In the May 2013 Edition of DSM 5th Edition (DSM-5), the realm of restricted, repetitive patterns of SENSORY behavior, interests, or activities has been expanded to include abnormalities in ‘sensory processing impairments.’ The objective of adding this to the behavioral domain was to help clinicians perform diagnosis more accurately, thus identifying cases requiring treatment with greater accuracy.
The DSM-5 is a living document which provides a common language for clinicians, patients, and researchers to communicate information about symptoms, as well as to accurately diagnose mental, behavioral, and personality disorders. Retrieved from: https://www.steppingstonesca.com/single-post/2016/09/22/A-Quick-Guide-To-The-DSM-5-Criteria
< My Thoughts > “perform diagnosis more accurately, thus identifying cases requiring treatment with greater accuracy.”
As a parent and/or teacher, you will become a trained observer, learning to recognize ‘sensory impairments’ in your child or student. This in turn, will help clinicians find just the right diagnosis, treatment, and intervention for that child.
Remember that the DSM-5 is a ‘living document’, that is because the ‘bar’ gauging ‘severity’ is forever changing. Your child, student, or patient is also forever changing. As observers, you are identifying the ‘current’ pattern, behavioral crisis, or behavioral activity. Just saying.
The National Institute of Health (NIH) website tells us that maladaptive behaviors such as ‘stereotyped behaviors’, i.e. sensory impairments, are predictable as a ‘severe sensory feature’ of autism. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3727194/
Banda, et al. (2014) in a review studies of individuals with Autism and Sensory Impairments, having the overlapping condition/characteristics of sensory impairments. These impairments varied in the levels of severity, as well as the number of impairments; to include – vision, hearing, and/or communication. In addition, four of the studies targeted problem co-existing behaviors such as self-injury, aggression, vocal disruption, and self-stimulatory activity.
Fuentes, et al. (2010) talk about studies using questionnaires which revealed general differences in sensory experience of auditory, visual, tactile, and movement processing in those children with and without Autism. This study noted that there was no significant difference in IQ between the groups.
They found that the sense of position and movement of parts of the body, proprioception, played a crucial role in successfully interacting with the environment. The general tone of responses from study participants was conveyed in these two statements –
“I could not point at objects for many reasons. The most important reason is that I had very little sensation of my body.” (Tito Mukhopadhyay), And, “ In childhood I had real problems in knowing exactly where my connectional limbs and trunk were… where they would move to next, and even more frighteningly, where they had last been positioned.” (Lucy Blackman).
Sensory impairments in the ASD group were significantly worse than those in the group without an autism diagnosis. Researchers said that successful ‘skill’ performance on the PANESS assessment involved good sensory processing and rapid execution of finely controlled movements; such as tool use and skill imitation.
< My Thoughts > “the PANESS assessment…”
The official title of the PANESS assessment is Positive And Negative Syndrome Scale; Positive meaning ‘productive’ symptoms, and Negative to mean showing ‘deficit’ features. According to an online interview with Lewis Alan Opler, Long Island University, one of the co-authors of PANESS, said that their PANESS assessment is still valid, reliable, and user friendly instrument. An accompanying comment by Bajouco, Hospitais da Universidade de Coimbra, stated that for another assessment of negative symptoms of diminished emotional expression, and motivation/pleasure one could use is the Brief Negative Symptoms Scale (BNSS). Retrieved from: https://www.researchgate.net/post/What_is_the_best_alternative_to_PANNS_in_assessing_psychosis
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According to Evans, et al. (2012), symptoms of sensory impairment features can also be categorized by how one responds or reacts to, and ‘novelty awareness’ of, environmental stimulus. A persons’ reactions could depend also on their sensory threshold, temperament, physiology, genetic disposition, or even their environmental parenting. Smiles.
They give an example of how some cannot tolerate the ‘buzzing’ of a computer. That those individuals with highly active self-regulation techniques will simply move away from distressing stimulus.
As a teacher, that could explain why some students cannot tolerate what they hear as the ‘buzzing’ and/or ‘flickering’ of overhead fluorescent lights. Then in Middle School, when the sensory impaired student tantrums after entering ‘computer lab’ we should NOT ask ourselves, “Why?”
Sonny can be rooms away and come ‘tantrumming full out’ the second I turn on the computer. My first thought was that he didn’t want to share my attention with that ‘evil’ computer… but then I realized it had more to do with his intolerance for the computer’s emitting lights and sounds.
Sometimes, I can place an oscillating fan on the floor by my chair and he will accept that as a distraction, but only for a limited time. And, some days his tolerance for the buzzing seems to approach some sort of ‘needed stimulation’ and he likes to stay within the range of the stimulating buzzing. Complicated guy. Smiles.
Denman, et al. (2016) say families of a child diagnosed with autism can find themselves trying to understand their child’s behavior while on the waiting list for ‘formal diagnosis.’ That this ‘parental making sense’ of behaviors effects parenting. They say that confusions can also occur with children who have insecure attachment patterns and sensory impairments.
Also, that it is hard for parents to understand how a slight change in routine can cause a child with sensory impairments to have a ‘meltdown’ in the middle of the street. At the same time, parents are concerned about the need to present a ‘positive identity’ to others; while allowing ‘face saving’ while around friends and family members.
REFERENCES used here are:
Banda, D., Griffin-Shirley, N., et al. (2014). A Review of Intervention Studies Conducted with Individuals with Autism & Sensory Impairments; Journal of Visual Impairment & Blindness; July/August, p. 229-307.
Denman, K., Smart, C.,Dallos, R., Levett, P. (2016). How Families Make Sense of Their Child’s Behavior When on an Autism Assessment & Diagnosis Waiting List; Journal of Autism & Developmental Disorders; V46, p3408-3423.
Evans, C., Nelson, L., Porter, C. (2012). Making Sense of Their World: Sensory Reactivity & Novelty Awareness as Aspects of Temperament & Correlates of Social Behaviors in Early Childhood; Journal of Infant & Child Development; V21, p503-520.
Fuentes, C., Mostofsky S., Bastian, A. (2010). No Proprioceptive Deficits in Autism Despite Movement-Related Sensory & Execution Impairments; Journal of Autism Developmental Disorders; V41, 1352–1361.
< My Thoughts > What I am offering here is a powerful story which may capture in a moment, what it is like to have this experience. (Child’s Sensory Impairments can look like a ‘bad kid’ or ‘bad parenting’ to outsiders.)
I Wish I Were Engulfed in Flames: My Insane Life Raising Two Boys with Autism by Jeni Decker; eBook 2011 Edition; with < My Thoughts > by Sara Luker >
Focused Excerpts from the book (22% indicates location in the Kindle version of the book, instead of page numbers.)
22% I’d stopped at the drugstore to pick up a new prescription for Jaxson, the third in a series of medications to try and help prevent his aggressive behavior, particularly at school.
23% When I am in the store and my child suddenly rolls into tantrum mode, kicking and screaming and such, it’s not very helpful if a passerby says things like, “He needs is a good spanking,” or “You wouldn’t see my kid acting like that.” I want to say, “Go ahead and hit him, see if it works.” Or, “Bye, honey. This nice man is gonna take you home. Have fun…”
Okay, so I don’t actually do this. But I really, really want to.
24% I maneuvered to press Jaxson against the car with my body, fishing for my keys.
It took ten minutes to unlock the door and push my screaming child inside. I closed the door and stood there for a moment, taking a look at the nice bruise on my arm that was already forming, his little teeth imprints clearly in the center.
Suddenly a nice lady handed me the bag I’d dropped and smiled as Jaxson wailed inside the banging on the window, his voice only slightly muffled by the closed windows.
“He’s autistic,” was the only thing I could think of saying. “Yeah, I kind of guessed there was something going on there besides the regular old tantrum.
Can you get home okay?” she asked. My eyes filled with tears. “Yes, thanks. You have no idea how nice it is to have someone not judging me right now.”
“I think I can guess,” she smiled and then left for her car.
That day, I met an angel outside the Rite Aid drugstore.
< My Thoughts > “…You have no idea how nice it is to have someone not judging me right now.”
Again, the the parents in the Hoogsteen & Woodgate (2013) study felt that their community members were unaware and uneducated about the challenges they faced when bringing their child with them when they shopped or visited in the community. Such as when the negative characteristics of autism were displayed,– tantrums, yelling, disruptive behavior, meltdowns, screaming, physical violence towards themselves and others.”
“Most people look at you and they just think he’s a bad kid… because he looks normal.” “What they think they see is bad parenting, a bad uncontrollable child, or just a rude disruption to their shopping experience.
Parents participating in the study shared how difficult it is to feel that they are on their own… that most people out there are so judgmental and frustrating. One parent says “You get home, and you’re just destroyed because it replays in your mind. How do I make them understand?”
REFERENCES used here are:
Hoogsteen, L. & Woodgate, R. (2013). The Lived Experience of Parenting a Child With Autism in a Rural Area: Making the Invisible, Visible; Pediatric Nursing; Vol. 39:5.
Sensory impairments will interact with autism to produce a particularly difficult developmental path. Appropriate support in education, social care, and vocational training is key to a person’s successful outcome. Retrieved from: https://link.springer.com/referenceworkentry/10.1007%2F978-1-4419-1698-3_413
< My Thoughts > “…Appropriate support in education…”
As a teacher, it is difficult, if not impossible to support a student appropriately, when one does not have the full picture (diagnosis) of what is going on with that child. For instance, I know of a child who started Middle School as a visually impaired student, who was placed in a Special Education program because there was no other placement for him.
As the first semester progressed, the teacher began to understand that the student had other issues impeding his academic progress. But trying to get ‘the powers that be’ to test him for a possible learning disability was nearly impossible. “He’s visually impaired” they said, “of course he is having learning problems.” “Wait! What?” “He can’t have both?” You are professionals, it’s too easy to say that he only has one diagnosis!
Pawletko (2002) tells us that as a former teacher of the visually impaired she was struck by the fact that certain students did not respond to typical interventions. They often engaged in stereotypic behaviors, like also appearing to be deaf. But, she said, rarely was it ever asked, “Could this child also be autistic?”
REFERENCES used here are:
Pawletko, T. (2002). Autism & Visual Impairment; FOCAL Points, V1:2.
< My Thoughts > What I am offering here is a powerful story which may capture in a moment, what it is like to have this experience. (Autistic & Otherwise impaired.)
1,001 Tips for the Parents of Autistic Boys (2015) eBook Edition, by Ken Siri; Extended Review with < My Thoughts > by Sara Luker
Focused Excerpts from the book (8% indicates location in the Kindle version of the book, instead of page numbers.)
8% If you have Medicaid you get free evaluations. Check with your state websites to see if your family is eligible for Medicaid and CHIP which provide health coverage to nearly 60 million Americans, including children, pregnant women, parents, seniors and individuals with disabilities. There is also the Affordable Care Act of 2010, which expanded Medicaid eligibility in 2014.
< My Thoughts > “Don’t be afraid of the autism label, because it will help you get the services you need for your child.”
Don’t be afraid of the autism label. To get services you must have a diagnostic label and the autism (label) diagnosis gets you more of everything.
As a special education teacher, and before becoming a parent of a child with autism, I felt sorry for those parents who were in denial and could not see the ‘big’ picture. I wanted to take the parent aside and say, “Your child is so far away from hitting any developmental milestones, now or ever. Please…stop being in denial… accept that Autism label! Get started helping him!” But of course that would be quite unprofessional of me.
In the classroom, it just gives teachers a perimeter around which to confidently plan lessons and create goals for the child. But those labels throw fear into the hearts of parents. In many cases the child’s growth and progress is just delayed, but in other cases, important milestones may never be met, because someone refused the ‘autism’ label and the services guaranteed by that label. Just saying.
54% Having autism does not mean your son cannot have a fulfilling life; do not allow the language of victimhood into your vocabulary. Use empowering words that teach him that he is without limits.
88% Finally, remember you will need patience and optimism in this journey. Nobody can foretell the path your child will take and the spectrum of outcomes is broad. Take things step-by-step, stay present, and relish each day.
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Next: BLOG #5G Sensory Responses
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