The symbol of a puzzle piece for Autism Spectrum Disorders epitomizes the complexity of treating this population. Just as there is no single, straightforward manner in which we treat all those with an ASD diagnosis, there is no one individual, group, or entity that can solve this mystery of Autism. From diagnosis, to treatment across multiple domains, to generalizing gains across all of the relevant systems in an individual’s life, success hinges on a group effort. This group effort is not one of isolated moving parts, but rather a collaborative process of coordinated care to serve a common purpose: our patients with autism.
Who is part of this collaboration?
For an individual with autism, there are multiple key players who provide coordinated care. At the core are, of course, the patient and his or her family network. The diagnostician, who may be the pediatrician, developmental pediatrician, psychologist, psychiatrist, or neuropsychologist, remains a part of the process to the extent that he or she may continue to treat or reevaluate the patient for this or other health-related matters. The primary care physician often either is this person or is the referral source and is a critical member of the collaboration, along with the partnering nurse practitioners. A common treatment package, and therefore extension of the collaborative treatment team, includes behavior consultative services (e.g., ABA intervention), Speech and Language therapy, Occupational Therapy, and Special Education services. In many cases, medication is or becomes part of the clinical picture, which there again invites the prescribing physician into the process.
With so many different backgrounds, how does the collaboration work?
Essential skills for a successful collaboration include interpersonal skills, organizational skills, and flexibility. At the root of these is the ability to be a systemic thinker, or the ability to understand the connections between different people, entities, or contextual factors, and then to recognize the different skill sets or perspectives of each member involved. When we achieve this, we lay the groundwork for successful and coordinated patient care for our clients with autism.
How and why to collaborate?
We can best illustrate the value of coordinated care for children with autism with an example.
Ten-year old Johnny was diagnosed at age 4 and he has busy, but supportive parents. Johnny attends a special education classroom full time, returns home for ABA therapy session four times per week and speech therapy sessions once per week. His pediatrician referred Johnny to a Psychiatrist, who prescribed a stimulant medication to address Johnny’s increasing difficulty focusing on his school work.
Now, this could go either way – each service represented by and operating exclusively as a solo practitioner, or each service proceeding as a consortium making coordinated actions for the comprehensive care of Johnny.
Let’s imagine the former scenario…
Johnny’s teacher, in anticipation of Johnny’s recent difficulty when presented with individual work, arranges for an aide to work 1:1 with him to complete a task, taking points away every time he is off task.
Meanwhile, at home, Johnny’s ABA team is working towards self-monitoring of attention and increasing independence with table tasks by delaying prompts and reinforcing sustained attention for increasingly longer durations. Johnny’s parents give the stimulant prescription each morning as indicated and then ask Johnny how he did and if he stayed focused during the day, to which he always replies “yes,” and then the parents report this back to the psychiatrist each month at their appointments.
During Speech Therapy sessions, Johnny has no apparent difficulties with attention and he was reported to have an increased number of conversational exchanges about cars and snakes. In three months at Johnny’s IEP meeting, his parents would come to find out that his repetitive comments about these topics has led to considerable ostracizing from his peer group.
From the above scenario, to no single person’s fault, the treatment goals are contradictory and the approaches divergent. How is Johnny to know whether he should be seeking help or persisting on his own through tasks? Good conversation skills in one context is leading to further isolation in another.
There are numerous other concerns with taking this type of disjointed approach, but now let’s take a glimpse at an alternative outcome…
Johnny’s psychiatrist plans a brief consult with Johnny’s pediatrician to discuss his plans and determine if the pediatrician would intend to resume the medication for nocturnal enuresis that Johnny recently discontinued should there be a relapse in that condition, and to evaluate any possible contraindications that may exist. Once they clear things up, the psychiatrist sends the prescription and the Pediatrician makes note of this so that he can check in with the family at their visits.
Johnny’s ABA Consultant coordinates with the school to share strategies and evaluate success, keeping in mind least intrusive measures, and then offers to train staff on implementation of the self-monitoring reinforcement system in order to free up the aide for other children or purposes. The consultant also shares the data as well as the results of the school coordination with parents and then trains them to implement the procedures during homework time for further generalization purposes. In turn, the parents notify the consultant of the Psychiatrist’s prescription for Johnny that she intends to start after the weekend.
Working Together: Coordinated Care for Autism Treatment
The Consultant then reaches out to the Psychiatrist to gather information about what positive results and/or side effects may look like and uses that information to devise a simple data collection tool that stays with Johnny and is completed by key school personnel, the speech therapist, ABA team, and parents at the critical times throughout the day.
The consultant collects and graphs this data to be shared with parents and the Psychiatrist at the two-week and 4-week follow up. As part of the narrative notes section in the data form, the teacher makes regular note of Johnny’s social difficulties so the team can review them.
The Speech Therapist pulls from her pragmatic language treatment tools and begins to embed related concepts into her sessions, while emailing a link to the teacher and Behavior Consultant so that consistent terminology can be used when providing feedback to Johnny for pertinent social scenarios. His ABA provider weaves them into their weekly sessions, and his parents do the same on their weekend playdates.
How Does Coordinated Care Help Johnny?
The benefits of taking a coordinated approach to Johnny’s autism care are countless. The synergism across disciplines, as illustrated in this example, was based on interprofessional communication, with each member bringing their own knowledge and skills into the dynamic decision-making process.
Ultimately, what could result is more streamlined and effective treatment that has greater reach both in depth and breadth. Johnny is less likely to experience isolation or confusion about how best to achieve his goals, and will be less reliant on adult support to reach his full capacity. Moreover, future treatment decisions, namely medication-related, will be based on a collective exchange of information not a vague and disjointed impression.
So, the next time we are embarking down a path with a client, doing what we do best to solve the puzzle of the hour, let’s take pause to consider the larger picture and reach out to those who may just possess another piece of the puzzle or possibly have insight into what connections may help us reach our collective goal.
Johnny, the larger ASD community, and their respective networks will be grateful you did and likely so will you.