If we really pay attention when we observe children, we soon learn that everything children do is done with a purpose, that everything children do is “right” from their point of view at the time they are doing it”–Magda Gerber.
I feel sorry that she did not add the word special but then I wonder if she really needed to at all? Why the difference? Why must all the best educational philosophies and methodologies be reserved for the so called ‘normal children’. Even parenting books are only focused on how one must deal with the neuro-typical minds while today, we are getting more and more aware of how diverse minds are getting.
Having children with ADD, ADHD, Autism, Downs or any other neuro-developmental disorder or even a mental illness or just high anxiety also requires a parent to be fully equipped to help them live a quality life. Such an inclusive world we are, isn’t it! Yes that is sarcasm for those who have autism. This is the least inclusive world for you my dear ones with autism as all that we care about in India is the ‘normal’, anything else is an abomination.
Today, I write for you autism — the little ones that keep me alight with passion. Autism spectrum disorder (ASD) is a developmental disorder of variable severity that affects cognition, communication, social skills and also life skills. The most common forms of autism are Classic Autism, Asperger’s Syndrome and Pervasive Developmental Disorder. The reason it is called a spectrum disorder is because it affects some people more than others. For example, some people are non-verbal, some have excellent spoken skills but may find it difficult to understand what other people mean and some others may be able to speak and process more than one language thus becoming multi-linguists.
My exposure to Autism in Glasgow helped me understand the ‘spectrum’ bit more clearly. I also worked with many who whilst being on the spectrum were still able to markedly develop in multiple areas and show improvements to the extent that if someone did not really interact closely with them, then they would have no clue that the individual was on the spectrum. The reason I mark this in my blog is because in India I see the complete opposite.
Here, I meet many teens who fit mainly in the classic autism bracket even though they had a diagnosis of PDD-NOS to begin with. I could not understand why they were regressing, many of those with a diagnosis of PDD NOS at the age of five, ended up with classic autism, or autism and depression or autism and schizophrenia or autism and ADD/OCD by the time they hit their teens. So, the condition did not only regress, but we added more challenging conditions to the bag. I began to wonder why that is?
An unusual term I have heard in India is “mildly autistic”– a term that truly confounds me. My co-founder Anima Nair always says — there is no mildly autistic just like there can be no woman who is mildly pregnant. Yes, she has a great sense of humor, but truth be told, she does have a point. Irrespective of what ‘mildly autistic’ means, I noted severe communication problems for example, teenagers could not understand what other people were saying or communicating verbally and non-verbally. They did not pick up on body language, facial gestures, contextual references and neither did they understand any social norms. They were also incapable of effectively communicating their own wants and needs. Instead they would attack others or themselves and express their heightened state of anxiety.
And of course, a constant request from many parents is if we can improve their communication. My answer is of course but the number of years he has communicated in a particular manner esp. when the neural pathways were being wired, he was allowed to communicate in this manner and if we do need to change this then one, you need to make time your friend and two, be willing to work with me and use the given interventions. Now, let’s not forget that this will be challenging because this teen who has accepted his mode of communication will now be forced to change it and with his current comprehension he may not even understand why we ‘the environment’ has suddenly decided to not like that style and now very much wants to change the hard wiring of that brain and reset it to meet our needs.
One particularly alarming quality that I have very often come across with teens in India is that they mirror not just the mannerisms of the favorite parent but also dream their dreams and openly endorse their rational or irrational perceptions. It was miserable to see that this mind was imprinted upon, they were not given the freedom to even have their own thoughts and feel their own dreams. This also indicated that they lacked expressive communication so the possibility of them communicating their own wants and needs was non-existent. They were suffering from advanced echolalia, repression of emotions and also an inability to understand their environments, make logical inferences which could lead to informed and independent decisions. And a combination of such dis-empowerment would obviously lead to pain, trauma, frustration and high anxiety.
Another unfortunate element that could and does create further chaos in this already complex mix is the one thing that took me totally by surprise. I could not believe that both the parent and teacher communities did not find it odd that the teens had such huge cognitive gaps. While I met boys aged 16 to 20, some of which had also passed their tenth exams, they were not anywhere near the cognitive abilities of even a third grader. We managed to disable a child in such extreme ways by disconnecting him from skills of exploring changing environments, disengaging logical analysis of simple functions through experiential learning and leaving the kids with a disassociation from reality and completely detaching them from their own selves? Quite an achievement, this must need a lot of effort, I would think. (Again, pointing sarcasm for my autistic minds)
I always wondered how we even expected an individual to survive once we had done all of the above. Why were we then still talking about fixing communication and behavior problems? And, did we even understand what we would be up against? Lost time, stagnated cognition, altered states of mind, loss of motivation, meaningless existences and purposeless souls who were reprimanded for even calming mechanisms. What all was I expected to fix and how?
Whilst, I have spent 6 years trying to combat a lack of cognitive, emotional & communication skills and also manage behaviors, I realized that there is a limit of how much we can help an individual. Especially, if we have a child with autism who has closed his mind to learning processes because of associated deep trauma then, we have lost the battle even before we begin the process. I have accepted that I will be able to help these individuals within limited parameters and those limitations are part of their developmental framework. But, what about the young ones who could have a chance? Do we allow this to continue? Can we really change this scheme of things and get the PDD-NOS or so called mildly autistic children to achieve their true potential? If yes, then how and why are we failing this mind?
Sometimes the answer is obvious, a lack of a circle or in simple words, we have lost the village that we need to help this child. Even if we have the village, we are focussing our energies on denial, stigmatising the condition and hence, working with methods that will only further disable the person rather than embracing the methods that would help the person. We must also remember such a village is just a hindrance and so customised villages with the right energies and solutions are mandatory. Let us try and understand the intricacies of such a village which is where one will find the answers.
So, what are the most essentials:
1. A school and home environment for the child that is physically safe, cognitively challenging and emotionally nurturing.
2. Involvement of the child in all care activities to allow the child to become an active participant rather than a passive recipient.
3. Sensitive observation of the child in order to understand the child’s needs.
4. Consistency, clearly defined limits and expectations to develop self-discipline.
5. Basic trust in the child to be an initiator, an explorer and self-learner.
6. Time for uninterrupted play and exploration of varied arts, movement and music therapies.
7. A structured curriculum to enhance communication and expressive emotional communication too
8. A peer group where the child feels belonged as opposed to isolated
9. An autism specific curriculum which is customized to suit the needs of that particular individual
10. Small classrooms that are set bearing in mind the possibility of peer interactions and learning
11. Qualified teachers and a tested process that will create the necessary impact in cognitive, social, emotional and life skills.
12. One involved parent who can be the liaison between the school and the family to help interventions work similarly on all platforms
13. The circle around the child needs the school (teachers, behavior experts, physical and academic trainers, creative practitioners and support staff), the parent, one medical expert, one psychiatrist, one counsellor, a diet/nutrition expert and any other therapists or professionals who can help with extra-curricular activities.
14. The medical expert is most necessary as they can assess development, help with sleep issues, help with interventions to manage anxiety or OCD or ODD or ADHD or sensory processing disorders or auditory processing disorders or any associated medico issues which will need interventions, and also help with any diet/nutrition problems that could help settle the child.
15. The counselor and psychiatrist will definitely help if the child is in depression or with breakdowns, we seem to forget that the children remain in continuous anxiety and along with the child the parents need this support too.
16. Any alternative practitioners will only add more relief and hence the intention is to grow the village.
17. However, one key function is that the village must function as a cohesive unit, if they instead are always contradicting each other then, the child will never benefit from this kind of a village.
18. A structured routine which will have to be followed throughout so we can ensure that the anxieties are kept at bay as much as possible.
19. A community of friends so that the kids are valued for who they are and not left feeling like they cannot belong or that autism is a problem because high-functioning autism is essentially something that can be supported in the above ways to become probably the most productive contributors on this planet.
20. Parents who are willing to accept the diagnosis and work and not fall in the trap of stigmas with a positive energy which will only further enable this community to function more effectively along with meeting the final objective of helping the individual with autism realize his or her true potential.
The above are the RIE principles, designed by Magda Gerber, an extension of this has been philosophized in multiple ways by Dewey, Krishnamurti, Ken Robinson, Howard Gardner, Waldorf and so on and so forth. While many parents with ASD kids may go like this is easy to do with neuro-typical children, but very hard for those on the spectrum, I go and ask — Do we even try? In India, where the norm was to have a classroom of 50 today, we are happier to pay higher fees in International schools where the class is limited to 15 or even 10 students. But if we insist that a kid on the spectrum needs a one on one or a limited class of three to five, then many question the need of such a set-up.
We, at SK are building this set-up — the very first academic school that is designed with interactive classrooms, a 1:3 teacher student ratio, trained autism experts, liaising with psychiatrists and doctors along with training parents and creating strong lasting bonds for the children. We are building a village and if you want this for your child, then we are the solution. The dream is to create the very first “Waldorf or Valley School like model for Autism or Autism and ADD/ADHD or even severe ADD/ADHD”. We are going to be THE VILLAGE!