Overview
When a child with Alström Syndrome experiences both hearing and vision changes, communication shifts from primarily auditory and visual methods to ones that use touch, residual senses, and adapted technology. The shift is gradual — most children with Alström have years of dual-sensory function before deafblindness becomes profound. Knowing the methods early helps families prepare and integrate them naturally. This article covers the main communication approaches used by deafblind children and the resources that support each.
A note on terminology
"Deafblind" describes a person who has both hearing and vision loss, even when neither is total. Most children with Alström become deafblind in this functional sense during adolescence or adulthood. The deafblind community uses a range of terms — some prefer "deafblind," some "Deafblind" (with capital D, signaling cultural identity), some "deafblindness." Follow the lead of the person and family.¹
Communication methods by category
Visual methods (used while vision is functional)
- Spoken language with hearing aids or cochlear implants
- Lip reading (speech reading) — supplements hearing especially in noisy environments
- Visual sign language — American Sign Language, British Sign Language, or others depending on country
- Cued speech — handshapes near the mouth that disambiguate spoken words for lip readers
- Visual gestures and pointing
These methods become harder as visual fields narrow and acuity declines.
Tactile methods (used as vision changes)
- Tactile sign language — the receiver places hands on the signer's hands to feel the signs
- Pro-Tactile (PT) — a cultural and communication system developed by deafblind people that provides signal information through touch on the body (e.g., on the receiver's back, arm, or leg) alongside conversation
- Print-on-palm — writing letters with a finger on the receiver's palm
- Hand-over-hand signing — variation where the receiver's hand follows the signer's hand
- Tactile fingerspelling — letters from the signing alphabet conveyed through touch
- Body-based signals — tapping shoulders, drawing on backs, and other tactile cues²
Tangible and object-based methods
- Object cues — physical objects that signal activities or transitions (e.g., a cup means snack time)
- Tactile schedules — sequences of objects representing the day's activities
- Tactile maps and diagrams — used in education and orientation
Technology-based methods
- Refreshable Braille displays — devices that translate text to tactile Braille; allow communication via text
- Captioning and live transcription apps — work while vision is sufficient
- Print-on-Braille devices — capture text from print and produce it in Braille
- Smartphones with screen readers
- Video relay services for spoken-language to sign-language interpretation
Building communication over time
Most families develop a layered approach, using whichever methods work in a given situation:
- Spoken language at home in good lighting and quiet
- Tactile signing for one-on-one important conversations
- Captioning for media
- Object cues for routines
- Technology for academic and adult life
Children adapt naturally to using multiple methods if they're introduced over time without being framed as one replacing another.
The role of an intervener
An intervener is a person specially trained to support communication and learning for a child or adult who is deafblind. Interveners:
- Provide consistent, individualized communication support
- Bridge the deafblind person and their environment
- Convey environmental information that would otherwise be missed
- Support participation in learning, social, and family activities
In schools, interveners are sometimes called deafblind paraprofessionals. The training is specialized; not every school has staff trained in this role, but advocacy and federal funding (in the US) increasingly support intervener services.³
Working with the deafblind specialist team
Children with progressive deafblindness benefit from:
- A Teacher of Students with Visual Impairments (TVI)
- A Teacher of the Deaf and Hard of Hearing (TODHH)
- A Deafblind specialist or consultant — adds expertise beyond either single-disability teacher
- Speech-language pathologist (SLP) with deafblind experience
- Orientation and mobility (O&M) specialist with deafblind experience
- Intervener for direct one-on-one support
Combined deafblind teams are not yet universally available. The National Center on Deaf-Blindness (US) maintains state-by-state contacts; equivalent services exist in the UK, Canada, Australia, and many other countries.
Resources for families
United States
- National Center on Deaf-Blindness (NCDB) — federal technical assistance center; state deafblind projects in every state
- Helen Keller National Center for Deaf-Blind Youths and Adults
- Perkins School for the Blind — programs for children with deafblindness
- American Association of the Deaf-Blind
United Kingdom
- Sense — national deafblind charity providing services and information
- Deafblind UK
International
- Deafblind International — global network of organizations
- Many countries have national deafblind associations
Common questions
Frequently asked questions
Short answers grounded in the article and the underlying references, so families can quickly understand the main point without losing the medical meaning.
Question
When should we start tactile communication methods?
Answer
Most experts recommend introducing tactile methods well before vision and hearing fully decline — same principle as starting Braille early. Tactile signing introduced at age 6–8 to a child with developing deafblindness becomes natural rather than emergency learning later.
Question
What if my child uses spoken language well already?
Answer
Spoken language can continue alongside tactile methods. Many adults with Alström who became deafblind in adolescence use speech and tactile signing situationally — speech in good environments, tactile methods elsewhere.
Question
Is tactile sign language hard to learn?
Answer
For families starting from scratch, learning a sign language plus tactile adaptations is a real commitment — often years of regular study. Many families learn alongside their child. Many start with tactile fingerspelling and Pro-Tactile basics before moving to a full sign language.
Question
What if no one in my area knows tactile communication?
Answer
The state deafblind project (in the US) or equivalent national service can help connect you with trained professionals or remote consultation. Some online programs teach tactile communication remotely.