What can we expect for our child and how can we best help?

We ask this question at every stage of development of our children as we search for the best treatments and therapies to enhance their quality of life. This summary of behaviors and treatments was originally prepared in 2017 by a group of parents of FOXP1 individuals with assistance. It was reviewed by investigators at the Seaver Autism Center for Research and Treatment at the Icahn School of Medicine at Mount Sinai in New York and the INSERM in Paris France. The section on Adults has recently been provided by parents of FOXP1 adults.



FOXP1 & INFANTS

Infants and children with FOXP1 syndrome should be followed by a clinician with expertise in pediatric neurodevelopmental disorders. These include but are not limited to developmental pediatricians, child and adolescent psychiatrists, and neurologists. A primary clinician can follow the child as they develop and recommend follow-up with other specialties as needed.

Early intervention is important to help infants diagnosed with FOXP1 syndrome to maximize their potential. As many infants with FOXP1 syndrome have low muscle tone, physical therapy can help with meeting motor milestones like sitting, crawling and walking. Occupational therapy can also help infants learn to develop fine motor skills, which are often delayed, like learning to pick up pieces of food for feeding. Some children with FOXP1 syndrome will require an occupational therapist with expertise in feeding difficulties. Since FOXP1 syndrome is associated with language delays, children should begin speech therapy with a certified speech and language pathologist (SLP) by 12 months of age. If a child is not making sounds of pleasure (coos, laughs) and vowel sounds by 6 months of age, a consultation

with a SLP is warranted.


Because most individuals with FOXP1 syndrome have intellectual disability and behavioral challenges, applied behavior analysis (ABA) may be recommended. It is also important to access special education services in the school system as the children approach school age.


FOXP1 & CHILDREN

Children may benefit from a variety of therapies to target language, motor, and cognitive development. Speech therapy should focus on functional communication (e.g., ability to express basic wants/desires). As a child’s functional language develops, speech therapy should focus on pragmatic language, or the social use of language. Pragmatic language interventions may focus on initiating, maintaining, and terminating back and forth exchanges. Occupational therapy should focus on fine motor skills, activities of daily living (e.g., feeding, dressing, toileting) and sensory reactivity. “Sensory diets” may be helpful for children who are sensory-seeking or sensory-averse to specific stimuli. Sensory diets can range from fine-motor manipulatives and activities for tactile stimulation to gross-motor activities such as jumping on a trampoline. Physical therapy may also be necessary when gross motor delays are present.


Behavioral issues may become more prominent during childhood. Some common behavioral issues reported are hyperactivity, impulsivity, anxiety, autism or autistic-like behaviors, and obsessive-compulsive traits. These include narrow interests, intense preoccupations or obsessions, repetitive behaviors and difficulty dealing with changes to routine or environment. Some parents have found

interventions that are helpful for children with autism to also be helpful for their children with FOXP1 syndrome.


These include:

  • Applied behavior analysis (ABA)

  • Visual supports such as picture schedules and social stories

  • Behavior and reward charts

  • Sensory tools

As the child grows, psychologists can provide valuable behavior-enhancement and management advice. For teachers unfamiliar with neurodevelopmental disorders, it will be important to share general information about the issues faced by children with FOXP1 syndrome, as well as specific adaptations and behavior management practices that have been found to help your child. Academic curricula should focus on academic fundamentals (reading, writing and basic math) and activities of daily living in order to teach students with FOXP1 syndrome the skills necessary to achieve maximum independence.


FOXP1 & TEENAGERS

A few FOXP1 syndrome families have reported issues with worsening behavior issues after puberty, especially aggressive behaviors. An important area for future research is to understand how prevalent these issues are and what behavior management practices can help teenagers with FOXP1 syndrome and their families deal with these behavioral issues.

Families may benefit from working with a Board Certified Behavior Analyst (BCBA) to address challenging behavior. A Functional Behavioral Assessment (FBA) can be performed in the home or at school to develop appropriate treatment plans. Some adolescents may benefit from cognitive behavioral therapy (CBT) with a licensed psychologist to target internalizing symptoms such as anxiety. A child and

adolescent psychiatrist with expertise in treating individuals with neurodevelopmental disorders will be critical in addressing clinically significant externalizing (i.e., hyperactivity, aggression) and internalizing (i.e., anxiety, depression) symptoms.


Academic curricula should continue to focus on functional academics and activities of daily living. Vocational training may begin during this time, as well as plans for transition to adulthood.


FOXP1 & ADULTS

As of 2021 globally there are at least 12 FOXP1 adults identified. The oldest is 42 years old. There may be significant differences in individuals, dependent upon the severity of the genetic mutation. As FOXP1 adults mature, the extreme mood swings of puberty mellow, bladder control is usually mastered, the dentist is no longer scary, and independence grows. FOXP1 adults tend to be regimented in their routines, enjoy collecting things, and often show autistic behaviors; however, autism is not always officially diagnosed. Communication is one of the biggest challenges for an individual with the FOXP1 diagnosis. As an adult it can be challenging for others to understand what they are saying. However, with today’s technology it has opened a whole new world for our FOXP1 adults to communicate successfully. Although they may not take an active part in the conversation, their receptive language is excellent.

Advocating for your adult child becomes a priority, as the support and services they receive in school does not transfer to their adult life. In many countries there are limited services and multi-year wait lists. Families may benefit from working with a facilitator to develop their child’s Person-Directed Plan. A Person-Directed Plan assists in identifying life goals and finding community connections, services and/or supports with the help of the family members and/or significant others of their choice.


A few years before individuals with FOXP1 graduate from the school system, parents should become familiar with local community service for adults with Intellectual and Developmental Disabilities (IDD). You may want to visit the services on site, ask questions, and determine which is best suited for your child. Services that support IDD adults may include:

  • Day programs

  • Independent-living, group homes, or family homes

  • Paid work opportunities

  • Volunteering within the community

  • Transportation services

  • Summer camps

  • Recreation activities

  • Respite services

Communication is one of the biggest challenges for an individual with the FOXP1 diagnosis. As an adult it can be challenging for others to understand them. However, with today’s technology it has opened up a whole new world for our FOXP1 adults to communicate successfully.