Handout: Seasons of Struggle, Seasons of Growth
©Jared Stewart, M.Ed.
No claim is made to any of the images in
this document that don’t have me in them.
[email protected]
Phone: 801-226-2550
www.svacademy.org
Season 1: Tips for Early Childhood
 In early childhood, intervention is crucial! (priorities!)
 Family & community support is critical (for parents too!)
 20 hours a week of some kind of engaged treatment (ABA)
 As much interaction/contact/play as possible! (kids!)
 Don’t forget to address the BIG 5 (often overlooked due to
“diagnostic overshadowing”):
1. Diet/Nutrition Issues
2. Digestion/Gut Issues
3. Meltdowns/Misbehaviors
4. Toileting Issues
5. Sleep Issues
(University of London, 2016)
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Season 2: Tips for Elementary Years
Good Habits! (Thinking and Acting!)
Basic systems– safety, hygiene, self-care, mindfulness
Anti-bullying, problem-solving, and coping skills
Exercise and/or Martial Arts
Chores! Odd Jobs!
Teaching Games
Manners/Social Skills
Key = “Stretching” (ZPD)
“I think sometimes parents and teachers fail to stretch kids. My
mother had a very good sense of how to stretch me just slightly
outside my comfort zone.” ~Temple Grandin
In Every Season:
Strive for
!
Maximizing Sleep: (mostly from Brain Rules, by John Medina, 2008)
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Aim for 7-9 hours a night (but take what you can get!)
Take an early-afternoon Nap! 
o 26-45 minute nap after learning improves:
 productivity + 34%!
 memory + 500%!
o Do not nap if there’s less than 5 hours before sleep
Avoid caffeine 6 hours prior to sleep
Avoid screentime (tablet, TV, computer, etc) for at least TWO HOURS prior to sleep
Get up early to study/play/work, rather than staying up all night
Know your sleep cycle, and do your work when you are most alert
Review the things you most want to remember right before going to sleep
Exercise! (But not too close to bedtime.)
If all else fails, use Melatonin to help with sleep transitions or difficulty becoming
drowsy (talk to your doctor, start with a low dose, increase each night until it works)
“Sleep Hygiene”
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“If one were to sit down and design a
form of environmental stimulation
that would be toxic or damaging to
the ASD brain…that stimulation is
21st century technology.”
~Dr. Christopher Mulligan
“For many autistic youth, gaming
represents a drug-like solution to
multiple challenges…I’m not against
recreational gaming [that] doesn’t
disrupt usual routines, school, work
or relationships… [but] compulsive
gaming ALWAYS impacts other
areas of life.” ~Temple Grandin
Have a Sleep routine (system), follow it RELIGIOUSLY
Use your bed ONLY for sleep
Wear super-comfortable clothes
Use “white noise” to help minimize sensory issues
Make sure your sleep area is dark and cool
Season 3: Tips for Teen Years
 Right Medication(s) and/or Supplements (Stabilize!!!)
“If you start using a medication in a person with autism, you should
see an obvious improvement in behavior in a short period of time. If
you do not see an obvious improvement, they probably should not be
taking the stuff. It is that simple… [But] all the meds in the world can’t
stand up to ongoing bad habits and helplessness.” ~Temple Grandin
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Drama, Clubs, Scouts… Social Groups! (keep stretching)
Sex-Ed!!!! (if not before this… or risk “sexual abandonment”)
“Label” Awareness (Focus on Strengths!)
Mentors and Heroes (can be historical or fictional…)
Anxiety Coping Skills, Problem-Solving Skills, EF Skills
Social Skills Training (“unwritten curriculum”)
Academic Supports (homeschool/online school)
Consequences… (don’t punish symptoms)
Volunteering (job if you can get it!)
Video Games (take steps to avoid compulsive use of media!)
Season 4: Tips for High School Years
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Get a Job! (or at least volunteer)
Get a Planner! (“independent organizational aid”)
Avoid isolation and other dis-abling habits
Expose to the widest variety possible of positives
“The most important thing people did for me was to expose
me to new things… You have to keep trying things, because
you never know when you’ll hit on something that will keep
[them] motivated.” ~ Temple Grandin
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Channel special interests in career directions
Aim for Transition! (College or Trade if possible)
Create EXPECTATION of Transition
License? Dating? Mission? (Delays are OK!)
Higher level social-skills and life-skills training
Greater freedom and responsibility (use questions, not control)
Seasons 5 & 6: Tips for Transition and Adulthood
Selected Resources:
Keeping It Real: How to Get the Support You Need
for the Life You Want, Keeping It Real Teacher’s
Module, and Keeping It Real Parent’s Module
By K. Roberson, R. Blumberg, D.Baker.
*The Loving Push: How parents and professionals
can help spectrum kids become successful adults.
The Elizabeth M. Boggs Center on Developmental Disabilities
The Individuals with Disabilities Education Act (IDEA)
idea.ed.gov
rwjms.umdnj.edu/boggscenter/projects/keep_real_more.html
Training Modules for the Transition to Adult Living:
An Information and Resource Guide
CalSTAT: Technical Assistance & Training
www.calstat.org/transitionGuide.html
It’s My Choice by William T. Allen, Ph.D.
Minnesota Governor’s Council on Developmental Disabilities
www.mnddc.org/extra/publications/choice/Its_My_Choice.pdf
Life’s Journey Through Autism: A Guide for
Transition to Adulthood
Organization for Autism Research, Southwest Autism
Research and Resource Center and Danya International, Inc.
www.researchautism.org/resources/reading/documents/transiti
onguide.pdf
Raising Martians-From Crash-Landing To Leaving
Home: How To Help A Child With Asperger's
Syndrome Or High-Functioning Autism
by Joshua Muggleton, (2011)
Preparing for Life: The Complete Guide for
Transitioning to Adulthood for those with Autism
and Asperger's Syndrome by Jed Baker (2006)
by Temple Grandin and Debra Moore (2015)
Americans with Disabilities Act (after the IDEA “cliff”)
www.ada.gov
Autism Speaks (www.autismspeaks.org)
Table 1. Selected Characteristics of Individuals
Diagnosed with ASD observed in Adulthood
Characteristic
Living independently
College degree
Employed or studying
Psychiatric disorders
Mood disorders
Anxiety
Attention-deficit/Hyperactivity
Percentage
50%
25%
43%
53%
50%
43%
Dyslexia
14%
Eating disorder
5%
Catatonia
6%
(Hofvander et al., 2009)
Trajectory of Autism Symptoms Across the Lifespan
With regard to symptoms of autism there are 3 possible lifespan outcomes (e.g. Seltzer et al., 2004, Shattuck et al., 2007).
1. Most improve (i.e. abatement of symptoms, some to the point of “outgrowing” their autism!)
2. Some plateau (esp. associated with individuals who isolate and avoid)
3. Some lose skills (esp. associated with psychiatric disorders)
“Indeed, it is astonishing that as many as between 10 and 20% outgrow the diagnosis, as autism is
arguably among the most severe and pervasive of the developmental disorders.” (Seltzer et al., 2004)
Transition Planning Priorities!
 What future do you picture for them?
 What do you want them to be able to do?
Prepare for BOTH Cliffs!
1. The “22 Cliff”— Graduation from High
School and/or the end of IDEA
guaranteed government services
2. The “Care Cliff”— Parents or
guardians can no longer provide for the
individual’s needs/services
 Prioritize ADAPTIVE skills over ACADEMIC
skills as age increases
 Vocational, Social, and Navigational skills
 Prioritize multiple-environment skills
 Prioritize safety/survival skills
 Prioritize skills that REDUCE dependence
 Address ALL areas of Transition
Adapted from Wehman, 2012
Top 7 Areas of Transition:
http://www.autismspeaks.org/sites/default/files/documents/family-services/wehman.pdf
1. Employment/Education
2. Living and Participating in the Community
3. Getting Around (Transportation)
4. Money Management/Financial Literacy
5. Friendships/Social Skills
6. Sexuality/Self Esteem/Personal Identity
7. Fun! (what to do in leisure time)
The 3 “Terrible Questions”:
1. Will my child ever live on their own?
2. Will my child ever have a job?
3. Will my child ever be normal?
(What will happen to my child when I die?)
Dr. Peter Gerhardt’s Question:
“Is this outcome more the result
of his/her Autism diagnosis, or
more the result of never having
been taught a reasonable cohort
of actual living skills?”
“In conclusion, the trajectories of change in cognitive and
social functioning in Autism Spectrum Disorder in old age
remain unknown. It may be that declines will follow the
pattern observed in TD older adults or that certain functions
may be spared or continue to improve in ASD.
Future studies using prospective, longitudinal methods are
needed in order to identify the nature of age-related changes
in behaviour, cognition and neurobiology. Such studies will be
important for the planning of interventions and resources for
the growing elderly population with ASD, but may additionally
provide clues to the neuropathology and etiology of this
complex condition.” ~Happe & Charlton, 2011
Challenges In Older Adulthood:
A study of aged 50+ adults with ASD, reported 31% met criteria for psychiatric
diagnoses (Totsika et al., 2010). Most common issues generally noted:
 Anxiety Disorders,
 Depression,
 Obsessive Compulsive Disorder,
 Attention Deficit Hyperactivity Disorder,
 Oppositional Defiant Disorder,
 Tourette syndrome
[However, in contrast, studies in children and adults with ASD report 70-75% (e.g.
Ghaziuddin & Zafar, 2008; 16 p; Simonoff et al.,2008). This is consistent with the
overall finding that nearly all ASD symptoms IMPROVE with aging! 
(e.g. Kern et al., 2006; Esbensen et al., 2009)]
Nikola Tesla, ASD and
(in his old age) OCD
Season 7: Optimizing Outcomes for Aging
(adapted from Elizabeth A. Perkins, PhD, RNMH & Karen Berkman, PhD, MSW, 2011)
1. Health promotion/health prevention (helping them to age healthily and improve overall health)
2. Wellness screenings (e.g. cancer screenings, dental checkups, mammograms, yearly physicals)
3. Psychological well-being (advocating to ensure availability of optimal treatments/medications for those
with dual diagnosis like anxiety, depression, epilepsy, etc)
4. Polypharmacy (careful monitoring of medication with increasing age)
5. Lifelong learning (e.g. education, employment/retirement and socialization opportunities)
6. New activities (a range of opportunities for continuing personal development, hobbies, skill building)
7. Fiscal management (plan for financial security and how this will be achieved into the retirement years)
8. All of this as a part of effective Lifespan Planning!
Creating a LIFE PLAN: (email me if you’d like a template… I have several different examples)
The information in a life plan is used by people who subsequently care for the adult with autism when the
parent is no longer the primary caretaker. The plan should be reviewed annually as the individual with ASD
ages and the family situation changes, and at least every three years to ensure that legal documents are still up to
date. Life plans should include considerations for the following:
1. Legal planning documents such as wills, special needs trusts, arrangements for guardianship and
guidelines for establishing or maintaining state and federal benefits
2. Financial / legal planning that will safeguard SSI and Medicaid
benefits, trust funds, inheritance, etc
3. Financial planning to ensure that the “extras” in life that
families provide--cable TV, vacations, favorite books and CDs,
favorite clothing styles--are continued
4. Predictions of probable medical needs and desired interventions
5. Residential needs and desired living environments such as
alternative housing options, residential facilities, group homes,
and supported living options in the community
6. Details on the individual’s likes, dislikes, preferences and
unique personality features
7. Instructions for final arrangements and burial plans
Donald Triplett: Autism’s “Case 1”
8. Detailed choices they may wish to make beyond basic food,
now in his 80’s, successful & secure!
housing and medical needs
9. Specifics on how the individual may have control over his/her life choices. Assurances are detailed that
someone the family knows and trusts will be watching over and advocating for their loved one
10. The life plan may also provide a schedule or example of a typical day in the life of the individual.
The Five Stages of Effectively Dealing with a Label
As concluded from a 20-year study conducted by Higgins, Raskind, Goldberg, and Herman (2002)
Stage 1: Awareness of a Difference
All participants described a time when, although the problem had not yet
been pinpointed, they were aware of being different from others.
“I think something is wrong…” (or not making sense)
Stage 2: The Labeling Event
After being officially “labeled,” individuals needed to not
only identify which labels actually reflected their
difficulties, but also to settle on their own terms to
describe them.
“What you have is ____________, which is defined as…”
Stage 3: Understanding/Negotiating the Label
Following the labeling event, individuals (and their parents) struggled with
two main issues: (a) to understand exactly what having this label meant in
terms of strengths and challenges, and (b) to resolve confusion as to what
kind of help and accommodations would be needed.
“OK, so I have ___________; and that means that I need to do ___________”
Stage 4: Compartmentalization
Once the extent and nature of the disability was clear, the next step
successful individuals took was to place the disability in perspective
relative to their other attributes, that is, to minimize its importance. In
brief, the task of this stage is to minimize weaknesses and maximize
strengths—realizing that any label is only one small part of a person’s
identity.
“This is a part of me; but it is definitely NOT all of me…”
Stage 5: Transformation
The most successful individuals reached a final stage of acceptance of their
label in which they came to see the disability as a positive force in their
lives—one they were actually glad to have had to deal with.
“I am thankful that I have had to deal with _____________, because my life
is now better for it!” 