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The Changing World of Autism. Barbara Stanton, PhD, LPCC, LMFT Prairie St. John’s.
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The Changing World of Autism Barbara Stanton, PhD, LPCC, LMFT Prairie St. John’s
“These children often show a surprising sensitivity to the personality of the teacher. However difficult they are even under optimal conditions, they can be guided and taught, but only by those who give them true understanding and genuine affection, people who show kindness towards them, and, yes, humor.” Hans Asperger, 1944
History and Statistics • Dr. Leo Kanner: 1943 • Dr. Hans Asperger: 1944 • Dr. Lorna Wing: 1981 • Dr. Tony Attwood: 1980s • Asperger’s added to DSM in 1994 • Limited quantitative studies to date, most is qualitative/anecdotal information • Look for studies post 2000 after assessment tools standardized • Over last ten years individuals identified with Autism Spectrum Disorders have gone from 1 in 5000 to 1 in 50 (2013) • Often misdiagnosed • 4:1 males to females http://www.cdc.gov/ncbddd/autism/index.html
Diagnostic Criteria DSM IV TR: Impairments in communication Social interactions Repetitive/stereotypic behaviors
DSM 5 Changes proposed by DSM-5 include defining autism spectrum disorders by two sets of core features — impaired social communication and social interactions, and restricted and repetitive behavior and interests. DSM-5 reorganizes the symptoms in these domains and includes those not previously included in DSM-IV TR, such as sensory interests and aversions.
Will those with PDD NOS be placed in the category of a Social Communication Disorder which will not allow for the same services as autism? The concern is that children with Asperger’s and PDD NOS may be missed. Current studies are not showing that to be true. The major problem in diagnosing is with clinicians who are unfamiliar with autism spectrum disorders.
Social Communication Disorder is a (SCD) is an impairment of pragmatics and is diagnosed based on difficulty in the social uses of verbal and nonverbal communication in naturalistic contexts, which affects the development of social relationships and discourse comprehension and cannot be explained by low abilities in the domains of word structure and grammar or general cognitive ability.
The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge. Stephen Hawking
Co-morbid Conditionsor Misdiagnoses • Obsessive Compulsive Disorder • Anxiety Disorders • Mood Disorders • Bipolar Disorder • Conduct Disorders/ODD • Depression • ADD/ADHD • Schizophrenia (may be characteristic of ASD)
Brain Differences • Neurological • Likely epigenetic • Influenced by environmental factors • Chromosomal differences • Brain structure • Neurochemical transmitters Multiple autisms
Autism is the result of alterations in how the brain processes information that alters how the mind sees the world. The neuropsychologic profile defines deficits considerably beyond the three major impairments—social reciprocity, communication, and repetitive and stereotyped behavior—that have been used to define ASD. Recent findings suggest a more brain-wide disturbance in information processing and its neuronal architecture. Dr. Nancy Minshew: Univ of Pittsburgh, Pediatric Neurologist
“For some of us with ASDs, the emotional- relatedness physical or biochemical circuitry is missing- no matter how hard we try, it’s a bridge that may never be built because some of the basic building materials are missing.” Dr. Temple Grandin
http://www.youtube.com/watch?v=aT0zCzCp6yYtemple grandin MRI
Elements of an Assessment:Necessary Domains • Developmental history • Autism diagnostic measurement (evidence based) • Parent interviews • Intellectual assessment • Language assessment • Adaptive behavior assessment • Physical examination
Neuropsychological assessment • Attention • Executive functioning • Academic functioning • Psychiatric assessment • The School context • Family and Community context • Evaluate the response to treatment There is no laboratory “test” to diagnosis autism.
Important Considerations • Use multiple sources • Use multidisciplinary teams • Have assessments done by individuals familiar with ASDs • Know the goal of the assessment • More children are being accurately diagnosed earlier; parents tend to notice differences before age 1 so listen to them • Rule out psychiatric and other co-morbidities and physical causes for symptoms
What does Evidence Based mean? Evidence based means that there is the integration of the best available research with clinical expertise in the context of patient characteristics, culture, and preferences. This is done in a manner that is compatible with the environmental and organizational context. Evidence is comprised of research findings derived from the systematic collection of data through observation and experiment and the formulation of questions and testing of hypotheses.
However… • “Evidence-based” should be viewed with a healthy skepticism primarily because there has been a gap between empirically-based treatment and the context in which services are delivered. It is believed that it could take 10 to 20 years before a treatment can be understood in terms of its effects within a practice setting • All too often when it comes to the application of evidence-based practices little attention paid to the unique characteristics of individuals and their families and whether or not the practice should be used.
Not all research is the same; science researchers and clinician-investigators are trained for different professional missions and responsibilities • Research evidence is only one part of evidence based practices • Autism “research” is filled with unproven claims preying on desperate families
Challenges They may appear: To not pay attention To not follow the rules To not understand you To not care what’s happening around them To be clueless To over react To be rude, manipulative, aggressive They are: Autistic
Spectrum within the Spectrum • The characteristics will vary in degree within each individual with Asperger’s Syndrome. For example, some are more gifted in the arts while some have their gifts in technology. Some will have aggressive meltdowns while others will withdraw passively. Some will be very physically uncoordinated while some will be skilled athletes.
If a child can’t read, we teach • If a child can’t tie their shoes, we teach • If a child can’t ride a bike, we teach • If a child can’t behave appropriately, we punish… Watch for “false attributions”.
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Interventions • Video modeling and social stories are the only evidence based interventions for children with AS or are high functioning. • What about ABA (applied behavior analysis)? • What are they learning? • Little evidence of long term success • New evidence about how children learn • Too many differences in type of intervention, methodology, outcomes
Teach from success; look for the teachable moments • Play detective and figure out the behavior • Develop Plan A; have a Plan B; and have an escape plan…teach and practice (Collaborative Problems Solving: Ross Green www.livesinthebalance.com
Resources Agency for Healthcare Research and Quality http://www.effectivehealthcare.ahrq.gov/ehc/products/106/656/CER26_Autism_Report_04-14-2011.pdf
Scary and dangerous… • Neurofeedback • Son-Rise (emphasis on eye contact) • Packing (wrap child tightly for hour in refrigerated wet sheets) • Cannabis (THC counteracts inhibitory mechanisms) • Chelation therapy (detox from heavy metals) • Cranioacral therapy (gentle pressure will improve flow and balance of cerebrospinal fluid) • Hyperbaric oxygen therapy (compensates for decreased blood flow by increasing oxygen) • Stem cell therapy (only in proposal stages) • The vaccination issue…
Ask yourself, “Is this oppositional behavior or the behavior of someone with autism?” What do you need to understand? It doesn’t negate the maladaptive activity but may be important in the intervention.
How do you pronounce wind? Or does? • Can a book be an umbrella? • What does it mean when someone says no? • Are you allowed to touch someone’s hair? • What do you do when the doorbell rings? • What is the best thing to do when someone raises their hand?
The meaning comes from the context. Context blindness is not a new theory. It is a comprehensive way to understand the difficulties that people with an autism spectrum disorder experience.
The wind blew over the chair. He needed to wind his watch to maintain the correct time. John does the packing for the hunting trip. John prefers shooting a buck over does. John does not have a hunting tag for does. Why would someone raise their hand? Ask a question. Hail a cab.
Context is the totality of elements within the observing persons and in the spatial and temporal surroundings. It is the totality of relevant elements within the environment and our memory. In a given situation a detail may be contextually relevant. • Context sensitivity is the ability to discover within the collection of elements contextually relevant information and to ignore unimportant things.
The idea of context and autism is not new. While the word wasn’t used, it was addressed by the early pioneers including Dr. Kanner. Psychologist Uta Firth furthered the studies with Lorna Wing and Michael Rutter at the University of London. Firth describes ‘central coherence’ as “a built in propensity to form coherence over as wide a range of stimuli as possible, and to generalize over as wide a range of contexts possible.”
In other words, people with an ASD do not see the forest for the trees. In fact, they sometimes do not see the trees at all but will see the bark, the veins in the leaves, the bug crawling up the trunk. It is not that people with an ASD see more details but they will notice details that others do not see. They will have difficulty knowing how those details fit into the context of the situation.
