Love, Sex, God, & Autism

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.

Your Child With Autism: Life as an Adult & Planning Ahead

The colors of my life as a young boy web

The Colors of My Life as a Young Boy   

Happy days are represented by yellow and green for the calm of doing nothing. Blue for the knowledge my mom gave me. Truly my mom gave me hope represented by white. Truly my mom was the first one who saved me from despair represented by little strokes of red. Greatly my life was mostly pleasant  represented by the color of nice light orange. Gold from above is helping. Greatly my life is better now. – words and painting by Jeremy Sicile-Kira

Thinking about when your child ages out of school services is pretty scary for most parents of teenagers with autism.  The reality is that parents can create a successful future for their child.  But it doesn’t just happen overnight – it’s about having a plan and using the IEP process.

If there is anything I’ve learned as a parent of a child with autism, it’s that you can’t just leave it up to the system – school or adult services –  to figure it out. You have to be involved.  It’s important for parents to realize that when your child ages out of school into adult services – your child ages out of mandated services. Under IDEA – the Individual with Disabilities in Education Act – all students are guaranteed a free and appropriate education.

When your teen or young  adult  either graduates from high school or ages out of school services (at age 22 in most states) – there is nothing guaranteed for your adult child.  Your adult child may be eligible for services, but that does not mean that he or she will receive services. It means they will be eligible to get on waiting lists.

This is why it’s important to  plan ahead and to use the  IEP system to get the goals and objectives on the student’s IEP to learn what they need to learn in order to be successful adults. There are life skills that  every person needs to learn to be able to get and keep a job, enjoy their free time,  live as an adult as independently as possible.   The ITP – Individualized Transition Plan  – exists to plan for the student’s hopes and dreams for their future as adults. Once the ITP is written, the IEP should have goals and objectives that reflect the ITP. Just like your child’s earlier school years, don’t accept the status quo in transition programs because ‘that’s what we do here’ if it doesn’t fit your child’s needs.

Every student is different, but  goals and objectives can be written for every type of person – every student’s ability. Everyone is able to learn – but educators and parents have to be cognizant of HOW that student learns best and WHAT motivates them. Do they have something they really like to do? What are their strengths? For some it is not as obvious. For example, Jeremy just liked to stim, mostly. He liked looking at colors and patterns on  book covers and on rugs. Then he liked learning, and writing when he learned how to communicate by typing – which was a long process.  Then he discovered painting – which he did not like as a child, probably because of the sensory aspects.  Turns out those patterns he liked, were really full of colors he was dreaming about at night. But we didn’t know that till he was 23 years old!

The point is, never give up on your child –  or teenager – or adult. Learning is forever. But it is only while your child is still eligible for  mandated school services under IDEA  that  he or she  will be guaranteed the educators  and supports needed to learn. But be cognizant that the school system can’t do everything.  What can you do that will help your child prepare for the future, or how can you support  your child’s educator  and classmates? For example, If your child has a certain interest, can find someone to mentor him in that after school? Is your child learning to do some chores? Can you find your teenager a volunteer job so he learns responsibility? Can you partner with other parents and support each other and possibly create some options together?

Obviously, this is easier in some cases that for others. We’ve had to spend a lot of time and energy over the years to create opportunities for Jeremy because of his sensory-motor challenges. Jobs or functional living skills that require a lot of fine motor skills are really challenging for him.  Meanwhile he has a productive life doing what he loves, while still working on those living skills he needs to learn. He has a great support team, and  has his independence, but we  are still involved in helping him create his adult life based on his wants and needs. And there is no way we could do it alone, or that any agency could do it alone. It does take a village!

My son Jeremy and I co-authored A Full Life with Autism  so that  parents and educators could learn more about the reality of adult services is, and to offer suggestions on how to best prepare a student with autism for real life. Model programs that parents and professionals have successfully created together are provided.  We hope the book  informs you, and inspires you to plan ahead using the IEP process and whatever else you can do. We also hope  it will inspire parents to get involved and  help create the future with other

like-minded parents and professionals. Together, we can make a difference and create the future.

Chantal Sicile-Kira is an author, speaker and consultant on autism, adolescence, transition services and the effects of autism on the family. Chantal can be reached here.  Feel free to leave comments below.

Full Life Book w Border

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

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.

 

Transition to adulthood: Jeremy is moving into his own place!

Jeremy (a bit overwhelmed with so many people invading his space at the same time) and part of Team Jeremy.

Jeremy (a bit overwhelmed with so many people invading his space at the same time) and part of Team Jeremy.

Jeremy is moving into his own place. Months ago, when we found out that Jeremy  received the approval and supports (from the powers that be) to make Jeremy’s dream a reality, I enthusiastically stated in an AutismCollege blogpost that Jeremy and I would be blogging about the process of preparing for this major transition – in the hopes that some of the information would be useful to others.

As John Lennon once wrote, “Life is what happens to you while you’re busy making other plans.”  Here it is, almost six months later, and we’ve had no time to write.  I’ve moved over fourteen times since I was a baby, so I’m no newbie when it comes to moving into a new home. But for Jeremy, moving meant more than just transferring to another living space. In the book, A Full Life with Autism, Jeremy and I described  some of the preparation that has been ongoing for years. Here’s what the last six months have entailed:

  • Learning to be more independent in certain home skills:  Learning physical tasks is challenging for Jeremy due to his visual processing and motor skills. Practicing in a familiar environment helps before transferring the skill to a new environment. We have to break down tasks into simple steps.
  • Learning what it means to be a good housemate: As soon as Jeremy knew that his dream was coming true of having his own place shared with another person; he wanted to know what it meant to be a good roommate. He asked a young man he knows at his volunteer job to have breakfast with him so he could ask him what to look for in a roommate, and how to be a good roommate. He had heard this man talk about his roommates, so he figured he might have advice. Then, Jeremy wrote some simple rules for himself to follow, ie “The first rule is that I need to do my dishes when I make food.”
  • Finding the right apartment in the right neighborhood: Jeremy has always wanted to live in the neighborhood he grew up in because everyone knows him. When he goes out shopping, or walking the dog or to the beach, people stop and talk to him. That’s important to him.
  • Finding the right housemate: Jeremy needed to find someone who would share the apartment with him (each have there own bedroom and bathroom). Jeremy needs 24 hour supports, and the apartment-mate would be responsible for being there most nights. LifeWorks (the company that was vendored to provide supports and supervision to make all this possible) found Jeremy’s housemate.
  • Finding the right staff: We are lucky in that we have wonderful support staff that have been with Jeremy for years, but we needed more people to fill all the hours on the schedule, and LifeWorks  found people that were a good addition to the existing Team Jeremy.
  • Staff training: Because of Jeremy’s communication challenges, training was and continues to be a high priority. New  ‘Team Jeremy’  members receive a certain amount of training so that they- and Jeremy -can feel comfortable and safe as they go about their day.
  • Preparing the apartment: Having the apartment as functional as possible for Jeremy helps him be more independent. Where everything is placed in the cupboards, how everything is organized is what makes him successful in completing tasks. Think about how someone with limited visual skills and limited motors skills needs to be able find and get what he needs for everyday life – that’s what Jeremy needs to be as independent as possible.
  • Having his sister Rebecca’s advice on his décor: Jeremy was very clear as to what he wanted in the apartment (very little) the colors he wanted (solid, no patterns and lots of green) and what he wanted to hang on the walls (a few paintings representing calmness, friendship, love). But he wanted his sister- whom he has helped move away to college and into different living situations there- to help him find the furniture needed in the living room and to help him with figuring out where to hang his chosen paintings and posters.
  • Earning the money to pay for his rent: Jeremy is responsible for his share of the rent, and he wants to earn money from his painting. Mom is helping with the marketing at the moment (anyone want a painting, prints or cards? Contact me!).

There is undoubtedly much more to add to this list, but this is a good start. At time of writing, September 1st is the official date for Jeremy’s full-time move to his apartment.  Just like Jeremy learning the skill of pointing to letters to communicate, being ready to move out away from his parents did not happen overnight. He has been preparing for this transition for many years (read A Full Life with Autism).  It’s a process, and it is still ongoing. There are sure to be bumps in the road, but that’s life. We feel grateful that wonderful Team Jeremy and LifeWorks are here to support him  as he takes the first steps of living his dream.

Free Online Autism Conference April 26th & 27th: Focus is on Transition to Adulthood

 Moms Fighting Autism and Autism College are partnering up to offer a free virtual conference on Saturday April 26th and Sunday April 27th from 8:00 AM to 5:30 PM PST. This year’s theme is: Autism from Adolescence to Adulthood, Preparing for Independence and Growth. Keynote speaker Chantal Sicile-Kira, author of five award-winning books on autism, will be speaking on Preparing for the Transition to Adulthood.  Speakers include: Brian King, author of Strategies for Building Successful Relationships with People on the Autism Spectrum, Greg Zibricky,CFP, author of F.A.M.I.L.Y. Autism Guide: Your Financial Blueprint for Autism; Janet Lawson and Dan Swearingen founders of Autistry Studios, on Building a Working ASD Community; and Wendy Partridge, Executive Director of Heroes of the Game, Inc., speaking on “Work Incentives Planning and Assistance.” 

011_3“The transition to adult life can be a rude awakening for parents as well as the young adult,” said autism expert and founder of AutismCollege.com, Chantal Sicile-Kira. “The unemployment rate for adults with autism is very high, and we can do a better job of preparing them during their school years. Listening to these speakers is a great way to get empowered with the information parents need to know.”

 We know that parents and professionals don’t always have the ability to attend conferences due to time, geographical location, or finances, and hope you’ll consider joining us virtually. Registration is completely free, and attendees can use their computers or smartphones to both listen to the talks as well as post questions live to the presenters. Readers may sign up for the conference here.

“In honor of Autism Awareness month, I want to provide free practical information on autism to all who need it,” said Ernest Priestly, Founder of MomsFightingAutism.com. “For many parents, it is difficult to leave home to attend conferences. A virtual conference is the best way for moms, dads, grandparents and teachers to get information they need without leaving their home. I’m glad I can help make their lives a little easier.”

About Moms Fighting Autism: MomsFightingAutism.com hosts webinars for mothers of children on the autism spectrum and anyone interested in learning more about autism. MomsFightingAutism.com provides tools and services that allow members to connect, support and learn from each other.

About Autism College: AutismCollege.com, founded by the author Chantal Sicile-Kira, provides practical information and training, on-line or in person based on her books.

The Three Models of Autism – One Person’s Perspective

Jackie McMillan, BES

Jackie McMillan, BES

Autism College occasionally publishes guest blogs of different perspectives.  This blogpost is by Jackie McMillan, B.E.S., who has Asperger’s Syndrome. Jackie’s self-directed recovery started in 1976 at age 11.  Since her first inkling that she was autistic in 1988, Jackie has been combining her recovery discoveries with those of other autistics, and with scientific research from a variety of health fields.  Finding no workable model of autism, she has created one that helps others to optimize the gifts, and minimize the challenges of Autistic Spectrum Disorders.  She has drawn on her degree in environmental studies, two years of pre-medical training, and many certifications in complementary health.  Jackie lives by the motto:  If you know things have to change, you might as well enjoy it! For more information about McMillan, visit  ThriveWithAutism.ca  

The Three Models of Autism

Have you ever wondered why some autistics get health and functional improvements from an intervention like food changes, and other autistics just don’t? Or wondered why there’s such a big gap between a good day, and a bad day, for the autistic in your life?

I have a unique perspective on this. I have autism, and at age 11, I spent one month at a wilderness canoe-tripping organization. Through that month, ever-so-gradually, my pain levels dropped, my emotions smoothed out, my thinking and memory improved, my reaction times got much faster, and I was able to make and keep friends. Unfortunately, within two days of my return to my normal inner-city environment, everything slid back to ground zero. I desperately wanted to go back to that amazing quality of life, though, and I was determined to figure out how to recreate it.

The Turning Point:

I turned my life into a science experiment, testing out every factor that had been different between these two environments. Through lifestyle choices, my thinking improved enough that I was able to go through the science track in high school, where I began to chase down my symptoms in the medical journals. No-one ever mentioned autism; my parents felt I had enough to deal with, sans diagnosis and the threats of institutionalization which would have been normal at that time.

In my second year of pre-medical studies, I hit a roadblock. Though the medical journals covered many of the factors which I had discovered could help or hurt me, the medical program was focusing all of its efforts on diagnostics, and drugs. I knew drugs were trouble; in a pharmacology course, I had looked up every drug I’d ever taken. I had all the side effects plus some, and even the intended effects were disproportional.

I took some time off to regroup, and ended up in a different university program, environmental studies. Around that time, a nurse gave me an informal diagnosis of autism. The medical journals were spot on in their diagnostic criteria of ASDs (as applied to me), but the treatments and theories didn’t make sense at all, in terms of my own experiences. Fortunately, other autistics’ experiences mirrored mine: I wasn’t crazy in what I had identified could help, or hurt!

Right now, there are three models of autism.

The Outdated Model of Autism:

The outdated model says that autism is an incurable neurological disorder, and that nothing can be done except to suppress the symptoms in a variety of ways. If an autistic’s health improves enough to camouflage in the school or working world, then the original diagnosis must have been wrong. An unintended result is that this model silences autistics who have experienced some degree of recovery.

The Bio-Medical Model of Autism:

We now know that this outdated model isn’t true, because doctor’s children have recovered enough health function that these MDs have begun treating other autistic children, with some success. These doctors are working with the biomedical model, which says that autism is caused by some combination of malnourishment, impaired detoxification, and immune dysfunction.

The bio-medical treatments are expensive supplements, detox protocols, and immune supports. Unfortunately, it is often carried out in a “one-size-fits-all” manner, without careful study of which impairments might need to be addressed before action can be taken on the others, for each individual. It is also inaccessible to many who cannot afford the treatments, or find a doctor who keeps up with the research, and the results are spotty.

The Five Root Causes Model of Autism:

But there are many, many adults in the autistic spectrum who began with much more impairments, yet are now sufficiently functional that we can participate (at least to some extent) in venues and interactions formerly limited to the non-autistic population. Our collective experiences point to two root causes of autism which are not included in the biomedical model. These are unresolved trauma, and brain and nervous system impingement.

Autistic experiences also point to simple and inexpensive lifestyle choices which can maximize function — or quickly detract from it. This makes a great deal of sense of the variable function and symptoms of each individual with an ASD, from day to day! With different blends of the different root causes in action for each autistic individual, these lifestyle choices vary, but the commonalities are obvious.

Interventions vs. Lifestyle? Or both?

Beyond lifestyle choices, interventions can still make a huge difference to health, function, and quality of life for autistics. How do we tell which interventions will help which autistic? Fortunately, the symptoms themselves point the way. The unique symptoms expressed by each individual can make it much easier to understand which of the five causes might be in action, to which degree, and in what order of precedence, for that specific individual.

But tailoring treatments to the relevant root causes is not enough, on its own. Without the lifestyle changes which support a return to health, functional gains are as short-lived as mine were from that summer camp experience. Fortunately, what is healthiest for people with ASDs is what is healthiest for our entire human race. Health challenges as disparate as hair loss and cancer respond favourably to the same lifestyle changes.

Which straw broke the camel’s back to bring on autistic symptoms can be figured out, and quality of life improved, for every individual on the autistic spectrum. Some repairs are easier than others, and some are more complete. But the potential contributions all of us autistics, with our problem-solving brains, are needed by our culture in this time of change. Won’t you please help us to thrive?

Preparing to Move : Will mom survive the empty autism nest?

Rebecca and Jeremy Sicile-Kira,  high school graduation, June 2010

Rebecca and Jeremy Sicile-Kira,
high school graduation, June 2010

When my daughter Rebecca moved away to college four years ago, it was difficult. At the time I joked that she left me living with two non-verbals (my husband and Jeremy) but that is what it felt like. Rebecca was vivacious, energetic, very verbal and social, with friends in and out of the house. I loved hearing the laughter (the sweetest sound in the world) emanating from her bedroom or the family room downstairs.

The other difficulty was the concern I had, like most parents, of how your teenager will do being away from home. Will she make wise choices? Have we taught her enough about staying safe without making her paranoid? Have we taught her enough about staying organized, doing household chores and cooking so that she will be a good roommate once she moves out of the dormitory? (To be honest, she never showed any enthusiasm for any household activities, except perhaps baking chocolate chip cookies from scratch).

Now it is Jeremy’s turn to move out, and I am torn by many emotions. Before, Jeremy’s move was a theoretical construct. Now it is official; word came from the powers that be in recent days. We have been preparing for this moment for a long time; in fact we have been advocating for many years for this to happen. I’ve been bracing myself for this moment for some time, and it is finally here. Jeremy and I have written abut this in A Full Life with Autism, and I’ve discussed it some in Autism Spectrum Disorder (revised).

On the one hand, I am not getting any younger and I am really exhausted from the level of care and supervision Jeremy needs, as well as supporting him in reaching his goals as a writer, advocate and artist. It would be OK if all I did was support Jeremy, but I must earn a living as well, and exercise to stay healthy and strong. We are lucky in that we have some help from the system that pays for some hours of respite and support to Jeremy. But that requires my time and energy – finding, training, supervising staff and teaching Jeremy to have a larger role in that. Thus why I have little downtime or social life.

But the wonderful support staff who are in and out of here with Jeremy for part of the day have somewhat filled  part of the void left by Rebecca in terms of young energy and vivaciousness (obviously they could never replace her as my daughter!). I realize when Jeremy moves out, not only will I miss him, but I will miss the support staff and Handsome the dog. As a writer, I have at times missed the lack of privacy with people and Jeremy coming and going in the house, but I realize that the Afternoon Angels and Jeremy’s Team have been an important part of my social life for some time now. And when Jeremy goes, so will they.

As we start telling friends and family Jeremy is really moving within the next six months, the most common reaction is “you won’t know what to do with yourself.” Actually, I have a pretty good idea – focus on my health and exercise, work on a pilot program that is currently in concept stage, accept more speaking gigs, earn more money to help pay for Jeremy’s housing costs (and Rebecca’s college loans),  write that book I have always wanted to write (it doesn’t have autism in the title!), and sleep a bit more. Most of all, I will be able to live spontaneously: not have to check the schedule to make sure I have ‘Jeremy coverage’ before saying yes to some much needed ‘me’ time – taking a walk, having a cup of coffee or glass of wine with a friend, going to the movies with my husband.

I know it will not be easy emotionally speaking – I will miss Jeremy, just as I missed Rebecca when she moved away (and still miss her). But I know we are very connected, and nothing will ever change that.

Jeremy and Rebecca Sicile-Kira,  college students

Jeremy and Rebecca Sicile-Kira,
college students

 

What Does your Kid Want to Be When He or She Grows Up? Options Available at FRED Conference

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Every child has dreams and every parent wants to help them come true – and parents of children who are different (but not less) are no different. Only thing is, we need to be looking at options and working together to create some where none exist.

That’s why the national FRED conference is so important. Meeting other like-minded people to create a future worth dreaming about is empowering. And it is never too early to start. Last year, Jeremy contributed on a panel and this year it’s my turn.  There will be panels on housing models, employment, safety and well-being, and self-care (for the parents – we need to take care of ourselves, too!)

FRED 2014 is taking place Friday March 28 and Saturday March 29, at the LAX Marriott in Los Angeles. For more information about the experts (including many self-advocates) donating their time wisdom, experience and hope, visit www.FREDconference.org. I’m counting on seeing you there!

Meanwhile, enjoy this announcement from FRED about this year’s FRED Pioneer Award Winner, Kevin McGuire.

AbleRoad Founder and Disability Rights Leader Named as FRED Pioneer Award Winner

Manhattan Beach, Calif. — February 27, 2014 — Today the FRED Conference announced that Kevin McGuire is the 2014 recipient of the FRED Pioneer Award. This award is given to the individual or organization that best embodies innovation and advancement in the field of disability rights.

The FRED nomination committee selected Kevin McGuire in recognition of his pioneering work launching AbleRoad, the most comprehensive website and app designed to connect people with accessible places, and for his lifelong impact in the disabilities field. Kevin McGuire will receive the award in Los Angeles on March 28th when he serves as the FRED Conference keynote speaker.

“We are very proud to have Kevin McGuire as this year’s winner. He is a role model for so many in the disability community, both personally and professionally”, said FRED Director Mari-Anne Kehler. “Kevin has led by example to show that disabilities are not limitations, and that with vision and hard work anyone can succeed, and exceed, in life. He is a real visionary and true pioneer.”

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AbleRoad is a website and a smartphone app that allows users to review any public space – from restaurants and theaters to parks, hospitals and concert venues – and rate it for how well it accommodates people with disabilities or those with medical conditions. Users can upload photos and leave detailed reviews for others to read, allowing people with disabilities, their friends and caregivers to research whether a certain business or place is accessible, and to choose the places they want to patronize. AbleRoad also helps businesses understand the challenges their location may pose to those who use a wheelchair or have other mobility, vision, hearing or cognitive disabilities, and persuade them to make changes to improve their accessibility.

McGuire is also CEO and Founder of McGuire Associates, Inc., the nation’s leading consulting firm specializing in compliance with disability laws. His clients include high profile venues such as the Staples Center and Gillette Stadium. He has produced an ADA customer service training video for frontline employees, and a training video on how to evacuate people with disabilities from buildings during emergencies, which have been sold worldwide. He has used a wheelchair since age 7, when an intoxicated driver struck him. He has recently written a novel, PATRICK, based on his experiences growing up as a wheelchair user.

This is the second annual FRED Pioneer Award. Last year’s recipient was Pegi Young, who along with her husband, rocker Neil Young, founded The Bridge School for students with disabilities.

About FRED Conference: FRED is the premier organization to galvanize leaders focused to advance and enhance the futures of adults with disabilities. FRED is dedicated to the idea that all individuals deserve to live their passions, and determine their choice of the future they live. FRED brings top thinkers: experts, families, and self-advocates, together to share leading practices and accelerate approaches to building those futures. www.FREDconference.org

Preparing to Move: A Full life with Autism

Jeremy and Handsome

Jeremy, who is 25, is moving out into his own place within the year. For those that don’t know Jeremy, he communicates by typing and has many sensori-motor challenges.  I first started writing about him in  Autism Spectrum Disorder (Revised)  (Penguin 20014). We are all looking forward to this move. Transitioning to being an independent adult starts early in life and Jeremy has been working on learning different functional living skills since he was little.  In the book  A Full Life with Autism (Macmillan 2012), Jeremy described how having his own life and independence was important to him.

Over the next months we’ll be describing what Jeremy is doing to prepare for his move. Besides improving upon or learning new living skills, there is all that needs to be done for his self-employment initiative as an artist and advocate (visit his website, Jeremy’s Vision), and his volunteer work.  Jeremy is also trying to improve upon his social life, and we’ll report upon that as well.

When Jeremy was little, my husband and I were told to put him in an institution, and to get on with our lives.  That was never an option for us. Instead I worked hard at helping him reach his potential so he could live a life of his choosing.  We hope that our experiences shared here will encourage parents and educators to realize that even those who appear to be very impacted can learn to do more, no matter their age. The window of opportunity for learning never closes. Never give up! Perhaps you will have your own stories to share; we look forward to reading your comments.

Transition Planning: At Times Funny, But Always Real

I cherish this flower

I cherish this flower

Recently I was invited to speak in Sarnia, Canada – which is across the border from Detroit.  The conference organized by the Jumpstart Lambton Kent Teen Transition committee was entitled “Clarity, Please!” and was about the transition to adulthood.  They launched a new website  which has lots of relevant information and will make it easier for families and teens with special needs to  find the help they need. As well, there is a partnership with Ability Online, a free monitored, supportive, online community for kids, teens and young adults of all abilities.

I love presenting at different conferences around the planet as it gives me the opportunity to hear the experiences of different families, organizations, and the young adults who are on a mission to create the life they dream of.  I presented on Autism Life Skills  and A Full Life with Autism – information that is valid for any person with a developmental disability.  At “Clarity Please!” There was a panel of young adults and their families who talked about their transition to adulthood and how that was going. Although all the stories were different, there were some traits that all the families shared. These were:

  • the parents were strong advocates
  • they raised their children to have good self esteem
  • they made connections in the community
  • they partnered with helpful agencies
  • the young adults had learned to be advocates for themselves
  • they encouraged their  young adult to work towards creating the life they dreamed of, even if it was different from what the parents had imagined for their adult child.
Karen Holland and David Schaller of Pathways Health Centre

Karen Holland and David Schaller of Pathways Health Centre

At each conference there are always some touching and funny moments. My most embarrassing moment at the conference was when I mistook  the mayor of Sarnia and a member of parliament (who were sitting at the presenter’s table with me) as upcoming members on the family panel. I thought it was funny when   Dave Schaller, Manager of Family and Community Services at Pathways Health Centre for Children recapped the day saying my talk was “at times funny but always real.” That’s how I feel about trying to access services for my son, Jeremy!

The most touching moment for me was at the end of the day.  A father walked over and gave me a flower –  fashioned from pipe cleaners that had been placed on each table along with other fidget items. “Here,” he said “My son made this for you.”  Instances like this make the traveling to share information all worthwhile.