Wednesday, April 12, 2017

RIGHTS: I HAVE SOMETHING TO SAY!

Limitations in communication skill is a common sign of autism; some people on the spectrum are nonverbal, some have speech but do not communicate their needs, some just have challenges expressing their thoughts in words, limiting their ability to hold a conversation. For this reason, families, friends, caregivers train themselves to think for their loved ones on the spectrum.

PHOTO CREDIT: andnextcomesl.com

As wonderful as that is, it is important to know that in order to raise an independent adult living with autism, recognize that they have a right to be heard.


I always tell the story a young chap on the autism spectrum I worked with a few years ago, who was very aggressive towards me, and showed self-injurious behaviour. He would bite his wrist often, and he would attack me by jumping on me and squeezing me with his strong bones (somehow children with autism have very strong bones and plenty strength). Everybody would ask me if he wanted to kill me, but I would insist that he had something to say. It turned out that he was trying to say that he was hungry. By observing the behaviour, we recognized what he was trying to say. We taught him to ask for food through sign language, and because he was echolalic, he picked up on saying “I want to eat”. His behaviour definitely improved, and his speech improved as well.

Another little girl I worked with had always thrown a tantrum in school, and the teacher had no clue how to stop the behaviour. When I started working with her in school, I introduced pictures and Makaton sign language to her, and she picked up the sign language faster than the pictures. One day, while her teacher drank tea at her desk during break time, this little girl walked up to her and signed “drink”. What a joy to behold.

Different children respond differently in communication skill development, but one thing is sure, they all have something to say. They have a RIGHT TO BE HEARD.
Temple Grandin quote courtesy pioneeringautism.com


Being on the autism spectrum can be hard for some people, and on the parents, but it is our duty as parents and professionals working with them to empower them by giving them an avenue to be heard. Behaviour they say is communication, but we cannot always assume what the behaviour is saying. It is therefore important to start as early as possible to give a voice to our children on the autism spectrum.
Photo credit: here


Many parents discourage the use of Augmentative and Alternative Communication (AAC) for their children who are nonverbal or not yet verbal, because they are afraid that the child may then not find a need to “talk” (read about AAC here). But in my experience, I have seen more children develop speech after starting with AAC, and I have seen the nonverbal children being empowered because they have been given an opportunity to express themselves.

One communication aid may work for one child, and may not work for another, but as parents and therapists, we should not give up till we find what works. I usually advice to try different methods, so I use pictures and sign language, while definitely encouraging speech. I have also used speech apps on my phone before, although mostly for encouraging language. I find the children picking what works for them, and I build on it.

If I did not know when I started my autism journey that children with autism have something to say, in the last 7 years I have experienced it.

Having something to say may not just be “I want…”, it might be I don’t like this, I don’t want to go, I want to go out, the noise here is too much for me, this dress is disturbing my skin, the crowd is too much for me to handle, I don’t like my teacher. It could simply be “I love you”, this one is always a pleasure to hear or to read, or to infer based on the child’s behaviour. Whatever the child is trying to say, it is important to empower them as early as we can.


In achieving self-determination and autonomy in individuals living with autism, remember people on the autism spectrum have a RIGHT TO BE HEARD.