You've Just Discovered Your Child has an Autism Spectrum Disorder – Now What?!

There is really no other way to begin this journey other than immersing yourself in your youngster's treatment. While it may be painful to say goodbye to the youngster you thought you had (i.e., a “typical” child with “quirks” rather than some “disorder”), you can say hello now to the youngster who needs you just as much - if not more - as you get to know his unique personality and development, and you can fall in love with your newly-diagnosed youngster with high-functioning autism (HFA) or Asperger's (AS) all over again in ways you could have never imagined.

In the beginning, be sure to look at your grief. It doesn't help to pretend to be positive when underneath you may be lonely, afraid or sad. The longing for the typical youngster or a typical existence may endure. You have to learn to live with that yearning.

Take some breaks for yourself. Your child’s treatment is important – but it isn't everything! As you get involved in the autism community, your isolation will lessen. Granted, it is not what you were expecting, but just like your youngster, it can be very rewarding and meaningful.

The initial period of learning about the disorder and all of the necessary therapies and treatments can be isolating. We, as parents, are also often sad at first, or angry that our life with a youngster who has an autism spectrum disorder is different than the one we dreamed of and different than the lives of most of those we see around us. Our ideal world is often very different from the world we actually live in. Still, there are many ways to work towards making your life more of how you want it to be.

Depending upon the functioning level of your youngster, there are many parent groups to join, special sports teams to coach, and class activities that you can be a part of. Sometime the issue reflects difficulty in accepting who your youngster is with his specific challenges and abilities. It may not feel normal or coincide with the dream you had for how your life would turn out.

As you begin to get more involved in the autism community, there will be more activity and company of others. This involvement often helps to make moms and dads feel more normal as it ironically provides more chances for typical activity and interaction with others. Over time, life and ideals change, and you will begin to dream new dreams for your real world.



It seems we always want the ones we love the most to understand us …our feelings, our life choices, our kids. Sometimes this is way more difficult than we would wish. Keep in mind that you are the expert on your youngster, and you know the best ways to deal with him. The truth is, if you are doing the best you can, you really don't have to prove anything to other family members or to anybody else.

In time, other family members will develop their own relationship with your "special needs" child and will hopefully follow your lead on some of the important learning and relationship issues. If you find that other family members and friends are negative around your child, or act in ways that negate his growth or self-esteem, then you may want to limit their interaction while you gently model more helpful ways to deal with your child and continue to share new or interesting articles/information on HFA or AS. This heartfelt process often takes longer than we think it should – steady persistence is paramount.

Note: Acceptance-levels vary among parents. When their child is recently diagnosed, some parents come to acceptance almost immediately -- and even feel a sense of relief that there is a name for what has been going on. Other parents need more time to arrive at acceptance, and that's O.K. Then there are a few parents who seem to never accept the fact that their child has special needs and struggle with the diagnosis for a life-time.

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book

==> Highly Effective Research-Based Parenting Strategies for Children with Asperger's and High-Functioning Autism


Comments:

•    Anonymous said... Well said. We were in the first group. Our first son is "neurotypical" and second has Asperger's. It's been a challenge @ times, but often times, they bring out the best in all of us. I wouldn't change it for the world!
•    Anonymous said... my son is 6yr and he has aspergers and adhd. his two brother (one older and one younger) dont understand really. but its fine. i wouldnt want it any other way. seeing what he has been thru gives me strength for my goals to go back to school.
•    Anonymous said... I actually felt relief when I recently got my 14 yr old daughters diagnosis .... It was my moment of of saying I was right all along
•    Anonymous said...I also had a "whew!" moment because I was convinced her issues stemmed from lack of parenting ability. I tried so many different things and she just didn't respond normally at all. when we got the diagnosis it all made sense, even if it didn't change her behavior, it changed the way we interpreted it and that has made so much difference.
•    Anonymous said... No grief here,well,not much that is.Always knew she was very special even before birth.It is however a very big job.Holidays are not much fun as she is very anxious.
•    Anonymous said... It has been just over a year since diagnosis. It took awhile to accept and I am not sure that I have truly accepted it. There are days that are difficult but there are also days where I things run smoothly. D is such an amazing boy with talents and skills that mesmerize me all the time. He sees things differently and he challenges me all the time. But , he is a gift my gift
•    Anonymous said... My 19 year old daughter went undiagnosed her whole life, until a doctor mentioned that there was a high possibility that she had Asperger's. I was really confused and denied that she was handicapped. But surprisingly, my daughter went and researched everything about the disorder, and she seemed to finally be at peace with her past troubles and trauma in public school (she was bullied). She found some clarity as to why she was so different back then and now. So if she accepts it, I'm learning to accept it too. I love my children no matter what happens and will always support them 100%, even if one of them needs a little more assistance in life.
•    Anonymous said... I have just had the diagnosis this week so a bit unsure what happens now. Would appreciate any guidance and also my child is 7 do things get more challenging or stay the same.
•    Karla Velazquez said... I have half a year with the knowledge that the school psephologist diagnosed my son with the aspergers syndrome, but now what he is in special needs class but that does not really help at home I dont know how to work with him properly and I am dont have any resources here. What do I do next to get help? I have 6 months now with the diagnoses that my 6 year old has aspergers according to the school physiologist but I dont know what the next step is. He is in a special needs class but that does not change the behavior at home I dont know what the next step is if any one can help

Post your comment below…
By

The Functional Analytic Approach to Behavior Modification for Kids on the Autism Spectrum

A “functional analytic approach” to developing effective behavioral modification in children and teens with ASD utilizes a process known as “functional behavioral assessment.” 
 
Functional behavioral assessment involves employing a variety of strategies (e.g., child-centered planning, treatment team meetings, systematic interviews, direct observations, etc.) to formulate hypotheses about why a child behaves the way she does.

In order to accomplish a functional behavioral assessment, several assumptions about behavior must be regarded as valid:

• Behavior has communicative value. Though it is generally accepted that all behavior has communicative value, it is important to remember that children with ASD generally do not have a behavioral intent to disrupt classroom settings, but instead problematic behaviors may arise from other needs (e.g., self-protection in stressful situations). Although children with the disorder typically have excellent language skills, their ability to use communication effectively in a social context may be limited. Inappropriate behavior may be the only available communicative response to difficult situations until other options are learned.

• Behavior is context related. All children demonstrate some level of variability in behavior across different settings. This is just as true for children on the autism spectrum. In fact, understanding how the environment impacts a child is one of the chief outcomes of a functional behavioral assessment. This information has particular value for preventive methods or to set the stage for teaching alternative skills. Effective behavioral support is contingent on understanding the child, the context in which he operates, and the reason(s) for behavior.

• Behavior is functional. Behavior serves a specific purpose(s). For children with the disorder, these functions may be expressed in highly idiosyncratic and often complex verbal ways.

Though there is some disagreement about the best way to conduct a comprehensive functional behavioral assessment, most clinicians are in agreement about the key outcomes of such an assessment. They are:
  • identification of the consequences that maintain behavior (i.e., once a behavior starts, what keeps it going over time?)
  • description of situations most commonly associated with the occurrence of problematic behavior
  • clear and unambiguous description of the problematic behavior(s)

A functional behavioral assessment should provide information that:
  • guides the development of supports that are logically connected
  • increases understanding of the child
  • describes the physical and social setting(s) in which the behavior occurs
  • describes the problem behavior itself

Once an understanding of problem behaviors is achieved, it is helpful to come up with a behavioral modification plan. A good behavioral modification plan includes focus on:
  • expanding beyond consequence strategies (e.g., time outs)
  • preventing the occurrence of problem behavior
  • teaching socially acceptable alternatives to problem behavior (especially alternatives that serve the same purpose as the problem behavior and therefore are more likely to be adopted by the child)



Next, the clinician should use a comprehensive format for outlining multi-component supports that addresses the following:
  1. Antecedent/setting event strategies
  2. Alternative skills training
  3. Consequence strategies
  4. Long-term prevention

Let’s look at each of these areas:

1. Antecedent/setting event strategy: The primary goals of this strategy are to prevent or reduce the likelihood of problem behavior and to set the stage for learning more adaptive skills over time. For example, many children on the spectrum have difficulty with noisy, crowded environments. Therefore, the newly arrived middle school student who becomes physically aggressive in the hallway during passing periods may need an accommodation of leaving class a minute or two early to avoid the congestion which provokes this behavior. Over time, the student may learn to negotiate the hallways simply by being more accustomed to the situation, or by being given specific instruction or support.

Key issues to address when discussing this strategy are:
  • What can be done to eliminate the problem (i.e., the antecedent condition)?
  • What can be done to modify the situation if it can’t be eliminated entirely?
  • Will the antecedent strategy need to be permanent, or is it a temporary "fix" which allows the student to increase skills needed to manage the situation in the future?

The importance of using antecedent strategies should not be underestimated. Kids on the spectrum often have to manage a great amount of personal stress. Striking a balance of short and long term accommodations through manipulating antecedents to problem behavior is often critical in setting the stage for later skill development.

2. Alternative Skills Training: The primary purpose of this strategy is to teach skills that replace problem behavior by serving the same purpose as the challenging behavior. For example, a student with the disorder may have trouble "entering" into a kickball game by asking to play and instead simply inserts himself into the game, thereby offending the other players and risking exclusion. Instead, the youngster can be coached on how and when to ask to enter into the game.

Here is a particularly useful framework for guiding efforts towards teaching alternative skills by examining the following three categories:

A. Equivalence training
B. General skills training
C. Self-regulation training

A. Equivalence training requires support persons to ask the following sequential questions:
  • How will alternative skills be taught?
  • What alternative skill(s) will be taught which serves the same function as the problem behavior?
  • What is the function of the problem behavior?

B. General “skills training” requires asking the following sequential questions:
  • How will alternative skills be taught?
  • What other academic, social, or communication skills will be taught that will prevent the problem behavior from occurring?
  • What skill deficits are contributing to the problem behavior?

C. Self-regulation training requires asking the following sequential questions:
  • How will skills be taught?
  • What events appear to be contributing to the child's anger or frustration in reference to the problem behavior?
  • What self-control skills will be taught to help the child deal with difficult/frustrating situations?

One particularly relevant means to teach alternative skills is through the use of self-management strategies. Self-management is a procedure in which autistic children are taught to discriminate their own target behavior and record the occurrence or absence of that target behavior. Self-management is a particularly useful technique to assist children to achieve greater levels of independent or even inter-dependent functioning across many settings and situations.

By learning self-management techniques, children can become more self-directed and less dependent on continuous supervision and control. Instead of teaching situation specific behaviors, self-management teaches a more general skill that can be applied in an unlimited number of settings.

Self-management strategies have particular relevance and immediate utility for children on the autism spectrum. The basic steps for teaching self-management are:
  • clearly define the target behavior
  • identify child reinforcers
  • design or choose a self-management method or recording device
  • teach the child to use the self-management device
  • teach self-management independence

It is also important for teachers to monitor their own behavior when working with "special needs" students. Each time a teacher reprimands a child for misbehavior, an opportunity to reframe the moment in terms of the child's need to develop alternative skills through a means such as self-management training may be lost.

3. Consequence strategies: Though consequences have traditionally been framed in terms of how they reduce problem behavior as a form of discipline, reframing consequences in terms of “reinforcement for achieving alternative behaviors” should be the focus for ASD kids. One way to reframe the use of consequences is to develop them as “planned responses to instructional situations.” This shifting of the use of consequences does not mean that negative consequences should be eliminated (especially in moments of crisis), but that multiple negative consequences are likely to heighten anxiety levels for the child and compete with teaching alternative skills.

4. Long-term prevention: In the presence of immediate behavioral concerns, it may be difficult to come up with a long-term approach to a child's educational program. However, it is critical that plans for supporting a child over the long-term be outlined from the beginning. Many supports with the most relevance for kids on the spectrum (e.g., specific accommodations, peer supports, social skills, self-management strategies, etc.) must be viewed as procedures that are developed progressively as the youngster moves through school. These are not “crisis management” techniques, but the very strategies that can decrease crisis situations from developing.

Those involved with the child will need to collaborate on a behavioral modification plan that is clear and easily implemented. Once developed, the plan will need to be monitored across settings. Inconsistencies in expectations and behaviors will only serve to heighten the challenges demonstrated by the child.

 
Resources for parents of children and teens on the autism spectrum:
 

==> Videos for Parents of Children and Teens with ASD
 
----------
 
By

Understanding Anger and Depression: 2-Minute Tip

Reasons behind anger and depression in Aspergers children and teens:



Resources for Parents:

By

Tailored Disciplinary Techniques for Kids on the Spectrum: Special Considerations

Disciplining High-Functioning Autistic (HFA) kids and teens can present some unique challenges unfamiliar to moms and dads of neurotypical kids. “Misbehavior” is often not misbehavior at all – rather it is a symptom of the youngster’s diagnosis.

So how does a parent know when - and how - to discipline the child with special needs? Here are some tips to help:

1. Employ “attachment parenting” skills. An HFA youngster can bring out the best and the worst in a family. By practicing attachment parenting and getting connected, the whole family can develop a “sixth sense” about the child, a quality of caring that no book or counselor will be able to give you. With all children, attachment parenting is highly desirable, but with an youngster on the autism spectrum, it's necessary and a matter of survival.

2. Avoid the use of negative labels, medical terms, or psychological jargon when talking to your youngster about his behavior. Target the behavior – not the youngster.



3. Be consistent. If you threaten without following through, your child will learn to disrespect and ignore you. You must follow through with consequences swiftly, and EVERY TIME the rule is broken. This way, your youngster can predict his consequences and make better behavior choices. When the consequences are inconsistent, changing, and infrequent, chaos will rule!

4. Beware of “over-attachment syndrome.” It is very easy for your whole life to revolve around your special style of parenting, to the extent that it becomes an end in itself. This is a “lose-lose” situation. You lose the joy of parenting, and you lose your ability to be flexible. Eventually, you will either burn out – or you will break.

5. Change your standards. Before a child is even born, moms and dads imagine what the youngster's life will be like (e.g., piano lessons, baseball stardom, graduating from college, etc.). Even with a typical youngster, you have to reconcile these dreams with reality as your youngster grows up. With an HFA youngster, this is a bigger task. You learn to live in the present. The milestones of the youngster's life are less defined and the future less predictable—though your youngster may surprise you! In the meantime, set your standards for your child at an appropriate level.

6. Create simple house rules and discuss them together. Have a family meeting where "family rules" are created. Simplify them according to the cognitive ability of your child (e.g., a rule like "no yelling or screaming when you're inside the house" could be simplified to "indoor voice"). Don't overwhelm your youngster with too many rules at first. Find ten that would cover the most problem behaviors. Later you can build from there.

7. Different doesn't mean fragile. While it is true you have to change your expectations of an HFA youngster, you don't have to lower your standards of discipline! It's tempting to get lax and let "special needs" kids get by with behaviors you wouldn't tolerate in other kids. He needs to know, early on, what behavior you expect. Many moms and dads wait too long to start behavior training. It's much harder to redirect an eighty pound youngster than a thirty pounder. Like all kids, this youngster must be taught to adjust to family routines, to obey, and to manage himself.

8. Different doesn't mean inferior. In a kid's logic, being different equates with being inferior. This feeling may be more of a problem for siblings and other children than for the developmentally-delayed youngster, at least in the early years. Most kids measure their self-worth by how they believe others perceive them. Be sure the youngster's siblings don't fall into this "different equals less" trap. This is why the term "special needs" is not only socially correct, but it's a positive term, not a value judgment. In reality, all kids could wear this label.

9. Don't compare. Your youngster is special. Comparing your youngster to others of the same age is not fair. Quit focusing on what your child is missing, and instead, started enjoying him for himself. Get rid of your tendency to focus on his “problem” – he is not a project, rather he is a person.

10. Give negative reinforcement for bad behaviors. Some say it's outdated, but the good old "timeout" works wonders for younger kids. Designate a chair or place in your house where the youngster must sit and think about his behavior. He should not have access to toys or television. Keep him isolated and apart from the action of the house, but close enough for you to observe him. Don’t talk to him except to say he must sit in “think time” for 5 minutes (or longer for older kids). If he leaves the seat, put him back and increase his time. "Now it's ten minutes." Use a timer that shows minutes counting down as he sits in the chair. If he yells or misbehaves in time out, start the timer over again. He must sit quietly in the chair for the allotted time. Be firm.

11. Give positive reinforcement for good behaviors. This is a step in discipline that is often overlooked, and yet can be the most effective. When your youngster hangs up his coat instead of throwing it on the floor, he should be praised. "That makes me happy when you hang up your coat! Good Job!" Special-needs kids often do well with charts, so consider giving a star when your youngster behaves well. Five stars could earn extra time playing his favorite video game.

12. Give your youngster choices. Initially, you may have to guide him into making a choice, but just the ability to make a choice helps the youngster feel important. Present the choices in your youngster's language, which may mean using pictures, pointing, and reinforcing your verbal instructions (which may not be fully understood) with visual ones. The more you use this exercise, the more you will learn about your youngster's abilities, preferences, and receptive language skills at each stage of development.

13. Reset your anger buttons. Your youngster will frequently do some things that exasperate you. If you get angry each time there is a “challenge,” you may find yourself in a perpetual state of madness.

14. Help your youngster build a sense of responsibility. There is a natural tendency to want to rush in and do things for a developmentally-delayed youngster. For these kids, the principle of "teach them how to fish rather than give them a fish" applies doubly. The sense of accomplishment that accompanies being given responsibility gives the youngster a sense of value and raises his self-worth.

15. Know your youngster's motivators. What does he love most? Candy? Favorite books? Video games? Movies? What are his interests? These are the privileges your youngster will earn with appropriate behaviors, and will lose with inappropriate behaviors.

16. Provide structure. Kids on the spectrum need developmentally- appropriate structure, but it requires sensitivity on your part to figure out what is needed when. Watch your child, not the calendar. Try to get inside his head.

17. Teach “frustration tolerance.” Help your youngster be frustrated and find ways to deal with it. You’re not going to be able to create a world in which your child is never angry, disappointed or frustrated. View these uncomfortable emotions as muscles, and if your child doesn't learn to flex them in socially appropriate ways, they don't develop. Children and teens on the spectrum really do need to learn how to be angry effectively - and how to be frustrated or disappointed effectively.

18. View behaviors as “signals of needs.” Everything kids do tells you something about what they need. This principle is particularly true with autistic kids.

19. Watch out for parental guilt. Moms and dads with autistic children often feel guilty. Many feel their youngster is getting a raw deal in the world, and they want to make it better. That's a very universal impulse.

20. Understand the difference between “accommodations” and “allowances.” Accommodations are things we do to help kids be capable …things we can put in place so that the playing field for the youngster is roughly equivalent to the playing field for a youngster without special needs. Allowances, on the other hand, are things like, "We need to let him take toys because he doesn't know how to ask for a turn yet." Allowances aren't helpful. Children with special needs have a right to struggle. That can be counter-intuitive since they're already struggling, but when we make things too easy for them, we are not helping them develop the belief about themselves that they are capable and they can learn to solve problems.

Disciplining a youngster who is "differently-abled" is likely to bring out the best and the worst in a mother or father. Caring grown-ups try to help a youngster make up for what's missing by increasing their love and attention, yet kids on the spectrum trigger special frustrations in us. Be prepared to run out of patience.

Most kids go through predictable stages of development. You know about when to expect what behavior and how long it will last. You know that two-year-old temper tantrums will diminish once the youngster learns to speak. Knowing you don't have to weather this undesirable behavior indefinitely helps you cope. With the developmentally-disabled youngster, stages seem to go on forever, as do the frustrations in both parent and child.

Parenting an autistic  youngster is a tough job. The ups and downs and joys and sorrows are magnified. You rejoice at each accomplishment, you worry about each new challenge. Welcome to the world of autism spectrum disorders :)


Resources for parents of children and teens on the autism spectrum:
 

==> Videos for Parents of Children and Teens with ASD
 
----------
 

Resources for Neurodiverse Couples:

==> Online Group Therapy for Men with ASD

==> Online Group Therapy for NT Wives

==> Living with ASD: eBook and Audio Instruction for Neurodiverse Couples 

==> One-on-One Counseling for Struggling Individuals & Couples Affected by ASD

==> Online Group Therapy for Couples Affected by Autism Spectrum Disorder

 ==> Cassandra Syndrome Recovery for NT Wives

==> ASD Men's MasterClass: Social-Skills Training and Emotional-Literacy Development

==> Pressed for time? Watch these "less-than-one-minute" videos for on the go.

 

Comments:

Anonymous said...This is a tough one!! Usually, I just sit my teen daughter down and ask why she did those things and then go on to explain why those weren't the right things to do. I find this helps vs jumping on her about being "wrong".

Anonymous said...My 13 yr old is so verbally abusive to us all, i would say bullying to his younger siblings. He has no control over his anger and then refuses to follow the instructions to go to his room for his chill out time he follows is around the house taunting and shouting, slamming doors and kicking walls.

Anonymous said...My son is 4; we've tried Magic 1, 2, 3, pared down versions of a token economy...but discipline is hard no matter what. Right now, I'm trying to focus on teaching him to "Wait, watch, and listen" before reacting. I think what I see is a need for him to build skills -- like that suggestion about tolerating frustration. I see it as more than that though -- from small skills like teaching him to take a breath when he gets frustrated to larger ones...

Anonymous said...This hit the nail on the head for us today. Thanks for posting :0)

Anonymous said...yes this definnitly applies to us. when my son acts out other people just don't get it, that its harder to disapline a child with aspergers.

By
Subscribe to: Posts (Atom)

Raising Kids with Autism Spectrum Disorder: Parents' Grief and Guilt

Some parents grieve for the loss of the youngster they   imagined  they had. Moms and dads have their own particular way of dealing with the...