Understanding Angelman Syndrome: A guide for parents

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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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    Cognitive reframing

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    Each student is different and having a great rapport is crucial to our success.

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    Very quick ones! Students can post something, place a counter in a game, take out a Jenga block from the tower, pop in a counter for ‘connect 4’, stick a sword into the Pop the Pirate barrel or add a couple of Lego blocks to something they are building.

    I hope this is helpful, please contact me for any questions.

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    A last word on oxytocin

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    This approach can help reverse the negative cycle and create a more positive and connected relationship between parent and child.

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    The London Speech and Feeding Practice


    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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    Something that keeps surprising me…

    After thirty years of helping children with lisps, you’d think very little would still surprise me. And yet…

    Girl looking at herself in a mirror and looking at her tongue

    Every few weeks, a lovely, and well-informed parent will describe their five, six, or seven year-old’s slushy, sideways /S/ and then ask ‘So, how many sessions do we need to fix this? Perhaps five–six? ‘

    And every time, I have to resist the urge to laugh, cry, and reach for the biscuits all at once. Because the honest answer, for an established lateral lisp in a school-aged child, is usually twenty sessions or more. Wait! Hear me out!…

    ‘Why so many?!’ … once you understand what’s actually going on inside your child’s mouth, the number 20+ does no longer sound outrageous and starts sounding rather reasonable.

    First: not all lisps are equal

    Most people picture a lisp as the gentle, even endearing /TH/ for /S/ — ‘thnake’ instead of ‘snake’. That’s an inter-dental lisp, where the tongue pokes forward between the teeth. It’s common, it’s developmentally normal in younger children, and this is the important bit, it’s usually visible. It’s still a bit tricky to correct at first but I often can show a child what to do, they can watch themselves in a mirror, and quite often we’re away. But it still takes a lot longer than parents think because just fixing the sound does not mean it will be produced correctly in normal, daily speech and conversation.

    Lateral lisp

    A lateral lisp on the other hand is an entirely different animal. Instead of the air flowing in a neat central stream down a groove in the middle of the tongue, it spills out over the sides, around the molars. The result is that wet, slushy, quality. It affects not just /S/ and /Z/, but very often /SH/, /CH/ and /J/ too which is a big chunk of English.

    Here’s the snag: it’s happening where nobody can see it. There’s no mirror in the world that shows you the sides of your tongue as you are speaking, or chewing for that matter. We’re teaching a child to control a movement they can’t see, can’t easily feel, and have never once performed correctly in their life.

    By five, six or even seven years old your child has said the /S/ sound about several hundred times a day, every day, for several years. It’s one of the most frequent sounds in English: it makes our plurals, our possessives, our verb endings. Every ‘cats’, ‘let’s’, ‘she runs’.

    So we are now talking about a deeply ingrained motor habit, rehearsed tens of thousands of times, that now feels completely normal and correct to the child producing it. We’re not teaching a new skill onto a blank page; we’re overwriting a very strong habit. Think of a tennis player with a flawed serve who’s played for five years… You don’t fix that in a fortnight, and nobody expects you to.

    The good news is: school children, seven-year-old and up, are brilliant at this work. They can self-monitor, they can practise independently, they can hear the difference. It just takes time.

    The quiet culprit: where the tongue lives at rest…

    Here’s the piece that most parents have never heard, and it explains a lot.

    When the mouth is at rest, the tongue should sit up — tip resting lightly behind the top front teeth, body gently suctioned to the roof of the mouth, lips together, breathing through the nose.

    Many children with a lateral lisp have a low, forward resting tongue posture. The tongue sits on the floor of the mouth, often with the lips slightly apart. This is frequently associated with a history of mouth breathing, blocked noses and allergies, enlarged tonsils or adenoids, prolonged dummy or thumb-sucking, and sometimes dental or orthodontic differences such as an open bite.

    Why does this matter so much? Because a good /S/ requires the tongue’s sides to brace firmly against the upper back teeth to form that central channel. A tongue that spends 23 hours a day flopped on the floor of the mouth simply doesn’t have the habitual strength, position or awareness to do that on demand. We can teach a beautiful /S/ in the clinic — but if the tongue’s default setting is ‘down’, we’re swimming upstream all week.

    So, for many children, part of the work is establishing a better resting posture alongside the sound itself. That’s foundational and it’s slow.

    So what does twenty-plus sessions actually achieve?

    Therapy for a lateral lisp moves through a strict hierarchy, and you cannot skip a rung:

    • Auditory discrimination: Can they hear the difference? (Often, initially, no.)
    • Eliciting the sound: Sometimes a single session, can be six.
    • Stabilisation: Building consistency in isolation, then syllables, then single words (beginning, middle, end).
    • Blends: Mastering challenging combinations like ‘spoon’, ‘street’, and ‘smile’.
    • Sentences: Moving to phrases, full sentences, and structured conversation.
    • Generalisation: Using it naturally with family, at school, when tired, or when telling a long story.
    • Self-monitoring: Training them to catch and correct themselves without therapist intervention.

    Rushing a level guarantees a collapse two levels later. I’ve never once regretted going slowly; I’ve frequently regretted going fast.

    The bit that decides everything: home practice

    Let me be blunt in a nice way 😊 The child who practises five to ten minutes a day, six days a week, will finish in half the time of the child who practises the night before their session.

    An hour with me per week is roughly 1% of your child’s waking life. The other 99% is where habits are made or unmade. What I need at home is:

    • Short and daily beats long and occasional: Five focused minutes, ideally at a consistent time.
    • Practise only at the set level: If we’re on words, don’t leap to sentences. That’s how we go backwards.
    • Give specific feedback: Say ‘that one was lovely and sharps or ‘that one slipped sideways, try again’.
    • Hold back on everyday corrections: Don’t correct them in normal conversation until we’re ready.
    • Record them occasionally: Children love hearing their own tangible progress.

    The bottom line

    I’m good at this. I’ve been doing it for thirty years and I love it. But I’m a therapist, not a magician, and the parents who get the best outcomes are the ones who view this as a partnership. When we work together—combining expert clinic guidance with steady, gentle practice at home, that ‘twenty-plus’ number isn’t a sentence. It’s simply the guideline to giving your child a clear, confident voice for the rest of their life.

    Do get in touch with me. I would love to hear from you and help you and your child.

    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.

    3
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    4. Have clear start and end points in activities

    Some children with speech, language and communication needs have difficulties with transitioning from one activity to another. They also have difficulties with changes in routine. This can add to their frustration and changes in behaviour. So, how do you show a clear start and end to an activity? You can have a visual timetable, or you could have ‘start’ and ‘finish’ boxes where you place all the materials in the box labelled ‘start’. And once the activity has finished, you put the items in the box labelled ’finished’. If you need support with transitions, please contact me.

    5. Use visuals

    Visuals can support your child to understand routine and spoken language. Visuals can range from symbols to online images, to photographs, or a combination. Explore which type of visuals work well for your children. Using visuals can be powerful if used correctly. Make the most of the opportunities that visuals can provide for your family.

    Increase confidence and reduce frustration in children with speech and language and communication difficulties today. Please feel free to contact me if you need any support or tips on maximising these opportunities.


    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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    Discover nine ways to support literacy in autistic children

    We are all aware that Autism is on a spectrum. By the very nature of this, it means that every child will present differently, so an individualised approach is required. We need to remember to use a child’s strengths to support their needs. By using a person-centred approach, you’ll see your child’s literacy develop and thrive.

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    2. Start reading to your child at an early age. You can never start too early. This creates a love for books and supports vital pre-literacy skills (such as increasing vocabulary, following narratives, awareness of sounds in words, and letter recognition and awareness). By supporting pre-literacy skills, you’re starting the process to create confident young readers.
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    4. Use their interests to select appropriate reading material. In addition, you can then create questions on the book and provide a scaffold to support your child with the answer.
    5. Use technology to spark their interest in reading. Demonstrate how they can read online. This is often successful as it becomes an individual activity as opposed to needing social interaction.
    6. Provide them with a choice of texts (e.g., would you like ‘Perfectly Norman or when things get too loud’) rather than an open-ended question such as ‘What book would you like to read?’
    7. Write key pieces of information down on paper. Research suggests that Autistic learners understand written text better than speech.
    8. You could have a ‘word of the day’ from chosen reading material that you explore together.
    9. Reading aloud to your child can have many benefits which include understanding vocabulary to how the book is read, with appropriate intonation.

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    The ethos at London Speech and Feeding:

    “If they can’t learn in the way we teach, then we teach the way they learn”

    If you need speech, language or communication support or advice, I am always here to help.


    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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