Lisha's Story

Lisha's Story Written by: Maren Vance

Our story begins in China when we adopted Lisha at 16 months old. I arrived prepared to speak Mandarin Chinese to her to ease the transition. As far as we knew, we were about to meet a little girl with a cleft lip and palate and that was the extent of her needs. We quickly discovered that her needs ran much deeper. She was not sitting up like other children her age and could only speak one approximation of a word that we determined sounded closest to the Chinese word for “hungry”. She was struggling to drink from a bottle and had no interest in solid foods. She did not have a diagnosis regarding her development, but we knew she was very different from other children her age.

We suspected autism was part of her story, but it would be a couple more years before that could be confirmed. In the meantime, we continued to speak Mandarin, sing Chinese lullabies to her, and patiently work with her to learn to sit up, crawl, walk, and feed herself. Typical growth milestones came and went with very little change in her abilities or development. Eventually, the word approximation for “hungry” faded and “Ahh” became the only sound she could utter. 

After a year of living and working together, we knew it was time to drop Mandarin and pick up another means of communicating with Lisha. We introduced her to a few simple ASL signs and were delighted at how quickly she took to them. Her frustration with us seemed to diminish as her signing vocabulary increased. She could tell us when she was hungry and what she wanted to eat.

In the years that followed, Lisha received her diagnosis of non-verbal autism and global delay. She started attending speech therapy weekly to work on expanding the sounds she could make and picture cards were introduced in hopes that she could communicate by pointing to pictures. However, sounds proved to be more challenging than ever and pointing was equally difficult. While these two means of communicating continued to evade her, ASL rose to the top as her preferred choice of communication and we followed her lead. We were fortunate to have an open minded speech therapy clinic that matched us with a therapist on staff that knew some sign language. Sign language slowly became more of the focus during our sessions while we dabbled with the other modes of communication just to keep her options open. 

At 13 years old now, Lisha is still non-speaking, but she is not silent. She has developed the ability to point and she occasionally chooses to communicate using a program on her iPad, but it is not her preferred method of communication. Her primary expressive and receptive language is ASL. It speaks to her heart and calms her senses and has become a lifeline for her. During times of dysregulation, her ability to receive communication visually is much better than her auditory reception. There is no doubt that ASL is her heart language.

The benefits of ASL in Lisha’s life are undeniable. She is never without her hands, so communication is available to her at all times without the need for an external device. We have introduced Lisha to many different deaf and hearing individuals in our community who sign. This has enriched her life as well as ours as we have made connections with people we would never have otherwise encountered. Despite the challenges that being autistic has placed in Lisha’s life, the introduction to ASL and the Deaf community has been one of the biggest blessings.

Despite the obvious need for ASL in Lisha’s life, it has proven to be very difficult to find support for her on this learning path. Schools are typically reluctant to provide an interpreter unless a child is deaf. This is often because schools are understaffed and don’t have enough interpreters for the deaf children who certainly deserve to take priority. I would like to see an abundance of interpreters to make this struggle a thing of the past for the deaf community as well as the community of nonspeakers. Similarly, there are a number of government funded early intervention services that are available to parents of deaf children, but are not available to parents of non-speaking children. The typical thought in mainstream America is that, if a child is hearing, they should be encouraged to operate in the hearing world. This does not take into consideration the fact that hearing people who have trouble with auditory processing may still be culturally Deaf. 

I have been pleased to meet several deaf people in our community who share the opinion that non-speaking autistic people should have access to ASL;  however, it does not change the fact that the services remain difficult to come by. Our family has compensated for this by choosing to learn sign language as a family. hiring respite care providers who know ASL, and by taking our daughter to concerts, church services, and other local events that have interpreters to expose our daughter to as much ASL as possible. In the Deaf community, it is widely believed that a child needs to be exposed to fluent signers to truly develop their ability to use ASL skillfully. My question is, how do we make this level of teaching available to non-speaking children who have chosen ASL as their primary means of communication?

The Deaf community has my deepest respect as they know all too well how hard of an uphill climb it has been to attain the level of respect that they currently have gained in America. Their fight for respect and equal access is far from over, but the days of deaf children being punished for signing or having to lip read to access an education are fading into the past. They are now building upon the successes of the past. Consequently, no one is better suited to understand the struggle that autistic non-speaking ASL users are now facing as they start from square one in seeking respect and support for their communication choice. My dream is that we could join forces and further each other's causes so that access to communication through ASL for the deaf as well as non-speaking will become a standard rather than something one must fight to acquire.