Our Tryst with ABA

Before we deep dive into this subject, I want to alert you that this is going to be a long read. It will be better with a cup of coffee or tea perhaps! I will start with a refresher on the phrase “carrot and stick”. In our growing up years, I think we got a lot more stick from our parents than carrots when it came to being productive at school work or other tasks that required us to be fruitful! Ring a bell? Yes, carrots = rewards and stick =punishment! I think parenting has evolved to be more mindful and sensitive about the exposures that children have these days when compared to earlier. So, as parents we walk on a delicate balance of managing rewards and enforcing consequences (the word punishments seems so archaic now). We are mindful of our children’s interests and desires. We try to inculcate good healthy practices so that children are motivated from within to do everything right! However, that’s an ideal scenario and every day is not going to be ideal isn’t it? So, may I say we still resort to the carrot and stick principle as it gets us through the day?

With that perspective, let’s dive into ABA or Applied Behavioural Analysis Therapy. It is one of the evidence-based therapies that has existed for a long time. Simplistically speaking, it is about teaching the autistic child the skills that they are lagging in, with respect to their peers. They include every skill you can think of-fine motor, gross motor, visual tracking, cognition, comprehension, executive skills and many more. In our case they even taught my son to gulp down capsules and from then on there were no more struggles when it came to administering fever meds or supplements.

Some of the skills are taught at school by teachers too, so why is ABA required?        Firstly, this is a one-on-one therapy and mostly requires a lot of ‘repetition’. Every little thing taught is repeated till its ‘mastered’. So if the child has very weak fine motor skills, the therapist will begin teaching in small steps with different ‘prompts’ as in first by helping completely-say hand on child’s hand, then slowly just having hand on child’s arm and then may be just put the hand on the shoulder and then just no help at all or ‘fading out’ the prompt completely. This is sort of like how you will aid a one-year old child to walk. But for every step above, the child will do multiple repetitions and for every good attempt or a set of attempts as the case may be, will get a ‘reinforcer’. Yes! Reinforcer= Carrot which is basically anything the child loves most at that point in time. ABA is based on the premise that reinforcement of the correct behaviour will increase the occurrence of that behaviour. Why all the repetition? Its not because our kids aren’t intelligent but their grasping power has been affected by various underlying conditions that would best be addressed in another blog!

Can a parent be an ABA therapist? Sure why not! If the parent understands the importance of structure, is well-versed with the techniques of ABA like token systems that help obtain your child’s compliance, has plenty of patience, can devote a good amount of time, is able to make the required resources which include all kinds of visuals and aids, is ready to get work done even if the child is having a bad day and has the tool enlisting the comprehensive age related skills you need to teach the child, it is definitely possible for you to turn therapist. I somehow couldn’t see myself justifying that role, so we took help from an academy which provided therapists trained in ABA.

ABA status in our household. Before we started ABA intervention, when our son was 5 years,we had approached a premier school and the admission was denied with a suggestion from the principal that we should try a remedial school first but we were not in favour of a remedial setup and we began ABA instead while he still attended the preschool near home. Within 8 months into ABA, I again requested the principal to consider my child and he and the counsellor were very surprised by the growth. They were doubtful but decided to take my child into KG, and asked us to have the ABA team facilitate him in school and it’s been 3 years since. There has been tremendous growth; this year in Grade 2, when I saw him comfortably multiply with 2-digit numbers, I was reminded of the days when he struggled to use his fingers to do simple addition in Grade 1. There are areas of concern but he can now work independently and facilitation in the classroom is slowly being faded out.

Our concerns about ABA   1:Initially I found it difficult to trust the process and the therapists.  2: I felt it was crazy that my child had to be given lollipops or smarties (something like M&M) for say, just writing a letter A. Will he be always dependent on external motivators?                                                                                 3: I was afraid they will fail to see my son as an individual. He may be a child on the spectrum but the autism spectrum disorder is as broad as the number of different children diagnosed with it so each has a unique personality.    

Measures taken. While I write about what measures we took to address the concerns, I thought it would be nice to blend in some ABA jargon as well.    (For concern 1) I talked to the therapists constantly and it got easier to trust them with my child. The client- therapist relationship was more on paper and we worked like a team. The supervisor of the team was an incredible young lady with good amount of experience and an expert at her job. She recommended the website- Institute for Behavioural Training (https://www.ibehavioraltraining.com/ibt/parentelearning).  Completing the online training modules, not only helped me understand autism and ABA better but how my son needed things to be. It helped me understand and gain confidence in what the therapists were doing with my child, how they set expectations with him and handled him. I ensured that my husband and I will provide a sense of sameness by following similar strategies in our day to day interactions with him. It is important to note that most kids on the spectrum love structure, pattern, routines and rules. They thrive well if things are familiar. They feel safe and self-assured if they know what to expect. After doing this training,I got myself a printer and laminator and we had reminders and visual schedules all over the house. There was an automatic decline in tantrums and as parents we felt we were back in control.  The team lead would always give me a quick tip or two whenever she frequented my home. While, I could approach the team for advice, my suggestions were also well received.    With regards to using the stick, they followed guidelines and always kept me in loop if they had to bring in a ‘consequence’. A full update on what happened and activities done, was communicated after every session. This helped because in the event of my son losing his reward, we would need to be prepared for all kinds of unregulated behaviour. ‘Response cost’ a technique where rules and tokens are set; child loses tokens if rules are broken and if tokens are still remaining on completion of task, the child gets his reward. I saw this as a beautiful visual indicator for my son on how his actions can take his reward away and conversely how his actions can get him his reward.  We must remember that these techniques cannot be seen as merely training a child to react but being a visual indicator, this technique aids the child. Our children with autism spectrum disorder have challenges with auditory processing – either they can’t follow multiple instructions or they tune out information. So, if we go the usual route- constantly giving reminders about rules to work efficiently or even talking a lot while teaching can actually burden the auditory related processing. So, these consequences help get more compliance and children learn more quickly.  

(For concern 2) The biggest concern was regarding the premise of ABA which is the use of external reinforcers like 10 min of favourite videogame or cookies or a lollipop or chocolates as rewards for doing tasks. Will he ever be motivated to do a task without rewards? Will he ever do anything without wanting rewards? This is also what the ABA controversy is about -Are they training our children like how one may train a dog to do tricks? What kind of individual will my child grow up to be- someone who looks for constant external motivations to do tasks? I choose to talk about this with only my child’s experience as a reference. The team of therapists we had, were trained from an academy that complies with the C.A.R.D (Center for Autism and Related disorders) rules. It is an organisation that ensures therapists don’t just do their own versions of ABA rather stick to the guidelines. This team of therapists was able to win my child’s trust and mine. They continuously brainstormed for reinforcers that were healthy for his growth. They also did their bit in weaning-off the reinforcers that I wasn’t comfortable with. They used his obsession for a toy ladybug to teach about ladybugs, they made token systems and games around ladybugs. They used baking, board games and fun physical activities to teach language and academic skills. Today, especially after the COVID situation, where I have to help my son finish his school work, I can safely say that he is not dependent on rewards(carrots!!) to do tasks. Like his peers he is motivated by his interests and has the urge from within to do better.

(For Concern 3) Our child means the world to us and we want everyone to see him that way too. We want that his individuality is not compromised irrespective of what the guidelines of any therapy is. I believe that any form of therapy cannot be bigger than who it is meant for. So, if something needs to be bent/ customised to my child’s needs then it should be. At least that’s how my thinking is. The supervisor tailored my son’s learning program to cater to the demands from his school while still keeping sight of the gaps in my son’s growth and development. Even though team members changed, I made it a point to let them know who my son was. I created a document that I call “team induction bootcamp” that they got to read before they worked with him. I feel this helped them understand my son’s personality and get onboard quickly. They also taught skills on the go. It wasn’t like my son was always seated on a chair to be learning! Infact it wasn’t just the “classroom” but our entire home and its premises that were used to run sessions. It wasn’t easy days but in retrospect it helped the therapists do their task with a more compliant child. They were flexible enough to give him some control on how a session would play out like he could say the order of the activities and the breaks. It is possible that not all ABA therapists are as accommodative and flexible to the way you want your child to be dealt with. We got lucky with our team of ABA therapists who were very loving and caring and that’s why I say this- ‘Our tryst with ABA’! An effective intervention is one that doesn’t use the one-size-fits-all appoach.

There are some concerns raised around how ABA tackles kids who stim (flapping of hands, spinning objects or other repetitive actions). We didn’t have to deal with this aspect as our child didn’t stim. However there was a point where my child’s obsession for a particular button-sized ladybug toy was hindering his ability to focus and when the therapists were trying their best to keep it away during the sessions with timers or ignored his repetitive talk about bugs, I did intervene and asked the team if we could indulge in his obsession instead, -basically acknowledge everything about the bug-talk and move on with the task. I was reading the book “Autism Breakthrough” by Raun K Kaufman at that time. This gentleman has been cured of his autism by the interventions used by his parents who later went on to develop the Son-Rise program. This program is for parents who want to learn how to manage their child’s autism. They believe that by indulging and truly enjoying what the child loves to do (even if it’s the most ridiculous thing) you will be able to find a way into the shell that your autistic child has created around himself and from there you can lead him out into the typical world. Basically, it focuses on building a relationship with your child. Their premise is that a child’s learning can take place only in a safe and fun place within the context of a social relationship. I realised that the more we indulged our son’s perseveration or obsessions the more he engaged with us, the more he communicated and eventually the obsession lasted for a lesser period of time. I think this was because he felt reassured that he was being heard and we took interest in what was important to him. In all autistic children some aspect of their social skills is not developed. If it is not developed naturally, to teach it would be a herculean task. So for those parents who don’t see eye-to-eye with ABA, I suggest looking up the Son-Rise program at https://autismtreatmentcenter.org/ as well.

Controversy or no controversy, I believe that it is not the means (ABA or the Son-Rise or Floor-Time or Play therapy) we use but it is how we execute it that matters most. Are you just going to be a bystander expecting the therapists to do their job and you do nothing beyond their sessions? Then you will also see that the progress is limited. The more actively you participate -time wise, emotion wise, information-wise; the more will be your returns.

To Share or Not To Share

Allowing your emotions to flow on paper in itself can be difficult at times and allowing them to be out there in the open for every one to see, is quite something else. I could have easily decided that I will share what I have learnt about the autism world without it being personal. It would have looked liked a well-researched article perhaps. The thing is, when I started learning about autism at the time we recieved the diagnosis, I got a lot of information but it was the blogs with first hand accounts and personal experiences that energised me.

Not to Share
The part of the world I come from, its not easy to share that your child or grandchild has developmental issues or has disabilities. The word autism is like a stigma that is best not uttered. Infact I almost sense that this is something people are ashamed about and want to hide. And if, like in our case the child looks as typical as his peers, parents may be in denial for longer than they should be and they would prefer that it is not addressed! I have heard from mothers of children with ADHD(Attention Deficit and Hyperactivity Disorder) that the father usually finds it difficult to come out of the denial phase. This is because children with ADHD may be good in academics and communicate as well but lack social skills and/or have difficulty self-regulating. So often its easier to say ” He will grow out of it”. This causes so much tension in the households and there is significant delay in managing the autism. When in denial, the question of sharing is out of scope! What if my child is not asked for play dates or invited for birthday parties? This fear that our child may be alienated, deters parents from being open about the diagnosis and they loose out on the benefits of sharing.

To share As parents we sometimes tend to seek validation or want to be heard out without being judged or simply want to brainstorm on domestic problems. Parents caring for children on the spectrum really want more such oppurtunities but instantly feel the lack of it because friends and family in most cases can’t really identify with their situation. This so called Autism Spectrum is as broad as the number of kids diagnosed with the disorder. It just means that within the autism spectrum, each child presents unique challenges. Yes, there are some broad categories but if two mom’s with the same diagnosis were to discuss, they would find that their children are so different. So this makes it even more challenging to seek specific answers to manage the situation they are in. However, if more parents were to share and information got more specific, imagine how helpful that would be. Just as helpful as all the parenting sites you register with when you are expecting your first child. Apart from sharing within autism groups, being open about your child’s challenges, gives a chance to parents with neurotypical children( another word for typical or normal children) to accept and make accomodations for your child. While it is difficult for them to understand all of our challenges atleast we offer them a chance to sensitise their children to the needs of our children. This allows for more social interactions which is so essential for our children. When I shared my first blog, I was asked by a family member-“Is this going to be read by everyone? Why let everyone know about your child?” Yes, I am writing about how I am helping my child and my world revolves around him but the focus in these blog posts will always be the process and not my child. Sharing the process especially if you think it works well, I believe is a good thing. We are all familiar with how sharing of best practices, be it in workplaces or businesses has only been beneficial, so why not put it into play in this aspect as well?

To my fellow-moms When Prince Hamlet said “To be or not to be” , he was deciding whether to stay alive or escape from his troubles by dying. To share or not to share, is synonymous in the sense that it it is about deciding whether to help, enrich and live positively or choose to be in a shell that gets hard for you to handle in this long haul.

Managing Vs Treating Autism

Here I take off on a note from my last blog –The Denial, the Realization and the Setback. I received some feedback saying “Its sounds like you were marketing for Dr Woeller’s website”. So with this post I would like to clarify that.

Imagine this: Day 1- You get a headache, you just deal with it or sleep it off. Day 2- You wake up and you still have a headache, you head to office and people around you seem all insensitive and loud. The work that comes in seems like a burden and you did rather get to end-of-day as quickly as possible.If you are unlucky, you may even have an argument with a boss or colleague. You pop a pill and hope the headache subsides. Day 3 – Voila! No head ache, just a bit groggy, but feeling so much better after all the sleep. Days go by and Day 6- The headache is back. Damn! Now you start thinking- Is it lack of rest, am I not hydrated enough, is it a vision issue , is it the cold weather, is it a case of indigestion? From all the probable causes lets say it turns out to be vision-related. Great!You now know where to go and what to do.

May I rephrase the above – You tried managing the symptoms by popping a pill and when you went after the root cause you were actually thinking of treating it. Treatment, need not necessarily be in the medical context. It can be anything which is healing, or anything that is therapeutic.

Now consider: A young child, 2-3 years old, with underdeveloped language skills, looks pretty much like the kids his age, has some weird requirements that seems to hassle the parents a lot and has tantrums that cannot be explained. This is not the terrible twos or tantrum threes that is seen usually in typical kids that age. This is basically some physiological problem presenting itself in the form of a tantrum or rigid behavior or trying to escape situations.

Now compare for yourself– The adult with the headache got away with his behavior at office, but the 3 year old child got the autism diagnosis and did not get a treatment for his behavior!!!

When I didn’t get answers from the medical community closest to me, I was told by the director of the academy providing the ABA therapy, to consider biomedical intervention. She herself, is a mom to a non-verbal child and believed that while ABA therapy can help in behavior management, skills and language development it would be more fruitful if as parents we also try to find out the root cause(s) and eliminate them. So the way I see it – play therapy,speech therapy,applied behavioral analysis therapy, occupational therapy and the likes will help you manage the symptoms of autism but you need to start on treatment to see the effectiveness of the therapies.

So how do I find the root cause and if I want to get my child the right treatment where do I go? As I said in my earlier blog, most pediatricians dont offer much autism-wise and that is why I owe it to websites like that of Dr Woeller where I understood the need for testing for food allergies, I understood the importance of heavy metal testing, the need for the GFCF(gluten free, casein free) diet and the need for supplementation. You may choose not to go to this website and try to find another resource elsewhere, but its important to find the resource that can guide you! Please be rest assured no marketing gains whatsoever!

Now that I have started, I will also mention that the Facebook lives of Dr. Jared Skowron is super-informative. He is also associated with Spectrum Awakening that has supplements made for kids on the spectrum. I will forever be indebted to the annual Autism Hope Alliance summit and the Autism Recovery summit for allowing me to sit in the comfort of my home and listen to the various interviewees who talk about managing and treating autism with evidence-based interventions that may be considered controversial; supplements suggested may not be child-specific but parents are trying these and seeing results. There were nights, I haven’t slept as I needed to catch up on the interviews while they were still free! They kick-started this Atypical journey in 2017 for me and every year since, during the April-June period I am rejuvenated by all the information they have to share.

Look out for our experiences on interventions that we used for our son in the future blogs.Until then, dont just manage; treat as well!!

The Denial, the Realization and the Setback

I remember the comments of the junior nursery teacher,when I would go to pick up my son from his school.–“Your child is unable to cut along a straight line”. “He doesn’t answer anything”. “When I asked him to pick up the paper and put in the dustbin outside, he just looked at the window instead”. “He cant sit straight and slumps backward.” I even sent her videos I recorded at home to let her know that he actually knows the alphabets, numbers and shapes that were being taught. She was surprised but continued with the comments.

At the time, we had moved to South Africa from India and my son was 4 years old, starting school with kids from various parts of the world and teachers with new accents. I was pregnant with my second child and I didn’t want to be stressed by a teacher! I felt the teacher was judging the child too fast and her remarks didn’t go down well. I was clearly in DENIAL-NOTHING IS WRONG WITH MY CHILD! The teacher’s comments still ring strongly in my ears because had I known the seriousness then, we wouldn’t have lost a full year and would have looked for concrete solutions sooner. Anyways, that is life and I just felt myson needed a teacher who could hug him, warm up to him and not be as distant as this teacher was. So my husband and I put him in a preschool kind of environment where there was more play, more color, less rules and more importantly hugs!

The first bad news came in the form of the first term report card where the ticks against the learning goals were marked mostly in the last column and now I had alarm bells ringing in my head and the teacher suggested Occupational Therapy. So we got the OT assessment and the report was filled with problems– poor bilateral integration, poor gross motor planning, fine motor skills affected, auditory processing affected.There was nothing positive and strangely no mention of autism! We also rushed to a pediatrician who couldn’t say much as my son wouldn’t comply with him. Since I was in my last trimester, I just let the dad and therapist do all the discussions. The OT sessions began and we conveniently waited as if the therapist had the magic wand that would wish away all of our son’s problems.

There was however no magic seen in the end of year report card. He clearly needed more one on one interaction at school and the Occupational Therapy wasn’t helping as expected. The experience with OT taught me that it needs to be done everyday for a good amount of time and NOT like how we did – 30 minute sessions just 2 times a week. In countries where therapy doesn’t get covered by the insurance or the medical aid, parents find it economically taxing in addition to the emotional drain. Children with developmental delays need continuous and constant therapeutic interventions in those initial years for you to be able to see results.

Delivery done and my second child out, I could re-focus on my first!! I was frantically looking for extra support in school when by sheer coincidence I heard about Applied Behavioural Analysis. Their assessment report clearly stated Autism Spectrum Disorder- Severity Level 1. It was like all hell had broken loose. The word autism to us meant something else altogether at that time….and it was impossible to see our child in that way. We were enlightened by this particular academy of ABA therapists that things can get better. I was given documentation and that was when I came out of denial.

The realization happened. We began to understand our child. We no longer found him stubborn or lazy, we just had to make ourselves interesting for him to participate. Tantrums during transitions got replaced by visual schedules. We reacted to situations differently and we just changed! Things can only get better right? Oops! No, its time for our first setback. We needed validation, guidance and support from the medical fraternity so we went to them and the diagnosis is confirmed by all kinds of pediatricians namely- neurodevelopmental and the developmental. All they had to say was- “You are on track…Keep doing OT and the ABA. That is all there is to do.” Visiting them was just a complete waste of time, effort , emotions and of course money! The answers you want as a parent are only in the RESEARCH. The reading and researching started and it continues until today.

I hope I didn’t loose your interest with a rant that long? This atypical journey is one of hope and recovery and I want the post to end on that note. So while you figure out and juggle between speech therapy, physiotherapy, applied behavioral therapy, occupational therapy and the likes, its also important to know that there are DAN (Defeat Autism Now) doctors out there- Yes, unfortunately they are so few, that one may mistake them to be quacks as your pediatrician is completely oblivious of them and is almost certain there isn’t a cure for Autism.BUT these DAN doctors believe that “Autism is Treatable“. They give hope and parents see results. Their work is driven by their experiences in finding the root cause , their insights that look beyond the symptoms and not on what the medical community otherwise is driven by -medicines and symptoms. I was lucky enough to get guidance on the website of one such doctor- Dr Kurt Woeller. My child was not a direct patient; I started on this path to recovery by seeking information from his website – autismrecoverysystem. He has elaborated the steps involved in the biomedical intervention and what it requires of you. If you are in the US and you can access these doctors its great but if you are in another continent you really have to be sure as to how much you can take up. I say this because some of these steps require you to don the hat of a nurse or doc giving shots and meds to a very young child! And the responsibility of your child lies in your hands. While I started warily on that front, I did use the knowledge to take a slightly non-invasive path.I was able to get some very important tests done with my son’s blood,urine and stool samples and the test results guided me through.

It will take a while before pharma and the medical community can provide us with the much needed help but with the number of autism cases rising to 1 in 59 children in the US alone, its only a matter of time that what the DAN doctors are practicing will be more widely accepted and pediatricians will have more to say than they do now!

Atypical Calling

“Roops”…..”Roopa” …”Roopika aunty”…..”Mama”….”Mommy”….these have been the words my eldest son has addressed me in the past 8 years of his life. Now as he begins to approach his 9th birthday, I hear “Mama” all the time and I feel a sense of pride to see how much he has grown. If you belong to the typical world, you must be thinking – What’s the big deal here? I have been addressed in many ways by my kids too. The point is your child called out to you in different ways showcasing their love and creativity while for my child he was merely addressing me the way his father or his grandparents or his peers would address me!!! Now that is neither creativity nor love but what a child on the spectrum deals with —SO MUCH CONFUSION, SO MUCH TO PROCESS…so he takes the easy way out…to mimic!!

So here is me, posting my first blog ever to share my musings and learning from this absolutely roller coaster ATYPICAL journey! Who am I? I am a stay-at-home mom to two lovely boys enjoying both —every atypical challenge my first child presents to me and with the birth of my second child in 2016, I get all the typical experiences that I missed the first time round!!! I juggle between the mundane household chores to being a parent to being a teacher to being a therapist whose loyalties swing between the ABA (Applied Behavior Analysis) strategies and the Son-Rise program strategies to being a researcher constantly looking for interventions that would steer us to recovery. Oh! I missed one more role which is- I need to help my child gulp down binders and supplements that go beyond vitamins and minerals.Even though I consult a holistic practitioner who guides me through, the decision to continue or discontinue these will be based on my observations of how my child reacts to these so I do what I think ideally a pediatrician should be doing! So that would be a short description of me and how my day spans out. Most mothers to autistic children or children with special needs or mothers to children with autism spectrum disorder will identify with this and I have just one thing to say, ” We can choose to be in this together and make things easy or make this long haul tougher by being in our shells”.

What can you expect if you visit my blog? You will see my anxiousness, my rants and helplessness but most definitely you will see my observations of life around with my child as reference point, some insight into those interventions that my child benefited from, some links to people and summits that helped me focus and stay motivated towards my goal. Yes, I believe completely that I can get my child to a point where his diagnosis will no longer hold good and he will not be distinguishable from the other typical kids he goes to school with.

This post will definitely be incomplete without a reference to the star in my life, my eldest son who is a very happy, kind and generous child. While he is described as weird and funny by his Grade 2 peers, he is absolutely oblivious of his diagnosis which is – ASD( Autism Spectrum Disorder) -Severity level 1 which is sometimes referred to as Mild Autism. He is the child who cant get the humor in a funny story but he would join in the laugh as he loves to see happy people around him. He is the child who cannot lie convincingly, the child who cannot understand why a classmate can be mean, the child who is so excited to see a friend that he would fail to greet and start talking about planes instead!He is a child working hard, putting hours on therapy and other skills development after school while his peers are enjoying free time. He is the child who has pushed me to put my best foot forward…. This is my calling- an atypical calling !