Simone Horrocks
Many children on the autism spectrum first come to the attention of a speech language therapist because of late developing speech. Auckland-based speech language therapist Simone Horrocks offers her perspective.
THE FIVE PRINCIPLES that underpin Te Whāriki, the Ministry of Education’s Early Childhood Curriculum are: Wellbeing Mana autua, Belonging Mana whenua, Contribution Mana tangata, Exploration Mana aotūroa, and Communication Mana reo (MOE, 2017).
Together they form a powerful touchstone that is worth revisiting time and again over the course of a person’s development and have the potential to form a strong foundation in anyone’s life.
Associated goals and learning outcomes for the “communication” strand include: Developing verbal and non-verbal skills for a range of purposes; enjoying hearing stories and retelling and creating them; recognising print symbols and mathematical concepts and using them with enjoyment, meaning and purpose; expressing feelings and ideas using a range of materials and modes; and discovering different ways to be creative and expressive (MOE, 2017).
These early communication goals underpin almost every aspect of our academic and social development. But communication cannot happen without connection.
Talking or signing alone in a room may be “speech” but unless the message is received, understood, and acknowledged by another, communication has not taken place. With connection comes trust which in turn builds confidence. Confident communicators are more able to express themselves and share what they enjoy and are interested in. An increasing body of scientific evidence tells us we learn better, and retain our learning better, when in a positive frame of mind. Being understood and feeling accepted by others means that students are also more likely to share problems and needs earlier (Diamond, 2014; Dornyei & Ushioda, 2011).
As a wide range of complex issues related to communication and social interaction are a core diagnostic feature of Autism Spectrum Disorders (ASD), speech and language therapists (SLTs) are uniquely placed to offer support and advice.
So what is speech and language therapy and how can it help?
Means, method, and motivation …
Most people’s understanding of speech and language therapy is that it involves “fixing” unclear speech. While this is one area of an SLT’s practice, they are also trained to work with communication difficulties in the broadest sense, including all the ways we get our message across and understand others.
For example this might include working with children who have late developing speech or language; people of all ages who experience times when they become dysfluent (stutter) or have difficulty getting the words out (selective mutism); find it hard to join in with social conversation; respond by repeating what others say (echolalia); use a lot of learned phrases or “scripts” (stereotypical language); or have difficulties understanding humour or abstract language.
Illustration by Lucas Flynn
SLTs also recognise the ways in which acquired disorders, neurological conditions, or differences in a person’s cognitive or thinking skills can cause more subtle breakdowns in communication. For example this might include difficulties with planning and organising, understanding time, identifying and expressing thoughts and emotions, managing impulsive behaviour, “reading” body language, or understanding the intentions of others.
And because language learning takes place in a social and cultural context, the work of an SLT is also about supporting inclusion, enabling participation, and creating social opportunities, which may involve education, training, and coaching others in a variety of settings.
Whether a person is verbal or non-verbal, SLTs are specialised in creating a profile of a person’s communicative strengths, skills and abilities, which includes assessment of comprehension, or what a child or young person understands.
Many children on the autism spectrum first come to the attention of an SLT because of late developing speech. While most of those children will go on to start using spoken words, some will not. Estimates vary, but it is thought between 25-40% of people diagnosed with ASD do not go on to develop functional language (Beukelman & Mirenda, 2013; MOHE, 2016).
It is important to remember that while a non-verbal person may not use speech, this does not mean they do not have the ability to communicate. Every single human being has the ability to communicate and we are all sending messages to others all the time. This could be anything from a reflexive shiver to communicate discomfort, a smile to indicate pleasure, use of eye gaze or an intentional blink to signal “yes” or “no”, to a gesture, a drawing or a written word.
Advising, assessing, and coaching those who may benefit from alternative or augmentative forms of communication – known as “AAC” or assistive technology – is another area of an SLTs expertise. AAC could include any of the forms of communication mentioned above as well as vocabulary systems (paper or electronic) that use words; picture symbols; and/or text to speech software.
It is natural to think that introducing alternative forms of communication might further delay the development of speech, however research overwhelmingly shows us that use of AAC can actually aid speech and language development. In addition, early introduction of AAC has been shown to reduce frustration for both the speaker and the listener, and promote social interaction (Beukelman & Mirenda, 2013; MOHE, 2016).
One of the most powerful ways to set someone up for independence in later life is to ensure they have a method of independent communication. This is something that should be introduced at the very earliest opportunity as confidence and competency take time to develop. It is also important to know that people of any age are likely to benefit from assistive technology and it is never too late to start.
Parents should be mindful however that one particular method, known as Facilitated Communication (FC) and the closely related Rapid Prompting Method (RPM), which involves aided or assisted pointing, or “supported typing”, often with associated claims of “unlocking hidden potential and ability”, has no evidence of efficacy, and its use has been opposed by the New Zealand Ministries of Health and Education, alongside many other professional bodies around the world (ISAAC, 2014).
It is less well known that SLTs are also able to help with swallowing disorders and difficulties with eating and drinking, including those who have sensory issues and are often labelled “fussy eaters”.
So how can I access support from a speech and language therapist?
Depending on their specialisation, most SLTs offering government funded support are employed by either The Ministry of Education, working in schools or early education; the Ministry of Health, working in hospitals or community care; or for ACC supporting rehabilitation. In some areas SLT services are also available through community providers contracted by the Ministry such as Spectrum Care, Explore, McKenzie Centre (Hamilton), and the Champion Centre (Christchurch).
Parents, caregivers, Plunket, educators, GPs, or anyone concerned about a child’s learning and development can request assistance and support by contacting the following services:
For children from birth to 5 years
Child Development Service Ministry of Health (MOH)
Early Intervention Service Ministry of Education (MOE)
Early Intervention Service teams work closely with specialists with from the Ministry of Health, to provide assessment and support, depending on your family’s needs and communication goals. Parents and caregivers can self-refer.
The (MOE) Communication Service – targeting children aged 5 to 8 years
The focus of this service is to develop the skills of the team around a child with speech, language and communication needs, to support learning and participation. Referral generally comes through a member of teaching staff but parents may also make a referral through their area co-ordinator.
The (MOE) Ongoing Resourcing Scheme (ORS) – support from 5 to 21 years
Children with “high” or “very high needs” may be eligible for support for the entire period of their schooling. Parents are advised to initiate the application process several months before schooling begins, with professional advice and reports required in support of the application.
Some SLTs may work across these services, generally with the adults who spent most time with the child or young person in the home or an educational setting. SLTs also provide training for educators, parents and caregivers, through courses such as Hanen Centre’s “More Than Words”, which supports social communication, and “Incredible Years”, which focuses on skills for managing problem behaviour.
In November 2016, The Ministry of Education announced changes to the provision of these services, with the aim of strengthening inclusion, streamlining access, and collating more individual data on which to develop more tailored and dedicated solutions. Early in 2017 a pilot scheme was launched to trial what will become National Learning Support Services, replacing what was previously known as “Special Education” (MOE, 2017b).
To learn more about LEARNING SUPPORT SERVICES and how to make referral go to: https://www.education.govt.nz/ministry-of-education/regional-ministry-contacts/learning-support-services/
For more information about CHILD DEVELOPMENT SERVICES go to: https://www.whaikaha.govt.nz/support-and-services/specific-disability-services/child-development-services
For more information about INCLUSIVE EDUCATION including excellent resources and whole class strategies for supporting communication and language development go to: http://inclusive.tki.org.nz/guides/autism-spectrum-disorder-asd-and-learning/
Private practitioners
Alongside funded services, there are many SLTs working in private practice. For more information about how to find an SLT in your area go to the New Zealand Speech-language Therapists’ Association website: https://speechtherapy.org.nz/find-a-therapist/
SLTs specialise in many different areas of practice, so as with any professional, check that anyone you engage has specialist knowledge and training in ASD.
University clinics
Canterbury University, The University of Auckland, and Massey University Auckland campus all offer Bachelors and/or post-graduate training for SLTs. Services are available to the public in their University clinics, provided by students working under expert supervision. Services may be free or significantly less than a private practitioner, making this is a good option for families who don’t meet criteria for funded support. For more information go to:
Canterbury University Speech & Hearing Clinics
https://www.canterbury.ac.nz/science/clinics/speech-and-hearing-clinic/
The University of Auckland Speech & Language Teaching Clinics
Massey University Speech Therapy Clinic
ActivEating
Massey University also offer a special programme based at their Speech Therapy Clinic for children and families managing difficulties with eating and drinking. It is run by one of the clinical educators who is also a NZSTA Expert Advisor for Paediatric Feeding and Swallowing. For more information about ActivEating, including a link to a recent documentary about their work, “The Secret Lives of Fussy Eaters”, go to http://www.massey.ac.nz/massey/about-massey/news/article.cfm?mnarticle_uuid=BF0DB55E-4A59-464F-BD9D-3D362EA42C9A
Talklink Trust / Wahanga Tu Korero
The TalkLink Trust hold a contract with the Ministry of Health to provide assessments for Communication Assistive Technology, to enable a person with a disability to communicate more independently and effectively. The service is available nationwide and anyone is able to refer using the form on their website. SLTs work as part of a highly specialised team, offering individualised assessment, training, and technical support. Information about funding and eligibility along with resources and news for AAC users can also be found on their website: http://www.talklink.org.nz – or on their Facebook page https://www.facebook.com/TalkLinkTrust/
Talking Trouble Aotearoa New Zealand (TTANZ)
TTANZ is focussed on the speech, language and communication needs of children, adolescents and adults who are involved with care and protection, justice, mental health or behaviour services. Their team of specialised, practical and energetic speech-language therapists provide clinical services, research, professional training and consultation, and deliver court-appointed Communication Assistance roles in legal settings. TTANZ operates as a social enterprise/profit-for-purposes organisation where any profits generated after individuals carrying out work have been paid are used for pro-bono, training or research activities. Professionals, families, caregivers and youth can self-refer. For more information and contact details go to: http://talkingtroublenz.org
Best practice versus current realities
Communication is seen as a “high-priority learning area”, for children and young people with ASD. The New Zealand Autism Spectrum Disorder Guideline (2016), and best practice guidelines internationally, state that SLTs should be involved in the diagnosis and assessment of ASD; communication goals should be included in individual plans for all children and young people with ASD; with assessment and intervention suggestions provided at a minimum of once a year by an SLT, and more often in early childhood (ASHA, 2017a; MOHE, 2016; RCSLT, 2015).
As the support needs of a person with autism are broad and varied, to ensure potential is reached and inclusion is achieved, collaboration is key. SLTs need to be seen as an integral member of any team working with, and alongside, a person with speech, language or communication needs. And as autism is something a person grows with, not out of, this support should be available as needed throughout a person’s lifetime.
Currently in New Zealand, government provided communication support services are based on need not diagnosis, but in practice we are seeing that many children and adults with ASD are not meeting the criteria for funding. Due to operational and service delivery issues, we are hearing reports of families experiencing long waiting lists and inconsistent services, and a call for more training and support in schools (ESC, 2016; Sayers, 2016). Distressingly, there are also an increasing number of reports of students with autism being denied access to education as a result of “challenging behaviour” (Cooke, 2017; Kershaw, 2017). And many adults on the autism spectrum have described how exclusion, isolation, and the resulting longing for intimacy contributes to low self-esteem, anxiety, and depression (Howlin et al., 2015; Muller et al., 2008).
In 2016, in along with over 400 parents, caregivers, advocates and professional organisations, the New Zealand Speech Language Therapy Association (NZSTA) contributed submissions to a report by the Education and Science Committee (2016) into the delivery of education for students with dyslexia, dyspraxia, and autism spectrum disorders. Recommendations presented to the New Zealand House of Representatives include calls for better information and access to services; more consistent provision; clearer pathways; and increased funding to support students with ASD from early years, right through into tertiary study and beyond (ESC, 2016).
Challenging behaviour is very often a natural response to an intolerable situation. When a person is in crisis they are far less likely to be able to express their needs, and if they don’t already have access to effective communication methods, and relationships with people they trust and connect with, they are unlikely to do so.
The space between the early identification of support needs and “challenging behaviour” is one we all need to engage with.
Relationships – and strong lines of communication – need to be established over time, and through shared positive experiences, and not just as a last resort.
Means, method, motivation … and opportunity.
Developing language skills, competence, and confidence as a communicator depends on having rich and varied opportunities to engage in motivated and meaningful social interaction in everyday life.
No one is born with these skills. If we return to those powerful bedrock goals outlined in the Early Education Curriculum Te Whāriki, we see that developing capability comes through experience, discovery and use – and most importantly of all – “over time with guidance and encouragement” (MOE, 2017a, p. 1). It is important therefore for us all to notice not just what a person has still to learn but what they are already doing and most importantly of all what they initiate themselves.
This could be as subtle as where a person directs their gaze; whether they orientate their body towards or away from something; what they reach for or discard; what they collect, share, write, talk about, choose, or make.
When we initiate something independently, we are communicating something about what motivates us, and the things that motivate us, are opportunities for connection.
But communication is a two way street and the way we respond matters too. By slowing down, observing, listening – and then by acknowledging what we have seen or heard – we create a connection. Resisting the urge to then fill a “silence”, talk for someone, or take the lead in guiding an exchange, demonstrates respect for that connection, and shifts the power back to our communication partner.
Noticing, acknowledging, and then creating a space for a person’s response may seem fundamental, but it actually takes practice and sometimes patience, and there is no more powerful way of maintaining that connection, and letting a person know that you care about what they have to share.
And a final word for students and young people on the autism spectrum …
Remember the people you work, play, and learn with, may not know as much about autism as you do. And even if they do, they don’t know you, the way you know yourself. So remember to share your thoughts, experiences, interests, likes and dislikes – in any way you can. Advocate for yourself. Persevere until you know you have been heard and understood. Your message is important. Keep the lines of communication open.
Simone Horrocks (BSLT Massey University) is an NZSTA registered speech language therapist working in private practice providing strength based support to individuals and families on the autism spectrum. She has also worked as a teacher aide in Special Education and as a volunteer buddy to families with special needs. The views expressed in this article are her own.
References
American Speech-Language-Hearing Association [ASHA]. (2017a). Autism. Roles and responsibilities. Retrieved from https://www.asha.org/PRPSpecificTopic.aspx?folderid=8589935303§ion=Roles_and_Responsibilities
American Speech-Language-Hearing Association [ASHA]. (2017b). Position statement. Facilitated communication. Retrieved from https://www.asha.org/policy/PS1995-00089/
Beukelman. D. R. & Mirenda, P. (2013). Augmentative & alternative communication: Supporting children & adults with complex communication needs (4th ed.). Baltimore, MD: Paul H. Brookes Publishing Co.
Cooke, M. (2017, October 10). Kids excluded from school ‘crying for help’. Radio New Zealand. Retrieved from http://www.radionz.co.nz/national/programmes/checkpoint/audio/2018617358/kids-excluded-from-school-crying-for-help
Dornyei, Z. & Ushioda, E. (2011). Teaching and researching motivation (2nd ed.). Harlow, United Kingdom: Pearson Education Ltd.
Diamond, A. (2014). Want to optimize executive functions and academic outcomes?
Simple, just nourish the human spirit. In P. D. Zelato & M. D. Sera (Eds.), Minnesota symposium of child psychology. Developing cognitive control processes: Mechanisms, implications, and interventions (Vol. 37, pp. 205-230). Retrieved from http://www.devcogneuro.com/Publications/adele_minnesota_symposia_chapter_2014.pdf?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=9421921&query_hl=4&itool=pubmed_DocSum
Education and Science Committee [ESC]. (2016). Inquiry into the identification and support for students with the significant challenges of dyslexia, dyspraxia, and autism spectrum disorders in primary and secondary schools: Report of the Education and Science Committee presented to the House of Representatives. Retrieved from https://www.parliament.nz/resource/en-NZ/51DBSCH_SCR71769_1/cd88907f3c87d07b8b1db046417ed1e43fcd3e85
Howlin, P., Arciuli, J., Begeer, S., Brock, J., Clarke, K., Costley, D., … Einfield, S. (2015).
Research on adults with autism spectrum disorder: Roundtable report. Journal of
Intellectual & Developmental Disability, 40(4), 388-393.
International Society for Augmentative and Alternative Communication [ISAAC]. (2014). ISAAC position statement on Facilitated Communication. Augmentative and Alternative communication, 30(4), 357-358. Retrieved from http://www.tandfonline.com
Kershaw, A. (2017, September 14). ‘Worrying rise’ in number of children with autism being expelled or suspended from school. Independent. Retrieved from http://www.independent.co.uk/news/education/education-news/autism-expulsion-rate-rise-school-pupils-students-department-education-asd-a7946701.html
Ministry of Education [MOE]. (2017a). Principles, strands, goals and learning outcomes. Retrieved from https://tewhariki.tki.org.nz/
Ministry of Education [MOE]. (2017b). Learning support (previously special education) update. Retrieved from https://www.education.govt.nz/ministry-of-education/specific-initiatives/learning-support/
Ministries of Health and Education [MOHE]. (2016). The New Zealand autism spectrum disorder guideline (2nd ed.). Wellington, New Zealand: The Ministry of Health.
Muller, E., Schuler, A., & Yates, G. B. (2008). Social challenges and supports from the perspectives of individuals with Asperger syndrome and other autism spectrum disabilities. Autism, 12(2), 173-190.
Royal College of Speech & Language Therapists [RCSLT] (2015). Autism guidelines and supporting resources. Retreived from http://www.rcslt.org/clinical_resources/autism/guidelines_and_supporting_resources
Sayers, T. (2016, September 30). NZ Special-needs Education at ‘crisis point’. Stuff. Retrieved from http://www.stuff.co.nz/stuff-nation/assignments/share-your-news-and-views/16071436/NZ-special-needs-education-at-crisis-point
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RESOURCES
There are lot of really good resources for anyone looking for ideas and strategies to support communication and language development, and the websites included in this article will lead you to many of them, but if I could choose only two to get the conversation started, it would be these:
SPECIAL BOOKS BY SPECIAL KIDS
This fantastic personal project is both an accessible educational resource and a celebration of all about different ways people get their message across. Its founder, Chris Ulmer, has a background in media and communications and teaching:
“This journey started when I was a special education teacher in Florida. My classroom consisted of the same seven students for three years. Going into our final year together we started this blog. After six months we had 100,000 followers and I began receiving requests to interview people outside of my classroom. I now travel the world to interview humans of all diagnoses and backgrounds. It is my goal to create a more accepting world; one video at a time.”
Since it was founded in 2016, the SBSK Facebook page has had over 1 million views, and is fast becoming a growing global community.
Find out more about SBSK on their website: http://www.specialbooksbyspecialkids.org
on Facebook: https://www.facebook.com/specialbooksbyspecialkids/
or Instagram: https://www.instagram.com/specialbooksbyspecialkids/
UNIQUELY HUMAN: A Different Way of Seeing Autism by Barry Prizant
Simon and Schuster Paperbacks 2015 ISBN 978-1-4767-7624-8
With inspiring stories and practical advice based on forty years of real world experience and research, Dr Barry, who is a speech language pathologist (SLP) with a special interest in childhood communication disorders, challenges us to shift our perspective and understanding of autism from a “checklist of deficits” to “a unique way of being human”. Full of practical, usable strategies, the book includes chapters on difficulties with emotional regulation; supporting enthusiasms; teaching social understanding; the importance of listening; and the relationship between anxiety, control and trust.
“For a long time, we thought those with more severe disability could not learn; now we know we did not yet know how to teach.
Similarly, what we call the inability of persons to communicate may very well be our ineptness in listening.”Gunnar Dybwad (1909-2001) Advocate for the rights of persons with disabilities
This article first appeared in the Altogether Autism Journal Issue 1, 2018.