Finding a voice

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The range of systems that help children without speech to communicate

Having a child with no functional speech can be difficult. It provides challenges and issues that are not always easy or straight forward to resolve, with some parents feeling support is not always readily available.

Typically, as children develop, they will start babbling by 12 months, use about 20 words by 18 months and around 50 words, plus some short two or three word phrases, by 24 months where they will understand 200 to 500 words. (source: I CAN, “Ages and Stages”).

However, not all children will follow this pattern. They may not be able to babble and then progress to speech sounds and therefore will already be well behind their peers in terms of expressive language by the age of two.

They may understand as many words as other children of the same age, but if they are not able to try out words clearly, or at all, then they do not get any active consolidation and the neural pathways for language development may be affected.

Ultimately, if they are not able to use any words clearly, they cannot communicate with their families, or anyone else in their lives, and it is not possible to gauge what level of word knowledge they actually have.

What does AAC look like?

Augmentative and alternative communication (AAC) is the term used to describe methods of communication that can add-on to or replace speech.

This can be needed as the result of physical disability, a learning disability, developmental delay, illness or an accident; whatever the reason, giving a child a method to learn to communicate, to interact with their family and peers, express their thoughts and views and to access education is vital.

AAC can include simple, no-tech systems such as gestures, facial expression and pointing at pictures, symbols or spelling boards, through to high-tech computer based “speaking” devices. AAC devices provide children and adults alike with a voice, helping those whose own natural speech is in some way impaired to the point of not being understood by others, or who have no natural speech at all.

Tech-free AAC

The single most useful thing to establish, in whatever way possible, is a consistent “yes” and “no” for individuals. This opens up vast areas of control for someone who may otherwise have very little.

I have seen children (and adults) who use variants of sign language to indicate this, or who nod or shake their head, or who smile for “yes” and stick their tongue out for “no”. It can be anything at all as long as it is consistent.

Another no-tech method that we were shown when my son was about 18 months old (he has athetoid cerebral palsy and no speech) is simply that you can “label” (verbally) each of your hands and hold them apart for the child to either point or look at. One had might be “milk” and the other “juice”, so the child can make an active choice. If the child can cope with more choice, you can label the fingers of one hand and the child can reach out and touch the selected option.

Very young children seem quite able to deal with this apparently very abstract process and therefore the hands or fingers can be whatever you need them to be, wherever you need them. This technique has been absolutely invaluable over the years and we still use it now when necessary, and he’s 19 and about to go to University.

Moving on from yes and no (which obviously are responses to someone else’s question) very young children can become active communicators by having, for example, photos of family members and everyday items put on cards so that the child can point at them, or look at them if finger or fist pointing is not possible, to indicate choice.

If they can use their hands, introducing some signs (such as Makaton, British Sign Language, baby sign, sing and sign) is a very useful addition to a child’s communication methods. Symbols from a proprietary set, with or without words alongside, can also be used in this way.

Introducing technology

Children can very quickly progress to using communication books (with pages of symbols) and then on to computer based devices which “speak” when buttons are activated, which can be by direct touch, switch scanning or eye gaze, for example, depending on what method is assessed as being best for the individual child. These devices can use symbol-based vocabulary or words and spelling. Even where symbols are used they are almost always displayed with the written word, to aid literacy development.

If, or once, a child can spell, they may well choose word prediction as their favoured method of communicating but it is entirely possible to use symbol-based systems right up to and through adulthood too, if that works best for the individual.

Literacy for AAC users is, however, not as straight forward as just learning to read and spell. This is a whole topic on its own, but in short, many people without speech report that they have no “inner voice” and so sounding out words in order to spell or read them can be very difficult and the current emphasis on synthetic phonics often does not work.

However, with the right specialist input, children who use AAC can learn to read, but some (like my son) may always have difficulties with spelling words that they cannot “sound out” for themselves, which can make word prediction entertaining, to say the least.

AAC myths

I believe there are many common myths when it comes to a child’s speech and using AAC. I’ve outlined five key ones that I’ve come across below.

Myth 1: “Oh just wait and see, they are still young…”
No, it is never really too early to start introducing alternatives to speech. If you have any concerns at all about a child’s language development, do something!

Myth 2: introducing AAC will hinder speech development 
Absolutely not; in fact, it’s quite the opposite. Having some means of communicating, even if it is very simplistic to start with, is better than having none and actually takes away some of the stress of the pressure to “speak” – a situation which can leave families and children feeling hopeless, upset and demoralised. If a child is able to develop speech, they will, and the introduction of some AAC to assist with frustration will not hinder that. Similarly, if the child does appear to have more significant speech delay or absence, it’s all the better that AAC has been introduced at an early stage.

Myth 3: a child with severe learning difficulties cannot use AAC effectively  
This is a big one, not least because if a child has never been able to speak (clearly) and may also have a physical and/or sensory impairment, how can you actually judge that they have a severe learning difficulty?  Of course, there will be some children, but not very many, who are so cognitively impaired that they are unable to reliably use any form of communication, but the vast majority of non-verbal children will, with the correct assessment, provision and support, be able to use AAC in some way.

Myth 4: “Just give them a tablet computer with symbols on”   
One size of AAC intervention certainly does not fit all and one of the most important stages is a proper multi-disciplinary assessment which looks at all aspects of the child’s dis/ability, including, crucially, hand function and dexterity, posture (especially if they are a wheelchair user), cognitive stage (though as above, this is very hard to do accurately if someone has not yet achieved reliable communication) and visual/object tracking skills and any sensory impairment. This should be accessed through a speech and language therapist attached to a local AAC service and may also involve the regional specialist centre, depending on the complexity of the child’s needs.

Myth 5: children don’t need low-tech symbol/spelling books once they have progressed to hi-tech electronic talkers
Oh yes they do! Low-tech remains a crucial back up for all the situations where hi-tech isn’t available, such as when devices’ batteries are flat, in the bath or in the car. My son still makes extensive use of a basic alphabet board, with whoever he is talking to acting as a “human word-predictor” to speed things up, but he has also had electronic talking communication aids since was at nursery school.

You’re not on your own

Parents and carers are an essential piece of the communication jigsaw for children learning to use AAC and it is really important that they are involved at all stages of assessing for and developing a child’s AAC system. But it can sometimes be hard for families to deal with the fact that their child may never have functional speech, and it is important for professionals to be sensitive to this, and not simply assume that parents are uninterested in AAC.

On the other hand, sometimes parents report that they feel excluded from the process or that they don’t really know how their child communicates at school because it has not been explained to or shared with them. There are many reasons why this happens but for a child to progress with their AAC it is vital that they have access to consistent methods of communication in all settings, wherever possible.

Often, especially in mainstream settings, a child using AAC may well be the only one in the school, and the school has probably had few if any AAC using pupils before. Similarly, the child and their family might never have met any other AAC using children and so for everyone it has the potential to be a very isolating situation.

This is why it is so important not only to get specialist speech and language and AAC support and advice into school and home as early as possible, but also to make contacts and network with others to share information, experience and skills.

There are a number of organisations, both locally and nationally, which can offer support, information and advice to AAC users and their families and those who work with them.

Further information

Jenny Herd is a parent of a 19-year-old AAC user who has completed all his education in mainstream school. She is a Trustee of the charity Communication Matters, which provides online information, regional AAC roadshows and a national conference for AAC users, family members, professionals, and suppliers and manufacturers of communication aids:
www.communicationmatters.org.uk

Jenny Herd
Author: Jenny Herd

AAC Parent and author for Communication Matters

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AAC
Parent and author for Communication Matters

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