanate vapours and gases constantly. Some even fall in the category of neurotoxins which means they can affect the brain. Its safest to keep the detergents in the part of your house that is least frequented. Also, it is best to use air-fresheners with caution. Buying unscented and fragrance-free options could help reduce the exposure in a small way. We consume some toxins like pesticides, fertilizers, glyphosate, chemicals from industrial waste when they find their way through our food and water. Processed food in itself has substances that have adverse effects on the body. When I see beautiful orchards along the freeways or highways, I can’t stop myself from thinking what the fruit on my plate was subjected to until it reaches my plate! Cosmetics like body lotions, creams and antiperspirants enter our body when absorbed by the skin. Soaps and shampoos too expose us to chemicals that aren’t always safe for the body. Then there is exposure to heavy metals like Mercury, Lead, Cadmium and Aluminium. These according to me are the big 4 to watch out for. Cadmium is high in vehicle exhaust and is used along with lead in coloured plastics and glassware. Also seen in the gold designs on the dinner sets. Aluminium leaches into our food through the cookware and foils used. Most vaccines other than the live virus ones have Aluminium in them as it is used as an adjuvant to increase effectiveness of the vaccines. Actually, since Aluminium is so abundant it is but natural that it enters us. Mercury enters our bodies through amalgam fillings and consumption of certain fish that have accumulated mercury. There are other heavy metals too and it is not possible to avoid all of them at all times. Another set of toxins are the biotoxins. Biotoxins are toxins in our body that are produced by bacteria and viruses. If we have constant exposure to mold in the places we frequent we inhale mycotoxins that also fall into this category.

How does the body handle toxins?The body uses its excretory systems to remove the toxins on a regular basis through sweat, urine and stools. The liver plays a vital role in detoxification. It has a substance called glutathione which is an antioxidant. While glutathione is present in all cells, it is more in the liver. Glutathione transforms the toxins into water soluble form which facilitates excretion through the urine. By drinking lots of water and having good fibre in our diet we support the excretory systems. There is also the theory that a pregnant mother tends to pass on most of the toxins to her first child in the womb. And this continues while breast-feeding the child as the body has found another route to excrete toxins! In the case of biotoxins our body tries to fight it off with inflammatory responses. Our bodies therefore have genes that trigger the proper functioning of the detoxification systems in our bodies.

Impaired Detoxification.  How does the information above connect with Autism Spectrum Disorder? When the detoxification process is impaired, that is when the glutathione is not being produced in sufficient amounts by the body, not only are the cells of the body under oxidative stress but the liver isn’t getting enough aid to flush out the toxins. Over time toxins start accumulating in kidneys, liver, lungs, brain and lymphatic system. This study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4017810/ ascertains how impaired detoxification can be one of the underlying factors in Autism Spectrum Disorders. Even other chronic illnesses stem out of impaired detox system in our bodies. From our son’s OAT (Organic Acids Test) report, we saw that in the Indicators for Detoxification section all the markers were in red. This meant that our child’s body wasn’t producing enough glutathione. We actually took time to get started on the treatment for this. I did hear about some really brave moms getting their kids to take intravenous glutathione IV shots but I needed guidance and didn’t want to take any invasive approach. Just wasn’t brave enough perhaps.

 Interventions Used. Apart from the glutathione IV shots, other invasive means that uses Chelation therapy involves injecting certain substances (EDTA) into the blood stream or it can be taken orally like DMSA and these bind with the heavy metals and is flushed out in the urine. In my humble opinion, I would never go for invasive chelation therapy options; they are too invasive and can do more than what they are meant to do.

Binders and Nutritional supplements While I was looking for non-invasive healing options for my child I found a holistic practitioner, Luminara Serder from USA (https://www.autismtransformed.com/services/) who was into an energy and informational healing protocol called the NMT-Neuro Modulation Technique. The protocol involved a step by step approach that made things very clear for me. It was mostly natural supplementation. Simplistically speaking the protocol used NMT to find out which areas/pathways to heal while the body gets supplements and binders in phases. There were homeopathic drainage remedies to support the various organs like liver, kidney, blood, gall bladder, spleen, lungs and lymph. We supplemented our son with nutritional supplements and binders like activated charcoal. These binders are substances that bind heavy metals and get excreted through stools. These need to be taken with a gap of at least an hour or two from food or nutritional supplements as they bind with metals and minerals without discriminating. There are products to help remove Aluminium. Selenium and broccoli sprout were added in later stages of the protocol. These help increase the glutathione production in the body when taken in right quantities. We have moved on to some binders from a company called Cell Core which work very differently from the usual binders like charcoal. These helps bind and remove the biotoxins, heavy metals and the environmental toxins. Over and above, they restore the cell functions. It is not an easy path to take. Most supplements have only dosages instructed for adults and is not really recommended for your kids by the physicians.  But we need to start somewhere. We have seen slow and steady progress. This is because removing toxins from inside the affected cells takes time.  

Footbath Cleanse To further support the detoxification pathways, we added AMD’s IonCleanse Footbath into our son’s weekly schedule. It’s a tap water footbath with an electrode array placed in it. The child has to just place the feet in the water. While it is not clear if the toxins may be pulled into the water from the soles of the feet, it has been seen that the body finds it easier to flush out toxins through the excretory systems after the cleanse. You will get conflicting views if you were to google. I first joined the Facebook group “IonCleanse by AMD for ASD” and when I felt I had enough reason to believe this could help my child we decided to buy it. Click here to view the presentation by a mom to an autistic child and who is a doctor herself https://m.youtube.com/watch?v=R2uM5GZiBfY&t=2059&feature=youtu.be. Here is the link to the study done by the thinking moms revolution group. https://thinkingmomsrevolution.com/wp-content/uploads/2016/02/TMR-Study-2-Whitepaper-ATEC-Changes-with-the-IonCleanse-by-AMD.pdf It was not easy for us to believe an expensive product but it comes with a 60-day, 100% money back guarantee and we thought- why not. Within weeks of using the Ion Cleanse we saw a drastic decrease in “silly” behaviours.  My son started at 20 mins and now he keeps his feet in the footbath for 45 min. He has never refused it and I believe he knows it helps him feel better.

Some important points:

  • Detoxification should be one of the first steps after or alongside the diet changes. In our case our son was already on a low-oxalate GFCF diet details of which are in the blog The Autism Diet .
  • Before a treatment plan, we need to ensure the child is in the habit of drinking lot of water and is not constipated. This is essential to excrete the toxins which are mobilised and bound by the binders
  • To start with supplementation if your child can swallow pills, it will help. Fortunately, my son had learnt to swallow pills with the help of his ABA therapists so the process was fairly stress-free. If this is not the case some of it would have to be mixed with food or water

We continue to use the supplementation and footbath. We intend to eventually bring it down to a maintenance regimen as exposure to toxins will always be there and some amount of regular detox is essential. I am not certain what impairs the detox systems in our kids but I do know that this causes the cells to be under stress. Move this roadblock and their body’s inherent healing powers will come into play. They will respond much better to the developmental interventions you already have in place. Over this last year and half as we helped our son detox, we saw him become more aware of the environment, there was more spontaneous speech and fixations were more manageable.We could not have done these treatments without the support and guidance from our holistic practitioner, Ms Luminara Serder. I wish every parent gets a guide who can steer them forward. I signoff with this note- For our children on the spectrum and for our own health, lets redefine cleanliness and bring in mindful choices into our lives. Let us not burden our bodies anymore rather let us help it detox.

Catch it early

How early should an early diagnosis of Autism be? Is there hope if it’s a late diagnosis? Once you have a diagnosis -late or early- the mix of feelings usually are the same – Feeling lost with all the innumerable questions, feeling guilty about all those things that happened in the past, regret for not having caught on to things early on and profound sadness.

When we are a first-time parent, we just enjoy the bundle of joy. Our world revolves around this precious life and we are looking for various new things that the baby is learning to do. We don’t actually think about what our baby isn’t doing! But it is a very different experience when we are parenting the second time round. We constantly compare and wonder why the child isn’t doing certain things that the older one did. So basically, the first time round you don’t have a reference point.

Babies grow so quickly. Every month in the first year is an event in itself. Every little milestone is actually an indication of growth and development. The time when your baby grasps your finger and doesn’t seem to let go is a very emotional moment but we don’t really understand that this is actually a reflex which has to develop further and integrate over time. Integration in this example means to grasp an object or the caregiver’s finger when the baby wants to do it and let go of it when not required. This is just one of the many developments that happen in that little body. I don’t think any new parent is aware of all this.  We just know the baby should crawl in some months’ time, should walk by 1 + year, and talk by 2+ years of age. And if they don’t, we are told by people around that we should just give the child a little more time. After all every child is different! Off course, if issues are more evident like weird repetitive actions, head banging or hitting we are more likely to be at the paediatrician’s office looking for answers. The problem is, if this is not the case and the challenges aren’t as distinguishable.

Based on our experience, these are learnings that we would like to share.

  • Parental Instincts must rule. We now know that it’s a good idea to just go with our own instincts. When we used to share our experiences, people around us would say “It’s going to be okay. He will grow out of it” or “He is too small, just give him some time” or “Don’t google. You are over-thinking” or “All children are like that”.  When in doubt its best to consult the paediatrician and rather than being doubtful be firm about your apprehensions. Try to ensure your child has the same paediatrician for all the early years. We were in Nigeria and didn’t have a paediatrician for our child. We mostly visited a GP for his ailments and vaccines. We didn’t go beyond the medical services that were available and find a paediatrician.  On one vaccination visit while in India, I remember how unsure I was when I told the doctor that I didn’t understand why my son doesn’t talk when at his playgroup, why he talks so little and the doctor said it’s probably just his personality. My child was 4, and I had so much trouble getting him to wait for our turn with the doc but when inside he was very happy to be compliant. He also said a bye to the doctor and the doctor said to me, he looks just fine. It is important to take your instincts seriously and to have a doctor who has been assessing your child through the early years; a random visit is not going to give the paediatrician any clear indications. It is also best to use the M-CHAT or Modified checklist for Autism in Toddlers  and approach a developmental paediatrician if you have any concerns.
  • Milestone tracking. Best to track the milestones and be on top of it. The Centres for Disease Control and Prevention in United States has a comprehensive list of milestones that we can keep track of. https://www.cdc.gov/ncbddd/actearly/milestones/index.html. Your paediatrician too will be able to provide the list. Ensure you use it as a reference but not something to stress about.
  • Earlier the better. For kids as young as 18 months to 3 years depending on case to case basis doctors don’t give a diagnosis early on. They may in some cases be able to point out development delays and hint the word “autism” to the parents. The parents can with proper guidance reach out to experts. They can quickly do the required interventions like Applied Behavioural Therapy, play therapy or speech therapy for a child who is non-verbal or minimally verbal. Occupational therapy could be started for a child who has sensory processing issues. Food sensitivities and immune issues can be tested for and diets can be modified early on Without a diagnosis but just with clear pointers, parents can get started on bridging the gaps in development. If we set out to do the interventions early on, in some cases if there is a diagnosis at 18 months it may not hold good by the time the child is ready for school. In other cases where there is a likelihood of an ASD diagnosis, with early intervention you may just be lucky to prevent it. The gentleman Raun K Kaufman (https://autismbreakthrough.com/) is just one of the many who have recovered from the ASD diagnosis.  For more hope and inspiration, you can look up the TACA website. https://tacanow.org/category/family-stories/recovered-from-autism/. An early diagnosis is effective only if it results in early effective interventions. These interventions should manage and treat autism.
  • Acceptance is key. In India the teachers in the playgroup didn’t have concerns but in South Africa, the school we enrolled our child into picked on our son’s development very quickly. However, we were just not able to accept it quickly enough. Being in denial doesn’t help at all.
  • The search. In some countries to find good quality special needs therapies is challenging. Registering with parent groups for autism can be one way of finding information on resources. For information on therapies and qualified personnel in your area, connecting with other parents with similar challenges will be the best. Finding experts to guide you is another challenge. There is help out there in the form of naturopaths, homeopaths or holistic practitioners. It is important to be organised about all the interventions and well planned in your search. You do not want to take on more than what you can handle.
  • Better late than never. Our son was 5 years when we realised, he had developmental delays. While the tantrums didn’t look easy to handle by this time, other developmental delays were subtle. We were also slow in getting started on the effective interventions as the actual diagnosis came in by age 6. We regretted that we may have lost some crucial years because it is true that the human mind and bodies are very malleable in the early years. The greatest growth and changes can be seen with interventions when they are applied early on. So, is that it? Will we not be able to recover our child? There is increasing research in areas such as neurogenesis, brain plasticity and the gut-brain connection. There are also articles on how homeopathy has been able to deal with autism symptoms. I believe that given the right interventions it is possible to be off the spectrum. It may take longer because it is a late diagnosis. Someday, I hope to post a blog that reads-” The Diagnosis is finally Lost”!

The most ideal scenario would be to catch it early and get on the recovery path quickly. However, despite the late diagnosis our son has made tremendous progress.  The recovery journey is hard-work but that’s a lot better compared to the other option -which is to live with the autism symptoms for life. I believe that the Autism Spectrum Diagnosis is a warning and our reaction to it can determine if it is here to stay with our child or not. Don’t let the diagnosis limit you or define your child. God forbid, if an early warning comes your way, be thankful -earlier the better and have your fighting gear on!  

The Visual Learner

Couple of days back I was looking at the instruction manual for a new intervention that we started for our son and I was trying to be very careful as I was handling the expensive device. Mid way through the process I realised I was hardly reading the text and relying so much on the pictures – how the amplifying unit should be charged, and what cable must connect to which point etc.

Difficulty transitioning. I was reminded of the early days when I photographed my child doing things in the daily routine, took prints and laminated them. Then I would sequence them and hang them up as morning routine and evening routine. There was a sequence of pictures for brushing as well. I even had pictures on the bathroom door, to remind him to shut the door when he entered the bathroom. You may think I got tired of telling him what to do or not to do, so I found a way out to get things done. No, I wasn’t tired. Yes, I definitely got things done! It seems so strange that every morning you wake up your child and he just doesn’t seem to understand that he needs to go through his bathroom routines and then get dressed, eat and leave for school. Being sleepy, being lazy, not wanting to go to school, giving excuses for not being able to wake up are what kids would do normally. Frustrating but at least I could identify with those. However, this wasn’t like that. And during brushing, he didn’t seem to remember how to get through with it despite it being the nth time. In the mornings, for some reason there is always less time and our tolerance levels are way lower. The struggle to transition had become just another part of our morning routine. Then ABA therapy entered our lives and I was told that most autistic kids are visual learners.  The first visuals I made were for the morning routine and the teeth brushing sequence. He would look at each step and copy the same. I think for the first few weeks every morning and night, I would stand next to him while he is brushing and he would see the visuals and when done feel so happy. It was slow but we were happy that it was smooth and there were no meltdowns.  I was already thinking about how I would have to carry these visuals everywhere I went! And then a month or two went by and we were having guests at home so I took off the visuals for that evening. Next morning, he was brushing his teeth and I realised I had forgotten to put the visual back on. He did all that he was supposed to do perfectly. I only realised then that he wasn’t using these visual routines anymore. He was actually relying on his own memory and skills. We get so caught up with new problems we don’t see the older ones getting resolved!

Countering Anxiety. Another big one which we managed to resolve was our child’s excitement every time we were boarding an aeroplane. While it is a good thing to be excited, for us it turned into a worrisome start   to (and end of) an otherwise good holiday. From when he was around 2 until now, this extreme desire to be on the plane has not changed. From the time we are near the airport, it is like we have a bomb ready to explode. He finds it difficult to queue up to check-in the baggage. At the immigration/emigration checks he would have tears rolling down as he can’t wait. During security clearance he found it difficult to part with his toy aeroplane and the meltdown starts. The excitement has now changed into high level of anxiety. And then it’s impossible to sit in a café or buy a beverage as he won’t allow it. We just prayed that the flight wouldn’t be delayed. We tried everything from favourite rhymes to videos but they could only distract him for a few minutes. We would walk pretending that we haven’t reached our boarding gates while he stayed distracted by the aeroplanes taking off or landing. Every flight from age 2-5 has been so stressful. The irony is, on the flight when all other kids are restless, ours is the best. On one occasion I had a couple sitting close to us compliment us on how lovely our boy was in the flight. They definitely didn’t see him at the time of boarding and I hope they didn’t see him at the baggage collection. We always had to deal with another meltdown at the conveyor belts as he would want to run back to board the plane we just got off! From the fifth year, for all our air travels I had a laminated visual checklist. I was so proud of myself after seeing how effective it was. It had images from google of every step of the entire airport routine until we landed and got into another taxi. Then a picture of the place we are visiting followed by the next flight back home. He got to check the box every time we finished a step and this lowered his anxiety. Of course, Rome wasn’t built in a day, and our problems too took time to resolve but what mattered to us was we saw a marked decrease in his anxiety with every travel me made. I reused the same checklist until he turned 7 after which I stopped. For all travels in the last one year or more he has been very comfortable with the queues and wait times.

Removing dependencies. At school, the facilitators noticed that after every step, in readers workshop, my son would approach his teacher to inform her he finished the particular instruction and would ask her what he needed to do next. Even if she told him what the next couple of steps were, he would still go back after each step. So, she put in place a checklist of the instructions/ steps and a stamp size laminated picture of our son. Every time my son finished a step in the process, he would put his picture against the next step indicating he is working on that step and on completion he moved the pic to the next step and so on. He no longer needed to check with the teacher at each stage. This helped him do the entire task independently. Overtime it also gives a sense of awareness that he doesn’t need help all the time and can attempt tasks on his own. This is very important because children who are facilitated in class room environments tend to be habituated or feel dependent on their facilitators. Having checklists like these, helps remove unnecessary dependencies.   

Evoking response. Social Stories are quite an important tool for children with ASD. These are basically visual stories custom made to the child’s needs. A story a day is definitely better than a monotonous lecture every day! We had many written for our son. From helping him get rid of his habit of squeezing his fingers, to staying on track in music sessions at school to seeking help if someone is mean or bullying him, we outlined many visual stories and read it out regularly to him so we can instil a certain response. Often social stories end with what the child’s response should be. And a visual story has the best effect. Pictures from the child’s own setting is preferred so the child can connect easily to the story.

Tips and tools. Visual tools like visual reminders, visual routines, visual checklists, visual schedules can really help your child deal with stress and anxiety due to new tasks, new places, or new people and also help in transitioning difficulties. These visuals should be placed or hung on the wall at the child’s eye level.  To give a sense of control and accomplishment, you can have your child use a white board marker to check the box next to the activity when it is completed. I would say that very often we need to be prepared to let go of the aesthetics of the house for the benefit of the child! When we started exercise routines with our son, I had pictures of exercises laminated and we would just re-arrange the pictures for our sessions as it wasn’t always a fixed routine. While Velcro is often used, we found Prestik (a reusable putty like adhesive) which helped put these visual aids in play. It’s always a good idea to make aids that are reusable. The more effortless it is, the more we are inclined to use it, thereby evoking better responses from our children. There is also an app called ASD Tools which really helped our son get through changing routines and tasks with ease. It allows to click pictures and you can make a sequence of tasks that need to be completed. Your child then gets a visual schedule (First-Then-Next) and you have the option of introducing the picture of the reward at the end of the task. For the child the processing of instruction is a lot simpler and you get to make the visual on the go with this app based on the needs of your child.

It is easy for us to assume that a task is simple enough for our child. But it is possibly not the case for our child on the spectrum. It is probably more or as difficult as it would be for you to install something the first time round without a manual. It is still not an apple to apple comparison as your neuro-typical skills help you manage the scenario but that’s not the case with the ASD child. Why limit the power of visuals to just the school or ABA sessions? Why not use it to tackle situations at home and see how it can empower you and your child.

The Core Issue

We all know and use the word “core” very easily in different contexts and the oxford dictionary gives us many definitions for this word; nevertheless, I want to put two of them out here as is.    1.The muscles of the torso, especially the lower back and abdominal area, which assist in the maintenance of good posture, balance, etc.  2.The part of something that is central to its existence or character.   While both these definitions are different usages of the word core; I want to say that by building our son’s core muscles we helped elevate his quality of existence! The core strength literally proved to be beneficial in building his character. Following post is how it all began….

OT Assessment. In the first assessment done by the Occupational Therapist, we saw that our son was developmentally affected in many areas. The language in the report was so new to us. Apart from low postural muscle tone and poor shoulder stability he had sensory processing disorder (SPD), which meant that he got overwhelmed if there was too much information for the various senses to process. He had an impaired proprioceptive sense as in, he isn’t aware of his body relatively speaking; example- he couldn’t with closed eyes use his left hand to touch his right knee. He had bilateral integration issues and he couldn’t cross the midline which meant that the left and right hemispheres of the brain were not coordinating effectively and he had poor motor planning or dyspraxia.

What this assessment meant. In our son’s case, we received concerns on fine motor skills being very poor; way below peer-level. Picture this, a child of 4 years trying to use a pencil or crayon to trace a dotted curvy line. His shoulder and wrist are not stable so his attempt looks like a hair that’s fallen on the paper! However, he notices that his peer next to him is having thick lines on his work and is quicker than him. The next time the task comes to him what do you think will be his response? A young child isn’t going to talk about his problems, instead he or she is just going to try every trick in his little kitty to escape- crying, tantrum, running away, and in some cases may have a meltdown. There is a good chance he will not pick up the pencil, or he will wait to be supported. The teacher or parent may consider this as being stubborn, because if they just put their hand on his he writes the letters! Until we saw the OT’s report, we didn’t know that his shoulder muscles were affected. By placing our hand on our child’s hand, we actually give support to muscles that are lacking strength and stability. We also received feedback that he was very distracted and the teacher noticed he was very fidgety. Sometimes he would attract attention by making funny voices or shouting and would end up getting the naughty chair (timeout). All this because he can’t sit upright due to poor postural tone. Bilateral integration and Midline crossing issues come into play when the child has to use both left and right sides of the body like in scissor work, bead work, tying shoe laces. Often if a child isn’t working hard enough or doesn’t seem inclined to do these activities before judging their behaviour, it’s best to check on these underlying factors.

Information is everything– During the 2018 Autism summit, there was an interview with David S. Geslak, the founder of Exercise Buddy http://www.exercisebuddy.com/.He explained that exercise does wonderful things for children on the spectrum. It has been made into an Evidence-Based-Practice that helps autistic children and he had a free 10-day access to the videos on how to execute the exercises. We felt there was so much to be done and from our understanding of the OT activities we decided that we will get our son into an exercise regimen incorporating animal crawls and build muscle strength. We hoped that it will address some of the concerns like fine motor skills by building stability around his shoulder joints and attentiveness by building core stability as it would able him to sit upright in class for longer durations or get through ABA(Applied Behaviour Analysis) therapy sessions with more ease.We understood that physical inhibitions that are not so evident can have behavioural implications.I feel a sense of guilt that I didn’t catch these pointers early on. It’s not just early diagnosis that’s the key it’s also how we understand the diagnosis and what we can do about it, that matters the most.

Exercising our way through. When we started out, we didn’t have gyms that catered to kids. There were group yoga classes and group karate sessions but we needed more one-on-one type intensive sessions. I consider our son’s exercise regimen as not just a practise but as an intervention.  As first steps, we got monkey bars and a trampoline installed in our lawn. We requested my husband’s gym trainer to help us with our child and despite being a trainer for adults he obliged us. My son did 40 min sessions for about two times a week and we saw gradual gains in his core stability. Another important point is that, we had already begun on ABA, GFCF diet and homeopathy before starting on making exercises as part of our son’s routine. It wasn’t a conscious decision but in retrospect it couldn’t have been a better sequence of events. He wasn’t as sick as he used to be before the GFCF diet so we could get him to exert. We got our son’s compliance through the use of ABA techniques. We used visuals to explain exercises so that he transitioned well and was not irritated by too many instructions. In the beginning, most exercises were tough for him and we had to use many fun elements and games to get through them. We then indulged him with tennis, swimming and horse riding. When the kids’ gym opened, he was instantly a member there. Since he had Mon-Fri packed with school and ABA sessions, we had to pack all the exercise regimen into the weekend. This clearly meant more commitment from our side as parents. Then recently we restarted his one-on-one exercise routines again with the help of  the exercise specialist at ‘My World Ahead’ https://www.myworldahead.co.za/services/. What I like about this program is, it is very specific to skills development, and mostly intended for children on the spectrum. The program looks at strengthening his core muscles, increasing stability, endurance, balance, coordination and response times. Even with the Covid situation this is one aspect we haven’t given up on. We do zoom sessions and we participate with our son!

Did we achieve what we set out to do? Yes, indeed and more! Exercising is in general good for the moods. It releases endorphins which help relieve stress and pain. Brain chemicals like dopamine and serotonin are also released which help in the sleep cycles. Our son was sleeping better and sleeping through. We noticed he could focus better after the exercise routines. He does 3-hour ABA sessions without any behavioural issues. We could never have imagined he will sit on the same seat and work for so long in a Zoom session. I have absolutely no involvement and he takes minimal breaks. His confidence in ball skills has increased. His balance, fine and gross motor skills are all in place. His love for hiking is what motivates us to try the difficult hikes. He never complains of being tired and feels a sense of accomplishment when he finishes the hike. He is a confident swimmer when compared to when he started. In the 800m end of year running event at school, he showed his stamina and confidence by being amongst the first three in the entire Grade 1 to complete the run. He knows he can write and is quick at it too so he persists despite his inability to imagine and articulate. His handwriting needs improvement but he can write 2- 3 pages without getting tired. Since the motor skills are better, he can go about his work independently. Before he would need help to fill water from the heavy jug into his narrow water bottle, now he did rather do it himself. Sometimes we find him trying out some stunts on the bicycle and we see stability, control and coordination in play. We know we have come a long way. These may be little achievements but he is proud of them.

Self-esteem goes a long way for anyone and more so for a child on the spectrum. Getting through a normal day is a lot of work. Social interactions are too heavy to handle. We have with exercise managed to raise our son’s self-esteem- the wind below his wings. Rather than be anxious and insecure, this inherent strength helps him stay motivated and happy.

The second plunge

The decision to take the plunge into motherhood or may I say parenthood is usually a very conscious one. Sometimes you know you are ready for it, sometimes you don’t but you still go for it, sometimes it all happens by accident! Readiness of the mind to step into a new responsible role, where you are in your relationship, your career, and the economics are often important factors in this decision-making process.

The turning point. Oh! I missed one important factor- Encouraging relatives!! When I was told by relatives to have my second child, I was always hesitant and I didn’t feel ready. I felt I was struggling as a mother. We had not received any diagnosis and frankly we felt our son just needed more time. I feared that if it is some dominant gene playing out, I may have to go through the grind of tantrums and outburst all over again with my second. However during this period when I was in India my cousin visited with her 4-month baby who was just trying to crawl. My son was 3+ years then and he was sitting a bit away, pushing his favorite little Lightning McQueen towards the little baby and excitedly talking. He even walked right beside me very concerned, while I was consoling the baby. Those moments are still so vivid; his excitement and warmth were something I just couldn’t stop noticing. At that moment I felt I was ready to go through the grind all over again. The expressions of care and concern I saw was not something I had witnessed before. I knew then he would be an amazing brother.

The albatross. After reading my post the- Atypical Calling, I got messages from mothers who had children on the spectrum tell me that they are not finding it easy to take the plunge, second time round. It is too scary; too risky. If it is in the genes; it will show up again! Even if we try and be as positive as possible, the fact that we have to constantly be there emotionally and time-wise for our child with ASD, just makes it a challenging decision. How can we divide our time and energies without feeling guilty all the time? In my case, it was pure luck that I didn’t have to be at such crossroads. I was just into the pregnancy when we recieved the report from OT and eventually the autism diagnosis. The second plunge was done! What followed was quite atypical. I used to google “what causes autism?” rather than do a recap on what to expect in the trimesters! From nourishing food to supplements to keeping away from EMF radiation as much as possible; I tried my best to do everything right. I tried to stay away from everything that would otherwise stress me out. I didn’t go to my son’s Occupational Therapist and I read the assessment report in bits! It was during that time that I actually offloaded my first child and his needs to my husband. At the time our son used to have an average of two tantrums a day and as the pregnancy progressed it wasn’t easy to be near him with all the kicking and hitting. The possible genetic predisposition to autism was like an albatross around my neck. The burden of my elder son’s diagnosis only became more after the birth of my second child. Every milestone of my second son was being tracked. To be sure I didn’t miss anything I got him enrolled into playgroup at 18 months and constantly asked teachers about his development. Though I felt guilty, I enrolled him into an after-school-activity that used all occupational therapy kind of activities and I tracked his progress with the instructor there. We kept him dairy free and gluten free by almost 80% until he was 3 years of age. We gave him all the vaccines but didn’t want to take any chances with the MMR. Whether reports were true or not about MMR vaccine injury we decided to delay this vaccine until he crossed 3 years of age. He will be 4 soon and by the grace of God, is very neuro-typical. I feel a lot lighter now-no burden!

The connect. My elder son has been a wonderful brother right from the moment he had his sibling in his arms. He loves his little brother and finds his anchor in him. He is amazed by his litle brother constantly exploring, questioning, cooking up stories, and wanting to try every food he sees! The presence of his sibling has helped him in more ways than I could imagine. For children on the spectrum lying, strategizing is not as natural as it is for their neuro-typical peers. When the younger one lies to get away with his prank, it is an absolute revelation for the elder one! Understanding social cues and responding to them is another huge issue for my son and we now have enough oppurtunities to expose him with! The birth of our second child was an intervention in itself; I think the best intervention of all and we feel blessed.

Yes, it is definitely not the easiest plunge and the albatross will hang too. You don’t need the encouraging relative nor the skepticism; you only need your instincts to rule you.                                                                       

The Autism Diet

Really? Is there any such thing as an Autism diet? It would be ideal to have a prescribed diet and   recipes for our little sensory and picky eaters. But, as I keep saying in most of my posts, autism spectrum disorder is as broad as the number of children with the diagnosis! So, the reality is there is no one-size-fits-all diet that can take this diagnosis away. However, there is definitely a lot that you can do by just changing up things in the present set of foods that your child on the spectrum is consuming and you will not be able to believe the kind of changes you may see. As always, I will begin with our own example. If you have read my post on Managing Vs Treating Autism, you are already thinking of Autism as a medical illness with neurological and developmental implications and not as a mental illness with nothing else to do. I hope that the post has been a good starting point for you to understand that treating autism is as important as managing it with speech, Occupational or ABA therapies.

What is gluten and casein? We started with treating our child with an intervention which is as non-invasive as it can get, that is the GFCF Diet (Gluten free and Casein free)!! Gluten is one of the proteins in wheat and Casein is one of the proteins in dairy that is cow’s, goat’s or any other dairy milk and milk products. If you research you will read that these proteins are broken down into peptides by our stomach and then these peptides should ideally be broken down into amino acids by our small intestines. These amino acids get absorbed into our blood which then nourishes our bodies. So, gluten and casein are good stuff. However, in some bodies like our kids’ with ASD, this whole digestive process for these two proteins is messed up! They seem to have something known as the leaky-gut syndrome. Gut being the intestines in our body. The small intestines seem to allow these peptides to move into the bloodstream without being broken down into amino acids. And these peptides in the bloodstream make the children react and behave differently. Please note that not all paediatricians will tell you this as this is still in theory or taken as a hypothesis. It takes years to heal the gut lining. We made the shift to a gluten free diet after being extremely hesitant and after pondering over it for almost a year. In that year we only did the ABA or Applied Behavioural Analysis Therapy. I would say that we only managed the Autism and couldn’t get started on any other intervention. I was asked by the ABA supervisor if my son had food sensitivities and she mentioned that his dark circles, redness of eyes and constantly having a stuffy nose could be indicators. Since we had just moved into Johannesburg, I assumed these were environment allergies and was not aware of food sensitivities. He was on a paediatric antihistamine to manage the symptoms.I spent the year absorbing all the information from the DAN, Defeat Autism Now, Dr Woellers Website and then sending our child’s blood, stool and urine samples to the Great Plains Laboratory in USA. We did the Organic Acids Test(OAT), the Metals Hair Test, Comprehensive Stool Analysis and the IGG Food Allergy Test. There are more on the Great Plains Laboratory website, but these were enough to get us started.

The love and cravings for gluten and casein Until the reports came, I was just not prepared to change my child’s diet. He loved Nutella sandwiches, pasta, pizzas and Indian rotis (Indian bread). He would gulp down a whole glass of plain milk with nothing added to it and always made sure he reminded me to give him a portion of cheese every day. He is a very picky eater, and his foods have to be of certain textures or more specifically not a mix of textures! With regards to beverages he only had plain water, strawberry milk shake and plain milk. We would try everything from juices to chocolate milk to variants of milkshakes and have only tantrums and gagging so we didn’t force him. I mostly pressure-cooked vegies and it was blended into rice or mashed into roti rolls. The recipes on Dr Woellers’ website were super healthy, gluten and casein free recipes and I just couldn’t see my son eating any of it.

Implementing the diet..I was hoping to get off the hook if the lab results showed a negative on food sensitivities to gluten and casein. But that was not to be! The graph was clearly off limits. He tested very high on gluten and a little lesser than that on cow’s milk. He tested high on oxalates; he was sensitive to eggs as well. (There was other stuff which needed to be addressed from the other reports but we needed an expert for those aspects.) To us this meant that all of his favourite foods were to be removed. We didn’t have the heart so we decided to do it in phases. We first targeted to being GF i.e. gluten free while alongside we reduced consumption of dairy products. We are now 100% gluten free and it was much easier than I thought. We got gluten free all-purpose flour to make our own cakes, pancakes and cookies, we had gluten free ‘atta’ to make Indian breads, we found gluten free pasta and pizza joints that served GF pizzas. Being from the southern part of India, where rice and lentils are staples, it was easy for me to get back to native foods and slowly we got my son to take a liking to them. Foods like idli and dosa made from fermented rice and batter replaced bread and butter! There was a time when we were going steady with the gluten free diet and on a visit to India, we indulged him with butter naan and butter chicken a favourite combination, for two consecutive lunches and he got sick. He was all stuffy nosed and teary-eyed, and from then on there was no looking back. We never lapsed. There was no room for weakness. We started to teach him what foods he could have and what were gluten free. At school if there is a class celebration, I am informed by the teacher so I can send an extra gluten free cupcake or a favourite gluten free snack that he can enjoy with his peers while they have their goodies. He is now in a position to ask if the food he is being offered is gluten free or not.

The results Around the same time when the reports arrived, our son had a bad upper respiratory tract infection and the entire area was inflamed, before administering meds we had done an IgE test and the indicators were very high for dust mite, for Bermuda grass, certain plants and dog hair. We therefore decided to use hypoallergenic pillows and sheet protectors for his bed. I requested the gardeners to mow our lawn in the morning when he is at school. We took little steps that made a huge difference in reducing his allergies. The doctor asked us to use a non-sedating antihistamine on a permanent basis that will keep him off chronic inflammations. When we got on the gluten free diet, within a month or two, we just didn’t feel the need to use the antihistamine again! It was a very big deal; the ABA therapists were reporting that his focus levels were much more just because he wasn’t distracted by his stuffy nose! Actually, there is more to this. There was something that our son used to do – which is lie on his stomach for a while mostly after eating a meal. This actually is an indicator that something isn’t really right with how he was digesting food. He wasn’t consistent with his bowels either. He didn’t sleep through the nights and with being consistent with his 100%GF and almost 90% CF diet we managed to get his bowels and allergies in control. He still spends a lot of time on grass and outdoors but he doesn’t have the sort of allergic reactions that we saw earlier. Most parents with children having ASD now do the GFCF diet without doing the tests. That’s how good the effects can be. There are others who report they didn’t see changes but I believe they are a really small percentage.

Evaluating the intervention There is something every parent must do before taking up any intervention. It is called as the Autism Treatment Evaluation Checklist https://www.autism.org/autism-treatment-evaluation-checklist/ or more commonly known as ATEC scoring. This is basically a questionaire (which most of us parents are used to filing up) that has many questions on how your child is presently fairing with regards to social skills, speech, cognition and basic stuff like sleep,etc. The lesser the score the milder the symptoms of autism and the higher the score the more the impairment or autism suymptoms. If a neurotypical child is being score most likely the score will be less than 10. So an ATEC score less than 10 means your child has recovered!! As the name suggests it helps us analyse if the intervention a.k.a treatment is working for the child or not? So we score the child before starting the intervention and we score the child again after about a minimum of 30 days of doing the treatment. If the score is lesser it means the child has shown improvements with that intervention else you can choose to wait for more time and score or find a new intervention that ‘clicks’ with your child. This scoring system is very helpful because often the changes are very subtle and we fail to acknowlege or notice them. Like before starting on the ABA intervention my son had a score of 80+ but after 3 months of ABA he had 56. After implementing the GFCF diet for 6 months, we were down to 35. The ATEC is my best friend. It gives me hope and keeps me on my toes. We continued further with other interventions and we are now down to 28 and yet 10 seems so far!

What to watch out for? .While going on the GFCF diet it is very important to note the ingredients on say the GF flours or GF pasta. If it is mostly corn based, its best to stay away from them as corn these day is mostly genetically modified (GMO). If you are able to source GMO-free and organic products it would be healthier options. These days more lentil-based gluten free products are available which an be better substitutes. Along with gluten and casein sensitivities, there are foods that are high in salicylates, histamines and oxalates which the children aren’t tolerating well. If the child is on a GFCF diet but is also taking foods rich in any of the three- salicylates, histamines and oxalates, you will see mood swings, out bursts and inflammation. If you are unaware of these factors you may assume the GFCF diet isn’t working! Histamine and oxalate tests are also available these days so based on that you will have to eliminate or at least reduce their intake. For instance, we took our child off spinach and used tomatoes, almond flour and almond milk moderately as they are high in oxalate. Google can easily provide you with the oxalate, salicylate or histamine food lists. Also say No to additives, preservatives, MSG, and food flavourings and colourings. The website  https://nourishinghope.com is very informative and is mostly intended for parents who have kids on the spectrum.

When will he ever be off the GFCF diet? I don’t know. I can only conclude by saying “It’s a diet worth all the troubles and the food we eat is what we are. What our kids can be is therefore in our own hands.”