Autism Awareness Campaign - State Support for Autism

Living with an autistic child puts additional pressures on families.  Pressures on all fronts.  In India all disabilities / impairments were classified into one single “disabled” category.  Managing developmental and intellectual disabilities is a completely different ballgame, compared to disabilities such as visually impaired, hearing impaired of physical disabilities.  Based on work done by many NGOs and parent associations, Government of India has come up with many provisions for helping persons with Autism.  In today’s poster, I am touching up on what all suppprts available from the state for Autism, in today’s autism awareness poster.

For the first time in India, in 2016, a medical board constituted by the government, which would use scientifically developed tools to identify autism cases and give autism disability certificates.  So far, all certificate carried only “Mental Retardation”, for all developmental and intellectual disabilities.

Unique Disability ID (UDID):  "Unique ID for Persons with Disabilities” project is being implemented with a view of creating a National Database for PwDs, and to issue a Unique Disability Identity Card to each person with disabilities. The project will not only encourage transparency, efficiency and ease of delivering the government benefits to the person with disabilities, but also ensure uniformity.

In accordance with The Constitution of India, and Rights of Persons with Disability Act 2016, there are several government schemes and programmes that can be availed by a person with disability in India.  To avail all the schemes mentioned below it is mandatory to have a disability certificate. Though currently there is no disability certificate being issued just for autism, people who want to avail any schemes can opt to take the disability certificate for Autism with MR (Mental Retardation).  Though my daughter is autistic, her disability certificate reads “Mental Retardation”, a term which has a very negative connotation.

The National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities was constituted by the Central Government as a legal entity in the year 2000.  The objectives of the Trust is to enable and empower persons with disability, facilitate support to registered organisations, deal with problems of disabled persons who do not have family support, promote measures for their care and protection in the event of loss of parents and guardians, evolve a procedure for appointment of guardians and trustees so that equal opportunities, protection of rights and full participation of such persons is ensured. The National Trust has several schemes and programmes available for persons with autism and their families. I believe, this is a big step, but to realise what is envisaged in the National Trust, it is a long way to go.  Some basic information about some of these schemes are detailed below. 

DISHA (Early Intervention and School Readiness Program):  This is an early intervention and school readiness scheme for children upto 10 years.

SAMARTH (Respite Care):  A scheme to provide respite home for for orphans, families in crisis, persons with disabilities from BPL, LIG families with at least one of the four disabilities covered under National Trust Act.

GHARAUNDA (Group Home And Rehabilitation Activities for Disabled Adults):  In order to provide a sustainable solution to “What After Us?”, GHARAUNDA - a scheme of Lifelong Shelter & Care was conceived. GHARAUNDA seeks to provide an assured minimum quality of care services for persons with autism (and other disabilities) throughout the life at an affordable price on a sustainable basis; encourage assisted living with independence and dignity and facilitate establishment of requisite infrastructure for the assured care system throughout the country.  I have no clarity of the modalities of this scheme.  

Niramaya (Health Insurance Scheme): This is a unique health insurance scheme for persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities. This scheme provides comprehensive cover irrespective of type of disability, without any selection or exclusion criteria of the pre-existing condition. An applicant may receive insurance cover up to Rs. 1 lakh with a single premium across age bands.  The infrastructure for Niramaya scheme seems very poor.  Twice we have given cheque for annual premium at a designated place (in Mumbai).  There was no response at all to our many follow ups.  We did not get any policy documents.  The social justice departments of respective states have to ramp up a lot to make the process easier for beneficiaries. I think, Kerala Govt is the only state government, that pays premium for all the eligible persons in the state.  The social justice department has an excellent framework for such support in Kerala.

VIKAAS Day Care:  A day care scheme for persons with autism, cerebral palsy, mental retardation and multiple disabilities, above 10 years for enhancing interpersonal and vocational skills. 

PARIVAAR – National Confederation of Parents Organisations (NCPO) was formed in the year 1995. It is a Federation of over 245 Parents Associations and Civil Societies in 31 States of India working for Persons with Intellectual and Developmental Disabilities consisting of Intellectual disability,  Autism and ASD, Cerebral Palsy and Multiple Disabilities.

In addition, there are benefits such as Income Tax concessions for parents under 80U and 80DD, travel concessions in trains and buses, concessional rates in ITDC hotels etc.  

The social justice departments of each state has to ramp up the infrastructure to realise the benefits envisaged in the National Trust. 

Concluding this post with a quote “It’s not about fixing something or curing something.  It’s about maximising potential in every human being and just reaching out and building a better community that can support everyone” - Susan Byram.

Autism Awareness Campaign - Challenges of Raising an Autistic kid

Cultural beliefs and practices affect when and whether families seek care, their understanding of disorders, their beliefs about causes, and their choice of treatment procedures.  In today’s autism awareness poster, I am touching upon the issues.

In India, the birth of a child is seen as a gift from God.  Disability is seen as a tragedy, in the premise that it is not possible to be happy or enjoy a good quality of life.  Traditional parenting practices are followed with most of the support comes from within the family.

Majority of people in India believes in the concepts of Karma, God’s will, fate or destiny, as the important determinants of many events in life, including illness and suffering. This leads to the parents of children with disabilities considering life to be of sacrifice and adjustment for themselves,  instead of focussing on rehabilitation for the child.  

Raising a child with autism puts tremendous stress on the parents, other family members and caregivers.  In addition to increased responsibility, social stigma contributes to this. The stress of caring for a child with autism can affect the psychological and emotional wellbeing of parents.  Factors that contribute to increased stress in parents of children with autism include the child’s behavioural problems, lack of access to appropriate services, financial constraints and societal attitudes towards disability.

To cope with these challenges, parents device their own ways including accommodation or acceptance of a biological basis for autism, social withdrawal, reorganising life and relationships, empowerment, seeking social support, changing expectations, and turning to spiritual and religious beliefs. The socio-cultural diversity in India vastly influences the way parents cope with the situation. 

In joint family setups, extended family members, especially grandparents provide the first line of support. The joint family system provides prop that helps parents in caring for the child with special needs, and managing other schedules.  As we are staying in joint family, Pratibha got love and care in abundance, from grandparents and extended family members.  In nuclear families, or in families with lack of a support system, one parent (usually the mother) often compromises on professional aspirations to take care the child.  Some parents seem to seek consolation from the thought that autism in the child was due to past “karma”, and so the child was destined to be born with it.  Parents of one of the families with autistic child, was telling me that no therapies will work if the child is a result of past karma, and they were resorting more to prayers and poojas rather than proven intervention approaches.  There are many parents who turn towards religious beliefs and perceive prayers as a powerful tool to tackle the issue. 

Parents who are unable to cope with the stress of dealing with a child with autism, often have marital and family conflicts, and are prone to anxiety and depression.  I have seen couple of cases where mother is forced to look after the autistic children (unfortunately, two of their children are on autism spectrum) as a single parent.  The husband believed that the children became autistic because of mother and divorced.  Parents who manage to cope up think of strategies for creating a loving environment for their child and families despite the adverse situations, financial constraints and limited services.

The biggest difficulty parents and families face in India is the social stigma from the community around.  We have faced it during our stay in Chennai.  Situation is different and is favourable in Mumbai.  As a result of social stigma, many parents stop going for social gatherings and events.  Society’s obsession for ‘well-behaved children’, puts additional pressure on parents.  There are many cases, where matrimony for siblings of persons with autism getting difficult.

Prevalence of autism increases year on year.  But attitude changes in society is happening at much slower pace.   This leads to tremendous emotional imbalances in society and manifests as social stigma.  I hope the focussed campaigns for awareness by activists, parents and professionals working in this space should improve the situation, else it is going to be a huge injustice to the diversity that nature has provided us with.   

Autism Awareness Campaign - Measurement of Autism

Management thinker Peter Drucker is often quoted as saying that “you can’t manage what you can’t measure”.  

Autism is one of the most complex neurological disorder.  Many co-occurring conditions along with autism, makes the situation more complex.  In order to provide right interventions with medicines, therapies or other rehabilitation procedures, it is critical to get a good understanding of severity of different conditions.  Specialist doctors and psychologists have to use different measurement mechanisms to measure different aspects of autism and other co-occurring conditions.  In today’s poster I am touching upon some of the predominantly used measurement mechanisms.  

Autism-spectrum Quotient (AQ) is a questionnaire published in 2001 by Simon Baron-Cohen and his colleagues at the Autism Research Centre in Cambridge, UK. Consisting of fifty questions, it aims to investigate whether adults of average  intelligence have symptoms of autism spectrum conditions.

Childhood Autism Rating Scale (CARS) is a tool used to identify children aged 2 years and older with autism. The CARS was designed to help differentiate children with autism from those with other developmental delays, such as intellectual disability (formerly called Mental Retardation).

Gilliam Autism Rating Scale is a norm-referenced instrument that assists teachers and clinicians in identifying and diagnosing autism in individuals aged 3 years to 22 years and in estimating the severity of the child's disorder.

Stanford-Binet intelligence scale (IQ) is a standardised test that assesses intelligence and cognitive abilities in children, beginning at age two, and in adults.

Social Responsiveness Scale (SRS) is a 65-item rating scale that measures the severity of autism spectrum symptoms as they occur in natural social settings.  SRS Identifies the presence and severity of social impairment within the autism spectrum and differentiates it from that which occurs in other disorders.  

Autism Diagnostic Interview-Revised (ADI-R) is a structured interview used for diagnosing autism, planning treatment, and distinguishing autism from other developmental disorders.  The interview can be used to assess both children and adults, as long as their mental age is above 2.0 years.

Autism Diagnostic Observation Schedule (ADOS) is an instrument for diagnosing and assessing autism. The protocol consists of a series of structured and semi-structured tasks that involve social interaction between the examiner and the person under assessment.

As a parent I was not sure, whether any of these tests were done for Pratibha. Yes, we were part of her first assessment by a developmental paediatrician in Chennai.  At the end we got a 3 page long report by the doctor describing her conditions.  No specific label such as “autism” was assigned to her.  The disability certificates that we get from designated Govt hospital in Mumbai, mentions only the label “Mental Retardation”.  From the age of 12, we used to take her IQ (I think using the Stanford-Binet scale) every alternate year, to check changes in her intellectual functions.

The idea of this poster is to make people aware on different mechanisms / scales used to measure autism and associated conditions.  All these measurements are to be taken by qualified psychologists.  If you cannot measure it, you can’t improve it.  So measurement of parameters associated with autism is critical, for coming up with improvement plans to manage autism. 

Concluding this post with a quote “Autism is about having a pure heart and being very sensitive. It is about finding a way to survive in an overwhelming, confusing world . . . It is about developing differently, in a different pace and with different leaps”, by Trisha Van Berkel

Autism Awareness Campaign - Conditions that accompany Autism

It has been observed that more than half of people in autism spectrum have four or more other conditions.  The types of co-occurring conditions and how they manifest varies from one autistic person to the other.  These conditions can make worse the features of autism or affect the timing of an autism diagnosis, so understanding how they interact with autism is important.  In today’s poster I am touching up on this.  

The poster presents four groups in which the conditions fall into, and the possible traits or conditions.  Different surveys indicate that between 11 to 84 percent of autistic children also have anxiety.  Similarly, serious sleep problems may affect anywhere between 44 and 86 percent of children on the spectrum.  Differences in diagnostic criteria and other study parameters may be the reasons for the wide margins.  

Nearly all the conditions that accompany autism can have serious effects on well-being of the person.  And some have more severe consequences than autism does. Treating related conditions may also ease autism traits.  For instance, treating seizures early may decrease cognitive and behavioural problems in children with tuberous sclerosis complex [Tuberous Sclerosis Complex is a rare genetic disease that causes non-cancerous tumours to grow in brain and other vital organs such as the kidneys, heart, liver, eyes, lungs etc].  

Some autism traits, such as poor social skills and sensory sensitivities, overlap with those of other conditions.  ADHD traits may also mask or mistaken for those with autism - and delays when a child receives an autism diagnosis, losing on the most critical “early intervention”.

Autism diagnosis may be particularly tricky in people with intellectual disability or severe language delays.  This must have happened in the case of my daughter, as she has intellectual disability (formerly called Mental Retardation), language delays and Obsessive compulsive disorder.   

Overall it is very important to diagnose such multiple conditions that co-exist with autism, to properly plan and execute the interventions at right time.  Awareness of these were very poor and good to see it is improving these days at least in urban areas. 

Concluding with a quote “Someone with Autism has taught me love needs no words”. 

Autism Awareness Campaign - Autism through the life span

Autism is a lifelong condition for most.  The perception of most people when they hear “autism” is always related to children.   Majority of persons with autism continue to be affected by the disorder and continue to need support through out their life.  In today’s poster, I am touching up on “Autism through the life span” and a state transition of parent’s thoughts.

Like anybody else, persons with autism will continue to experience changes, triumphs, challenges, victories and difficulties.  It is not easy for parents and care givers to take persons with autism reach their full and optimal potential. 

Just like any other “Neuro-typical” persons, autistic persons also goes through the pre-schooler, child, adolescent, young adult, middle aged and senior phases.  But, the difficulties and challenges they go through are way different than the ‘Neuro-typical’ persons.  

“Pre-schooler” phase is very critical for detection and early intervention.  If it is possible to successfully pass through the “early intervention” at this stage, challenges would be relatively lesser in later stages.   Parents are in “Why Us?” state of mind at this phase.

“Child” phase is where the parents struggle to find the “right” school, obviously a ‘special’ school.  As ‘inclusive’ school system is yet to get realised in India, invariably most autistic persons end up in ‘special’ schools.  School life helps in socialisation, control of behaviours and and try to acquire few basic skills.  The degree to which these happen, depends on the severity of autism and abilities developed.  By this time, normally the parents moves from “Why Us?” to “What Next?” stage.  

“Adolescent” phase also is spent in school.  A survey in Mumbai reveals that on an average, an autistic child goes through 4 different schools till 18 years of age.  Reasons could be many.  During this stage, the person goes through many therapeutic interventions, special education, acquires new skills and applies basic skills.  Learn to make choices.  Most importantly tries to learn and deal with puberty.  By this time, most parents / families more or less reaches “Acceptance” stage.  

“Young Adult” phase is where he/she has to leave school and move to a job or a workshop.  Very few high functioning autistic persons get opportunity to work based on their abilities.  Majority joins different sheltered workshops, where they get into engaging activities.  It is not easy to sustain these engaging activities for many years.  Many may require support of care givers in addition to parents and family members.  This is the time they have to learn to solve life problems.  Parents worry starts increasing during this stage regarding settling their ward somewhere or the other. Some think of matrimony, but for many it may not be possible.  Many parents moves to “Advocacy” stage during this phase.

Once the person gets into “Middle Aged” phase, parents starts worrying more and more. The biggest problem that parents worry for is “What after us”? Not at all an easy problem to solve.  The way this stage problems are solved differ based on cultures.  In western society, the autistic persons are made to stay independently in shelter houses, with support of care givers.  Whereas, it is not easy for Indian parents to leave ‘a son or a daughter with autism’ to leave alone or somewhere else.  A huge community supported infrastructure is needed to address this problem in India.

“Senior” phase is the most difficult for the autistic persons, with health issues and coping with loss of near and dear ones.  Parents don’t have any clue about who is going to take care of their son / daughter, after them.  There is only one prayer in the minds of parents everyday “Oh god, please give a long life to our son / daughter.. and allow us to live one more day than him / her”.

I will conclude this post with a quote “An Autism diagnosis is life changing, but NOT life defining”.

Autism Awareness Campaign - Brain Re-Engineering?

As the last poster on the topic of therapies, today I am touching upon something very new, brain re-engineering.  The term ‘re-engineering’ I am using to imply making physical changes.  The fMRI scan or PET scan of brains show levels of activities in different parts of the brain.  PET scans show brain processes by using the sugar glucose in the brain to illustrate where neurons are firing.  Because of lack of activities or lower levels of activities in many parts of brain of persons with autism, the right kinds of networks of neutrons doesn’t form, leading to the persons suffering from many cognitive, behavioural, language and social limitations.

Regenerative medicines, the most recent and emerging branch of medical science, deals with functional restoration of tissues or organs for the patients suffering from injuries / chronic diseases.  The spectacular progress in the field of stem cell research has laid the foundation for cell based therapies for diseases and disorders, which can not be cured by conventional medicines.  [This I have taken as it is from a paper in International journal of Cell Biology].

Lots of research happening in Many Universities and other Neuro-science institutes around the world; the work from Duke University and Stanford University seems to lead the way.  

In 5th poster of this Autism Awareness series campaign, I have indicated that because of gradual reduction of degree of plasticity of brain as the age progresses, the ability of brain to modify its connections to re-wire itself diminishes as the person grows.  This is the reason why “Early intervention” is critical.  That opportunity was lost for my daughter.  One possibility was, creating new neurons in the brain which can repair the cells of affected regions in the brain, and then go for an “early intervention”.  Just a dream!

About 5 years back, we did get an opportunity to create new neutrons in the brain through stem cells transplant.  The method was part of a ‘clinical trial’ process.  As it is still under research, there is no approval by FDA for this.  But based on my own research and conversations with many researchers in the field, we took a decision to go ahead with stem cell transplant into Pratibha’s brain, from her own bone marrow.  We went with a hope that there will not be any negative impact or side effects.  The transplanted stem cells get multiplied many folds and transform themselves into neurons.  Once the transplant is done, I felt like having a real neural network to train.  After working on many academic and industry projects on Artificial Neural Network (ANN), here is an opportunity and a challenge for me to train a Real Neural Network (RNN)!  Twenty two parameters were identified, intensive therapy sessions were given (predominant being with music), measurements for these 22 parameters were taken daily, and monitored the progress.  Course corrections in network training was done based on the changes observed for the chosen parameters.  Almost an year long intensive work on her, resulted in many significant improvements.  Similar intensive therapies were tried before, with not much changes.  I am sure, the re-engineering of the brain, by introducing new neurons and doing intensive therapies to train the fresh neutrons and develop networks in the brain, that led to improvements such as close to 80% reduction in aggression, considerably improved cognitive ability, refinement of many social behaviours and better communication.  [The two brain PET scan images presented in the poster today is of Pratibha’s, first one taken just before the stem cell transplant and the second one 2 years after that.  Significant changes in activity levels are seen in the scans].

Large number of clinical trials are in progress today on using stem cells for autism.  Hoping that this will open up a completely new therapy for autism.  Because of the promise shown by stem cell based regenerative medicine approach, quite a few clinics without having the required equipments, expertise and capabilities have come up in the country, and exploit parents.  But there are genuine ones too.

I will conclude this post with a quote: “Autistic Brains make connections in unusual ways”.

Autism Awareness Campaign - Dance and Movement Therapy

As the autism spectrum is very wide and effectiveness of therapies differ from person to person, parents and volunteers working in this space try many different therapies hoping to see improvements.  Even a very small change will bring smiles on their faces.  In today’s poster we will try to understand Dance and Movement Therapy.  

Dancing is something most children like.  It is fairly easier to induce persons with autism to dancing, compared to other therapies / interventions.  Dance and Movement Therapy (DMT) is the psychotherapeutic use of movement and dance to support intellectual, emotional, and motor functions of the body.  It helps individuals achieve emotional, cognitive, physical, and social integration.  

According to many papers published in International Journal of Neuroscience, DMT has been found to be very effective as a therapeutic approach for persons with autism.  DMT promotes creative expression, toleration of physical touch, maintenance of eye contact, and social engagement.  In addition, DMT has been effective in relieving symptoms of depression and anxiety and increasing positive affect, such as smiling, laughing, feeling hopeful, acceptance from self and others, and feeling strong.  DMT significantly increases serotonin and dopamine levels, the feel-good hormones.  

When Pratibha was around 12 years old, we were looking for some activity for her in addition to her “special school”.  Somehow got her into learning Bharatnatyam.  About 6 years of fairly rigorous training, Pratibha did her Bharatnatyam Arangettam.  These 6 years we saw tremendous changes in Pratibha.  In addition to dance, there was one more therapy happening with Pratibha at that time.  The children staying in our building as well as other buildings in our housing society, used to come home around 5 in the evening, and pull out Pratibha, take her down and make her play, make her talk and give her ‘unconditional love’ in abundance.  These two - dancing and socialisation with other children - together worked wonders on Pratibha.  A timid girl, with no confidence even to look into eyes of others, and hardly speaks, transformed into a ‘chatterbox’ and an extrovert.  A transformation that happened in about 8 years.  Definitely the rigorous dance training that she went through all these years must have worked on her as “Dance and Movement Therapy”, without us knowing it.   

Concluding this post with a quote “I love, I laugh, I dance, I don’t label, I don’t judge, I don’t count my chromosomes”.