Proposed ASHA Position Statement: Rapid Prompting Method (RPM)

June 23, 2018

For those interested, the following is my letter in response to the proposed position statement by the ASHA  American Speech-Language-Hearing Ad Hoc Committee on Facilitated Communication (FC) and Rapid Prompting Method (RPM).   The proposed policy can be read here.

 Dear  ASHA Board of Directors:

My name is Chantal Sicile-Kira and I am the author of  five books on autism, an International speaker,  and I am known for my practical advice to parents and educators. Many years ago, I worked for two years at Fairview State Hospital (now called Fairview Developmental Center) and taught  functional and community living skills to the first group of young adults in preparation for de-institutionalized following the passage of the Lanterman Act. I also worked for a short time at Orange County Regional Center as a case manager to families of children with developmental disabilities.

As well, I  have 25 years of experience in non-profit leadership roles related to autism, including two years as Co-Chair, South Counties Autism Regional Taskforce, reporting to the California Legislative Blue Ribbon Commission on Autism, and two years as Member, Taskforce on Transitional Services & Supports reporting to the California Legislative Blue Ribbon Commission on Autism. I am also the parent of Jeremy, a 29 year old who learned academics and  communication skills using RPM (The Rapid Prompting Method), and continues to do so as a fully-included productive individual with a number of trained communication partners.

I respectfully encourage ASHA to withdraw the proposed position statement in regards to RPM.   I am very concerned that The Ad Hoc Committee has refused to consider input or evidence from  users and ASHA members with experience in these methodologies. Such important policy decisions should involve a careful unbiased examination of different viewpoints.  I believe that more research is indeed needed. I also believe that a  professional or parent trained in the methodology is capable of making a decision on whether or not a method is worth trying with a certain  individual, and then verifying success or not on a case by case situation.

I share my experience below with my son’s permission. We hope this will enlighten you as to how for certain individuals, RPM can be an effective method of academic and communication skills.

While doing research on educational methodologies and medical interventions  to write my books, I read about the evidence- based practices that were considered effective. I also learned  about educational methodologies and medical interventions  that did not yet have research evidence, because no research had yet been done. However, some of these interventions were effective with some individuals.  As a parent and autism professional, I believe that there are practices that can be tried and validated on an individual basis. RPM is one of those.

I first heard of RPM when doing the research to write one of my books, Autism Spectrum Disorders (2004 Penguin, Autism Society of America, Book of the Year 2004; Revised-edition 2014 Penguin).  I decided to try it with my son, as it made sense for him and his challenges. Jeremy received direct instruction from Soma Mukhopadhyay (at the time living in LA) twice a month, and I practiced with him every day for half an hour. We did this for approximately two years.

When Jeremy was born he was hypotonic. He needed physical therapy to learn to sit straight, and to use his arms and legs. Every time he learned a new skill (ie eating with a spoon or fork) he needed hand over hand prompting. He had speech therapy as a toddler,  but it was not effective (again, muscle tone challenges).  When he was 5-6 years old he had a supervised home-based ABA Lovaas program. I did ten of the 40 hours of ABA therapy a week  myself, which meant I learned about how Jeremy learned – or didn’t learn.

Jeremy learned to identify and correctly label verbally over 100 pictures. However, if you put the pictures in front of him, he could not give you the correct picture requested at a 80-100% success rate. Since he could verbally identify the objects introduced to him one by one, we knew he had receptive language.  When he was 7 PECS was tried both at home and school. He communicated using a sentence for first time using the “I want… “ sentence strip plus icons in a binder (iPads did not exist till he was out of high school). He had a difficult time choosing the icon out of the binder books and putting it on the strip (vision processing and motor challenges). He never progressed past the “I want”  sentence. Professionals over the years described Jeremy as having challenges similar to a person with CP. He continues to have sensori-motor challenges and visual processing challenges, although these have improved over the years with exercise and therapy.

Therefore, when I heard about RPM, it sounded like something that was worth trying with Jeremy. Success was slow, but obvious. It was not a “magic pill” and it did not cure his autism – but that was not my goal. My goal was effective communication  with a variety of communication partners for use in daily life and with living skills, and to allow him to make choices and decisions,  to blossom as an individual, and have a productive life as an adult.

When Jeremy was in high school he began using RPM at school with a variety of communication partners  trained and supervised by a Speech and Language Pathologist trained in FC who understood the strategy of RPM.

Jeremy graduated from high school at age 21 with a full academic diploma. He auditioned for, and was chosen to give a commencement speech at graduation. During his high school years he was able to participate in general education classes, as well as a class in journalism. In his English classes  and  his journalism class, Jeremy learned effective writing skills and his love of writing to share his thoughts and opinions. He was asked to write a monthly column for the school newspaper.

More importantly,  Jeremy was able to communicate appropriately and effectively when he was sick or in pain. He was able to make choices and life impacting -decisions  and  tell us what he was feeling.   Thanks to learning communication skills via RPM, Jeremy  now has a full  and productive life, fully – included in his community. For more details in regards to his accomplishments since high school, please read his  attached resume. (For those reading this blog post, some of Jeremy’s accomplishments are listed on his website).

Without having a way to communicate, Jeremy would never have been able to tell us about his gift of synesthesia, and we would not have been able to encourage him to follow this path as a career. As you know, the unemployment rate for autistic adults is very high. We are grateful that we found out he has a gift that can help him be productive.

If ASHA’s mission is  “Making effective communication, a human right, accessible and achievable for all,” then why  are some in  ASHA suggesting withdrawing a system of communication that is obviously effective for some people? Clearly more research is needed. But if finalized, the proposed statements would severely restrict ASHA members’ discretion and ability to exercise professional judgment. It would also and would make ASHA’s assertions about wanting to respect “client preferences and values” untrue.

I hope that ASHA does the right thing and upholds the human rights of all, including those who communicate in the manner that my son does.

Sincerely and respectfully,

Chantal Sicile-Kira

 

Jeremy’s Point of View: Person Centered Planning and Self-Advocacy

September 29, 2013
Jeremy's Team and Friends

Jeremy’s Team and Friends

Guest Blogger: This is a blogpost written recently by my son Jeremy Sicile-Kira for the Autistic Global Initiative. The Autistic Global Initiative recently developed an online training course to train support staff : the  AGI Residential / Daily Living Support Course.  We all know how important training is, this is a wonderful resource!

From Jeremy:

Person centered planning PCP   means that the person who needs supports is at the center of any planning about his or her life. Justly the person must be able to give his opinion even if it is just to point to “yes” or “no”. This PCP is important to having a real life. Self advocacy means being able to really advocate for what you want in life and be ready to let people know what your wants and needs are.

When you need support staff for daily life, it is necessary to kindly be able to make them know what is important to you and to your life. For example the following is important for my support staff to know:

I want friends. Justly I really have a hard time making friends. I nicely need to type  out everything I want to say or point to letters which can take a while. Justly I  need support staff  to help me find places and situations to meet new people and  who can help me to make and have friends. Support staff  have to help me talk to people using my voice output technology.  It is greatly important for staff to support me in writing answers and communicating with others, and not to answer for me. Helping me do that is nice but also necessary for me to have relationships with others besides my support staff.

I need to be given opportunity to use my voice output technology on my iPad. I get less opportunity to interact with people now that I’m not in school. Just using my iPad when ever possible  gives me a voice. Support staff  are nice to give me the opportunity to order in restaurants with my  iPad and not just my letter board. Nicely the voice output app on my iPad is  my preferred communication method  while outside of my house.

Nicely staff need to have an understanding of my real life  goals.  Having support staff who are justly aware of my short term and long term goals is important. Just having everyone on the same page nicely makes a team run smoothly. I think having team meetings really helps remind everyone on the team of my goals. Having short term goals followed through on is a big deal and very important to me. It truly makes me happy just finishing something I put my great mind to. Frankly it also makes me happy knowing that my great team is following through on what is decided is important to my daily life. Nicely every team member should have seen my Individual Support Plan  ISP when they start working with me and we should all go over it frankly at  every team meeting.

Justly having the opportunity to give my input helps me have better days. For example, nicely every morning when the schedule for the day is made I have the opportunity to say what I want to do that day and in what order. Greatly it is just a good way to start the day. Greatly routine is important but so is having fun.

Greatly support staff need to be trained on how to be a communication partner,  and in inclusion.  Justly they need to know how to help me in group situations. It is not easy when you need a device to communicate and staff must feel comfortable in redirecting interactions to me. Also they need to know how to help others feel comfortable in communicating with me.

Person Centered  Planning and Self advocacy are important  to include in every day life for someone like me. Truly my life has meaning because of these two concepts. Greatly I hope all people are given the opportunity to learn them.

 

Praise for A Full Life with Autism

May 20, 2012

Lars Perner, Ph.D., Chair, Panel of People on the Spectrum of Autism Advisors for the Autism Society of America, and Assistant Professor of Clinical Marketing, USC, had this to say about A Full Life with Autism:

Each individual on the spectrum is unique and will need personally tailored supports.  At the same time, because of autism’s complexities and seemingly contradictory characteristics, it is often difficult to get a view of the “big picture” of a life on the spectrum and the challenges that it presents.  In their very comprehensive—yet highly readable—book, Chantal and Jeremy succeed in addressing both of these concerns.

Although ample resources for addressing the diverse needs of individuals on the spectrum are presented, the case Jeremy illustrates the types of challenges, surprises, and opportunities  that may come up as an individual develops.  Chantal talks about initially not expecting Jeremy even to finish high school and subsequently being able to help him not just graduate but go on to college.  An especially intriguing issue discussed involved helping Jeremy understand that a girlfriend is not something that can just be “hired” in the way that one can secure aides and support workers—an issue that only the most clairvoyant parent might have anticipated. Although optimistic and filled with humor, the book clearly acknowledges challenges that this family faced and those that will likely be faced by others—including obstacles to finding long term housing opportunities and healing from traumatic events.

Although much of the writing is done by Chantal, Jeremy is a consistent, creative, and innovative contributor, talking candidly about his own experiences that have led to the lists of tips that he presents.  I especially love his observation that rights of disabled individuals “are founded on the Fourteenth Amendment of the Constitution.”  The book’s extensive list of issues that may come up will unquestionable leave many families much better prepared for handling the challenges that will come up over the years.

More Rave Reviews: A Full Life with Autism

May 13, 2012

Elaine Hall,  creator of the Miracle Project, author of Now I See the Moon, co-author of Seven Keys to Unlock Autism and  subject of the movie “AUTISM: The Musical” has this to say about A Full Life with Autism:

A Full Life with Autism provides parents of teens on the autistic spectrum understanding, guidance, hope, and resources to navigate the uncharted territory of adult living.  Thank you, Chantal and Jeremy Sicile-Kira for responding to questions that so many of us parents are aching to know.  Thank you for brilliantly weaving  the parent perspective with Jeremy’s internal dialogue.  Thank you, Jeremy  for bravely articulating what is really going on inside the mind/body of someone with autism. I will use your words as starting points in my discussions with my own son, Neal.

A Full Life with Autism reminds us that the true “experts” on autism are our children; and that we, the adults, must listen to their wants and desires, then find the resources to help them realize their dreams.  I will be recommending this book to everyone I know.

 

 

A Full Life with Autism: Comments by Dr. Cathy Pratt

May 9, 2012

Unfortunately, many adults on the autism experience high rates of unemployment or underemployment.  Some of our most gifted live in poverty and have few options in life.   Chantal and Jeremy have creatively worked to create an engaged life for Jeremy and his family.   This book provides very practical ideas for transition planning and provides a template that others can use as they support adults moving into adulthood.   I highly recommend this for any family or individual as they  prepare for transition planning.

 

Dr. Cathy Pratt, BCBA-D, Director- Indiana Resource Center for Autism, Indiana Institute on Disability and Community; Former President of the Autism Society of America

Review of A Full Life with Autism by Dr. Joshua Feder

May 5, 2012

This marvelous book lays out in plain and readable language the challenges of transition to adulthood for persons with autism and offers practical advice from the inside perspective of a mom and her adult son teamed as partners in the enterprise of helping him achieve a meaningful life.

It is inspirational, almost a parable, in its effect of drawing you into their story and teaching important principles, and yet it is also comprehensive in the executive task of helping us think about our values, goals and objectives in our mission to give a real life to our adults with autism and related challenges.

Perhaps one of the most important messages: behavior is a form of communication, and it is incumbent on the people around the person with autism to work to understand what that behavior is communicating without merely consigning it to a category of something to be gotten rid of.  Jeremy states: “I have oftentimes been the victim of ignorance.”  We must not be party to what Jeremy has suffered.  We need to be humble and helpful, persistently curious and ever respectful.  We cannot presume to know what we do not.  We must take the time to get to know the hopes and dreams of people whom we do not yet understand.

I was also intrigued by the undercurrent discussion of relationships that runs through the book in sections on friendship, sex, love, and support staff, as they all revolve around the quality and character of relationships.  How can we support, for the person and people around him, the development of more meaningful communication, relating, and problem-solving.  To the many thoughts already included I would add that it is often very helpful to support the person and caregivers by carving out regular reflective time to think through how things are going  – what is working, what isn’t, and what to do to try next to understand the situation better and try something different.

In all, this is a compelling, thoughtful, comprehensive and inspiring bible that belongs on the shelf of everyone who strives to help people with autism build a life in a complex world.

Joshua Feder MD, Director of Research of the Interdisciplinary Council on Developmental and Learning Disorders

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.

 

 

 

The Difficulties of Communicating

September 10, 2011

This post is written by our second guest blogger, Jeremy Sicile-Kira.  Jeremy wrote this for his college newspaper, the Chariot,  and it was  published in August 2011. You can read more of Jeremy’s writing on his new website (soon to be expanded) or follow him on twitter at @Jeremyisms.

Having autism has deterred me from communicating with neurotypicals. Neurotypicals are people not like me; people who have what are considered normal behaviors. Their sensory processing is functional  so they can see, hear and feel normally.  Because I have sensory processing challenges, I can’t feel or see the physical space I am in.  I can’t see and hear at the same time so I don’t look at people when I am listening to them. People may assume because of this that  I am not listening or not interested, but that is not the case. As well, I can get  overwhelmed in noisy environments because of  my sensitive  auditory processing challenges. For me calling a person on the phone is no  easy matter because  the ability to talk is not a strong  ability I have. This is due to motor challenges. It takes great muscle control to speak. While  autism affects my ability to speak it has not hindered my ability to think.

Being  nonverbal has it’s advantages. For example people will stop talking if you don’t respond which is great when you don’t feel like listening. At least I have a good excuse. Kidding aside, I have great technology and support staff to help me communicate. But by the time my poor finger has typed a response, often the conversation in a group setting has moved on.

Sometimes I dread being in public places. While many people are understanding, some  frankly act weird. Like those that treat me like a train wreck: they dreadfully watch but are frankly happy it’s not happening to them, this life of having a disability. Getting a lot of attention can be awesome for the autistic community in general, but sadly if you ask autism advocates most  will tell you that not all press is good press. The  reality  is that most of us  would rather be unnoticeable than be noticed just for our autism.

Although I have challenges that make it difficult to communicate, I am very interested in getting to know my fellow students. Bravely feel free to talk to me when you see me. Just be patient while waiting for a response.

My son with autism quotes TV dialogue, what do I do?

May 10, 2011

For a while, I wrote an “Ask Chantal” column for The Autism File magazine

  So many people enjoyed reading the column that I have taken the liberty of reproducing some of the more popular letters I received and the corresponding advice I gave

If it doesn’t help you, maybe you know someone it can help

Dear Chantal,

My son mumbles and talks to himself all the time

He seems to go into his own world, I cannot get him out

He seems to be quoting parts of films or things he sees on the computer/game boy

Do you have any suggestions how I can direct the speech to a conversation with me? He obviously is verbal but I can’t interact with him

Perplexed

Dear Perplexed,

You don’t mention how old your son is, but the fact that he is quoting dialogue from films or video games is a good sign in terms of his verbal abilities

He may be repeating them because he likes the sound, or he is understanding those words and phrases form listening to them over and over

  Pay attention to whether or not he is repeating bits of dialogue at appropriate times, which would show that he is understanding the meaning or intent

For example, my son used to repeat certain lines form Sesame Street that had to do with eating  cookies when that is what he wanted to eat

When he slips on the stairs, he says “Whoops! Sorry!” in the same voice  he has heard in a favorite video

This is a good sign

  I would suggest you  get him interested in communicating with you by getting to know the movies and games he is quoting from,  and then dialogue and connect with him by repeating them as well

He will be more interested in you if you take an interest in what he is into

You can repeat the bits of dialogue at appropriate moments

Then, use the characters from the movies and write social stories about what they would do in certain real life situations, getting him to help more and more, gradually getting him into talking about the here and now and not so much the pretend world

  Using his interest to connect with him and to teach him how to connect with others is an important first step

Chantal

Autism Life Skills

July 20, 2010

Teacher: “What are your greatest dreams about your future?”

Jeremy: “I want to have my own house with roommates, good friends,

a fun job and be learning.”

Teacher: “What are your greatest fears about your future?”

Jeremy: “That I will not have enough money.”

Teacher: “What barriers might get in the way of accomplishing your goals?”

Jeremy: “You know I need good helpers. I need people that respect my intelligence.”

-Interview with Jeremy Sicile-Kira

Transition Year 2007-08

With two teenagers who will soon be out of school, there has been much reflection and soul searching taking place in my home lately as to whether or not we’ve made the right decisions as parents over the years. Rebecca, our  neurotypical teenager, has just started driving and is becoming more independent. In hindsight, there is not much I would do differently if we had to start raising her all over again.

My thoughts concerning Jeremy, our 19-year-old son with autism, are somewhat  different. Those who have seen him on the MTV True Life segment “I Have Autism” will remember his can-do spirit and his determination to connect with other people, but also how challenged he is by his autism. Obviously, there are many more options available to help people like Jeremy today than when he was a baby. Over the last few years, as we considered how to best prepare Jeremy for the adult life he envisioned, I wondered what we could have or should have done differently when he was younger.

This led me to think: What would today’s adults on the autism spectrum point to as the most  important factors in their lives while they were growing up? What has made the most impact on their lives as adults in terms of how they were treated and what they were taught as children? What advice did they have to offer on how we could help the children of today? I decided to find out. I interviewed a wide-range of people—some considered by neurotypical standards as “less able,” “more able” and in-between; some who had been diagnosed as children; and some diagnosed as adults.

The result of these conversations and e-mails became the basis of my latest book, Autism Life Skills: From Communication and Safety to Self-Esteem and More—10 Essential Abilities Your Child Needs and Deserves to Learn (Penguin, October 2008). Although some areas discussed seemed obvious on the surface, many conversations gave me the “why” as to the challenges they faced, which led to discussions about what was and was not helpful to them. No matter the differences in their perceived ability levels, the following 10 skill areas were important to all.

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 that impacted every aspect of their lives: relationships, communication, self-awareness, safety and so on. Babies and toddlers learn about the world around them through their senses. 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 impede learning in the classroom. Yet, for many, sensory processing difficulties are a lot more complicated and far reaching. For example, Brian King, a licensed clinical social worker who has Asperger’s, explains 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.

Donna Williams, Ph.D., bestselling author and self-described “Artie Autie,” 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 it means her stomach hurts because she is hungry or if her bladder is full. Other adults mention that they share the same problem, especially when experiencing sensory overload in crowded, noisy areas. Setting their cell phones to ring every two hours to  prompt them to use the restroom helps them to avoid embarrassing situations.

Many adults found it difficult to tolerate social situations. Some adults discussed how meeting a new person could be overwhelming—a different voice, a different smell and a different visual stimulus—meaning that difficulties with social relationships were not due simply to communication, but encompassed 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.

The most helpful strategy was knowing in advance where they were going, who they were going to see and what was going to happen, so that they could anticipate and prepare themselves for the sensory aspects of their day. Other strategies included changing their diet, wearing special lenses, having a sensory diet (activities done on a regular basis to keep from experiencing sensory overload), undergoing auditory and vision therapy, as well as desensitization techniques.

Communication

The ability to communicate was the second most important area of need cited by adults. All people need a form of communication to express their needs, in order to have them met. If a child does not have an appropriate communication system, he or she will learn to communicate through behavior (screaming or throwing a tantrum in order to express pain or frustration), which may not be appropriate, but can be effective. Sue Rubin, writer and star of the documentary “Autism is a World,” is a non-verbal autistic college student and disability advocate. She often speaks about the impact of communication on behavior. She shares that as she learned to type she was able to explain to others what was causing her behaviors and to get help in those areas. In high school, typing allowed her to write her own social stories and develop her own behavior plans. As her communication skills increased, her inappropriate behaviors decreased.

Those with Asperger’s and others on the more functionally able end of the spectrum may have more subtle communication challenges, but these are just as important for surviving in a neurotypical world. Many tend to have trouble reading body language and understanding implied meanings and metaphors, which can lead to frustration and misunderstanding. Michael Crouch, the college postmaster at the Crown College of the Bible in Tennessee, credits girls with helping him develop good communication skills. Some of his areas of difficulty were speaking too fast or too low, stuttering and poor eye contact. When he was a teenager, five girls at his church encouraged him to join the choir and this experience helped him overcome some of his difficulties. Having a group of non-autistic peers who shared his interests and provided opportunities for modeling and practicing good communication skills helped Michael become the accomplished speaker he is today.

Safety

Many on the spectrum had strong feelings about the issue of safety. Many remember not having a notion of safety when little, and putting themselves in unsafe situations due to sensory processing challenges. These challenges prevented them from feeling when something was too hot or too cold, if an object was very sharp or from “seeing” that it was too far to jump from the top of a jungle gym to the ground below.

Many adults described feeling terrified during their student years, and shared the fervent hope that with all the resources and knowledge we now have today’s students would not suffer as they had.  Practically all recounted instances of being bullied. Some said they had been sexually or physically abused, though some did not even realize it at the time. Others described how their teacher’s behaviors contributed directly or indirectly to being bullied. For example, Michael John Carley, Executive Director of GRASP and author of Asperger’s From the Inside Out, recalls how his teachers made jokes directed at him during class, which encouraged peer disrespect and led to verbal bullying outside the classroom.

A school environment that strictly enforced a no-tolerance bullying policy would have been extremely helpful, according to these adults. Sensitizing other students as to what autism is, teaching the child on the spectrum about abusive behavior, and  providing him/her with a safe place and safe person to go to at school would have helped as well. Teaching them the “hidden curriculum,” so they could have understood what everyone else picked up by osmosis would have given them a greater understanding of the social world and made them less easy prey.

Self-Esteem

Confidence in one’s abilities is a necessary precursor to a happy adult life. It is clear that those who appear self-confident and have good self-esteem tend to have had a few things in common while growing up. The most important factor was parents or caretakers who were accepting of their child, yet expected them to reach their potential and sought out ways to help them. Kamran Nazeer, author of Send in the Idiots: Stories from the Other Side of Autism, explains that having a relationship with an adult who was more neutral and not as emotionally involved as a parent is important as well. Parents naturally display a sense of expectations, while a teacher, mentor or a therapist can be supportive of a child and accepting of his/her behavioral and social challenges. Relationships with non-autistic peers, as well as autistic peers who share the same challenges were also important to developing confidence.

Pursuing Interests

This is an area that many people on the spectrum are passionate about. For many, activities are purpose driven or interest driven, and the notion of doing something just because it feels good, passes the time of day or makes you happy is not an obvious one. Zosia Zaks, author of Life and Love: Positive Strategies for Autistic Adults, told me that, as a child, she had no idea that she was supposed to be “having fun”—that there were activities that people participated in just for fun. It was one of those things about neurotypical living that no one ever explained to her.

As students, some of these adults were discouraged from following their obsessive  (positive translation: passionate) interest. Others were encouraged by parents and teachers who understood the value of using their interest to help them learn or develop a job skill. For example, when he was little, author and advocate Stephen Shore used to take apart and put together his timepieces. Years later, this interest was translated into paid work repairing bicycles at a bike store.

Self-Regulation

Respondents believed this is a necessary skill for taking part in community life. Many children on the spectrum suffer from sensory overload. It can also be difficult for them to understand what they are feeling and how to control their emotional response. Dena Gassner, MSW, who was diagnosed as an adult, believes it is necessary for children to be able to identify their “triggers” and that parents and educators should affirm to the child that whatever he or she is feeling is important. Even if it does not make sense to the adult, whatever the child is feeling is true for him or her. Various methods can be used to help them become more self-aware over time, to recognize when they are approaching sensory or emotional overload and to communicate the need for a break. As they get older, giving them more responsibility for scheduling their own breaks and choosing their own appropriate coping strategy can be very empowering.

Independence

Independence is an important goal, but may take longer than expected. Zosia Zaks told me that parents of children with autism need to realize and accept that they will be parenting for a lot longer than parents of neurotypical children. She has a point, but I never thought I’d still be discussing certain self-care issues when my son was old enough to vote. For many that I interviewed, some skill acquisition came later in life, and many are still improving themselves and their essential skills. This is nice to know because so often, as parents and educators, we hear about the “windows of opportunity” in terms of age and can become discouraged by our own inner cynics and other well-meaning doubters (“If they haven’t learned by now….”).

When discussing self-sufficiency, many stated that the two greatest challenges were executive functioning  (being able to get and stay organized) and sensory processing. Doing chores and establishing routines helped some as children to learn organizational skills and responsibility—two essential foundations for self-sufficiency.

Social Relationships

Relationships are important to all human beings, but are difficult for many on the spectrum. The adults I communicated with make it clear they enjoy having relationships, including those who are mostly non-verbal, such as Sue Rubin and D.J. Savarese (who wrote the last chapter of Reasonable People). However, understanding the concept of different types of relationships and knowing the appropriate behaviors and conversations expected does not come naturally, and can be magnified for those who are non-verbal.

Many adults, such as Dena Gassner and Zosia Zaks, discussed the importance of teaching children interdependence skills—how to ask for help, how to approach a store clerk, how to network as they get older. For them, interdependence did not come as easily as it does for neurotypicals. Yet, asking people for assistance—what aisle the cookies are located in, the name of a plumber when your sink is stopped up, letting people know you are looking for a job or apartment—is how social and community life functions.

Self-Advocacy

Effective self-advocacy entails a certain amount of disclosure. All of the adults I spoke with believed that children should be told about their diagnosis in a positive manner. Michael John Carley, who was diagnosed following the diagnosis of his son, says he always felt different than others. Getting a diagnosis was liberating because then he knew why he felt different. On the topic of disclosure to others, some believe in full disclosure to all, while others choose to disclose only the area of difficulty.

Like many her age, Kassiane Alexandra Sibley, who wrote a chapter of the book Ask and Tell,  was improperly diagnosed before discovering at age 18 that she had an autism spectrum disorder. She had to learn self-advocacy skills the hard way. Like many I spoke with, Kassiane believes that teaching children when they are young to speak up for themselves is the most important gift we can give them.

Earning a Living

This is an issue of major concern for many on the spectrum. Some of the adults I spoke with struggled for years before finding an area in which they could work. The life skills discussed earlier in this article impact tremendously on a person’s ability to find, get and keep a job. Many people on the spectrum continue to be unemployed or underemployed, which means we need to rethink our approach in how we are transitioning our youth from being students to being contributing members of society.

Temple Grandin, who co-authored the book Developing Talents, says that parents should help their children develop their natural talents and that young people need mentors to give them guidance and valuable experience. Authors John Elder Robinson (Look Me in the Eye) and Daniel Tammet (Born on a Blue Day) both credit their Asperger’s for giving them the talents on which they have based their successful businesses. For those whose talents are less obvious, a look at the community they live in and the service needs that exist there can be an option for creating an opportunity to earn money.  My son Jeremy and his teacher created a sandwich-delivery business and a flower business on his high school campus as part of his work experience. Customized employment, including self-employment, is an option that, with careful planning and implementation, can be a solution for some.

In retrospect, there are different choices I could have made  in raising and educating Jeremy these past 19 years. However, after conversations and e-mails with many  different adults on the spectrum, I have concluded that there is one factor I would not have changed, the formula I used for providing a solid foundation for both of my children: Take equal parts love, acceptance and expectation, and mix well.

This first appeared in the Advocate Magazine in 2008, published by the National  Autism Society of America

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