Your Opportunity: The Freshman College Experience

This post is by Autism College’s  first guest blogger,  Kerry Magro, who was diagnosed with PDD-NOS at age four. Now as an adult who has autism, he is a recent graduate of Seton Hall University’s prestigious Leadership Development Honors program, majoring in Sports Management. In 2008 as a college sophomore he started the first Student Disability Awareness club in Seton Hall’s history to help spread awareness and raise funds for those affected by autism and other disabilities.*

Here’s the scenario: You’re a college freshman. You’re on your way to THE higher learning experience of a life time. There is a catch though. As an individual with autism going into college you are in a distinct unknown class which is both good and bad. If you look at some websites today you may see how many people go to college from a certain race/demographic. With a learning disability though, especially autism, we don’t know the numbers of who’s going to college today and who’s not. What we do know is that an estimated 500,000 people with autism will become adults within the next decade. This means that your story, through your college experience, can inspire so many.

With so much still unknown it means that many people are still unaware of autism at the college level. Granted some programs know what they are doing, many still have a very long way to go. I can tell you though my life has changed so much because of my college experience with autism. When I was 4, I was diagnosed with pervasive developmental disorder- not otherwise specified (PPD-NOS). Almost 18 years later I made my dreams come true by receiving a diploma from Seton Hall University. I went through so many challenges to get there but because I faced those challenges I’ve become a stronger individual by far. Because of the uncertainty, it’s how you prepare now which will ultimately be all the difference in your college experience.

So where do you start? Many of the steps are very basic and most of them involve just one word which awareness. The steps that I tell people through a few blogs I’ve wrote is broken down into these…

  1. Making sure you understand who the faculty members are for your program (director, disability specialist, etc.)
  2. Understanding what accommodations they offer (extended time on tests, private rooms for exam periods, individual note-takers, etc.)
  3. Finding out if there is a disability support student organization (important in regards to making sure students have a “voice” and community that can promote acceptance and diversity).

Ideally these steps will put you ahead of the game. Still you will need to have a strategy for how to assess your Individualized Education Program (IEP) in College. I was the unfortunate soul who realized 2 weeks within college that I no longer would have an IEP. No one ever told me that my IEP would be stripped away, even during my exit interview. As I know this is August you can’t just go back to High School and do this but I would take any and all notes you have from your exit interview from High School and assess where you are as a whole. Find out what your strengths and weaknesses are and then after you figured that out what accommodations they offer (step 2 above). I would suggest doing all of these steps with a parent/guardian as well to make sure you don’t miss anything while going through the trials.

Other Mentions I usually tell people are:

  • Prepare to self-advocate. Many schools will make you sign a paper before they let parent involvement happen and even then they push independency.
  • Figure out whether you would feel comfortable living in a college dormitory. With proper documentation, you can ask for a single room to make your transition easier!
  • Speed Reading Courses (many are available at college institutions for students of all ages around the U.S.! You can also look for online video instructions, such as the one here)
  • Asking for a learning buddy (an upcoming sophomore to help show you the ropes)
  • Maintaining healthy reading and exercise habits (30 minutes a day for each) to keep the mind sharp in the summer
  • Reaching out to local and national autism-related organizations (such as the Autism Society and Autism Speaks) to talk with experts in regards to self-help and support groups.
  • Buy a SMARTPEN!

Finally, my last word of advice is to have fun! Many people say college is the best time of your life and it really can be if you let it. Remember, autism can’t define you, only you can define autism. At the same time PLEASE remember to give back. As I said, you’re voice is the key to our autism movement. So many famous people with autism today are much older and to promote forward progress we need new generals and new voices to come to the front and join in. Because Autism in college is still unknown a college education could very well be that first step…

* If you would like to contact Kerry  directly about questions/comments related to this post, he can be reached at his Facebook Fan Page or at kerrymagro@gmail.com. Please feel free to read his other college post which references some of his work in this post from The Autism Society of America here  (scroll down the page) along with his Autism Speaks college blogs here.

“Geek Dad: Awesomely Geeky Projects and Activites for Dads and Kids to Share” Free copy available

Geek Dad book

I’m not trying to out any Geeky moms or Geeky dads for that matter (notice I haven’t mentioned autism or Asperger’s Syndrome). But I couldn’t resist posting this – my publisher offered to send a free book to  a person of my choosing –  and I thought it would make a great present for winter break – lots of time to try stuff out, right?

I am not considered a Geek, yet I have always loved cool activities to do with my kids. I have always completed activities, they just never looked or turned out the way they were supposed to.  Let’s face it, I’ve always been a geek wannabee.  This book, Geek Dad: Awesomely Geeky Projects and Activities for Dads and Kids to Share by Ken Denmead speaks to the inner geek in all of us. Ken is the editor of GeekDad, a blog on Wired magazine’s Web site.  A professional civil engineer, he lives near San Francisco with his two sons, who are both geeks in training.

Here is a great book and I can send you a free copy. Just write a comment below (or send me a private email if you are too shy) within the next 48 hours, and I will pick one of you to get a copy from the publisher for free.

Meanwhile, here is  an  activity from the book – making coloring pages:

Because there are levels to artistic ability and interest, I’ll show you two different coloring pages you can make. First, the classic dot-to-dot, then coloring sheets. They are all made from images you can find online or scan into your computer from sources at home.

Dot-to-Dot Coloring Page

To start, you have to pick the image you want to turn into the coloring page. For dot-to-dots, it’s going to be a lot easier to select simple images, though if you’re patient and want more detail, you can go for the gusto with more detailed pictures. But dot-to-dots are great for younger kids who are learning about staying within the borders. And they love to be amazed by what they can create by drawing a series of lines between dots.

For this example, we’re going really simple—an image of the sigil of the Rebel Alliance.

(Advisory: If you are reasonably experienced with graphics software and know what a layer is, you can skip down a couple of paragraphs to the one that starts “Select a pen . . .”.)

Assuming you’re a geek, we are going to figure you have some manner of graphics software, probably for touching up pictures from your digital camera. Common (and pretty good) examples of such software include Photoshop Elements (the cheaper, easier-to-use version of the industry standard Photoshop) available on Mac or PC; Pixelmator for the Mac; or GIMP, which works on PC, Mac, or Linux and is FREE FREE FREE. Maybe you haven’t played around with the software that much. If that’s the case, here’s a quick lesson about the first feature you’re going to use.

A layer is a standard concept in image editing software. Conceptually, it’s very simple. Imagine if you took a printed picture and laid a piece of tracing paper over it, and then copied the features by hand on that tracing paper. Well, a layer is just like tracing paper, only it works digitally on the computer, and you can have as many of them as you want.

Step 1: For this project, you open your base image in the editing software of your choice. Then you  add a layer. Most of these pieces of software have a menu actually called “Layer” from which you can “Add a Layer.” Once you’ve done that, there is a perfectly transparent layer of digital tracing paper on top of your image, upon which you can now trace, without affecting the original picture.

Step 2: Select a pen or pencil tool and a fairly small brush size to make your dots with. Draw black dots all around the edges of the image, at relatively even intervals. Straight lines need only one dot at either end. Curves need more so that, when they are connected, they will better re-create the curve.

Step 3: These programs should have a separate control window that shows all the layers in the current project. From this window, you can now “turn off” the layer with the original image on it so that you see only the dots.

Step 4: If you want to go all the way, you can also use the program’s text feature to add numbers next to each dot to give your artist a sequence to follow. Or you can just save this file and print as many of them as your kids want to color, letting them be creative and decide how to connect the dots.

Coloring Book Pages

Obviously, older kids and those with more advanced coloring skills are going to be hankering for something a bit more challenging than connect-the-dots. What’s great is that these graphics programs have filters that let you kick out coloring pages by the ream with only a couple of clicks. They require even less work than the dot-to-dots.

Pick an image. For this example, I used a snapshot I took of my classic Nauga (http://www.nauga.com/promoitems_nauga.html) in my office. I opened the image in Pixelmator and then used “Filter-Stylize-Line Overlay” to automatically find the edges in the image and drop everything else out, making a perfect coloring sheet (there are settings you can tweak to get it “just right”).

In Photoshop Elements, the process is nearly as easy. Open the image, and use “Filter-Stylize-Find Edges.” Then use “Enhance-Convert to Black-and–White” to drop out the colors, and you have much the same effect.

In GIMP, you can try “Colors-Desaturate,” then ”Filters-Edge Detect-Neon” and “Colors-Invert” to get a similar effect. You may need to play with some settings to get an optimal result (and you can save those settings for future uses). GIMP is just as powerful at the other programs in many ways, but it is not quite as user-friendly, so there’s a bit more of a learning curve.

Once you have the technique down, you can whip these out en masse and build your kids (or get your kids to build) their own coloring books, using images they find online (Google Image Search is excellent for this, though make sure you keep an eye out for inappropriate content; or try the Web sites for the cartoon shows they like—Disney or Nickelodeon) or scans from other books or sources.

One other way to do this—with slightly less creativity (and therefore less geek factor) but without the need for special software—is the Coloring Page Maker at the Crayola Crayons Web site: http://play-zone.crayola.com/.

Putting Yourself First

This past week, I finally made it to the RoadRunner store to buy a pair of running shoes. I have not been getting my normal amount of exercise (walking or elliptical, plus core strengthening) and I was feeling it. Lethargic, less energy and putting on weight. And when I did exercise, my sneakers were so worn I was worried about my back and left right knee (go ahead and laugh if you are under 35, you’ll soon understand what I’m talking about….). I knew it had been a while since I had bought a new pair – but when I got to the checkout – I was told my current sneakers were purchased in July 2009. YIKES!

How did I let exercise – the one thing that keeps me healthy and sane (OK, maybe not sane but at least behaving appropriately in public settings) slide off my schedule?

Upon reflection, what has happened in the last two years is that I had put myself on the bottom of both the “scheduling support people for Jeremy list” and  the “to-do list.”  Parents and educators,  you know what I mean – you all do it. When you have special needs children your life can get swallowed up by your child’s or student’s needs.  I have been squeezing in my writing (ie paid work), my socializing (ie refreshing my social skills) and my exercise (ie keeping healthy) around Jeremy’s needs and everyone’s schedule.

I often tell parents and educators  during my presentations that they have to take time for themselves. Like the cabin crew tells you on the plane – you have to put your oxygen mask on first before you can help anyone else. Same goes for real life. If you don’t take care of yourself, no one else will, and you won’t be  any good to anyone else. So please, do as I say and not as I  have been doing.

Now, I’m putting my priorities first on the schedule. Everything else is secondary. (At least till the new shoes get a little mileage on them).

Back to School 101: Tips for General Education Teachers About Students with Asperger’s Syndrome

This is from my Psychology Today blog published September 9, 2010

Often junior high and high school teachers have teenagers with Asperger’s Syndrome (AS) included in their classrooms, and are not given much in the way of useful information. Here I hope to provide a few practical tips that may be helpful to educators with no practical knowledge about students on the spectrum.

Parents, you may wish to print this out to give to your child’s teacher, or send them the link. There are only a few tips here, but usually teachers are receptive so practical information that may help them to understand and reach their student.

Asperger’s or High Functioning Autism (HFA) is often described as an ‘invisible disability’ because students on the spectrum do not look different frorm most students. Most teachers expect them to act like everyone else, but often the student gets in trouble for behaving in a way that seems rude, disruptive or non-compliant. A diagnosis of Asperger’s or HFA is based on challenges in the areas of communication, and social relationships, as well as what appears to be an obsession or passion for a particular area of interest.

Here are some tips that may help the school year go a little easier for you and your student on the spectrum:

* It’s a good idea to have a hard copy of the homework assignment to hand to your students on the spectrum, because most of them are mono-channel, meaning they have only one other processing channels (auditory or visual) working effectively at one time. This means they cannot look at the assignment on the board, write it down and still be able to focus on what you are saying. By the time they have finished copying down the assignment, they have missed your intro to that day’s lesson. This mono-channel aspect makes it hard for a student to multi-task, and by only requiring him/her to do one thing at a time, it will be much easier for the student to be focused on the day’s lesson.

* The student with Asperger’s or HFA usually takes things literally – this is part of the communication challenge. For example, if you address the class by saying “Please turn to page 12,” expecting the students to start doing the work on that page, the Aspie student may turn to page 12, and then just sit there, awaiting further instruction. Meanwhile, you may think he is being a smart-aleck, but I assure you, he is not. You need to say “Please turn to page 12 and write the answers to question 1-5 in your notebook.”

* This taking things literally means that also the student may not understand all the nuances of language or social customs, what we call ‘hidden curriculum.’ Think of what it is like as a foreigner in a new land and how they need to be explained the local customs- that is what it is like for a person on the spectrum.

* Students on the spectrum are often described as being obsessed with a particular topic or subject, for example, space travel, buildings, certain types of music, transportation. Actually, being passionate about a topic shows an interest in learning. If you know what your student is passionate about, you can relate your lessons or subject in some way to his area of interest and your student will excel.

* Many students on the spectrum are overly sensitive to noise and crowds, making transition times between classrooms difficult. By allowing the student to arrive or leave a few minutes early or late, you will make it much easier for that student to arrive to class less stressed, and ready to focus on the lesson.

Students with Asperger’s Syndrome or HFA are usually very bright and eager to learn. Hopefully these tips will help the year be a more productive one for you and your student.

Back to School : how to prepare your teen for a new school year

It’s that time of the year again – school is starting up again soon, along with our hopes and expectations for a positive learning experience for our teens. Some maybe returning to the same school; others may be moving from middle school up to high school, or changing from high school to a transition program; others may only be changing classrooms or teachers. Whatever the situation, any type of transition or change can be stressful for a teen on the spectrum. The start of a new school year can also be stressful for parents and teachers.

I first posted this article on the Examiner.com last August (2009), but it is still useful information so I am reposting now.

On August 15th,2009, I presented at the annual “Back to School”  Autism / Asperger conference in Pasadena and had the opportunity to refresh my memory on some good readiness skills for the start of the new school year. A2Z Educational Advocates based in Pacific Palisades had some good tips to share in a “Back to School Guide” they were handing out. Following are some tips from both the “Back to School Guide” and from my book Adolescents on the Autism Spectrum to help the transition go smoothly for your teen or student:

  • If  your student is moving to a new school or classroom, take photos or videos of the new environment, including the areas he/she will be walking through. If possible, take the teen to the new location before school starts and practice walking around the empty campus. Have him /her notice some visual landmarks he/she  will be able to see when the campus is full of students, and explain to him/her how to use these as points of references when walking from one place to another.
  • Prime your teen by talking to him/her  about the upcoming school year, the teacher and expectations, as well as any fears or concerns your teen has. Creating a photo album together or writing social stories can be very helpful. Even if your teen does not have good communication skills or is non-verbal, he/she can  learn to  understand and make the connection, so it is worth the effort to take the extra time to do this. Going over the appropriate behaviors and social interaction for the school environment can also be helpful. Many students find having a set of ‘rules’  for school behavior helpful. Focus on the positive!
  • Help your teen get organized to prepare for the school year.
  1. Use color-coded folders to organize the work for the different classes.
  2. Get a planner for your teen. Many schools have a homework planner, and your teen can use this to keep track of homework assignments. Show him/her  how to write his assignments in the planner and reinforce him/her  for doing so through out the school year.
  3. Designate a spot in your teen’s backpack for forms, notes and so on that come home from school, and make sure your teen and the school staff know where that is.
  4. If your teen is fully included in a school that follows block scheduling such as in some North San Diego County high schools (one day is periods 1,3,5; the next day is periods 2,4,6) you may wish to consider having two separate backpacks for the two different block days days.
  5. If your teen needs assistance to organize himself and stay organized (as mentioned above), his / her IEP may need to include accommodations, strategies, and goals related to learning these skills. Being able to get and stay organized is an important life skill everyone needs to learn

In my next column, tips on how to make the transition back to school easier for parents and teachers will be discussed.

“THE STATE OF THINGS” North Carolina Public Radio station WUNC

Click here for a link to the radio show

The program is “The State of Things” on North Carolina Public Radio station WUNC.  Longtime NPR correspondent Frank Stasio hosts the program, which  this time  focused on autism.

The way Franc Stasio introduced me is a description I think describes what all autism moms and dads tend to be – strategists:

“… Jeremy is almost 22 now and  he is thriving thanks to an army of experts whose chief strategist and leader of the troops is his mother.” Frank Stasio, host of radio show ‘The State of Things” on WUNC, North Carolina Public Radio, April 2010.

I was on a panel that will include  Autism Society of North Carolina  spokesperson David Laxton; and a representative of the North Carolina TEACCH program, and Daniel Coulter.  TEACCH stands for “Treatment and Education of Autistic and related Communication Handicapped Children” and is associated with the North Carolina School of Medicine.

How to Teach a Child or Teen with Autism the Concept of Waiting

There are a few things in life that are certain: paying taxes, death and waiting. No matter who you are, part of your life will be spent waiting. Unfortunately, the “waiting” concept is not one that is picked up by osmosis for many children  on the spectrum. Hopefully, they will have learned this concept  by the time they are teens, but I’m still including it in this column because it is a necessary life skill everyone needs to learn – on and off the spectrum. We all have to wait in line at the grocery store, wait at the doctors office, wait for a turn on our favorite ride at Disneyland, wait at the restaurant for our food. Children also have to learn how to wait  at holiday events,  when traveling, at home for things they can’t have right away or to go out for a ride in the car. As children grow into teens and become more responsible for their behavior, waiting is definitely a skill they will be expected to use in the community.

Teaching the concept of waiting

waiting

Here’s one way of teaching the concept of waiting:

  • Make a nice- sized (4×4 or bigger) picture icon that has a figure sitting  in a chair, and the face of a clock on it. Put it somewhere convenient and noticeable, such as the refrigerator.
  • Glue a piece of velcro  on the big icon for putting a smaller  icon of requested item on it.
  • Have a timer available.
  • Have small icons of the child’s favorite items that he likes to request.
  • Have those items (food or toys) within his eyesight but out of his reach (but easily within yours).
  • When child asks for item out of reach, show him the corresponding icon, place it on the bigger waiting icon, and say “we are waiting” and set timer for whatever his capability for waiting  is at this point (10 seconds, 30 seconds, 1 minute).
  • As soon as the timer rings, give him immediately the requested item. Tell him “We are finished waiting.”
  • Do this many times  whenever the opportunity arises and extend the amount of time until the child can wait longer and longer.

Each child is different in how long this will take or for how long he can learn to wait (and this will change as well over time).  Eventually when he is asking for a ride in the car and you can’t go right away, you can tell him “Not now, in 10 more minutes your sister will be ready. We are waiting,” and he will get the idea that he may not get what he wants now, but he will get what he wants eventually. This will lessen his frustration, and subsequently, yours.

Temple Grandin and Jeremy Sicile-Kira to Keynote on-line Autism Conference

No-Cost Virtual  conference and new book highlight Autism Awareness month.

In honor of Autism Awareness month, momsfightingautism.com is offering a free virtual conference with 17 different presenters over two days on Saturday, April 10th and Sunday 11th from 8:00 to 5:00 PST.

Temple Grandin, PH.D., subject of the recent HBO movie: Temple Grandin starring Claire Danes, will be the keynote speaker on Saturday April 10 at 8:00 am PST. Dr. Grandin is a designer of livestock handling facilities, Associate Professor of Animal Science at Colorado State University and a bestselling author (Thinking in Pictures). Dr. Gandin will be discussing Teaching Through Specific Examples, and will also discuss the Importance of Sensory Processing Disorder and it’s place in the DSM V which is currently being updated.

Temple Grandin and Chantal Sicile-kira

Acknowledging that autism is a spectrum with different abilities and challenges, the keynote on Sunday April 11 at 8:00 am PST will be given by Jeremy Sicile-Kira who was highlighted in the MTV award-winning True Life episode, “I Have Autism.” Jeremy will present on Learning With Autism: A Personal Viewpoint using power point with voice output. “Jeremy has experienced home schooling, special education and inclusion, and many types of therapies in California, France and the UK. It’s not often we get to hear from someone as impacted as Jeremy about what it is like to be on the receiving end of therapies and treatments,” explained Chantal Sicile-Kira, autism advocate and award-winning author who will be moderating both keynote presentations. Her latest book, 41 Things to Know About Autism, has just been published by Turner Publishing. Continue reading »

Autism: It’s A Family Thing

The Sicile-Kira Family

Autism: It's A Family Affair

This article was posted on my Psychology Today Blog, The Autism Advocate , on March 26, 2010.

A couple of years a go I was asked to write an article on The Affects of Autism in Families and in Partner Relationships,  for the May/June 2008 issue of  Family Therapy Magazine.  Lately I have been getting emails in regards to autism and marital stress, and I thought I would reprint part of the article here, since the information is still valid. If you are interested in this topic, you may wish to read the chapter on  the financial and emotional stresses of autism on the family that appears in my new book 41 Things to Know About Autism (just published by Turner Publishing).

Family life is all about relationships and communication: relationships between two people in love, parents and children, siblings, extended family members. Yet, autism spectrum disorders (ASDs) are all about communication challenges, misunderstanding of social cues, and lack of emotional understanding, thus affecting every relationship in the family. In marriage, if one of the partners is on the spectrum, there will be more difficulties than the usual marital conflicts. Sibling issues are exacerbated by having an autistic sibling and/or a parent on the spectrum. Communication and social challenges can also impact the adult’s work situation. Grandparents are concerned about the effects of autism on their adult children (the parents), other grandchildren and future generations. Continue reading »

One Small Step Towards Self-Regulation

How to teach your teen with autism to request a break

Self –regulation is a needed life skill  not practiced  by most teenagers. Often teens on the spectrum need sensory breaks to help them self-regulate, yet some are unable to communicate the need for one. If you are a parent or an educator, you may want to consider teaching the teen to request a break using a “ I need a break” card.

Let’s  say you have a student that you work one-on-one with for a one hour slot of time. Every time you sit down to work with him, after about 20 minutes he gets up and leaves the worktable and there is no holding him back.  What you need to do is teach him to communicate to you when he needs a break,  and allow him  to have  those needed breaks within reason.   Here is one way to do that: Continue reading »