Autism Awareness Campaign - All Campaign Posters

This post presents all the posters I created for the Autism Awareness Campaign that I have run in social media in the month of April.   

Links to the narration of each poster is given above each poster.

What is Autism?

Early signs of Autism in children

Parents in Denial Mode

Symptoms that warrant immediate evaluation

Why Early Intervention Important?

Early Intervention

Unconditional Love

Prevalence of Autism

Causes of Autism

Sensory Integration Issues

Myths and Facts - I

Myths and Facts - II

Myths and Facts - III

Normal vs Special

Obsession

Stimming

Routines and Resistance to Change

Applied Behaviour Analysis (ABA) Therapy

Brain Gym

Music and Autism

Horticultural Therapy

Dance and Movement Therapy

Brain Re-Engineering?

Autism through the life span

Conditions that accompany Autism

Measurement of Autism

Challenges of Raising an Autistic kid

State Support for Autism

Challenges in Adult Life

Conclusion

Autism Awareness Campaign - Conclusion

I am concluding the “Autism Awareness Poster Campaign” today, 30th day of the campaign.  All the major topics covered in this campaign are listed in today’s poster.  Does it cover almost everything about autism? No.  I could not cover all possible topics about autism in this 30 days campaign.  The objective of this campaign was to share knowledge and my experiences about different aspects of autism and spread awareness.   

Going forward I will create posters for some of the remaining topics. They would include Gut-Brain connection theory, Diet and Autism, Diversity and inclusion, assistive technologies, affective technologies for emotion communication, emotional intelligence (EI) and functional independence.  But not every day!  

Prevalence of developmental and intellectual disabilities in India is about 40 persons per 1000.  This includes ’15 per 1000’ for Autism, ‘1 - 2  per 1000’ for Down syndrome, ’20 per 1000’ for Intellectual Disability (formerly called Mental Retardation), and ‘3 per 1000’ for Cerebral Palsy.  They are born differently and have all rights like any other person in the world.  Isn’t it the responsibility of the civilised society to include them in all activities?  Yes, there are challenges, but we have to address these challenges and make all possible activities “inclusive”.  Be it education, work, or entertainment.  

There are organisations in which developmentally disabled individuals are recruited based on their skills and aptitude.  Recently, we (an NGO of which I am part of) were invited by an MNC to setup a cafe run by “developmentally and intellectually challenged persons”, in their prime office premise, with an objective to bring in “inclusivity”.   The cafe is working very well, with good number of employees having close interaction with the “special” persons who runs the Cafe.  This helps both sides.  The employees are experiencing the diversity and the “special” individuals are becoming part of professional organisation and adding value. 

Large number of NGOs and parents are working hard in running special schools, sheltered workshops, workplaces exclusively for autistic or developmental and intellectually disabled persons, and doing many innovative activities to spread awareness about autism.  Many are working closely with various central and state government departments to create the right laws, to ensure that the rights and freedom of “special” persons are protected and they are supported in this world, where majority of people tend to become self-centric and lethargic to differently born people.  Also, there are tens of thousands of selfless volunteers contributing to this cause.   Salutes to all of them.   Also, salute to the millions of autistic persons in the world, who are striving to live and enjoy life in a hostile kind of environment.

Here are the links to all posts of this campaign in chronological order:

What is Autism?
Early signs of Autism in children
Parents in Denial Mode
Symptoms that warrant immediate evaluation
Why Early Intervention Important?
Early Intervention
Unconditional Love
Prevalence of Autism
Causes of Autism
Sensory Integration Issues
Myths and Facts - I
Myths and Facts - II
Myths and Facts - III
Normal vs Special
Obsession
Stimming
Routines & Resistance to Change
Applied Behaviour Analysis (ABA) Therapy
Brain Gym
Music and Autism
Horticultural Therapy
Dance and Movement Therapy
Brain Re-Engineering?
Autism through the life span
Conditions that accompany Autism
Measurement of Autism
Challenges of Raising an Autistic kid
State Support for Autism
Challenges in Adult Life
Conclusion

Concluding this poster campaign with a quote “Let’s stop ‘tolerating’ or ‘accepting’ difference, as if we’re so much better for not being different in the first place.  Instead, let’s celebrate difference, because in this world it takes a lot of guts to be different.” - Kate Bornstein.  

Autism Awareness Campaign - Challenges in Adult Life

New challenges emerge as persons on autism spectrum move towards adulthood.  When neuro-typicals themselves find it difficult to manage the teenage challenges, they are much more harder for persons on the spectrum.  Three major challenges of teenage and adulthood that are strenuous for handling are managing puberty, independent / assisted living and matrimony.

Managing puberty is a huge challenge.  Most of the persons with autism will not understand the changes happening in the body and how to be comfortable with those changes.  Both boys and girls have their own challenges.  During puberty, most people start to experience sexual urges. It is normal for children to feel sexually aroused.  But for teens with autism-associated sensory issues, these new sensations can cause anxiety.  Families need help from experts and doctors at this stage to manage this effectively.  Almost all parents of persons with autism goes through this tribulations. 

In an earlier post I had indicated that when the autistic children become adults, the main worry in the minds of parents is how are they going to live, independent or assisted.  Having a “good” quality of life is what all parents would look for.  In western system, generally children start working and live independently after they cross 18 years.  Good number of autistic adults too move to community living and other shelter houses.  The agencies that run shelter houses provide care giving services too.   Many high functioning autism adults move to shelter homes and community living.  In developed / western countries state provide some level of support for such community housing and care giving.

In India we are culturally very different.  Here we want our “special” sons and daughters to stay with us.   

The National Trust Act has provisions for modalities for assisted living of adults with autism and other intellectual and developmental disabilities.  Not much push has happened in this direction. There are couple of privately run high end housing and full support facilities.  I have seen couple of initiatives by few parents supported by schools /NGOs.  They were failures.  Some builders have come up with idea of a separate block for autism and other developmentally disabled persons, along with normal housing blocks.  Parents can buy houses and stay. “Special” houses also to be bought.  Difficulty is right care giving services, vocational activities and possible work opportunities.  Because of such challenges, none of such projects have taken off, to my knowledge.

A group of parents in Kerala are working on a solution to this problem.  About 100 parents together are creating a village, with facilities for staying, training for assisted living, skill development and activities to engage and enrich the beneficiaries.  The concept is “each 100 child in the village having 100 parents”.  It is a community living concept with common kitchen and common facilities for all families.  We are also part of that project.  Expected to start operational this year.

“Getting married” and having a family for autistic adults is a dream for many parents.  I have seen few cases of marriages of autistic persons.  It is not easy for many of them to manage themselves, then managing a family together is going to be a huge challenge.  If one of the partner in such matrimony is Neuro-typical person, I think, there is a good chance of success in the married life.  Here, at least one person understands the nuances of life and “married life”.   If both are “clueless” in many real life situations and how to deal with them, it is going to be difficult.  Few mothers of autistic persons have come together and started “inclusive matrimony” site, for parents to search and find suitable groom / bride. 

I will conclude 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.”

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