As I was sitting in Fiona’s classroom during the Open House at her high school last week, I glanced at the syllabus that her AP History teacher had just distributed. The thorough explanation of every topic, types of assignments and class expectations were intense. At 3 pages in length, it was intimidating. After reading over each page though, and after hearing the teacher explain his goals for the group, I began to feel a somewhat relieved. The information presented gave me a better understanding of why the course is in fact intense—besides learning as much as they can, teacher and students will work together to prepare to take (and pass!) the AP exam scheduled for next spring. It’s an important exam. Those who score 4s or 5s are eligible to earn college credit. I’m proud of Fiona for thinking she’s ready for such a challenge. If she can follow the extensive list of requirements and meet the expectations that her teacher described, I have no doubt that she will do well.
Over the course of the evening, I was given a few more syllabi to read. They were not as detailed as the AP course syllabus was, but Fiona’s teachers were thorough in presenting their class goals, assignments, and expectations. Half-way through one session, I thought to myself, if only autism parents had a syllabus. If parents knew exactly what to expect and when, imagine how much easier some of life with autism could be…
Course: Life With Autism
Course Description: The Life With Autism course is an open enrollment course. It begins as soon as you find it necessary and will remain open and available with no predetermined end date. The course focuses on the affects autism has on the individual and those closest to him/her. Topics covered include typical behaviors, typical struggles, and typical situations an individual with autism will experience. Students in the course will use a variety or resources such as books, journals, and the Internet. As each person brings a unique set of gifts to the class, you may also be asked to be a resource. Anyone who is caring for a child with autism may enroll in Life With Autism. This course is geared toward parents of children on the autism spectrum, but anyone who is teaching a child on the spectrum or who is providing therapy to an individual with autism, and anyone who is curious about the spectrum disorder, may also enroll. Since autism can be quite costly, the fee for this course has been waived.
Location: There is no designated classroom. Students will learn and experience autism wherever they or their child may be – at home, school, church, and assorted community settings.
Scheduled Class Time: 24/7
Instructor: Various individuals will instruct you on how to live Life With Autism, but your child will be your most important teacher.
Course Outline: Life With Autism topics include, but are not limited to:
Autism all day long
Causes of autism and why it matters
Medical, educational, social, and emotional challenges explained
Navigating the system
Appropriate autism therapy and treatment options
Funding a potentially life-long disorder
Autism advocacy in the community and at the legislative level
Effects of autism on the family
Caring for the autism care-giver
Teach the teacher*
*Time will be set aside during each class for students to share what’s worked for them/their family. Be it sharing the name of a welcoming provider, celebrating a praise report or venting about an ongoing frustration, we value your input and encourage you to share what’s on your mind.
Textbooks: Life With Autism affects people differently. Others know that and have offered their perspective in books as well as on blogs and in documentaries. We will explore those together as well as ask students to stay updated on autism as much as they can on their own. Throughout the course, we will present books on many topics such as autism and dietary intervention, autism behavior modifications, special education and autism, and the fact that autism is medical. As the autism rate skyrockets, we believe that more books will continue to be written on the subject. As new books are published, students will review current titles as well as pick specific ones already available that touch on your child’s specific autism needs. We suggest that you buy whatever books you believe will assist you. For those struggling to make ends meet, a lending library is available.
Supplies: Please always remember to have the following on hand:
An endless supply of grit.
More than enough determination.
All the patience you can muster.
As much peace as you can find.
And never forget how to multi-task.
Grading: On some days it may feel as if you have failed, but the Life With Autism course is distinctive in that we do not Pass/Fail students nor do we take grades.
Assignments: A typical course includes classwork, homework, projects, and tests. That work is usually prepares students for a final exam. Despite the hard work and challenges each of you could will face while experiencing the Life With Autism course, a final exam does not exist. That should not dissuade you from learning as much as you can. That’s because those participating in this course will be required to constantly read, review, and be prepared to discuss several aspects of autism at any given moment.
Attendance and Absences: Those with autism do not get a day off. So, barring death, attendance is mandatory for students in the Life With Autism course.
Suggested Help: Depending on your child’s unique needs, you may find more than a few resources available. Should students require specific assistance beyond what this course and has offered, do not hesitate to contact another autism parent in the community. We believe that parent-to-parent networking can be the best method to gain insight to both local and national resources. The wealth of knowledge that parents possess is priceless and beyond what any textbook could ever cover…
Ahh, one can dream, right?
I snapped myself out of my daydream as I waited for Fiona’s next teacher to begin her presentation. Before the presentation, I read that class’ syllabus. Another very detailed document, it again reminded me how Life With Autism does not usually follow directions. It does not fit neatly into a course outline. It does not follow a set path and is not always easily navigated – what works for one child or adult will not work for another. That isn’t a bad thing. It just means that those who are working with that particular child or adult must find a different path.
With how very different some children are, it may take creating an entirely new path for each child. That can be overwhelming. Thankfully, even though the Life With Autism course I described above is just a figment of my imagination, parts and pieces of it do exist – the many books, the countless blogs, magazines and journals, and the helpful documentaries. Those are all readily available now. More importantly, so is lifesaving parent-to-parent networking that I mentioned.
For those who do struggle with autism and for those who wish it could just be a tiny bit easier, I will encourage you to find another parent. Talk to them. Listen to them. Learn from them. And never be afraid to ask for help. I know many parents who will gladly lend not just a book or helpful website; they will lend an ear to listen, a hand to help, and always more than enough hope to get a family through whatever life with autism brought them.
Cathy Jameson is a Contributing Editor for Age of Autism.