Understanding Angelman Syndrome: A guide for parents

ByLondon Speech and Feeding
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Angelman Syndrome (AS) is a complex neurological disorder that affects development. It’s caused by a missing or functionally incorrect gene (UBE3A) on chromosome 15. While AS is rare, understanding its characteristics is crucial for parents and caregivers.

What are the key characteristics of Angelman Syndrome?

Children with AS typically exhibit a range of unique characteristics, which can include:

  • Developmental delay: Significant delays in reaching developmental milestones, such as sitting, crawling, and walking.
  • Speech impairment: Limited or absent speech. Individuals with AS may use few or no words.
  • Movement and balance issues: Difficulties with coordination, balance, and movement, sometimes causing a jerky or unsteady gait.
  • Happy demeanour: Frequent smiling, laughter, and a generally happy, excitable personality.
  • Intellectual disability: Varying degrees of intellectual disability.
  • Seizures: Seizures are common and often begin in early childhood.
  • Sleep difficulties: Disrupted sleep patterns and difficulty falling asleep.

The role of Speech and Language Therapy

Speech development and social communication is significantly affected in Angelman Syndrome, and therefore, Speech and Language Therapy plays a vital role in helping individuals with AS to communicate. As Speech and Language Therapists (SLT) we can work with the child and family support any of the following:

  • Assess communication skills: We evaluate the child’s current communication abilities, including any vocalisations, gestures, or signs they may use. With younger children we do this through play and playful social games as well as observation of a child playing and interacting with their siblings or caregivers.
  • Develop alternative communication strategies: Since spoken language may be limited, SLTs can help the child learn other ways to communicate, such as nonverbal communication, e.g
    • Gestures: use of pointing, waving and miming certain activities.
    • More formal sign language: Teaching basic signs to express needs and wants.
    • Core boards: Using pictures and symbols to represent everyday common words, actions, and feelings.
    • Augmentative and Alternative Communication (AAC) devices: Providing electronic devices that can produce speech.
  • Encourage vocalisations: When words don’t readily develop, SLTs can encourage the child to make vocalisations and sounds, as these can be a form of communication.
  • Support language development: SLTs can work on understanding of language, even if expressive language is limited.
  • Educate and support families: SLTs provide families with strategies and techniques to support their child’s communication at home.

The importance of a multidisciplinary approach

Caring for a child with Angelman Syndrome requires a team effort. A multidisciplinary approach, involving various healthcare professionals, is essential to address the diverse needs of the individual. This team may include:

  • Paediatrician: Provides overall medical care and monitors the child’s health.
  • Physiotherapist: Helps with movement, balance, and coordination.
  • Occupational therapist: Works on daily living skills, such as feeding, dressing, and self-care.
  • Speech and Language Therapist: Addresses communication and language needs.

By working together, we can provide comprehensive care, address the unique challenges of Angelman Syndrome, and help the child reach their full potential.

Conclusion

Angelman Syndrome presents unique challenges and opportunities. With early diagnosis, appropriate interventions, and a strong multidisciplinary team, children with AS can make good progress and live fulfilling, joyful lives. As Speech Therapists we delight in supporting parents in their role in advocating for their child.

Do get in touch via my contact form if you are concerned about your child’s development.

Sonja McGeachie

Highly Specialist Speech and Language Therapist

Owner of The London Speech and Feeding Practice.

Health Professions Council registered
Royal College of Speech & Language Therapists Member
Member of ASLTIP

Find a speech and language therapist for your child in London. Are you concerned about your child’s speech, feeding or communication skills and don’t know where to turn? Please contact me and we can discuss how I can help you or visit my services page.

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    I hand pick my clients to make sure that we are a good fit, and my service is bespoke: no one client gets the same treatment as another; each client is unique, usually very well-known and always highly valued. That takes time and means that in reality each client gets about 2 hours of my time, that is the actual session plus all the preparation and aftercare.

    I love this way of working and would not ever want to return to seeing tons of clients each day, not knowing any of them really well, due to high caseload numbers, staff shortages and an overload of administration.

    My way of working affords all my lovely clients the help they need to be able to feel empowered and to then support their children to make progress; when working with children they make the best progress they can make, fulfilling their potential. My lovely reviews and testimonials tell me that my clients appreciate the extra attention.

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    Seeing sounds: How visual gestures boost speech sound learning

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    • the /W/ sound: my right hand moves forward and fingers splay out showing that the lips open up at the end of the sound
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    An overview of motor planning for speech – what do we mean by that?

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    2.      Enhancing motor planning and memory:

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    The journey of speech development can be challenging, but visual gestures offer a powerful and effective tool for teaching new sounds, especially when motor planning is a factor. By providing a clear visual map, strengthening motor memory, reducing cognitive load, and fostering engagement, these gestures pave the way for clearer communication and greater confidence. If your child is struggling with speech sounds, consider talking to a Speech and Language Therapist to get guidance on how visual gestures might be incorporated into the therapy plan. Because sometimes, seeing truly is believing (and speaking!).

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    Health Professions Council registered
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    Happy Islamic family sitting on the floor
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    Speak your home language at home

    Many parents report that they worry about speaking their home language at home and instead they have been focusing on just speaking English at home. They now rarely use their home language with their child. They fear that speaking a language other than English with their child will cause further delay and hinder their progress. All parents want the best for their child and often parents fear that their child won’t fit in or will be seen as ‘different’. So we can understand why parents feel that the English language is the only one worth having.

    But the opposite is the case: it is crucial to speak in both languages freely, both at home and outside the home! Both languages will benefit your child, no matter what the delay or difficulty is. Acquiring a ‘mother tongue’ or native language is absolutely vital for children to have a good, solid linguistic grounding on which to build other languages. Bilingual children may mix languages during speaking and parents may equally mix their languages. This does not hinder language development and is a natural part of linguistic development.

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    What is far more important than the question: ‘which language should I say this in?’ Instead think: ‘let me speak freely and naturally, let me respond naturally, in good intonation and let communication flow freely to the child.’

    Speech therapy can be a crucial resource for bilingual or multilingual children and their families.

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  • Why imitation is a powerful strategy to support social communication

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    Explaining pronoun reversal: A window into gestalt language processing

    Have you noticed your child referring to themselves as ‘you’, or calling you ‘me’? This seemingly confusing mix-up of pronouns, known as pronoun reversal, often raises concerns for parents. Below I outline why your child does this and want to reassure you that it is to do with his or her unique language learning style.

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    Many children, particularly those on the autism spectrum, use a gestalt language processing approach. Unlike analytic language processors who learn individual words and build sentences, gestalt language processors learn language in whole ‘chunks’ or ‘gestalts’. Think of these gestalts as pre-packaged scripts they pick up from their environment — phrases, sentences, even snippets of songs or movie lines.

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    Imagine your child hearing ‘You want a rice cake?’ repeated frequently. They might then use this phrase to express their own desire for a rice cake, even though it doesn’t grammatically fit. So they are thinking and saying ‘You want a rice cake?’ and the meaning of this phrase is: ‘I want a rice cake’. This isn’t a sign of confusion, but a natural step in their language development. They’re working with the tools they have: the scripts they’ve acquired.

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    Instead of trying to ‘correct’ pronoun usage, our role as caregivers and speech therapists is to support the child’s natural language progression. Here’s how we can do this:

    1. Learn about their gestalt stage and run with it: In the early stages (1–3) of gestalt language development, correcting pronouns can be counterproductive. These children are still processing language as whole units, not individual words. Direct corrections can lead to frustration and hinder their natural language exploration.
    2. Patience and trust: Gestalt language processing follows a predictable, albeit sometimes non-linear, path. By understanding their current stage, we can provide targeted support. Language sampling and scoring, guided by the Natural Language Acquisition framework, help us pinpoint their stage and tailor our approach.
    3. Model language strategically: In the early stages, avoid using pronouns like ‘you’ and ‘you’re’. Instead, model language from the child’s perspective or use joint perspectives. For example, instead of ‘Are you thirsty?’, try ‘I’m thirsty!’ or ‘Let’s get some water’,

    The big picture: Language unfolds naturally

    Pronoun reversal is a stepping stone, not a stumbling block. As gestalt language processors progress, they begin to break down these gestalts into smaller units and develop their own self-generated language. This is when their understanding and use of pronouns naturally emerge.

    By shifting our perspective from ‘error correction’ to ‘developmental support’, we create a nurturing environment for these children to thrive. We empower them to navigate their unique language journey, ultimately leading to more meaningful and independent communication.

    So, to summarise:

    • Pronoun reversal is a typical characteristic of early-stage gestalt language processing.
    • Focus on modelling language from the child’s perspective or a joint perspective.
    • Avoid correcting pronouns in the early stages.
    • Trust the process and support the child’s natural language development.

    Let’s celebrate the diverse ways our children learn to communicate and empower them to find their unique voice!

    If you have any questions or would like some help with understanding your little gestalt language learner, please get in touch with me via my contact form.

    Sonja McGeachie

    Highly Specialist Speech and Language Therapist

    Owner of The London Speech and Feeding Practice.

    Health Professions Council registered
    Royal College of Speech & Language Therapists Member
    Member of ASLTIP

    Find a speech and language therapist for your child in London. Are you concerned about your child’s speech, feeding or communication skills and don’t know where to turn? Please contact me and we can discuss how I can help you or visit my services page.

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  • What is Total Communication, and why your child might need it more than just speech

    ByLondon Speech and Feeding
    Sonja smiling

    When a child’s speech is difficult to understand, it can feel overwhelming for everyone involved. As a parent, your instinct is often to focus on helping your child ‘talk properly’. And that makes complete sense. Speech is important. But here’s the key message I want to share with you:

    Speech is just one way to communicate.

    And when speech is not yet clear, not yet reliable, or not yet available, children need other ways to get their message across.

    This is where Total Communication comes in.

    What is Total Communication?

    Total Communication is an approach that encourages the use of all available ways to communicate, not just speech.

    This can include:

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    It’s not about replacing speech. It’s about supporting communication in every possible way.

    Think of it like this: if speech is currently unclear or limited, why restrict a child to the hardest route? Why not give them more tools to succeed?

    ‘But won’t this stop my child from talking?’

    This is one of the most common concerns I hear in clinic.

    Parents often worry that if a child starts using signs or a communication device, they will become ‘dependent’ on it and stop trying to talk.

    The research tells us something very different.

    Studies consistently show that AAC does not prevent speech development. In fact, it often supports it.

    • A review by Millar, Light & Schlosser (2006) found that AAC interventions do not reduce speech production and may actually increase it.
    • Romski & Sevcik (2005) demonstrated that children given AAC often develop stronger overall communication skills, including spoken language.
    • More recent work continues to show that providing AAC early can accelerate language development, not delay it.

    So rather than ‘giving up on speech’, using AAC is actually building the foundations that speech needs.

    Why Total Communication matters, especially for unintelligible children

    When a child is very difficult to understand, they are often experiencing a hidden frustration:

    ‘I know what I want to say, but no one understands me.’

    Over time, this can lead to:

    • reduced confidence
    • behavioural frustration
    • withdrawal from communication
    • fewer opportunities to practise language

    If a child cannot successfully communicate, they communicate less. And when they communicate less, their language development slows down.

    Total Communication breaks this cycle.

    By giving a child reliable ways to be understood, we:

    • reduce frustration
    • increase interaction
    • build confidence
    • create more opportunities for language learning

    And importantly, we allow them to show us what they already know.

    AAC is a bridge, not a barrier

    Using AAC (whether that’s pointing to pictures, signing, or using a device) does something powerful:

    It separates language from speech.

    A child might have lots of ideas, vocabulary, and understanding but their speech system (especially in cases like phonological disorder or childhood apraxia of speech) cannot yet keep up.

    AAC allows the child to:

    • express complex ideas now
    • practise sentence structure
    • develop vocabulary
    • take part in conversations

    All while their speech is still developing.

    In other words, AAC doesn’t replace speech. It keeps language moving forward while speech catches up.

    What does this look like in real life?

    In therapy, I often use a combination of approaches:

    • modelling simple signs alongside speech
    • pointing to symbols while talking
    • encouraging children to gesture or show
    • using drawings to support understanding
    • incorporating an AAC device such as LAMP Words for Life

    You might see a child:

    • say part of a word
    • point to a symbol
    • use a gesture
    • and look at you expectantly

    That is communication success.

    And success builds motivation.

    ‘I just want them to talk’

    Of course you do. And I do too!! That’s always the goal.

    But here’s the important shift in thinking:

    Children learn to talk by communicating, not by waiting until speech is perfect.

    If we hold out for clear speech before allowing other communication methods, we risk:

    • limiting their ability to interact
    • reducing practice opportunities
    • increasing frustration

    But if we support all communication, we give them:

    • more chances to express themselves
    • more positive communication experiences
    • more input and feedback

    And that is what drives progress.

    A balanced approach

    Total Communication doesn’t mean ‘speech is no longer important’.

    It means:

    • we continue targeted speech therapy
    • we work on sounds and clarity
    • and we support communication in the meantime

    It’s not either/or.

    It’s both/and.

    Final thought

    If your child’s speech is difficult to understand, the most important question is not:

    ‘Are they talking clearly yet?’

    It’s:

    ‘Can they successfully communicate?’

    Because communication is the foundation of:

    • relationships
    • learning
    • confidence
    • wellbeing

    And every child deserves a voice, in whatever form that voice takes right now.

    Feel free to contact me if your child needs help with speech and communication.

    Sonja McGeachie

    Highly Specialist Speech and Language Therapist

    Owner of The London Speech and Feeding Practice.

    References (parent-friendly):

    Health Professions Council registered
    Royal College of Speech & Language Therapists Member
    Member of ASLTIP

    Find a speech and language therapist for your child in London. Are you concerned about your child’s speech, feeding or communication skills and don’t know where to turn? Please contact me and we can discuss how I can help you or visit my services page.

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