TREATING AN INVISIBLE CONDITION: ASD DIAGNOSIS

TREATING AN INVISIBLE CONDITION

TREATMENT AND THERAPY OPTIONS AFTER AN ASD DIAGNOSIS

By Sarah Kim Rachel Zhang

wHAT IS AuTISM SPECTruM DISOrDEr?

Contrary to popular belief, autism spectrum disorder (ASD) is not a single disorder, but rather a diverse set of several neurodevelopmental disorders characterized by symptoms such as hypersensitivity to certain stimuli, delays in cognitive or social skill development, and difficulties with verbal or nonverbal communication.

In order to make a diagnosis, health professionals must first observe specific delays in a child’s development. However, there are a multitude of other behaviors which may be indicative of autism; in fact, not everyone with autism spectrum disorder possesses characteristic traits of autism to the same degree. Due to the variability in behavior observed across different people with ASD, it can sometimes take months or years for someone to obtain a proper diagnosis. Considering this difficulty, it becomes critical to comprehend the various aspects of ASD including symptoms, diagnosis, treatment options, and available healthcare specialists.

TYPES OF DIAGNOSTIC TOOLS & THE PrOCESS OF GETTING A DIAGNOSIS

The American Academy of Pediatrics (AAP) recommends that a child receive developmental and behavioral screening during regular visits to their pediatrician or primary care physician at 9, 18, and 30 months old. In addition, the AAP also recommends that children receive specific screening for ASD at 12 and 24 months old, as well as additional screening if a child is at higher risk or exhibits behavior symptomatic of ASD.

Arriving at a general diagnosis relies on two steps. First, a preliminary screening is conducted to determine if a more thorough evaluation for autism may be necessary. The screening also identifies other conditions which may be present. If the screening results in a need for further examination, the individual will be referred to a developmental specialist for a

more comprehensive diagnostic evaluation.

The absence of a consistently accurate medical test or a distinctive physical marker makes it much more difficult to identify ASD. In order to improve the diagnosis process, medical practitioners have developed several assessments to definitively diagnose ASD and gauge its severity.

The Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) is a checklist for early detection of ASD among children between 16 and 30 months, asking yes/no questions. Examples of these questions might include if the child in question becomes upset by everyday noises or responds when their name is called. The Autism Diagnostic Observation Schedule–Generic (ADOS-G) is a structured interview with directed activities. The Autism Diagnostic Interview–Revised (ADI-R) is a semi-structured interview with the child’s parents. The Childhood Autism Rating Scale (CARS) uses a 15-point system to evaluate a child’s listening response, verbal communication, relationship with others, and ability to adapt to change. All of these exams are conducted by trained specialists.

It is important that ASD is identified as soon as possible. The earlier ASD is diagnosed, the sooner treatment can begin, and the sooner the individual will benefit from this treatment in the long run. Most ASD diagnoses occur between the ages of 2 and 3 years old, when delays in reaching certain social, communicative, and developmental milestones become most apparent. While it is also possible to be screened for autism as an adult, most diagnostic tests are designed for children, and it can be particularly difficult to diagnose ASD at an older age. This is further complicated by adults who have developed strategies to compensate for their condition or have learned to mask their symptoms in order to struggle less with social acceptance and interaction. Adult evaluations for autism rely heavily on direct observation and discussions with the specialist concerning their difficulties with sensory issues, social situations, and restricted interests or compulsive repeated behaviors such as self-stimulation, or “stimming”.

If a person’s early development did not have any features suggestive of autism, but they began struggling with social withdrawal and related issues in their teens or adulthood, this suggests a cognitive or mental health issue other than ASD.

TrEATMENT THErAPY AND

Because autism manifests itself in unique ways depending on the person, there are many different options for therapy available. In fact, it is recommended that several different types of therapy are part of an autistic person’s treatment and care.

Physical therapy can help autistic individuals practice their gross and fine motor skills. Deficits in coordination, lack of posture control, and other issues with mobility, strength, and body awareness can be treated by physical therapists. Physical activities that involve sports, gymnastics, and other games can help people with ASD take part in a more specialized physical education program. These activities also help children develop play skills, which can then be applied to situations involving social interaction with peers.

Speech therapy can help autistic children improve their verbal communication. Often, the goals of speech therapy are to improve one’s

conversational skills, creativity with language, and understanding of words outside of a learned context. Jaw-strengthening exercises done with a speech therapist can help improve enunciation and singing short songs or reading aloud together can help a child become more confident and comfortable with spoken language. For autistic individuals who are non-verbal, alternative methods of communication are available. Many learn to use sign language, while others use electronic “talking” devices or picture boards to help convey their thoughts.

Applied behavioral analysis (ABA) is a method of treatment which consists of one-on-one time spent with a clinician delivering a personalized regimen of behavioral training targeted towards a certain goal, such as learning to greet a friend or write a name. This approach involves breaking down large tasks into smaller steps, rewarding the completion of each incremental task along the way. ABA is the most frequently

Occupational therapy can help children with autism gain more body awareness and stronger motor skills.

chosen option for ASD treatment. However, in recent years, controversy has arisen surrounding this therapy method.

The Autistic Self Advocacy Network (ASAN) contends that ABA is based on a cruel premise of trying to make people with autism pass as neurotypical instead of offering support to help autistic individuals live a happy, healthy, and a self-determined life.

In its early stages, ABA therapists would hit, shout at, or electrically shock patients when they exhibited “abnormal” behavior: that is, behavior that is overtly “autistic”, such as stimming or other socially inappropriate behaviors. Despite the severity of this program, it seemed like a better choice to most parents than institutionalizing them, and in fact, autistic children following this regimen tended to show higher likelihoods to spontaneously socialize and use language. However, it’s difficult to determine how applicable ABA is. A child might learn something with a therapist when there is an incentive to do so but choose not to apply the skill in a different social setting. A child might know when to look a therapist in the eye, especially with prompts and a reward, but still not understand the etiquette of eye contact in a social situation.

Nowadays, other variations of behavioral treatment are in development, such as pivotal response training (PRT) and the Early Start Denver Model (ESDM). Both are inspired by ABA but sidestep the more controversial aspects of it in favor of a more neurodiverse-inclusive approach. Instead of ABA’s one-skill-at-a-time approach, pivotal response training is playbased, initiated by the child, and targets multiple “pivotal” areas of a child’s development at once. ESDM involves a trained therapist using play routines to help toddlers and young children to learn new skills across many domains, such as singing a song while playing with a toy in order to encourage the child to vocalize.

Occupational therapy is also a useful treatment method for many people with autism. In this context, the term “occupation,” refers to meaningful and purposeful activity. An occupational therapy session involves direct client contact in a one-on-one or small group situation. “Occupational therapy has always emphasized what is meaningful to the individual,” details Liz Maruyama, OTR (Occupational Therapist Registered). “Each of our patients have their own unique qualities, even with the same diagnosis. Occupational therapists specifically design their sessions to recognize the patient’s preferences and to minimize barriers to their participation. We focus on the adaptation and resilience of the individual, rather than going by the book on treating their diagnosis.”

Activities completed in an occupational therapy session depends on the client’s goals for the day. If a client is struggling with hand-eye coordination, handwriting exercises or coloring activities can help with those fine motor skills. If a child needs help with body awareness or coordination, an occupational therapist might organize activities that exaggerate muscular feedback to the brain, such as resistive climbing or completing an obstacle course. Like speech therapists, occupational therapists can help clients with social awareness through cooperative games that encourage communication and help the client practice anticipating social interac-

tion. Ultimately, while the therapist is the professional in charge of these therapy sessions, the client is just as involved, if not more so, in the decision-making of the session plan.

HEALTHCArE PrOFESSIONS AND SPECIALIzATIONS wHICH DEAL wITH AuTISM & OTHEr NEurODEVELOPMENTAL DISOrDErS

Because many different types of therapy exist to help autistic people, it follows that many different types of professionals have experience with treating ASD. Examples of healthcare specialists who tend to work with autistic individuals include neurologists, child psychologists, psychiatrists, neuropsychologists, developmental pediatricians, and speech-language pathologists (SLP). Physical therapists, occupational therapists, and behavioral therapists also often work with people with ASD.

Therapy for autistic and neurodivergent individuals tends to be very hands-on and reliant on social interaction, and lockdown brought on by the COVID-19 pandemic drastically impacted the way many therapists and specialists conducted their sessions. Christine Jurjovec, OTR/L (Occupational Therapist Registered/Licensed), is a pediatric occupational therapist who manages The Balanced Kid, a therapy clinic with locations in Westmont and Naperville. Jurjovec has had to adapt her practice in light of the lockdown by offering teletherapy sessions. “We offered teletherapy to kids who were able to handle it, but for others it was very difficult to adapt a remote session to their needs,” said Jurjovec. “Some of our clients are non-verbal or require greater support than can be offered remotely. However, I and the other therapists checked in often with their family and gave them options for support at home.”

Jurjovec also traveled to her clients’ backyards or local playgrounds to do socially distanced in-person sessions. “I actually ended up turning the trunk of my car into a portable clinic,” she described. “I’d carry my therapy equipment in the back to bring them out during an outdoor session. The kids would bring their own toys as well, so I was able to engage them with activities like kicking their soccer ball to each other six feet apart.” Jurjovec continued, “Overall, I think the outdoor experience for these kids was a great change of pace. I had to get creative with the environment around us in our sessions, but given the circumstances, they showed a lot of promise in their progress.”

The Balanced Kid reopened in-clinic services in June. In accordance with current COVID19 policy, their waiting rooms are currently closed, and they have implemented a curbside dropoff and pick-up system for their clients. In-clinic sessions at The Balanced Kid tend to be play-based and relationship-based. With physically engaging equipment such as suspended swings and crash pads, children can stimulate their visual, auditory, and tactile sensory systems. In this multisensory environment, each child can participate in beneficial activities designed to improve their sensory processing.

FINAL POINTS

ASD is a condition that manifests itself in many different ways. The specific symptoms as well as the severity of the condition inform the type of treatment which yields the most benefit to a person diagnosed with ASD. As such, a treatment program involving a number of different therapies must be designed with the specific individual’s needs in mind. Whatever diagnosis and support a neurodivergent individual receives, the end goal should inherently be a happy and healthy adult life, unbound by ASD in a manner that is as autonomous and self-sufficient as possible.

To learn more about occupational therapy and/or The Balanced Kid, please visit www.thebalancedkid.com/contact.

Devita-Raeburn, Elizabeth. “The Controversy Over

Autism’s Most Common Therapy.” Spectrum.

Last modified August 10, 2016. https:// www.spectrumnews.org/features/deep-dive/ controversy-autisms-common-therapy/ “The Diagnostic Process.” Operation Autism.

Last accessed November 3, 2020. https:// operationautism.org/autism-101/ the-diagnostic-process/ Hye Ran Park et al. “A Short Review on the Current

Understanding of Autism Spectrum Disorders.”

PubChem. Last modified February 25, 2016. https://www.ncbi.nlm.nih.gov/pmc/articles/

PMC4766109/ Patricelli, Kathryn. “Introduction to Autism

Spectrum Disorder.” Gulf Bend Center.

Last modified August 5, 2016. https:// www.gulfbend.org/poc/view_doc. php?type=doc&id=8763&cn=20 “Physical Therapy Guide to Autism Spectrum

Disorder.” ChoosePT. Last modified October 23, 2019. https://www.choosept.com/ symptomsconditionsdetail/physical-therapyguide-to-autism-spectrum-disorder "Screening and Diagnosis of Autism Spectrum

Disorder.” Centers for Disease Control and

Prevention. Last modified March 13, 2020. https://www.cdc.gov/ncbddd/autism/screening. html “Signs of Autism in Adults.” NHS. Last modified

April 22, 2019. https://www.nhs.uk/conditions/ autism/signs/adults/