Impact of Autism and Coping Strategies in Indian-American Families

Impact of Autism and Coping Strategies in Indian-American Families.

Hari Srinivasan

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APA Poster

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Abstract

This paper explores the impact of autism and coping strategies amongst  Indian-American families living in the San Francisco Bay Area. Descriptive information on the challenges faced, coping strategies and a stress score (as measured by the Cohen Perceived Stress Scale) was gathered from 18 Indian-American parents of individuals with autism. The study finds that  high levels of stress amongst the ASD families (sample mean of 19.2) compared to the non-ASD families (population mean of 13). The study found that the age of the ASD family member does not seem to influence stress levels. There is however  a direct correlation between the severity of challenging ASD symptoms and the level of stress.  

This study suggests that if causes are better understood about the underlying physiological conditions for each specific case of autism, rather than classifying autism into one broad bucket, it may lead to more targeted treatments and better support systems could be put in place as well.

Positive outcomes for ASD individuals lead to less stress for families. Families also need more comprehensive support and resources in planning and supporting the needs of their ASD family member. Less stress for families leads to better outcomes for the ASD individuals.

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A Case Study in the Neural Basis of Communication Challenges

[Concepts in Sensorimotor Research]

An Assignment on Speech and Language 

The chapter on the Physiology of Speech and Language is frustratingly close to home for me as I am severely limited by both my expressive speech and almost very poor handwriting skills (along with other stuff). So I thought I would look at the concepts in this chapter in terms of a case-study of an impacted individual, namely me.

A Case Study in the Neural Basis of Communication Challenges

H is a young adult, who was diagnosed with Autism at age 3. His was a case of regressive Autism in which infants who seem to develop typically and meet developmental milestones,  lose much of their language and other skills soon after the 18 month mark. H exhibits both speech and motor (writing) challenges. This report is an attempt to delineate H’s communication challenges along with the current scientific knowledge about their neural basis.

H’s consistent expressive speech ranges to a dozen or so few key phrases. His articulation may be hard to understand for people not familiar with him.  He can repeat phrases and can sing, though his prosody and articulation are inconsistent.  In receptive language skills, he is well above age cognitively.  He was fortunate to learn typing on an AAC device as a mode of communication which has helped improve his quality of life. What is intriguing in this case is that the subject is very articulate when it comes to written communication, yet struggles with basic conversational speech. H’s communication challenges could broadly be placed under Apraxia of Speech diagnosis though there may be an overlap with other diagnoses related to communication. Since the loss of speech was at an early age, it is often referred to as Developmental Apraxia or Developmental Dyspraxia,.

Apraxia of Speech is an impaired ability to consistently produce and sequence the facial/oral muscles to produce the sounds and syllables required in spoken language. H has reported that he knows what he wants to say but he is not able to sequence that thought into actual speech at that particular moment. He also exhibits other oral-motor skill issues such as challenges in properly chewing food. Studies of brain lesions of patients with Apraxia of Speech provide evidence of impairment in the left precentral gyrus of the insular cortex. Other studies have confirmed the findings that “articulation activated the left insular insula.

Spontaneous talking requires information to flow from the sensory-motor association cortex into the posterior language area of Broca’s area. Then the act of talking itself requires some significant and rapid movement, sequencing and coordination of numerous facial and oral motor muscles (tongue, lips, jaw) along with the vocal chords. Broca’s area along with the inferior caudal left front lobe is implicated in, “memories of sequences of muscular movements used to articulate words,” (Carlson). In addition, Broca’s area is also directly connected to the part of the primary cortex that controls speech muscles. So Broca’s area seems to be a  major player in H’s case.

H does not seem to exhibit significant challenges in the precursors to spoken language - such as perception of present and past events, memories (with some occasional deficits in  short term memory), thoughts and the desire to communicate. Comprehension does not seem to be impacted, which seems to rule out Wernicke’s area as a source of concern. Wernicke’s area is however connected to Broca’s area through the arcuate fasciculus, also known as the Phonological Loop. This connection seems to play a role in the short term memory of speech sounds. H has exhibited difficulty in repeating back  longer strings of words or forgetting the speech sounds of words he’d just read aloud.

There are elements of aphasia involved in that H exhibits anomia (groping for words) in addition to difficulty with articulation.  H likens his word finding difficulty to a, “spotlight effect;”  when placed in a situation where  he is required to speak, adding to the “tongue-tied” result, which in his case is word-retrieval difficulty. If a beginning sound such as the sound “M” is given to him as a prompt, he may cycle through his mental dictionary of words starting with that sound. For example if therapist Michael (vs Michelle) is at the door, H may greet him as, “Hi Michelle,” and a few other names, before arriving at the correct, “Hi Michael.” The word retrieval difficulty ranges from mild to significant on any given day.  H’s history has included EEG’s showing mild disturbances in the temporal lobe. Studies of brain lesions have linked the temporal lobe to the word-retrieval issues.   

Studies have found parallels between spoken language and  written language. For example H, exhibits difficulty in the prosody (rhythm, tone, emphasis) of spoken language which is believed to be controlled by neural connections in the right hemisphere. In his handwriting attempts too, there is disruption in the motor organization of the letters and spacing on the page, believed to be controlled by the dorsal parietal lobe and the premotor cortex. The act of handwriting activates the dorsal parietal lobe, the premotor cortex and the primary cortex.  H exhibits poor motor memory of the motor sequences of space, size and spacing of letters that is required for handwriting. Both attempts at speech and attempts at handwriting therefore are labored and prone to errors. Communication via typing has somewhat simplified the motor aspects of forming letters for H as that requires  keys to be pressed as compared to gripping a pen and drawing letters.

The overarching nature of the Autism Spectrum, with little knowledge of its physiological underpinnings means that there could be many other factors which play into the communication challenges. What is intriguing in H’s case (and frustrating for H himself) is the huge chasm between his motor ability (both speech and writing) and his comprehension and cognition skills.  Basic communication, especially spontaneous speech, is however a critical aspect of daily human functioning and hence its lack greatly affects the individual’s quality of life.  Our scientific understanding of neural workings, unfortunately have not yet reached a level where it  translates into meaningful treatment manipulation.

Psych 22: Biological Psychology

Winds of Change

Winds of change 

Mangled Cognitive distortions

Oppressive muddy skies 

Swallowed by emotional whirlpool 

Lost anchor to the gentle breeze

Tornado rages on

No respite...

Blazing an unwanted path

OCDs gleely plunge in. 

Anchor buffeted about 

Login needed anon

Try, try, But how?

Drowning mind needs to stretch

An anchor out of reach

A tsunami at sea, tailspin 

Autism and the ANS

A writeup I did for my college Biological Psychology Course

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Hari Srinivasan

Psych 22: Biological Psychology

Autism and the ANS

Abstract

Autism as a spectrum disorder is still not fully understood as it comes in many variants which indicate varied underlying psychological basis. This paper discusses the role of the nervous system in Autism, specifically the Autonomic Nervous System. While research is underway in the path towards its biological underpinnings, a much better understanding is required before it can translate into meaningful treatments in order to improve the quality of life for the affected ASD population.  

        Autism and the Nervous System

Autism Spectrum Disorder (ASD) is a lifelong neurological disorder with its onset commonly in early childhood. The DSM-V classification of ASD is largely based on observable external behaviors such as  deficits in social-emotional skills, repetitive behaviors, and communication skills. However the condition also seems to be accompanied by a whole host of co-morbid conditions such as ADHD, mood disorders, sleep disorders, intellectual disability, obsessive compulsive behaviors, and sensory dysregulation. Epigenetics could also play a role wherein the environment affects gene expression. A mix and match of varying degrees of severity in these parameters result in huge numbers of people that fit this spectrum disorder. One in every 110 children is being diagnosed with ASD in the US today . The severity ranges from individuals who are non -verbal and/or with many challenging behaviors to those who are barely distinguishable from their peers.

         

There has been an increasing focus on the role the nervous system plays in the physiological underpinnings of autism. For instance, my personal experience as a person in the ASD spectrum points to the inability of the ASD individual’s nervous system to handle environmental input as the probable cause behind the atypical “stim” (ie: self  stimulatory) mannerisms. An example is walking into a crowded room and hearing every conversation in the room at the same volume, and being unable to filter out the ones the individual needs to focus on.  The ASD individual may resort to atypical behaviors like flicking fingers in front of his eyes, generating their own verbal sounds or even banging their hands on their heads, all in an attempt to drown out the environmental visual and auditory cacophony. Social and communication skills are part of a typical person’s toolbox in coping with stressful situations; deficits in these areas often prevent an easy resolution for the ASD individual, heightening the problem. So sensory stimulation can result in hyper-arousal, hypo arousal or sensory seeking behaviors in ASD individuals.  

My personal observation and experience as an individual on the ASD spectrum has also been that of an unclear sense of body-schema  which could well be the cause of the constant movement exhibited by many on the spectrum.  It is almost as though the brain has to continually ascertain the position of the parts of the rest of the body in space and time.  The continual movement of the body (a movement disorder) could be an adaptive effort to keep this connection between brain and body alive. Without the movement, it would be like a brain that was lost as it did not feel attached to the body. A sense of panic could well set in when waking up in the dark at night and feeling body-less, thereby affecting sleep patterns and mood. According to the Subiaul et al (2007), “ It is well known that individuals with autism have poor body schemas and suffer from impairments in motor functioning, and planning.”  Ergo, ASD individuals exhibit atypical Autonomic Nervous System activity,

         

The Autonomic Nervous System (ANS) is part of the Peripheral Nervous System.  The ANS regulates our internal organs thus involving a lot of actions that are involuntary in nature. The ANS has 3 parts  - the Sympathetic Nervous System, the Parasympathetic Nervous System and the Enteric Nervous System.  The Sympathetic, “controls functions that accompany arousal and expenditure of energy,” while the parasympathetic, “controls functions that occur during relaxed state,” (Carlson, 2013). Many studies have backed observations about atypical ANS activity in Autism, such as the study by  Schaaf et al. (2015) which found that  ASD participants exhibited,  “a different pattern of parasympathetic activity”.  Changes in heart rate (specifically RSA or Respiratory Sinus Arrythma) in response to sensory stimuli is an oft-used measure of Parasympathetic activity in studies due to its non-invasive nature while variants of EGC’s are needed for measuring sympathetic activity (Schaaf et al., 2015).  Schaaf et al. also point to other studies that show atypical arousal levels in sympathetic system in ASD individuals. Interestingly the sympathetic activity  decreased in some studies and increased in other studies,  leading researchers to conclude that  ASD individuals would, “engage in self-stimulatory  or active sensory seeking behaviors to either dampen or increase sympathetic levels in order to calm or arouse themselves,” respectively (Schaaf et al, 2015).  Even as scientists and researchers agree more and more on ANS dysregulation in the ASD population,  “the exact nature  of the ANS dysregulation is [still] not clear,”.

         

Such self stimulatory mannerisms and movement issues, being almost involuntary in nature, pose one of the biggest challenges for an ASD individual and their families as they are considered socially inappropriate and make societal inclusion and acceptance all that much harder for the ASD individual especially as an adult.  It is clear that further insight into understanding the biological underpinnings of the ANS dysregulation in Autism is necessary before it can translate into meaningful and targeted treatments for the ASD population.  For instance, the neurotransmitters,  acetylcholine and norepinephrine play a major role in the ANS; the manipulation of which via pharmaceuticals could potentially play a future role in treatment and thereby improving the quality of life for ASD individuals. In the meantime, many in the Autism population continue to muddle through their overwhelming sensory environment hampered by a dysregulated Autonomic Nervous System.  

A Frame of Reference

A Frame of Reference

My environment and I have a curious relationship. My somatosensory system is quite out of whack for the most part in trying to cope with the zillion gigabytes of information that is thrown my way. My system is simply overwhelmed most of the time producing in its wake a myriad of emotions, anxiety, obsessive compulsive and impulsive behaviors, and atypical behaviors.  Combined with deficits in speech, fine motor skills and some body coordination issues, the result is my confusing spectrum diagnosis of Autism with a  comorbid diagnosis of ADHD thrown into the mix. At the same time I am pretty intelligent cognitively. I can use my right and my left brain quite effectively, being good in both math/logic/science and creative expression.  It is as though my cognition and my motor skills each travel on their own separate path. I am tossed around in a sea of emotions while trying to cope with the extremes of my challenges and strengths. It is only to be expected that an interplay of all these factors play a role in determining my personality, learning styles, self-concept, self-esteem and conflict resolution styles.

The  learning style assessment seem to correctly reflect my tendency towards the Kinesthetic and Visual.  Touch and movement helps in keeping my body grounded and organized, in that it keeps the connection between body and brain alive.  In my mind too, I tend to form tactile images and memories. Many times  however, my physical movement can be too much wherein it becomes distracting rather than conducive to learning; it really messes with my short term memory. Too much movement is exhausting. Visual input is especially important as it is tied into my proprioception (body position) and vestibular systems, so much so that darkness or  closing my eyes can leave me feeling lost.  I am struggling with the closing eyes part of learning meditation (to help calm me).  Waking up to darkness at night can at times bring on a sense of panic. The visual system is the one I use most for academics. My hyper-sensory system along with a multi-tasking brain allows me to pick up nuances beyond the obvious, complete the required analysis, almost like a virtual networking map,  and sequence the thought in mere moments,  possibly contributing to my intelligence. During learning, my mind has a simultaneous approach wherein dendrites creep into the main concept and analyze details even as extra sensory input is looking outside and beyond the concept.  Conversely, when creating, neurons almost massage a thought with charges such that it bubbles out into  bigger cohesive ideas. The creative process is an absolute rush. I usually read very fast, kind of glancing at each page. My lack of motor dexterity however means that it takes forever to slowly type out the solution or my thoughts (like the proverbial tortoise) which my brain has reasoned out in mere seconds (the hare) , much to my chagrin. Auditory input is the hardest to deal with; the environmental cacophony at times  aggravating the disorganization in the brain. But auditory is useful in learning pleasant sounds like music,  sanskrit slokas or complex mentally challenging material- I can learn these often just by listening and do not need written material. My non-existent handwriting skills, and my reliance on support staff to make notes for me, means I often have to rely on what I hear and see, and use mental mapping to organise ideas and solve problems. Though I am reasonably good at math, my handwriting deficits also means I have to rely on special software for math symbols, in addition to not be able to do rough work on paper for math, which makes me nervous during testing time.

My Kiersey/ Myer-Briggs personality scores were equivalent for Introvert-Extrovert and higher for Intuitive (vs Sensing), Feeling (vs Thinking) and Judging (vs Perceiving) . My major issue with the Kiersey scoring was that I was torn between the ability of my brain and the inability of my physical responses when answering the questions, so I was wavering back and forth. Hampered speech and other challenges means  I am unable  to externally perform many tasks; I am still dependent on support staff to get much of my life going. My thought processes on the other hand are not dependent on motor skills, so they fly on a different plane. My disability forces me into an  introvert role though I am mentally very people-oriented.  Again though I love the spontaneity of a Perceiver (new neural pathways!),  I am forced into a Judger role as predictability and organization are better for the resultant anxieties of dealing with my numerous challenges. I tend to be an idealist but lack the ability to implement much of the thought behind it.  I felt the test was lacking somewhat as a true measure of my personality.

My Multiple Intelligence scores were above 4 for  Logic/Math  and Language  and above 3 for Music, Self, Nature and Social, with Kinesthetic at the bottom with a score of 1. This was not surprising as Math, Language and Music patterns are all brain activities and I would be good at them. However the Birmingham Grid showed Kinesthetic at the top which was odd, as my crazy body movements are far from endearing,

I have huge issues with both Self Concept and Self Esteem. Even after I learnt to type and was able to communicate that I was capable of more than a dead-end special ed classroom, my school district was reluctant to mainstream me, forcing a homeschool route, rather than waste years litigating. What hurt intensely  was the very people responsible for nurturing and educating me, were denying me education in addition to the many social opportunities that my typical peers take for granted as part of school life.  Ironically, I ranked at grade 12 for math and college level for language in the psych-ed assessment done by the charter school. The most positive accolade in my school years was the trip to Carnegie Hall in New York to receive a Scholastic National Gold Award for my writing (the publication with a forward by Nobel Laureate Elie Wiesel that followed was an unexpected bonus). I especially liked the accompanying letter from Scholastic which stated, “You have demonstrated that you are an accomplished young writer and that you have the potential to do great things, no matter what profession you pursue.” More than anything, it was an acknowledgement of my talent and potential. I have managed to garner some 44 writing awards for writing since and even made it to high school valedictorian and national honor society. I even managed to work on a national archives project writing project that will be displayed at the Smithsonian in addition to being the editor for a braille periodical. The writing awards and academic awards are a balm but I seem to be a one-trick pony at the end of the day. I can be a great writer and have brilliant academic papers but the rest of my life is still a mess. I am fearful about the uncertainty of my future. I worry about the undue stress I place on my family.  I worry about my health, the number of meds I take and their long term implications.  I fear rejection by others and being alone. Support staff turnover is high as my behaviors are considered challenging to work with, which makes me wary of forming attachments as they may soon leave anyway. Subconsciously, I feel I almost act out to facilitate their departure and lessen any potential attachment. I long for interaction with actual friends, not just the ‘likes’ of 200 virtual facebook friends. Hampered skills due to my disability heighten anxieties and stop me from being productive and waste much of my days.  I have regular Cognitive Behavior Therapy  just to help me deal with my insecurities,  anxieties, meltdowns and help me think more positively. My emotional roller coaster is not an easy ride. Ironically, I  scored middle of the road on the self-esteem test, which I was felt was due to the questions themselves such as whether I could list my positive and negative qualities. It is not as though I don’t have some great strengths. I have been an inspiration to parents of other children with Autism. I’ve also been fortunate to have the handful of positive people in my life looking out for me and digging out opportunities for me. But I worry I will drive them away due to the excesses of my challenges. In essence, my self-esteem and self-concept suffer due to the chasm like gap between my significant strengths and equally significant challenges.  

I have to agree with the my high score in Avoidance in the Thomas Killman Conflict Mode Assessment. I overthink and overanalyze the situation to an such extent that it ends with an unfavorable outcome in my mind. Which means I will do my best to avoid the conflict if possible. Avoiders are emotional to boot and I am all over the map with emotion regulation. Communication deficits and lack of coping skills put their oar in as well. What was intriguing to learn was that the Avoidance category often have had a childhood with lots of putting down and negative experiences - that’s special ed in my case.  I have overheard all kinds of conversations in special ed classrooms in front of us as though we didn’t even exist. Autism does not mean deaf! The content has at times been mean and critical of us. No child should be subject to that.  I’ve even had two elementary level teachers remark in my presence that they did not want me in their class. The saga apparently continues and more Berlin Walls are constructed in front of my eyes.   Perhaps avoidance may be a good strategy in many of the frustrating situations I face; the other extreme alternative being excessive anxiety and emotional meltdowns. I apparently have a lot of personal baggage to overcome and will be facing a lot of naysayers all my life who will not look beyond the external disability.  I want to make something of my life. I want possibility to turn into viable opportunity. I want  to make my skills translate into something meaningful and help me and others like me along the way. Competition was my next highest score on the Thomas Killman conflict assessment, but inability due to the deficits in physical and communication skills often end in frustration. I feel I often am forced to settle for second best which adds to the sense of frustration.

I am hoping that meds and different therapies and treatments will help improve my emotion regulation, speech and sensory/organization issues. It has been 18 years and I am waiting on researchers to come through for me.  I hope that attempts at CBT, yoga, meditation and other therapy will also ultimately pay off and help me attain some measure of living at peace with myself, my environment and people around me.  I want my life to be useful and meaningful even as  I crave equanimity, the ocean of tranquility.