Saturday, September 6, 2014

The 18th Annual National Autism Conference

The 18th Annual National Autism Conference
State College, Pennsylvania
By, Jaclyn Hunt MA, CAS

            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 Aspergers 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:

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