A parent's "cliff notes" guide to Autism Spectrum especially in children. It discusses definitions, causes, therapies and their efficacy

1. Autism in a Nutshell
A guide for the average parent / layperson
By Frank Kelly
kellyfj@gmail.com
@kellyfj1

2. Intended Audience
• A quick guide aimed at Parents and lay people
who
• don‘t have time to read lots of Books
• money to hire lots of experts or
• expertise to read Neuroscience papers

3. Who am I?
• I am not an expert . . .
• . . . .but I have some ―experience‖
• I grew up with Autism in my family
• I have a son on the ―Autism Spectrum‖
• I have a Ph.D. in Computational Neuroscience from 10
years ago
• so consider me to have an ―informed amateur‘s opinion‖
• This is NOT professional / expert or medical advice.
Always consult a Medical Professional: Psychologist /
Neuropsychologist

4. Definitions

5. What is Autism?
• ―Autism is a disorder of neural development
characterized by
• impaired social interaction
• Impaired verbal and non-verbal communication, and by
• restricted, repetitive or stereotyped behavior.‖
• And more . . . .
• Boys affected more frequently than girls 4 : 1
• Autism is a label that covers a LARGE range of
behavioral and learning challenges . . . .
• That‘s why you hear the term . . . .

6. ―Autism Spectrum‖
• The autism spectrum or autistic spectrum
describes a range of conditions classified as
pervasive developmental disorders . . . include
• Autism
• Asperger syndrome
• pervasive developmental disorder not otherwise
specified (PDD-NOS),
• childhood disintegrative disorder
• Rett syndrome

7. Examples
• There is a HUGE range within the Spectrum
• Some kids have obvious challenges
• ―Low Functioning Autism‖
• Some kids challenges are less obvious
• ―High Functioning Autism‖

8. Autism also comes with . . .
• Sensory Sensitivities (Visual, Auditory, Tactile,
Proprioceptive, Taste etc.)
• ADHD
• Bipolar disorder
• Stomach / Bowel (GI) problems
• Motor Control issues
• Anxiety & Depression
• Epilepsy
• Sleep problems

9. Asperger‘s Syndrome
• Autistic kids but
• without significant language delays
• Have average to above-average cognitive skills
• Why was it rolled under ASD in DSM-V?
• ―aim was not to expand the number of people
diagnosed with mental illness but to ensure those
affected were more accurately diagnosed so they
could get the most appropriate treatment‖
• http://www.guardian.co.uk/society/2012/dec/02/asper
gers-syndrome-dropped-psychiatric-dsm

10. Occurrence

11. History
Some people with potential High Functioning Autism / Asperger‘s.
Not a formal diagnosis . . . . Just speculation based on historical
accounts
• Isaac Newton
• Nikola Tesla
• Albert Einstein
• James Joyce
• Lewis Carroll
NOTE: Most kids with HFA will NOT become famous theoretical
physicists / authors. Compare to employment rate later . . . .

13. But wait there‘s more
• 2010: 1 in 88
• 2013: 1 in 50

14. Causes

15. Overview
• ―53% percent of the increase in autism prevalence
over time may be explained by changes in
diagnosis (26%), greater awareness (16%), and
an increase in parental age (11%). ―
• ―Environmental factors, and their interactions with
genetic susceptibilities, are likely contributors to
increase in prevalence and are the subject of
numerous research projects‖
Source: http://blog.autismspeaks.org/2010/10/22/got-questions-answers-to-your-
questions-from-the-autism-speaks%E2%80%99-science-staff-2/

16. Hereditary Factors
• There is lots of evidence from studies of Twins (identical and
fraternal), Siblings and Parents suggest a strong genetic
linkage
• ―Experts estimate that 400 to 1,000 individual genes may play
a role in the complex neurological issues involved in autism.‖
• ―The largest-ever study of twins with ASD—192 pairs—
reported last year that when one identical twin has autism,
there is only a 70% chance that the other twin will, despite their
identical genetic makeup.‖
• ―Among fraternal twins, the likelihood that a second twin will
have autism is 35%—nearly twice the risk other siblings face,
the study found. ‗That suggests there was something about
their shared prenatal environment that really increases the
risk,‘
• It‘s not JUST genetics . . . .

17. Environmental Impact
• Not just on child but on PARENT!
• Nothing definitive – lots of potentials (some
controversial)
• Parental age (mother & father)
• Parental exposure to exhaust / combustion products
and disinfectants (esp. mother)
• Pitocin during Childbirth
• BPA
• And yes even Thimerosal (Vaccines)

18. Improved Diagnostics
• Less of a factor for Low Functioning Autism
• No simple ―blood test‖ for autism – diagnosis is based
on observed behavior
• Some of these kids were labelled as
• ―Problem Children‖
• ―Troubled‖
• ―Discipline Problem‖
• ―Lazy‖
• ―Overly Sensitive‖
• ―Retarded‖
• A recent example

19. So many causes . . .
• The problem is that Autism is a label that covers a
LARGE range of abilities
• Although the symptoms are the same (but varying
in severity) the underlying causes are probably
different – some solely inherited, some solely
environmental, some a mix
• So there will likely be targeted drug and other
therapies . . . .

20. Treatment

21. Brain Development

22. Brain Development
• Take-away – the brain does 90% of its
development before Kindergarten (need
reference)
• Your brain is still learning and can still adapt . . .
• Even adolescents and teens can benefit more
than adults
• The best chances for intervention are early – the
earlier the better

23. Autism in adulthood
• ―More than 50% of youth who had left high school in
the past 2 years had no participation in employment or
education.‖ [1]
• ―Nearly a quarter of the children with autism in this
study met lifetime diagnostic criteria for . . . major
depression.‖
• By 9 years of age!
• ―Reported rates of at least one anxiety disorders in
individuals with autism have varied from 17% to 84%‖
• LESSON: The impact of missed intervention is high

24. Behavioral Therapies
• ABA = Applied Behavioral Analysis
• Collect data on behavioral responses
• Determine if progress is being made
• If not reevaluate & try something new
• Focus is on positive reinforcement - No response to
negative behavior
• RDI = Relationship Development Intervention
• Breaks down experiences into smaller chunks
• Teaches ―intuitive‖ things explicitly
• Lets the kids practice forming and maintaining
relationships in different contexts.

25. Behavioral Therapies (cont.)
• DIR/Floortime
• ―therapists and parents engage children through the
activities each child enjoys. They enter the child's
games . . . Therapists teach parents how to direct
their children into increasingly complex interactions.‖
• ESDM = Early Start Denver Model
• My description ―A cross between ABA and
RDI/Floortime‖
• Others . . . .

26. Do these therapies work?

27. Therapy Results
• ABA
• ―behavioral interventions are effective for improving
language, cognitive abilities, adaptive behavior, and
social skills, and reducing anxiety and aggression‖[1]
• ―6 of 21 . . children [who received treatment] were
fully included in regular education without
assistance at year 3, and 11 others were included
with support (for 17 out of 21 placed in regular
education), compared to only 1 of 21 comparison
children in regular education‖[2]

28. Therapy Results (cont.)
• RDI
• The only published results I could find were from RDI
practitioners (potential conflict of interest)
• However my own personal experiences for RDI are
wonderful
• I am currently using a mix of ABA and RDI for my
son

29. Therapy Results (cont)
• ESDM
• ―The ESDM group exhibited greater improvements in
autism symptoms, IQ, language, and adaptive and
social behaviors than the community intervention
group.‖[1]
• ―Compared with children who received community
intervention, children who received ESDM showed
significant improvements in IQ, adaptive behavior,
and autism diagnosis‖[2]

30. Optimal Outcomes
for HFA kids
― . . . .‘optimal outcome‘ requires losing all symptoms of ASD in addition to the
diagnosis‖ [1]
HOW!?!?!
―The children in the current study were predominantly from the northeast US,
and therefore tended to get behavioral interventions . . . . ‖[1]
―It was the clinical impression of our team that the [Optimal Outcome] parents
were generally highly involved in the children’s treatment programs and in
their social lives.‖ [1]
―Parents who advocate vigorously for the best interventions and who carry over
treatments into other hours of the day do not guarantee the kind of [Optimal
Outcome] we describe here, but may maximize the chance of one.‖

31. Key Lesson
• Early and Intense Behavioral Treatment is
CRITICAL
• Some behavioral therapies may work for you,
some may not
• Please don‘t take the ―Wait and see‖ approach –
you are taking a lot of risk and the chances of
improvement get lower as the child grows older

32. Medication
• There is no medication to treat autism
• There are medications to treat symptoms e.g.
• Anxiety / Depression / Bipolar Disorder
• Aggression
• ADHD
• But if you don‘t understand the mechanism . . . . How
can you recommend a drug?
• Some Promising possibilities
• For Social Deficits - Intranasal Oxytocin

33. Diet
• The link between GI issues and ASD is very
interesting
• ―Research is showing that a common cause of autistic
children acting out is simply because they're
constipated -- which, from there, can mean they stop
sleeping and eating well.‖ [2]
• Some early results suggest that a Ketogenic diet –
High Fat / Low Carb (known to be beneficial to kids
with epilepsy) may be of help [1]
• Gluten-Free/Casein-Free diets . . . Being studied.
• Again this is NOT advice . . .

34. Where do I get help?
• Start with your Pediatrician (but keep your expectations in check). If
they don‘t refer you . . . Find a new Pediatrcian.
• Psychologist
• A psychologist evaluates, diagnoses, treats, and studies behavior
and mental processes
• Psychiatrist
• A psychiatrist is a physician (M.D.) who specializes in psychiatry.
• Neurologist
• A neurologist is a physician who specializes in neurology, and is
trained to investigate, or diagnose and treat neurological disorders.
• Neuropsychologist
• Neuropsychology is often considered to be a mixture of neurology
and psychology

35. Health Care Coverage
• Some people are surprised to learn that
―Educational‖ therapies like ABA are not covered
by the mental health parity act
• Many states mandate ABA coverage but that
covers HMOs
• But many companies work across states and are
covered by Federal mandates (―ERISA‖) which do
NOT mandate ABA (―self-funded‖)
• Cognitive Behavioral Therapy is covered
• Forget about RDI coverage **

36. Key Take-Aways
• ―The Spectrum‖ covers a big range
• Early and Intensive Behavioral Intervention is key
• Many potential causes . . . . .
• Many hopes for treatment in addition to EIBI
• So many Doctors, Educators, normal people are
just beginning to learn about Autism . . . You as
the parent are your child‘s best advocate.

37. Questions?