Being the parent of an Asperger's child is often a challenge.  My husband and I grapple with what expectations we should place on our 16 year old son.  We struggle with what responsibilities to give him and what he should and should not be able to achieve daily.  Because of that, I have researched and compiled this article to not only inform others about Asperger's Syndrome (AS), but also help myself and my husband learn all we can about raising our son to be an efficient and contributing member of society.

An Overview

First and foremost, be patient!  Remember that children and teens with AS are relatively immature, socially and emotionally, compared to neurotypical children of the same chronological age.  Imagine sending a 10 year old off to high school (even if she has a chronological age of 14) or sending that 14 year old off to college or the army.  We need to adjust our expectations for teens with AS—and make sure they still have appropriate supports.  Don’t pull the “ramp” out from under the “wheelchair”!

Teenagers with AS still need structure, down time, soothing activities, and preparation for transitions.  My AS son requires a lot of down time doing activities he finds relaxing and soothing.  The activities he uses for his down time change depending on what his interests are.  Right now he enjoys playing games on the computer.  Activities others may find monotonous, mundane or immature for his age group are actually a coping mechanism for him, helping him deal with the fast-paced world. 

Go with the flow of your child’s nature.  Simplify schedules and routines, streamline possessions and furnishings.  If your teen likes certain clothing, within reason, do your best to appease him. If your child likes familiar foods, or has a favorite restaurant, indulge him.  Of course, this is not a fit-all situation.  My son has to wear certain clothes as part of his school's strict dress code, so he is not able to wear what he wants all the time.  One thing he does enjoy wearing is his ROTC uniform.  I have found that letting him wear his ROTC uniform one day a week gives him a sense of accomplishment and pride.  I make it a point to cook foods at least twice a week he enjoys, and treat him to McDonald's (his favorite restaurant) as a reward for outstanding behavior or school work.

Have realistic, modest goals for what the teen with AS or the family can accomplish in a given time period.  You may need to postpone some plans for career goals, trips, culture or recreation.  The truth of the matter is AS is a complex syndrome.  One plan does not fit all.  Figure out what your child can and cannot reasonably achieve in a certain period of time and give him or her the benefit of the doubt of they are unable to achieve it.

Communication

Tell your teen just what she or he needs to know, one message at a time, concisely.  Too much information all at once is overwhelming for a child with AS.  For example, if I ask my son to take his laundry to the laundry room, then take out the trash, then help his sister read a book, the majority of the time he would only remember to take his laundry to the laundry room.  The other two things I asked him to do would be completely forgotten about.  Our son has a one-track mind, typical of children with AS.

Impersonal, written communication is easier for the teen to absorb: lists of routines and rules, notes, charts, or calendars.  My son doesn't particularly enjoy doing his chores according to our chore chart, but understands that when his name falls on a certain chore he is required to perform that chore.  Along those same lines, I have had to make homework sheets for our son to take from class to class in school to help him keep track of homework.  Purely remembering what homework needs to be done in which class was too overwhelming.  As long as he had a structured list to work from he completed his homework with no worries about what might have been forgotten.  As a result, his grades improved.

Side by side conversations (walking, in the car) may be more comfortable for the teen than talking face to face.  AS children have a difficult time looking people in the eye when talking.  Completely taking that aspect out of the situation puts their mind at ease and helps them focus on what the conversation is about.  This may seem opposite of what one would expect of children; thinking that the only way a child is listening is if they are looking at the parent face to face.  This is not the case in the AS child.  An AS child actually absorbs the conversation much better when not having to look directly in the eyes of the person they are talking with.

In so far as you can, keep your cool—they can’t handle our upset feelings.  Walk away if you need to.  My husband and I find this difficult.  Our AS son loves to argue about everything and anything which makes us want to stick around the see the conversation through.  I've learned that if I feel myself getting upset with him I let him know I'm finished with the conversation and walk away.  He will eventually come back to talk to me.  By that time I've had a chance to calm down, and he's had a chance to think things through.

Discipline & Responsibility

A simple, low key, consistent approach is more important than ever, as teens become taller and stronger.  Physical punishment should not be in the equation for a teenager, whether they have AS or not.  Learn to pick your battles.  Set and enforce only your bottom line rules and expectations—matters of safety and respect.  Write them down. Make sure both parents and all involved adults agree on the rules. Give choices when possible, but not too many. Engage your teen in problem-solving; what does he think would work?  What consequences should he receive for disrespective behaviors?

Special interests may change, but whatever the current one is, it remains an important font of motivation, pleasure, relaxation, and reassurance for the teen.  As previously mentioned, these interests may seem mundane or unnecessary.  Reality is these interests help the AS teenager cope.  In the same respect, a particular special interest may be taken away as a consequence of inappropriate behavior.  As an example, if my AS son is disrespective of myself or my husband, a consequence is no computer for one day.  Our son learns that certain behavior is not tolerated.  He also understands what the consequences are if he is disrespective again.

Make sure thorough neuropsych re-evaluations are performed every three years.  This information and documentation may be critical in securing appropriate services, alternative school placements, a good transition plan; choosing an appropriate college or other post secondary program; proving eligibility for services and benefits as an adult.  I have been fortunate that the school system my AS son attends has set in place an autism coordinator that makes sure he's receiving any and all beneficial services.  He is routinely tested every three years, and once a year is part of an admission, review, dismissal (ARD) committee designed to ensure he's receiving the correct services.

Possible Shifts and Changes

AS can intensify parent/adolescent dynamics—which are challenging enough!  The “job description” of a teenager is to pull away from parents toward more independence.  For AS kids, the process can be extra messy—not least because they may be even less ready for independence than other teens.  Although some teens with AS are more child-like, be prepared to tolerate/ignore considerable distancing, surliness, or acting out, knowing that it won’t last forever.  At the same time, set some firm limits, and keep a close eye on the child/teen’s welfare.

With or without AS, most teens become less willing to take parent’s word or advice; so we need to hook them up with other trustworthy adults.  If you want your teen to learn or try or do something, arrange for the suggestion or information to come from a trusted adult other than a parent.  Look for other good mentors: Scout or youth group leader?  Psychologist, social worker, peer mentor, “Big Brother,” social skills group leader?  ROTC instructor or martial arts teacher?  Our son thrives in ROTC.  His instructor understands our son's AS diagnosis and has built an invaluable bond with him.

Boys may need to spend increased amounts of time with their fathers, and/or other male role models, as they undertake to become men.  If Dad has taken a back seat, let him know his son really needs his attention now.  If you are a single mother, look especially hard for male mentors at your son’s school or in the wider community.  I was a single mother until three years ago.  The relationship between my husband and son has had its ups and downs, but I'm confident as my husband learns more about AS, he will discover even more extraordinary traits in my son.  At the age of 16, it is imperative that the bond between father and son grow and develop.

Yes, teens do continue to grow and develop.  You may get some nice surprises along the way, as you see the teen take an unexpected giant step toward maturity.  I think of it as their neurons maturing on the vine!  Maybe it’s just that they figure some things out, and get used to the feel of their new body chemistry.

Teens' Mental Health and Safety

Even for a previously well-adjusted child, multiple stressors during the teen years may bring on anxiety and even depression.  Stressors seem to include increased academic/abstract thinking and social demands at school, peer pressure, increased social awareness, and fears of the future.  Highly anxious teens who do not get help may be at risk for hospitalizations, school failure, acting out (including alcohol and substance abuse), or even suicide attempts.

Don’t panic, however—there are interventions you can provide.  Appropriate school placement and staff training, exercise (martial arts, yoga), and/or appropriate therapy with a carefully chosen professional may help control the level of anxiety.  Medications may need to be introduced or adjusted.

Seek out activity-based, practical social skills groups designed especially for teens.  Participating in such a group, being accepted by group leaders and peers, is probably the most powerful way to allay a teen’s potential despair at not fitting in socially and not having any friends.  The positive social experiences and new skills they learn will be assets for the rest of their lives.

Teens with AS are less prepared than neurotypical teens for the new challenges of sexuality and romance.  Some are oblivious; others want a girl or boy friend, but are clueless about how to form and maintain a relationship.  Boys especially may be at risk for accusations of harassment, and girls especially at risk for becoming victims.  Teach appropriate rules, or see that another adult does.  Look for supervised activities in which boys and girls can socialize safely together, supervised by a staff person who knows AS and can coach appropriate social skills.

In Closing

Just as there is no handbook on how to correctly raise children (though some may choose to differ with me!) there is no official handbook on how to raise a child with Asperger's.  All children are unique and all need to be dealt with in different ways.  Being the biological mother of four children and the step-mother to three more I completely understand how different each child really is.  Reality is that a child with AS needs extra special care. 

AS children need to be shown an extraordinary amount of patience, understanding and nurturing.  Picking your battles is essential for any parent to master, but the parent of an AS child has to take battle-picking to a whole new level.  Find your bottom line.  What things are you absolutely not going to tolerate from your AS child?  What things can you let slide a little bit, allowing your AS child an opportunity to find themselves?  This may be hard for parents, especially those with other children.  It's important to discuss this with friends, family or someone who has experience with AS.