The 18th Annual National
Autism Conference
State College,
Pennsylvania
Report
By, Jaclyn Hunt MA, CAS
Introduction
The National
Autism Conference is held annually at the Penn Stater Conference Center
Hotel. This year it ran from August 4 -
7, 2014 and was comprised of keynotes, presentations, and workshops designed to
share the latest knowledge and research on Autism Spectrum Disorders. On average, 1500 - 1800 people attend this
particular event. The conference is
designed for professionals looking to gain credit to maintain their
certifications as well as provide parents and people with autism an opportunity
to learn more about themselves and their families. Additionally, there is a Children's Institute
where parents can bring their children while they attend the conference. This year, 96 children participated. Near the end of the week the children performed
a play for the conference attendees. In
fact, the hotel is autism friendly and creates a very safe and accepting
environment for families on the autism spectrum. This type of environment is very welcoming to
families dealing with autism because it actually allows them the chance to feel
open and free in an atmosphere where they would typically have to endure
stares, questions, and complaints. The
acceptance found at the National Autism Conference is the type we seek to
create everywhere as autism acceptance and understanding grows. This report is for those who cannot attend
this year's conference, those who are thinking about attending a conference in
the future, or for those who are simply curious as to what goes on in the
conference environment.
Monday August 4, 2014
The first three
sessions of the morning included the Conference Welcome, Opening Keynote, and
Autism Research Updates for the year 2014.
The opening remarks by Pat Hozella, Director of the Bureau of Special
Education in Pennsylvania emphasized the question of how we are going to ensure
students get outcomes from their treatment utilizing evidence-based
practices. The need for effective
intervention is significant seeing that 27,000 students in PA are eligible for
IEP under the definition of Autism in 2013-2014 reports. Also, the number of students transitioning
from school to post-secondary and employment opportunities will increase. This conference looked to seek input from the
attendees on how to best handle this growing issue. The welcome concluded with a performance by
the Temple Avenue Jazz Band where one unidentified member received intensive
early behavioral interventions and is now in college and part of this very
talented group of musicians.
Following the
welcome, Dr. John Bailey presented the Opening Keynote. Notably, he has been in
the field of behavioral analysis for almost 45 years. He gave an account of his
being an expert witness on a federal case in Miami Florida Fifth Circuit Court
K.G. v. Dudek. His account of the case
was very interesting. He mentioned that
there is a directory that insurance companies use to determine if an
intervention or treatment is of sound scientific validity. The
Hayes Directory actually charges a fee to review journals and insurance
companies pay for these directories.
This particular directory made Applied Behavioral Analysis Therapy seem
experimental as opposed to a proven method of intervention for children with
autism. Dr. Bailey showed how the Journal of Applied Behavioral Analysis is a
peer-reviewed journal with very strict guidelines. The outcome of the trial was of course that
Medicaid must cover ABA treatments for Children with Autism due to the
overwhelming evidence that it is the best scientifically proven method of
intervention at the time.
To end the
morning, Alice Kau, Ph.D, gave the final presentation. She comes every year to the conference to
update everyone on the latest in Autism Research. It was noted that 30% of people with Autism
Spectrum Disorder are minimally verbal and that fully nonverbal children are
rare. As is widely known, 1 in 42 boys
and 1 in 189 girls are identified with ASD, and the question has been posed as
to why there is such a large difference.
The final question posed by the presenter was the disparities and
diagnosis in children of African descent and that these disparities need to be
evaluated further. Interestingly, the
Center for Disease Control has a new Community Report on Autism published for
2014 and can be found at the CDC website.
It shows that 1 in 68 children are identified with ASD with great
variability across sites. The average
age of diagnosis is age 4 for Autism Disorder and Pervasive Developmental
Disorder while the average age of diagnosis for Asperger’s Disorder is age
6. Additionally, the Autism Cares Act
2014 has been reauthorized for another 5 years pending the President's approval
(as of the writing of this article President Obama has signed the
authorization). Obviously, much has
changed in the past year in the field of Autism and the remainder of the
conference will outline just how much it has changed and where that change is
leading us.
Following the morning
introductions and lunch, there were a number of breakout sessions that focused
on very specific topics. I chose to
attend the session with Dr. Ami Klin, “Bringing Science to the Community: A
new system of healthcare delivery for infants and toddlers with autism spectrum
disorders.” Dr. Klin brought
very exciting and new information to the conference in the direction of where
Autism is heading. At his Marcus Autism
Center in Atlanta, GA they serve 6000 children.
The earliest treatment so far is in infants and toddlers at 12 months of
age, well before the average age of 4 years old for a diagnosis. Treatment is beginning at 12 months, and
possibly even as soon as 9 months in the near future. Most recently we can reliably diagnose Autism
by 24 months. The malleability of the
brain in the first years of life is crucial to the treatment. According to Dr.
Klin, autism is a complex condition where the expression of genes are moderated
by the experiences we have. Autism is
creating itself every single day, unless we intervene. In the future we would like to see people
with autism as independent, able to go to college, working, and having
successful interpersonal relationships.
Currently, the best scenario is that they are not independent and
require a medium level of supports.
Typically, most people with Autism are disabled and require a high level
of supports. There is a small window of
opportunity to change Autism at 1-2 years of age. The costliest part of autism is services for
adult care.
Additionally,
Dr. Klin spoke of a 15-month old girl, the youngest yet diagnosed with Autism
and mostly because her sibling also had Autism.
In this 15-month old girl there was no significant difference between recognizing
biological or non-biological motion. Typical
children focus on biological motion.
However, if you add sound or “audiovisual synchrony”
to that motion you get the attention of the autistic viewer. Autistic children look at mouths because
there is the greatest amount of audiovisual synchrony there, whereas typically
developing children solely look at the eyes until language develops. The study
showed that audiovisual synchrony means nothing to neurotypical children. Some statistics to note, 1 in 5 siblings with
another sibling diagnosed with autism will have autism themselves, another 1 in
5 have just a dash of autism symptoms, and 3 in 5 will not have autism at
all. Things that disrupt socialization
contribute to Autism, not necessarily the genes.
Currently, primary
care providers make the most diagnoses.
Screening devices in primary care offices are already undergoing FDA
approval as developed by Dr. Klin's team.
This could mean much earlier diagnosis and opportunity for intervention
at highly critical times in the child's life.
There is a need to identify children before 36 months, preferably before
24 months. Essentially, Autism disrupts
the platform for brain development.
Typically developing children are socially trained on a constant
basis. We want to achieve the same for
children with autism, not simply 25 hours per week of intensive training, but
the same intensive training that their peers are entitled to simply by living
life. The ultimate goal that Dr. Klin
expresses is to make autism an issue of diversity, not disability.
Tuesday August 5, 2014
The second day
of the National Autism Conference was comprised of breakout sessions. Each
session was 3 hours long with one morning and one afternoon session. The morning session I chose was “Equipping
Youth with Disabilities for the World of Work: Engaging Youth, Schools, and
Communities to improve transition outcomes,” since my business is working with
this group of people and it is one of the very common issues I deal with as a
Life Coach. Erik Carter, Ph. D.
Associate Professor of Special Education at Vanderbilt University began by
explaining how we need to get our children on the spectrum connected to real
life experiences after high school. In
Tennessee, and similarly in most of the country, there is a 90% unemployment
rate for people with autism. Having a
disability is not a predictor of what people desire out of life, but it is a
predictor of if that desire is eventually met or not. Since connections are made by strengths and
contributions, not by limitations, it is important to take a strengths-based
perspective to help people with disabilities flourish. Transition is a results-oriented process to
facilitate the child's movement from school to post school activities.
In order for
those on the autism spectrum to succeed after high school, we need to create
opportunities for meaningful work. 40% of autism graduates in TN never work 1
day of their life 4 years out of high school.
Surprisingly, the expectations of parents are the biggest predictor of a
child's success after high school.
Similarly, opportunities for community living need to be created. Only 13% of high school graduates achieve
residential independence as measured up to 4 years after high school. Additionally, geography makes a difference in
whether a person with autism will succeed. In terms of inclusion, it has nothing
to do with the child, it is predicted by what district that child is in. If you
put the child in the right environment with the right supports, regardless of
their condition, there will be results.
Notably, there
are 402,000 paraprofessionals in the United States. They outnumber special
education teachers. We want to be sure
that students do not rely too much on this kind of support because it is simply
not available in the adult world. Dr.
Carter suggests a peer-mediated support and intervention strategy based on the
child's individual needs and that takes into account that particular child's
strengths, preferences, and interests.
We want to engage the students in their own educational planning and their
adult futures. Studies have found that the
best predictors of a child finding employment after high school is parental
expectations that he or she will get a job, work experience during high school,
and having moderate/high household responsibilities. Currently, 15% of those with autism have after
school or summer jobs. This is an
extremely powerful predictor of future jobs, and such a small percentage of
these young adults are working. With
community partners and natural supports, transitions are still hard work that
require collaboration but are very much doable and necessary for our children
with autism to become participating and contributing members of society.
The second
breakout session of the day that I decided to attend was with Dennis
Debbaudt. His presentation was entitled “People
with ASD: Contact with Police and Public Safety Professionals.” He has a son with autism. A comment during our discussion mentioned
that; there are no prisons for those with autism, there are only prisons. Autism training is important for law
enforcement for just this reason. Dennis
spends much of his time training law enforcement on this very issue due to his
own personal experiences raising his son.
A person with autism would be at extreme risk in the general prison
populations. In addition to training law
enforcement, there is also much to be done on the other end where families must
take precautions and continually teach appropriate behaviors to their children
and adults with autism. We actively
discussed wandering and ways to help law enforcement identify those with
autism. Furthermore, people with autism
are the perfect victims, and can also be seen as criminals even though the
intent to do harm is not there.
Fortunately, this session was recorded so that anyone can look in on our
discussion and the excellent presentation given by Dennis Debbaudt. I will include the link to this session and
others that may be of interest to the readers at the end of this article.
Wednesday August 6, 2014
The third day of
the NAC 18 also comprised of breakout sessions.
Peter F. Gerhardt, Ed.D, presented the morning session that I attended. He
is part of Peter Gerhardt Associates, LLC.
He is also part of the Organization for Autism Research and part of the Behavior
Analysis Center for Autism. The session
was entitled: “Transition, Adaptive Behavior, Employment, and Community
Living for Individuals on the Autism Spectrum.”
As you may already realize, this conference brings in the experts from
all over the world to speak on the latest research and findings. Peter Gerhardt gave a very thorough overview
of what needs to be done in real life circumstances with our children on the
autism spectrum. He stresses that
everyone is capable of living and working in the environment with proper
supports. No one has to earn the right
to be in the community. Unfortunately, the quality of life for people with ASD
is rarely discussed and needs to gain more attention. For people with ASD the quality of life has
everything to do with the supports that you have in your adult life and has little
to do with the severity of the person's autism symptoms.
Next, Peter went
on to discuss that life in general is full of risks. As a society we have become so overprotective
of our autistic children that we accept zero risk. This is risky in and of itself because it
ends up harming them. There needs to be
a balance where we can find an acceptable level of risk. He uses the example of a neurotypical girl
getting lost driving someplace new for an hour.
She was eventually found and made it home safe. He then told the same story about a girl on
the autism spectrum who was also lost for about an hour and was then told that
maybe it would be better if she didn't drive that far anymore. Her world suddenly becomes smaller because
she made a mistake. The real risk lies
in not allowing mistakes and having the opportunity to learn from those
mistakes. Basically, we hold our
children on the spectrum to much higher standards that we hold ourselves. This is detrimental to their quality of life
and well-being.
Another topic
Peter brought up was about what we are teaching our children in therapy. We teach a child to memorize the colors in
the crayon box but he cannot clearly tell you his address or telephone number.
Teaching the wrong skills is no better than teaching the right skill
poorly. He then goes on to outline
better goals for the conclusion of high school.
First, leave school employed at least 20 hours per week minimum. Second,
a social support network should be in place centered around where the graduate
lives, works, and recreates. Third, the
graduate should be able to follow directions and initiate actions on his/her
own. Lastly, function under the stimulus control of the natural environment and
have the ability to manage his/her own behavior. These goals are so much more specific and
useful to an adult that we want to be self-sufficient and a contributing member
of society. Anything less is
unacceptable.
It is important
to note the emphasis on how 40% of people with ASD become victims of sexual
abuse, a crime of violence. There is
very low knowledge and experience in those with ASD as compared to typical
peers. They are more likely to engage in
inappropriate courting and more likely to stalk. Likewise, there is a growing number of those
on the spectrum who are being incarcerated for making social mistakes. Self-protection must be taught. Many parents assume that their children are
asexual or if they do not talk about these issues they will simply not
exist. This is a critical error that again
falls under the category of overprotecting and therefore putting children at
significant risk.
Lastly, the
employment aspect of the presentation discussed how employment is much more
than simply the job task. For the person
on the spectrum the job task is the easiest part. There is so much more going on that needs to
be addressed in order to make our children work ready. Families need to be realistic about what
their children can do but also set very high expectations. He closes the discussion with this:
"Keeping your kid isolated is the riskiest thing you can do. Making them involved in the community is the
safest." So, if you take away that
one message you are well on your way to protecting your child but also giving
them the quality of life they deserve.
It was an excellent presentation by Peter Gerhardt.
Later that afternoon
I attended “Puberty, Dating and healthy sexuality for individuals with
ASD and Asperger's Syndrome” by Isabelle Hénault M.A. Ph.D.
from Montreal Canada in collaboration with Dr. Tony Atwood, Ph.D. from
Brisbane, Australia. Her Montreal
Clinic, Clinique Autism and Asperger of Montreal seek to help those on the
spectrum with relationships and sexuality.
Her presentation was impeccable and the message was very important for
parents and everyone on the autism spectrum to hear. Sexuality is a normal part of development and
life. There is a complexity to it that
makes it difficult for those on the spectrum, but that does not take away from
their desire or need for it. This presentation
went very well in conjunction with Peter Gerdhardt's presentation earlier that
day. She states that overprotection
leads to the potential for abuse. People
on the spectrum are free of social rules.
They have difficulties with theory of mind as well as detecting,
reading, and expressing emotions. Their
socio-sexual development includes things such as self-stimulation, exploring
sexuality, lack of experience and finding guidance. If you as the parent do not guide them, they
will find guidance elsewhere. Isabelle
stresses that every single one of her clients finds information about sexuality
from pornography. They sometimes have no
other option. This of course is
dangerous because pornography does not paint an accurate portrayal of sex and
relationships. Frustrations and
inappropriate behaviors can grow out of this when children are not provided
with materials and information to satisfy their need to understand
themselves. The theme again is that if a
parent overprotects by pretending their child is not a sexual being, they are putting
that child at extreme risk. Things like
context and consent must be taught and experienced. Every child needs information or basic
knowledge, experiences, and social support.
Similarly, safety
is a huge issue when dealing with sexuality.
The recognition of abusive or unfriendly relationships is a must. Qualities of a healthy relationship must also
be stressed such as sharing, communication, pleasure, sharing of interests,
respect and much more. Shockingly, 40%
of those with ASD are abused and become abusers themselves. Related to this is the issue of child
pornography. Adolescents innocently
searching the Internet for information on sexuality always come across
pornographic sites. These sites very
easily lead to more dangerous and illegal sites that those on the spectrum may
not understand as illegal. They can very
quickly get in trouble with the law and have their lives ruined. The law does not recognize the difference
between a confused person with autism who has accidentally downloaded 2000
child pornography pictures to a sexual predator who has a minimum of 20,000
child pornography pictures. Internet
safety comes into play here as well as social safety out in the environment.
Isabelle also
goes on to discuss intimacy and romantic relationships between those with
autism and those with autism and a neurotypical partner. Intimacy often becomes a problem in
neurotypical/autism relationships. In
autism/autism relationships things can go very smoothly or there can be a lot
of conflict. Lastly, affection is
something that must be taught to those with autism. It is not something that comes naturally to
most on the spectrum.
Thursday August 7, 2014
The final day of
the National Autism Conference was full of energy. Many presentations took place and the morning
began with breakout sessions. I chose to
attend a very popular session on Anxiety: “Fear Lives in the Hearts of Men and
Women and Danger is a Ubiquitous Human Experience” with Dr. Patrick Friman. He begins by describing how anxiety is a
natural state for our species. We need
anxiety to survive. At the same time it
is very hard to define anxiety. It's
literal meaning is "to choke".
His definition of anxiety is fear based avoidance of objects, activities
or events that are not inherently harmful, and for an anxiety disorder you
would add impairment. He then went on to
describe how a controlling person is very often an anxious person. It is very difficult to treat controlling
behavior, but anxiety is very treatable.
He spoke of Boys Town in Nebraska, a residential village with 500
delinquent kids with surrogate parents 24/7 on an open campus. Working with these kids it was realized that
delinquent kids are anxious. This means
that their issues are highly treatable. Dr. Friman speaks of one of Boys Town's
biggest failures, Charles Manson. He
showed us a picture of Manson as a young man and then a picture of him
afterwards. Manson had conduct disorder
and social anxiety. He sought to control
his environment and went on to become a societal monster. If he were treated today he would have been
discovered and treated with a very high probability of success.
In terms of
anxiety and ASD, the prevalence of anxiety for those with an ASD is 40% of the
population. Signs of anxiety in ASD
children are excessive repetitive ordering, movement of objects, body
movements, echolalia, and emotional reactions to thwarting. Strategies to help deal with these issues is
to praise and attend to brave behaviors, ignore non-brave behaviors, model brave
behaviors, encourage independence, emotional coaching, set reachable goals and
rewards, create opportunities for change, schedule time to worry, incorporate
the child's intense or unusual interests, and exposure, extinction and
desensitization. Dr. Friman told many
good stories and gave excellent examples to support his methods. He left off the engaging presentation with a
word of advice. "If you are ever overwhelmed, start something you can
finish. A completion generates energy, an incompletion depletes energy."
The conference
closed with a Keynote by Amiris DiPuglia entitled "When did it become a
Choice?" She is an Educational Consultant and part of PaTTAN Harrisburg. She is a mother of 2 children with autism and
one child without. Amiris spoke of how
her heart breaks for those who do not have access to the proper support or
information she was fortunate to have when her children were very young. Having evidence-based practices in place to
treat children with autism should not be a choice, it should be mandatory. Her opinion is that a parent must always
choose the evidence based treatment rather than choosing not to intervene or go
with treatments not based on science.
Taking it further, she discusses how our children with autism need to
learn how to make choices. Some cannot
because they are not yet at the cognitive level to make proper choices. The priority must be set at teaching our
children how to make good choices.
Having choices can have consequences and can even be detrimental, especially
for someone who is not capable of making a proper choice. She states that it is important early on
because it is much easier to deal with a 5 year old than it is to deal with a
full grown adult. Also, motivation and
having value in behaviors and choices are imperative. We need to condition things to become
valuable in our children on the spectrum.
This is completely doable and is proven by the data. Overall, behavioral analysis is the way to
go, as long as they can show the data that improvement is happening! Finally, Amiris ends with a short video of
her children with a song she wrote and sang playing in the background. It got a standing ovation and her children
brought her flowers on stage. It was a
beautiful closing to a very uplifting and optimistic conference. The overall theme was to make the right
choice in terms of treatment.
In conclusion,
the 18th Annual National Autism Conference held in State College, PA was a
remarkable event where the latest research, news, and updates on Autism
Spectrum Disorders were discussed.
I was
very proud and fortunate to be part of many of the sessions.
The opportunities to network with other
professionals, parents, and experts were endless. As many of the presenters
noted, this is one of the biggest and most prestigious conferences on autism in
the United States. Every presenter was focused on research, evidence, and data
to support their methods.
Applied
Behavior Analysis and evidence-based treatments are the best route to go when
treating children and adults on the autism spectrum.
Remember, you can also be part of the
conference by watching select presentations on your computer and downloading
many of the session's materials directly from this website:
http://autism.outreach.psu.edu/agenda/conference-schedule
Jaclyn Hunt is a Certified Autism Specialist (CAS) and Life
Coach who specializes in the Autism and Special Needs Population. She works
with adults on the spectrum, parents of autistic children and adults, spouses
of adults on the spectrum, and anyone affected by autism or other related
special needs. Visit her website to
learn more:
Twitter: @asnlifecoach
Facebook: https://www.facebook.com/AutismAndSpecialNeedsLifeCoach
