When Autism Treatment Ends, What Comes Next?

Karen Cammuso, PhD, ABPP, and Karyn Blane, PsyD

Autism is a complex disorder of brain development. Most children show signs of this lifelong disability in infancy, and are diagnosed between 18 and 36 months of age. Early intervention is crucial to achieving the best possible outcomes for children with autism spectrum disorder (ASD).

The core symptoms

While every child is different, most with ASD share three core symptoms:

1. Communication difficulties, including problems with:

  • self-expression
  • understanding others
  • maintaining conversations
  • expressing emotions or understanding those of others
  • making eye contact
  • using gestures and nonverbal communication

2. Social impairment, including:

  • the inability to initiate or respond to social interactions
  • difficulties making friends
  • a seeming lack of interest in peers

3. Repetitive and self-stimulating behavior, such as

  • body rocking
  • head banging
  • hand flapping
  • twirling
  • repeating words or phrases

Treating autism

ASD treatment focuses on addressing those three core symptoms. While it is often treated medically to calm down activity level and increase attention, the most commonly used approach is known as applied behavior analysis (ABA).  

ABA systematically analyzes skills, monitors data, and builds up each skill area individually through positive reinforcement. The focus is specifically on improving behavior, to increase communication and compliance and to decrease the frustration and disruptive behaviors that often accompany ASD.  It is typically done in the home or community settings, but can be done in school as well. The sooner this intervention is used, the better the outcome in terms of improvements to an individual’s ability to communicate and interact with others. This can ultimately result in an increased quality of life for the whole family.

When does treatment end?

ABA uses one-on-one systematic teaching to build up a child’s imitation skills - since language is based on imitation. That is followed by a high level of prompting and reinforcement to ensure success.

Research supports that when a behavior is followed by an immediate reward, that behavior is more likely to be repeated, and treatment is recommended to be up to 40 hours per week over years.

Children learn to express themselves through pictures, signs, or words rather than behavioral excesses, such as aggression or self-injury. Over time, with prompting and by pairing reinforcement with these skill sets, children learn how to learn and enjoy social exchanges.

Parents are involved in all aspects of treatment and are essential to the child’s success both to address every day skills and to carryover skills outside of sessions and in the community. Skills are monitored through data with a decrease of services determined by the individual’s relative gains in communication, interactions, self-care, safety skills, and independence, and ability to benefit from less intensive services. 

In addition to the core elements of ASD, other conditions, known as co-morbidities, do often arise in individuals. Some estimates say 40 to 70 percent of those with ASD will also have a psychiatric diagnosis. ADHD, anxiety, and mood regulation disorders are most common, as well as challenges such as self-injurious and oppositional behavior.  These conditions can occur throughout the lifespan and require intervention above and beyond the traditional ASD interventions noted above.

Transitioning

Often, individuals with autism transition to an educational setting, some of which use discrete trial training, and others use approaches that are supported by behavioral, occupational, and speech/language therapies, to teach child how to be in a school setting. 

The individual’s level of intellectual functioning determines how long education lasts, and what treatment approach is used. Many individuals have educational programming that extends beyond their senior year, and for some until age 22.  This increasingly focuses on learning vocational and life skills; schools, in partnership with the Office of Rehabilitative Services (ORS) provide training and education in job skills, including assessment and exposure to job opportunities, and training in "soft skills," the social understanding and interaction skills required in the workplace. 

Many adolescents and families seek care for behavioral health issues to ensure that behavioral health challenges are not obstacles to being part of a workplace.

Independent living

Many individuals with autism are able to live independently as adults. Their level of intellectual functioning is one predictor, and 50% of individuals with autism do not have an intellectual disability.  However, adaptive skills are another predictor, so that individuals who have made progress in social understanding and functioning, as well as self-care and community skills, will have greater success at achieving independence.  Regardless of disability status, behavioral health issues can be an obstacle to living independently.

Part of the workforce

Individuals with autism can work, but careful assessment and creative thinking are needed to match the job to the individual.  There is no one job type that is appropriate for individuals on the spectrum. The right job should be based on that person's social functioning skills, intellectual abilities, and interests. Many people with autism, particularly those with more significant cognitive and social impairments, will require support in the workplace, which may range from initial coaching to ongoing oversight and supervision.

How can parents and family members help with the transition?

Just as they are an important part of treatment, parents and family members are also critical for a successful transition. To be supportive, parents and family members should:

  • encourage independence when the child is ready
  • resist the temptation to provide more support than is needed
  • approach decisions about child rearing to prepare them for the future, while providing adequate supports for what they need at present; understand their skills and limitations

Advice for parents

  • Network with others and use resources to assist in advocating.
  • Work closely with your child’s school beginning at age 14 to be sure that adult planning is on track.  In Rhode Island, there is an educational mandate for all individuals with anticipated long-term needs. The Department of Behavioral Healthcare, Developmental Disabilities & Hospitals (BHDDH) and the ORS will be involved in their planning; this is most often initiated through the educational team.
  • Think outside the box.
  • Consider unique talents and how they connect to vocational opportunities.

More resources

Any change poses its own challenges, however, there are many resources available in Rhode Island.

For more information on autism and its treatment, please visit our website

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