Paper Presented in International Autism Conference Mumbai on 24th Feb 2018
Role of a Parent as a Co-Therapist in Autism Intervention
Introduction
I
am Smrithy. On completion of Post Graduation in Mathematics, I started working
as a lecturer. After marriage, I shifted to Bangalore with my husband and was
enjoying my life as a house wife. We are blessed with two children, Adhithya
who is 12 years old and studying in Class VII and Advaith, who is diagnosed
with Autism. When my son was diagnosed with Autism, I decided to do a course in
Special Education in Autism and now work as a Special Educator to assist other families
and children with Autism. I am the Special Educator, Speech Therapist,
Occupational Therapist and Sports Instructor, for my son. I created a Blog and
a YouTube channel for helping other kids and families, where I upload videos
depicting how I teach reading, writing, typing, arts and sports activities like
cycling, swimming, roller-skating, badminton, scooter board and basketball. I have
already uploaded over a hundred videos on my channel and I ensure that they are
done step-by-step, for ease of understanding for the viewer.
Autism
Autism
Spectrum Disorder(ASD) and Autism are general terms for a group of complex
disorders affecting brain development. These disorders are characterised in
varying degrees of difficulties in social interaction, verbal and nonverbal communication
and repetitive behaviours. Autism appears to have its roots in the early stages
of brain development. However, the most obvious signs and symptoms of autism
tend to emerge between 2 and 3 years of age. The term “spectrum “reflects the
wide variation in challenges and strengths possessed by each person with
autism.
Importance of Early Intervention
Early
Diagnosis and early Intervention programs are an important first step for
children with autism and those with other developmental concerns. Early
intervention services for young children span across the range of 0 to 6 years.
Early diagnosis followed by individualised early intervention can provide the best
opportunities for realising the child’s full potential.
For
example, problems with communication are a big cause of tantrums and other
difficult behaviour in children with autism. If children are unable to communicate
their needs or understand others, they express themselves or get attention through
difficult behaviour. But if they learn to communicate effectively as early as
possible, they won’t need to behave like this quite so much.
Early
intervention programs should be family centric, well-structured and based on sound
evidence. It should focus on developing attention, communication, imitation,
language and social skills.
Research Rationale
Recently
the American Academy of Paediatrics suggested that parents should play a pivotal
role in their child’s intervention. They felt that when parents used daily
routines as learning opportunities, it helped the child use his new skills in a
variety of everyday situations. Instead of merely observing therapy sessions,
parents must work along with the therapists, so that they themselves can become
therapists for their child. With guidance from the therapist, parents learn how
to help their child at home. In this way parents can modify any everyday
activity into an opportunity for communication and essentially provide therapy every
day for their child. This type of collaboration between parents and therapists
is called “parent implemented intervention”. Study reveals that “parent-implemented
autism intervention” works most effectively. A few hours of therapy each week
do not result in the kind of developmental gains for children that those
achieved by teaching the family intervention strategies do, which encourage them
to take advantage of the ‘teachable moments’ they have with their children at
home and in the community environment.
Parents-implemented
intervention provides a child with the most practical opportunities to learn
since he is learning during his everyday life, each and every day and because
he is learning new things at home with the people closest to him, learning
becomes natural, motivating and fun.
When
parents and therapists team up and collaborate this way, it ensures that a
child with Autism spectrum disorder learns from the best possible teachers - his
parents. Difficulties with language and communication are a key feature in the
discussion on autism. The major cause of stress for families dealing with their
child who has autism is due to lack of communication skills in him. For the
most part, children with autism think in images and not in words especially when
they are younger.
Methodology
Advaith
was diagnosed with Autism and ADHD at the age of 2.3 years. At that time, he
was completely nonverbal and would communicate by pulling my hand towards his
desired objects. We started ABA when he was 2.4 years old. His ABA Therapist
introduced him to sign language. As I was a co-therapist for him, I also
started practising sign language for communication, at home. After one month of
ABA, he started communicating for his needs like music, book, carry…. independently.
He started vocalising with first sounds while communicating. Thereafter, we started
to focus on words for communication. This put immense pressure on Advaith and
the result was regression of speech and incessant crying during session time.
After
eight months of ABA, Advaith stopped cooperating with his therapist and was continuously
crying. Even though they tried different techniques to keep his interest levels
up, with reinforcers, it was not helping him. So, we discontinued ABA from that
Centre and I started doing ABA at home with the help of a certified ABA therapist.
She was giving me a home program and I was working with Advaith under her
guidance. But I couldn’t continue it for a long time as Advaith was not
cooperating. Around that time, I joined a course with KPAMRC for special
education in Autism. I enrolled Advaith into Bubbles Center for Autism and I
did my practical sessions during the course at Bubbles. From Bubbles I learnt
about structured teaching method and PECS (Picture Exchange Communication System).
I
also introduced Structured teaching method and PECS at home with Advaith. I
created two picture cards of his favourite food and stuck them in front of my
kitchen wall. Within a week, he started using those two cards independently for
communicating. Then I introduced other pictures like milk, juice, music etc.
one by one. Then I created a PECS file for Advaith. At that time Advaith, was
using that file for his communication with different people and at different
places.
Then
I attended a workshop about ‘avaz’ which is an AAC app for kids with Autism. By
then, Advaith could use the iPad for watching his favourite rhymes and doing
some educational activities like matching and puzzles. I tried to start with
‘Avaz Lite’ that was a free version for seven days. I customised Avaz with real
pictures, that he could relate to easily and showed him how to communicate
using that. Advaith was very happy to hear real voices on the iPad while using
Avaz. The fact that someone was talking for him, served as motivation. After
observing his interest, we decided to buy ‘Avaz India’. After that I customised
‘Avaz India’, the same way as he was doing using PECS. I clicked pictures from
his PECS file and added them to Avaz.
In
his mind, the communication concept was clear from sign language. At present,
he uses Avaz for communicating his food requests (ordering from restaurants
also), actions like swimming, horse-riding, skating, scooter ride, cycling, for
his favourite rhymes, favourite places to go to, talking about himself
including phone number. Now everyone can understand what he is trying to
communicate. His anxiety levels reduced to a great extent, because he could express
his needs and feelings to everyone. We use Avaz not only for communication but
also for teaching number concepts, typing, objectives, prepositions and to
build language skills and comprehension. When he experiences a sensory
overload, he asks for horse-riding or scooter ride. Then I realised that those
two activities help him to calm down. Through Avaz, he is able to wish friends
and family members on special occasions and this makes him feel more connected
to them.
I
was using structured teaching method at home with Advaith. I structured his
daily activities with visual schedule with time concepts and created a fully
structured environment at home. That really helped to reduce his anxiety level,
restlessness and to build independent skills.
Advaith
was hyperactive from childhood. When he was 6 years old, I thought of using his
high energy level to teach him different sports activities. We taught him
cycling, swimming, basketball, badminton and roller-skating at home without any
trainer. This helped him to reduce his hyperactivity and improve his attention,
focus and concentration. Then I registered him for Special Olympics Bharat. In
November 2017, Advaith participated in the Roller Skating competition conducted
by Special Olympics Bharat, Karnataka and he won the Silver medal. Advaith won
gold medals in roller skating competitions held by Karnataka Disability
Department in Dec 2016 and Dec 2017.
Advaith
had great difficulties in writing and hence I taught him to type.
I
started teaching typing with Clevy keyboard, and now he is independent in using
any type of keyboards, including touch screen. Now I am training him for the
data entry and other computer skill training programs. Now he can do simple
data entry programs independently.
Advaith
likes to stim with threads and I thought of converting that obsession into a
meaningful activity. I taught him how to make jewellery using thread and beads.
We started making bracelets and then necklaces and moved to ear rings. Now he
is making, gifting and selling his jewellery. We named it as “Addu’s Little
Creations”. The amount which comes in from selling the jewellery is deposited
in his bank account. We have created a facebook page “Addu’s Little Creations”
and are exhibiting all his products in that page.
Findings
·
Avaz
helped Advaith to improve communication and social skills. It helped him to
reduce his anxiety and express his thoughts.
·
Structured
Teaching Method helped to reduce his restlessness, to make him fully occupied
at home and bring in more independence in his daily life skills.
·
Sports
helped him reduce his hyperactivity and we discovered that Advaith is extremely
good at Roller Skating. That brought about lots of appreciation which gave him
greater confidence about his skills and he started improving in all areas of
learning.
·
His
obsession with stimming using a thread, helped him to learn a skill, ‘jewellery
making’ and he is already earning an income from that.
·
Advaith
does simple data entry programs and continues with his computer skill training
programs that will help him in achieving an important vocational skill.
Conclusion
“Parent-implemented
autism intervention” works!!
Recommendations
·
Understand ASD. Accept ASD. It is a life-long challenging disorder, but
there are ways to minimize the effects and improve the quality of life of not
just your child but also yours.
·
We,
as parents would want to know what our child wants or is feeling rather than
name alphabets, sing rhymes or learn numbers.
This would help reduce behavioral challenges and improve our bonding
with our child.
·
Mother
is the best therapist and love is the best method for children with special
needs. It is very important to take guidance from experienced professionals and
parents should follow the same techniques at home. We must remember that
communication happens everywhere and not only in a classroom setting. A child
goes to therapy centres or school for a maximum of 3 to 5 hours per day and the
remaining 7 to 9 hours are spent with parents and caretakers. So, parents and
caretakers play a very important role in the development of the child’s
communication skills.
·
Professionals
are trained experts. Take their suggestions, observe how intervention is
planned and worked upon. We as parents
know our child better. So, encouraging similar strategies at home in the manner
that we think will work in a particular scenario, augments what is taught
during therapy sessions. Enrolling for therapies cannot succeed without parent professional partnership.
Empower yourself by learning how to carry out therapeutic activities at home
and co-partner intervention.
The
journey with Advaith has only started and we have a long way to go. We already
know the road to our destination.
My
sincere thanks to all professionals who helped us in this special journey.
Smrithy
Rajesh
smrithy123@gmail.com
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