Everyday Autism Crap

Chantal Sicile-Kira February 12, 2012

“Nicely, kindly I need u to teach me to do my own crap.”

Such was my son Jeremy’s response when I asked him recently in what ways we could best support him in moving towards being more independent and feeling ready for supported living. Just goes to show you that even when you are living with non-verbals you have to watch what you say. Not just in choosing your vocabulary, but also in what you complain about.

Jeremy has probably overhead me say more that a few times, “I’m so sick of this crap!” when looking at the piles of official paperwork that needs to be filled out, sent in, or filed. And the pile of stuff that just seems to accumulate everywhere if you don’t immediately recycle it or find another home for it.

So I’m not perfect (at least not when verbalizing at home). And Jeremy has been learning to do his own crap, just not enough of it. I guess we need to ante up his crap-load. Stay tuned!

How can parents reduce the risk of sexual abuse of their children (as adults or children) with autism?

Chantal Sicile-Kira February 7, 2012

“I have suffered real abuse. Really if it were not for my mom and my therapist pleading for me, I would have retreated into my world. When the bad thing happened I wanted to die. Greatly my mom and therapist found a way to help me grow from this experience. I learned that there were really bad people that could do things to your body, but I learned that you don’t have to let them into your soul.” – a young man with autism.

Although data on abuse of adults with disabilities is scarce, research on children with disabilities finds that they become victims of abuse at 3.4 times the rate of children who do not have disabilities (Sullivan,T. and Knutson, D., 2001). While many agree that abuse occurs more, those who specialize in the field of abuse & disability believe that for both children and adults, increased victimization is more likely 10 times the rate than for those without disabilities.

According to Nora Baladerian, Ph.D., a licensed psychologist practicing both clinical and forensic psychology, children with disabilities have many of the same needs as any other child, for education, family, safety, recreation, among many others. Most parents of children with disabilities receive information and guidance on these aspects of life, but nearly none on the problems of child abuse, sexual assault, molestation, or other types of maltreatment that they may experience. Knowledge is power, and when parents and other family members are aware that their child (or adult family member) who has a significant disability is more likely to be targeted for abuse than other children, they are more likely to implement the risk reduction strategies available to them.

This is one of the reasons Autism College has partnered with the National Autism Association to put on a free online conference, Autism Safety and Crisis Prevention. This series of webinars is sponsored in part by The Social Express. Dr. Nora Baladerian will present on: How can parents reduce the risk of sexual abuse of their children (as adults or children)?, on Saturday, February 11, 8:15am PST – 9:45am PST (11:15am EST – 12:45pm EST)

The webinar will be interactive. There will be an opportunity for those signed up to send in questions ahead of time or while listening to the program. Chantal Sicile-Kira will moderate the Q & A. To register for free, go here. For more information about the other webinars included in this conference, go here. Instructions will be sent to those signed up. (For those who wish to purchase transcripts, they will be made available after the conference.)

Dr. Baladerian’s presentation How can parents reduce the risk of sexual abuse of their children (as adults or children)? will focus on the basics all parents should know about sexual abuse among individuals on the Autism Spectrum. Topics to be included include:

You know your child. How can you prepare your child for this particular danger?
How can you prepare yourself to be not only their educator, but to be a part of an overall strategy to reduce the risk of becoming a victim?
This presentation will discuss the basics of being a knowledgeable parent in the area of sexual abuse, including knowing the signs of possible abuse, designing a plan, and developing a protocol to use for all new persons who you will approve or hire to work with your family.

Nora Baladerian, Ph.D., is a licensed psychologist in Los Angeles, California, practicing both clinical and forensic psychology . Since 1971, long before the crime victimization field as a whole focused attention on the needs of persons with disabilities, she has specialized in working with individuals with developmental disabilities. With an expertise in serving crime victims with disabilities and people charged with victimless sex crimes, she has successfully rallied victim/witness organization leaders, crime victims rights advocates, social service professionals, forensic psychologists, law enforcement, attorneys, members of the judiciary, and others to take up the cause of ensuring that the needs of society’s most vulnerable are not overlooked or otherwise forgotten. In 1986, as a proactive way both to bring together the growing number of those dedicated to this work and promoting greater cross-disciplinary dialog, she began convening national conferences on abuse of individuals with disabilities, hosting the 19th in 2005 with The Arc of Riverside County, and the First Online Professional Conference of its kind that same year. In 2008, the Attorney General of the United States presented her with the National Crime Victims Service Award in recognition of her pioneering efforts on behalf of persons with disabilities and in advancement of the mission of the Office for Victims of Crime of the U.S. Department of Justice.

Many thanks to our sponsor, The Social Express,

Social Learning Made Easy

How Can We Help Prevent Bullying of Students with Autism?

Chantal Sicile-Kira February 2, 2012

A few years ago, I interviewed many adults on the spectrum for my book Autism Life Skills about what were the important areas that concerned them the most while growing up. High on the list was safety. Many of them described feeling terrified during their student years. Practically all recounted instances of being bullied. A recent report from the Massachusetts Advocates for Children (Ability Path, 2011) shows that bullying is still a concern for most students: nearly 88% of individuals with ASD are bullied in school.

This is one of the reasons Autism College has partnered with the National Autism Association to put on a free online conference, Autism Safety and Crisis Prevention, sponsored in part by The Social Express. Dr. Lori Ernsperger will be presenting on The 3 R’s To Bullying Prevention for Students with Autism Spectrum Disorders: Recognize, Respond, and Report, on Saturday, February 11, 10:00 – 11:30am PST (1:00 – 2:30pm EST).

Parents can help by ensuring that their children learn and practice social skills either through the IEP process or after school and at home. However, preventing bullying at school needs to be addressed systematically. Dr. Ernsperger will provide research and specific strategies in order for parents and professionals to create a safe educational environment and follow the legal requirements set out by the federal government on bullying prevention for students with disabilities. The webinar will be interactive. There will be an opportunity for those signed up to send in questions ahead of time or while listening to the program. Chantal Sicile-Kira will moderate the Q & A. To register for free, go here. For more information about the conference, go here.

The learning objectives of Dr. Ernsperger’s presentation are:

Recognize the statistics of bullying
Recognize the warning signs of victims and stereotypes of bullies
Respond to the victims of bullies
Respond to bullies effectively
Teach anti-bullying social skills
Report bullying incidence in school settings

Dr. Lori Ernsperger is from Henderson, NV where she is the owner of Autism and Behavioral Consulting. Dr. Lori received her doctorate in Special Education from Indiana University. She has over 25 years of experience working in the public schools as a classroom teacher, administrator, and behavioral consultant. She is also an adjunct professor at St. Petersburg College in Florida. Dr. Ernsperger currently provides staff development and conference workshops to school district personnel and parents. Her workshops cover the following topics: Managing Problem Behaviors, Implementing Effective Instructional Methods, Designing Appropriate and Functional Data Collection Methods for the Classroom, Practical Strategies for Working with Individuals with Asperger Syndrome, and How to Get Your Kids to Eat. Dr. Ernsperger is the author of: Keys to Success for Teaching Students with Autism and Just Take a Bite: Easy Effective Answers to Food Aversions and Eating Challenges and Girls Under the Umbrella of Autism Spectrum Disorders.

Many thanks to our sponsor,The Social Express, “Social Learning Made Easy.”

Beyond Brochures

Chantal Sicile-Kira January 25, 2012

How to research and evaluate premium college support programs for students with learning disabilities.

By Wendy Byrnes and Eileen Crumm, Ph.D.; Finding Solutions LLC

GETTING STARTED

In recent years, more and more students with disabilities have graduated from high school and entered the post-secondary educational environment of college or vocational training. The good news is that in response to this population’s unique learning profiles, a growing number of programs that offer support to those students have emerged. Such programs may offer a menu of specialized or premium services that can include academic tutoring, liaison with post-secondary programs, coordination services, life skills instruction, social skills training, coaching and mentoring, vocational education, job internships and job placement.

Students with disabilities that are leaving high school should look for classes or a course of study that interests them. It may include community college, vocational and certificate programs or a university. This is a daunting task for many students, as they plot their course in life – hopefully independently. College is achievable with preparation and meaningful supports and it is particularly important that students take ownership of their future, whenever possible. A question that must be asked is “Who is holding the expectations for what will happen once a student leaves high school?” Parents and professionals need to continue to mentor and advocate for the transitioning student while aligning future expectations with desires and capabilities.

While supported programming holds the promise of helping a student transition to a productive, young adult life, no one program will provide a panacea. Due diligence should be done when investigating various options and looking well beyond any program’s brochure and marketing efforts is an absolute must. The old adage of “wherever you are, there you go!” provides a healthy measure of truth for consideration in whatever plans are made. Students and their families (along with professionals that may support the transition process) should be informed and empowered to find the most current and appropriate range of options.

As the demand for specialized support programs has increased, so then has the supply. Recognizing an opportunity for additional areas of service, various colleges, universities, for profit and nonprofit organizations have attempted to fill a void for services. However, the population they propose to serve is far from homogeneous. Rather it consists of young adults who share a tremendous desire to succeed and be independent, but have varying ability and skills to do so. This means that a program needs to have both depth and breath in order to successfully serve its intended clientele of young adults with disabilities.

Some students with disabilities who enter college may be unprepared to manage their new-found independence and freedom. They may struggle with navigating the new terrain of a college environment and be more fragile emotionally and socially. The fortitude of even the highest achieving student is tested when managing the ever-changing priorities of juggling classes, course work and living away from home. For students with organizational or processing issues, the stress may be magnified many times over.

Programs that support students should be earnest and committed to the initial and long- term success of the student. Students and parents may be vulnerable to programs that appear to make big promises and in the end, deliver less than desirable results.

Building a quality program takes time, expertise and commitment. But to meet the rise in demand, programs can be put into place too quickly. They may not have robust organizational structures and could fail to meet the divergent needs of their target population. Others are too new to show any real or meaningful outcome data, so it becomes difficult to judge whether attending such a program would actually help a youth to become a successful adult. The mission of any program selected should match the individual student’s expectations and needs.

Families who have pursued independent programming or services in the past for their children may have more familiarity with the specialty program or school selection process. However, others that have used public school services or may be sending a young adult off for the first time will find they are navigating in unfamiliar terrain that can be overwhelming. Investigation, planning and close examination of potential programs ahead of time can save costs and avoid buyer’s remorse in the long run.

PROFILE OF THE SERVICE PROVIDER

First, exactly what kind of program is being considered and what college(s) or vocational programs does it affiliate itself with? Is the program embraced and supported by the faculty and administration of affiliated institutions? How inclusive is the program with regard to the general population of students? Are services centralized or decentralized and what other resources may be available such as counseling, writing centers or assistive technology labs?

Check that the associated colleges and vocational programs are ones that the student would actually want to attend. Ensure that the classes that he/she may take (whether it be ceramics or physics) will be offered at the institutions affiliated with the support program.

It would be important to visit places like the office of specialized services of the associated campuses and get a feel for how they deliver overall educational services and supports to students with disabilities. Although both the Americans with Disabilities Act and Section 504 of the Vocational Rehabilitation Act of 1973 protect students in higher education, some schools and programs are much more willing to make accommodations for students with disabilities than others. Ask to see printed materials that professors and staff are given to explain various disabilities and the rights and responsibilities of students. Choosing a program that works with an institution offering relaxed time tables for completion of degrees or certificates may be a key element of success for some students.

Another factor to consider is how long the college support program has been operating as some programs are rapidly expanding to multiple sites. Some of the sites may be more established, or offer a different mix of studies, or have a more inclusive student culture. Families and students considering a support program should see how transparent the organization is in the way they operate. Try to get an understanding about the philosophy of the support organization to see how they actually view their work. Ask questions about the experience, training and stability of the staff working with students. How is staff hired, trained and managed? Is there a separate curriculum (for example on life or social skills) that is offered to or required of students? What is the ratio of students to staff?

Find out if the support program is a for profit entity. Contact the Better Business Bureau to see if there have been any complaints or actual lawsuits lodged against it. If it is a non-profit, ask about the stability of the funding to run the program long-term. In either case, get detailed information about the “real price” for attendance. Think about additional costs that may not be covered in the price quoted in the brochures such as housing, additional daily living expenses and out-of-state tuition for the associated college or university etc. Is there financial assistance for students entering the program or support applying for it? Has the program developed any additional links to public funding like the Department of Vocational Rehabilitation or Department of Developmental Services when appropriate? A very clear picture should emerge about the financial commitment involved

APPLICATION PROCESS

How are student’s applications reviewed to make sure they are appropriate for the program? Is their a mandate for complete disclosure to ensure the safety of all students? What is the ratio of students who apply to students who are accepted? What is the general age range and make up of the student body? What does the interview process like? How competitive are the placements for the program? Is there a minimum SAT score and/or other academic requirements to meet? What kind of supplementary information is required as part of the process such as psycho-educational testing or proof of disability in order to be considered for admission?

How involved is the student in the process? Does the support program require new students to review and agree to a standard of behavior? Does it provide liaison to the college to ensure that the student’s disability is appropriately disclosed and that the student can avail of all the supports they are entitled to? Are students expected to know how to explain their disability to staff during an interview? If a student takes medication, are they expected to know what it is, what it is for and whether they manage their medication on their own?

As students move toward programming beyond high school, so much is expected or inferred and while the chronological age of the student may be 18, maturity and baseline knowledge about self-care may be delayed or emerging. As part of the preparation or application process for college or added support program, families need to think through the level of independence for each student and the upfront knowledge and skill level required to manage classes as well as personal lives.

Students leaving high school may be surprised to find out that the special education process as they may have come to know it has ended and that they will now encounter a new system of accommodation only verses accommodation, modification and remediation. It is important to know about (and obtain) the type of current documentation needed to show how a student’s disability may affect them. Effort is no longer rewarded as much as results and students should be prepared to understand the shifting expectations in college. Assessments that have been completed on behalf of a student need to include recommendations that trigger accommodations.

Another critical question in the investigative process is how is actual recruitment into the support program facilitated? Are there student enrollment targets that sites may be trying to meet? Do consultants, management or admissions staff get incentives for getting students through the door and for keeping them there? How likely is staff retained by the program to pressure students to stay in order to receive said incentives? How much time do the admissions people spend in the actual program to know what is currently happening “on the ground?” What information can they provide on the make-up of the group of students in the program?

Families should check to make sure that marketing efforts and materials presented actually match the specific services that are delivered. Be weary of the brochure that looks too good to be true. Some support programs spend a great deal on marketing efforts to woo students and parents can get caught up in the pressure to place their child.

CONTENT OF THE PROGRAM

Some programs offer a menu of services while others offer a more standardized model. Whichever may be chosen, it is essential to know what is on the menu for a student.

Transitioning to a new school environment is huge for any young adult. Therefore, the first issue that comes to mind is finding out what support exists for the student as he or she transitions into the setting. Are there initiation or orientation processes? What kinds of additional services (if any) exist for any ongoing problems or concerns? Does the program appoint a mentor or “go to” person for an individual student? What is the activation process the student would use if they needed a specific support? How available and approachable is staff to deal with student’s concerns? How well does the student actually articulate their concerns, challenges or needs so that others can support them in their requests?

Beyond academic support, what is in place for assisting students who may have health issues, mental health struggles or a general breakdown in day-to-day functioning? Does the program have a list of trusted allies to which a student can be referred? What training is in place for staff to spot potential problems including abuses, aggression or violence? Is staff trained to recognize when a student may be considering self-injury or suicide?

Is there programming in place for students to support those that are shy, socially awkward or isolated? Are students encouraged and supported to join in the broader community? Are activities mandatory and how are they selected? What happens if a student is fearful to attend group activities? How are disagreements or insults among students handled in a group? How is leadership and compassion encouraged? For particular students, social success may be far more critical than academics as a marker of present and future victories.

When a student falters or experiences additional trouble, what happens? Are there measures in place to assist the student? What happens if the student remains unsuccessful? How willing is the program (and any educational entity related to it) to keep a student enrolled? Is there assistance to look at other options if the current option fails?

Once a student has reached the age of majority, communication will (and legally should be) primarily be with the student and the educational entity and program. Waivers must be signed by students if parents expect to be in the loop for exchanges of information. Some programs want ongoing parent support and others may discourage it. It is important to know the policies and expectations ahead of time.

If a student is going to be housed on campus or nearby, check out how solid, stable and conveniently located the housing is. Is housing that is owned and operated by the program or institution itself offered? What oversight is involved? Who handles maintenance? Are there significant leasing commitments to think about? How are shared expenses for roommates handled? Is there a student handbook that covers rules for co-existence including policies for drug and alcohol use? What is the policy for having guests in the rooms or apartments including boyfriends or girlfriends that spend the night? What happens when roommate issues arise or how might an initial roommate selection process take place? How are matters settled in a dispute? If students are in dorms, what kind of resident adviser support might they get?

Equally important to note is if housing is in a safe neighborhood with nearby amenities. Is it accessible to public transit and are students given any support or instruction to utilize whatever transportation options are available? If the students are housed in apartments, is the general public living there as well and who makes up that population? Families may want to look at crime and local police blotters to see if there has been violent crime reported in the area. Is there limited access to student housing (and supports) during holidays and school vacations?

SERVICE DELIVERY

The next crucial piece to consider is how services are delivered. Does the student self-select for services? What if they need additional organizational support? What kinds of external organizational supports exist? Does someone regularly check in with the student including making sure that outside class assignments are completed, tutoring sessions attended? Is anyone tracking the overall well-being of the student? Are there records to track services that have actually been rendered?

Ask program staff about the kinds of classes that students actually take. Are they credit or non-credit classes? How many students actually complete a degree? If students are taking classes at the support program’s site such as study, life or social skills, how is that measured in terms of success and building upon emerging or existing skills? How is that reported and documented? Is there an opportunity for fluidity in the program or is it more rigid in the way it delivers standard services?

If parents must sign a contract for services, be careful when reviewing and BEFORE signing. Take care to see how iron-clad the contract is and whether there is an escape clause if the program is not successful or a failure to deliver promised services can be substantiated. Can services be prorated? Is there a varied selection of services to choose from? Must a student sign up for all services if only certain services are needed? Is there a dispute resolution process in place for programmatic or contractual issues?

Last but certainly not least, a program should encourage a student with a disability to become the very best self-advocate they can possibly be. Who will help them to understand the ongoing and changing process for asking for appropriate accommodations with regard to their classes or in the workplace if they are learning a vocational trade? Students with disabilities must access post-secondary programs that will steadfastly support them in their earnest efforts to succeed not only academically but in self-awareness and self-determination.

OUTCOMES FOR STUDENTS

Every parent wants to believe that they are sending their child off to a program that offers positive results. With that in mind, what are the reported outcomes of graduating students like? If it is a newer program, what kinds of grades and progress are students making that have entered the program? How is success measured? Some programs feel that getting a student integrated into the general scheme of college life and then letting them spread their wings on their own IS success. Others may want to follow the student through the entire program. Ask for references to gage other’s experiences with the program. Check for blogs that might exist about the program as commentary can be quite sobering to read and content should be checked for its validity. There are also a number of blogs and posts on social media that document local dorm and apartment living so bear that in mind when looking.

CONCLUDING THOUGHTS

Post-secondary, supported programs should create an atmosphere of authentic hope tempered with realism. Many supported programs accept students well past the age of eighteen and there is time to prepare and amass more coping skills and maturity before utilizing a comprehensive supported program if one is actually needed. But students must be ready and motivated before they commit to the program that appears to have the best set of services and supports to assist them in their unique journey toward personal independence and achievement. Being a wise and knowledgeable consumer who has done the needed ground work to find a support program with integrity and commitment to its students will certainly be worth every bit of time and effort involved.

What can you do about your ASD child and Bullying? Sexual Abuse? Suicide Ideation? Wandering? Restraints & Seclusion?

Chantal Sicile-Kira January 22, 2012

As parents and educators of children and teens on the spectrum we have real worries in regards to the safety of our loved ones and students. Here is your opportunity to get some facts and strategies to decrease your worries.

Autism College in partnership with the National Autism Association (NAA) is presenting a series of free on-line conference webinars on Autism Safety and Crisis Prevention. Topics to be addressed are sexual abuse risk reduction, bullying prevention, suicide risk, wandering, and preventing the use of restraints and seclusion. Don’t miss the opportunity to learn how to help support the emotional and physical health and safety of your loved one affected by autism.

This series of interactive webinars to be held in February will include presentations by experts in the field of autism. For those unable to attend all the webinars, there will be audio files and transcripts available for purchase after the conference. Register here for the conference.

Topics, presenters and schedule as follows:

Moderator: Chantal Sicile-Kira, author and founder of AutismCollege.com. The webinars will be interactive. Attendees will have the opportunity to type in questions pertaining to the topic before and during each webinar. Chantal will introduce each presenter and moderate the Q&A opportunity at the end of each presentation.

***Presentation Topic:* *How can parents reduce the risk of sexual abuse of their children (as adults or children)?***

Saturday, February 11, 8:15 PST – 9:45 am PST

This presentation will focus on the basics all parents should know about sexual abuse among individuals on the Autism Spectrum. You know your child. How can you prepare your child for this particular danger? How can you prepare yourself to be not only their educator, but to be a part of an overall strategy to reduce the risk of becoming a victim? This presentation will discuss the basics of being a knowledgeable parent in the area of sexual abuse, including knowing the signs of possible abuse, designing a plan, and developing a protocol to use for all new persons who you will approve or hire to work with your family.

Presenter: Nora Baladerian, Ph.D., is a licensed psychologist in Los Angeles, California, practicing both clinical and forensic psychology . Since 1971, long before the crime victimization field as a whole focused attention on the needs of persons with disabilities, she has specialized in working with individuals with developmental disabilities. With an expertise in serving crime victims with disabilities and people charged with victimless sex crimes, she has successfully rallied victim/witness organization leaders, crime victims rights advocates, social service professionals, forensic psychologists, law enforcement, attorneys, members of the judiciary, and others to take up the cause of ensuring that the needs of society’s most vulnerable are not overlooked or otherwise forgotten. In 1986, as a proactive way both to bring together the growing number of those dedicated to this work and promoting greater cross-disciplinary dialog, she began convening national conferences on abuse of individuals with disabilities, hosting the 19th in 2005 with The Arc of Riverside County, and the First Online Professional Conference of its kind that same year. In 2008, the Attorney General of the United States presented her with the National Crime Victims Service Award in recognition of her pioneering efforts on behalf of persons with disabilities and in advancement of the mission of the Office for Victims of Crime of the U.S. Department of Justice.

Presentation Topic: The 3 R’s To Bullying Prevention for Students with Autism Spectrum Disorders: Recognize, Respond, and Report

Saturday, February 11, 10:00 – 11:30am PST

Bullying in the United States was once a silent epidemic which was endured by millions of children on a daily basis. The attitude “kids will be kids” was just part of normal childhood development. Today, bullying in schools is being recognized as a national problem for all students including children with autism spectrum disorders (ASD). A report from the Massachusetts Advocates for Children (Ability Path, 2011) found that nearly 88% of individuals with ASD are bullied in school. Dr. Ernsperger will provide research and specific strategies in order for parents and professionals to create a safe educational environment and follow the legal requirements set out by the federal government on bullying prevention for students with disabilities.

Learning Objectives:

Recognize the statistics of bullying
Recognize the warning signs of victims and stereotypes of bullies
Respond to the victims of bullies
Respond to bullies effectively
Teach anti-bullying social skills
Report bullying incidence in school settings

Presenter: Dr. Lori Ernsperger is from Henderson, NV where she is the owner of Autism and Behavioral Consulting. Dr. Lori received her doctorate in Special Education from Indiana University. She has over 25 years of experience working in the public schools as a classroom teacher, administrator, and behavioral consultant. She is also an adjunct professor at St. Petersburg College in Florida. Dr. Ernsperger currently provides staff development and conference workshops to school district personnel and parents.

Her workshops cover the following topics: Managing Problem Behaviors, Implementing Effective Instructional Methods, Designing Appropriate and Functional Data Collection Methods for the Classroom, Practical Strategies for Working with Individuals with Asperger Syndrome, and How to Get Your Kids to Eat. Dr. Ernsperger is the author of: Keys to Success for Teaching Students with Autism and Just Take a Bite: Easy Effective Answers to Food Aversions and Eating Challenges and Girls Under the Umbrella of Autism Spectrum Disorders.

Presentation Topic: The Problem of Depression and Suicidal Ideation in Autism and Related Disorders

Wednesday, February 15, 6:00-7:30 pm PST

How often do we think it occurs?
How serious is it?
How do we distinguish serious symptoms from everyday frustration?
What are the risk factors? Are they similar to the general population, e.g. depression, loss, and substance use?
What should we look for? Learning to read the cues.
When should we be very worried? Does the driven quality of those with ASDs make people more at-risk?
What can we do: in everyday life to help prevent depression; when people are sad;
How can we use the mental health system? Are therapies or medications effective? Are there other ways to address depression in ASD?

Presenter: Dr. Joshua Feder is the Director of the Department of Research in the Graduate School of the Interdisciplinary Council on Developmental and Learning Disorders, and a voluntary assistant professor at UCSD School of Medicine. Dr. Feder specializes in neurobehavioral medicine and application of DIR/Floortime with families and in schools. He co-chairs the DIR/Floortime Coalition of California, and co-chairs the South Counties Autism Regional Taskforce (SCART) of the California Senate Select Committee on Autism & Related Disorders. Dr. Feder helped write the American Academy of Child and Adolescent Psychiatry (AACAP) Practice Parameter for Assessment and Treatment of Autism and Related Disorders. He reviews grants for the Organization for Autism Research (OAR) and the National Foundation for Autism Research (NFAR), is a primary clinical investigator for National Institutes of Mental Health (NIMH) and privately funded research in pharmacogenetics with the Child and Adolescent Psychiatric Trials Network (CAPTN). Dr. Feder serves as medical director for SymPlay developing interactive technology and distance learning systems to support relationship based interventions. He is involved in advocacy for family choice in evidence-based practice, and he is a frequent commentator and speaker for ValeriesList and for Autism College. Dr. Feder has a full time child and family psychiatric practice in Solana Beach, California.

Presentation Topic: The Scope of Wandering, Prevention Strategies, and Resources

Saturday, February 18, 8:15 – 9:45 am PST

Incidents of missing children and wandering-related deaths are being reported in the news with frightening frequency. In the last three years, more than 20 individuals with autism have lost their lives due to wandering. Preliminary data in the first IRB-approved study on autism-related wandering shows that half of children with autism have successfully wandered from adult supervision. Families cite wandering as the most stressful behavior they face. Drowning associated with autism elopement is a leading cause of death among children and adults on the autism spectrum. This presentation will discuss the scope of this issue, prevention strategies and provide resources for caregivers to keep their loved ones safe.

Presenter: Wendy Fournier is a founding board member and President of the National Autism Association. The organization has been instrumental in bringing federal attention to the issue of autism-related wandering. In 2010, Wendy and NAA Executive Director Lori McIlwain were invited to present on the wandering/elopement issue before the Interagency Autism Coordinating Committee at NIH, where they outlined the need for data collection, medical diagnostic coding, and federal health agency involvement. As a result, the committee has since implemented several of NAA’s recommendations. In addition to bringing awareness to the issue, NAA has developed extensive resources for the community including the AWAARE collaboration website and the Big Red Safety Box program.

Presentation Topic: Preventing and Eliminating the Use of Restraint and Seclusion

Saturday, February 18, 10:00 – 11:30 am PST

The rising tide of Positive Behavior Supports has not lifted all boats, and many students with autism and related disabilities continue to be subjected to the use of restraint, seclusion, and other aversives as part of their education and behavior intervention plans. Successful reforms have taken place in health care settings, in nursing homes, and in programs treating mental illness, but many of our schools have not yet “gotten the word” that these techniques are inherently unsafe and can result in serious injury, psychological trauma, and even death. Evidence clearly shows that restraint and seclusion are not education; they are the failure of education. This webinar will help parents, advocates, and teachers understand how to work together to eliminate these highly dangerous and counterproductive techniques.

Presenter: Pat Amos, M.A., has been an advocate for people with disabilities and their families for over 25 years. She is a founder of Autism Support and Advocacy in Pennsylvania and the Family Alliance to Stop Abuse and Neglect, past president of the Greater Philadelphia Autism Society, a founder and past president of the Autism National Committee, has served as a member of Pennsylvania’s Developmental Disabilities Council, and is a Board member of international TASH. She currently works as an Inclusion Specialist with the Youth Advocate Program’s Autism Institute. Her involvement in the movement to prevent restraint and seclusion is longstanding, and she has worked with the national Alliance for the Prevention of Restraint, Aversive Interventions, and Seclusion (APRAIS) since participating in its founding in 2004.

Free -on-line Conference on Autism Safety and Crisis Prevention

Chantal Sicile-Kira January 14, 2012

[Updated! Registration is now live]

Autism College in partnership with the National Autism Association (NAA) is presenting a free on-line conference on Autism Safety and Crisis Prevention. Topics to be addressed are sexual abuse risk reduction, bullying prevention, suicide risk, wandering, and preventing the use of restraints and seclusion.

The on-line conference Autism Safety and Crisis Prevention to be held in February, will include presentations by experts in the field of autism and safety issues, and broaches sensitive topics with real life strategies. There will be a question and answer session moderated by Chantal Sicile-Kira following each presentation. Don’t miss the opportunity to learn how to help support the emotional and physical health and safety of your loved one affected by autism. Schedule is as follows:

Saturday, February 11, 8:15am- 9:45am PST, Dr. Nora Baladerian, Ph.D. will present “How Can Parents Reduce the Risk of Sexual Abuse of Their Child or Young Adult?”.

Saturday, February 11, 10:00am-11:30am PST, Dr. Lori Ernsperger will discuss “The 3 R’s to Bullying Prevention for Students with Autism Spectrum Disorders: Recognize, Respond, and Report”.

Wednesday, February 15, 6:00pm-7:30pm PST, Dr. Joshua Feder will discuss “The Problem of Depression and Suicidal Ideation in Autism and Related Disorders”.

Saturday, February 18, 8:15am-9:45am PST, Wendy Fournier of the NAA will discuss Wandering .

Saturday, February 18, 10:00am- 11:30,am PST, Pat Amos, M.A. will discuss Preventing and Eliminating the Use of Restraints and Seclusion.

For those unable to attend live, there will be transcripts available for purchase. Register here.

Johnny Depp and My 2012 Goals

Chantal Sicile-Kira January 9, 2012

Someone I met recently commented that they noticed I had not posted a blog here since May 2011. I can’t believe it’s been that long but I’ve been busy co-authoring a book (yes, another autism book!).

But I’m back here today – because I woke up this morning from a really weird dream brought on by my daytime worries. Even if the dream involved Johnny Depp (more on the dream, later), obviously I am overwhelmed and stressed – probably like many of you reading this. And I wanted to share something I hope will be helpful.

After I woke up from my dream (and got over the initial excitement of having visited with Johnny Depp while still in my own bed) I decided enough was enough, and that I had to start walking the talk I give autism parents about taking care of themselves.

So I decided to follow the advice of Chris Brogan. I received an email describing how in the last few years Chris has skipped the tradition of creating New Year’s Resolutions (soon forgotten) and instead he creates three words that describe what he wants to focus on for the coming year. I thought that was a great idea and could help my stress level.

Here are my three words: (none of which are Johnny or Depp):

Produce: I have great ideas, and I follow through when there are clear-cut deadlines ( for a publisher or a speaking engagement), but my own professional projects (AutismCollege.com) and personal ones (exercise, develop my personal relationships, mentor my autistic son Jeremy in reaching his life goals) don’t get completed in a timely fashion. So this year, I will produce the projects I have identified as crucial and dear to my heart. Which takes me to my second word…

Flow: In order to have more time to produce, I need to eliminate distractions and clutter in all areas of my life. I’m interested in so many things and I easily get distracted so I am learning to have blinders like a racing horse does and focus on the finish line. Horses can still sense what they may not necessarily see, and I hope I have the same instincts when necessary.

Collaborate: Often I am so busy with outside deadlines that I don’t make the effort to spend time with people who I could effectively partner with to reach mutually beneficial professional and personal goals. This year, I will focus on collaborating with like-minded people who have similar goals.

Hopefully, what I’ve shared is helpful to you. However, I know most of you just want to hear about my dream involving Johnny Depp (rated PG). So here it is:

I dreamt I was visiting my daughter, Rebecca, who was staying with a musician friend, helping him break into the music business. (Rebecca is a volunteer DJ at the UC Davis radio station). Johnny Depp was staying there as well (big surprise!). While I’m there Johnny asks Rebecca to help him with the computer to hear an on-line training course that is discussing streams of income and sales funnels and handling your wealth. I am nervous meeting Johnny, so I try to make conversation about how Rebecca could use information like that because she is having such a tough time finding a part time job (reality) while at college, and could use money, and as I continue talking I realize that I sound like I am asking Johnny Depp for money and for a job for Rebecca, which I am not. I’m just having a bad case of foot in- mouth disease. I feel really stupid. Only my daughter was more embarrassed than I was. We climb into a small boat to reach the small stage where Rebecca’s musician friend is playing, and getting out of the boat I splash my husband’s best friend from New Jersey, and his wife and practically drown them. Embarrassment after embarrassment. You know the feeling.

That’s my dream. So this morning I woke up, wrote PRODUCE, FLOW, COLLABORATE on a piece of paper and put it on the dining room table (center of the house) and every time I do something now I ask if it fits in with my goals. I’ll keep you posted on how my three words work out.

What are you focusing on this year?

If you are still reading this far and you know Johnny Depp, tell him I’m not asking for money, but if he needs info on autism, tell him to check out my books and websites, and to call me if he has time for lunch. We could collaborate on something. Hopefully, his good looks won’t be too much of a distraction.

Best wishes to you and your family for 2012!

The Affects of Autism in Families and in Partner Relationships

Chantal Sicile-Kira November 13, 2011

By Chantal Sicile-Kira, BA

Editorial Note: This article originally appeared in Family Therapy Magazine in May/June 2008

Family life is all about relationships and communication: relationships between two people in love, parents and children, siblings, extended family members. Yet, autism spectrum disorders (ASDs) are all about communication challenges, misunderstanding of social cues, and lack of emotional understanding, thus affecting every relationship in the family. In marriage, if one of the partners is on the spectrum, there will be more difficulties than the usual marital conflicts. Sibling issues are exacerbated by having an autistic sibling and/or a parent on the spectrum. Communication and social challenges can also impact the adult’s work situation. Before looking at how to best provide support, a better understanding of the particular difficulties autism infuses into the family unit is necessary.

Autism: It’s a Family Thing

It has been estimated that the divorce rate is in the 80% range in families with children who have autism (Bolman, 2006). Despite high rates of marital conflict, many couples do not reach out for couples therapy. Lack of respite is a major reason. For most, finding a babysitter with whom then can safely leave an autistic child who has toileting issues, little communication skills, aggression and other inappropriate behaviors on a regular basis is difficult (Sicile-Kira, 2004). Another reason is their lack of belief that they will find a therapist understanding of their particular circumstance and offer any true guidance, thus preferring to use the precious time away from the child to confide in a good friend.

Marital stress around the child usually starts when one or both of the parents realizes the child is not developing properly. Couples who have a child who does not seek their attention in the usual way (i.e., eye contact, reaching out for or giving of affection, searching them for comfort when hurt) find it hard not to feel rejected or unimportant to the child. For those whose child develops normally and then regresses around 18-24 months, there is the added loss of the child they knew slipping away. Consider also that a couple looks forward to having a child, and each person had his idea of what the expected child will be like. When the child does not match the expectation, or regresses, there is a loss and anguish felt by the parent not unlike the stages of grief that people who lose a loved one experience (Sicile-Kira, 2004).

Other stages of added stress are: getting a diagnosis (family physicians are reluctant to make a diagnosis on a condition once rare for which they have no set treatment plan to prescribe); getting services (a constant struggle); dealing with adolescence (sexual development appears, uncontrolled tantrums can be dangerous as the teen gets bigger); and post high school (the realization that few adult services are available) (Sicile-Kira, 2006).

Keeping any marriage healthy takes time, and all too often, time gets swallowed up by the autistic child’s needs. Many children with an ASD have difficulty sleeping, meaning that at least one of the parents is sleep deprived. Usually, a role division takes place as one parent, usually mom, becomes the autism expert, while dad works harder to earn money or opts out. Differences of opinion exasperate an already difficult situation – how much time, energy and money is to be spent on helping the child is based on personal philosophy, and in this the couple may clash. Over time, dad becomes frustrated at the demands of their wives to interact or play with a child who does not know how, and moms become frustrated at the lack of involvements of their partners.

As well, a common pattern among moms is to wonder what they did wrong – drinking or taking medications during pregnancy, exercising too much, allowing the child to be vaccinated, thus adding feelings of guilt to an already stressful situation. Also, the couple eventually feels isolated because they feel it is hard to take an autistic child to people’s homes and are uncomfortable inviting people over.

Sometimes the couple becomes closer than ever, bonded in their shared circumstances. Unfortunately, usually the stress of dealing with autism and all it entails – the constant and necessary advocacy at school, the fighting for services and supports, the added financial burden, trying to handle behaviors and meltdowns at home – becomes a wedge pushing the spouses further and further apart. Overwhelmed, stressed and exhausted, the couple’s communication becomes impaired and even autistic-like, lacking emotion and reciprocity. This can affect other children in the family.

Grandparents

Unlike the parents who are totally focused on the autistic child’s needs, grandparents are concerned about the effects of autism on their adult children (the parents), other grandchildren and future generations. They also suffer stress similar to that of parents and siblings. Grandparents are concerned about the difficult situations they see their own children experiencing. They may provide the autistic child’s parents (who may be depressed, single, or divorced) with necessary support in the way of childcare, financial support and advocacy. But, they may also contribute to stress because of conflict regarding behavioral symptoms and treatment (Hillman, J. 2007). Sometimes grandparents get involved in the blame-game about the possible causes of the child’s autism, which can be particularly terrible if the couple splits up and there are disputes over custody.

Grandparents may want to help by babysitting, but most do not have the training in behavior management or may not have the physical strength required to handle behavioral episodes. They may just want to play with the child and spoil him/her, and end up feeling rejected by the lack of ‘typical’ exchange.

Siblings

The challenges of having a brother or sister on the spectrum can have both positive and a negative effects on a sibling. The factors that affect how a sibling adjusts include: family size, severity of the brother or sister’s impairment, age of the sibling at the time of the diagnosis, gender and age of sibling, and their place in the birth order. The parents’ attitudes and expectations have a strong bearing on how a sibling adjusts.

Many siblings develop a maturity and sense of responsibility greater than that of their peers, take pride in the accomplishments of their brother and sister and develop a strong sense of loyalty. Siblings of ASD children are usually more tolerant of differences in people and show compassion of others with special needs. However, many siblings feel resentment at the extra attention the child with autism receives, and some feel guilt over their good health. When little, they may think they can ‘catch’ autism from their sibling. They may also feel saddled with what they perceive as parental expectations for them to be high achievers. Many feel anxiety about how to interact with their brother or sister, and feel rejected by the lack of reciprocality. Often there is a feeling of resentment at having to take on extra household chores, coupled with restrictions in social activities. When one of the parents has AS, this creates another set of challenges.

An Asperger Marriage

As Asperger’s Syndrome (AS) has only been recognized since 1994, there are many adults with AS who have been misdiagnosed and treated for mental illness. Although traditionally 3 out of 4 children diagnosed with an ASD are male, there is growing consensus that there may actually be more females with Asperger’s Syndrome who have been misdiagnosed with other conditions. Keep in mind that the information below is based on heterosexual partnerships, although same- gender relationships occur just as it does in the population as large.

Sometimes the diagnosis of an adult follows that of their child, sometimes it follows marriage therapy, and sometimes it is problems at work that finally lead to a diagnosis. A spouse may seek out a therapist with complaints of a cold, uncaring, and unemotional husband, although she may have chosen her mate because he appeared calm and reliable. An AS adult may appear depressed because of the flat affect, monotone and lack of direct eye contact. Others may appear controlling and rigid, insisting everyone in the household stick to the same schedule and participate in the same activities, due to a need for sameness and inability to empathize. It is this lack of empathy that has the biggest impact on the partner with AS ability to understand their spouses, as well as any children, and to recognize that their needs, perceptions and thoughts are different from their own (Aston, M. 2005). Poor empathy in the AS parent may contribute to behavioral and psychological problem in the children. However, a parent with AS, may be better able to better understand and cope with the a child who has the same diagnosis.

Anxiety and stress can run high in adults with Asperger’s due to the difficulties in communication and social interaction. Most lack what we think of as ‘common sense.’ Body language and subtexts of intonations are lost on them, so that they may hear the words that were spoken, but not understood the real message or context. Persons on the spectrum can be honest to a fault and may make inappropriate comments in public, thus appearing rude and uninterested in social situations.

These same communication problems effect a person’s ability to keep a job or move up the corporate ladder. Temple Grandin PhD, author of Thinking in Pictures and animal scientist, often speaks about how she almost got fired from her first important job because she kept writing letters to the CEO telling him how he could improve the company. She had no clue that the hierarchy at work dictated how, what, and to whom you communicate. Often times when a company is downsizing, the people laid off are the those who did not establish social relationships at work.

Physical demonstrations of affection can be difficult for those adults who suffer from sensory processing disorder and are overly sensitive to touch. Often the AS spouse is surprised that his partner and children are feeling unloved and unsupported, not realizing that his behavior does not show the support and love he says he has for them. The inability to read non-verbal communication makes it difficult to differentiate between when their partner wants to have intercourse or just a snuggle. Some couples report that the partner on the spectrum insists on routine even in sexual activity (Aston, M. 2003).

Finding out that a partner has an ASD can provoke different feelings. One of them is anger at missing out on aspects of a marriage that the partner was looking forward to. Another feeling is relief that the partner is not trying to shut the other one out, he is just unable to provide the emotional response needed (Slater-Walker, C., and Slater-Walker, G. 2002). For children the reaction is similar. The positive aspects of having a spouse with Asperger’s can include the realization that they are in most cases loyal, honest and dependable. Those who are diagnosed as adults who knew they were different feel empowered and relieved once they receive the diagnosis, as now they have a starting point for finding strategies that are helpful (Carley, M. 2008).

How Therapists Can Help

There many ways in which therapists can help the family unit. For all those who need more information or need access to a support group and are not yet hooked into recourses, the Autism Society of America has local chapters that can be helpful. www.autism–society.org

Couples need to be encouraged to acknowledge and face the emotions of the grief cycle (i.e., denial, grief, depression, anger) and the loss of the child they were expecting, and to work through these emotions. Misdirected anger is often released at school personnel in Individualized Educational Program (IEP) meetings or taken out on service providers, thus alienating the very people who are there to help them.

Encouraging couples to regularly schedule time together without the children is important. However, this suggestion is useless unless the therapist can support them in devising a practical plan for finding the respite help they need.

The lack of qualified babysitters can be a very real obstacle to finding time together or continuing therapy. Working on good communication skills and looking at how they can support each other is important. The couple needs to realize and accept that their partner may react differently to having an autistic child and a different viewpoint when it comes to how much effort and money to put into treatment, as well as what kinds of treatments to pursue.

Encouraging dads to take a more active role with agreed upon treatments, generalizing some of the skills the child has learned through his ABA (Applied Behavioral Analysis) program, helping with structure, limit setting and discipline can be very helpful. For this to occur, dad needs more information and training. Perhaps coming up with some dad-oriented informational materials could be useful. A good on-line support group for dads is http://www.fathersnetwork.org/

In the same way, providing available and willing grandparents with information and a little training that can enable them to step in and give the parents a few hours of respite can be beneficial to all involved. Explaining to them why their grandchild acts they way they do (i.e., sensitivity to sound and light, not being able to make sense of the world, lack of communication skills) is helpful. Suggesting they offer to do a specific task, such as teaching the child to catch and return a ball or play a simple game, or teach a simple learning skill which needs much repetition and positive reinforcement, can be helpful. In this way they could understand both the effort needed and the excitement to be had in teaching their grandchild an interactive skill. Grandparents will feel empowered knowing they are making a positive difference in the family’s life, the parents will feel supported and more relaxed. Information geared towards grandparents can be found on the Grandparent Autism Network at http://www.ganinfo.org/organization.aspx

To the non-autistic sibling, knowing that they can ask questions and discuss their feelings about their sibling and autism is important. By helping parents understand the needs that siblings have is helpful, as sometimes these get lost in the shuffle. The non-autistic children need some quality time alone with their parents on a regular basis Parents need of be aware of the sibling’s feelings in order to develop strategies of support to help him/her adapt.

Providing the siblings with information about autism (such as why their sibling acts they way he does) in a positive manner at their age level is necessary, and there are many children’s books available now that that can be very helpful. Joining a support group for other siblings of special needs children can be extremely helpful so they do not feel they are the only ones going though this, see www.siblingsupport.org/sibshops for more information.

The siblings need to be reminded often that they have just as much of their parents’ love as their autistic sibling, even if parents may need to give more time and attention to their brother or sister with autism. It is important that the non-autistic sibling have a private autism-free zone to call their own, and a secure place to keep their precious objects. They also need to see that the sibling with ASD is given consequences if he wrecks their things, and that he is expected to improve his behaviors over time. For children of an AS parent,

For a mixed marriage between an Asperger and a non-autistic partner to work, each spouse needs to recognize the differences they have and why. If the partner with Asperger’s refuses to acknowledge that his behaviors and actions towards his/her partner are unacceptable, then there is little hope for the relationship.

Understanding the deficits, reinforcing the strengths and acknowledging the needs of each partner is helpful. Teaching the willing AS partner behaviors that are important to his spouse (such as greeting her when he walks in the house, asking about the partner’s day at work, giving her a kiss) is effective. Research for my new book (Autism Life Skills to be published by Penguin October 2008) indicates that those willing to learn can be taught expected behaviors and strategies. Some of these include teaching them the ‘hidden curriculum’ (i.e., what non-autistics automatically learn and take for granted, making lists for visual learners). For more social competence at work, having a mentor there who can explain the non-autistic expectations, and writing a list or drawing a map of the hierarchy and expected communications at each level can be well-worth the effort. GRASP – The Global and Regional Asperger Syndrome is a good on-line network for people on the spectrum www.grasp.org Information for partners and families can be found on these two websites : Asperger Syndrome Partners & Individuals, Resources, Encouragement and Support. www.aspires-relationships.com ; Families of Adults Affected by Asperger’s Syndome wwww.faaas.org.

Author Biography

Chantal Sicle-Kira, BA is President of Autism Making A Difference,Inc. which provides consultation, training and seminars on ASDs. She is the author of Autism Spectrum Disorders (2005 ASA Outstanding Book of the Year), and Adolescents on the Autism Spectrum Disorder, both published by Penguin. Her third book Autism Life Skills will be published Oct 2008.

References

Aston, M. 2003. Aspergers in Love: Couple Relationships and Family Affairs. London: Jessica Kingsley Publishers.

Aston, M. 2005 “Growing up in an Asperger Family.” Counseling Children and Young People (CCYP) Journal.

Autism Society of America, 2008. “Family Life.” http://www.autism-society.org

Bolman, W. 2006. “The Autistic Family Life Cycle: Family Stress and Divorce.” asa.confex.com/asa/2006/techprogram/s1940.htm.

Carley, M. 2008 Asperger’s from the Inside and Out: A Supportive and Practical Guide for Anyone with Asperger’s Syndrome. New York: Perigee.

Hillman, J. 2007. “Grandparents of Children with Autism: A Review with Recommendations for Education, Practice, and Policy.” Educational Gerontology, P 513-527.

Sicile-Kira, C. 2006. Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical and Transition Needs of Teenagers with Autism Spectrum Disorders. New York: Perigee.

Sicile-Kira, C. 2004. Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger’s Syndrome, Pervasive Developmental Disorder, and Other ASDs. New York: Perigee.

Slater-Walker, C., and Slater-Walker, G. 2002. An Asperger Marriage. London: Jessica Kingsley Publishers.

Preparing Your Teen or Young Adult for Work in the Real World

Chantal Sicile-Kira November 4, 2011

“Jeremy does not like jobs with physical activities but likes to work with ideas and be able to tell others what to do…. As the case manager, I see Jeremy’s strong assets like working data, communicating with people to purchase/buy/manage a business. He is able to do gross motor activities, but often finds fine motor activities difficult and frustrating. Jeremy needs more opportunities exploring jobs and finding out what he would do to have fun and earn money. These last two ideas are very important to Jeremy.”

The above was part of information given to us by one of Jerey’s favorite teachers during an Individualized Education Program (IEP) meeting a few years back.

Jeremy is older now, but like all parents my husband and I worry about what his future will look like. Jeremy is now 22 years old, and with the economic situation being what it is, we are doubly concerned about the financial aspects of Jeremy’s life as an adult. But as the saying goes, worry gets you nowhere – fast. Preparing, planning and creative thinking is a better alternative to wringing our hands.

When thinking about employment for your child or student on the spectrum, there are a few aspects that need to be focused on: the life skills he or she needs to learn; a clear understanding of what employers look for in an employee; the interests and strengths of the person on the spectrum; the usefulness of mentors; and the different employment structures currently available. In this post, I’ll be discussing necessary life skills and what employers look for.

Necessary Life Skills

In my book, Autism Life Skills : From Communication and Safety to Self-Esteem and More – 10 Essential Abilities Every Child Needs and Deserves to Learn, the ten skill areas covered are important for all aspects of life, whether at work, at school, at home, or in the community. Some of the skills such as self-regulation, independence, social relationships, and self-advocacy are important for getting and keeping a job. The topic of earning a living is the last chapter in my book, because being able to get and hold a job is really a culmination of all the life skills hopefully learned during the school -age years, whether a person is on or off the spectrum. For example, for someone to be accepted in a workplace, he must be able to control his emotional and sensory meltdowns. A certain amount of independence is needed at most jobs. Understanding that you should speak to your boss differently than you would to a colleague is important to know in most work situations. Self advocacy skills are necessary in order to request what you need to get the job done.

Life skills in general should be broken down and translated into IEP goals and objectives, especially during middle school, high school and transition years. Obviously, everyone is different and the skill level reached for each of these skills is different depending on the person, but every student needs to learn a minimum in order to live and work in the community.

What Employers Look for When Hiring

Too often, when looking for a job placement for a person on the spectrum, people take the approach of asking for handout, or a favor. We need to approach this differently. I took a look at the top 10 skills and attributes most employers look for as identified by the Bureau of Labor (Job Outlook, 2003) and I discovered that many of those attributes are attributes people on the spectrum have, yet rarely do we sell those attributes to prospective employers. Here’s the top ten of what employers look for: honesty and integrity; a strong work ethic; analytical skills; computer skills; teamwork; time management and organizational skills; communication skills (oral and written); flexibility; interpersonal skills; motivation / initiative.

Now, many of you reading this are probably focusing on the skills in this list your child or student does not have. Look at it again, and think about what attributes your child does have. For example, most people on the spectrum are honest to a fault – they are usually the ones in the store saying “yes” when a woman trying on a dress says “Does this make me look fat?” They are not the employees who will be caught with thier hands in the cash tills. That’s a positive point to sell. A strong work ethic applies to most of our guys – the ones who do not like a change in routine and are going to be there rain or shine. They will not be calling in sick because they had one too many martinis the night before, or leave early because they have an event to attend. Analytical skills are really ‘obsessive attention to detail,’ and many of our children have that. The child who likes to line up blocks and trains probably has good organizational skills. Teamwork and flexibility are difficult areas for many, but we should be teaching flexibility at school (there are ways of doing that), and teamwork can be handled by ensuring the person on the spectrum has one person on the team that he is in contact with for all needed information. Many of our children with Asperger’s are good communicators, and some have become journalists, speechwriters and professors.

The point is, when people are selling a product and/ or service, they market the positive attributes, not the negatives. And that’s precisely what we need to be doing with any prospective employee on the spectrum.

In my next post, I’ll discuss the interests and strengths of the person on the spectrum, and the usefulness of mentors.

Employment on the Autism Spectrum

Chantal Sicile-Kira November 4, 2011

By Zosia Zaks, M.Ed., CRC

Introduction

I recently heard that 97% of adults on the autism spectrum in the United States are not working. I don’t have the source for this data. Even so, we all know that the rate is too high. Something is amiss.

I believe that all adults can work and need to work. Work is more than just earning money to survive. Adults want to do jobs that make them feel proud. Work is about contributing to society. Even if that contribution happens in an alternative format, this is how a person senses his or her dignity. Therefore, the autism community must urgently address this issue of severe unemployment and underemployment.

Vocational Rehabilitation: Sometimes a Good Option

Many disabled adults look for services and supports from the federal-state vocational rehabilitation system. Autistic adults can also avail themselves of what VR has to offer. VR is staffed by different types of professionals, including Certified Rehabilitation Counselors (CRCs) who are trained to provide a mix of counseling, education, skills supports, measurement of work strengths and weaknesses, and advocacy with employers.

Realize, though, that you must qualify for services from VR. Unlike special education, which is a right, you are not entitled to any supports or assistance in adulthood. At a minimum you will need a fresh diagnosis – a diagnosis from middle school or earlier is probably too old for the qualification process. Also keep in mind that each state calls VR something different: For example, In New York, VR is called Vocational and Educational Services for Individuals with Disabilities (VESID); in Maryland, it is the Division Of Rehabilitation Services (DORS); in Oregon, it is the Office of Vocational Rehabilitation Services (OVRS). States vary in what they offer and how you qualify. You can find out the name, phone number, offerings, and qualification procedures of your state’s VR office by looking at the state government website.

It is never too early or too late to contact your state’s VR office. You can call VR at any time in your life. Even if you are a teenager, you may qualify for testing services that can help you determine your work-related interests, talents, and assets. You may be able to participate in VR programs just for transitioning youth. Your state may have pre- vocational options, too, that let you “try out” different work environments or practice work skills before you graduate.

Keep in mind that the professionals in VR have varying degrees of familiarity with autism. If you have strong communication skills, or if you can live independently your need for support in the area of work may not be understood. You may qualify for a service that sounds perfect, such as a computer repair training program, only to discover that supports and accommodations for autism-related issues in the classroom are wholly lacking. You may qualify for VR funds to develop your own business, but if you need a lot of structure and guidance to get tasks done, self-employment may not be for you no matter how great your business plan is on paper. Creative alternatives for employment support and for finding jobs may be more viable for you.

Creative Supports

If you do not qualify for services from VR, or if the services VR has to offer don’t work for you, what else can you do?

Non-profit and private groups focused on autism are filling the gaps by providing ancillary social skills training, mentors, one-on-one behavior coaching, and longer-term employment supports. Before graduating high school, investigate opportunities and limitations of your state’s VR office, and then find out what is offered by autism-specific organizations in your geographic area. Remember to do this research early. You will need a lot of time to collect information, sort through what you discover, perhaps “test drive” certain supports, decide on the various options, and then actually complete application procedures. Non-profit and private groups have some method of determining eligibility for their programs and services, and you may encounter waiting lists.

If you are not finding the right mix of supports from either VR or autism organizations, then you will need to figure out what you can do on your own. It is possible to hire independent Certified Rehabilitation Counselors, social workers, or career counselors with specific training and expertise in autism for career testing, planning, and goal- setting. A number of families have marshaled a knowledgeable sibling or family friend to step in as a job coach. Parents themselves have approached employers to create work trials or to test-run accommodations. Allow yourselves to be as creative as possible. Just realize that finding, hiring, training, and deploying your own “support team” requires time, financial resources, networking, and diligent planning. Don’t wait until the week before high school or college graduation!

Alternative Paths to a Job

Frustrated by a lack of options or excruciating wait lists at VR and agencies serving autistic adults, some families and adults on the spectrum are finding other avenues to employment success.

Some families and adults on the spectrum find internships, volunteer opportunities, specialized positions, or extended “work trials” in businesses operated by compassionate relatives and friends. For example, maybe your parent’s college roommate would be willing to offer you an internship. Would a cousin let you observe and then try the different positions at his firm? Does your neighbor need someone to fix the computers in her warehouse? I bet she would be thrilled if you offered your services for free – she saves money, and you get experience. You or your parents might be lucky enough to network with a willing employer you’ve never met before, but just think for a moment how many workers your parents, relatives, family friends, and neighbors know. Almost all of us know at least 12 people in 12 different professions. And think of how many people these people know! If your networking skills are not great, this is where family and friends need to step in.

For those who require one-on-one support, tailored apprenticeships may be another alternative work possibility. An apprentice can rely on the journeyman to set priorities, organize job tasks, determine the pace of the work, and interface with customers or business-related contacts – instantly removing most social and executive functioning aspects of a job. Since the apprentice and the journeyman expect a relationship that involves at least some degree of guidance, it becomes natural for the journeyman to impart hidden curriculum wisdom. Apprenticeships can often be created for all sorts of jobs, not just union-based jobs typically associated with the apprentice/journeyman structure.

Some families have placed an adult child into self-employment if the individual works best alone or has a special talent or interest that lends itself to proprietorship or consulting. Self-employment ranges from managing a restaurant franchise to tuning pianos to adjunct teaching at a community college.

Many self-employed people, not just those on the autism spectrum, cobble together several “mini” jobs to equal full-time employment. For example, teaching college classes as an adjunct provides just enough external structure, allowing me to follow the rhythm and calendar of semesters. I also obtain all the benefits of university affiliation – such as library privileges so I can conduct research – without the political and social constraints of being a full-time faculty member. But part-time adjunct teaching isn’t a living, so I also see clients, train professionals, and write articles. My days vary, but I have maximum control over what I am doing and when.

Be sure you have the ability to initiate tasks, direct your own activities, and make decisions under pressure if you are going to consider self-employment. Too many people jump into self-employment without carefully assessing their abilities and strengths. On the flip side, too many people don’t give self-employment a chance. You may be able to find support for any areas of weakness. Some of us delegate to others those tasks we can’t do. You may also discover ways to “patch in” supports that extend your ability to make self-employment an option. For example, you can hire someone to do accounting or to handle business phone calls.

Self-employment should be seriously considered if an autistic adult needs strict control of the work environment or the daily schedule. In my case, I must be able to set up my work spaces to my specifications and I must be able to flexibly arrange what I do each day. I only came to understand this about myself after years of trial and error. If you have severe sensory issues, severe executive functioning issues around the tasks of daily living, or your physical energy level and sleep cycles fluctuate, self-employment may be the only viable work option, in which case you will have to fit your skills into a self-employment framework.

If you are not ready to hold down a job or work for yourself, consider the wide range of alternative options. For example, you can always volunteer doing something related to a special interest. I know someone who has retained much echolalic speech as an adult and his favorite pastime is memorizing and then repeating Disney movies. He adopts almost exactly the precise voice of each character and switches between characters effortlessly. The members of the local senior citizen center absolutely love to hear his rendition of their favorite Disney classics and they appreciate his visits! He may not be earning a wage, but he is certainly contributing to society. Find what you love to do, what you are doing already, or what you are good at doing, and build out from there. Every single adult has something to give to the world.

Lastly, consider all of the other factors of life that can impact employment. This will help you determine what types of supports you might need and how you might go about assembling them. For example, if you do not drive and are not able to tolerate public transit, you will need a job in walking distance or a home-based job and if you need a job coach, then you will have to find one that can travel to your neighborhood. If you don’t understand your transportation challenges in advance, you can’t plan for employment effectively. Specific areas to look at carefully include transit, personal care, dressing, eating, sensory issues, environmental factors, level of physical activity, pace of work, degree of socializing required by the job, anxieties around certain tasks, and executive functioning before, during, and after work.

Again, keep in mind that it can take time to organize a team, hire or consult with experts, make plans, and try out different ideas. Autistic adults often need extended periods to adjust to the work environment. And because of the specific social and communication issues associated with autism, autistic adults may need assistants to do the most heavily social aspects of creating an alternative path to work, specifically networking, cold calling, asking questions, or describing needs and strengths. Remember, the vast majority of positions are not filled by responding to help-wanted ads: Most people get a job via their connections to other people.

Adult Life Skills

As a Certified Rehabilitation Counselor (CRC), I am often asked what skills autistic adults need to find and keep jobs. Personally and professionally, I find the biggest problem is not the actual tasks of a job. Across the spectrum we have talents, skills, and knowledge in abundance. The bigger problem is all the social interactions, the politics of the workplace, the essential networking, and the “hidden curriculum” that is so hard to discern. Therefore, worry less about the specific job tasks you might be given and focus a lot more on social skills, self-regulation, self-advocacy, and flexible thinking.

Some people say, what do my emotions have to do with work? The answer: Everything. You need to be able to figure out what you are feeling, how much of a feeling you are experiencing, and what is socially appropriate to do for that particular emotion and that particular amount of emotion. Also, certain feelings should not be expressed or processed at work. The only way to learn how to identify and cope with your emotions is through practice. Don’t begin practicing your first day of your first job.

Many autistic adults need scales and visual aids to deal with emotions, to regulate sensory processing, to gage physical needs, and to modulate communication. For example, if you are at a very high level of anger because your boss told you that you stacked the boxes incorrectly, you need to know that it is OK to take deep breaths, pace back and forth a few times, or walk to the water fountain and get a drink to cool off, but that it is not alright to show anger to the boss, yell, refuse to continue working, or leave the worksite.

I have to watch my level of sensory integration. I have learned through much trial and error the symptoms that indicate I am overwhelmed or becoming overwhelmed, and techniques to bring my body back to a state of equilibrium. Job coaches need to watch for issues and need to be developing strategies and techniques with you so that you can match your behavior to what is expected of adults in your specific work environment. Occupational therapists can also assist not just with sensory processing but also with physical pacing, expression of emotion, and cognitive self-awareness.

Self-advocacy is important because you will encounter moments when you need to articulate your experiences and ask for assistance or accommodations around your challenges. For example, maybe you know in advance that you have difficulty regulating your amount of excitement. You have worked with your support team to create a sliding scale tool for this emotion that helps you match your amount of excitement to one of five levels and that then provides a visual clue of the appropriate behaviors for each level. You try your hardest to use your scales at work to prevent a meltdown. But without self- advocacy skills you will be unprepared for the day you need an exception. You must be able to say to your manager, “My excitement level is extremely high today and despite

using my strategies, I just can’t get myself calmed down. I need to calm down so that I can concentrate on editing this stack of articles. Can I take a 15-minute break now? I’ll stay 15 minutes late at the end of the day to make up the time.”

You do not need extensive verbal fluency to advocate for yourself. I worked with a young gentleman who now carries an index card with a red stripe on one side and a green stripe on the other side. He shows his boss the red stripe if he does not understand what the boss wants him to do, which always causes him agitation and anxiety. When the boss sees the red stripe, she is careful not to overwhelm him further. She usually stops talking, switches to visual instructions, and often gives him a few minutes of breathing room. Conversely, if he is feeling comfortable with a set of instructions and feels ready to proceed with the next activity, he shows his green stripe.

Flexibility is also crucial and very difficult to teach. Again, visual aids such as “if/then” flow charts can help. Also build up your tolerance for disruptions, interruptions, changes to the schedule, or suggestions from co-workers by rehearsing what you will do and what you will say. Writing conversation scripts in advance helps some of us. For example, if your manager frequently asks you to do tasks in novel ways, a script such as, “I see you would like me to repair the motherboard differently. I’ll try, but I need a few minutes to adjust because I thought I would do it the old way,” might give you the time you need to switch gears, accept new instructions, prepare yourself for a new experience, or cope with your emotions about the change in ways that are appropriate for the workplace. Remember, you can utilize communication cards and other visual strategies to get your point across if talking under stress is too difficult, if talking is not your first choice, or if talking is not an option.

Hidden curriculum is perhaps the hardest component of work life to tackle because the context of an interaction is so important: Something said in one moment may be appropriate or inappropriate depending on what else is going on, who else is in the vicinity, or even who is talking. This is why strategies for behavior, facility with emotions, and self-advocacy are such a crucial foundation for social interaction in the workplace. Should you come to a social moment you do not understand, you will still be able to use your foundation skills to remain calm, act appropriately, and request data or input. While you use your foundation skills to get through the day, you can begin to catalog hidden curriculum information for future use.

An example may illustrate what I mean. Let’s say you are friends with a certain co- worker, and the two of you always have coffee together every morning before starting work. Suddenly, on a Tuesday morning, he walks in the door, ignores you, mumbles “Bad hair day,” grabs his coffee, and slinks into his office, shutting the door. You are left standing there baffled and also upset. Why is he talking about hair? Why did he grab his coffee and go away?

Your solid set of foundation skills come into action: You know what is appropriate to do when you are upset, how to show your feelings, and what techniques help you get yourself back to a regular level. But later, you can investigate to recover the missing hidden curriculum data. You find out from the person sitting next to you that the expression bad hair day means the person is having a bad morning. Now you realize your friend is probably just having a rough day and doesn’t want to talk to anyone yet. In this case, it makes sense not to be offended. You decide to ask how he is doing at lunch.

Here is another example. You start a new job, and on the second day, you observe the boss waving to the UPS guy. He yells out to the UPS guy, “Hey you! Hurry up!” and then laughs. The UPS guy chucks a roll of 2-day stickers at the boss, laughs, scans a box, and steps out.

On day three, you are asked to give the boxes to the UPS guy at the end of the day. He is taking a long time scanning each box. Just like the boss, you say, “Hey you! Hurry up!” The UPS guy scowls at you. After the UPS driver leaves, the boss chastises you for speaking to him inappropriately. You are totally confused, deeply embarrassed, and also worried that you might lose your job. You use your foundation skills to identify these feelings and cope with them privately. You use a script you developed in advance that provides a framework for responding to criticism appropriately. You go back to your job. Later that evening, you call your job coach and ask for the hidden curriculum. Your job coach explains, “Oh! The UPS guy – that is the boss’s cousin! They yell at each other all the time but it is just a joke. You, on the other hand, should not yell at the UPS driver. It does take quite a long time to scan all those boxes and get them on the truck.” You and your coach decide together that the coach will let the boss know you were simply confused but understand now.

These “adult life skills” are absolutely crucial to work success, whether you are folding boxes, illustrating toothpaste tubes for a multinational corporation, answering the phones at a small neighborhood bike repair shop, repairing iPhones, volunteering at a paperclip museum, delivering pizzas on the weekend, reciting Disney movies for seniors, or running an X-ray machine. Don’t discount the importance of these skills. You will use them every single day, no matter what you are doing with your life and no matter how your autism impacts you.

Work Culture

Another key aspect of working that is not considered enough is work culture. If you are an adult on the autism spectrum, or if you are a professional or family member helping an autistic adult, carefully analyze the culture of a workplace and how well the culture matches your needs and values.

I interface with employers on behalf of clients regularly. Part of what I am doing is advocating on behalf of clients who might work there: I am explaining autism and what autistic adults can contribute, I am describing the types of accommodations that might enable an autistic adult to succeed at a particular job, and I am pointing out ways that hiring someone with a specific set of talents or interests will be valuable to the company. But I am also assessing the worksite culture and how the different adults I am assisting may or may not fit in to that culture.

If you just can’t managing the executive functioning of getting into a suit and tie every day, if you loathe the idea of punching in with a time card at an exact time, or if you do not like conforming to a standard pitch line about the company and its activities, I am not going to recommend a position for you at a worksite with a strong corporate culture, strict time requirements, a dress code, and policies on what employees can say about store products. On the other hand, if you need to know exactly when your shift starts and stops, and if you need to know exactly what to do each moment of the day, a corporate environment might be better than a local shop with an informal schedule and rotating tasks.

Some people are going to say, “Isn’t this obvious? If you are scared of heights, don’t become an astronaut.” To a degree the concept of workplace culture in employment planning is a given. But when it comes to autism, this issue magnifies in importance. You must know yourself thoroughly, and whoever is assisting you must take workplace culture into serious consideration.

Conclusion

Because our culture is not a meritocracy, and because the world of work in our society places such an extraordinary emphasis on social connection, autistic adults frequently need extra assistance in this area. Teaching someone how to navigate the social environment at work adroitly is complicated but not impossible.

Keep in mind that learning happens over time. It is totally normal, for example, for adults to try a variety of jobs and fail at several, yet when an autistic person is fired everyone acts as if the world is falling apart. I was complaining to a fellow autistic friend of mine a number of years ago when yet again, a job I was trying was just not working. I was deeply frustrated and disappointed. She said, “What’s wrong with failing? You can always get up and fail something new!” Autistic adults have just as much right to change their minds, fail, try again, adjust, adapt, and grow as any other adult. What you are doing at 20 is rarely what you are doing at 40 or 60.

Often autistic adults do not fit the typical profile of someone who needs employment supports. Autistic adults have a unique learning profile and unique challenges in communicating and socializing that can be difficult to pinpoint or to address with typical accommodations and services. When it comes to autism, it is vital to put all notions aside. I know autistic adults with verbal fluency and master’s degrees who need visual aids and a job coach to maintain employment. I also know autistic adults who use electronic communication devices and need supports around basic activities of daily living and they are extraordinarily successful at college and have much to contribute to their chosen fields of endeavor. Always presume ability while simultaneously investigating openly what someone’s support needs might be.

In conclusion, I restate my unequivocal belief that all adults on the autism spectrum have something to contribute to their communities and to the world. It is up to the rest of us to help each one reach his or her potential. When society broadens our value of all types of positive contribution, the chances to create a high quality of life full of dignity and activity go up.

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Saturday, February 11, 8:15 PST – 9:45 am PST

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Presentation Topic: The Problem of Depression and Suicidal Ideation in Autism and Related Disorders

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How to research and evaluate premium college support programs for students with learning disabilities.

Topics, presenters and schedule as follows:

Presentation Topic: How can parents reduce the risk of sexual abuse of their children (as adults or children)?

Saturday, February 11, 8:15 PST – 9:45 am PST

Presentation Topic: The 3 R’s To Bullying Prevention for Students with Autism Spectrum Disorders: Recognize, Respond, and Report

Saturday, February 11, 10:00 – 11:30am PST

Presentation Topic: The Problem of Depression and Suicidal Ideation in Autism and Related Disorders

Wednesday, February 15, 6:00-7:30 pm PST

Presentation Topic: The Scope of Wandering, Prevention Strategies, and Resources

Saturday, February 18, 8:15 – 9:45 am PST

Presentation Topic: Preventing and Eliminating the Use of Restraint and Seclusion

Saturday, February 18, 10:00 – 11:30 am PST

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***Presentation Topic:* *How can parents reduce the risk of sexual abuse of their children (as adults or children)?***