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The DOs and DON'Ts After the Diagnosis

If you're like many moms and dads, your world changed when you first heard the word "Aspergers" or "high functioning autism" (HFA) used to describe your youngster. And, like any good parent, your first inclination may be to learn all you can, find the best doctors, and take aggressive action to “fix” the problem. Before you launch yourself into action, though, you might want to get a quick overview of what you're letting yourself in for.

What should you do – and perhaps more importantly – what shouldn’t you do?

The DOs—

1. Do start with the basics. Literally dozens of treatments are available for Aspergers and HFA. Start with the basics (i.e., treatments that are easily available, funded, and appropriate). For most families, the basics include speech, occupational and physical therapy. For younger kids, home-based therapeutic programs are often available. Preschoolers and school-aged kids may be offered therapies through the school system.

2. Do add therapies slowly. If you decide your youngster is not getting all he needs, you may be tempted to jump into many different interventions at the same time. Of course, there are interventions that have an immediate impact for the better or worse, including some pharmaceuticals. Most treatments, however, require days, weeks or even months to really make a difference. By making changes slowly and observing your youngster's reactions, you can see what works and what doesn't.



3. Do avoid information overload. Thought you would “read up” on Aspergers in just a few days? Truth me, plenty of parents wind up spending unending weeks and months reading every website, blog and book, and attending every conference – but at the end, they're more confused than when they started. It's a good idea to inform yourself about the options, but one or two good books (see below) will give you a good gist without overloading you with 10,000 different opinions about everything from causes to treatments to adult life with Aspergers or HFA.

4. Do determine your youngster's needs. What exactly are your youngster's needs and deficits? We are talking about a spectrum disorder, which means that your youngster may have many needs – or just a few. Does your youngster have speech delays? Sensory issues? Social deficits? By asking all of these questions of your doctor and your family and local support groups, you can start to create a picture of the services your youngster might need.

5. Do limit your interaction with other parents of kids on he autism spectrum. Of course, it's a good idea to reach out and get to know other moms and dads who are in your situation, especially as you look into local therapists, schools, funding, etc. But be aware that parents with kids on the autism spectrum are often passionate about the therapists and treatments they've selected. And it's easy to get overwhelmed as parents insist that their approach is the only approach. The truth is that no one knows the best approach for your youngster. Every child with the disorder is different!

6. Do read and ask questions. A huge number of websites, books and resources are available. Select a few and dig in. Find a local support group or an online group and get involved (I recommend the “Parenting Aspergers Children - Support Group on Facebook”). Learn how other moms and dads have managed situations similar to yours.

7. Do remember that your youngster has not changed. Yesterday, your youngster was not labeled with a disorder. Today, he has been handed that label by a professional. But the label doesn't change your youngster or your love for him. All the good things you saw in your youngster yesterday are still there today. Part of your job will be to help him build on those strengths to compensate for the challenges ahead.

8. Do remember to relax. Your youngster's diagnosis is important. But, so is your own life, your other kids, your health, and your finances. It's o.k. to take a break from time to time. Only when you're at your best can you hope to give your youngster all he needs to grow, develop and enjoy life!

9. Do use your autism resources. Now that you know what your youngster needs, you need to determine whether those therapies are immediately available to you -- and if they are, how to put them in place. If you are in a rural area, you may have fewer options available than if you're in a city. Your medical insurance may cover only a fraction of the therapies you've discovered. Your school district may have specific options available. Once you know what's immediately available, you can set up a program that suits at least some of your needs.

The DON’Ts—

1. Don’t panic. For most moms and dads, a diagnosis is like a kick to the groin. You feel breathless and overwhelmed. Your world has been turned upside down. But remember that the disorder, despite its many challenges, is not a dangerous situation. There's no need to panic! You and your entire family will benefit if you can think clearly and calmly.

2. Don't assume you always know best. Moms and dads are usually good at observing, describing and understanding their kids. Parents also, of course, need to advocate for their kids in school and elsewhere. But even parents don't always know what will work for their youngster, and often a educator or therapist will discover a talent, need, ability or challenge that surprises you. In short, parental instinct is wonderful, but it has its limits. And by insisting that you always know what your youngster needs, you may limit the options available to him.

3. Don't choose treatments based solely on the scientific research. In the best of all worlds, treatments are selected on the basis of multiple independent double-blind studies. If only that were possible in the autism world! In fact, few treatments for autism spectrum disorders have been tested in this way -- and even those that have are questioned based on the quality of the research. That doesn't mean that none of the treatments are helpful. only that they haven't been fully researched. As a result, it's probably worth your time to look into several of those that seem most available and relevant to your youngster.

4. Don't choose treatments under pressure. As you enter the autism world, you will meet educators, moms and dads, doctors and therapists who are absolutely certain they know what's best for your youngster. With all the best intentions in the world, they will absolutely insist that you take your youngster to Dr. X, or start your child on this treatment or that treatment. Take notes, and do your own research. If the treatment sounds too good to be true, costs too much money, or has no research behind it, you're under no obligation to say "yes" – nor are you under any obligation to report back to the insistent professional in your life.

5. Don't forget to breathe. Despite media hype to the contrary, it is extremely unusual for a youngster to be accurately diagnosed with the disorder - and then "recover" perfect normalcy. Much of the time, though, if your youngster is receiving solid one-on-one therapy, support, and love, he will develop skills and relationships – and continue to do so throughout life. In other words, treating Aspergers or HFA isn't about rushing to a cure. Instead, it's about finding a set of supports and a way of life that will work, with tweaks and adjustments, over time. No matter how quickly you move, and no matter how much money you spend, your youngster is likely to remain autistic to some degree with all the ups and down that go with that diagnosis. So take time to enjoy your youngster, your spouse, your family, and your life. Get some fresh air. Remember that your youngster is not in danger of life or limb, and that he is still the same person you have always loved.

6. Don't obsess about the disorder. It's easy to get obsessive. In fact, it's surprisingly easy for parents (especially moms) to focus almost entirely on their youngster's problems. Unfortunately, obsession can create more problems than it solves. More than one marriage has fallen apart as the result of one spouse becoming too focused on the issues to attend to the marriage. Many households have gone broke in the attempt to provide every treatment, no matter how costly or obscure. And it's common for siblings of the "special needs" child to feel unfairly neglected by parents who seem to care only about supporting the “special needs child.”.

7. Don't overload your youngster or yourself. There is an understandable desire to see results from your efforts. And with so much emphasis on early intervention, moms and dads often want to see their kids "fixed" right away. But it's best to avoid the temptation to leap into multiple therapies with the hope that something will work. Not only will you and your youngster be exhausted, but it may be impossible to know what's really working. Remember that there really is no "window of opportunity," and your youngster will continue to learn and grow throughout his life.

8. Don't rush into action. The research says that early intervention is important. By the same token, however, these kids grow and develop over time just like everyone else. It's tempting to leap into as many therapeutic treatments as you can. But until you know what's best for your youngster, it's a good idea to take it slow.

9. Don't worry too much about the "whys" of the disorder. There are over 24 theories of what causes it (e.g., cell phones, WiFi, pitocin, mercury poisoning, older fathers, genetics, artificial dyes and sweeteners, etc.). In short, unless your youngster is actually suffering from a physical problem (e.g., food allergy, lead poisoning, etc.), worrying about the causes of the disorder will just drive you crazy.

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

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Do you need the advice of a professional who specializes in parenting children and teens with Autism Spectrum Disorders?  Sign-up for Online Parent Coaching today.

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Reducing Parental Stress While Raising Children on the Autism Spectrum

Question

My wife and I feel like the world's worst parents. Our 12-year-old daughter (high functioning) pushes us to the breaking point daily. We try to manage her behaviors appropriately, but we often end up yelling. We know her behaviors are not her fault. But in the heat of the moment, our best intentions are overwhelmed by 12 years of frustration. We have talked to a psychologist for family counseling, but just got a lot of sympathy. We love our daughter and want to do a better job.

Answer

The first thing you have to realize is that you are not the world's worst parents. The fact that you are seeking help is evidence of this. Over time, relationships develop patterns, and sometimes these can be self-defeating. Yelling is the result of your frustrations with a situation that seems to have no solution at the time. I remember how angry I was when my Aspergers grandson (high functioning) was 9-years-old. I had a hard time accepting his Aspergers-related behavior. I walked around with a chip on my shoulder – always ready to correct him by yelling at him.

In terms of behavior, you and your wife can learn some straight forward behavioral techniques that will help. You need strategic guidance – not just sympathy. I appreciate your courage in being honest about how you feel. Anger, one of the most intense and least understood human emotions, is probably the scariest and most socially unacceptable emotion to own up to. It often arises with the thought, "Why me? Why did I do to deserve this?" It is normal for moms and dads of "special needs" children to get frustrated and direct anger at their youngster, themselves, each other, the doctor, mercury, the local school district, etc. Many parents in your situation also feel guilty (e.g., “It’s probably my fault that my child has an autism spectrum disorder”).



As with most negative patterns of behavior, it is likely that you promise yourself on a daily basis that this time you will not yell, but at this point your relationship with your daughter ends up in the same place because nobody can figure a way out of the trap. Things may need to be set up differently in your home to help you optimize your relationship with your little girl. Your daughter may be reacting to things that many of us would not realize or understand. She may not understand or be able to let you know what it is. The bottom line is this: you may simply lack some of the skills necessary for raising an autistic youngster, and that is not surprising given the level of complications that these kids often bring.

Some of the behaviors of kids with high functioning autism (HFA) and Asperger's can push any one of us to our breaking point. It is important to remember though, as you stated yourself, that your daughter is not purposely pushing you to your breaking point, just as you are not purposely "breaking."

Do you need the advice of a professional who specializes in parenting children and teens with Autism Spectrum Disorders?  Sign-up for Online Parent Coaching today.

So what can be done?

First, be sure to watch out for a faulty belief system (i.e., negative self-talk) that contributes to parental stress (which results in much anger, frustration, and yelling). For example:
  • Giving 100% every day is what every parent is expected to do.
  • I refuse to let anyone else care for - or influence - my ‘special needs’ child.
  • I should always deny my own needs for rest and recreation in order to help my child.
  • I should do everything for my child and not require her to take on responsibilities she can’t handle.
  • I should feel guilty if I need a break or want some attention for myself.
  • I should spend every possible moment with my child.
  • I will be seen by society as a good and honorable person because of the effort I put into being a good mother/father.
  • My child should “like” me.
  • My child should appreciate everything I do for her.
  • One role in my life (i.e., the role of parent) can satisfy all my needs and can support all my dreams.
  • Other people must see me as a good parent, able to handle everything.
  • The success or failure of my child depends entirely on me.

Any of these beliefs (or ones similar to them) will directly translate into anger and frustration. Here are some ways to counteract a faulty belief system:
  • Be able to live in the presence of imperfection.
  • Boost your own self-confidence.
  • Develop a support system by sharing honestly your feelings of frustration, anger, and concern.
  • Develop the positive belief that you can control destiny.
  • Be selfish (in a healthy way).
  • Free yourself from needing outside approval.
  • Learn to catch yourself when you say negative statements to yourself and challenge them.
  • Learn to tolerate change (because kids with Aspergers and High-Functioning Autism change a lot over time).
  • Practice positive thinking by daily affirmations; repeat positive messages to yourself over and over.
  • View love, affection, and approval from your child as a bonus – not a “need.”
  • See the positive side of stress.
  • Understand anger and use it constructively; control anger by controlling wishes.

Other things that contribute to parental stress:
  • Coping with difficult autism-related behaviors
  • Dealing with the school about your child's placement or program
  • Educating neighbors and relatives about your child's issues
  • Financial pressures
  • Getting your child in the right school
  • Home-schooling your child
  • Helping her with homework
  • Helping siblings understand the problems associated with the disorder
  • Working with your “not-too-involved” spouse on child management
  • Dealing with unexpected meltdowns (especially in public)

How to cope with parental stress associated with raising a child on the spectrum:

1. Analyze problems thoroughly:
  • Describe the problem with a specific statement.
  • State how it could be worse and how it could be better.
  • Determine what is keeping it from getting better.
  • Propose solutions for the things over which you have control.
  • Plan action.

2. Use time management:
  • List priorities – both short and long term.
  • Do a time use audit.
  • Compare time use with priority of goals.

3. Develop assertiveness:
  • Know your limits, and be realistic about what you can accomplish. Say no to unreasonable demands.
  • Learn about your child's problems and needs so that you can be an active participant in meetings with school personnel and can offer suggestions to coaches, neighbors, and relatives.

4. Address physiological stressors:
  • Recognize that children with special needs require exceptional amounts of energy. In order to replenish energy, parents need to be sure they get sufficient rest, eat well balanced meals, and exercise vigorously.
  • Learn meditation or relaxation techniques to use when they feel stressed, anxious, or fatigued.

5. Use other stress-reducing strategies:
  • Find a place of retreat (e.g., the bathroom or the car), and go there for cooling off when the tension is very great.
  • Follow your physician's advice.
  • Hire out or trade off chores that are time consuming and distasteful. Sometimes it is well worth paying someone else to do those chores so that you have more time and energy to devote to yourself and your family.
  • Make recreation and relaxation a priority, so that you have some time off during the week. Studies have shown that psychologically healthy families have “less-than-perfect” housekeeping.
  • Team up with a spouse or friend for time off.
  • Use relaxation tapes or exercises to calm down after a hectic day.

It may help you to think about what other feelings you may have besides the frustration and the anger (e.g., fear, sorrow, worry). What would be there if the anger disappeared? Moms and dads like you are trying to make sense out of what has happened (e.g., "If we are good parents, then how come we can’t get our child to behave appropriately – even if she has this ‘disorder’?"). Moms and dads of HFA and Asperger's children need to allow themselves to experience anger, to cry, and to scream. It is all part of the grief process. Indeed the disorder can be tough to live with, but trying to deny or minimize how hard it is to have such a youngster only prolongs the suffering you are describing.

Anger is a reflection of the hurt and fear. Gaining perspective, along with time and compassion, can help curb the associated frustrations. It is probably worth another try to connect with a mental health professional who can guide you through this. If nothing else, your daughter will teach you to be patient with what you can’t change.


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PARENTS' COMMENTS:

•    Anonymous said… ABA Therapy has been a life changer & life saver for our family.
•    Anonymous said… All these so called therapists cost money its easier said than done ,my son and daughter in law have a massive problem with their son no help here in nz its shocking they love him as i do but at times who knows what triggers him off but he also brings them to breaking point. The temper is unleashed and its shocking so I feel sorry for you as our country is so far behind the times its not funny.
•    Anonymous said… Excellent tips for the guilt ridden parent. Thank you!
•    Anonymous said… For therapy, seek out a Cognitive Behavior therapist who has worked with Aspie teens.
•    Anonymous said… I can so relate to this. Our daughter is 9. She is not yet diagnosed but I am convinced she has aspergers. It's tearing our family apart. And the reality is that not even good, conscious parents can deal with this alone as a team. It really takes other people, professionals community and family. So far we have had zero help or support. professionals have not made the diagnosis hence we are not getting appropriate professional support, family writes her off as a brat and blames our parenting for her meltdowns and rigid thinking. Community rejects her and does the same as family. I guess if nothing else, take heart that you as a couple are at least both on the same page and fighting for her. I often feel like I am fighting for her alone as my partner frequently forgets her challenges and adopts the same attitude as everyone else. His responses to her frequently exascerbates her issues. As patient as I force myself to be majority of the time I get to the point of yelling as well as breaking down to tears. But they are our children and we have to keep going and fighting for them no matter what. There is no other choice. I have to remind myself daily that difference is not deficit and that her wiring is beneficial in so many ways to our rigidly conformist society. Someday she will find her niche and thrive. I have to believe our girls came here to change this world. It needs a change.
•    Anonymous said… I do not engaged with my son in a meltdown. I will say to him I understand. (I do too) He has 2 rules keep his hands and mouth to himself. I stay matter of fact. He goes to his room to calm down. When he is calm we talk about what happened and why. write down the rules make a plan. If he gets verbal to me He looses computer for the day. I really think it is a lack of not knowing the right way to communicate. He is 16 now and much better. No more 4 hour meltdowns. It does get better. Hang in there.
•    Anonymous said… I feel you... Going through the same thing with my ASD Miss 7 frown emoticon
•    Anonymous said… If you haven't addressed diet...I highly recommend...removing dyes and gluten and minimizing sugars were game changers...helped reduce frustration and what we call "tunnel vision". We also do ABA...it gives him practice on appropriate skills and makes him more aware of his own being. We also incorporate essential oils and it has drastically changed his moods...less meltdowns and anxiety!! Good luck! Jr High age is some of the most difficulty years for an aspie kid is what we hear over and over! Try your best to create your own rules where you disengage by using breathing technique or counting or whatever...so you aren't wasting negative energy and increasing your own stress! I have a phrase I say over and over in my head when I find myself overwhelmed or engaging in useless behaviors like yelling "relax and be productive...relax and be productive " I repeat till I feel calm and generally that gives my son time as well...and I tell him...I need a minute because I love you and my only goal is to help!
•    Anonymous said… I've found more help on fb sites than any doctor. Start with one issue to work on at a time so it's not overwhelming. And keep asking fb sites questions. We are the ones dealing with it and can instantly give ideas. Our 12 yr daughter has been taken out of school and placed into a Montessori type school that has only 25 kids K-8th grade. That helped a ton. After a year when she ages out I don't know what we'll do, probably homeschool and get her in small group clubs/activities . Also, a chiropractor has helped us greatly, as well as a sensory specialist
We also use quality probiotics, vit D, omegas, and no dairy . Reducing stress for all of us has been our priority
•    Anonymous said… My 15 year old son was just diagnosed this past February with aspergers so needless to say we missed out on all the early interventions. Now we are dealing with an out of control teen with melt downs. He is now in an inpatient facility awaiting for a residential treatment program to be approved. Does anyone know of any good facilities on Pennsylvania.
•    Anonymous said… My son is 14 and just recently got diagnosed. I choose my battles wisely. I just got him to do dishes. He wont do them all but he will do one sink full. I build from there.
•    Anonymous said… Our daughter was diagnosed at 12. One thing we have found that works well, on the advice of her therapy team, is to give very concrete answers when she asks for something. Not knowing if or when she'd get something she was asking for would crank up her anxiety. For example, she'd ask when she'd get to go xyz. I'd tell her, we'll see. Her behavior would deteriorate and she'd get cranky. Now I tell her, at 4PM or no earlier than 4PM, I will have a definite answer then. Somehow that calms her down. If she continues to ask, our code word is "badgering". She understands, based on conversations we have when she's in a relaxed mood, that if she badgers, she won't get what she wants at all.
•    Anonymous said… Read the posts on this page and ask a ton of questions. My son was not diagnosed until he was 11. I researched where I could take him for testing and diagnoses. It was a true life saver. I had an older daughter who put me through hell, but then I had a son I was losing and had to learn how to be HIS parent. I stopped listening to others about what I should be doing and started asking others on here how they handled it. It completely changed our lives. The normal parenting rules do not work for these kids. But once you start working together these are the biggest blessings ever. My son is easy now.
•    Anonymous said… we need this today. Read some of the comments. We are not alone.
•    Anonymous said… Believe me, you have an army of friends here that are exactly the same. Its tough...we try our best and at the end of the day we love our children despite what we go through.
•    Anonymous said… Hang in there and know you're not alone! Best advice I was given was when your child yells at you, she wants the negative feed back of you yelling back. Don't give in. Tell them "I love you too much to argue", or "I only argue on Tuesdays at 2:30 pm" just something over and over that they understand you're not going to engage with them. Be a robot. Take the emotion out of it. It's SOO hard, but important and it works.
•    Anonymous said… It may help to have some comforting items in the area to distract or something she can take her anger out on. We have pets so that helps my daughter disengage. Also she uses noise cancelling headphones to calm herself. However, at the beginning of dealing with her outbursts I would leave stacks of paper for her to tear up and stomp on when she was angry or punch pillows. Allowing her to express her emotions deliberately on items we had agreed upon together seemed to work for a while. But sometimes she would refuse to use this strategy for her anger and I would be at a loss. Hang in there!!!
•    Anonymous said… My 10 yr old is just in the process of a diagnosis so I am very new to this. A big problem I have is she won't allow me to step away. She will follow me!! Any tips on getting her to understand we need to break and calm down?
•    Anonymous said… SAME....I feel like we've lived 15 years of hell & I hate feeling soooo depleted & exhausted.....I feel like I can't even enjoy my son & being a mom because everything is chaos 24/7......know you're not alone!!! It's the worst feeling in the world 😢 😢 😢 😢
•    Anonymous said… Talk to someone who doesn't just offer sympathy, but someone who can suggest coping skills for you as parents, siblings, and your child (struggling the most). Sometimes you have to try out a few therapists before you find someone who is more effective. My daughter's therapist invites family members in on sessions to have family discussions on how everyone can work together to manage emotions and frustrations on all sides. Also, deep breaths. Sometimes my 9 year old ADHD/Aspergers daughter drives me to the brink of insanity....I have to always remember to step away and stop speaking. Breathe. Create space. When the heat of the moment passes, everyone can communicate more logically and rationally about what led up to the situation and how to cope and/or prevent the next occurrence. It sounds like you all have the right mindset and heart is in the right place, these things take time and effort and so much patience. But oh how lucky our kids to have us rock star parents  :D hugs xo
•    Anonymous said… Thanks for posting moms...everyday is a struggle.. It's hard not to lose it  😔
•    Anonymous said… We constantly have to remind ourselves that no one is perfect. The frustration can get off the charts but we love our kids and sometimes we have to go loud. You are not alone.
•    Anonymous said… You are definitely not alone and we are all only human


Post your comment below...

My child has been rejected by his peers, ridiculed and bullied !!!

Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

Click here to read the full article…

How to Prevent Meltdowns in Children on the Spectrum

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's or HFA child is totally out-of-control. When it ends, both you and your child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

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Parenting Defiant Teens on the Spectrum

Although Aspergers [high-functioning autism] is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager on the spectrum are more difficult than they would be with an average teen. Complicated by defiant behavior, the teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

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Older Teens and Young Adult Children with ASD Still Living At Home

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with ASD face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

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Parenting Children and Teens with High-Functioning Autism

Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

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to read the full article...

Highly Effective Research-Based Parenting Strategies for Children with Asperger's and HFA

Become an expert in helping your child cope with his or her “out-of-control” emotions, inability to make and keep friends, stress, anger, thinking errors, and resistance to change.

Click here for the full article...

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