Families & Caregivers
Speech Therapy for Angelman Syndrome
Speech therapy (ST) is typically performed by a speech-language pathologist, also referred to as SLP. The SLP experts who collaborated on the consensus statement for AS also developed a supplemental summary table for speech and language care in AS. This table is meant for health care providers; it may be helpful to share with your loved one’s SLP. The information below is based on the supplemental table and the consensus guidelines.
Past research has shown that people living with AS have better receptive language skills (what they understand) than their expressive language abilities (what they can communicate outwardly). People living with AS may use vocalizations (whines, cries, laughter), body movements, gestures, eye gaze, facial expressions, sign language, behaviors, and more to communicate. Each person living with AS is unique in their language abilities. Speech ability and genotype may be correlated, with individuals living with UPD AS and ICD AS (especially mosaic ICD AS) being more likely to use spoken words.
Individuals living with AS are most likely to communicate to refuse something, make a request, or interact socially. A total, also called multimodal, communication approach is recommended when working with individuals living with AS, as they may use a combination of different methods to communicate. For example, an individual may use a sign for more, a specific noise for a parent, and pointing to indicate something they want. The primary goal of speech therapy is spontaneous communication.
Being able to communicate is critical, both for physical and mental health. If an individual living with AS does not have a way to communicate, behavioral problems and safety issues may be more likely.
Augmentative & Alternative Communication
Because of the difficulties in speaking words and the difficulties in motor skills that impact formal sign language use, the consensus guidelines recommend that speech therapy in AS focus on the use of augmentative and alternative communication (AAC). There are many different types of AAC, ranging from low-tech picture communication systems to high-tech speech generating devices or eye gaze technology.
Similar to how a child may need glasses or orthotics, individuals living with AS need a communication system. Through AAC tools and strategies, individuals living with AS can successfully and meaningfully learn to communicate.
An AAC assessment is the first step to identifying AAC tools and strategies. It is important to work with a professional or team of professionals who specialize in AAC to ensure an individual tries and obtains an appropriate AAC system. There is no “one-size-fits all” device, and no one system is appropriate for every individual living with AS. Individuals may need to try multiple different types of AAC to find one that works for them and may benefit from a variety of communication modalities for them to choose from depending on the setting, who they are talking to or what they are talking about.
In addition, caregiver training to learn to use AAC appropriately is very important. Modeling AAC, also called aided language stimulation/input is considered the best approach for teaching AAC use in AS.
AAC use takes time and support for both the individual living with AS and the caregivers and educators. Per the American Speech-Language-Hearing Association, facilitated communication (also called assisted typing) should not be used, as it is not scientifically supported and may actually be harmful (ASHA position statement).
For more information about AAC in Angelman syndrome:
Augmentative and Alternative Communication (from the American Speech-Language-Hearing Association):
Feeding Therapy
Dysphagia (difficulty swallowing), feeding difficulties, and frequent choking have also been reported as common issues in individuals living with AS. SLP and occupational therapists (OT) play a crucial role in managing these issues as well. Like other health care providers, SLP or OT may specialize. Some SLP may focus on communication while others may focus on evaluating and treating feeding issues.
Most individuals living with Angelman Syndrome can take all their nutrition by mouth and do not use feeding tubes. A feeding tube may be considered in individuals with a history of aspiration pneumonia (more common in the deletion genotype).
The consensus statement recommends early involvement of a feeding therapist, with a feeding evaluation at diagnosis and throughout early childhood. Choking remains a risk throughout life due to the combination of not chewing properly and stuffing the mouth. Difficulties with chewing are impacted by uncoordinated tongue movements.
Often, premature vertical chewing, tongue thrust and mashing movement patterns are observed with foods that require lateral tongue movements and rotary chewing patterns. There is often difficulty with anterior spillage and transitioning from bottle to sippy cup and from sippy cup to straw cup.
Feeding therapists (OT specialty) working with individuals with Angelman syndrome may address positioning, self feeding, transitioning to new drinking systems, exploring foods with new textures, and external pacing cues. Of all self-care skills, individuals living with AS are most likely to achieve the highest rates of independence with self-feeding, especially with self-feeding with fingers and bringing adaptive drinking cup to mouth.
For more information about feeding therapies:
Feeding and swallowing issues in children (may also apply to adults living with AS)
Find a SLP (can search for swallowing disorders or other feeding issues)
Adaptive Equipment for Feeding that may be considered (always consult with your loved one’s therapist first!):
Disclaimer: The information provided is for general informational purposes only and is not intended as medical advice, diagnosis, or treatment. While FAST strives to provide accurate and up-to-date information, the content on this site may not always reflect the most current research or clinical guidelines. The inclusion of therapy services information, treatments, devices, or specific healthcare providers does not imply endorsement, recommendation or guarantee of safety, efficacy, or availability. Reliance on any information provided by this website is solely at your own risk. FAST disclaims any liability for any errors or omissions in the information provided or for any decisions made based on this information. For personalized medical advice or specific health concerns, please consult a qualified healthcare professional.