Surviving this difficult time

As you all are experiencing, this is a difficult time. For children with autism in particular this period presents additional challenges (change of routine, loss of familiar people etc). I have been speaking to people (families, people with autism, special school teachers and health staff) both in UK and India about how families / carers are overcoming the challenges during this period.

I hear both positive stories of how people have overcome these challenges as well as how families are struggling. I spoke to Akshadhaa foundation in Bangalore and heard their inspiring experience of using technology to provide support and educational activities for the children who use their service.

Listen to the Akshadhaa foundation story.

I have heard how an organisation in UK has used video exercise lessons, online mindfulness sessions adapted to the needs of people with autism. They also used imaginative weekly challenges and prizes to keep service users engaged. I was impressed by their creativeness around this. Further information on this is not fully online yet but you can get a feel of this following the link below

Heroic care news

I spoke to a teacher from rural India who is leading an exceptional special school for children with a variety of disabilities. She talked about the efforts they have taken to contact families over phone, whatsapp etc. They provided instructions and then followed up the children’s progress over phone or whatsapp inspiring and motivating children to continue the work.

In spite of the above efforts, I am also aware of people with autism and their families really struggling to cope with the locked down leading to an increase in anxiety and behaviours and over reliance on medications to manage behaviours. There were also some extreme situations in India where some families had to lock up their children in a room even if it was for a short duration.

I hope that we can learn from the innovations which came out of this adversity but it is very important that we learn from the hardship as well. A society is considered developed when it is thinking of the most vulnerable members. I do hope governments and governmental organisations would consider the needs of people with autism and people who are similarly vulnerable as we continue the locked down and if we have to go down the same route in future.

Enabling the development of professional artists with autism- Sense Kaleidoscope

Children with autism are so variable in their abilities and talents. However, most of them struggle in meeting the demands of the traditional educational system. Some children with autism are luck in the sense that persuasive parents or other people around them mould the system in such a way that becomes supportive of the individual. When this happens, we get talented successful and happy adults with autism.
Unfortunately, in the majority of the cases, this does not happen and subsequently, children shut down and become reclusive, rebel and become challenging in their behaviours or underachieve their potential. In any of these situations, we lose a wonderful talent, a magnificent individual and an asset to the world we are living in.
clay work
Sense Kaleidoscope led by Akshayee Shetty who has an art background and Anima Nair who has techie background, strives to create an environment for children and adults with autism where they can achieve their true potential using art assisted by the right educational technique and technology.
I was so impressed in my visit to the centre in December 2018 by their dedication to this cause, the systematic approach to building an educational process and highly creative use of resources.
Akshayee has done a TEDxBMSCE talk on this work and her ambition. This talk is very informative.
Sense Kaleidoscope ’s aim is not only to use art as a medium for educating children (which of course they do in a number of creative ways) but also create a sustainable career for the talented artists with autism. They do this by presentation in important events like “art biennale”. There is very little efforts currently in creating a sustainable career for people with autism. A great effort by Akshayee and Anima. Please check out their Facebook page and Instagram.

Steppingstone center

Stepping stone centre believes in the potential of every child and is focused on supporting children with autism and other developmental disabilities in achieving their potential. Myself and Nasser were delighted to meet the Cheif Operating Officer of the steppingstone centre K. Amritha when I was in Bengaluru in December 2018.

Using the framework of Applied Behavioural Analysis (ABA), the centre has teachers, psychologists, occupational therapists and Speech and Language therapists to provide truly multidisciplinary support for the children. There is a strong emphasis on a multidisciplinary approach and collaborating with mainstream facilities in enabling children to achieve their potential.
Introduction to Steppingstone for a child and family start with “Early Intervention Program” which is a 6 weeks program for the child and parents focused on enabling parents with skills in supporting their children and “Individual Education Plan (IEP)” for the child. Steppingstone is focused on creating a clear pathway for the children both within the organisation as well as with their partner organisations.
They have also developed a strong academic link with Binghampton University in New York and Christ University in Bengaluru for development of training programmes and research which has to be congratulated.

Please find more information on their web site.



Resources for supporting Gifted children with autism 

Gifted children with Asperger’s syndrome: this article is very useful in identifying and responding to gifted children with Asperger’s syndrome.

GBeing gifted and have a special educational needs: an article exploring the needs of children who are gifted and talented while having special educational needs at the same time.

Paradox of giftedness and autism: information for families from the University of Iowa.

Paradox of giftedness and autism: information for professionals from the University of Iowa.

Advocating for your gifted child with autism: This is a very useful,information for understanding how the child could be supported.

Helping Gifted Children with Autistic Spectrum Conditions Succeed.

Twice Exceptional Doesn’t Have To Be Twice as Hard: Experience of a mother and her gifted daughter.

Myths about gifted children busted

Swanand foundation – nurturing gifted children, a pune based organisation providing information and support to gifted children. This organisation is not specific to children with autism though.

Mind Springs – An organisation started by Usha Pandit, a renowned educationalist. This organisation is Mumbai based.

Autism News

Autism News

A site that gives News update on autism.

Autism and beyond: the duke institute launches an app that could potentially make smart phones capable being used for diagnosing autism. It is currently available on apple app centre as part of the research in establishing the validity of the technology. It is not at a stage it could be used for diagnosis though. 

Story of  an Indian mother’s journey for her son with autism: this story I believe is one of the many examples of struggles that families have to go through but at the same a ray of hope. 

Parent led  autism therapy: A therapy for children with autism adapted so that it can be delivered by parents of children with autism was tried in India (Goa) and Pakistan by a group of researchers from University of Manchester. Prof. Jonathan Green is the lead researcher. This is the way to go.