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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

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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
 
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