Down syndrome is a condition caused by an excess chromosome in one’s genome. It is NOT a disease.
A person or child with Down syndrome may have an extra chromosome 21 (entirely or partially). It is a genetic disorder that is typically not hereditary.
According to the Centers for Disease Control & Prevention (CDC), around 6,000 babies in the US are born with Down syndrome.
What Are The Common Physical Features Of Down Syndrome?
The presence of “excess” genetic material results in traits typically associated with Down syndrome.
- Low muscle tone
- Small stature
- Upward slant of the eyes
- A single deep crease across the palm
Although almost everyone with complete or partial trisomy of Chromosome 21 share these physical traits, their cognitive and communication skills can vary significantly.
How Is Stuttering Related To Down Syndrome?
The severity of the syndrome can vary and influence the person’s speech accordingly. Children with Down syndrome often have disfluent to unintelligible speech. Speech language pathologists (SLPs) note that children with Down syndrome exhibit a complex interweave of phonological and motor-speech delay.
There is considerable debate as to whether the characteristic disfluencies in the speech of children with Down syndrome can be considered stuttering. However, the studies on disfluencies among children and adults with Down syndrome prove that stuttering is more persistent among them as compared to the neurotypicals.
While only 1% of the adults stutter, around 47% of those with Down syndrome exhibit stuttering or stuttering-like-disfluencies.
Growing research on Down syndrome shows a strong bond between cognitive and affective factors, and speech planning and production.
That brings us to the Demands and Capacities model. It suggests that those with Down syndrome may be struggling more than the typical population to balance the demand of smooth language production and the child’s capability to process language.
A study by Kurt Eggers included 26 Dutch-speaking children with Down syndrome between the ages of 3 and 13 years. It shows that 30% of the observed children have a stutter. The number is significantly higher than the prevalence of stuttering among the typically developing children.
A significant percentage of the population with Down syndrome have difficulty in speech production for life. They can show signs of both stuttering and cluttering. Their fluency typically wavers between 10% and 45%.
Why Is Traditional Speech Therapy Not Effective For Those with Down Syndrome?
One of the most prominent challenges in treating stuttering in children with Down syndrome is their short attention span. According to Silverman, 2007, and Hula & McNeil, 2008, during speech therapy, linguistic and non-linguistic tasks compete for attention.
Down syndrome has been linked to the loss of hearing for up to 80% of the population as studied by Sacks and Wood in 2003. In such instances, visual cues may take precedence over auditory cues during therapy. That makes conventional stuttering treatment less effective for them.
Therapists must adjust the course and nature of stuttering therapy for the special needs of children and adolescents with Down syndrome. They prefer learning through imitation since their cognitive process “tells” them to avoid change and new challenges of learning. That significantly contributes to the reduced efficiency of conventional therapy.
According to a review by Monica Bray, Children with Down syndrome may imitate emotions and actions of their chosen models. Self-awareness remains limited and so does the ability to assess and process emotions in others.
Individuals with Down syndrome may have a wide range of emotional developments, awareness and understanding of the self. Each individual may respond differently to the cues they receive from others.
Therefore, keeping their mental health in check is just as important and designing new therapeutic methods that can address their speech disfluencies.
How Can A Speech Therapist Help An Individual With Down Syndrome?
Speech therapists and speech-language pathologists (SLPs) must explore the level of self-esteem and self-awareness in each individual. They should design an array of activities that include pictorial representation, visual cues, and action-based methods.
Using picture material may be more useful for the younger population. They must ensure that the methods put minimal pressure on their language skills.
The SLP can then group the individuals with Down syndrome based on a number of factors, including the result of activities like –
- Dividing them into groups depending on the picture material or visual cues they like or dislike
- Self-grouping based on those who are “like me” and “not like me”
- Ranking self and others on the basis of who’s “the best” at art, making friends, talking, and sports
Coding and scoring the activities on the basis of the participants’ response time can give the SLP a good idea about their cognitive skills, emotional maturity, and self-awareness.
They must conduct in-depth interviews with the individuals and their parents/guardians to explore their ability to comprehend specific social and communication situations.
Next, the therapist must modify stuttering therapy for the individuals with Down syndrome. Research shows that stuttering therapy can benefit an individual with any fluency problem in a holistic manner.
Therefore, every speech therapy course should consider the following factors –
Affect
The higher the self-awareness of an individual, the more are the negative feelings and attitudes associated with speech disfluencies like stuttering.
Speech therapy should focus on the feelings that arise from disfluencies. Apart from it, programs to develop positive thinking and improve self-esteem should be core features of any speech therapy program for adults and children with Down syndrome.
Teaching the parents to praise children with Down syndrome each time they speak with fluency has proven to be the strongest reinforcer.
One of the positive aspects of children with Down syndrome is that they may show signs of frustration during disfluency, but they don’t show signs of internalized shame or guilt. That is one of the traits speech therapists should explore and strengthen to boost self-esteem.
Behavior
Altering behavior change in speech consists of fluency shaping, speech modification, or a combination of both.
For adults who stutter, a high cognitive load can impact fluency. It is the same for children and adults with Down syndrome.`
It is difficult for those with Down syndrome to learn and memorize new speech patterns, since it may further contribute to their disfluency.
It is necessary for speech therapists to focus on their strengths which may include –
- A willingness to communicate
- The lack of internalized shame and guilt
- The ability to respond to visual approaches like singing and reading
Focusing on the strengths can help enhance the fluency and communication skills of those with Down syndrome.
Cognition
Cognitive approach to stuttering therapy emphasizes changing attitudes. However, due to limited self-awareness of one’s speech pattern and disfluencies, traditional speech therapy and cognitive behavioral therapy (CBT) has limited efficiency in the case of individuals with Down syndrome.
It is up to the SLP to develop newer and innovative methods to develop and maintain positive communication skills like maintaining steady eye contact and a confident stance. These have shown to be successful on everyone with learning difficulties including those with ADHD, autism, and Down syndrome.
What Gives Hope To Speech Therapists And Parents Of Children With DS?
Speech therapy for anyone with a limited attention span, or high preference for visual cues only may pose an unlimited number of challenges. However, a research review published by Monica Bray shows that most people with DS have an inherent willingness to communicate, high self-esteem, immunity to guilt and shame related to speech disfluencies and a general interest in people. These factors provide speech therapists with multiple scopes to modify traditional speech therapy and improve the communicative situation.
