Love, Sex, God, & Autism

October 4, 2015

LSGA1 Love Sex logo April Mitchell final web

For years, people have asked me, “How did Jeremy Sicile-Kira  become the person and painter he is today? What is your  your story? How did Jeremy’s Vision  come about?”  Well, here it is! I’ve created –  a 70-minute multimedia storytelling event appropriate for Keynotes, Fundraisers and Special Events.  This keynote can be adapted to your events needs: it can be accompanied by workshops with learning objectives, or  shortened for end-of-year-dinners and fundraisers. “Incredible … powerful… inspirational…” are comments offered by those who saw the premiere in San Diego this past July.

Love, Sex, God & Autism, is  a universal and inspirational story about resiliency and adapting to change. In my 70-minute storytelling event, I humorously and lovingly wrestle with the trials and tribulations of my family’s successful attempt to change the prognosis given to my child – life in an institution.  It’s the hysterical and heartbreaking personal account of a young man’s quest for love, and a family’s search for normalcy – or at least inclusion!  Along the way,  I explore how my upbringing  provided me with the grit and  resiliency  I would need as Jeremy’s mother. Life-changing gifts are discovered, affirming our family’s belief that being “not like the others” means being different, but not less.

For more information, or to book this presentation, please contact us at Autism College.

Academic Supports for College Students with an Autism Spectrum Disorder: An Overview

June 4, 2015

Here’s an article  contributed  a few years ago by Marci Wheeler, MSW From Indiana Institute on Disability and Community. The information is still pertinent today.

Academic Supports for College Students with An Autism Spectrum Disorder:  Quick Overview

Each year more information about the college experiences of those on the autism spectrum is written by their parents, professionals and these students on the autism spectrum. “Temple Grandin” a biopic movie of Temple’s life premiered last year on HBO, and won several Emmy and other awards. Included in the film, of this very accomplished woman with autism, is a significant look at Temple’s experience at college. This film also reminds us that fellow college students need information to better understand their peers on the autism spectrum and how to include and support them. There is much more to college life than academics. Intellectually these students are often very bright but many may face a variety of “hidden challenges” that can undermine their ability to navigate a typical college campus and perform well in class. This article will discuss some of the challenges and possible academic supports for students on the autism spectrum.

There is a wide range of functioning and abilities seen across individuals diagnosed with an autism spectrum disorder. Generalities are hard to make except to say that communication and social skills deficits are present. There are also neurological differences that affect everyone on the autism spectrum. However, each person is affected in different ways. The sensory perceptions, motor skills, learning styles and coping strategies are often affected and may cause “hidden” challenges that are not understood by those supporting these students. As a result of these challenges the observable behaviors of students on the autism spectrum may make them appear inattentive, bored, rude, defiant or possibly even on drugs. Ritualistic or repetitive behaviors, an attachment to incongruous objects and additional unusual communication and social skills (especially under stress) can make some of these students seem odd and bring unwanted attention to them.

Some students on the autism spectrum may experience sensory overload and/or be distressed by the social and communication demands of a class. They may have learned “acceptable” strategies to cope and have the ability to stay focused on their intellectual pursuits such that they can navigate through their classes (at least the classes in their chosen major) and pass as “normal”. Some students expend a lot of energy, at all costs, to blend in and not be detected. Unfortunately, for some, this may result in them leaving the university without finishing a degree as the stress is too great. Also, on any college campus be assured that there are students who have not been formally diagnosed or students that are not diagnosed until their college years.

Professors and other instructors need to be aware of possible supports that a student on the autism spectrum might find necessary to participate in class and complete classwork. The following six sections briefly state a common concern for most students and list some possible issues and accommodations. Each student on the autism spectrum has unique needs and should work closely with instructors and other college staff to design an individualized plan of proactive support and response to challenges if they arise.

Communication Skills
By definition (following diagnostic criteria) all students with an autism spectrum disorder have some problems which may interfere with receptive or expressive communication. Some of these differences are very subtle and can lead to misunderstandings that are misinterpreted as volitional acts on the part of the student. Students with an autism spectrum disorder may be very articulate and have a large vocabulary which may “hide” their communication challenges. Those supporting students on the autism spectrum should become aware of each individual students weaknesses in this area. Some of these are listed below along with possible accommodations.

Receptive difficulties often experienced by students on the autism spectrum include processing verbal exchanges more slowly, misunderstanding sarcasm, idioms and jokes, very literal interpretation of words, and misunderstanding gestures and body language.

The expressive difficulties of individuals on the autism spectrum may include problems initiating communication; even for those students who at first glance may seem very articulate and even very talkative. Those on the autism spectrum may have trouble staying on topic, turn taking and following conversational “protocol”. Some may be slower to organize thoughts and speak, and/or their voice tone and volume may be unusual. Idiosyncratic use of words and phrases may be present.

Accommodations for a college student with an autism spectrum disorder might include providing the instructor’s lecture notes or a note taker to help key in on important information, providing study guides for tests, allowing a longer verbal response time from the student and allowing for important exchanges of information to be done in written form. It would also help for instructors to be clear, concise, concrete and logical when communicating as well as asking for clarification; don’t make assumptions about what students truly understand.

Social Skills
Social skills might not seem important in a class setting, but, in fact social difficulties can and do impact the classwork of many students on the autism spectrum. Many college courses require class participation and group work as part of earning a grade. Just going to class with peers necessitates the use of social skills. Some social difficulties and possible accommodations are discussed below.

The social challenges for a student on the autism spectrum include problems understanding others perspectives, sharing space and making eye contact. Many high functioning individuals with an autism spectrum disorder have extreme social anxiety and have difficulty negotiating with others, and interacting and working in pairs or groups. These students likely will not understand the “unwritten” classroom etiquette and will often misinterpret facial expressions and other non-verbal cues. Possible accommodations for students on the autism spectrum include allowing for short breaks to leave class and/or allowing the student to have a “social buffering” object which might include a computer, book or other object that initially might seem distracting or “out of place”. Honoring the student’s chosen level of eye contact w/o judgment can be helpful. If there is group work assigned for class the instructor might assist in the formation and monitoring of pairs or groups of students to assure the proper inclusion of the student with an autism spectrum diagnosis. Also providing written rules for asking questions and other classroom logistics (as needed) may support students with an autism spectrum disorder diagnosis.

Sensory Differences
Though currently sensory issues are not part of the diagnostic criteria for an autism spectrum disorder, sensory processing issues seem to affect the majority of these individuals. Some on the autism spectrum have an extreme over sensitivity or under sensitivity to input, from the environment to the five senses: sight, hearing, touch, smell and taste. A significant number of persons experience synesthesia. Synesthesia may affect any of the senses. Synesthesia is phenomena in which the actual information of one sense is accompanied by a perception in another sense. Listed below are some common sensory differences and accommodations that may be important in a class setting.

Common visual and auditory sensory difficulties experienced by students on the autism spectrum include florescent lights that may appear to flicker and certain “bright” colors that may produce “overload”. Someone may see better from a “different” angle or may hear low level frequency sounds emitted by florescent lights. Also certain “typical” classroom sounds may be perceived as “painful” such as the movement and use of desks, people and other objects in the room. Often a person on the autism spectrum may not filter out extraneous sounds and/or may hear sounds in the next room.

Sensory issues related to the sense of touch and/or the sense of smell may occur. For example, certain textures may be “painful” and/or individuals may crave certain textures. Students on the autism spectrum may be disturbed by people accidentally bumping them or the feel of a particular desk or chair. They may wear “unusual” clothing, footwear or accessories because of sensory differences. Also students may be sensitive to certain odors and certain smells may cause “overload”. Some who are very sensitive may be affected by scents from certain perfumes, deodorants and soaps.

Possible accommodations to support a student with sensory differences include allowing hats, sunglasses and tinted lens glasses to be worn and allowing ear plugs or ear phones. Also allowing the student to choose their seat and helping to assure it is always available may be important. If requested by the student, an alternative writing instrument for tests and assignments and/or a computer for in class work, tests and assignments might also be an appropriate accommodation.

A student with an autism spectrum diagnosis may find that a small sensory item brings comfort in class. It is likely, if a student uses a sensory item, that it is inconspicuous but this may not always be the case. Be aware that a student may make a last minute request for a seating change and/or to leave abruptly due to sensory overload. Help devise an acceptable plan to address urgent sensory issues for the student.

Motor Skills
Both fine and gross motor skills may be affected in individuals with an autism spectrum disorder. In addition motor planning and poor awareness of body in space are two areas that often affect motor skills for these individuals. Often fine and gross motor skills as well as motor planning skills are very uneven. Listed below are possible problems in these areas along with possible accommodations.

Fine motor challenges for students on the autism spectrum might affect writing, drawing, turning pages, using utensils, playing an instrument, using locks and keys, and manipulating small objects. Gross motor challenges may affect walking (may have “odd” gait), running, sitting and balancing. Motor planning and the awareness of the placement of their body in space can affect the ways in which an individual moves their body and is able to navigate themselves to accomplish all motor tasks.

Possible accommodations for students on the autism spectrum with motor skills difficulties include allowing a computer for in class work, tests and assignments, providing a note taker, allowing work assignments done at a slower pace, providing models and step by step instruction, providing extra time to take tests and providing readers and scribes (or technology that reads and takes notes). Further accommodations might need to be considered for students taking physical education courses in which motor skills differences might provide further complications.

Learning Style
Students with an autism spectrum disorder often have a very uneven learning profile. They often excel creatively in a non-conventional way. Students on the autism spectrum tend to have excellent long term and rote memory abilities. Executive functioning deficits cause these students many problems. Many are thought to be right-brained thinkers. Most need to like and trust an instructor before they can perform in a class. Some common learning challenges, strengths and possible accommodations are listed below.

Executive function challenges experienced by students with an autism spectrum diagnosis include general organization and planning skills, problems with impulsivity and problem solving and the ability to monitor themselves in the completion of a goal.

Along with the executive functioning deficits, common learning barriers include poor sequential learning, easily bored with repetition once something is learned, attention problems, literal thinking, nebulous sense of time and as mentioned previously, perspective taking deficits. Other issues that impacts learning for students on the autism spectrum are the fact that they need to understand why something is important, relevant or meaningful to them and they may not realize they are having academic difficulty until it may be too late or too difficult for them to rectify on their own.

The strengths of students on the autism spectrum can sometimes help them compensate for their weaknesses. These students can do quite well academically, especially in their chosen field, and their strengths should be respected and used whenever possible. For example these students may have extremely good visual and visual-spatial skills. They often learn best from whole to part (complex to simple) and they can be very creative; out of the box thinkers. These students can also show an amazing knowledge on topics of interest which is most often their major field of study at the university.

Possible accommodations for students on the autism spectrum to support their learning style include providing review sheets, work checklists, and “sub” deadlines and/or intermittent “check-ins.” If possible provide hands on learning, models, demonstrations and other visuals. If possible, pair with peer mentors who might help with feedback and provide “proof-read” opportunities and ongoing structure to keeping on target with work assignments.

Instructors can help support students on the autism spectrum by providing reinforcement at every opportunity. Other accommodations that might be helpful for some students are allowing advanced negotiation of deadlines, extra time for tests, and/or a separate “quiet” place for tests.

Instructors and other college staff can also encourage the use of calendars (computer, traditional, phone w/alarms). Most likely the student has experience with using an organizational tool or tools, of choice, before coming to college. However, sometimes in a new environment the tools and skills used and learned to compensate for executive function deficits do not transfer easily to a new setting. Because the setting has changed, the student may need time “extra” transition time to begin the use of these tools and to maintain routines in the new environment.

Coping Skills
Individuals with an autism spectrum disorder frequently describe themselves as dealing with a lot of anxiety and stress. Sensory sensitivities, social and communication expectations as well as transitions and unexpected changes often trigger this anxiety and stress. It is during these times when these students may display behavior that can seem bewildering, rude or disruptive. Most often when a student displays these behaviors they are doing what they know to do to cope. In fact, these sometimes “confusing” behaviors are often experienced as calming. Included below are examples of coping behaviors in which students with an autism spectrum disorder may engage and possible accommodations.

When under stress, students on the autism spectrum may engage in stress relieving activities which look odd and may even make others feel uncomfortable. These activities may include body rocking, pacing, waving or flapping hands or fingers repetitively, chewing on their clothing or body, “lecturing” on a topic of interest or they may display the “opposite” emotion for the situation. They also may abruptly leave the situation with no explanation before or afterwards.

A possible accommodation in helping the student cope, in the moment, might be to discretely ask the student if something is overwhelming and/or ask if the student needs help or wants to leave. Do not discourage or interrupt behavior unless truly disruptive and understand that student does not intend to be disrespectful. Allow sensory items and/or other “comfort” objects. A student, who is having a hard time coping, might not realize when s/he is being disruptive and needs to leave. The instructor and student can agree on a cue that the instructor can give to signal to the student that it is okay/time to leave. They can also agree on a signal, to inform the instructor when the student is overwhelmed or confused.

Ideally, preparing young adults with an autism spectrum disorder for the demands of college has started years earlier. With a proper diagnosis, individualized early intervention and careful transition planning, college students with an autism spectrum diagnosis, will be better prepared to advocate for themselves. At the same time college professors and other staff at post-secondary colleges and universities need to be prepared for students on the spectrum who are seeking to be a part of these institutions in greater and greater numbers. These students must be given reasonable accommodations to provide an equal opportunity for pursuing a college education. Many great minds and opportunities for society could be lost if individuals on the autism spectrum are not supported in their post-secondary academic pursuits.

Note:

The information in this article is based on Marci Wheeler’s work at the Indiana Resource Center for Autism, Indiana Institute on Disability and Community at Indiana University-Bloomington; including her role as Advisor for the Students on the Spectrum Club at Indiana University – Bloomington.

If you need more information about supporting students on the autism spectrum in a university/college setting, please contact your local autism organization or campus office for students with disabilities to find out who can assist. Indiana residents can contact Marci Wheeler at mwheeler@indiana.edu or phone (812) 855-6508.

With Special Thanks to the members of the Students on the Spectrum Club at Indiana University – Bloomington for sharing their insights as they navigate the college setting.

Resources
Attwood, T. (2007). The complete guide to Asperger’s Syndrome. Philadelphia: Jessica Kingsley Publishers.
Harpur, J., Lawler, M. & Fitzgerald, M. (2004). Succeeding in college with Asperger Syndrome: A studentguide. Philadelphia: Jessica Kingsley Publishers.

Palmer, A. (2006). Realizing the college dream with autism or Asperger Syndrome: A parent’s guide to student success. Philadelphia: Jessica Kingsley Publishers.

Prince-Hughes, D. (2002). Aquamarine Blue 5: Personal Stories of College Students with Autism. Athens, OH: Ohio University Press.

Wolf, L.E., Brown, J.T,. Bork, G. R. K. (2009). Students with Asperger Syndrome: A guide for College personnel. Shawnee Mission, KS: Autism Asperger Publishing Company.

 

What You Need to Know about Seizures and Autism

August 15, 2013

Silently Seizing I received the book Silently Seizing a while back and only recently found the time to crack it open – and I’m glad I did! Most people recognize grand mal seizures. However not many know how to recognize an absence seizure, a partial seizure, or a complex partial seizure – they may interpret the odd behavior as a characteristic of autism. Recognizing possible seizure activity is only one of the areas covered in this book which was the winner of the prestigious National Parenting Publications Award. (I like this book so much I also posted about it  on Psychology Today).

This clearly-written book is by Caren Haines, RN who is not only a registered nurse, but also the mother of a 24 year old son diagnosed with autism who suffers from seizures. Caren makes the important point that often times medical professionals analyze the behavior of a person with autism as just being part and parcel of autism, when in fact most of us parents and wise educators have figured out that all behavior is communication. In some cases, a child or teen may be having subclinical seizures and instead of treatment is given a behavior plan.

Caren shares not only how to recognize possible seizures, but describes the helpful data for parents to collect for the neurologist looking to see if a silent seizure disorder is present. As well, Caren shares her son’s experience as well as that of other families, which helps the reader understand more about life with seizures. Dr. Nancy Minshew and Dr. Darold Treffert provide valuable information as well. Also included in the book is a very helpful chart of medical tests to identify underlying causes of autism that may influence the ultimate prognosis of autism.

An important fact that I always tell my audience when I present on the topic of Adolescents and Autism: Many teens on the spectrum who have not been diagnosed as having seizures earlier, develop (or are identified as having) seizures during the teen years – probably related to puberty.

Parents should read this easy-to-digest book to understand more about seizures. It might make a big difference in your child’s life!

 

Hire Autistic People; Here’s Why

January 28, 2013

Margaret Heffernan, blogger for for INC. interviewed me about autism and employment and wrote this blog post. You can read the original post and comments here.

Jeremy is autistic. He is also very bright, observant, and, it now appears, synesthesiac: he sees people, ideas, and feelings in colors. At first, his mother Chantal was skeptical–“I’m not, she said pointedly, from California; I’m from New York!” But she appreciated that Jeremy was being (as always) totally honest in what he told her and, when he said he wanted to start painting, she took him seriously, and encouraged him.

“He’s painting his dreams,” she says, “and people will pay for that. So often, he does advocacy for the autism community. He sits on taskforces. He has tested curriculum to teach life skills. He does conferences. He writes articles, and blogs for the United Nations. And, most of the time, people expect him to do this for nothing–or for coverage of his expenses. He is grateful for the opportunities. But he has a life, and a living to earn too. So the fact that people will pay for his painting: I’m all for that.”

Chantal Sicile-Kira is a leading authority on adolescent and early-adult autism. She’s written five books on the subject, the latest of which Jeremy co-authored. A passionate advocate for the autism community, she is adamant that autistic adults can and will be valued employees.

“Lots of people are pushed into academic qualifications and that’s fine,” she says. “But then the system breaks down after high school. It’s important for people on the autism spectrum to take an extra school year to learn life skills: self advocacy, relationships, organization. If they can do this, they can become employable. It’s utterly wrong that they should end up pushing shopping carts when, a year earlier they were getting high grades.”

As Jeremy writes in his blog, while “unemployment rates are frankly high for people in general, studies in the U.S. show it is greatly higher for those with autism. For example, the organization Easter Seals reported in a 2008 study that 22% of people with autism over the age of 16 have a paying job, compared to 75% of people who don’t have autism. This truth is that our differences make it difficult for employers, employment agencies, and job coaches to realize our capabilities and to offer specific recommendations based on our shared label. Belief in the ability of each person is necessary because judging us by neurotypical (ie “normal”) standards is not a real measure of our capacity for learning and being able to earn a living.”

The imminent arrival in the United States of Specialisterne has prompted a fresh debate about how to employ autistic talent. The Danish firm has pioneered finding meaningful roles for autistic people in Europe and now founder Thorkil Sonne hopes to do the same in America.

“It makes perfect sense,” says Sicile-Kira. “There are so many things that autistic people can do–and do well. For example, anything very repetitious and detail-oriented, work that requires great visual memory for the spotting of anomalies. You might not often think of someone with autism in terms of communication but they can be fantastic at understanding rules-bound communication, where it matters exactly what can and can’t be said to whom. Autistic people are very loyal, fastidious, and reliable. They are not going to come in late because they had too many tequila shots the night before.”

What’s key, she says, is to find (or to become) trusted intermediaries. That isn’t something that is unique to the autism community; after all, she says, she has a book keeper for her accounts. Jeremy is a wonderful painter but he needs someone to help with marketing; most actors have agents. What’s the difference?

I’ve known Chantal for a long time and have always been in awe of her astonishing energy and imagination. She’s proved a brilliant champion for the autistic community and never more so than now, when the first large generation of children, diagnosed correctly with autism, is about to graduate high school. She challenges all of us to think differently about who we might employ and how.

“It will be an economic failure if the new wave of high school graduates can’t be employed. All these kids have talent and ability and a tremendous capacity to contribute. We have to stop thinking that all employees have to be the same, with the same skills, the same attributes.”

Creating Opportunities for Youths with Autism: The Autistry Studios

December 12, 2012

The last few months I’ve been traveling for speaking engagements and everywhere parents and educators are concerned about the future of their student or child. Whether it’s New York, Texas, Florida, California, Ohio, New Jersey or Maryland, there is concern: What will our youths do to earn a living when they transition out of school, and how can we best prepare them?

Starting today, as we head into the New Year, I would like to highlight on a regular basis people and organizations that are creating innovative opportunities for our young students to learn skills they can then apply to getting a job or earning money. I’ll also highlight those who are creating successful job and career opportunities for those on the spectrum.

If you have a story you would like to share, please send it in. We can all learn from each other.

Today I’m highlighting The Autistry Studios founded in 2008 with 4 students  by Janet Lawson and Dan Swearingen, the parents of Ian. When I wrote about them in the Social Relationships chapter  in  A Full Life with Autism (published in March 2012), they had about thirty students and workshops such as  a Build Stuff, Film, and Theater workshop. Now they have over 40 students.  Their mission was to provide a place where teens and young adults could create social relationships and develop skills based on their interests that could potentially lead to employment. Now, Autistry Sutdios’ next phase is to launch Autistry Enterprises, a manufacturing company creating unique works designed and made by Autistry students.

They say a picture is worth a thousand words, so watch this well-done ABC7 special. The Autistry Studios was recently  featured in their Profiles of Excellence.

Fell free to comment below, and don’t forget to send us your story of innovation!

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.

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

13 Things to Keep in Mind as Your Child with ASD Reaches Adolescence

March 2, 2012

 Often I get emails from parents who  think their child is getting worse when they hit the double digits.  That’s what it seems like when puberty hits!  So I’m reprinting this article I wrote about adolescence that  first appeared in the Autism – Asperger’s Digest. The article appeared a few years ago, but the worries and challenges faced by parents are the same as they were when I wrote it. I hope you find it useful.

As well to provide an opportunity for parents and educators to have more in-depth information, I’ll be giving a course on Adolescence and Autism here in the  Autism College Classroom on September 10, 17, 24  from 6:00 pm to 8:00 pm PST  (9:00 pm to 11:00 pm EST)   Participation is limited so that participants can have time to ask questions and get advice.  Click here for a description,  Click here forpricing and to enroll. Questions? Email me at Chantal@AutismCollege.com. 

 13 Things to Keep in Mind as Your Child with ASD Reaches Adolescence

0009Living with a child on the autism spectrum day after day, parents often miss the little changes that are so typical of all kids’ development. One day I looked at my son, Jeremy, and realized he was already up to my chin. And what was that – facial hair? His behavior started to change as well. As a young child he’d always been compliant; we spent years trying to teach him to say “no” and mean it. So I was thrilled when he just didn’t want to do what we wanted him to do anymore.

Autism and adolescence: each on their own can be interesting and challenging, to say the least. Together, they form a volatile mix that can arouse daily anxiety in even the most prepared adult. If you live with or work with a pre-teen with an autism spectrum diagnosis, attention to the following 13 points can help you and your child navigate those years a little more smoothly. One caveat: it doesn’t matter the functioning level of your child with autism or Asperger’s; everything here applies. You’ll work them out differently depending upon his or her cognitive, emotional and/or communication abilities, but don’t overlook them, thinking they don’t relate to you child. They do!

  1. Noncompliance: it may not be autism, it may be adolescence. Whether or not they have autism, there’s a definite ‘shift’ in behavior and personality when children turn into teenagers. Wanting your attention changes to wanting their independence. For kids on the spectrum, this behavior change may look like non-compliance; they don’t follow through on your requests as before. But it’s actually a normal part of their development, entirely aside from their autism. As a parent it’s important to support your teen as he struggles to become his own person, and even though it may be hard to appreciate, this is a positive development. After years of being taught to do as he is told, your teen needs to start learning that it is acceptable at times to say ‘No,’ or he might find himself in dangerous situations with peers or others looking for an easy victim to prey upon.
  2. Teenagers need to learn to make their own choices. Giving choices to your growing teen will teach him about decision making and accepting the consequences of his choice (good and bad), as well as help him realize he will eventually have more control over his own life. This applies no matter what the functioning level of the child. Offer him choices, regularly, and abide by the choice he makes. Remember, as he gets older he will want and need to be more involved in his life and his transition planning. By letting him make choices now (within your parameters at first) you are teaching him valuable life skills.
  3. Chores teach responsibility. At any age, it’s good to teach children that being part of a group (whether it is a family, a work group, or a community) brings with it a certain level of responsibility. If your pre-teen has somehow been exempt from chores and group responsibility, let this slide no longer. Teens need to learn that living in a house with other people entails responsibilities as well as pleasures. Chores teach the teen to be responsible for himself, to live independently, as well as foster self-worth and self-esteem. ALL individuals with autism can be taught to contribute at some level. Do make sure your child has opportunities to do so.
  4. Watch out for seizures. One of every four teenagers with ASD will develop seizures during puberty. Although the exact reason is not known, this seizure activity may be due to hormonal changes in the body. For many the seizures are small and sub-clinical, and are typically not detected by simple observation. Some signs that a teen may be experiencing sub-clinical seizures include making little or no academic gains after doing well during childhood and preteen years, losing behavioral and/or cognitive gains, or exhibiting behavior problems such as self injury, aggression and severe tantruming. (Read my post about a useful book here).
  5. Talk to your child about his/her changing body. Imagine how scary it must be to realize your body is going through some strange metamorphosis, you don’t know why and there is nothing you can do about it. Whether your child has Asperger’s Syndrome and has sat through hygiene classes at school, or he is more impacted by autism and you’re not sure how much he understands, it is important to discuss the changing male and female body in a simple way he can understand. Otherwise, your teen may be overly anxious and agitated when she starts menstruating or when he has wet dreams. Visuals that include photos or drawings and simple words may be helpful, especially at the beginning. Be concrete and don’t overwhelm – this is certainly not a one-time talk!
  6. Masturbation: a fact of life. Let’s face it; masturbation is a normal activity that almost all teenagers engage in. Once discovered, it is an activity hard to stop, especially for individuals who enjoy self-stimulatory activities and can be obsessive compulsive, as are many people on the autism spectrum. The best approach is teaching your teen that this is a private activity to be done only in private at home, in a designated place such as his bedroom.
  7. Relationships and sexuality: topics that need to be discussed. Sexuality is a topic that most parents are not comfortable discussing with their children, even their neurotypical teens. However, it is necessary to talk to your teen on the spectrum about sex and the many types of relationships that exist between people. It is naïve of parents to think that because their child has autism s/he won’t need this information. Teens talk, and invariably your child will be hearing about it from their NT peers at school. Whatever the functioning level of your child, he needs to be taught about appropriate/inappropriate greetings, touch and language when interacting with members of the opposite or same sex. Don’t leave this important part of his social-emotional development to locker room education.
  8. Self-regulation is important for life as an adult. An important skill for every teen to learn is the ability to control his or her reactions to emotional feelings and sensory overload. Hopefully, by the time they are teens your child or student has learned to recognize their feelings and impending emotional or sensory overload, and ways to handle the situation. In school this could mean practicing self-calming techniques or signaling to the aide or teacher they need a break and having a ‘safe place’ or quiet room to go to. At home, teens should have their own quiet spot to retreat to when overwhelmed. And parents: respect their need to do so!
  9. Self-esteem is the foundation for success. While children are young, start building this foundation by emphasizing strengths rather than weaknesses. If your child with ASD, no matter what his age, has low self-esteem pay attention to the messages he is receiving from people around him at home, at school and in the community. In all likelihood, the message he is hearing is that he can’t do anything right. Teens need to be told when they are acting, responding and communicating appropriately, as well as that their (considerable) efforts to do so are appreciated. Where there are challenges, it is up to us, as the adults in their lives, to help them find strategies to be effective. Teens can be at high risk for depression. Parents should ensure their teen knows they are valued and loved under all circumstances, not just when they ‘get it right.’
  10. Self-advocacy is required for independence. Eventually your teen will be living away from home and will not be under your protection. He needs to know how to speak up for himself. Start this training while he is in school. IDEA 2004 mandates that students be invited to participate in transition planning and this supportive environment can be good ‘training ground.’ Make sure your teen is aware of his strengths and weaknesses and how he is different from others. In this way the teen can gain a real-life understanding of areas he may need to improve upon or that require assistance from others, and areas in which he is proficient, or that are his strong points to build upon.
  11. Bullying is a serious problem and should be treated as such. Bullying can range from verbal taunts to physical encounters. At any level it is not an individual problem, but a school problem. Unless your child’s school strongly enforces a no-bullying policy from the principal on down, your teen may have a difficult time. Teens on the spectrum are poor at picking up social cues, understanding ulterior motives, sarcasm, and predicting behaviors in others. As such, they unknowingly put themselves in unsafe situations. At other times their unconventional grooming or dress, often stilted language and rule-bound obsessions can render them targeted victims. Ensure your teen learns the meaning of non-verbal behaviors and the hidden curriculum (i.e. the unstated rules in social situations). Enlist the help of a neurotypical teen or sibling when shopping for clothes or getting a new hairstyle so your teen has at least a semblance of ‘fitting in’ with his peer group.
  12. The Individualized Transition Plan (ITP) is your teenager’s business plan for the future. Second only to the early intervention years, the transition years in high school are the most important years in your child’s educational life. Skills your teen needs to learn to survive and thrive as an adult, in adult settings, should be the focus of this time in school. The ITP, mandated through federal special education law, is the roadmap for your teen’s future. Once your child graduates or ages out of high school, mandated services are few and programs have waiting lists that extend into years. Spend time (and include your child as much as possible) thinking about what he wants to be doing when high school ends, and 5-10 years from now. Then plan how he will get there and what skills will be needed. This “futures planning” should drive the goals written into his IEP.
  13. Parents, you need to take time out for yourself; it’s good for your child too. With all the responsibilities you have as a parent of an adolescent on the spectrum, you need to take some time out for yourself. Whether it is a short break you take every day to go for a walk, exercise or engage in a favorite activity, or a weekly evening out with your significant other, you need to recharge your batteries. This is also positive modeling for your pre-teen and teen. It teaches that life can be stressful and overwhelming at times for all of us, and that we need to develop ways to manage our stress, and enjoy life, not just l

Just the other day I was looking around the house for Jeremy. I knocked on his bedroom door. He opened the door a crack, one of his Guitar World magazines in hand. I could hear Dave Matthews playing in the background. “Go away, Mom,” he said, and I did, with a little smile on my face. Jeremy is significantly impacted by his autism. Yet moments such as this remind me that he is first and foremost a teenager, with his own personality, his own wants and wishes. He’s on the road to becoming his own person, figuring things out in preparation for adulthood. I wouldn’t have it any other way.

For more information on Adolescence and Autism, sign up for my on-line course.

How Can We Help Prevent Bullying of Students with Autism?

February 2, 2012

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

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

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

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

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

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

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

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