Communication Method For Autistic Children: Whose Choice?

By Yong Ennie

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This piece was first published in the Malaysian Paediatric Association’s (MPA) Newsletter – May 2022.

“I want my child to speak.”

All parents want that. As a Speech and Language Therapist (SLT), I want to help parents achieve this goal as well. However, is this a choice for us to make? It is estimated that about 25-30% of children diagnosed with autism are non-verbal or minimally verbal (NVMV) (Koegel et al. 2019; Norrelgen et al. 2015). While there is no consensus on the definition of minimally verbal in the literature, it is generally agreed that children who use less than 20 spoken words communicatively are in this group (Iacano et al. 2016; Koegel et al. 2019). Clearly, a communication method other than speech is needed to help NVMV children communicate more effectively with people in their community. This form of communication is known as Augmentative and Alternative Communication (AAC). To use AAC as an alternative communication means to replace speech as the main communication method. To use AAC as an augmentative communication means to use AAC in addition to speech when communicating. AAC can range from no-tech and low-tech, such as gestures, picture board and writing to high-tech, such as communication app on tablet and speech-generating device (ASHA).

Final option

Verbal communication is most often the main goal but there is limited evidence that suggest effectiveness of this approach for NVMV autistic children (Kasari et al. 2013). An EIP centre in Australia found that more than 50% of autistic children exited with similar language profile despite attending 15-25 hours of interventions for 5 days a week for an average of 14 months (Norrelgen et al. 2015). But somehow AAC is still left as the final option, only when the child clearly does not use words to communicate even after years of going through intervention. What about autistic children who are verbal? As autism is a spectrum, their communication profile is also diverse. Some verbal autistic adults continue to have the following speech characteristics, as outlined by Zisk and Dalton (2019):

• Intermittent speech – can speak sometimes but not always

• Unreliable speech – may say things that do not match their preference or intended meaning

• Insufficient speech – can speak orally and accurately but not completely to meet their needs

Communicate effectively

“Using AAC as a last resort when all else fails can increase the potential for learned helplessness, challenging behaviour, and missed learning opportunities” (Lacono, Trembath & Erikson, 2016, p.2358).

Using a multimodality approach that focuses on strength and needs profile should be practised, such as providing visual support so that they can obtain structured and predictable information (Zimmerman, 2017). This same approach applies to all autistic children regardless of verbal abilities. Support them with various skills so that they can choose how they can communicate best, be it using speech, pictures, typing, writing and more. Jordyn Zimmerman, a nonspeaking autistic advocate who started communicating with an iPad at 19 years old shared this,

“While I had been able to communicate using verbal language, I have always been limited to some extent.” Communication, not oral speech, should be the priority (Zisk & Dalton, 2019, p.97).

Ethics & purpose

A paper that discussed the autistic people’s perspectives on the ethics and purpose of autism interventions stated this:

Ensuring that the autistic person always has an effective and robust method of communication as the first priority. An “effective and robust” method of communication means a method that allows the person to communicate whatever they have to say, does not limit them to simple requests, allows them to create grammatically correct sentences if they choose to, and is relatively easily understood by those around them. If speech is not a reliably effective and robust method of communication for the autistic person, they should be provided with an augmentative and alternative communication (AAC) system. Effective communication also means working in the language the person is most fluent in and most comfortable using, even if this is not the dominant language of the area. Ensuring effective and robust communication for AAC users also means supporting them in learning how to use, program, and care for their systems and devices. For some autistic people, this process may take a lifetime. Support should be provided for as long as the person needs or desires it. (Autistic Self Advocacy Network, n.d., p.22)

Communication method should be the user’s choice. Not giving the choice of using AAC for an autistic person whose core difficulties are in communication is akin to prohibiting a deaf person from using sign language or hearing devices. Autism acceptance includes accepting the way they choose to communicate.

“When other students spoke their speeches; I spoke mine using my iPad. I was included and I belonged.” – Jordyn Zimmerman

Reference:

1. American Speech-Language-Hearing Association (ASHA). (n.d.). Augmentative and alternative communication (AAC). Retrieved from: https://www.asha.org/public/speech/ disorders/aac/

2. Autistic Self-Advocacy Network. (n.d.). For Whose Benefi t?: Evidence, Ethics, and Effectiveness of Autism Interventions. Retrieved from https://autisticadvocacy.org/wp-content/ uploads/2021/12/ACWP-Ethics-of-Intervention. pdf

3. Zimmerman, J. (2017). Communication as a basic right. Retrieved from: https://medium. com/@AssistiveWare/communication-as-abasic-right-231f84ef2fd0

4. Iacono, T., Trembath, D., & Erikson, S. (2016). The role of augmentative and alternative communication for children with autism: Current status and future trends. Neuropsychiatric Disease and Treatment, 12, 2349-2361.

5. Kasari, C., Brady, N., Lord., C., & Tager-Flusberg, H. (2013). Assessing the minimally verbal schoolaged child with autism spectrum disorder. Autism Research, 6, 479-493.

6. Koegel, L.K., Bryan, K.M., Su, P., Vaidya, M., Camarata, S. (2019). Intervention for non-verbal and minimally-verbal individuals with autism: A systematic review. International Journal of Pediatric Research 5(56).

7. Norrelgen, F., Fernell, E., Eriksson, M., Hedvall, A., Persson, C., Sjolin, M., & Kjellmer, L. (2015). Children with autism spectrum disorders who do not develop phrase speech in preschool years. Autism, 19(8), 934-943.

8. Rose, V., Trembath, D., Keen, D. & Paynter, J. (2016). The proportion of minimally verbal children with autism spectrum disorder in a community-based early intervention program. Journal of Intellectual Disability, 60(5), 464-77

9. Zisk, A.L., & Dalton, E. (2019). Augmentative and alternative communication for speaking autistic adults: Overview and recommendation. Autism in Adulthood, 1(2), 93-100.