Highlights from the August Autism Conference
By Jaclyn Hunt MA, CASs
This year’s National Autism Conference was held at the Penn State Conference Center Hotel from August 4 – 7th. It was comprised of keynotes, presentations, and workshops designed to share the latest information on Autism Spectrum Disorders.
On average, 1,500 to 1,800 people attend this particular event, and because there was a Children’s Institute where parents could bring their children during the conference, 96 children were able to participate this year. The hotel was autism-friendly and created a very safe and accepting environment for families on the autism spectrum. For those who were not able to attend, condensed summaries of the presentations have been provided.
Monday August 4, 2014
Welcome – Pat Hozella, Director of the Bureau of Special Education in Pennsylvania
Hozella focused on how 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 be increasing. This conference looked to seek input from the attendees on how to best handle this growing issue.
Opening Keynote – Dr. John Bailey
Dr. Bailey has been in the field of behavioral analysis for nearly 45 years and shared an account of his being an expert witness on a federal case in Miami Florida Fifth Circuit Court K.G. v. Dudek. 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.
Update on Autism Research – Alice Kau, Ph.D
Kau gave the final presentation updating 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.
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 four for Autism Disorder and Pervasive Developmental Disorder while the average age of diagnosis for Asperger’s Disorder is age six.
Bringing Science to the Community: A New System of Healthcare Delivery for Infants and Toddlers with Autism Spectrum Disorders – Dr. Ami Klin
Dr. Klin provided exciting, new information to the conference in regards to where autism is heading. At his Marcus Autism Center in Atlanta, GA they serve 6,000 children. The earliest treatment so far is in infants and toddlers at 12 months of age, well before the average age of four years old for a diagnosis. In the near future, treatment may begin as early as nine months as 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.
Dr. Klin also 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, one in five siblings with another sibling diagnosed with autism will have autism themselves, another one in five exhibits just a dash of autism symptoms, and three in five will not have autism at all.
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. The ultimate goal that Dr. Klin expresses is to make autism an issue of diversity, not disability.
Tuesday August 5, 2014
Equipping Youth with Disabilities for the World of Work: Engaging Youth, Schools, and Communities to Improve Transition Outcomes – Erik Carter, Ph. D. Associate Professor of Special Education at Vanderbilt University
Dr. Carter 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. Forty percent of autism graduates in TN never work one day of their life four 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 four 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.
People with ASD: Contact with Police and Public Safety Professionals – Dennis Debbaudt
The second breakout session of the day I attended was led by Debbaudt who spends much of his time training law enforcement on this very issue due to his own personal experiences raising his own son with autism. Autism training is especially important for law enforcement for there are no prisons for those with autism, there are only prisons. 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 vulnerable 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.
Wednesday August 6, 2014
Transition, Adaptive Behavior, Employment, and Community Living for Individuals on the Autism Spectrum – Peter F. Gerhardt, Ed.D
Gerhardt presented the morning session that I attended. He is part of Peter Gerhardt Associates, LLC, the Organization for Autism Research as well as part of the Behavior Analysis Center for Autism. Gerhardt gave a very thorough overview of what needs to be done in real life circumstances with our children on the autism spectrum. He stressed 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, Gerhardt went on to discuss 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 as we need to find an acceptable level of risk. He uses the example of a neurotypical girl getting lost driving 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 Gerhardt brought up was about what is being taught to 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 outlined better goals for the conclusion of high school. He suggested young people with autism leave school employed at least 20 hours per week, minimum. Second, a social support network should be in place centered on where the graduate lives, works, and recreates. Third, the graduate should be able to follow directions and initiate actions on his/her own, and lastly, be able to 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.
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.
Puberty, Dating and Healthy Sexuality for Individuals with ASD and Asperger’s Syndrome – Isabelle Hénault M.A. Ph.D. from Montreal Canada in collaboration with Dr. Tony Atwood, Ph.D. from Brisbane, Australia.
Hénault’s Montreal Clinic, Clinique Autism and Asperger of Montreal, seeks to help those on the spectrum with relationships and sexuality. Her 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. She stated 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 stressed that every single one of her clients finds information about sexuality from pornography as they often 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. 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. 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. The law does not recognize the difference between a confused person with autism who has accidentally downloaded 2,000 child pornography pictures and 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.
Thursday August 7, 2014
Fear Lives in the Hearts of Men and Women and Danger is a Ubiquitous Human Experience – Dr. Patrick Friman.
Friman began by describing how anxiety is a natural state for our species – how we need anxiety to survive. It is very hard, however, to define anxiety as 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.
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. 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.”
When Did it Become a Choice? – Amiris DiPuglia, Educational Consultant and part of PaTTAN Harrisburg
A mother of two children with autism and one child without, DiPuglia 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 discussed 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 stated that it is important early on because it is much easier to deal with a five-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.
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
This article was featured in Issue 23 – Preparing for Tomorrow