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Dena Gassner, LMSW
Director: Center for Understanding Coordinator: Transparency Project of the
ARC of Williamson County [email protected]
Who am I?
Advisory board member to ASA
Advisory board member to GRASP
Director/ founder of the Center for Understanding
Mom to a person with pervasive developmental disorder
UCEDD trained social worker
Teacher
Why you should know me…
Support group for moms, teachers and providers who support those who learn and live differently!
Why should you be here?
DSV-IV Diagnostic Errors DSM-V Missing Pieces? Gender Bias Invisibility Bias Issues specific to the
neurological differences of the condition deny or delay success in obtaining entitlements and /or supports
Co-occurring mental illness
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Who will show up at your door?
Presentation: Previously undiagnosed or presenting with a
newly diagnosed child History of misdiagnoses and maltreatment with
poor responses to medication and/or therapeutic intervention
With common prior misdiagnosis of ADD/ADHD Often with history of abuse or manipulation Erratic school performance Appearance suggestive of anxiety, depression,
PTSD and/or mania with or without co-occurring mental illness
Social isolation or social dysfunction cycling in and out of relationships
Some characteristics are observable
Differences you can look for! Facial differences
(avoidance or unusual use of eye contact; may look at you when they talk but look away to compose their own thoughts or visa versa
unusual (flat or exaggerated) affect
Appearance Sloppy or extremely flawless Out of date with fashion or age Eccentric accessories often related to
sensory instabilities (40 gallon hat)
Some characteristics are observable
Fine-motor issues Avoidance of handwriting tasks or
weak/harsh handshake
Large-motor Unusual gait and/or toe walking
(bouncy walk). Unusual posture from low muscle tone (slouchy or rigid)
Nearly always late for the appointment or a hour early Time management issues, EF,
mobility issues even with GPS
Significance of the condition Many individuals who are disenfranchised can’t identify
resources Those who are decompensated struggle to obtain
resources Organizational skills block initiation to make contacts Social/communication deficits block requests for services Language processing/theory of mind deficits result in limited expressions
of needs Limited cognitive capacities block sustaining efforts Cognitive deficits mean they’re often functionally unable to understand
processes to access services Follow through skills block appeals Application forms do not support the actual information requests IE there
is “hidden curriculum” (Myles)
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Unsuccessful camouflage Many individuals have been
“programmed” to hide their challenges, thus it may not be tangible to the social worker or provider OR THE PERSON!
The capacity to “hide” the challenge is mistakenly perceived as a strength instead of a desperate tactic that requires an unsustainable super human effort
If they manage unsupported work tasks, quality of life, interpersonal relationships, identification of supports, energy to seek a more supported job or ADLs suffer.
Something is always sacrificed.
Recognize manifestations of the Brain Fog: disenfranchisement
Misdiagnosis = med mismanagement
Bad meds = brain fog
= inability to identify resources = inability to find the cognitive or
emotional strength to “work the system”
= an inability to execute the EF tasks needed to use systems (files, mobility, phone contact,
= inability to identify resources = inability to seek out resource Add a good dose of low self-esteem
and worthlessness = depression and fear making
interacting with others within resource programs impossible
Recognize the cognitive limitations
Sleep deprivation in 64-85% of all persons with ASD
Sensory dysfunction Language
processing deficits Organizational
challenges Difficulty sustaining
effort
Mobility issues Crowded waiting
rooms Untrained personnel
placing unreasonable expectations on clients
No insurance support
The Mystery
What are the keys to individual success and wellness?
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New definition of SUCCESS Not NORMAL Traditional
learning Traditional 40
hour per week work
Traditional relationships
Diplomas
How do we Live Well with ASD?
The individual and/or family must understand and embrace the diagnosis.
Understand the diagnosis and it’s application to self like it’s a class assignment!
Why is this so hard What are my strengths What are my
challenges? Where and how can I
adapt?
The Connection Process©
How does the individual experience their unique expression of ASD?
How do others experience the ASD?
What can be done to bridge the barrier between?
How does disclosure level the playing field?
How does one use accommodation and modification to maximize productivity?
How do we learn to live well with our ASD?
Where is it logical for the road to take another direction?
How does all of this sync together to insure the maximize productivity and quality of life?
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Road to success...
For [some] people it may initially be difficult to integrate the diagnosis into their image of themselves, but without it, the person with AS is denied the correct treatment or services to which he or she may be entitled. ...the person may continue to have difficulties that he or she has no way of resolving.”
(Lovett, 2005) by Houk
Shame train… How did we get HERE?
DSM-IV Versus Reality DSM-IV Versus Reality …no clinically significant
general delay in language…
PRAGMATICS EXPRESSIVE RECEPTIVE FLUENCY MODULATION INFERENCE TOM
no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
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COGNITIVE CHALLENGES!
Executive Function Planning Multitasking Organizing Prioritizing Shifting attention Working memory Time Management Need for
differentiated self-mgmt systems
Theory of Mind Transition tolerance
and the need for predictability
Mobility Money Management Social Deficits Anxiety/ transition The “gist”
Newest info from Dr. King
Symptoms cause clinically significant impairment in social, occupational, or other important areas of functioning.
Specify if: With or without loss of established skills Age of first concern With or without accompanying intellectual impairment With or without accompanying structural language impairment Associated with a known medical/genetic or environmental/
acquired condition Associated with another neurodevelopmental, mental, or behavioral
disorder
What’s wrong? Severities Page GONE! Executive Function Theory of Mind Vulnerabilities due to social
impairment- Abuse Employment/learning/
relational barrier of sensory dysregulation
Narrow, logical approach to problem solving; frustration when this doesn’t work as a strategy for situations calling for interaction
Issues with abstract thinking and generalization
All these difficulties can lead to co-occurring mental and physical health issues
High incidence of co-occurring learning differences and deficits in working memory lead to low scores; large discrepancies in left/right brain thinking
Perfectionism with tendencies for rumination and obsession
Comments to DSM-V
http://www.dsm5.org
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Shame Train When does
shaming begin? Where is it
reinforced? How does it
escalate? What are the
consequences?
Shame Train Limited validation No adaptations Whispers Autism as something
separate from self Unable to name it Unable to own it Unable to integrate self Unable to ask for
support
“The truth is that we often deny to adults with autism the kind of empathy and support we make readily available to children with the condition—or, for that matter, to people with white canes at crosswalks. We underestimate their capabilities, reveal our discomfort in their company, and display impatience when they inconvenience us.” (Donvan and Zucker; Atlantic Magazine October 2010)
INVISIBLILITY BIAS Step One: What is ASD?
Understand Autism Spectrum Disorder: The Condition
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What do we do?
A diagnosis from a qualified professional is critical (gender experience counts). BUT a diagnosis alone, is not enough!
Functional Capacities School based responses (disabled
enough but not too impacted) ACT/Enrollment eligibility Disability services SSI/SSDI
Mobility Communication Self-care Self-direction Interpersonal skills Work tolerance Work skills
Evaluation Conclusion Five categories
Letting go of compensation
Work skills are in tact now or can easily be easily mastered
Work skills which can be done with reasonable supports
What work goals are not legitimately achievable?
Personal management needs
Step Two: How do I experience ASD?
Understand the individual’s unique “expression” of ASD via a formal diagnosis (Attwood)
Helps to identify hidden challenges like the cognitive dichotomies and possible underlying factors.
Solid proof
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Step Three: How do I LIVE?
Understand how the individual experiences their “expression” of ASD in real life, in real time
“…Co-occurring learning disability in mathematics” =
“stop writing checks you fool!”
What Every Woman Deals With…
Executive Function Appearance Time Management Multi-tasking Housekeeping Food Planning/Prep/
Shopping Healthcare Budget/Financial Mgmt Hygiene Auto Care Crisis Management Self-awareness/care and
Wellness
It should be illegal!
Housekeeping Thanksgiving Christmas And PLEASE…
remember your own darn birthday!
It’s ABOUT TIME!
Step Four: How am I Perceived?
Understand how others “see” your condition
PERCEPTION “She looks angry all
the time”
TRUTH Fluorescent Lights
cause me pain and suffering
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Step Five: What can I Fix?
Identify challenges and difficulties that require accommodation
Four categories of information: Skills are in tact now or
can easily be easily mastered
Skills which can be done with reasonable supports and/or universal design and assistive technology
What goals are no longer achievable?
What personal management needs do I have?
Step Seven A: Maximize your Talent
After identifying what the individual is best suited to do, find a way to spend the majority of time doing that; what their brains are wired to do.
Skills one can do without assistance
Strength based: Public Speaking
No anxiety Capacity to speak “off
the cuff” Focus on special area of
interest Allows me to “pretend to
be normal” for short amounts of time
Exposure to ongoing social exchanges are limited
Step Seven B: Bridging the Gap/ Supports
Identify where reasonable supports can help reduce demands so that the individual is performing at his/her maximum productivity with reduced stress
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Step Seven C: Disclosure
Through the use of disclosure, we teach them to solicit what they need
• Complete • Need to Know • Partial
Disclosure
“Self-advocacy becomes necessary when your condition significantly impacts a situation or relationship, and all parties need a better mutual understanding. And with self-advocacy comes disclosure; after all, you need to tell others why you’re advocating.” (Shore and Rastelli, Understanding Autism for Dummies, 2006; pg 275)
Step Eight: Accommodations
With disclosure as the foundation, what structures can you build to enhance success?
Calculations Time management Regrouping time Written directions Tell me, show me,
watch me formula for training
Training for colleagues Changing
responsibilities*
Step Nine: Relax
When needs are met, the individual can leave the workplace with enough neurological energy to enjoy a higher quality of life all around
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Step Nine: Relax
As the individual with ASD is adequately supported and understood at work or school, he/she can maximize productivity
Step Ten: Wellness
When expectations are consistent with ability, we can reduce the likelihood of co-occurring mental health challenges
Assessment Acceptance Choosing the least
resistant path rather than settling for any one
Maintaining success by using accommodations
Achieve wellness
Ongoing supports...
Hire a “wife”! Cleaning Home care
management Eat out OFTEN Personal bill payment Income tax record
keeping
Systems Advocacy is Needed! WE MUST CREATE meaningful, adequate, appropriate programs to teach people with invisible differences where their “curb cuts” are and how to use them effectively
Programs need to include remedial, academic, social competency, and instruction on skills and structure for life needs
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When will the shaming end?
It feels raw to acknowledge that which we work so hard to hide, but only by turning ourselves inside out will they start to understand. We are damned if we do and damned if we don't. The more 'successful' we appear, the less support we can obtain even if we are desperate for it. Someday people will learn to value our strengths over what we hide (or cannot). And when that day comes, and we don't have to hide anymore, we can spend that energy achieving. Gassner [email protected]
615-200-2091
