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”.  

Autism Awareness Campaign - Horticultural Therapy

Continuing with other non-traditional therapies being practiced for persons with autism, today I am touching upon Horticulture Therapy (HT).   

Horticulture therapy makes people engaging with nature to combat anxiety, promote sensory integration and build social skills.  The critical aspect of Horticultural therapy is “people-plant connection”.  It uses plants, gardens and natural landscape to improve cognitive, physical, social, emotional and spiritual well being.  Horticulture therapy can offer cognitive and physical benefits to people with autism.

Extensive research studies were conducted in early 2000s to monitor effects of HT on mental healing, cognitive re-organisation, and training of sensory motor function.  The Functional Independence Measure (FIM) and Self-rating Depression Scale (SDS) were performed before and after the therapy sessions to assess the patients’ physical activities of daily living (ADL) and to determine the patient’s mental changes in depressive states, respectively.  Functional MRI (fMRI) during recognition tasks was also measured before and after the therapy sessions. The ADL of all patients significantly improved after the therapy sessions.  However, the depressive states in all patients did not change remarkably after the sessions.  fMRI examinations showed that the visual area, the inferior temporal area, the supplementary motor area, the sensory area, and the cerebellum in the brain were activated after the therapy sessions. These findings suggest that HT can accelerate an improvement of activities in the “visual and colour processing areas” and the “association areas” as well as the “sensory-motor areas” of the brain in the patients with cerebrovascular disorders as well as autism.  Horticultural Therapy, therefore simulates parts of brain, that are not always evoked through routine physical rehabilitation.  Results of these studies indicate effectiveness of Horticultural Therapy in improving brain functions, leading to better cognition, motor control and social skills.

For past few years Horticultural Therapy is being seriously practiced in Kerala. Thanks to the College of Agriculture, under the Kerala Agricultural University, that is spearheading this initiative.  There are similar initiatives in other part of the country also.  

Before all these developments, in 2004, I was looking for a not so common and different vocational activity for my daughter.  What I stumbled upon was Hydroponics, i.e. soil-less gardening; gardening with water as medium.  Not much resources were available at that time, and I had to do everything from scratch.  Involved Pratibha in some of the activities of hydroponics gardening (on our window sills) and I found that she liked it.  I didn’t think of it as therapeutical activity at that time.  But, I did realise the plant-people connection and its positive effects.  Now planning to seriously take up “Horticultural Therapy with indoor gardens using Hydroponics” for therapeutic benefit to developmentally disabled persons. 

An integrated approach combining mainstream therapies such as Occupational Therapy, Speech Therapy, Physical Therapy, Special Education, Psychologic Counselling with non-traditional therapies such as Music Therapy, Horticultural Therapy, Pet Therapy, Aquatic Therapy etc. are to be used in a goal-oriented intervention to see fruitful improvements in cognitive, behavioural and social aspects of persons with autism. 

I will conclude this post with a quote “Never underestimate the healing power of a quiet moment in the garden”.

Autism Awareness Campaign - Music and Autism

Many different types of therapies have been tried out by many to address overall improvements and improvements in some specific aspects of autism individuals.  Some of them are Music Therapy, Horticultural therapy, Pet Therapy etc. etc.  I would like to touch upon “Music and Autism” in today’s poster.  I have not used the term “Music Therapy” intentionally.  Based on my experience of working with music for developmentally and intellectually disabled persons, I preferred to use “Music and Autism”. 

In traditional music therapy, patients listen to different kinds of music depending on their symptoms.  In my practice, I involve the beneficiaries to play / sing music and be part of the music.  Hence I used the terminology “Music and Autism”.  

Music has many aspects. I started with rhythm as first step, and tried to align their internal rhythm to group clapping.  A research work carried out in 2013 by Helen Allen-Williams appeared in British Journal of Music Therapy, established role of rhythm in organising the internal chaos (mental and emotional) experienced by patients of dementia.  It I speculated that such chaos is often expressed through agitated behaviours, and that rhythm can be used in such instances as a means to stimulate meaningful interaction.  Results of the study showed that the use of individualised rhythmic interventions was functional as therapists noted reduced agitation, more organised physical movement and other communications, meaningful interaction and emotional reassurance.

I took cue from the above, and devised a rhythm based approach and tried it first with Pratibha.  It worked wonders.  My focus was to set Pratibha’s rhythmic sense.  This is done by a very simple exercise.  Play a musical instrument / clap, aligning beats from a metronome set to 50, 100 and 200 beats per minute.  It took many months to reach 70 to 80% alignment.  I have found this to be very powerful therapeutic method that helps in considerably improving the fundamental parameters such as attention span, observation skill and responsiveness, leading to overall improvements in cognitive and quite a few behavioural development.  For this kind of “active music intervention” to be helpful, the person has to spend good amount of time (at least half an hour to one hour) every day for few months.  Tried to propagate with few parents.  As ‘finding time’ by parents to do this was difficult.  A therapist doing it for half to one hour a week will have only minimum impact.

I have also devised and tried many brain gym exercises through music (to play on instrument), where we force improved communication between the left and right sides of the brain leading to higher level reasoning such as critical thinking, problem solving, auditory organisation and more.  Have seen this working well. 

Traditional music therapy is “passive”, while what I have been attempting is “active”, where the ‘differently abled person’ becomes part of music by clapping to the rhythm, playing an instrument or singing.  I strongly believe that Music can “heal” developmental and intellectual disabilities.  That needs good investment of time and efforts from parents / therapists, on a daily basis.

Autism Awareness Campaign - Brain Gym

Many traditional therapies such as behavioural therapies, occupational therapies, speech therapies, special education etc. were being extensively used to address different aspects of an autistic individual.  People have tried some non-conventional approaches also, which continue to give surprising results.  One such approach is Brain Gym.  My today’s poster is on Brain Gym, as I think, it has a role to play in helping autistic persons in addressing some critical issues.

We have tried brain gym with Pratibha and found good improvements in some coordination, learning and behavioural aspects.

In Brain Gym programs, children repeat certain simple movements such as crawling, yawning, making symbols in the air / on the wall, and drinking water, which are intended to “integrate”, “repattern”, and increase blood flow to the brain.  One of the underlying ideas is that the exercises are meant to ‘balance’ the brain hemispheres so the two “sides” work together better; there is also a notion of integrating the “top” parts of the brain with the “lower” parts of the brain to integrate thought and emotion, as well as integrating visual, auditory and motor skills.  

Brain Gym concept was developed in 1970s by Paul and Gail Dennison, and it seems to be based on neuroscience.  They called their approach “educational kinesthesiology”.  It was not developed for developmentally or intellectually challenged children, but for general child development.  But, many educators, therapists and professionals found it to be very useful for persons with autism.

Pratibha was unable to copy and draw diagonals in a rectangle correctly.  Whenever she copies a “left-to-right” diagonal in a rectangle, she will invariably copy it as “right-to-left” (mirror image).  Such characteristics were seen in spelling patterns also.  This continued for many years.  After practicing Brain Gym for few months, we could see this changing and she was able to understand the orientation of diagonals and copy them correctly.  Also, her attention to details improved.  These could only be few visible indications.  Quite a few other changes must have come resulting in improvements in other faculties too.  I don’t think, we monitored each and every change, which is humanly impossible.  Yes, Brain Gym did help her. 

Remembering a quote by author Coelho, “Autism is part of my child, it’s not everything she is. My child is so much more than a diagnosis.”