HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

Education and Counseling for Individuals Affected by Autism Spectrum Disorders

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How Asperger's [High-Functioning Autism] Is Diagnosed

“My husband and I suspect our 7-year-old boy has Asperger’s, but admittedly, we have procrastinated having him diagnosed for fear of labeling him with something that will follow him the rest of his life. Should we pursue a formal diagnosis simply based on our suspicions? And how do children get diagnosed with Asperger’s?”

It’s better to know than not to know. If your child has Aspergers and nobody knows it, the disorder affects him anyway. If parents and teachers do know, they can help minimize the negative impact and leverage the positive. Without the knowledge that you have Aspergers, you tend to come to some negative, misguided conclusions (e.g., “I’m a failure” or “I’m strange” or “I’m a disappointment” etc.).

Aspergers and High-Functioning Autism diagnosis is often a two-stage process:

1. The first stage involves general developmental screening during well-child checkups with a doctor or an early childhood healthcare provider. Kids who show some developmental problems are referred for additional evaluation.

2. The second stage involves a thorough evaluation by a team of doctors and other health professionals with a wide range of expertise. At this stage, a youngster may be diagnosed as having Aspergers or another developmental disorder. Kids with Aspergers can usually be reliably diagnosed by age 2, though research suggests that some screening tests can be helpful at 18 months or even younger.

Many moms and dads minimize the signs of Aspergers at first, believing that their son or daughter will "catch up" with his/her peers. While parents may be concerned about labeling their youngster with Aspergers, the earlier the disorder is diagnosed, the sooner specific interventions may begin. Early intervention can reduce or prevent the more severe disabilities associated with Aspergers. Early intervention may also improve the youngster's IQ, language, and everyday functional skills (also called adaptive behavior).

A well-child checkup should include a developmental screening test, with specific “Autism Spectrum Disorder (ASD) screening” at 18 and 24 months. Screening for Aspergers is not the same as diagnosing Aspergers. Screening instruments are used as a first step to tell the doctor whether a youngster needs more testing. If your youngster's doctor does not routinely screen for ASDs, ask that it be done.

For moms and dads, your own experiences and concerns about your youngster's development will be very important in the screening process. Keep your own notes about your youngster's development and look through family videos, photos, and baby albums to help you remember when you first noticed each behavior and when your youngster reached certain developmental milestones.

Sometimes the doctor will ask the mother or father some questions about the youngster's symptoms to screen for Aspergers. Other screening instruments combine information from caregivers with the doctor's own observations of the youngster. Examples of screening instruments for toddlers and preschoolers include:
  • Social Communication Questionnaire (SCQ)
  • Screening Tool for Autism in Two-Year-Olds (STAT)
  • Modified Checklist for Autism in Toddlers (M-CHAT)
  • Communication and Symbolic Behavior Scales (CSBS)
  • Checklist of Autism in Toddlers (CHAT)

To screen for Aspergers in older kids, the doctor may rely on different screening instruments, such as:
  • Autism Spectrum Screening Questionnaire (ASSQ)
  • Australian Scale for Asperger's Syndrome (ASAS)
  • Childhood Asperger Syndrome Test (CAST)

The second stage of diagnosis must be thorough in order to find whether other conditions may be causing your youngster's symptoms. A team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals experienced in diagnosing Aspergers may do this evaluation. The evaluation may assess the youngster's cognitive level (i.e., thinking skills), language level, and adaptive behavior (i.e., age-appropriate skills needed to complete daily activities independently, for example eating, dressing, and toileting).

Because Aspergers is a complex disorder that sometimes occurs along with other illnesses or learning disorders, the comprehensive evaluation may include brain imaging and gene tests, along with in-depth memory, problem-solving, and language testing. Kids with any delayed development should also get a hearing test and be screened for lead poisoning as part of the comprehensive evaluation.

Although kids can lose their hearing along with developing Aspergers, common Aspergers symptoms (e.g., not turning to face a person calling their name) can also make it seem that kids cannot hear when in fact they can. If a youngster is not responding to speech, especially to his or her name, it's important for the doctor to test whether a youngster has hearing loss.

The evaluation process is a good time for moms and dads to ask questions and get advice from the whole evaluation team. The outcome of the evaluation will help plan for treatment and interventions to help your youngster. Be sure to ask who you can contact with follow-up questions.

The Aspergers Comprehensive Handbook 
 

COMMENTS

•    Anonymous said…  Different diagnosis but I always had BPD and ADHD since a child and found it very hard in school and growing up because my parents refused me to be diagnosed and didn't agree with medication, which meant I always got in trouble at school and never got the support I needed, I was just seen as a problem child. I think life would have been a lot easier for me if I just got the support and diagnosis when I was a child. I always knew I was different from the other children and didn't know who I was which lead to depression, once I was diagnosed I felt a relief and got the support I needed. To this day I still don't forgive my parents for their decision.
•    Anonymous said…  My son was first diagnosed with SPD and was seeing an occupational therapist. I asked her one day about having him tested for aspergers( as his teachers were concerned it was more than SPD...he had ALOT of problems at school..especially with authority, changes in routine, even hitting teachers when upset).. Her response to me was" why do you want him to have a label?" MY response was " he already has a label..he's the bad kid that no teacher wants in his/ her class" I'll NEVER forget that and AM so glad he was diagnosed so that he has advocates and teachers can learn more about autism and aspergers and help these kids become better students! All of the help he's received has made a tremendous difference in his behaviors!
•    Anonymous said… Diagnosis = Support. Teachers: if they are aware and have information of your child's needs they can take a different approach if necessary. Community: a little bit of awareness and acceptance go a long way in helping your child feel part of their community. People that work in our local shop are aware of our child's diagnosis and are wonderful in supporting him and me by helping him to to shop and keep their eye out if he wonders off etc. Government funding for therapy: therapy is necessary and expensive! You owe it to your child to have an assessment. He deserves the chance to be the best he can be and you need and deserve the support to help him do that. It hurts to be told there is something wrong with your child that you love so much and it will be a process to accept it, but a year down the track when you see how far he's grown and improved you will know you've made the right decision. And they might just say " No, we don't believe he's on the spectrum. ". You need to know! Good luck. And remember there is lots of support here for you and your family x
•    Anonymous said… Get the diagnoses.
•    Anonymous said… He is who he is a label doesn't change him it just makes its a lot easier with everything to help him helps you
•    Anonymous said… I agree. When you have a diagnoses the Government pays the school your child attends for extra help in the classroom. You don't have to tell anyone else about your son's "label" if you wish not to. Depending where you live (I'm in Australia) may depend on how the process begins. With us my doctor started the process writing a referral to a Paediatrician. After assessing, he said aspergers & referred us onto a psychologist. After assessing, he said aspergers. Then back to Paediatrician again for all outcomes. We then got documentation & this helped with the cost for therapist. Good luck.
•    Anonymous said… I am raising a 10 year grandson. He started reading at 4,he always did not like socializing with others and never liked loud noises. He was held back in second grade his teacher labeled him lazy and told me to get him to bed earlier.We changed schools and they said the same. I it turns out he has hashitothyroiditis and low vitamine d so with synthyroid and vitamine d every day.The his adnoids and tonsils were removed
•    Anonymous said… I don't understand your concern about a "label"? Don't you want the best for your child? If so, wouldn't you want to understand how his mind and body function so that you and all around him can support him appropriately? If he is struggling at school, then your school (if public) should have the resources to start the evaluation process. Talk to his teacher or the school's social worker as a starting point. You can also pursue a diagnosis privately, look for neurobehavior therapists in your area.
•    Anonymous said… I hate it when people say label.. Its not a label, its an insight how to treat/help someone who has different ways/needs/understandings to others...
•    Anonymous said… I haven't labelled my child......I have helped him understand why he is struggling. I have given him a ticket to the best life he can achieve.
•    Anonymous said… I suffered mental illness from the age of twelve. I wasn't diagnosed and "labeled" with bipolar disorder until my mid twenties. After that, my doctors knew how to treat me and my quality of life improved significantly. When my son showed signs of a problem, I didn't wait. I was eager to know the problem so I could help him find solutions. I think we would all benefit if people would be more open and less judgemental. My two cents.
•    Anonymous said… I too was scared at having my little guy labelled (being in a private school, what would they say!?!).....it was the best thing I could have done! His school has been fantastic and the support/help is incredible!
Originally the mums thought he was just a naughty child, now they understand and accept him!.....People in general need to be more accepting of our special, gifted children. They are not naughty, should not be subjected to different behaviour, but given the correct respect/understanding that they deserve/need! It's a long process being diagnosed but it's well worth it and you are doing the best for your child!
Good luck hon X
•    Anonymous said… I was skeptical to have my son diagnosed as well. Not because of the label, I just felt we didn't need it-I had the mindset of: this is the way he is, and we love him knowing all of his quirks, and anyone who doesn't understand doesn't have to. BUT we have recently gone through the process, and the amount of resources that are available to help him is incredible! From help and understanding with the school, to learning knew tricks on parenting, to social skills classes-it's made a big difference. We've also seen a lot more acceptance from people (which in a way makes me upset, because some of these people should have been accepting before-but it's better for him now, and ill deal with my issue separately), we feel more comfortable with how we parent, and advocating is easier because now we have a whole team to help us through everything. I can very honestly say that I wish we had done it sooner.
•    Anonymous said… I'm glad my son has his label. It means he gets the help and assistance he needs and people understand better.
•    Anonymous said… It is a double edge sword. We are in the process. My son is 6. Two independent child psychologists have said ASD but now the school's educational psychologist is trying to label him as severe ODD. I haven't found this process helpful at all.
•    Anonymous said… It will be easier to know now, so you can learn how to better help him then fight until he is a teenager.
•    Anonymous said… 'Labels' open doors! The longer you leave 'starting the process' towards a diagnosis, the longer you put off vital early intervention. It's NOT for you, but your child! Parents don't realize just how lengthy the process is.
•    Anonymous said… My son is 6 and was just diagnosed. We had to have a psychologist and pedestrian sign off on it. They worked together with his school for 6 months to see whether it would effect his day today life to much. If it wasn't going to they weren't good to label him.
•    Anonymous said… Nobody what's to label their child. I was one of those parents who was afraid to get the "label" as we call it. But getting over that fear and understanding what the positive are. You move on from it. My son needed a "label" because it open so many doors for him. My health insurance covered more and there were services, I never knew was out there. Taking that step is a parents fear not the child's fear. Do what going to help you son not hurt him.
•    Anonymous said… Outside of the teachers and staff who you tell is up to you.
•    Anonymous said… sleep apnea showed he only sleep 3 hours a night.Got to say he is doing better,grades are three A and 3 b, but I ask the teacher about Asperger if see thought he had it. She has taught kids 16 years and has a son with asperger, her answer was yes.She advised me not to have him tested he will be labeled.This eats at me because for years this child has been misunderstood and as parents and myself I am his mom and granny I feel if I do not ask a doctor I will be letting him down. He needs to understand it as much as I do.So I will have him tested.I only hope you will also.
•    Anonymous said… This is how I see a Dx. My son's Dx is that he is Jaxon, but a Jaxon with quirks and challenges I need to understand. I didn't want to push or discipline him for things he wasn't capable of doing. The Dx isn't your child just a better begining to work with them. Best of luck
•    Anonymous said… Unfortunately to get help in uk education system having a "label" is the way forward. Don't be afraid of it... If it helps then it can only be good. "Labels " are easily got rid of as child gets older.
•    Anonymous said… We all have challenges! If your child has autism chances are the children around him already have some idea that something is off. The social help for kids with ASD is crucial.
•    Anonymous said… Yes you should because if you don't there is not a school or a medical system out there that will help your child with out that label for extra support, unless your willing to pay $$$ a week going private.
•    Anonymous said… Yes, most definitely yes get a diagnosis. It can be tough to accept; but the best thing to do is that if your child is determined to fall within the ASD; don't allow your child to use it as an excuse. Your child is not Autism; your child is Billy, or Sally or whomever they may be. She/she may have some limitations; but their abilities are incredible. It's okay to say "Billy, you do have Aspergers syndrome; and some things may be harder for you to understand; but you're smart and able and we'll figure it out together"; or something along those lines to encourage your child they are not broken. Some things may be harder to grasp; but it can be done and it will be done with proper therapies.

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30 comments:

Anonymous said...

YES! Definitely DO seek out some help and get a diagnosis. We felt the same way with our son, but thanks to encouragment from his school and our family we pursued testing and are SOOOO thankful we did. All a diagnosis does is provide a roadmap for how to help him be his best self. It doesn't change a thing about who he already is. :)

Anonymous said...

How is he doing at school? TO me the big advantage in a diagnosis at school is that he doesn't get "behavior issues" but school has the ability to make accommodations for things he cannot help.

Anonymous said...

We went through years of "could be... Or it might be something else" Rather than waste time, considering the lack of social skills, we started with a social skills group. We figured with or without a diagnosis, learning the skills couldn't hurt. Thank God we didn't wait, because it took another 3 1/2 years to get the official word.

Anonymous said...

With the diagnosis comes services. If only for that reason, I strongly urge you to get the diagnosis. It also gives you a road map to your son.

Anonymous said...

Definitely do it, best thing we ever did for our little girl!

Anonymous said...

You shouldn't waste time getting a diagnosis. Honestly you will only be holding your son back, and hurting him more now and in the long run. It is the best interest for your sons future. So why wait any longer to get him help. And YES it will be with him for the rest of his life but that is something you will have to work thru and accept

Anonymous said...

as my children were born in the 1960s there was no diagnosis to be had,we just managed and yes things were very hard,daughter finaly diagnosed after ep of mental illness when she was in her 20s,rest of family,i e hubby and other child diagnosed later,i am glad my children never labeled,but looking back we so could have done with some help,especialy me,i now go to a/s partners group,this realy helps,but my family no way consider them self dissabled,but obviously some times if cant cope with main stream school,its essential,good luck,

Anonymous said...

Absolutely do not wait. My son is 12 years old and although we have been trying since he was two years old, we never knew what was really going on with him. Only last year was he diagnosed PDD-NOS; prior to that was Bipolar 1 with psychotic features and prior to that was depression. Since having the PDD diagnosis, and 10 months of him being hospitalized between two acute and two sub-acute hospitalizations; he is now finally getting the right services to help him in school and at home and in the community! He just completed a new psych evaluation and we are waiting the final results to come in to be sure if this diagnosis is correct or if he's actually an Aspie. Either way, he's finally getting what he needs! The earlier the testing can be done the better off your son will be. This doesn't go away but with the right help your child can grow up and learn how to deal with his differences and uniqueness and know that he is a good person! Good luck and God Bless!

Anonymous said...

Yes, definitely get a diagnosis in order for your child to get the proper help and for you to know how to help your child succeed and not be delayed! We just got a diagnosis at age 5 and have had services for about a year! The speech and occupational therapy has helped a great deal! If you delay, you only hurt your child.

Anonymous said...

Do it! It will help him in so many ways. I think parents know deep down. I knew my son had Asperger's before we saw the doctor. Once we got the diagnosis it opened so many doors. And I know it is hard to accept it 100% and that takes time but it really does help if you can get that diagnosis.
41 minutes ago · Like · 1

Anonymous said...

Do it. When my son hit public school and they even suggested he was different I was angry, defensive and dismissive. But it only made the situation worse. His initial diagnosis was ADHD, then a couple years later we were told he was on the high functioning end of the spectrum and eventually the aspie diagnosis came. With his diagnosis came the ability to get him an accurate IEP and I am not sure where we would be in the school system without it.

Anonymous said...

My son has it and Im so proud of him cause he is not different in a bad way but in a great way, he is extremly smart and my one of a kind son and I love him so much!!!

Anonymous said...

I can't believe you're saying that! Maybe your experience has been that way, and I pray that it hasn't, but for the vast majority of kids a diagnosis of Aspergers simply leads to being eligible for school based therapies for free! If this boy is already 7 and doing OK in school, it sounds like his parents are already on the ball at home in terms of supporting him.

Anonymous said...

Please have your son tested. You are doing him an injustice by not. you are his biggest advocate so you have to handle it. There is help out there for him but you have to seek it. Society especailly schools will only mistreat him without the diagnosis. Start with your ped then your local autism society.

Anonymous said...

This is the first time I've seen or read about kids are able to lose their hearing along with Asperger's. Does anybody know why that happens?

Anonymous said...

In my sons case, his hearing loss wasnt related to aspergers but water behind the ear. We thought school was labeling him incorrectly but he actually had both... Needed ear tubes and is aspergers.

Anonymous said...

We knew for years that something was going on with our son, but doctors blew us off. When he was nine, we finally got answers and were better able to understand his thought processes and how to communicate and discipline him more effectively. We are very open about his aspergers because it is a part of who he is. It took time, but he is beginning to embrace his differences as gifts and motivators and his self esteem has improved. Good luck!

Anonymous said...

I have watched so many of your you-tube videos and they are so awesome. My daughter and her husband are getting ready to start the gluten and casein free diet again. They did it 3 years ago hoping it would help them keep Kinser off of medicine and it did help but was so expensive. Kinser also has ADHD so he is on meds as I have told you before. We have also signed up for 2 classes at Riley hospital on autism. We just want all the info we can get right now to really understand Aspergers and what we can do to help Kinser with his life with Aspergers. Also...do you work with children who have childhood disintegrative disorder? I have a friend who's son may be diagnosed with that. I was telling her about your site but I didn't know if you dealt with that type of dx. Thank you so much for caring about our children. I have learned so much from your newsletters and videos. God has truly blessed you in being able to do this for families who need help and you have already been through it with your son.

Anonymous said...

I was relieved when our son was diagnosed as I was always told I was a bad parent, that I had an evil son who needed hard dicapline. The eariler intervention is put in place the better we have found as when our son was diagnosied at 5 we were seeing our younger son (2) heading down the same path as so we started intervining with him and he has beem much easier. We also started getting more help and understanding at school with a diagnosis.

Anonymous said...

I guess you didn't understand them saying they didn't want to go get him diagnosed for fear of labeling, All I was saying was to not wait any longer to go get help. But take it as you may.

Anonymous said...

whether you choose to get him diagnosed or not he will still have this the rest of his life and he will know that he is different. With a diagnosis at least you can tell him why he is different and get the right supports and help for him for his future. Without a formal diagnoses you do not get the supports and help he may need for his future. I don't see it as a label, I see it as a gift, he is still who he is and being diagnosed with Aspergers will not take away his personality or define him in anyway.

Anonymous said...

Evaluation to rule out or prove the diagnosis is absolutely essential! It was such a relief for us. My daughter felt better having a reason why she was this way. We finally knew what direction to take to help her. Family, friends, teachers, etc finally had to acknowledge what we had been saying for a long time. My daughter doesn't feel labeled, she feels more understood!

Anonymous said...

I think 'labelling' is 'enabling' - it helps us to know what to research, where to look and to gain other peoples understanding and support. My son was diagnosed three and a half years ago and knowing he has Asperger's and ADHD through formal diagnosis has gained him entry into a more supportive school. Good luck with your decisions

Anonymous said...

I'm learning that Asperger kids have a tendancy to "adapt" and function on a more mainstream level the sooner they are diagnosed. My kiddo seems to be doing BETTER since our diagnosis. I worked hard for an early diagnosis as soon as I realized something was up....because I was so concerned that his symptomatic behavior would have him labled as a "bad kid". Trust me, a mama knows when the teachers can't stand her child. I did not want him to develop a hatred for school and learning. Today, he was upset because he might "miss something" when I picked him up for an appointment. I'm so encouraged!!!! Our past experience has been "school kicking and screaming".

Anonymous said...

I could have written that a year ago. The best thing we ever did was get our son diagnosed. Now looking back, I can't figure out why I was so scared and I wish more than anything we had done it sooner!

Anonymous said...

AFTER the diagnosis, My son's life is better! I felt the same did not want to label him~now at 14 years old my son has this diagnosis! Thank God. I should of done it years ago! I would of saved him so much , the bullies, the teacher's struggles...Dan's struggles! Don't be affraid of the testing and diagnosis. It is a blessing to have! Good Luck and GOd Bless you!

Anonymous said...

My son was diagnosed at 11 this summer, and I am already seeing a big change. At first he didnt want to know anything about it, but after reading the WEB-MD information I printed for him, and getting advice from other parents he is finally talking to the kids at the bus stop and in band. Last year it was unheard of. The older they get the more the symptoms kick in. Now we understand what is going on, are in family cognative therapy, putting together a 504 plan at school for him, and taking each day as it comes. I wish the lightening would have struck years ago when he more go with the flow.

Anonymous said...

but how is the "diagnosis" helping? my son is 14 and was diagose last year but we are still have the same problems. The teachers this year seem to be better with him than in the past but that is the only improvement. I have bought books for him but he wont read them.

Anonymous said...

Also when the teenage years hit...wow. IEP just worked wonders for Daniel.

Jayne said...

Im a very worried parent whos son is now 11 just started high school. He hated juniors but always wanted to go to school to see his friends. He always sticks up for his friends when playing football & rugby. He doesn't have a particular favorite friend but lots. Teachers said he was rough on the playground, showed little empathy, always moved to sit where he wanted, he never joined in when doing class singing & always involved in the disruptions in class but not always the instigator. He said teachers always talked about him, school was boring
& he often came home angry. He definitely has very challenging behaviour - we are now seeing common traits in his ways. Always wants to be early for things, he's a better person when he knows what he's doing , looses his temper so easily over daft things, his brother annoys him, he requires lots if attention, can't keep him in - he always wants to be out, staying in is boring. Do you think he has is on the autisic spectrum ??

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

Social rejection has devastating effects in many areas of functioning. Because the Aspergers 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 Aspergers Children

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 child is totally out-of-control. When it ends, both you and the Asperger’s 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 Aspergers Teens

Although Aspergers is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager with Aspergers are more difficult than they would be with an average teen. Complicated by defiant behavior, the Aspergers 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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Aspergers Children “Block-Out” Their Emotions

Parenting children with Aspergers and HFA can be a daunting task. In layman’s terms, Aspergers is a developmental disability that affects the way children develop and understand the world around them, and is directly linked to their senses and sensory processing. This means they often use certain behaviors to block out their emotions or response to pain.

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Older Teens and Young Adult Children With Aspergers 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 Aspergers 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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Living with an Aspergers Spouse/Partner

Research reveals that the divorce rate for people with Aspergers is around 80%. Why so high!? The answer may be found in how the symptoms of Aspergers affect intimate relationships. People with Aspergers often find it difficult to understand others and express themselves. They may seem to lose interest in people over time, appear aloof, and are often mistaken as self-centered, vain individuals.

Click here to read the full article…

Online Parent Coaching for Parents of Asperger's Children

If you’re the parent of a child with Aspergers or High-Functioning Autism, you know it can be a struggle from time to time. Your child may be experiencing: obsessive routines; problems coping in social situations; intense tantrums and meltdowns; over-sensitivity to sounds, tastes, smells and sights; preoccupation with one subject of interest; and being overwhelmed by even the smallest of changes.

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Unraveling The Mystery Behind Asperger's and High-Functioning Autism

Parents, teachers, and the general public have a lot of misconceptions of Asperger's and High-Functioning Autism. Many myths abound, and the lack of knowledge is both disturbing and harmful to kids and teens who struggle with the disorder.

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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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