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May.28.2018

Hear our voices: growing up with speech, language and communication needs

By Jane McCormack

In kindy, I was very sad for most of the time. Nobody could understand me, so they didn’t want to talk to me…Sometimes I would cry a lot…I was angry because I was being teased and nobody liked me…I didn’t like school… I couldn’t help anyone because nobody could understand my stupid words…I really hated being different…I used to think in my head a lot, but then I couldn’t answer questions. So I just daydreamed most of the time…
[K*, year 3, submission 99, Australian Senate Inquiry]

This is the life experience of a child with speech, language and communication needs; a life where words are hard to say and harder still for others to understand, where reading and writing are a challenge due to a compromised oral language system upon which such skills are based, where developing friendships is difficult as the core skill needed for socialisation (communication) is impaired, where expressing thoughts and contributing ideas to classroom discussions is restricted, not for lack of ideas, but due to one’s own capacity to express them, where misunderstandings are a way of life and feeling sad, left out and different are an everyday experience.

We might like to think that such experiences are rare; that only children with extreme communication needs feel such impacts. But the research suggests otherwise. Findings from the Sound Effects Study and the Sound Start Study, two large scale investigations of child speech disorders, conducted by researchers at Charles Sturt University indicate that the presence of speech, language and communication needs in the early childhood and school years is of greater concern to parents and teachers than almost any other area of developmental need, and that the prevalence of these concerns is high.

Speech, language and communication needs comprise a range of difficulties that affect a child’s ability to produce and/or understand spoken or written messages. Speech (articulation or phonological) disorders involve difficulty processing, planning or producing speech sounds (ranging from lisps to unintelligible speech). Language disorders can involve difficulties with vocabulary, grammar or social skills, and may be expressive (affect language production) or receptive (affect comprehension).

Why teachers and preschools need support

Analysis of data gathered in the Longitudinal Study of Australian Children, an ongoing investigation of child development in our country, indicated almost one in four parents were concerned about how their preschool child talked and made speech sounds. Analysis of data from the Sound Start Study revealed more parents were concerned about their preschool child’s talking than their motor or social-emotional development.

Also data from primary and secondary teachers in Sydney showed that “communication disorders” was the second highest area of learning need, and the area they identified as requiring the greatest learning support among children in their classes.

It is no wonder teachers recognised a need for support. The relationship between early communication difficulties and later social and academic challenges has been widely demonstrated. From delays in acquiring literacy skills, to the need for more remedial support; from difficulties making friends, to the presentation of challenging behaviours; from feelings of disconnection from school to higher rates of dropping-out – the research is clear: communication skills are essential for school success, and the impairment of such skills can have significant, negative and ongoing consequences.

What is missing in the way we have been dealing with these issues?

Unfortunately, sometimes the actual stories of those who have experienced speech and/or language disorders and the consequences of those disorders can get lost amidst the “data”, “analysis” and “research”. We can be so focused on investigating the extent of an issue in the population, or the community, that we forget to consider the extent of the issue for an individual or family.

I feel we are being lulled into a sense of having done enough by simply conducting these broad-brush investigations. There is a clear danger that research can become detached from the people who experience the very issue that we’re investigating, and this can lead to a failure in responsive action to address those people’s needs.

It is my concern that this is what happened when the Australian Senate conducted a National Inquiry in 2013 to explore the prevalence of speech, language, and communication disorders and speech pathology services in Australia. There were 305 submissions to the Inquiry from researchers, organisations, and institutions, but also from children with speech, language and communication needs, and their parents, as well as adults with a history of these needs. Their stories of living with additional communication needs are informative and insightful, at times uplifting and at other times heart-breaking.

Our research showed the views of those experiencing difficulties

My colleagues and I accessed the 288 submissions that were publicly available, and then conducted a qualitative analysis of those that had been submitted by children and adults with a history of speech, language and communication needs, to gain an understanding of their experiences.

One child in year 2 wrote, “When I was in kinder I was sad when I was talking and reading” and another in year 3 noted, “How I feel when I come to school is I feel left out in the playground”. Adults recalled similar difficulties with socialisation at school: “I can remember spending every lunch time sitting by myself because no one will even try to talk to me”.

They reflected on being misunderstood: “I may have had no speech but I was really quite smart” and “They treat me like I’m mentally challenged and incapable of doing any meaningful work and earning an income”. However, they also reflected on their own feelings of inadequacy caused by being “different”: “I always thought I was dumb”. They described their frustration at not being able to “Say anything right” or “explain what was going on in my head”, and they described the “years of holding back from showing the real you”.

Thankfully, some had received intervention, support or informal help, and this had been useful. Yet, as one adult commented “my life would have been very different if my disorder had been picked up earlier”. And this was echoed by others. There was a sense that help was not provided at times due to a lack of awareness and understanding about speech, language and communication needs. One wrote “Communication issues are invisible in the classroom unless you have a trained eye”. Thus, there was a sense of needing to support teachers to see what was “hidden”.

This year marks the 70th anniversary of the Universal Declaration of Human Rights. The right to communication (“freedom of opinion and expression”) is stipulated in Article 19 of the Declaration. Yet, for many children in Australia the right to communication is constrained by their lack of an effective means to communicate. The presence of speech, language and communication needs means those children are not free to express themselves and to be understood. Furthermore, their impaired communication leads to a constraining of other rights, such as the right to education.

The Preamble to the Universal Declaration of Human Rights states:

“… every individual and every organ of society … shall strive by teaching and education to promote respect for these rights and freedoms and…to secure their universal and effective recognition and observance …”

The research outlined here is reported in an open access paper written by my colleagues and me, and published in a special issue of the International Journal of Speech-Language Pathology dedicated to Article 19 of the UDHR. It is our hope that having investigated the prevalence of communication disorder in Australia, and sought the views of those who experience these difficulties, the Government, and indeed all of us, may now act on what has been uncovered, and listen to the voices of those who are typically the least likely to be heard.

 

Dr Jane McCormack is Adjunct Associate Professor in the School of Teacher Education at Charles Sturt University.

 

 

 

NOTE: on 29th May 2018 the Government announced its response to the inquiry recommendations. Find it here