UVU 2012 Autism Conference Notes: Perspectives of Fathers whose Children have an Autism Spectrum Disorder

Another of the presentations I attended at the conference was by two women who are researching how having a child with autism affects the dads. They said quite a bit of research has been done into how autism in the family affects the parents together as a unit, and even more has been done on autism and mothers. However, they were only aware of one study that focused on the dads, and that one had a sample size of only seven men. They began their study hoping for a sample size of at least 100, but mostly what they’ve discovered so far is that fathers are not inclined to attend support group meetings or participate in online autism communities as much as mothers, and that the surveys they have sent home with the mothers mostly don’t get sent back. They are very sincere researchers, who seem to very genuinely care about the fathers’ experiences with ASD, and they could really use some more input, so if you are a man (or know a man) who has a child with an autism spectrum disorder, please help out. It only takes about 10-15 minutes, and you can participate from home over the internet, so it’s really convenient, just click the link below. And know that your help is really appreciated.

http://www.surveygizmo.com/s3/840667/Perspectives-of-fathers-of-children-with-autism-spectrum-disorders

2012 UVU Conference Notes: “Autism Across The Lifespan”

The first workshop I went to was “Autism Across The Lifespan”. The presenter, Jarad A. Stewart, M.Ed, was diagnosed with Asperger’s Syndrome as an adult and works with people on the autism spectrum professionally. The presentation was cram packed with really good information. I wish it had been recorded because it went by so fast I could only capture some of it in my notes, but here’s what I was able to jot down.

Autism rates are increasing all over the world. Autism is more prevalent in South Korea and the UK than it is in the United States, but even there the rates are not as high as in Utah.

The three “terrible questions” parents ask when their child has autism are:

1. Will my child be able to live independently?
2. Will my child be able to have a job?
3. What will happen to my child when I die?

Unfortunately, the vast, vast majority of autism literature and research focuses on children, not adults, so there is not a great deal of information on autistic adults. However, what information there is, is generally encouraging. Here are some ways in which autistic adults are different from autistic children:

• They are older. This is obvious, but has aspects worth noting.
  • Mirror neurons develop more slowly in the autistic brain than in the neurotypical brain, but they do develop–and continue developing through adulthood. Although mirror neuron function is lower in autistic children than in their neurotypical peers, by age 30 most autistic people have the same mirror neuron function as neurotypicals. Later in life, they have even greater mirror neuron function.
  • The autistic brain actually grows more quickly than the “normal” brain. It takes longer to organize the pathways, but that structuring does usually come with time, though it will still be “different”.
  • Improvement is seen with age and maturity in many aspects of autism, including behaviors such as stimming and meltdowns, sensory issues, and executive function.
  • In up to 15% of adults the improvements are such that the person no longer qualifies as having a “disability”.
• Out of the public school system
  • For adults there are different rules and social expectations than we have for children. Often the “adult” rules and expectations are more compatible with autism, and it is easier to adjust things to work better.
• Improved social potentials
  • Adult persons with ASD have had more practice creating social “masks” and finding ways to cope in social situations; therefore social situations are less stressful for them (still stressful, though)
  • Special interests tend to broaden  –AND–
  • Other adults around them develop more specialized interests as they pursue college majors and specific career fields. Special interests tend to stand out less in the adult world because everyone is specializing.
• In adulthood, you reap what has been sown in childhood
  • Emotional scarring has left its mark. All autistic people have emotional scars. The trick is to learn to live around them.
  • Support is withdrawn as kids leave the school system, and you’ll see people either sink or swim. If they sink, don’t panic, it’s not “the end”, it just means you need to find new supports and continue working toward independence.
  • Generally, whatever “trajectory” was established in childhood comes to fruition in adulthood. For example, a child who was taught it’s ok to be different, has established some coping skills, and can self-advocate, will continue down that positive path into adulthood, even if it takes them a little longer than their peers to “arrive”. A child who is on a less positive trajectory will likely continue to follow that as well into helplessness and depression. It’s very important to start early and help kids develop a positive direction.
• Often in the media people with ASD are portrayed as the savant, or the nerdy math whiz, or the super scientist. Real people with ASD are generally less glamorous, but can be quite successful in their chosen fields. Adults with ASD often fall into one of three clusters:
• 1. The “Walmart” cluster (the name isn’t because they all work at Walmart, but rather because the initial letters spell out Walmart)
     • Writers
     • Actors
     • Leisure and Recreational
     • Musicians
     • Artists
     • Research and education
     • Technical people
  2. The “Dark Side”
     • Hackers and pirates
     • Stalkers and sex offenders (usually these are people who have not been taught properly about sex, and how to relate to members of the opposite sex, and who develop unhealthy obsessions as a result; TEACH your kids, even if you don’t think they’ll ever be interested in romantic relationships, because even if they never are, they’re still sexual beings)
     • Terrorists and killers
  1. The Non-productives
     • The typical profile here is someone who lives with their parents into adulthood, spends most of their waking time sitting in front of the computer playing video games or just looking up things that interest them, wind up staying up into the wee hours, and then can’t get up in the morning. They have a really hard time getting and holding jobs because they have never developed the necessary skills. Teach your kids to work, and to be responsible.
• As a rule of thumb, autism is a disorder of “extremes” and tends to produce societal “outliers” on both the “good” end, and the “bad” end of the societal spectrum. Generally the extremes we see in childhood will moderate as our kids grow into adulthood, but they might still retain some of their more “useful” extremes–an extreme talent for technology, for example, or an extreme memory for train schedules.

Mr. Stewart told us about a man named Donald Triplett, also known as “Patient 1″. He was the first person ever diagnosed with autism. At age three he was institutionalized as “hopelessly insane”. Later, though, he was removed from the institution and sent to a farm, where he was able to use his strengths, and work through some of his challenges. Now, at nearly 80 years old, Mr. Triplett is a high school graduate, works as a bank teller, lives on his own, and has a support system in his community. Many of his neighbors were quite protective when people went asking questions, and refused to talk about him until they were convinced that answering questions would in no way come back to harm their quirky neighbor.

Key Indicators of Likely Success in Adulthood for ASD:
(copied from handout) 

Research shows that individuals with ASD who possessed all or most of these characteristics have had the best chance of achieving positive life outcomes (in no particular order):

1. Exhibited communicative phrase speech by age seven, and average or better communication skills by adulthood (approximately age 25)
2. Displayed average or better IQ (80+), and engaged in life-long learning/education
3. Had early intervention (reduces secondary psychological problems/skills deficits)
4. Understood their diagnosis and accepted it along with its strengths/deficits
5. Had at least one caring person who encouraged and supported them no matter what (preferably a “Mentor” or “Model” as well as at least one real friend).
6. Participated actively in the world around them (insofar as possible); were not overly sheltered in childhood, and had a wide range of life experiences.
7. Had an accepting community (a core group that tolerated their differences)
8. Had a system of strongly held values and beliefs to guide them.
9. Set clear goals for themselves and worked persistently toward achieving those goals while learning how to flexibly deal with changes that arose.
10. Achieved success in their special interests (which offsets social challenges).
11. Developed the skills to care independently for their physical safety and needs.
12. Learned to present a socially acceptable mask/persona/facade in public, including hygiene/grooming, conversation skills, facial expressions, and eye contact.
13. Developed coping skills for dealing with anxiety, failure, rejection, and aloneness.
14. Developed critical-thinking skills and problem-solving (executive function) skills (i.e. mental talk).

But remember that there is ALWAYS hope for improvement. Don’t ever give up trying.

Tips for living independently:

• Develop appropriate accommodations in the living environment. (i.e. lists, routines, appropriate lighting, and so forth)
•  Establish a predictable, consistent environment
• TEACH skills IN CONTEXT and explicitly. This works along the same lines as potty training. It might take longer, but you just don’t ever give up and quit. Break everything down into its smallest steps and work on one baby step at a time.

Tips for working at a job:

• Develop appropriate accommodations in the workplace (i.e. quiet, appropriate lighting, a designated mentor to go to for help)
• Develop a predictable environment
• Cultivate useful skills
• TEACH skills IN CONTEXT – look for opportunities for apprenticeships and job shadowing so skills are seen and taught in context instead of just theoretically in a classroom. At a new job, establish a relationship with a mentor who can help you adapt.

AUTISM SHOULD NEVER BE VIEWED AS A BARRIER TO SELF-FULFILLMENT

What about things like driver’s licenses, marriage, children? 

These things are a BIG DEAL. They are hard. Don’t take them lightly. But some people with autism successfully navigate all of these things. The presenter said that marriage was a huge adjustment, and each child that came along was another huge adjustment. He had to re-evaluate his routines and priorities, but he just made each new family member a new “obsession”, and it has worked out beautifully.

Will my child ever be “normal”?

Maybe. Whatever normal is. But if not, remember that a lot of successful people are also “quirky” and “eccentric”, and there’s nothing wrong with that.

Don’t worry too much about being “normal”. Do find a way to “fit in” with the society you live in, but feel free to be creative about finding your own, unique fit, rather than trying to fit into some predetermined concept of “normal”. You don’t have to be “like everyone else” to be successful or to fit in.

What can parents do now to help their children succeed as adults?

• Abandon preconceptions
• Acknowledge that ASD is not a “death sentence”
• Stop the panic mongering
• Surrender the “1-up”
• Teach problem solving and “masking”
• Focus on strengths
• Prudently use interventions (use common sense, and evaluate to make sure the intervention is doing what it’s supposed to, don’t just do whatever intervention is popular at the moment)
• Involve the individual with ASD as much as possible in decision making
• Live and let live
• Prioritize adaptive (non-academic) skills — this would be practical skills like basic housekeeping, hygiene, social skills, planning, setting and working toward goals, etc.

Remember that autism has characteristic strengths as well as challenges.

• learning advantages
• excellent memory
• unusual visual and auditory abilities
• superior ability to process information (can take a little longer, but is better understood and remembered)
• intense focus
• superior deductive and analytic abilities
• superior ability to make rational decisions
• creativity
• strong focus on systems
• thrive on routines
• persistence
• honesty
• deep caring
• idealism
• perfectionism

Additional Resources for Adults on the Autism Spectrum:
(from the handout) 

http://healthcare.utah.edu/home/resources/

http://dps.missouri.edu/Autism/AutismFactSheet2011.pdf

http://www.wrongplanet.net

http://forums.delphiforums.com/asandpartners/start

“Bullet-Proof Parenting” from the April 2012 UVU Autism Conference

Oh how I wish I’d learned this sooner!!!!!!  I went to a class called, “Bullet-Proof parenting:  Gain Confidence in your parenting in the face of criticism.”  It was an excellent class.  The panel members were all mothers of children with Autism.  Their stories were all different, but we could relate and learn from each of them.  There was no handout from this class so these are all taken from my notes.

MOM #1

Mom #1 shared how when she first got the diagnosis of Autism for her son, she started out being VERY closed about it.  She wouldn’t talk about it to ANYONE.  She tried to make her son act normal and he wouldn’t, so she isolated herself from all others around her.  She even would tell people that her son didn’t have Autism when she knew he did.  She said that it was a process for her to slowly “come out.” The opportunity came for her when she moved.  She decided that she would make a fresh start and her son would be the “poster child” for autism.

• TIP:  When people see your child acting up in the store or at Church etc., remember that people look to the parent to gauge how THEY should react to your child’s behavior!!!  It’s how WE respond.  If we respond to our child’s behavior in a calm manner, they will tend to react more calmly, etc.  It will lessen the “deer-in-the-headlight” looks!
• TIP:  Don’t waste energy on insignificant people.
• TIP:  Embrace Autism—be proud of it.
• TIP:  Let people in.  Share your joys, sorrows, fears, etc.

We are for differences!  Until difference no longer makes a difference.

MOM #2

Mom #2 shared her story.  She said that when her son was diagnosed she told everyone on the outside that she had accepted it and told everyone he had Autism, but she went home every night and cried about it.  She would chase her son all around the grounds of the Chapel on Sundays and the people would say things to her like, “How is he ever going to learn to sit and be reverent if you are letting him run around the Chapel?”  So finally she got fed up about it and one day she got up in Sacrament Meeting and told everyone about Autism.  She asked herself, “Why do I care about what other people think?  It doesn’t hurt me if I don’t let it!”

• TIP:  Come to a point and accept it!  Love your child.
• TIP:  Come to a point that you have to be confident with your skills as a parent.
• TIP:  You have to start seeing people differently.  Feel sorry for THEM.  Take their comments and looks like water off a duck’s back!  Forgive people.  They don’t understand.  Bullets will come.  Don’t worry about it!!!

You can only give people so much information.  Tell them what you can and let the rest roll off.  If you emotionally hold onto all the hurts, it just hurts YOU.

MOM #3

This mom THOUGHT of all the mean things she was going to say to people only to find that people didn’t say anything to her!  She feels that her son had just as much right to be in the world as everyone else, but you still are respectful to others.  So if your son is loud and melting down in the store, be wise and respectful to others by taking him out all the while knowing that he still has the right to live in this world and be with you in the store.  There’s a balance.  She said that you kind of have to walk around with blinders on to everyone else.

MOM #4

This woman was hilarious.  Her son was severely Autistic and she shared a few pretty intense stories about her son.  She said that at one time they were going on a trip on an airplane with their son.  On the way to their destination, her son was assigned seat 13.  On the way home they were assigned a different seat and her son came unglued.  He proceeded to climb over seats in the airplane just so he could sit in seat 13.  (He’s 200 pounds and 5’8” if you can imagine.)

She said that she gives people the “stink-eye” when they give her dirty looks.  She says she has no problem handling people who say mean things.  Her problem is just the opposite.  When people are nice to her she cries.  She said we have to be careful because sometimes when we “think” someone is judging us, they may not be.  She said that most people do want to help, they just don’t know how.  She said there are people out there who could never handle what we do.

• TIP:  We can choose to laugh or drink!  She was joking of course, because she said since she doesn’t drink, laughing is the only option.   She said that when she feels depressed, she self-talks.  She tells herself that she knows that she’s going to get out of it.  She’ll be okay.
• TIP:  Do the best you can and don’t feel guilty about the rest.  We tend to feel so guilty when we shouldn’t.  Do what works for your family.
• TIP:  She has a mantra that she repeats over and over:  “It’s all good.”

MOM #5: 

I love what this mom said about comments that people make giving you suggestions you should try, like, “Have you tried herbs?” or “Have you tried spanking?” etc., is to say, “THAT WOULD HAVE BEEN NICE IF THAT HAD WORKED.  IT DIDN’T WORK BECAUSE THIS IS ONE OF THE MARKERS OF AUTISM…”

• TIP:  Reinforce what someone does WELL.  If someone does something that really “helps” you with your child, let them know!
• TIP:  When some people try to tell you your child acts so well behaved it’s hard to believe they have Autism, use this tagline:  “He’s come a really long way.”

And finally:  There are some people who will never get it and you just have to leave that alone.  Don’t try to explain.  Just let it go.

Provo Canyon Hospital offers acute treatment for adolescents

Heidi Chalk, the Business Development Representative of Provo Canyon Behavioral Hospital, just recently sent me some information that may be of interest to parents.  The Hospital provides an adolescent Acute Treatment Program (ages 13-17) designed to stabilize an immediate crisis, while providing the adolescent with skills to alleviate the risk of future incidents.  The family focused, therapeutic learning environment is structured to meet the psychological, social, family education, and physical needs of young people ages 13 through 17.  The overall treatment goal is to assist the individual to achieve optimal mental health, allowing the patient to return to life’s normal activities.  If your child exhibits severe psychiatric symptoms of depression, ADHD, behavior disorders, anxieties, etc., you can call the hospital 24 hours a day, seven days a week at 801-852-CARE (2273).  You can also visit their website at www.pcbh.com.

Meltdown Prevention Plan from the March 8, 2012 Autism Support Group

Meltdown Prevention Plan

(“No More Meltdowns,” by Jed Baker, Chapter 6, pg. 65)

 

CHANGE THE TRIGGERS.  These might include changes to the:

—Sensory demand of the situation  (e.g., noise, light, touch, taste, smells.)

—Timing of the situation  (e.g., avoiding tasks when a child is excessively hungry, tired, or sick.)

—Task Difficulty (e.g., making a task easier or shorter in duration.)

—Visual Supports  (e.g., providing pictures or written words to explain what to do in a situation.)

TEACH SKILLS TO DEAL WITH THE TRIGGERS.  These are skills to replace the negative behaviors with positive, alternative ways to cope with the triggers.

TRY REWARD OR LOSS SYSTEMS

—Reward the positive alternative skills with praise, privileges, material rewards, or point systems that add up to larger rewards.

—Loss systems should be used only if the triggering situation has been modified, the child knows a better way to deal with the situation, was reminded to engage in the positive behavior, but instead chose the disruptive behavior.

CONSIDER BIOLOGICAL AND PHYSICAL STRATEGIES, which might include:

—Dietary changes

—Exercise, meditation and other physical modes of relaxation

—When other interventions have failed and the behavior is severely interfering with functioning, we may want to consult with a physician about the possibility of medication therapy.

Preventing Meltdown Techniques listed in the book, “No More Meltdowns,” by Jed Baker 

“Do your School Work”  (pg. 70)

“Try it.  It’s Delicious.”  (pg. 76)

“Hurry Up, the Bus is Coming!”  (pg. 81)

“Clean Up”  (pg. 85)

“Let’s Go to the Party”  (pg. 88)

“Just Wait”  (pg. 94)

“You Can’t Always Get What You Want.”  (pg. 99)

“Okay, Time to Stop Playing.”  (pg. 104)

“Winning Isn’t Everything.”  (pg. 110)

“It’s Okay to Make Mistakes.”  (pg. 114)

“But Names Will Never Hurt You”  (pg. 119)

Autism Conference

Utah Valley University is holding an autism conference Friday, April 20, 2012. It looks like it will be filled with great information from talented speakers, as well as a time to just hang out with other people who can really relate to our lives. Pre-register through April 17 for $19.00. After that, registration will still be only $29.00. What a great value!

For more information see the UVU website:
http://www.uvu.edu/chss/autism/

Notes from the February Book Review: “No More Meltdowns” by Jed Baker

No More Meltdowns

by Jed Baker, Ph.D

THE SOLUTION

Chapters 3-6

Chapter 3–ACCEPTING AND APPRECIATING OUR CHILDREN.

To adjust our expectations so that we can develop and maintain a positive relationship with our own children we must:

* Be able to control our own frustration before we can reduce our children’s frustration.

* Help our children feel competent with us and avoid “learned helplessness.”

* Avoid constant power struggles.

Tips for controlling our own frustration and  behavior include:

1. Expect challenging behaviors from our children as part of normal development.  Expecting perfect behavior sets us up to be more than annoyed by our children’s behavior.
2. Do not see our children’s actions as threats to our own competence, but instead recognize it as a function of their inability to cope with frustration. Alternatively, if we take it personally, our upset with ourselves increases our anger towards our children.
3. Understand that challenging behaviors are temporary until we can figure out better ways to manage and prevent those difficult situations.  IF we see it as an unending problem, we will surely be angrier.
4. Tuning in to our own triggers can help us be ready to respond more thoughtfully rather than automatically losing our temper.

Some ideas on building competence:

1.  Involve kids in daily household activities such as gathering laundry, taking out the trash, sweeping, vacuuming, taking care of the pets, preparing for a meal.  Even if the participation makes the chore longer, it’s worth it.
2. Determine areas in which they have some natural strengths, and set up activities in those areas.
3. Avoid demands that are beyond their capabilities.
4. Praise their effort when they are working on a project.  This allows them to appreciate working hard and practicing whether or not they succeed.  The lesson is: success eventually comes to those who work hard.

Avoid learned helplessness:

1. Refrain from making overly critical statements such as, “This is easy; why can’t  you do it? What’s wrong with you?” ; “All the other kids can do this.”; “Just try harder,” when children are failing at a task beyond their current ability.  What our children need is help in understanding what to do.
2. Give children task that they are capable of doing.
3. Anticipate frustration as part of learning and let your child know that it’s okay.
4. Avoid power struggles: “If children are prepared for a challenge and have been taught skills to cope with that situation, then we can try to push through their resistance and endure the power struggle.  If children do not  have the skills to cope with a challenging task, then we should avoid the power struggle.”
5. Validate feelings by using statements such as: “That makes sense.” “I can understand how you feel” “I wish I could make it better.”

 

“To avoid an escalating power struggle, we may need to deal with the emotions before we can use reason and enforce  rules.  Sometimes we do this by making validating comments to our children and sometimes we find ways to distract them from the triggers to their upset.

 

Chapter 3 Summary:  When we accept and appreciate our children, we help to establish a positive relationship.

Notes from Jan ’12 Autism Group Book Review: MELTDOWNS

Here are notes from the January 2012 Book Review, “No More Meltdowns” by Jed Baker.  Ideas shared by parents are interspersed.

Chapter 1:  MELTDOWNS:  WHEN REWARDS AND PUNISHMENTS ARE NOT ENOUGH. 

• Meltdowns are escalating negative emotional reactions.  All behavior is communication.
• We must have consistent rules and consequences.  When consistent rewards and punishments are not working, it’s time to try a new strategy.  We talked about the difference between choosing to have a power struggle with our child and balance.  A parent suggested that we should remember to “pick” our battles.  Work on the “biggest” issues first, and not everything all at once.
• From the book, “When the challenging behaviors continue despite consistently enforcing rules, it does not matter anymore whether the behavior was intentional.  We need to understand how to alter the triggers to those behaviors and/or teach better ways to cope with those triggers.”

THE FOUR STEP MODEL:

Step 1:  Accepting and Appreciating your child.

• “Maintaining a positive relationship is very much about managing our expectations and perceptions of our child.  We must appreciate who the child is rather than try to force him to meet an unrealistic expectation…Efforts to enforce rules that are not appropriate to your child can break down the relationship between child and adult and create more stress.  When children feel accepted and appreciated by us, they are more likely to listen to us.”

Keys of managing a healthy relationship with our children are:

• Control our own tempers as parents.  Put the relationship with our child FIRST!!!  A technique shared by a parent that helped her control her own temper was to think about things from her son’s perspective.  She would ask herself, “How would I feel if it were ME in my son’s situation?”  Another parent shared that we MUST take care of ourselves as parents, even if it’s just for 10 seconds, 30 seconds, 10 minutes, 30 minutes, ½ day, week, whatever.  She suggested that we fill our reservoirs often, even if it’s just popping a chocolate in our mouths for 10 seconds.  This can help us control our temper and remain calm to take care of our child.  We can’t expect ourselves to give from an empty well!  Another parent shared that if what you are doing isn’t working, it’s time to try better things!  Anger NEVER solves anything, just ruins relationships.
• Reduce frustration by creating an atmosphere in which the child feels competent.  This builds a sense of competence and trust in the adult caregiver.  Consider what builds TRUST between you and your child.  One technique mentioned by a parent was when your child was feeling frustrated, to instead of escalate with the child, or try to “STOP” the child from escalating, you ask gently, “How can I help you right now?”  It builds trust and helps the child see you’re on his/her side.  It also helps avoid meltdowns and confrontation.
• Avoid constant power struggles.  Consider a change in demands rather than forcing compliance when possible.

Step 2:  De-escalating a meltdown

• Distraction is a tool to de-escalate a meltdown, but preventing the meltdown is much more productive.  Chapter 4 (discussed in February) will discuss tools for de-escalation and prevention.

Step 3:  Understanding why a meltdown keeps occurring. 

• This is where Functional Behavior Assessment comes into play.  (To be discussed later.)

Step 4:  Creating Plans to Prevent Meltdowns

• When we understand why a meltdown is occurring in a particular situation, we can create a plan to prevent it.  Components of a good prevention plan usually involve four areas of intervention:  Changes to the situations that trigger meltdowns, teaching skills to deal with the triggering situations, using rewards or losses, and biologically based strategies.

Effective Strategies to Stop Bullying

Here is an article I found that gave really great advice about bullying.

I received the following email from a mother…

I have a son who is 10 years old who has Aspergers. He has troubled being bullied at school. The frustrating thing is that he continues to “hang out” with these bullies and says they are his friends. He is scared to stand up for himself to these kids, but doesn’t have a problem fighting with his brother or sister. Any suggestions on how to deal with this?

Feeling that the bullies are your friends is all too common among kids who are bullied. Many children with ASD desperately want friends. The attention they receive from bullies is often better than being totally ignored. And bullies are very manipulative. They can bully your child one minute then pretend to be their friend the next. Most kids with ASD are so socially naïve that they cannot tell that the bully is simply using them for their own perverse enjoyment.

Let’s start by defining what we mean by bullying. There really are two categories.

1. Teasing — verbal abuse like insults, calling names, being “made fun of.”
2. Physical abuse — being slammed into the lockers, having the books knocked from your hands, being hit or punched.

There are several strategies that work effectively with bullies, but there are MANY actions to avoid.

What NOT to do:

 

 

	Fighting back.  Bullies are typically socially very astute. They understand the system and understand how the school works. Many are “jocks” and are liked by teachers and other students. If your son were to fight back, he is the one who will typically get in trouble with the school. And you son may also get beat up. This strategy is always a bad idea.
	Ignoring the bully. This is what many parents recommend. But in fact, it rarely works. The reason is that ignoring the bully is a reaction to what the bully did. It is not normal to ignore a comment from another person. This tends to be what the bully wants. He can see that he is upsetting your child and will likely just continue to abuse your son and possibly elevate the level of harassment.
	Walking away. Again, this is the advice parents often give. But it rarely works. The reason this is not an effective strategy to get bullying to stop is that the bully made your son react. Your son would normally not walk away. But the bully, through his comments or actions, got your son to walk away. This tends to also encourage the bully to continue because now he feels emboldened and more powerful.
	Contacting the parents of the bully. Do NOT do this. This is nearly always a bad idea. Many bullies are abused at home and come from bad families. The parents of the bully will simply defend the bully and possibly try to retaliate. Let the school and the police handle things.

What Works?

One of the most effective strategies that your child can use is to respond to the bully’s taunts (assuming teasing, not physical bullying) is with a neutral comment.

Let’s say the bully tells your son “You stink.” A good way to respond is to look at the bully and say in a very neutral tone something like “Whatever.”

The bully gets very little satisfaction from this exchange. Your son was not bothered, he did not walk away (which would be a reaction), he did not get upset (another reaction) nor did he say something aggressive in response (which tends to heighten the conflict).

It is not easy to show no emotion and to respond in a neutral way but this has been proven to be how non ASD kids respond effectively to bullies. And it is often the most effective way for your son, personally, to deal with the bullies.

One thing to keep in mind is that if your child is physically assaulted, then all bets are off. According to Alexander Gantman of the UCLA PEERS Social Skills Program, “It’s a very important distinction. If you make a person with a tendency for physical aggression feel inadequate by using tease-the-tease it will possibly cause them to escalate and physically attack.”

What Can A Parent Do?

Parents should not allow their children to be teased or bullied but physical abuse is often easier to fight.

 

 

	First, make sure you know what is going on. Talk to your child. Document each instance of abuse. Make sure you know as many details as possible. What exactly happened? Who did what? You definitely want to know if any teachers were around to see it because some teachers simply ignore the problem — which makes it worse.
	Tell the school. Have an in-person meeting with your child’s teacher and the principal. Do not let the school off the hook. You are not responsible for protecting your child when he or she is at school — that is the responsibility of the school administration.
	Demand that the school investigates. You do not have to know the names of those who are bullying your child. It is the school’s responsibility to provide a safe environment where your child can learn. Demand that the school does its own investigation if you do not have all the facts. Bullying never happens in isolation. There are always lots of witnesses. After all, that is the goal of the bully — they wantan audience.
	Document everything. Put everything in writing. Make sure you have an audit trail of all meetings you attend — Who is there? What are their titles? Date and time of the meetings? Location? Write emails documenting what happened at each meeting and what actions were to be taken as a result of the meeting. This will prevent the school from claiming that they did not know what was going on. After each meeting, send an email to every person at the meeting. Document what was said by whom. What actions were promised and by when. You may also want to copy people who were not at the meeting such as the Superintendent of Schools or Board of Education members — this visibility is often enough to get the school to take your seriously.
	Demand action. Ask the school administration what steps they plan to take to protect your child. Your child, if formally diagnosed with autism or Asperger’s is protected by the IDEA (Individuals with Disabilities Education Act). If your child is being hit, demand that the school discipline the bullies. If they do nothing, file a formal complaint with the police department. But do NOT contact the bullies or bullies’ parents directly. That is what the job of the school and police.
	Follow up.  Make sure that your child continues to communicate with you. As soon as another instance of bullying occurs, immediately have another in-person meeting with the school administrators. Document that the problem continues to occur. Demand that the school take measures to protect your child. Unfortunately in this world, the “squeaky wheel gets the grease.” School administrators often hope you will simply go away. If you do not go away then you force them to solve a problem they may prefer to ignore.

Here is a tip from a mom that might work for your child.

My son, now 22 was much bigger than the other kids in his class and so was the natural target of bullying. I taught him, at a very early age, to loudly announce “I don’t like that!” whenever someone did something he didn’t like. That way I didn’t have to teach him every specific thing people might do. Then I taught him to tell what it was he didn’t like, such as “he called me a name”, “he touched me” or, “he said words I didn’t like”. Being loud would call an adult’s attention to the problem and his brief explanation would cause the adult to seek more information. The last thing bullies want is adult attention so after a while they left him alone. Then the other kids who were bully targets started to hang around with him and he had friends -of sorts.

One Last Tip—Don’t Invite Abuse

If your child goes to school without wearing deodorant and he really does stink, then he is inviting abuse.  Or if your daughter is utterly clueless about how she dresses, or does not comb her hair…let’s face it, this only attracts the wrong type of attention.  Do your loved one a favor. Help him or her fit in. Give them concrete advice on how to avoid attracting ridicule or negative attention. Many with ASD do not realize how they appear to others. As a parent or friend of a person on the autism spectrum, help them help themselves.

Notes from the November 10, 2011 Autism Support Group: AUTISM ACCOMMODATIONS AT HOME

Amy, creator of our new blog, taught at our November Autism Support Group about Autism Accommodations parents can make at home.  There is a LOT of GREAT information in this post that can be really helpful to parents.  Thanks Amy!

 Autism Accommodations At Home

Some general principles to keep in mind when deciding on accommodations:

Set goals. Goals should be specific and measurable.

·         Long term: Have a vision of what you’re aiming for over the long haul.

·         Middle range: Break the big picture down into specific skills or behaviors to target for the next few weeks or months

·         Short term: Break each skill or behavior down into the most basic elements. Which steps can your child do now? What is the NEXT step he or she needs to learn? –OR—what is the NEXT step better for the target behavior? (Build bridges one plank at a time for your child; don’t demand that he leap gaping chasms in a single bound.)

Prioritize.  Focusing on a specific target gets better results than a random shotgun approach

Set your own priorities your own way, but here are some possible categories to think about:

A)     Top Priority: Behaviors that pose a safety risk. Skills that are critical to survival.

B)      Medium Priority: Behaviors that are causing major disruptions in family life or school. Skills that are important for the child to become a productive member of society.

C)      Low Priority: Behaviors that are weird and annoying, but not dangerous or overly disruptive. Skills that it would be nice for your child to gain, but which are not essential to a happy life.

·         Which three skills are most important for your child to learn next?

·         Which three behaviors are most important to work on now?

·         What safety measures, accommodations, or compromises can be put in place to help you, your child, and your family live with the issues you’re not currently working on?

When you put an accommodation in place, think about:

·         Specifically, what is the purpose of this accommodation? What behavior or skill is it intended to address?

·         How does this accommodation meet the need?

·         What is the desired outcome of the accommodation? How will you know if the accommodation is successful or not?

·         What is a reasonable period of time to try this accommodation to see if it results in the desired outcome?

·         Who will be responsible for seeing that the accommodation is carried out?

·         How will this accommodation affect the relationship between you and your child (and other family members)?

It’s ok if your accommodation isn’t a success. Even the failures will give you new information about your child that will help you formulate future accommodations more successfully. Just re-evaluate, regroup, and try something else. You have your whole life ahead of you, you don’t have to fix everything this afternoon. Trust me, the autism will still be there tomorrow.

Sensory

Remember that kids can be hyper-sensitive, hypo-sensitive, or swing back and forth along the whole spectrum of sensitivity. Adjust sensory accommodations accordingly. Sometimes kids need less stimulation to avoid becoming overwhelmed, but sometimes they need more stimulation to keep themselves oriented and connected.

Consider assembling a “Sensory First Aid Kit” to take along when you go places. It might include things like sunglasses, ear plugs, chewing gum, rubber gloves and/or wipes, a favorite snack, a fidget toy, a soft brush, etc., as appropriate for YOUR child’s sensory needs. When your child is in sensory distress it’s nice to have some tools to try to help, and older kids can learn to self-“medicate” and may feel less anxious if they know they have their toolkit along.

Vision

·         Evaluate lighting. Lighting that is too bright can cause some children distress. Fluorescent lighting can seem to flicker like a strobe light for some children.

·         Colors – Intense colors, pure, bright tones, and  “warm colors” (reds, pinks, yellows, oranges, etc.) are often more stimulating to the nervous system. Pastel colors, greyed tones, and “cool colors” (blues, greens, violets) are generally more soothing. Choose colors for walls, furniture, bedding, clothing, etc. that will be appropriate for your child’s needs. Bright primary colors are popular for kids, but may be over stimulating for autistic children.

·         Patterns – stripes, dots, plaids, paisleys, etc. are fun, but too many can overwhelm a sensitive nervous system. Words or pictures on clothing can also be over stimulating. Opt for plain colors or minimal patterns, especially close to the face or in frequently used areas.

·         Clutter can be visually stimulating. Keeping things tidy can help a visually sensitive child stay regulated. Putting doors or curtains on shelf units and cupboards can also reduce visual clutter.

·         Sunglasses and hats can help with bright lights outdoors. Look for close-fitting “wrap-around” sunglasses that control light on the sides and top as well as just looking forward.

·         Movement –  rapid, repetitive motion can be stimulating to the nervous system. Slow, gentle, deliberate motion is more soothing. Sometimes your child needs you to just be still. Mobiles and wind chimes can provide additional stimulation, as can TV and computer screens.

·         Sensitive kids can have a hard time filtering out peripheral stimulation, which can act cumulatively on the nervous system. Sometimes a dim, clutter-free area with a door that closes can be a big help for oversensitive kids.

Hearing

·         Pay attention to background noise—all the sounds you don’t normally “hear” because your brain filters them out—heating and air conditioning, buzzing lighting, creaky floors, wind, birds or traffic outside, your own breathing, people talking in the hallway or next room over. It can add up really fast.

·         Limit the number of sound sources going on at once in your home. The radio OR the tv OR the computer; not all of them at once.

·         Headphones. Play music or stories in headphones for your child to help drown out the constant auditory “clutter” of background noise. Have other family members use headphones when using the computer or listening to their music. Run the washer and dryer when your child is at school (or wait until he’s home if the additional stimulation is soothing; a running dryer at bedtime can work wonders.)

·         Ear plugs and ear protectors can be helpful for times when the child can’t withdraw from the noisy environment. These are available in several forms, which vary in effectiveness.

·         A quiet room where the child can go and close the door can be a life-saver.

·         A rambunctious, shouting, fidgeting, noisy child might be an under-stimulated child. Putting on a little quiet music can do a lot to cut down weird “sound effects”, repetition of random words, a child talking to him- or herself, and other bothersome auditory behaviors.

·         One odd thing that can happen when a child’s hearing is severely overstimulated is that it can shut off to protect the system. (This can happen with other senses too, but I’ve heard about it most with hearing.) If your child seems to be ignoring you it might be a sensory shut-down, not intentional rudeness. Usually, getting the child’s attention through another sense is enough to restart the auditory system. Before getting angry try touching the child’s shoulder, or standing in his line of vision, and then try talking again.

·         Monitor your voice. It can be easy to raise the volume, pitch, and intensity of your voice when you are frustrated, but this might just make the problem worse if your child is already overstimulated. Practice speaking in a calm, slow, even, quiet voice, especially when your emotions are running high. Conversely, speaking in a more rapid, intense manner when your child needs to be energized can help get things moving.

·         Set aside a quiet space and/or time for homework. It can be especially hard to focus on studies with noisy siblings, pets, dinner preparation, etc.