Anyway, in the hope of helping other parents in a similar position (criers or not!), I am dedicating this series of blog posts to ways to make the most of your child’s IEP process.  I’ve received a number of comments and questions on my blog regarding IEPs, so I know I am not alone in my feelings.

A good IEP is a vitally important support for your child’s future, but the entire process is confusing, fraught with emotion, and bounded by fears that even though your child is counting on you, you might not be up to the task. With so much riding on it, no wonder parents feel so daunted, anxious and overwhelmed!  Maybe a few of these suggestions will help.

Be forewarned – this is going to be a long post.  This is an important topic with a lot of ground to cover….  So as not to overwhelmed you, I’ve broken the subject into several posts.  This first post in the series focuses on the up-front legwork needed to help the IEP process go more smoothly.  So, grab a cup of coffee, take the phone off the hook and settle in…

Does Your Child Need an IEP?

You know that your child is struggling and needs help….The very first thing you must do is determine whether or not your child needs services from the school’s Special Services, or if other paths might be a better approach.  Here are a few questions to ask yourself objectively:

1.  Must your child’s needs be met during school (i.e. academic support, resource room, etc.) or might they be better met in another setting, such as tutoring at home, physical therapist (PT) at the clinician’s office or social skills in a group setting? (Finances, of course, play into this equation, since many times medical insurance doesn’t [fully] cover these types of services…)

2.  So, you’ve identified that your child needs help during school.  Now, can these needs be met within General Education, instead of Special Education?

• My advice would be to try more direct methods first, by working directly with the General Education teacher and Guidance Councilor.  Together, you may be able to provide additional supports, behavior modifications, etc. within the general education classroom that would not require that your child to be officially ‘classified’ within the Special Education department.  For example, teachers will frequently spend extra time with a child who needs extra help.  Small group instruction (pull-out/resource room) may also be available for specific subjects.
• The school may decide that a formal Intervention and Referral Services (INRS) team meeting is required to discuss your child’s needs and possible interventions.  This can be a good thing, as it formalizes your child’s issues and any agreed upon interventions.

3. You’ve identified that your child needs help during school, but the unofficial assistance or INRS interventions are not sufficient. Is your child eligible for Special Services? To determine this, you must formally request (in writing) that your child be evaluated by the Child Study Team (CST) of your school or district.  The CST is made of up two or more certified personnel, including the school psychologist, learning disabilities teacher and social worker.  This evaluation will assess your child functionally, academically, behaviorally and psychologically to determine where any issues or deficits exist.  The evaluation will be based on standardized testing, observations, interviews and a review of developmental and educational history.

• A specific diagnosis of your child’s problem(s) by an outside doctor or professional may be helpful, but it is not necessary.  The IEP eligibility determination is based on academic performance and behavioral issues at school, with or without a formal diagnosis.
• In any case, don’t wait to obtain a diagnosis report from your doctor before requesting the CST evaluation.  The process takes several months to complete and the school is not required to accept an outside diagnosis or recommendation.  The school may in fact, decide to hire its own doctor to conduct an assessment during the evaluation process.

Special Note:  If your child’s teacher or Guidance Councilor is the one who raises concerns and recommends an evaluation, be open to hearing a difficult ‘truth’.  It may be a shock to you, or you may already have had concerns of your own, but it still can be hard to acknowledge that your child is struggling.  It won’t help your child for you to deny that their difficulties exist, so stay focused on your child’s best interest.  Keep in mind that teachers see many children over the years, so they can be more objective about identifying when problems exist.  They also see your child in a different setting and circumstances that you do.  It doesn’t mean the teachers/councilors are always correct, but it is at least worth listening to their concerns and perspectives.

On the plus side, if the school suggests the evaluation, you are much less likely to have a battle on your hands to get the help that your child needs.  And rest assured, no evaluation may be conducted on your child without your written permission.

Preparation

So….you’ve decided to pursue an evaluation by the CST.  Now it is time to do your homework!  To make the most of the IEP process, it is vital that you do adequate preparation.  You are the expert on your child and must stand as his staunchest advocate.  So, be sure to cover these following steps for the best outcome for your child.

1. Understand your Child

Take time to really understand your child’s strengths, weaknesses, personality traits and interests. Be specific about your goals and desired outcomes.  It is not enough that your want your child to be ‘happy’ or to ‘reach his full potential’.  You need to have concrete goals, such as ‘read at grade level’, ‘ interact appropriately with peers’, etc.  A great tool to help parents with this soul-searching step is Hopes and Dreams – An IEP Guide for Parents of Children with Autism Spectrum Disorders, by Kirby Lentz, Ed.D.

2. Educate Yourself

To adequately prepare yourself for the challenges ahead, you need to do your research and educate yourself as much as possible:

• Know your rights, understand the law and learn the process.  The school has a set of rules and obligations that it must abide by.  It is vital that you know what those are, so that you can work within them.  We live in New Jersey, so I will reference those documents, but each state will have its own similar version.  You may request these documents through your school, or you may view them online.
  • New Jersey Administrative Code, Title 6A Chapter 14, Special Education
  • New Jersey Department of Education, Parental Rights in Special Education (PRISE)

• Talk to others.  Many parents and professionals have been through the experience with Special Education and the IEP process before you.  Glean as much information and perspective as you can from those who have already gone through it.  And don’t limit yourself to just parents in your district.  Parents from other towns and even other states can provide valuable insights, as well as potential alternative approaches/services.

• Go Off-the-Record. If at all possible, talk to your child’s teachers and administrators privately.  In so doing however, keep in mind that these individuals have a necessary allegiance to their employer (the school district) and may not be in a position to make official suggestions or recommendations.  Respect this and try to elicit open, honest dialogue by speaking off-the-record.  You can gain valuable insights into your child, available services and the system in general, from someone ‘on the inside’.  Be sure however, to always honor the ‘off the record’ status and never quote or reference those private discussions (or you’ve just burned that bridge for the future – yours and any parent following you…)

• Read books and websites. Learn as much as you can about your child’s specific issues and the various therapies that are available.  Learn the process, lingo and abbreviations used within Special Education and the Autism community (or other disability), so that you may speak knowledgeably like the professionals.  A good resource for Special Education in general is:  Parents’ Complete Special Education Guide – Tips, Techniques and Materials for Helping Your Child Succeed in School and Life, by Roger Pierangelo, Ph.D. and Robert Jacoby.  Some good Autism/Aspergers websites include:  ASPEN, Autism Support Network, and WrongPlanet, but many others exist as well.

• Attend Seminars. Many Special Education parent advocacy groups (such as the Statewide Parents Advocacy Network (SPAN) in NJ) offer free IEP seminars to parents.  Autism support organizations frequently offer seminars and conferences throughout the year – on all sorts of related topics – so be sure to get on their mailing lists.

3. Plan Your Strategy

Ok, now that you have fully educated yourself about your child, your rights, the process and the available therapies, it is time to strategize.

• Be Realistic and Flexible in your Demands.  Yes, you want the world for your child, but be realistic about how much your child can reasonably handle at one time.
  • Focus on your top priorities at this point in time.  Priorities shift over time, as your child develops and his/her needs and issues change – and so can the IEP….it is not carved in stone, and may be modified at any time.  Identify a list of ‘ nice to have’ services.  These are not your top priorities, but if you school is willing to provide them, then great.  If not, you at least have a bargaining chip.
  • By understanding what services are in place and readily available within your district, you may be able to work within the system to meet your goals…maybe not all, but most.  Just because you heard about a great new treatment option that you are convinced will benefit your child, doesn’t mean that your school district will – or even can – provide it to your child.  The school is limited to a set of standard, proven and approved therapies (i.e. ABA Therapy).  You may need to work very hard to get a new therapy/approach onto this ‘approved’ list of services.
  • Be open to supplementing with services, therapies and/or supports outside of school – and to trying new approaches.  It may not be exactly or everything you were hoping for, but every little bit helps.

• Walk in Their Shoes. When negotiating anything, it is vital to understand the other side’s position, goals and constraints, so that you have a better chance of developing a win/win result.  In this case, understand that the school district has a different set of priorities and goals than you do.
  • Special Services is tasked with providing an ‘equal’ and ‘adequate’ education to your child and they are held to budgetary and administrative constraints dictated by the government, Board of Education and other bodies.  Schools do not have unlimited resources (manpower or funds), so they need to apply those resources judiciously to provide the most benefit to the most children.  (And as taxpayers, we want them to spend our tax dollars wisely, don’t we????)
  • Acknowledge that unlike you as the parent, the school is not looking (nor is obligated) to provide the ‘best’ education for your child.  You are concerned with helping your child be the best that he/she can be, but the school’s primary concern is that your child is educated to the established standards.

• Seek Support.  If you suspect that there may be some question about your child’s eligibility for Special Education, or if you are just not confident tackling the process on your own, consider speaking with and perhaps hiring an advocate.  Some districts/states automatically provide parents with an experienced parent advocate to facilitate the process, which can be an invaluable resource.

Initiating an IEP and dealing with Special Services can be overwhelming, emotional and intimidating, however with the appropriate preparation and planning, you can make the most of the process for your child. You can better understand your child’s challenges and work together with the school’s ‘team’ to meet your child’s needs most effectively – and that’s what I call a win/win!

Stay tuned for Part II of Making the Most of your IEP….

Related Articles

• Set an Education Course for a Child with Special Needs (blogs.forbes.com)
• IEP Meetings – Another round (ourordinaryday.wordpress.com)
• Hitting the Road – Will the IEP Come With Us? (everydayhealth.com)
• Tough Transition to Middle School (everydayhealth.com)
• The Never Ending Resource List For IEP’s (downsyndromenwfl.wordpress.com)

Any parent with a young child in the house will tell you that, at times, chaos reigns supreme.  Multiply the number of children by three (or more!) and chaos is a daily occurrence.  Complicate that equation with two boys being on ‘The Spectrum’ and life starts to get very interesting… supreme chaos is practically the status quo.  Welcome to Chez Houldsworth!

Before having kids of my own, I would shake my head in quiet disapproval as I observed mothers ‘giving in’ to their child’s public tantrums, or screaming at their child to ‘just behave’.   I would pull my nose up at dirty, snot-nosed kids, running willy-nilly in mismatched outfits, as their mothers looked away in quiet desperation.  Don’t these women have any pride, I would think to myself?  Can’t they manage their children? Not I….oh never!  I, of course, planned to have beautifully dressed, well-mannered, cooperative, bright, adorable little cherubs….someday….

Fast-forward some years, and I awoke to find myself over-run by three screaming, whining, fighting, hellions who are constantly demanding something – food, attention, toys, vindication, you name it….and leaving a trail of destruction in their wakes.  What had happened to my grand plan of perfect little angels?  I learned the hard way – never say never!

Don’t get me wrong, I adore our three kids and given the option, wouldn’t send any of them back (well, not today anyway…)  But, they do tend to play havoc with my carefully laid plans, try my patience with their ‘deafness’ and test my parenting skills with their challenges.

Truth be told, I’m not your laid-back type of person to begin with (my husband is nodding his head vigorously in agreement!), so dealing with this level of noise, chaos and disruption is like fingernails down a blackboard.  I struggle hard to pick my battles and as the popular book recommends – not sweat the small stuff….easier said than done!

Finally accepting that chaos is a natural part of our family life, I’ve recently adopted a new motto – “Embrace the Chaos”.  Rather than constantly fighting to tame the chaos, I now try to find the joy within it:

• Instead of sighing over the trail of art supplies left behind by my daughter, I try to envision her future as a budding Picasso.
• Instead of groaning over the books and papers strewn across my son’s room, I try to focus on the fact that he is an avid reader.
• Instead of moaning over that fact that my kids complain about the dinner I just slaved over, I try to appreciate that we are all together and have food to eat.

And of course, in the midst of it all, I also try to seize the rare moment of ‘zen’ for a quiet moment for myself, reading in the sun room.

For Gregory in particular, chaos can be extremely difficult to deal with.  As with most Aspies, sensory overload from the sights, sounds and smells of our daily family life – music, video games, shouting, vacuuming, etc. – can become very stressful. Add to that, an older brother who loves to tackle, touch and tease and a whiny, persistent little sister invading your private domain, and poor Gregory has his hands full trying to hold himself together.

But as stressful as family life can be for Gregory, I am convinced that our familial chaos has  benefited him as well.  It has forced Greg to build his threshold of sensory stimulation and increase his tolerance for frustration.  Family life has helped Gregory to adapt, as he is forced out of his comfort zone of quiet control into the fray of close social interactions and constantly changing situations.  Family disruption has taught Greg sharing and negotiation tactics, as well as the skills of reading social cues necessary to achieve a desired end.  In short, although he frequently retreats to the quiet solitude of his bedroom to decompress from too much ‘togetherness’, the ‘invasions’ of family life have also forced Greg to rise above of his Aspie tendencies and interact with life as it comes…maybe not on his terms, but on terms he can now cope with much better…

So, when chaos reigns supreme in your home, just stand back, take a deep breath, relax and ‘embrace the chaos’! The positive results might just surprise you too!  (And I’m willing to bet that Picasso’s house wasn’t exactly immaculate either…)

Related Articles

• How Rude! (asdhelp.wordpress.com)
• Embracing the chaos – build a fort in the living room (if you can find the living room) (dadventure.ca)

“Don’t be smart, Mister!” I scolded my then 8 year old Aspie son, after he back-talked me about something or other.  He looked at me, wide-eyed with confused uneasiness.  He knew from my tone of voice that I was angry with him, but he didn’t understand my words… (Don’t be smart?  Isn’t being smart a good thing?  What is wrong???)

As I watched his facial expression retreat from disrespect to confusion to worry, I realized that we were experiencing a breakdown in communication.  I stopped and considered my impulsive reprimand…  Ah ha!!!- Gregory was interpreting my words literally!  At face value, the idiomatic phrase “Don’t be smart” went contrary to my usual promptings, so naturally it didn’t make sense to him.

Like most Aspies, Gregory is naturally very literal and needs to be explicitly taught to recognize when an idiom or other figurative language is being used.  Once I explained that “Don’t be smart” is a figure of speech that means ‘Don’t be fresh’ (hmmm…ok, that’s another figure of speech….) or ‘Don’t be disrespectful’, then he understood.  My message got through  and he apologized for being rude.  My mission was accomplished with that particular communication ‘battle’, but I realized that we had yet to win the ‘war’…

The Hidden Curriculum – Part III – Figurative Language

As discussed in my blog series The Hidden Curriculum, Aspies and others with social-cognitive learning disabilities, can have great difficulty decoding hidden curriculum rules.  Figurative speech, and most especially idioms, fall into this category.

A life-long avid reader, I adore imaginative figurative language and admire writers who can incorporate it effectively into their writing to add color and interest.  Well written prose, with the help of ingenious figures of speech, can take a rather mundane concept and turn it into a memorable, thought-provoking ‘pearl of wisdom’.

As you may recall from your grade school English classes, figurative language contains images and comparisons.  The speaker describes something through the use of unusual comparisons, for effect, interest, and to make things clearer. Appealing to the imagination, figurative language provides new ways of looking at the world – adding richness and depth to our communication.

To refresh your memory, here are some common types of figurative language that we use on a daily basis:  (See how well you remember… I had to look a few of these up!)

As fun, creative and widely used as it is, figurative speech is not intended to be interpreted in a literal sense. And herein lays the problem….  It is common for young kids to take things too literally, but when this misunderstanding continues with age, it can create significant comprehension and therefore social issues.

Figures of Speech Game

To help Gregory develop his sense of figurative language, I created a “Figures of Speech” game that we played each night at dinner time.  I printed out hundreds of common idioms, such as “Quit horsing around”, “Roll with the punches”, and “Bite my head off”.  (An entire chapter is devoted to examples of Figurative Speech and Idioms in Brenda Myles’s wonderful book, The Hidden Curriculum, which formed the basis of my series on the subject.)  As we all sat around the table, one of the kids would read aloud a figure of speech from a little slip of paper and then everyone would try to guess what it meant.  Then I told them what it meant figuratively, including, whenever possible, how it originated.  We giggled about how silly it sounded when interpreted literally, so they could begin to recognize these types of phrases in daily life.

During the game, we would review sayings that we had already covered, to reinforce the learning process.  This time around, the kids usually guessed/expressed the figurative meaning correctly.  We also had lots of fun having everyone come up with other idioms, either from things they had heard or from their imagination.  We all enjoyed many laughs and the lessons got through, because nowadays, when Gregory hears an idiom on tv or reads one in a book, he’ll turn and inform me, “That’s a figure of speech!”

I am Tongue Tied

During a school book fair where I was volunteering, I came across a wonderfully silly kid’s book called  Even More Parts by Tedd Arnold (of Fly Guy fame.) Through the use of very cute cartoons, the author introduces all sorts of common idioms dealing with body parts – from head to toe!  Just imagine the literal illustrations of someone saying “I lost my head”, “I keep changing my mind” or “I am tongue tied” – hysterical!  I bought it immediately – what a fun way to ‘get’ figurative language!    I presented it to Gregory, who was instantly mesmerized by the cartoon pictures of a man who ‘sang his heart out’ (his red, beating heart falling onto the floor), and the boy who ‘went to pieces’ (his snap-together body parts strewn all along the sidewalk).  The book was a huge hit with all three of the kids, who giggled at the absurdity of the literal interpretations to these well known idioms, so I subsequently bought the complete set (Parts and More Parts!)  Kudos Mr. Arnold!

*  *  *  *  *  *  *

Today, as a result of our ‘Figures of Speech’ game, the Parts books and lots of general reading, Gregory has a well-developed sense of figurative language.  Even when he doesn’t understand exactly what an idiom means, he recognizes that the phase is not meant literally.  But even better yet, Gregory uses figures of speech himself – to add richness and creativity to his own speech and writing!

So, the next time your child becomes concerned for your safety because you are “just going to jump in the shower….”, you might want to consider a couple of these techniques too.  Comprehending idioms and figurative speech can pose real difficulties for those on the Spectrum who see the world through literal ‘glasses’, but with a little work and a lot of silliness, our kids don’t have to stay ‘out in left field’…

Related Articles

• The Hidden Curriculum (asdhelp.wordpress.com)
• How Rude! (asdhelp.wordpress.com)

It’s no surprise really…We are bombarded daily with articles and news reports about how vital sleep is for mood, as well as for health, learning and development.  So, we all agree that sleep is a great thing, but still many of us are unable to achieve that minimum daily requirement of zzz’s.  And children are no exception.

Right from birth, my son Gregory had difficulty settling himself.  Whereas his older brother Daniel had slept for four hour stretches his very first day home from the hospital, as a newborn Gregory woke up and needed to be cuddled, soothed and/or fed every hour.  It was exhausting (and helped produce some repeat performances of Medusa-on-the Rampage, BTW), but eventually we got him to sleep for as much as three hours at a time.

When Greg was 2 ½, we moved him out of the nursery, into his own room and into a ‘Big Boy Bed’.  (His sister Sarah was on the way and we needed the Baby’s Room for her….)  Gregory loved his new room, decorated with cars and trucks, but the transition was not an easy one for him.  (and in hindsight, we could have handled the change much better…live and learn….)  In any case, Greg continued to have great difficulty settling down for the night.  He would happily get ready for bed and eagerly pick out a book for Mom or Dad to read to him.  But after being tucked in and kissed good night, he would toss and turn for hours.

When Barry and I would head to bed several hours later, Gregory was often still awake, lying in his “Big Boy Bed” muttering to himself, unable to let go of the world and fall into peaceful slumber.  And when he did eventually sleep, it was anything but peaceful, fraught with restless dreams and late-night stirrings. He would awake crying frequently and I would repeatedly have to go in to settle him.

How do I know all this?  Well, Gregory’s room is right next to the Master Bedroom.  And that adorable red, bead-board “Big Boy Bed” that I had purchased to go with his charmingly decorated new bedroom, squeaked and creaked with – every – single – movement!    No, I am not exaggerating.  (Boy, did I have buyer’s remorse over that purchase!)  I am a very light sleeper, and I heard Greg’s bed ‘musical’ constantly through the night – night, after night, after night…

We tried many things to try to improve his comfort and thereby hopefully his sleep.  We put up side rails; we added a night-light; we surrounded him with pillows and stuffed animals; we put on sleepy ‘mood’ music; we tried a wave sound machine; we read ‘sleepy’ books to him; we even had his big brother sleep with him…All to no avail.  He continued to be a very restless, problem sleeper – and time went on…

Melatonin Supplementation

Shortly after figuring out that Gregory has Asperger’s Syndrome, I read that many people with AS suffer with these same sleep issues.  Apparently, children on the spectrum typically experience circadian rhythm dysfunction and abnormally low levels of melatonin.

I began to do research and came across a study in the Journal of Clinical Sleep Medicine on the use of the natural hormone melatonin to improve sleep of children with autism.  This study was a 4-week rigorously scientific trial, where either 3 mg of melatonin or a placebo was given to 18 children with ASD.  The study supported the efficacy of melatonin treatment for sleep problems, with minimal, if any, side effects.  Now this sounded promising!

I did additional research, OK’d it with our pediatrician and then set out on my own subjective clinical trial.  I decided to start with 1 mg of melatonin (as opposed to the 3 mg in the study), to try to find the minimal effective dosage.  I also decided to include my older son Daniel in the test, because due to his ADHD he too, has difficulty falling to sleep.  (Unlike Gregory however, Daniel sleeps like a log once he finally does fall asleep.  One time a carpenter was banging away, installing crown molding right outside his bedroom, and Daniel slept right through it all….)

At bedtime, I gave both boys 1 mg of melatonin and then observed the results.  On the very first night – success!  Greg and Dan both fell asleep within about 20 minutes, which was a dramatic improvement.  But even better, Gregory experienced a much more restful sleep.  He didn’t toss and turn, or wake up nearly as often throughout the night.  The next morning, both boys woke up normally, and did not show any signs of grogginess or other ill effects.  I was ecstatic!  Add one to the arsenal of sleep aids!

Massage Therapy

About this same time, I was speaking with a behavioral therapist who uses both music and massage therapies in working with autistic children.  She showed me some basic massage techniques to help reduce stress. (For example:  Press the palm of your one hand firmly against the person’s chest, while your other hand slowly and firmly slides down his back, from between the shoulders blades to the waist.)   We tested it out on Gregory…He loved it!  It seemed to calm and relax him, and I could actually see his shoulders dropping away from ear lobes as he de-stressed.  We began using therapeutic massage anytime Gregory started getting upset or overwhelmed and it significantly helped him to regroup and manage his behavior.

Seeing how well massage worked during stressful times, I decided to try it at Greg’s bedtime as well.  As part of his nightly routine, I would give him a back rub – using long strokes and firm pressure (not too hard or too light, which were both uncomfortable to him.)  As I massaged, we would talk a bit about his day and what the plans were for tomorrow.  Stroking his back, I would quietly ask him if he could feel all that TLC (which I had to define for him as ‘Tender Loving Care’) going from me to him.  He loved it – and so did I!  Best of all, it worked to improve his sleep.  As the tension melted away from his body through my loving touch, Gregory was able to go to sleep and stay asleep so much easier.  Add another trick to the arsenal!

Today, that bedtime massage is a well-loved ritual that we do each night – with all three of my kids!  Greg will actually come and ask me for his ‘special massage’ and it has become a very special bonding time.

Although I didn’t use a scientific approach or control variables in my ‘studies’, I believe that melatonin and massage both have had very favorable results in improving Gregory’s sleep patterns.  Together, they have helped him fall asleep more quickly and stay asleep longer, enabling him to enjoy a more restful, recuperative night.

After a few months, I stopped giving the melatonin at bedtime, to test the supplement’s true impact….and to my surprise, the benefits remained!  Somehow the improved sleep patterns of the previous few months had retrained Greg’s mind/body to improve his circadian rhythm function.  He had learned how to settle himself and was now relaxed enough to stay asleep.  I couldn’t be happier with the results and these days, we only rely on melatonin periodically, such as during travel or when sleep eludes him for some reason.  Even on an ad hoc basis, melatonin continues to work its wonders.

As a result of his improved sleep, Greg’s daytime moods and resiliency have improved dramatically too.  He is less stressed and is able to cope much better with the world around him.  And I’m happy to say – so am I!  I too, am sleeping better and Mrs. Medusa rarely makes an appearance these days – at least not due to lack of sleep! 

Here’s a link to another recent study supporting the use of melatonin for children with autism:   http://www.autismspeaks.org/science/science-news/more-evidence-melatonin-eases-autism-associated-insomnia?utm_source=social-media&utm_medium=E-speaks&utm_campaign=121611

Today, I am happy to share with you one of those moments – an opportunity for my son to show ‘what he is made of’ – and I get to look on, smiling proudly.  This post is dedicated to Gregory, the boy behind the blog…my muse for these scribblings and my inspiration for reaching out to other families with Aspergers in their midst.

In the video above, I interview Gregory – about this blog, about himself, about life with Aspergers and his advice for other kids with AS.  He may look fairly comfortable here, but two years ago you would never have recognized him.  He was a different child – a ball of stress, frustration and sadness, unable to be understood and very lonely.  Today, after coming to grips with the disorder and participating in various programs and therapies, Gregory is happy, out-going and really quite eloquent.

I provided Greg with the questions ahead of time, so that he could think about his answers, but these words are entirely his own.  And I couldn’t have said it better myself!  May you all see what a great person he is!

Signed,

One Proud Mama

Suffice it to say, I am in the minority when it comes to technological interest, but our home is filled to the brim with geekiness.  We may have only five people in the family, but we have 6 computers, PDAs, iPods, GPSs, gaming systems, tvs….and the list goes on…and on…  “Screen time” (defined as free time to play on anything with a screen, such as tv, video game, computer, etc.) is the most highly sought reward for my kids….who could happily spend hours each day glued to a screen (barely pausing for a potty break), if allowed.  (In reality, we limit ‘screen time’ to a maximum of one hour per day…and only after all chores and homework are complete.)   I stand alone in my disdain for electronics, succumbing to their power only at the insistence of my tech-evangelizing hubby.

So, I am both surprised and humbled to stand before you today as a technology convert and declare that the Wii game system has proven to be a huge boon to my Aspie son.  Yes, let me repeat that – I love the Wii!!!

From a very young age Gregory has been reluctant to attempt new things due to his fear of failure and/or the unknown.  (I have come to learn that this trait is quite common among Aspies, but of course, I didn’t know that then….)  Frequently, I would have to work so hard to coax him to try something I thought he would enjoy, whether it was a new piece of playground equipment, a new food, or a new activity, sport or game.  Many times, I would just have to force him into the new experience, grabbing hold of him as we both zoomed down a slide or ran through a sprinkler.  Sometimes his first response was positive, but mostly, after being forced to try something new, he would retreat to ponder the experience by himself.

Greg’s resistance was particularly strong when it came to physical things, like playing sports, sledding or riding a bike.  It seemed a bit like a chicken and egg dilemma…was he resistant because of poor balance, stamina and coordination, or did he suffer from these things because he was resistant to participate actively?  I couldn’t say, but assuming practice would help improve his skills and thus his attitude, we persisted in coaxing/forcing Gregory to keep trying all the great American past times…soccer, t-ball, basketball, swimming, tennis, etc….  These attempts had rather dismal results, to say the least, and Gregory continued to resist.

And then, the Wii entered our lives.  The kids received the Wii game system a few years ago.  Surprisingly, we weren’t among the early adopters in this case, because I had resisted bringing another ‘screen’ into the house to dominate our children’s attention.  But Barry’s geeky proclivities eventually won out.  The Wii appeared on Christmas morning to joyous acclaim and was played by one or another screen-obsessed person for the next 14 hours!  (sic).

For the most part, Gregory would stand back, closely observing the others as they maneuvered through the new interactive games, such as tennis, bowling, baseball, etc.  He wouldn’t actually participate himself, but was avidly participating vicariously, as he watched and cheered on his siblings.  When we finally talked Greg into trying one or another of the games, he would get frustrated and quit at the very first sign of ‘failure’.  We tried to encourage him, saying it would take some practice to learn, but he was not willing to persevere.

So, I was more than a little surprised when, a few days after Christmas while no one else was around, I saw Gregory playing baseball on the Wii.  “Hey, Greg…I’m glad to see you’re trying the Wii!” I said.  He looked slightly abashed, mumbled something and promptly exited the game.  I apologized for interrupting him and tried to talk him into continuing, but he refused.  What a shame…I was sorry I had mentioned anything…

So the next time I ‘caught’ him playing, I held my tongue – I had learned my lesson!  I pretended not to notice him there and carried on with my business.  He was in deep concentration, trying to learn the rules and the technique of Wii Baseball – on his own terms.  This MO continued over the next few days, with Gregory exiting abruptly, anytime someone commented on his game or had the audacity to try to join him in play.  Eventually though, he gained enough confidence to allow others to watch and even join his game.  He was still happiest playing on his own, but he came to tolerate when he had to share the game with his siblings.

And then, the most amazing thing happened…One day out of the blue, Gregory asked his Dad to come outside and play catch with him!!!  We were stunned, because for years Greg had refused to learn to throw and catch a ball.  When Barry was teaching Greg’s older brother Daniel to throw, catch and hit a baseball (without must finesse unfortunately, being a Brit who confused cricket with baseball ), he tried repeatedly, but unsuccessfully to involve Greg in the training sessions.  Gregory wanted no part of baseball.  He stubbornly refused to even try to learn, I believe once again, due to fear of failure.

But the Wii, that wonderful bit of technology, had enabled Gregory to gain an understanding of baseball in a fun, non-threatening way…a way that Greg could relate to using characters (Miis) that he created, but were not him.  These characters could fail, so that Gregory wouldn’t have to!  He used these Miis to show him the ropes, develop his skills and demonstrate how fun the sport could be, until eventually Greg was ready to try it himself in real life.

So that long-awaited day arrived and Daddy was only too eager to play catch with his son.  In spite of his virtual skills developed over weeks of playing Wii Sports, Gregory still struggled to learn the actual skills.  But the important thing is that he was at last willing to try….and willing to fail.  Today he is quite proficient at playing catch, although his form is rather unorthodox.  He’ll probably never be a great ball player, but he has developed new-found physical skills and emotional resilience as a result of this experience.

Greg has followed a similar road to learning the basics of bowling and tennis too.  He started playing these games in the virtual world of Wii and subsequently was willing to try them in the real world.  Better yet, as a result of these learning experiences, Greg has dramatically improved his willingness to try new things – of all sorts, from foods to books to activities…  That debilitating fear of failure or the unknown doesn’t seem to hold him back quite so much anymore.  And while he may never be a ‘thrill-seeking, rush-headlong-into-new-experiences’ type of person, today he is, at least, open to the possibilities.  All thanks to the Wii and its virtual world where learning by trial and error can be fun.

Technology – it’s a wonderful thing…sometimes….  (Just don’t tell my husband I said so!  )

The number one benefit of information technology is that it empowers people to do what they want to do. It lets people be creative. It lets people be productive. It lets people learn things they didn’t think they could learn before, and so in a sense it is all about potential.

- Steve Ballmer

Last fall, I attended a certificate program in Special Education and Autism at the local community college.  Gregory had been diagnosed with Aspergers Syndrome (AS) the year before and I was still actively trying to learn as much as I could about the disorder and treatments.  The course required that each of us interview an Autism Service Provider and prepare a presentation about their services. 

Gregory had been attending a therapeutic social skills group for boys his age at a nearby mental health center for about 6 months.  I knew that this center also serviced adults on the spectrum, so I opted to interview the director of the Adult Aspergers Services Group (who also happened to lead Greg’s AS group).  Happily, the director (Eve) was most willing to meet with me and discuss the services offered to adults on the spectrum.  So, I prepared my set of questions and set off for the interview, feeling upbeat and studious.

During our discussion, Eve informed me that this group (adults over 21, with AS, High-Functioning Autism or PDD-NOS) is very under-served, with some people having to travel over two hours to participate in a program because nothing closer is currently available.  Most of these individuals had not received any type of services as children and had been misdiagnosed, if diagnosed at all.  Due to their generally poor inter-personal skills, most of the group members are un[der]employed, still live with their elderly parents and have very few friends or spouses.  This clinic offers these individuals a variety of different programs, including counseling, college planning, workforce skills, personal/hygiene, life skills, social skills and recreation.

So think about this…  Most of the participants in Eve’s programs are college graduates and in many cases are highly intelligent.  But due to their quirky behaviors and inadequate social skills associated with Aspergers Syndrome, they are frequently unable to obtain and/or retain meaningful, gainful employment.  Since their employment is so limited, these individuals cannot afford to live independently.  In most cases, these highly intelligent, highly skilled individuals have no option but to live with parents in the bedrooms of their childhood.   OK, that’s not ideal you might think, but living with your parents isn’t all bad, right?

But what happens when their elderly parents become infirm or pass away?  These Aspies, unable to support themselves or function adequately within society, frequently fall under the auspices of the Division of Developmental Disabilities (DDD) and are put onto waiting lists to join a group home.  The DDD is set-up to provide a certain level of support (financial and otherwise) for adults who are developmentally unable to take care of themselves and live independently.

The problem comes with the rapidly growing backlog of people needing placement in group homes.  With 1 in 100 children currently being diagnosed with Autism (according to the Centers for Disease Control and Prevention), this is the fastest growing developmental disability in the US.  Without adequate treatment, these children will grow into adults who require a lifetime of continuing services from the DDD.  Although there is already a significant shortage of DDD group homes and other appropriate facilities, there is currently no plan in place to meet the needs of this rapidly expanding population.

As alarming as those facts sounded, they didn’t touch me directly until Eve casually said, “So, you should put Gregory onto the waiting list right now.  Then, by the time he needs it, there might be a facility available for him.”  I blanched and struggled to understand what she was telling me.  I must have misunderstood.  “Do you mean that you think Gregory will never be able to live independently?” I asked in shock…  That couldn’t really be what she meant – She worked with Gregory – She knew how bright and talented he was.   Eve didn’t answer directly.  She looked at me sadly and nodded.

And with that, my world shifted on its axis.  Confused and reeling from the news, I couldn’t think straight.  “No!!!” I wanted to shout, “That can’t be true!”  But I didn’t.  I am sure my face and body language conveyed my distress, but I tried to calmly gather my papers, thank her for her time and exit as quickly as possible.  Going down in the elevator, I shook my head in denial as tears welled up in my eyes.  I held myself together until I got to my car…and then the floodgates of despair opened.

Suddenly, I was seeing the future in a different light.  The possibilities were not bright, wide open and endless as I had once thought.  Gone were my hopes of Gregory making his own way in the world – finding success and fulfillment through his career of choice.  Gone were my hopes of holding a grandchild in my arms while Gregory and his wonderful future wife look on proudly.  Gone were my dreams of globe-trotting to exotic ports with my husband during our empty-nest years.  Instead the future looked dark and bleak and hopeless.

I cried and cried, trying to get my head around this future that I had never imagined.  Of course, I was willing to do whatever needed to be done to help and support my son, but would he really need all that?  Yes, Greg has his quirks and struggles with some things, but overall he is doing well in school, managing things at home and progressing well.  Surely, he would one day be able to live on his own…

But as I thought about why Eve made her recommendation, I came to see some of the unspoken factors that may have lead her to that conclusion.  As one example, Aspies are frequently lax in their personal habits, because they don’t value the benefits the way an Neurotypical (NT) brain does.  An Aspie doesn’t see well through the eyes of an NT (and vice versa!) and therefore may not fully appreciate that it is not pleasant for that NT to see or smell an unkempt person, much less work or socialize with one.

Yes, Greg is perfectly capable of bathing himself and putting on clean clothes, but if I weren’t there to guide him, would he see the need to do these things on his own?  Perhaps not – perhaps he would go unwashed and wear the same clothes for days.  Yes, at some point in the future Greg could probably shop for groceries and cook a meal, but would he value the need to eat a balance diet and make the effort that that requires?  Perhaps not – perhaps he would eat his favorite take-out pizza 7 nights a week.  Yes, Greg could make his bed, vacuum his room and do the dishes, but on his own, would he choose to do so???  And the list goes on…finances, home maintenance, health, fitness, socializing…  In society, we do necessary ‘chores’ on a daily basis – even if we don’t feel like it.  We do these tasks, because we NTs are aware of the societal benefits of them and the consequences of not doing them.  An Aspie may not value the benefits the same way, and may not even be aware of the consequences that society will impose for not doing so…not a recipe for success.

It dawned on me that, even if Greg could eventually obtain stable, gainful employment and earn enough for his own place, it may not be sufficient for his needs.  For although Gregory would most likely be capable of doing all the tasks required of living independently, without guidance he may not choose to do those tasks.  And that is where an on-going NT influence (whether it be me, a roommate, a wife, or the Resident Assistant at a group home) would be beneficial.  And a group home, filled with fellow Aspies, might be a very positive, nurturing experience.  It could be a very comfortable, supportive environment within which Gregory could thrive – understood and appreciated by those around him.

So eventually I came around to appreciating Eve’s recommendation for what it was….good advice.  We don’t know what the future holds for Greg.  And while I sincerely hope that he will eventually lead a fulfilling, happy life on his own, I can see that some on-going beneficent NT oversight will most likely be necessary.  His father and I will not be around forever, so it is prudent for us to plan for his future.  As much as my heart resists it, we should sign Greg up with the DDD, so that at least he has that fall-back option should he need or want it.   Sigh….

To be honest, having come to that decision months ago, I still haven’t taken any action.  That future seems so remote and Greg’s progress has been very impressive over the last two years…  Besides, AS is becoming almost cool these days, with documentaries and box office movies being made about it and Aspie characters starring on almost every hit tv series.  As the general public becomes more aware of AS and the unique strengths that many of these individuals possess, future employers may very well be seeking out Aspies with lucrative, adapted job opportunities, instead of shying away from them in fear, misunderstanding and/or censure.

In a wonderful book by Temple Grandin and Kate Duffy – Developing Talents:  Careers for Individuals with Asperger Syndrome and High-Functioning Autism, the authors suggest ways to identify and tap into the potential talents of those on the spectrum.  This sage, practical book discusses all aspects of the search for suitable vocations – providing invaluable career advice to and from real people with AS.  So taking all this to heart, I am not abandoning my hopes and dreams for Gregory’s future.  Sure, he might take a little bit longer to ‘launch’ and he may benefit from on-going supports, but that’s OK.  Working together, we will do our best to prepare him for an independent, successful life – one on his terms, of his choosing.  That is my dream.

*  *  *  *  *  *

In spite of society’s growing awareness and acceptance, it remains an urgent priority to address the needs of the expanding autistic population within our social services across the country.  Stop-gap measures must be put in place immediately to address the huge gap in current unfulfilled needs within these organizations.  But equally critically, a strategic plan must be developed to address the anticipated needs of the future.  Society cannot just put its collective ‘head in the sand’ and hope these problems will go away.  We owe it to ourselves;  We owe it to our children…

Let’s make it happen!    – Joanne

It happens to the best of us and for the most part, our fellow citizens (especially if they know us) forgive the occasional faux pas.  We apologize, laugh it off and try to smooth over the awkwardness.  If social mishaps occur frequently however, the response changes.  People start to get annoyed, avoid, and maybe even chastise the ‘offender’.  After giving offense too often or perhaps with insufficient remorse, we soon get labeled as odd, self-centered or rude.  Socializing and working within a team become increasingly difficult and we are left out in the cold.

It’s not nice, but that’s how society works.  Disapproval and shunning are the tools society uses to enforce the rules of social engagement.  These rules, which form the unwritten guidelines for social behavior, are critical to keeping society running smoothly.

The Hidden Curriculum – Part II – Manners

As discussed in my previous blog The Hidden Curriculum, Aspies and others with social-cognitive learning disabilities, can have great difficulty decoding these hidden rules.  This inability to correctly interpret social nuance means Aspies make social faux pas…repeatedly…often without remorse…perhaps without even understanding that a rule was broken.  The result?  Being made an ‘outsider’ in society.

Previously, I outlined a few methods that may be used effectively to help explicitly teach some of these social rules.  This week, the focus is on manners, those pesky little rules from our mothers – Those customs and traditions of society that govern how people treat one another and behave in social situations.  In today’s world where these common courtesies are becoming increasingly uncommon, learning about etiquette and manners is important for every child – not just Aspies.

Below are some of the methods to teach kids the ‘mannerly way of life’.  (But parents are welcome too!)

1.  Model Good Behavior

The first rule of teaching any behavior or skill is to model it yourself.  As Gandhi once said, “Be the change you want to see in the world.”  Demonstrate the correct behavior and with a bit of luck, your child follows suit.  Hopefully, we parents exhibit good manners naturally – modeling the desired behaviors unconsciously on a daily basis.  If however, you are a bit of a slacker at home (hmmm…my husband Barry comes to mind… ) then you may need to step up your etiquette game.  Show respect and treat your family members like favored guests.  Be sure to use ‘please’ and ‘thank you’ regularly – to your spouse and your kids.

I’ve been compared at times, to a drill sergeant, issuing orders in the morning like a rapid-fire machine gun, trying to get everything organized and everyone out the door on time.  It might be efficient, but it is stressful, unpleasant for everyone and definitely not ‘mannerly’.  Although I tend to forget, my kids and hubby are not minions at my beck and call – and shouldn’t be treated as such.  It is much better to organize things the night before, and enjoy a calm, pleasant morning by making polite requests and kind acknowledgements.

But modeling good behavior doesn’t stop at home.  Keep in mind that your kids are always watching you and your example – in the car when you swear at that bad driver, in the grocery store when you are rude to the cashier, and at the playground when you talk behind someone’s back.  It is not easy to always stand tall and take the high courteous ground, but remember those eyes are always on you.  Do your best…

2.  State Expectations Ahead of Time

One very effective tactic to teaching good manners is to explicitly state the expectations of behavior immediately before the occasion.  For example, we have ‘Restaurant Rules’, which get reiterated right before we enter a restaurant.  We outline examples of good restaurant behavior (not bothering other diners, saying please and thank you to the waiter, etc.) and bad (complaining loudly about the food, listening to other conversations, etc.).  Our little lambs still need some reminding during the course of a meal, but at least the expectations are well understood.  And although our kids are far from perfect restaurant guests, they have been complimented on numerous occasions by restaurant staff and other diners for their good manners.

3.  Have a Code Word or Action

Even if kids know proper behavior, they sometimes forget.  (Children do have a tendency to behave childishly…)  It is helpful to have a secret code word/phrase (such as ‘quiet hands’) or action (such as a touch to your noise), that coupled with a meaningful look on your part, will discretely indicate a breach of etiquette to your child.  Hopefully that subtle reminder will be enough to correct the situation.  If need be though, the more direct approach has been used by moms for centuries:  The old faithful “Johnny, what do you saaaaayyyy????” is usually effective to prompt a courteous ‘Thank You” from your little cherub.

4.  Read Manners or Etiquette Books

A book won’t take the place of direct instruction, but is a great tool to reinforce your teachings.  One of my favorite books about manners for kids is How Rude! – The Teenager’s Guide to Good Manners, Proper Behavior and Not Grossing People Out by Alex J. Packer, PhD.  This book is not geared specifically toward kids on the spectrum, but its cartoons, teen-relevance and irreverent presentation make it a great and fun resource.  It is so humorous and entertaining (not at all preachy, boring or dull) that Gregory (and his siblings!) actually WANTS to read it, laughing along as he learns the basics of polite behavior in all kinds of situations.

Manners are a critical component of the Hidden Curriculum. Rules of good behavior must be explicitly taught to those with social-cognitive learning disabilities, but every child should receive these valuable etiquette lessons.  Because in society…We all benefit from polite social interactions:

• Good manners put people at ease and make them feel good – about themselves and each other.
• Good manners impress people and are attractive to friends, teachers, employers, etc.
• Good manners allow people to live and work together more harmoniously and productively.
• Good manners build self-esteem through respect and kindness.
• Good manners are free!

This concludes our manner lesson for the day.  I have to go now…My kids are beating each other up – and they aren’t doing it very politely!

Related Articles

• How Rude! Tips on Managing Preposterous Behaviour in Public Places (chicagonow.com)

Dr. Alexander Kolevzon, from the Seaver Autism Center at Mount Sinai School of Medicine, stated that scientists have identified the gene responsible for Fragile X Syndrome (FXS) – a rare genetic variation which accounts for about 2% of autistic cases[1].  Fragile X is tied to a single gene mutation whereas, many other Autism Spectrum Disorder (ASD) types may be more complex and based upon a combination of genes acting together.  Dr. Kolevzon proceeded to say that researchers are currently able to identify the genetic causes for up to 40% of all autism cases.  (Autism, defined here, includes all ASD, including Autism Disorder, Aspergers, PDD-NOS, etc. ) 

Within the autism research community, autism is generally accepted to be a genetic condition with environmental risk factors.  This genetic predisposition to autism, coupled in some cases with one or more environmental factors (yet to be determined…perhaps maternal factors, infections or toxins) at key points in the growth of the fetus and young child, may lead to the development of autism.  So, there is a long way to go before all the causes are understood, but identifying the underlying genetic components is a huge step forward.

The Fragile X gene (FMR1) is a DNA mutation which in effect, turns off the gene.  “Normally protein products of FMR1 act to dampen the synthesis of proteins at synapses…  Without the brake provided by FMR protein, synaptic protein synthesis is excessive and connections [within the brain] do not develop normally.”  Researchers are now developing medication to restore “normal synaptic protein syntheses and improve function.”[2] 

Based on this ground-breaking research, Fragile X medication is currently undergoing trials in humans with promising results.  Medication and/or genetic therapies for other types of autism will presumably follow thereafter…

How very exciting – I was thrilled to hear about the progress!!!  I choked up, thinking about some of those parents who now have hope that within the foreseeable future, they might be able to ‘reach’ into their severely autistic child’s locked-in world and perhaps communicate with him or her for the first time.  And how amazing it would be for the child (by then probably an adult) to finally be able to break out of his/her shell and interact with the world at long last.  I can’t imagine anything more thrilling.

But then I started to think more deeply about the implications.  Upon initial hearing, one might think, “Fabulous!  Let’s ‘fix’ things!”  However, aside from the significant moral and ethical considerations of gene therapy (which I won’t go into here…), these autistic individuals would be dramatically changed at a very core level – they may lose or change the very essence of themselves – potentially resulting in a radically different personality, skill set and perspective on the world.  Would they want that?  It might be great for the parents to finally have a neurotypical child, but given the choice, would the autistic person choose this for him/herself?  Would that even be a good thing – for the individual?  For the family?  For society?   

Would I want Gregory to undergo a similar therapy to correct his Aspergers?  Sure, he might become more ‘normal’ in his behaviors.  And yes, life would most certainly be less confusing and difficult for him, but he wouldn’t be ‘Gregory’ any more.  Now, I’m sure the NT version of Gregory would still be a great kid, but I would miss my lovable, quirky, funny, amazing Aspie son.  No, I decided quickly, I would NOT want Gregory to undergo gene therapy, if and when it becomes available.  (Having said that, the choice would ultimately be his to make.  I would respect his decision, but I would mourn the loss of ‘my’ Gregory if he opted to try it.)

So, there is no ‘right’ or easy answer and each situation would need to be evaluated on its own merits.  For parents of severely autistic children – those who are non-verbal and not able to function within society to any significant degree, perhaps genetic therapy would provide significant benefits.  But for individuals on the high-functioning end of the autism spectrum, this genetic ‘fix’ may not be the best choice.  It is an intensely personal decision and the trade-offs, risks and rewards of gene therapy would need to be carefully weighed.

Many Aspies don’t feel that their Aspergers is a disability at all, but more of a difference – if not an outright strength!  (See Wrong Planet.com)  Entire forums are dedicated to accepting and appreciating the Aspie brain – for all its unique powers and perspectives – not trying to FIX it!!!

Dr. Temple Grandin, the renowned autistic author and animal scientist, believes that we, as a society actually NEED Aspies among us.  These are the people who are able to look at the world ‘differently’ and come up with new solutions to problems.  They are the individuals whose analytical, detail-oriented, precise talents and single-mindedness can hyper-focus on specific problems in order to research and solve complex technical or scientific issues.  In fact, it has been said that most of the technology (e.g. Bit Torrent) we enjoy (or hate, depending on your perspective!) today would not exist, were it not for AS.

“Some of our world’s finest minds, inventions, art and ideas belong to people with autistic traits.”[3] Among those fine minds that are thought to have had AS are:  Albert Einstein, Vincent Van Gogh, Gregor Mendel, Thomas Jefferson, Carl Sagan, Wolfgang Amadeus Mozart, H.G. Wells, Charles Darwin and Isaac Newton – very good company indeed!

In spite of having significant challenges with social skills, physical coordination, emotional regulation and sensory integration, Gregory is a remarkable, bright and talented person.  He is potentially one of those ‘great minds’ of the future.  He has many strengths and ‘uniquenesses’ that I would be loath to ‘normalize’ by fixing his Aspergers.  And Gregory too, is quite happy with his AS.  Yes, he acknowledges that it does make certain things more difficult, but it makes some things easier too.  He has accepted his condition with grace and dignity – focusing on the strengths it provides.  We love Gregory the way he is – in all his quirky glory….and so does he.

So, after weeks of focusing this blog on the challenges facing Gregory and our family, today I celebrate the many strengths and unique perspectives of my Aspie.  I wouldn’t change him for the world…

[2] “Clinical Tests Begin on Medication to Correct Fragile X Defect,” US Department of Health and Human Services, National Institutes of Health, November 2, 2009.

[3] Fitzgerald & O’Brien, 2007 

Related Articles

• The promise of genetics and autism (psychologytoday.com)

Without realizing it, neurotypical folks constantly, instantaneously and seamlessly survey the written rules or ‘hidden curriculum’ of every environment and every person [we] encounter, to make decisions about how to proceed successfully within a given context.[1]

The hidden curriculum refers to a set of rules or guidelines about social behavior that are often not directly taught.  It is assumed knowledge that helps lubricate the cogs of society and enables groups of people to live, work and interact together harmoniously.  These rules are wide-reaching and complex, covering a variety of topics from table manners to slang words, dating protocol to classroom etiquette…and much more.  Virtually every aspect of our daily lives is based upon a foundation of hidden curricula – widely-held assumed knowledge that we probably don’t even remember learning.

We don’t recall learning most of these rules, because “everybody just KNOWS that!”  We NTs are unconscious social navigators and learn naturally through observation and intuition.  We take it for granted that all relatively smart people should be able to acquire these skills in the same manner.  Unfortunately, for those with Aspie brains, these skills are not acquired naturally.  In spite of being potentially brilliant in other intellectual arenas, they have what is called social-cognitive learning disabilities when it comes to the hidden curriculum. 

An example of this lack of common understanding occurred recently in our home.  Gregory had been dared to do something stupid [my words!] by another boy, so he did it.  When I questioned Greg about why, he answered, “because he dared me…I had to.”  But, instead of reprimanding him for making a bad decision, I backed up and reconsidered.  “Greg, just because someone dares you to do something, doesn’t mean you HAVE to do it.  You can CHOOSE to accept the dare or not.”  Greg looked at me in amazement…”You can?”   He had totally misunderstood the social rule and believed that there was no option with a dare – no matter how stupid.  I shudder to think what might have happened if he still believed that ‘rule’ into his teenage years…Yikes!!!

So, this deficit can create significant problems.  The inability to develop adequate social skills and interpret social nuance of those around them brings life-long challenges to Aspies.  We, as NT adults in society, are willing to explain and excuse social ‘misbehaviors’ in very young children, but as they get older, kids and certainly adults are expected to know these unwritten, unspoken items of general understanding.  How do we react when someone breaks the ‘social code’?  We are shocked, upset, angry and perhaps even disgusted.  “How rude!” or “Weirdo” or “Can you believe this guy?” rings through our heads.  Because, breaking a hidden curriculum rule can make that person a social misfit or even a social outcast. 

What can we do to help those with social-cognitive deficits?  These individuals must learn the hidden curriculum by direct instruction versus intuition.  Parents and educators must become ‘social anthropologists’ to first determine various hidden curriculum items and then find ways to teach them.  This is not an easy task, because we assume everyone knows the assumed knowledge!  We literally don’t know what to teach them, because we don’t know what we know…

One of the primary ways to recognize an example of hidden curriculum is when an error occurs.  When a teenager addresses the principal as “Dude” or when a young man at the urinal drops his pants all the way to the floor.  When a girl texts using ALL CAPS and the receiver thinks she is shouting at her.  When a man in an office talks over his boss to correct the boss’s ‘error’.  When a woman talks loudly in church or during a movie….you name it  – There are rules for just about every interaction we have on a daily basis.  And when a rule is broken, people notice.

To make things even harder for Aspies, the hidden curriculum is not just vast, but it is complex and elusive as well.  The rules change across age, gender, who you are with, culture, environment, etc.  And to add another layer of complexity, most Aspies have difficulty generalizing, so what they have learned for one situation may or may not be carried over to a similar situation – the hidden curriculum rules must be explicitly taught for each scenario!

There are a variety of methods that may be used to help your child acquire unwritten social knowledge, many of which you can read about in available reference material.  One fabulous book, from which I gained my first insights into this area, is called The Hidden Curriculum by Brenda Smith Myles.  Here are a few methods from the book that I have employed successfully with my son:

1.  Safe Person

Identify one or more ‘safe people’ at home, school, camp, etc. who can help your child with Hidden Curriculum questions.  Your child should trust this person and be willing to ask about social questions.  This parent, teacher, mentor or close friend should understand the deficit and be willing and able to provide accurate, clear clarification to the meaning of words, phrases and situations.

2.  Social Narratives

Social narratives describe social cues and appropriate responses to social behavior and are useful in teaching a new social skill in advance of the situation.  Social narratives often use pictures or cartoons to promote self-awareness and self-management.  The most popular social narrative type is Social Stories by Carol Gray, which prescribes a specific framework for the narrative.

3.  Social Autopsies

The renown educator Richard Lavoie developed the concept of social autopsy to help students understand social mistakes – after the fact.  This method clarifies what exactly happened and then enables the child to see the cause/effect relationship between his behavior and people’s reaction to it.

4.  Direct Instruction

The direct instruction method is the one that I use most frequently in our daily lives, albeit informally.  Through direct instruction the teacher models (or states) correct behaviors and the students practices correct or alternative behavioral responses.  One great tool for direct instruction is the Hidden Curriculum One-A-Day Calendar for Kids by the Blackwell Family.  For each day of the calendar year, there is one specific need-to-know lesson.  In our home, we read the calendar item at dinner time and then use it as a jumping off point for discussion and explanation.

These days, I often explain situations and teach the unwritten rules of our daily lives.  I am never sure how much Greg has absorbed about the hidden curriculum on his own, so I explicitly try to help him “navigate body language and social mores in the uncharted areas between the words.”[2]  I guess I’ve been a bit over zealous lately however, because the other day Greg groaned and said, “Mom, can you please stop making everything into a lesson!”  Note taken!

Understanding the hidden curriculum is vital to the acquisition of good social skills, independence and a fulfilling life.  Most of us learn these rules naturally, but Aspies need a road map to our complex, elusive NT social world.  So please – let us all practice tolerance.  Let’s open our NT minds and try not to judge ‘misbehaviors’ too quickly…. That ‘rude’ person may just be an Aspie – seeing the world a little differently.

[2] Stephen M. Shore