Globally, Autistic Pride Day is celebrated on June 18 every year. On this occasion we present to you two very interesting articles that highlight how integrating the elements of palliative care help improve the quality of life of autistic individuals and their families.

Autism Spectrum Disorder and It’s Management

Dr. Procheta Mahanta, Assam Don Bosco University, Guwahati

Dr. Mahanta

Autism Spectrum Disorders (ASDs), is a phenotypically heterogeneous group of neuro developmental syndromes, characterized by a wide range of impairments in social communication and behaviors. ASDs, similar to other neuro-developmental disabilities, need to be assessed by child mental health professionals such as a child psychiatrist or a clinical psychologist; and may require additional inputs from a multidisciplinary team of special educators, occupational therapists, speech and language therapists.

According to DSM 5 (Diagnostic and Statistical Manual of Mental Disorders), the current specific criteria for ASD diagnosis are drawn from three domains i.e.

  1. Impaired social interaction such as impairment in the use of non-verbal communicative behaviors, lack of social or emotional reciprocity etc.
  2. Qualitative impairments in communication skills as shown by delays in, or lack of, language acquisition, inability to initiate or maintain a conversation etc.
  3. Presence of restricted and repetitive patterns of behavior, interests and activities such as, hand flapping, rocking movement, unusual and restricted interests etc.

Intellectual disability could be a co-morbid condition. In order to meet the full criteria for the diagnosis of autistic disorder, the individual must exhibit a total of six or more characteristics from the three domains mentioned above.

However, it is crucial to bear in mind that each individual on the spectrum differs from ananother and may exhibit different characteristics. Thus, for effective management, it is important for clinicians to understand the uniqueness of every diagnosed individual with ASD.

The primary goals of psychological management are to make the person adapt to his or her environment despite the core features of the diagnosis and help optimize functional independence and quality of life. The distress of family members’ are also addressed during the therapy sessions.

A few of the strategies that are implemented in the management of individuals with ASD are:

  1. Applied Behavior Analysis where the aim is to increase and maintain desirable adaptive behaviors, reduce maladaptive behaviors and teach them new adaptive skills;
  2. TEACCH method emphasizes improving their skills and modifying the environment to accommodate the deficits;
  3. Picture Exchange Communication System (PECS) is used to teach them to initiate a picture request and persist with the communication until the partner responds.

With structured and organized sessions, individuals with ASD can be empowered to gradually learn adaptive skills that would facilitate their independent and daily living skills.

Falling sick is naturally frustrating for a typically developing individual; one may exhibit irritability, feel upset when one is not doing well physically. However, we can communicate our distress in an adaptive manner. Unfortunately, this might not be the case for an autistic person. They may face difficulties while expressing their physical and emotional distress in an adaptive way, paving way for further increase in behavioral issues.

A routine check-up to the hospital or getting hospitalized, provokes a lot of anxiousness among these patients as they venture into unfamiliar environments filled with unfamiliar faces. Autistic individuals usually prefer and persist on maintaining the exact same routine. Thus, waiting in a hospital to consult a doctor, cancellation or rescheduling of appointments, having to compromise their daily activities if hospitalized, could be sources of distress for them. Many such individuals also have neurological issues and could be hyper sensitive to light, sound, temperature etc. thus, making it extremely challenging and distressing for them to undergo medical procedures such as MRI scan or even a simple blood pressure monitoring procedure. Conducting a physical examination, taking the case history or even being able to provide treatment becomes a challenge when autism is co-morbid with ADHD. Thus, psycho social management is a prerequisite to the overall management of an individual diagnosed with ASD. It is also worthwhile to note that when an individual on the autistic spectrum is hospitalized due to a concurrent medically illness such as cancer, there may be additional layers of challenges to engage such an individual in complex treatment procedures; which may also be accompanied by co morbid physical conditions such as seizure, sleep disturbances, gastrointestinal disorders, obesity etc. A few of the safety concerns to be watchful for during their hospitalization includes wandering, self injury, pica and pulling out the IV tube (Kopecky et al. 2013). Thus, it is crucial to address the needs and distress of hospitalized individuals with ASD.

With limited awareness around developmental disorders, rehabilitation facilities are still lacking in India. Physicians must therefore prepare themselves to witness undiagnosed cases of ASD and train to achieve a basic understanding of developmental disorders such as ASD, to facilitate appropriate referrals to rehabilitation experts. Of course, a multidisciplinary approach to treatment is always effective. As already mentioned, every individual within the spectrum exhibits different symptoms and presents with varying levels of severity making it extremely important for a psychologist to take a detailed case history and thereafter ensure that customized care plans are drawn up.

Just like any other patient, it is also crucial for a clinician to explain the diagnosis at a developmental level, appropriate for an individual. Apart from verbal communication, PECS can be used especially for non-verbal individuals, where picture cards would be used to convey the message. Similarly, we can work alongside a patient at each step of the treatment using verbal communication, gestures or pictures.

Social stories seem to be an effective way to prepare adolescents and adults for a hospital visit, medical examinations, procedures, hospitalization etc.. When the patient is extremely distressed and restless during an examination or procedure, it is better for the clinicians to distance themselves so that the patient can calm down. The clinical team can also prepare and make available a list of activities or things that the patient enjoys doing (e.g music, puzzles, soft objects like play dough/ slime etc.) so as to distract them during procedures. As autistic individuals may express distress within unfamiliar environments, it would be wise to allow (to the extent possible) the primary caregiver to accompany the patient through any examination/procedure. This would also allow physicians to take the help of primary caregivers to communicate effectively with the patients.

Last but not the least, it is very important to ensure that the well-being of the primary caregivers, in most cases, the parents. They should be made part of the management. The constant worry about their child’s health, managing their child’s behavioral issues, keeping themselves in abreast of all relevant medical information, managing the financial pressures to meet the medical requirements, providing care to the other family members back at home, dealing with work pressure etc. exhausts them to the core. Thus, it is important for the team of clinicians to also monitor the parents’ wellbeing and bring them into the ambit of psychotherapy when required.

Autism Spectrum Disorder is a world in itself; and all clinicians should be aware of the nuances of dealing with patients on the spectrum. Patience, dedication, respect for the individual and a multi disciplinary effort are the pillars of well-being and effective management of individuals with ASDs. Let’s therefore make the world inclusive!

About the Author: Dr. Procheta Mahanta is a Clinical Psychologist and an Assistant Professor at Assam Don Bosco University, Guwahati

Don’t tell me that the sky is the limit, when there are footprints on the moon!

Ms. Anupama Srivastava, Agra

Sarthak along with his mother on his 18th birthday, wearing a shirt that he chose

It was in January 2009, that my son Sarthak (5.5 years old) was diagnosed with Autism. I went into a state of shock and hopelessness when I learnt about the diagnosis. Watching me crumble, my mother who had accompanied Sarthak and I to NIMHANS (in Bengaluru) on that dreaded day looked into my eyes and said, “No, Don’t worry, he WILL learn everything; and one day he WILL do everything himself”. It was her strong conviction and the quote “Where there is ruin, there is hope for future” by Rumi, which gave me the strength to get back on my feet and also made me promise to myself that “My son would NOT be a burden on the society, and that he would INSTEAD BE a beacon of light for others.”

Without exception, autistic people are in a world of their own. They tend to avoid eye contact and are self actualized persons as per Maslow’s hierarchy of needs. Some individuals also have otherco-morbidities such as ADHD, anxiety, fits, sleep disorders and depression, caused due to a sensory overload; the combined effect culminating in frequent meltdowns. People with Autism are detailed thinkers due to which they cannot see the bigger picture. They find it challenging to understand context, humour and sarcasm. Some of them are visual learners while most of them prefer routine jobs. Since every individual has different symptoms, it is known as Autism spectrum disorder.

Once diagnosed, we started sending Sarthak for early intervention therapies such as occupational therapy, speech therapy and sensory therapies. I became a Reiki grand master by December 2009 to heal my son. Spiritual healing is an expansion of our consciousness and I believe that my son is my guide on my spiritual journey. Since he also had ADHD, I used to draw Rama symbol of Karuna Reiki on his root chakra to help ground him. After persistent efforts, Sarthak became potty trained at the age of 10 and toilet trained at the age of 16.My efforts to care for him made me learn various spiritual healing techniques such as reading Akashic records, Soul body fusion and Access bars consciousness healings. I even embarked on a 2 year full time Diploma in Special Education from Action for Autism, New Delhi, to learn more about autism; all in an effort to make my son more independent. At 18 years of age, he currently needs physical and verbal prompts to brush his teeth, take bath and clean himself up after bowel movement.

I learnt through observation that autistic children must be sent to either special schools or integrated schools, and not to inclusive schools. It was then that I realized that he had the opportunity to pursue his education non-traditionally that was not bound by exams or other set formats. His special educators had told me that Sarthak was an auditory learner. I used to feel so proud to hear him flawlessly hum the tune from the Airtel advertisement and the Bollywood song Masakkalli Masakkalli; But then he stopped for the last 3 years. I therefore found a music therapist who sent me healing audio files that were to be played for him at specific times during the day. Since then, my son has started to hum songs again as a way to express his feelings. My pursuit towards empowering my son led me to another spiritual healing technique called DNA reading and DNA clearing, which I am learning now to heal my son. I hope that all these efforts will enable my son to become more expressive. Sarthak is able to grasp music really quickly and my vision therefore is that he becomes a musician one day. I have already bought a Casio player for him so that the day his fingers become strong enough to play the keyboard, we will train him to be a professional musician.

Children with autism are fortunate to find happiness in the simplest of life’s pleasures. Sarthak is elated when he receives new clothes, eats Kashmiri veg pulao or south Indian food. We give him the privilege of choosing his own clothes when we take him to purchase them. The other time when he truly lights up, is when he his served a bowl of fruits. I wish you could see him filled with glee when he is served pomegranates (his favourite fruit!).

It is only natural for parents with austic kids to be depressed and worried about their child’s future. Some of us may even feel that such children will eventually either work in blue collar jobs or end up living in an assisted facility while being a burden to the society. Being the mother of an Austic child myself, I wish to bring your attention to several initiatives which reassures me that the situation is not as grim as it once was, and that THERE IS HOPE and a future for our kids.

Volunteers from SAP hadinitiated Prayas lab in Indiranagar, Bengaluru, in collaboration with an NGO, Enable India, to train persons with Autism in software testing. Additionally, they also empower them with other life skills such as how to live in a P.G. independently without support from family or others, how to groom one’s self, how to use the public transport system to commute to office or how to communicate with one’s colleagues by maybe simply putting up a sign board on one’s desk to say “Just because I am not looking at you, doesn’t mean I am not listening to you”. Post training, SAP absorbs a few students from each batch into their own company. The teams who work with such people are also sensitized on how to work alongside such people.

It is also hearting and encouraging that companies like Lifestyle, Lemon Tree Hotels and Big Bazaar have also started employing autistic individuals. Some persons with Autism have excellent concentration while performing in routine jobs like Software testing, while a few others have the ability to envision 2D blueprints as 3D blueprints. I believe that such people have the potential to become excellent Animation and Graphic Design experts or even Architects. Potential employers must appreciate and recognize the strengths of such employees: excellent work ethics, focused, punctual and dedicated employees with zero absenteeism.

So, don’t lose hope and stay strong. I found strength in the below quotes, and I hope you do too!

  • “For every Vision there is a Provision for its fulfillment”
  • “A mighty oak is just a nut that held its ground”
  • “The day came when the risk to remain tight in a bud was more painful than the risk it took to blossom” – Anaïs Nin

About the author: Ms. Anupama is an extremely positive person who wears multiple hats. She is an autism mom, a spiritual healer, a life coach and a special educator based at Agra.

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