The above quotes are by people on the Autism Spectrum.
These days, the internet is filled with articles by Self advocates about their emergence from autism. They share how the world had given up on them. Yet they emerged from the depths to lead meaningful, quality lives. There are also some who don’t speak, who are nonverbal or non-vocal.
They use other forms of communication.
“Let’s pretend you are like me”, types Philip, a 12-year-old non-vocal child. “You can’t talk, but you have a well-functioning mind and can understand people. Imagine you answer everyone who says something to you, but only you can hear it. Others hear your voice saying things you don’t necessarily mean. They think that’s all you are capable of thinking. People see your repetitive flapping or tapping and they think it serves no purpose. They don’t understand that the minute you stop, the moment is flooded with lights that hum, loud sounds that echo, kids moving too fast for you to keep up with and people trying to engage with you. It is hard on me to put my stimming away, but I try. You can’t talk but you have a well functioning mind and can understand people.”
These words jump out at me. I have experienced this with my own students at SAI Connections.
Yes, some of them are non vocal. But this certainly does not mean that they don’t understand. They all communicate and show the desire to do so. But they don’t use words.
Over years, their parents have worked very hard with them to develop the following communication foundations:
1. Responding to people around
2. Awareness of their environment and understanding situations happening around them
3. Sharing emotions: They laugh, they joke, and hang out with their parents. And they don’t avert their gaze while doing so.
4. Using signs, gestures and facial expressions
5. The best part is that they are motivated to communicate
Speech is not equivalent to communication.
All my students have a common ASD diagnosis. And yet, each of them has a different style of learning.
Prasad, for example, is a sight reader. At the supermarket, he picks items once he sees them written. He can also type words.
Rishi reads and copies words and sentences. He is incredible with pictures and the iPad. In fact, he collects newspaper inserts of different restaurants and menus. When the family goes out, he pulls out the one with the cuisine that he’d like to eat!
Tanay is motivated to write and type. He uses gestures and signs and his facial expressions are very clear too. Shashank enjoys the iPad. He plays several games on it.
Why do I want to push further with these guys?
Because I know that there is a lot that they’d like to say. We see only the tip of the iceberg.
Can you imagine wanting to say something and not being able to say it? These children go through this every minute!
It’s high time to move one notch up with their communication.
They must have a voice.
Sometimes, we stare for so long at a door that is closed that we fail to see others that are open.
Here’s what I’m saying: If you’ve tried to develop speech for many years, and if it has not taken off, it’s time to look at other forms of Augmentative communication.
Augmentative and alternative communication (AAC) is an umbrella term that encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language.
AAC devices are used frequently in the West. It’s high time for our kids to benefit from these as well.
For starters, here is how you can strengthen your child’s communication
1. Build up the relationship aspect so that you create communicative intent and motivation.
2. If you child has good vocal skills, stick with speech as the means to communicate.
3. If not, read on. The remainder of this post will help you figure out an alternative way to communicate.
Depending on your child and his specific set of skills, you have options. Sign language, PECS, Communication boards, Augmentative Communication devices, iPads/tablets, typing etc.
How would you decide which is the best fit for your child?
Take a pen and paper and make notes of the answers to the questions below. They will help you tremendously.
Does your child make sounds, say words? Do you have a ball park figure? Make a list of all sounds and words.
Are the motor abilities at par with other children of the same age? You may need somebody’s help to assess this. Check out the list below. An occupational or physical therapist will be able to help with this.
How good is your child with imitations? Make a list of actions that he can imitate.
This will prove handy if sign language is chosen as an alternative.
Is your child able to track moving objects? What does ‘attention-shifting’ look like? How well does he scan the environment?
Do you find your child looking at pictures to study them? Does he like looking at pictures in a book? Can he pick out a picture in an array of them?
This will explain if we can look at building communication through the Picture Exchange System or in working with a tablet.
Does your child read? Does he sight read or does he read phonetically? Some children look at the whole word and read it. Others read by sounding the word out.
I work with a few students who possess an amazing ability to read. One of them was reading even before he said his first word. Having such an ability opens up several avenues.
The iPad or other tablets, if used well, can be a boon for our students. There are many games and applications that can be down loaded and are beneficial for them.
I was talking to a mother yesterday, who was all in praise of WhatsApp. She said that the back and forth messaging had really helped her teenager to move ahead with communication without feeling awkward.
Does your child display aptitude in typing? Can he type words or sentences? This is a great way for them to let us know what they want or to share their thoughts with us.
Does your child display good writing skills? If yes, it is an encouraging sign.
Many years ago I met a teenage girl who would write out messages. Mohit was having a tough time during his horse riding session. In fact, he had a meltdown. This girl sent me a note saying that I should seek out a good doctor as she felt that Mohit had medical issues. She was non vocal and on the Spectrum.
Take time to think about each of these areas. Make sure you note down your findings. Share these with your specialists. This will be a tremendous help for them to streamline your child’s program.
Over the years, I’ve realized that there is power in collaboration. We cannot function as individual islands.
There are also other specialists in the field who can guide you.
I find myself reaching out to the following people and I wanted to share my list with you.
Pediatricians, followed by the other specialists are at the front line of services. All these respected doctors are those that I have interacted with and always come away with solutions:
1. Dr Vrajesh Udani
Dr Udani can be contacted at 022-24447216 / 206 and emailed on email@example.com
2. Dr Rashid Merchant
Dr Merchant is a pediatrician with 50 years of expertise behind him. He may be the first point of contact. He can recommend further investigations.
Dr Merchant practices at Nanavati Hospital. He can be contacted at +91-9821111959 and emailed on firstname.lastname@example.org.
3. Dr Anaita Hegde
Dr Hegde is a renowned pediatric neurologist in the city. She has been in the field for 15 years. She brings a rich repertoire of knowledge to her patients.
She can be reached at 106 Doctor House, opposite Jaslok hospital. Phone : 91-223517883
4. Ummeed Child Development
This is one of the first child development centers established in Mumbai, offering a wide range of services in the field of developmental disability.
Dr Vibha Krishnamurthy is the Founder of Ummeed Child Development Center. You can contact the team on 022-65528310 or email email@example.com.
5. Dr Neeta Naik
Dr Naik is an experienced Pediatric Neurologist. She is the Founder of EN1 Neuro. She can be contacted at EN1 Neuro on 26549915/16 and emailed on firstname.lastname@example.org.
6. Dr Santosh Kondekar
Dr Kondekar is a well known pediatrician and neurologist. He practices at Shushrusha Hospital in Dadar.
He can be reached at +91-9969405747 and emailed at email@example.com.
Here are my esteemed friends who have been providing services in the area of Speech and Language and Augmentative Communication since a number of years.
1. Dinaz Wadia
Dinaz is a well known and well respected ASLP (Audiologist/ Speech Language Pathologist) with 40 years of experience behind her. She is the founder of DISHA.
Dinaz can be reached at 022-26602605, 9619988937 and emailed at firstname.lastname@example.org / email@example.com
2. Bala Sriram
Bala is a dynamic ASLP. She has more than 40 years of experience behind her, having worked both in India and the US.
Bala can be reached at +91-9920171115 or emailed at firstname.lastname@example.org
3. Asha Kumar
Asha is a well known and experienced ASLP. She has been in the field for 40 years. We’re lucky to have her as our Speech and Language consultant at SAI Connections.
Asha can be reached at +91-9819126338 and emailed on email@example.com.
4. Vickram Crishna
Vickram has a back ground in technology and is an AAC specialist.
He can be reached at +91-9892936545 and emailed on firstname.lastname@example.org.
5. Lalitha Nagarajan
Lalita is well versed with the AVAZ AAC device. She is the ‘AVAZ specialist.’
You can contact her at +91-9600073900 or email her on email@example.com.
Occupational Therapists and physical therapists are integral to assessing and providing rehabilitative services with regards to motor abilities.
1. Jyothika Bijlani
Jyothika Bijlani is an Occupational Child Developmental Therapist with a huge repertoire of knowledge and experience. She is a consultant at Kohinoor Hospital and at EN1 Neuro.
Jyothika can be reached at +91-9820964567 and emailed at firstname.lastname@example.org.
2. Asha Chitnis
Asha is a senior physiotherapist who is very well known in the field of CP. She is the founder of Vedanta.
Asha can be reached at 022-65042623 (Dadar) and 22-65277176 (Borivali). Email her on email@example.com.
3. Anjali Joshi
Anjali is a senior occupational therapist. She is well respected in the field of ASD and has been practicing since 1982.
She is Director at Ummeed Child Development Center.
Anjali can be reached at +91-9819049325 and emailed on firstname.lastname@example.org.
4. Saif and Shalini Bijliwala
Saif and Shalini Bijliwala are senior occupational therapists who are in charge of Ashish Foundation.
Saif can be reached at +91-9870183414 and emailed on email@example.com. Shalini can be reached at 9833186682.
These specialists look at the educational aspects and are trained to work with those with special needs.
1. Dipti Gandhi
Dipti Gandhi is a well known Special Educator and a Low Vision Specialist. She is the Founder of Muskan Foundation and has been providing services for 20 years.
Dipti can be reached at +91-9930386646 and emailed on firstname.lastname@example.org.
2. Sudha Nair
Sudha is a fabulous Special Educator who has been in the field for about 21 years.
She resides in Pune and be reached at 7875887749. Her email is Sudha_psn@hotmail.com.
You must surely have heard of my friends and fellow parents who have been guided by their own children to pursue the study of autism and provide guidance to hundreds of other parents.
1. Merry Barua
Merry has basically revolutionized the understanding of autism in this country. She is the founder of Action for Autism.
She can be reached at +91-9810225923 and emailed on email@example.com.
2. Indrani Basu
Indrani has many years of work experience with those on the Autism Spectrum. Indrani is the founder of Autism Society, West Bengal.
She can be reached at – 033-65481576 and emailed on firstname.lastname@example.org.
3. Beena Modak
Beena is the founder of Forum for Autism, Mumbai. She also supports Kshitij- a vocational center, and Forum for Autism (FFA), which is a parent support organization.
She can be reached at +91-9869458102. Email her on email@example.com.
4. Parul and Anand Kumtha
Parul and Anand are also founding members of Forum for Autism. Parul provides services at Ummeed and Anand helps at a center called The Anchorage.
Parul can be reached at +91-9819036163 and emailed on firstname.lastname@example.org. Anand can be reached at +91-9930275026 and emailed on email@example.com.
Since the past six months, something has been happening at SAI Connections.
Not a day goes by without at least one of my students walking into my office.
They walk in, check on me, and then walk out.
I see the glint in their eyes. I feel the light that they radiate.
And I hear the unasked question.
“How about giving us our voice, Kamini teacher?”
They’re reminding me of a pact that I had made with them many years ago. It’s time for me to live up to my end of the bargain.
This is my mission for 2016. It’s time for me to break out of my comfort zone. And it’s time for you to break out of yours. Feel free to share any concern or question with me. I will do my best to help you find a way forward.