One of the most prominent barriers for people who have Angelman syndrome is their lack of speech resulting in the inability to clearly communicate needs, wants, feelings and opinions.
As non-speakers, without any communication support, they are unable to enjoy the general everyday conversations that typical speakers take so for granted. Their lives inevitably become organised by others with no opportunities for their own input.
Having no speech negatively impacts their behaviours and sense of autonomy, amplifies isolation, prevents social inclusion and prevents access to a full education.
The significant speech/language impairments seen in AS may be due to:
Motor problems (low tone in oral area)
Oral structures (protruding tongue)
Oral apraxia (difficulty with motor planning)
In summary, people with Angelman Syndrome are increasingly learning how to use AAC to communicate successfully.
They need a multi-modal communication system that incorporates AAC (Augmentative and Alternative Communication)
Comprehension is much greater than output so high expectations for learning need to be maintained.
Abilities and methods vary widely, so always presume competence.
Augmenting communication involves both speech and writing, and also technology related to teaching and learning.
Frustration with communication is often the reason for negative behaviour such as pulling hair, hitting, biting. This behaviour can also be an indication of some deeper underlying issue such as pain or anxiety. (Read The Crisis in Pain Control for Children who are Complex, Non-Verbal, or Cognitively Impaired - The Complex Child.)
Combining signs and/or symbols together with other AAC methods has been
shown to be very effective for many children and adults with Angelman Syndrome.
Candidates for AAC
Individuals with Angelman syndrome DO communicate naturally in their own way by employing more than one mode of communication, eg. using sounds, gestures, posturing, and eye direction. However, they are frequently misunderstood and marginalised due to their inability to actually speak. This makes it difficult for them to build meaningful friendships or to give autonomous input into their daily live.
Though people with AS have severe to profound communication impairments and complex communication needs, their receptive language is typically more advanced than expressive language. This makes them excellent candidates for Augmentative and Alternative Communication (AAC).
Families need encouragement and support to learn about the new AAC visual language and should be advised to pursue formal AAC support as a priority. There are also many active groups on social media that cover topics on AAC.
Just like teaching a typical child to talk, the AAC learning & teaching process should ideally be interactive and fun for everyone. When parents/siblings/carers/ aides all regularly model (demonstrate) a multi-modal form of communication incorporating a combination of preferred gestures, signing, picture symbols and ideally a voice-output device, the child with AS will eventually pick it up.
Exposure to AAC modeling (Aided Language Stimulation) is vital to ensure the child is fully included in all family activities. Once a robust communication system is established at home it should be used everywhere, all the time. When a person with AS uses their communication device in a mainstream setting, they have a far better chance of being noticed, acknowledged and included.
Free ASL Core Board for International Angelman Day - kindly
provided by Tracey Campbell and the Angelman Academy.
Individuals with Angelman syndrome employ more than one mode of communication, eg. using sounds, gestures, posturing, and eye direction or eye gaze.
What is AAC?
"Augmentative and alternative communication (AAC) is an umbrella term that encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language." - Wikipedia
Children with Angelman syndrome vary greatly in the types of AAC they use, often employing more than one mode of communication.
What is Modeling/Aided Language Stimulation (ALS)?
ALS is the process of modeling AAC language in everyday settings.
The communication partner talks to the person while also pointing/selecting keywords on the person’s AAC system.
ALS does not rely purely on auditory processing
For more info on how to Start Modeling, click below.
What is Assistive
Ministry of Education
Assistive technology (AT) is specialised equipment and technology that students with additional learning needs use in class to increase or improve their ability to participate and learn.
This directory connects you to information regarding assistive technology. Further reading is essential for schools or specialist assessors who are considering applying for assistive technology to support their students.
Communication Strategies & Training Series for AS
Communication Strategies for Children and Adults with Angelman Syndrome - Mary-Louise Bertram
Communication Strategies for Children with Angelman Syndrome - By Jackie Kearns, CCC-SLP, and Douglas Henry, MD
Some Angelman Tips - Kate Ahern
NZ Sign Language (NZSL)
Makaton is a communication programme based around a core vocabulary, using speech, signs and/or symbols.
When signs are used with Makaton they are used in the order of spoken English to enable us to sign and speak at the same time. The symbols have been especially designed for Makaton.
In NZ News
A great article on the new AAC approach being initiated at Carlson School, in Auckland.
“It’s here! We’ve got it!.
Article on the Winther family. "…Paediatric neurologist at Starship children’s hospital Rakesh Patel says it’s important to encourage non-verbal forms of communication including hand and facial gestures, computer programmes and photographic mediums."
New Zealand Speech-language Therapists' Association
In this issue, our featured organisation is The Angelman Network. Ursula Cranmer talks about the Angelman Literacy Project, barriers faced in New Zealand by people with Angelman Syndrome and those who support them, and how research and resources can help remove these barriers.