Beyond Brochures

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?

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.

Register here for the conference.

The Affects of Autism in Families and in Partner Relationships

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.

 

 

 

Autism College to present free live Q&A with author Tom Fields-Meyer

September 10, 2011

Autism College will present a free live Q & A on Monday, September 19, from 6:00 to 7:00pm PST with Tom Fields-Meyer, moderated by Chantal Sicile-Kira. Tom is the author of the recently published book: FOLLOWING EZRA: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son, moderated by Chantal Sicile-Kira. Sign up for this webinar at the bottom of this post. The publisher has generously agreed to send a free copy of the book to one of the Q & A participants, so send in a question and you may get more than just an answer!   

About the book, from the Following Ezra website:

When Tom Fields-Meyer’s son Ezra was a toddler and showing early signs of autism, a therapist suggested that the father allow himself time to mourn.

“For what?” he asked.

The answer: “For the child he didn’t turn out to be.”

That moment helped strengthen Tom’s resolve to do just the opposite: to celebrate the child Ezra was becoming, a singular boy with a fascinating and complex mind. Full of unexpected laughs, poignant moments and remarkable insights, Following Ezra is the riveting story of a father and son on a ten-year adventure, from Ezra’s diagnosis to the dawn of his adolescence. An engaging account of a father gradually uncovering layers of a puzzle, it rejoices in each new discovery and exults in the boy’s evolution from a remote toddler to an extraordinary young man, connected to the world in his own astounding ways.

Unlike other parenting memoirs, Following Ezra isn’t about a battle against a disease, nor is it a clinical account of searching for doctors, therapies or miracle diets. Instead, Fields-Meyer describes—with humor and tenderness—the wondrous, textured, and often surprising life one experiences in raising a unique child.

“This story will illuminate the experience of parenting a child with autism for those who don’t know it, and will resonate with those of us who know it all too well,” says novelist Cammie McGovern. “There are blessings along the way, and Tom Fields-Meyer depicts them beautifully.”

About the author, from  the  Following Ezra website:

Tom Fields-Meyer has been writing stories for popular audiences for nearly three decades, specializing in telling meaningful and worthwhile narratives with humanity, humor and grace. In twelve years as senior writer at People, he produced scores human-interest pieces and profiles of newsmakers. He penned articles on some of the biggest crime stories of the day (from the O.J. Simpson trial to the murder of Matthew Shepherd), profiled prominent politicians and world leaders (Nancy Pelosi, Pope John  Paul II, Sen. Ted Kennedy), and demonstrated a pitch-perfect touch writing tales of ordinary people overcoming life’s challenges in inspiring and compelling ways.

Tom also lends his skills to help others to put their compelling personal narratives into words. He teamed up with the late Eva Brown, a popular speaker at The Simon Wiesenthal Center’s Museum of Tolerance, to write Brown’s memoir, If You Save One Life: A Survivor’s Memoir (2007). Wiesenthal executive director Rabbi Marvin Hier called the book “very significant and meaningful…an everlasting and important legacy…and a reminder to future generations that championing tolerance, justice and social change are everyone’s obligation.”

Tom collaborated with Noah Alper, founder Noah’s Bagels, the successful West Coast chain, on Alper’s memoir: Business Mensch: Timeless Wisdom for Today’s Entrepreneur (2009). Publisher’s Weekly said: “This earnest book shines with Alper’s conviction, business savvy and decency.”

In September 2011, NAL/Penguin Books will publish Tom’s memoir, Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son. Full of tender moments and unexpected humor, the book tells the story of a father and son on a ten-year journey from Ezra’s diagnosis to the dawn of his adolescence. It celebrates Ezra’s evolution from a remote toddler to an extraordinary young man, connected in his own remarkable ways to the world around him.

Tom previously worked as a news reporter and feature writer for the Dallas Morning News, where he covered the kinds of stories that happen only in Texas (shootouts in Country-Western dance halls, culture pieces on the State Fair) and once was dispatched to Nevada to investigate a road designated by AAA as “America’s loneliest highway.” As a senior editor at the Chronicle of Higher Education, he traveled the nation’s campuses and once convinced his editor to send him on a 10-day junket aboard a schooner in the Bahamas (an assignment he came to regret, not just because of seasickness). Tom’s writing has appeared in dozens of publications, including The New York Times Magazine, The Wall Street Journal, the Los Angeles Times and Esquire.

A graduate of Harvard University, Tom lives in Los Angeles with his wife, Rabbi Shawn Fields-Meyer, and their three sons.

To sign up for the webinar, please signup for our newsletter here. Already signed up for the newsletter? Click here

 

Free Q & A on Back to School Tips with Dr. Peter Faustino, moderated by Chantal Sicile-Kira

August 9, 2011

By the end of the summer, most of us parents are happy to see summer end knowing our ASD children will have routine and a schedule back in their lives (and so will we).  But  we dread the stress related to the start of a new school year.  There are ways to lessen the stress and help prepare both your child and the teacher for a new and hopefully successful new school year.

Autism College hopes to help this year by offering you a two hour free Q & A with Visiting Professor, Dr. Peter Faustino, school psychologist, moderated by Chantal Sicile-Kira. Both Dr. Faustino and Chantal have written on the topic and are looking forward to answering your questions and giving you tips to prepare your child, yourself, and the teacher for the start of a successful new school year! Whether your child is fully included or in a special day class there are ways to prepare and alleviate some of the stress of the transition from summer to school, especially when there are teachers new to your child or teenager.

Join Dr. Faustino and Chantal on Monday, August 22, 2011 from 6:00 to 8:00pm PST on the topic : Tips for Reducing the  Back to School Stress for Children with Autism, Parents and Educators.

Dr. Peter Faustino has been working as a school psychologist for more than 12 years.  He is currently the President of the New York Association of School Psychologists (NYASP).  NYASP – the state affiliate of NASP (www.naspweb.org) – serves children, their families, and the school community by promoting psychological well-being, excellence in education, and sensitivity to diversity through best practices in school psychology.  Dr. Faustino joined the Bedford Central School District in 2003 to work at the Fox Lane Middle School. Dr. Faustino also maintains a private practice with the Developmental Assessment and Intervention Center (DAIC) in Bedford Hills, NY.  He presents frequently at national conferences, schools, and parent organizations.

To sign up for the webinar, please signup for our newsletter here. Already signed up for the newsletter? Click here.

Summer Updates

August 4, 2011

Recently I have been neglecting Autism College because I’ve been busy writing book #5:  A Full Life With Autism: From Learning to Forming Relationships to Achieving Independence. This book, co-authored with my son, Jeremy, is all about creating a life for a young person with autism. It’s a practical guide – like all my other books- but is really driven by my son’s goals and dreams for his future. At 22, he has many of the same aspirations as any young man, and as his mom (read: biggest advocate) I feel it is my duty to help him create the life he wants to live.

Now that the manuscript is done, I can get back to Autism College; back  to creating a site with practical information and training you can use. First step: getting more articles in the free library (those will be in over the next few weeks) and creating some courses on autism and the teens years, plus the transition to adulthood. Doing the research to write A Full Life has given me lots of new information and tips, and I look forward to sharing them with you.

Meanwhile, Autism College will present a free live Q & A on Monday, August 22, 2011 from 6:00 to 8:00pm PST with Dr. Peter Faustino, school psychologist, which I will be moderating.  The topic will be “Tips for Reducing the Back to School Stress for Children with Autism, Parents and Educators.”

More information to follow soon!

What is sensory processing disorder, and how is it related to autism?

July 10, 2011

Although a sensory processing disorder is not considered a qualifying characteristic for a diagnosis of autism, I have yet to meet a  person on the autism spectrum who does not have a challenge in this area. In interviewing adults and teenagers of different ability levels for my book, Autism Life Skills (Penguin 2008), most of them stated sensory processing challenges as the number one difficulty for them, regardless of where they were on the spectrum.

Sensory Processing Disorder (SPD) is a neurological disorder that causes difficulties with processing information from the five senses: vision, auditory, touch, olfaction, and taste, as well as from the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SPD, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by  people with SPD; the difference is that information is processed by the brain in an unusual way that causes distress, discomfort, and confusion.

For those interested in knowing more about auditory processing, Autism College will present a free live Q & A on the topic on Tuesday, July 19, 2011 from 6:00 to 8:00pm  PST with visiting professor Terrie Silverman, MS, and with Chantal Sicile-Kira moderating. You may sign up here.

Sensory processing – making sense of the world – is what most adults conveyed to me as the most frustrating area they struggled  with as children, and this impacted every aspect of their lives – relationships, communication, self-awareness, safety and so on.  Babies and toddlers learn about the new world around them  by using their senses. At first they put everything in their mouths, they grab your finger with their little fists, then they start using their eyes to look at all those cute baby mobiles hanging over the crib. They learn to recognize the sound of their mother and father’s voices and  other noises.  They start putting meaning to what they are hearing and seeing. The lesser known senses that have to do with balance and body position (vestibular – where are heads and bodies are in relation to the earth’s surface;  and propioceptive -where a certain body part is and how it is moving) are also necessary in order to making meaning of the world around. If  these  are not working properly and are not in synch, they acquire   a distorted view of the world around them and also of themselves.

Most parents and educators are familiar with how auditory and visual processing challenges can effect learning in the classroom. Yet, for many, sensory processing difficulties are a lot more complicated  and far reaching than that. For example, Brian King, Ph.D, a licensed clinical social worker who has Asperger’s, explained that body and spatial awareness are difficult for him because the part of his brain that determines where his body is in space (propioception) does not communicate with his vision. This means that when he walks he has to look at the ground because otherwise he would lose his sense of balance.

Temple Grandin, Ph.D, (Thinking in Pictures, Animals in Translation) is an animal scientist, and successful livestock handling equipment designer. Temple designed and built a deep touch pressure device ‘squeeze machine’ when she was a teenager as she needed the deep pressure to overcome problems of oversensitivity to touch, and helped her cope with feelings of nervousness.

Donna Williams, Ph.D, bestselling author, artist, musician, had extreme  sensory processing challenges as a child and still has some, but to a lesser degree.  Donna talks about feeling a sensation in her stomach area, but not knowing if her bladder is full, or  if it means her stomach hurts because she is hungry.  Other adults mentioned that they share the same challenge especially when experiencing sensory overload in crowded noisy areas.  They shared that they set their  cell phones to ring every two hours, to  prompt them to use the restroom,  in order to  avoid a potentially embarrassing situation.

Many adults on the spectrum find it difficult to  tolerate social situations. Meeting a new person can be overwhelming –  a different voice, a different smell and a different visual stimulus – meaning that difficulties with social relationships are not  due to just  communication, but are about the total sensory processing experience. This could explain why a student can learn effectively or communicate with a familiar teacher or paraprofessional, but not a new one.

Many difficulties shared to varying degrees include:

  • Many  on the spectrum are mono-channel – meaning that they can only process one of their  senses at a time. This means that if they are listening and processing the information through their auditory sense, they cannot ‘see’  or process what they are looking at,  and vice versa.
  • Being overly sensitive to noise is a common feature. A baby or toddler may not respond to voices and other sounds or cover his ears every time there is a sound. Parents or the doctor may think the child is deaf and request hearing assessment. Other challenges include the inability to filter what is being heard so that if a person is speaking to them, they are unable to focus  just on the voice.  They hear all the background noise (ie, the hum of the refrigerator) at the same level as the voice.
  • Lights may be too bright to the point of being painful, especially fluorescent lights.  This effects the  visual processing of  what  they are looking at in that they may not see the whole picture, but pieces – kind of like some of the portraits painted by Picasso. A child may be looking intently at a book cover, but actually only ‘seeing’ the tiny little flower in the grass and not the whole scene of the farmhouse setting.
  • The feel of anything on the skin may be irritating to the point that it feels like sandpaper to some. Clothing and tags and socks and shoes can be unbearable for some; others may be able only to tolerate loose clothing made of really soft cotton. For some, brushing up against another person in the street or school hallways can be excruciating.
  • A heightened sense of smell can be a problem for some. Smelling something unpleasant and strong with no knowledge of what it is or where it is coming from can be very scary.
  • Overactive taste buds or underactive taste buds can create challenges in getting a child to eat. Add to that  the inability to tolerate certain foods because of the sensitivity to texture in their mouths, and you can imagine why many on the spectrum start out as picky eaters.
  • Many children on the spectrum have  challenges  in coordination and motor planning  tasks in one area or another, such as tying their shoes, or playing sports.
  • When there are too many sensory challenges at once, the person can  experience sensory overload, resulting in a behavioral meltdown. For some this may mean running away to escape for others, for others a tantrum, and still other extreme rocking and self- stimulatory behavior.
  • Many see the detail, but have a hard time seeing the whole. First example, they may see the eyes, nose and mouth like a Picasso painting, but not see the whole face.
  • Some may crave spinning and / or rocking,   the vestibular system that has to do with balance.
  • Some adults report that they do not have awareness of where they are in space and need to look constantly at the ground  in front of them to keep their balance even when walking.
  • Adults have described how many of the problems they face such as social relationships to be in large part due to sensory processing.

 

 

Free live Q & A on Tues July 19, 2011: Auditory Processing with Terrie Silverman.

July 5, 2011

Autism College will present a free live Q & A on Tuesday, July 19, 2011 from 6:00 to 8:00pm  PST with visiting professor Terrie Silverman, MS, and with Chantal Sicile-Kira moderating. The topic will be auditory processing and autism, and Auditory Integration Therapy. Sign up below.

Does your child   have difficulty coping with specific sounds; struggle with understanding what he/she hears;or shut down or struggle when there is much background noise? Does he or she hum or talk to himself/herself; have trouble with articulation, sound flat without inflection; or have trouble understanding what you say?   Your child may have auditory processing difficulties.  Tune in to hear what Terrie has to say. You’ll have the opportunity to send in some questions. Sign up below.

Terrie Silverman, M.S. received her master’s degree in speech/language pathology in 1973 from Rutger’s University and was trained in November 1992 as an Auditory Integration Training Practitioner. Ms. Silverman has been working with children, adolescents and adults with autism and developmental disabilities since 1974, in public schools, private schools, state and private residential facilities, group home settings, as a consultant, and with multidisciplinary teams in hospitals, clinics, schools and state programs.

Ms. Silverman and her staff have provided Berard Auditory Integration Training throughout the United States to over 2800 individuals. Ms. Silverman was Director of a Richmond, Virginia nonprofit agency for 12 years, where she created several programs to support families who were raising an individual with a developmental disability. Ms. Silverman was on the Board of Directors and was a member of SAIT, the Society for Auditory Intervention Techniques, and when it developed into a worldwide organization called BAITIS, the Berard Auditory Integration Training International Society, in 2007, Ms. Silverman was elected to the Board of Directors. She is a long time member of the Autism Society of America (ASA) and Developmental Delay Resources (DDR), as well as many other disability organizations. Terrie Silverman is a Berard Certified AIT practitioner. For more information go here.

Asperger’s Syndrome and why some adults may not have been diagnosed

May 26, 2011

This was first published in my “Ask Chantal” column of the Autism File.

Dear Chantal,

I am currently reading your book Adolescents on the Autism Spectrum,… I have a son who is 27 and throughout his entire life he has been different… Recently I have come to believe he is autistic. My girl friend who has a 13 year old autistic son, says she has always wanted to tell me that she feels the same way in the belief that he is of the autism spectrum, possibly Aspergers. He has almost all the symptoms. I am now in the process of trying to get my son into some doctors in Melbourne, FL who are specialists… He has been a struggle to raise with all of his illnesses and challenges. He has been with disabilities since he was 4. We have been seeing the same psychiatrist for 22 years and were going to the same pediatrician for 17 years. …Why has no doctor been unable to suggest this diagnosis? Help me please. I am very interested in knowing if you have any other books out for adolescents and young adults with autism and/or Aspergers?

Jamie in Florida

Dear Jamie,

It wasn’t until 1994 that Asperger Syndrome was added to the DSM IV (Diagnostic and Statistical Manual of Mental Disorders) which is used for establishing diagnoses. It is only in recent years that Asperger’s Syndrome (AS) has become more understood and recognized by professionals and parents. That is why many adults with AS were actually misdiagnosed as children, often with bipolar, schizophrenia, OCD, and so on. You are right to look for a specialist experienced with Aspergers to ascertain if your son falls on the spectrum. Being properly diagnosed is useful for knowing why someone is the way he is and what strategies can be helpful in the areas in which he may have challenges.

My latest book, Autism Life Skills, based on interviews with adults on the spectrum may be helpful to you and your son to find out what many people on the spectrum say has been helpful to them. As well, you and your son may find GRASP a useful resource for more information.

Chantal

 

Autism can create stress in couples, what to do?

May 12, 2011

Parents all over the world feel the stress of having a child with autism. This letter is from a parent in the UK and was first published in The Autism File.

Dear Chantal,

My husband and I are near a divorce, the pressure is immense with our autistic son who is 4 years old. My husband blames me and I blame him, all our arguments I know are from stress, then we drink to numb the pain of helplessness. We need help and I don’t know where to turn to.  I need to talk to someone and I am desperate for my husband to love me again. Autism has simply wrecked our lives, I love my son but I feel I have lost my life and husband now. Please help.

Feeling the Pain

Dear Feeling the Pain,

My heart goes out to you.  You are not alone in your situation, unfortunately many marriages become very stressed when trying to deal with having a child with autism. It sounds as if you and your husband need some time away together from your child, time to enjoy each other’s company, to rediscover what you enjoyed about each other before autism entered your life.  Try to find someone to watch your son on a regular basis (ie once or twice a week) so you and your husband can leave the home and have a date. Individual counseling for you to have someone to speak to, and couples counseling may help you learn how to deal with the new family dynamics. Finding the right therapist is important. Perhaps contacting your local autism society chapter and finding out if there are any recommendations from other parents. Finally, joining an autism  support group could help you feel you are not so alone and you may find other moms you enjoy connecting with. As well, there are many on-line social communities available to connect with to share information and vent. There are more and more dad support groups as well.  My best wishes in re-connecting with your husband, and finding the support you need.

Chantal

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