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Why Some Parents Don't Pursue a Formal ASD Diagnosis for Their Child

 "We suspect our 4 year old (Ryan) may have a form of autism, but my husband is reluctant to get a diagnosis for him for fear that it will cause more problems than it solves. What say you? I'm torn on this issue! I want to do what's best."

Because the symptoms of High-Functioning Autism (HFA) can be subtle, moms and dads may not recognize any differences in their youngster until he is age three or older. Pursuing a formal diagnosis is a family's individual decision to make.

There is no “correct” time to form this decision, although many parents agree that they wish to know their youngster's diagnosis definitively and as early in their youngster's development as possible.
 

If you are discovering that the criteria for HFA might have application for your youngster, then you are faced with a decision about seeking a diagnosis. You may NOT wish to pursue a formal diagnosis at this time for one or more of the following reasons:
  • You are scared or in denial of the situation
  • You are worried that your youngster will be stigmatized or singled out
  • You don't believe in labeling people's diversity
  • You don't feel that your youngster's differences are causing detriments in his life significant enough to obtain a diagnosis
  • You'd rather wait to see if anything changes as your youngster continues developing

The benefits of obtaining a diagnosis may be:
  • Accessing a system of services and supports designed to give your youngster a head start in life as early as possible
  • Being able to educate family, friends, and neighbors about your youngster's unique way of being when appropriate
  • Being able to educate your youngster in order to promote self-awareness and self-advocacy, as needed
  • Being able to put a name and a framework to a collection of symptoms and traits instead of perceiving it all as your youngster's “bad behavior” or somehow your fault
  • Understanding and appreciating sooner your youngster's lifelong unique qualities, personal needs, and talents

Grown-ups with the disorder who were never diagnosed as kids often ask, “Would it have been helpful to have had the diagnosis at an early age?” We are still a long way from effectively understanding autism spectrum disorders in a global sense, but having this knowledge early on in the lives of many adults could have aided them to:
  • Avoid struggles with mental health issues, or be better prepared to care for one's mental health
  • Be better able to initiate and sustain relationships
  • Be better equipped to locate viable employment opportunities that best match skills and talents
  • Be better prepared for higher education, or trade school
  • Be better prepared to avoid situations in which one may be unwittingly exploited
  • Experience greater success in school

A group of children with an autism spectrum disorder was asked a question: “Is it helpful to know you have it?” They were unanimous in explaining that it was helpful and cleared up a lot of misinterpretations people had about why they do what they do.

If you determine that HFA best describes your youngster's way of being and are interested in pursuing a diagnosis, your first course of action is to seek a referral to the appropriate clinician most qualified to make the diagnosis.

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

==> Videos for Parents of Children and Teens with ASD
 
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Dealing with Negative Emotions When You Discover Your Child Has an Autism Spectrum Disorder

When parents first discover that their child has an Autism Spectrum Disorder (ASD), they may experience an emotional struggle that looks something like this:
  • Denial: "Surely the doctors have misdiagnosed my child. He may be a little odd, but I have a hard time believing he has some kind of disorder."
  • Anger: "Why is this happening to me? What did I do to deserve this."
  • Bargaining: "Maybe there's a cure!"
  • Depression/Guilt: "I must have done something to make this happen."
  • Anxiety: "I don't even know where to start in dealing with this."
  • Acceptance: "This could be much worse than it is. I think I'll be able to handle it."

It's natural for moms and dads to get angry with themselves, each other, teachers, doctors, and even the child himself. Parents are trying to make sense of what has happened.

Moms and dads need to allow themselves to experience whatever emotions they are having. It's all part of adjusting to the challenges ahead. Trying to deny or minimize how hard it is to have a child with an Autism Spectrum Disorder only prolongs the fear, frustration and anxiety.
 

No matter how much you do for - and with - your ASD or high-functioning autistic youngster, you're probably going to feel some guilt. In part because no one knows what causes or cures this disorder -- so anything you did could be at fault (according to some theorists), and anything you do could help. But guilt can be crippling and can even get between you and your ability to be your best parent. The following tips may help you to take a deep breath and set guilt aside, at least for a moment:

1. Guilt-induced thought: "I can't leave any stones un-turned!"

What if that new therapy you just read about was THE therapy -- the one that would have cured your youngster if only you'd tried it? No one wants to think they denied their youngster a cure for a lifelong disability. But remember that one-on-one time with a loving adult is always a plus -- and it's unlikely that that new high-tech "cure" is the next penicillin!

2. Guilt-induced thought: "I should be learning more about the disorder!"

There's always more to learn. And if you live in a metropolitan area, there are always seminars, support groups and events to attend. But there's more to life than autism -- and it might make sense, just for once, to hire a sitter and go to the movies with your "significant other!"

3. Guilt-induced thought: "I should be making time for my other children and my spouse!"

If you're the primary caregiver for a youngster with high-functioning autism, you may be too overwhelmed to give other family members the time and attention they crave. While it really is important to make time for others in your life, it's also ok to ask for a few minutes to regroup...take a walk...or otherwise clear your mind. Your children and spouse deserve your focused attention -- something that's tough to give when you're still in "therapy mode!"

4. Guilt-induced thought: "I should be pushing for more _____ (fill in the blank) for my youngster!"

Depending upon what you read or who you listen to, you'll hear conflicting advice about what your youngster needs. More inclusion or less inclusion; more or different therapies; more or different activities, play dates, and so on forever. But even a typically developing youngster can get overwhelmed -- and youngster on the autism spectrum needs fewer transitions, less intensity and more structure than most. Maybe you do, too...!

5. Guilt-induced thought: "I should be spending this money on therapy!"

You broke down and bought that new jacket -- and now you wonder why you didn't spend the money on therapy... books on autism spectrum disorder ...learning toys ...or something else for your "special needs" youngster. But he or she is only one member of your family. You worked hard for your money, and your youngster will never miss that one extra session of therapy!

6. Guilt-induced thought: "I should be spending this time on therapy!"

You picked up a book while your youngster was watching TV -- and now you feel guilty. After all, every second counts, and you should be engaging him all day long. It's a nice idea, but even supermom can't be on call for her youngster 18 hours a day and still stay sane and healthy. Remember that your health and welfare count too!

7. Guilt-induced thought: "I should be working faster!"

Publicity about the importance of early intervention has caused a panic among moms and dads. The suggestion is that there's a window of opportunity early in life -- and that that window closes sometime around age three. The truth is, though, that children (and even adults) continue to develop and grow. While early intervention is important, it's not the only key to your youngster's ongoing success!
 

8. Guilt-induced thought: "I should give up more for my youngster!"

It's true that some families give up everything for their autistic youngster. They mortgage their homes, give up their careers, and end any "extras" to pay for therapies. This is, of course, a valid choice. But not every autistic youngster needs such a high level of commitment to thrive and grow. Your decision needs to take into account not only your youngster -- but you, your spouse, and the life you've chosen together.

9. Guilt-induced thought: "I somehow caused this problem!"

We know autism can't be caused by a lack of love. But was it that tuna you ate when you were pregnant? The vaccines you allowed your pediatrician to give your youngster? Since we don't know what causes the disorder, it can be easy to decide it was your fault. Chances are, though, that genetics -- something you can't control -- plays a significant role!

10. Guilt-induced thought: "Other people do more for their "special needs" youngster!"

And other people are thinner, fitter, richer and have bigger homes too! Comparing yourself to other families can be helpful if those others offer support and ideas -- but it can be destructive if it leads to a constant sense of guilt.

11. Guilt-induced thought: "I'm probably making a bad problem worse since I don't know about autism spectrum disorders."

You are not in this situation because you are a bad parent or lack the skill in raising a son or daughter. You may lack some of the skills necessary for raising a youngster on the spectrum, but this is not surprising given the level of complications that kids with the disorder may bring.

12. Guilt-induced thought: "I don't know if my child will be able to make it out there in the real world as an adult." Your child has a purpose in this life. And since the autism-package comes with strengths -- not just challenges -- you can expect to see your child do great things someday.

How to Improve the Self-Image of a Child on the Autism Spectrum

 "Any tips on how to help my newly diagnosed daughter (high functioning autistic) to improve her self esteem. She thinks she's 'stupid' ...she thinks she's 'ugly' ...she thinks nobody likes her... I don't know where she's coming up with these negative evaluations of herself, but it breaks my heart. We are all a bit anxious since we got the news about this disorder. But how can I help my daughter have a better perspective of her true self and her strengths?"

The diagnostic criteria for High-Functioning Autism (HFA) or Asperger's can be intimidating to moms and dads with kids who are newly diagnosed. The traits attributed to children on the spectrum can set a negative tone because of the focus on “disabilities” rather than abilities. Thus, parents should temper this information with a balanced perspective. The youngster has much to offer in the form of gifts and talents, and the attitude with which parents receive these “abilities” will directly influence his or her self-image.

Some mothers/fathers despair when they receive their youngster's diagnosis. Parents and the HFA child's siblings may perceive the diagnosis as hopeless or something that induces shame. Their rationale may be driven by several factors:
  • Conflicting pressures about proper child-rearing from family, neighbors, or friends
  • Conflicting pressures about proper intervention and support from doctors and other professionals
  • Insensitive presentation by a physician who focuses on disabilities
  • No access to literature or other educational materials that present a balanced perspective
  • No opportunities for contact with families in similar situations who are actually enjoying their HFA youngster
  • No previous exposure to people with differences who live well-adjusted, content lives
  • Projected anxieties about the youngster's future lack of independence and failure in adult life
  • Rumors and stereotypes about people with differences, including HFA

Some people have described HFA as “a neurological malady that dooms many of its victims to a lonely life and dead-end jobs despite higher-than-average intelligence.” When parents believe such upsetting, unrealistic stereotypes, anxiety around the diagnosis will naturally increase within the entire family. These and other negative stereotypes should never be projected on the child or communicated directly in front of her. Otherwise, a self-fulfilling prophecy can easily manifest itself (i.e., the child may come to believe that he/she is truly destined to be friend-less and job-less).
 

If an HFA child hears grown-ups refer to her only in negative terms, she believes it and, eventually, she becomes it. Being a sensitive child (as HFA children tend to be), she may naturally internalize, replay, and agonize over her “traits.”

Self-esteem is a powerful predictor of success. Not all HFA children have problems with social competence and self-esteem, but many do, and struggling daily with the challenges posed by having an Autism Spectrum Disorder can erode the enthusiasm and confidence that make learning fun. Knowing one's assets and liabilities, and feeling good about one's self can be an invaluable tool for negotiating the sometimes tumultuous path to achievement in school, success in the workplace, and acceptance at home and in the community at large.

Positive self-esteem is as important to success in school and on the job as the mastery of individual skills. And there's no question that doing something well helps a child feel better about himself, his accomplishments, and his potential to succeed in the future. Autism Spectrum Disorders, however, often pose formidable hurdles to positive self-esteem, and these in turn contribute to a hard-to-break cycle of self-doubt, frustration and failure.

Self-esteem can be described as how we think of ourselves and view ourselves in the context of our surroundings. Students in school have self-esteem shaped by how well they get along with peers and teachers. They are constantly making judgments about how "good" they are in comparison to their peers. Self-esteem is also shaped by how well children negotiate relationships with parents and siblings, and how successful they are in understanding and responding to many ever-changing interpersonal demands across many different settings. It is precisely in these areas that HFA children have the greatest difficulty, thus contributing to feelings of inadequacy and low self-esteem.

Threats to Self-Esteem in Kids on the Autism Spectrum—

While there is no menu of characteristics that captures the threats to self-esteem in HFA children, there are a number of traits frequently observed in the child that contribute to feelings of low self-worth. A few of the factors that seem to impact self-esteem in some HFA children in negative ways include the following:
  • assumes a posture of "learned helplessness" (i.e., they assume that because they struggled with something in the past, there is little they can do to change a negative outcome in the future, so they may stop trying and hope for the best)
  • believes that outcomes are controlled by external influences (e.g., luck, chance, fate) rather than as a result of their own internal efforts
  • has difficulty judging when it is his/her turn to participate in a conversation
  • has great difficulty knowing how he/she fits in to a peer group, which often results in 'hanging back' or being a passive (rather than active) participant in activities
  • has limited success "self-marketing" and getting noticed in positive ways within a peer group
  • has limited vocabulary or difficulty retrieving the right words for the situation
  • has trouble with topic selection and knowing when to stop a conversation
  • is a poor self-observer and has trouble sizing up and reflecting upon what is going right (and wrong) during social interactions 
  • is frequently (albeit not intentionally) the target of spoken and unspoken messages of disappointment and lowered expectation by parents and others
  • is less likely than peers to use gestures and demonstrations when sharing information 
  • is more likely to repeat rather than clarify when asked to expand upon an explanation
  • is repeatedly confronted with messages of low expectations for academic achievement by teachers and parents
  • is viewed as having diminished potential for success, even with services and support in school and at home 
  • is weak in verbal pragmatics (i.e., fitting the use of language to social situations, for example, not knowing when or how to laugh without offending the listener)
  • may have problems with visual spatial planning and self-regulation, resulting in difficulties judging how close to stand to someone during conversation, how to assume and maintain a relaxed posture, and when it might be appropriate to touch 
  • may misinterpret feelings and emotions of others and not realize when their behaviors are bothersome or annoying
  • not sure how to understand or explain personal strengths and weaknesses to others
  • perceives self as less popular and more frequently rejected or ignored by peers (sometimes resulting in further self-imposed isolation) 
  • seems to be overly egocentric and not interested in the responses of other speakers (when nothing could be further from the truth)
  • talks around a topic and provides less critical (and more extraneous) information in response to a question

 
How Parents Can Help—

How can a parent help to foster healthy self-esteem in a youngster on the autism spectrum? These tips can make a big difference:

1. Be a positive role model. If you're excessively harsh on yourself, pessimistic, or unrealistic about your abilities and limitations, your youngster may eventually mirror you. Nurture your own self-esteem, and your youngster will have a great role model.

2. Be spontaneous and affectionate. Your love will go a long way to boost your youngster's self-esteem. Give hugs and tell children you're proud of them. Pop a note in your youngster's lunchbox that reads, "I think you're terrific!" Give praise frequently and honestly, without overdoing it. Children can tell whether something comes from the heart.

3. Build your youngster's sense of connectiveness. Physical touch and loving words from moms and dads are the first step.

4. Build your youngster's sense of uniqueness. Kids need to feel that others think they have special qualities and talents. Find opportunities to point these out to him.

5. Create a safe, loving home environment. Children who don't feel safe at home will suffer immensely from low self-esteem. A youngster who is exposed to moms and dads who fight and argue repeatedly may become depressed and withdrawn.

6. Deal with failure. If the youngster fails, he should not feel a failure. Teach your youngster that failure is only a temporary setback on the road to success.

7. Encourage your youngster's curiosity, creativity, and imagination. Teach him to satisfy curiosity with learning and convey the joy of learning in everything you do.

8. Give him responsibilities in the family and allow his input into decisions that affect him.

9. Give positive, accurate feedback. Comments like "You always work yourself up into such a frenzy!" will make children feel like they have no control over their outbursts. A better statement is, "You were really mad at your brother. But I appreciate that you didn't yell at him or hit him." This acknowledges a youngster's feelings, rewards the choice made, and encourages the youngster to make the right choice again next time.

10. Help children become involved in constructive experiences. Activities that encourage cooperation rather than competition are especially helpful in fostering self-esteem. For example, mentoring programs in which an older youngster helps a younger one learn to read can do wonders for both children.

11. Identify and redirect your youngster's inaccurate beliefs. It's important for moms and dads to identify children' irrational beliefs about themselves, whether they're about perfection, attractiveness, ability, or anything else. Helping children set more accurate standards and be more realistic in evaluating themselves will help them have a healthy self-concept. Inaccurate perceptions of self can take root and become reality to children. 
 

12. Let your youngster express himself in his own way. Show respect for his thoughts and feelings so he will learn to do the same.

13. Provide a broad range of experiences for your youngster so he will have more confidence in facing new experiences. At the same time maintain structure and order in your day-to-day life.

14. Provide many opportunities for him to practice new skills he learns. Teach him to cope with failure by analyzing it, setting reasonable standards, and not overreacting.

15. Provide opportunities for him to feel that he is a functional and important member of his family, school class, group of friends, sports team, church, neighborhood, and community.

16. Teach him good problem-solving and decision-making skills. Teach him to prioritize, think about consequences, and plan a course of action.

17. Teach your youngster good social and conversational skills by modeling, direct teaching, and guided practice. These skills will enable him to have positive interactions with others.

18. Teach your youngster to set minor and major goals. Be specific in your expectations and the standards and consequences for his behavior.

19. Tell him your family stories and talk about his ancestors, heritage, and nationality in a positive way.

20. Watch what you say. Children are very sensitive to moms and dads' words. Remember to praise your youngster not only for a job well done, but also for effort. But be truthful. For example, if your youngster doesn't make the soccer team, avoid saying something like, "Well, next time you'll work harder and make it." Instead, try "Well, you didn't make the team, but I'm really proud of the effort you put into it." Reward effort and completion instead of outcome.

Your child will rely on you to provide a solid foundation of self-worth. Equipped with healthy self-esteem, she will be better prepared to enter into a life that will likely present many challenges.

Think of the areas in which your youngster is naturally gifted:
  • Does she have the quiet reverence to render amazing watercolors?
  • Does she enjoy describing the exact alignment of the solar system's planets, identifying each by correct name, placement, and color?
  • Does she assume the personality traits of a favorite cartoon character with uncanny accuracy, down to mimicking lines of dialogue?
  • Does her comprehension of computer programs exceed that of many adults?

At every opportunity, reinforce to your child how special she is to you. Tell her that you are delighted when she shares her astronomy charts with you. Highlight your youngster's talents when talking with family and friends. Prominently display her works of art. You will be surprised at the long-lasting impact these moments will have as you mold your child into young adulthood.

The autistic youngster instinctively wants to be good, to fit in, and to be just like other children. She will be best poised to do that if she feels safe and comfortable in knowing there is a place where she is unconditionally loved and understood.

What is the Best Therapy for Kids with ASD Level 1?

“What would be the best therapeutic approach for a 6-year-old boy with Autism (level 1)?”

The ideal treatment for ASD level 1, or High-Functioning Autism (HFA) coordinates therapies that address core symptoms of the disorder (e.g., poor social skills, obsessive or repetitive routines, etc.). While most therapists agree that the earlier the intervention, the better, there is no single best treatment package.

Treatment takes into account the linguistic capabilities, verbal strengths, and social vulnerabilities of kids on the autism spectrum. A typical program generally includes: 

  • training of social skills for more effective interpersonal interactions 
  • training and support of mothers and fathers, particularly in behavioral techniques to use in the home 
  • social communication intervention, which is specialized speech therapy to help with the pragmatics of the give-and-take of normal conversation 
  • occupational or physical therapy to assist with poor sensory integration and motor coordination 
  • medication for coexisting conditions (e.g., depression, anxiety) 
  • cognitive behavioral therapy to improve stress management relating to anxiety or explosive emotions, and to cut back on obsessive interests and repetitive routines 
  • combinations of talk therapy, play therapy, and neurofeedback
 
 
Of the many studies on behavior-based early intervention programs, most are case studies of up to five participants, and typically examine a few problem behaviors (e.g., self-injury, aggression, noncompliance, spontaneous language). Unintended side effects are largely ignored.

In my opinion, the effectiveness of social skills training has been firmly established. A randomized controlled study of a model for training moms and dads in “problem behaviors” in their autistic kids showed that parents attending a one-day workshop or six individual lessons reported fewer - and less intense - behavioral problems in their kids.

Vocational training is important to teach job interview etiquette and workplace behavior to older teens with HFA. Organization software and personal data assistants to improve the work and life-management of these teens are useful.
 



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

==> Videos for Parents of Children and Teens with ASD
 
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Kids on the Autism Spectrum: Restricted & Repetitive Interests

“We are new to the world of autism spectrum disorders. Is it common for a child with high functioning autism to spend all (or certainly most) of his time doing only one thing? Our 5-year-old son would spend 24-hours-a-day telling you about dinosaurs if he didn’t have to sleep. Should we just go along with the program, or attempt to curb this appetite for dinosaur trivia?”

I would recommend against curbing the appetite – unless it gets in the way of fulfilling his responsibilities (e.g., homework, chores, etc.). Parents and teachers can use a child’s special interest to their advantage in multiple ways.

Kids with High-Functioning Autism (ASD level 1) often display behavior, interests, and activities that are restricted and repetitive and are sometimes abnormally intense or focused. They may stick to inflexible routines, move in stereotyped and repetitive ways, or preoccupy themselves with parts of objects.

Pursuit of specific and narrow areas of interest is one of the most striking features of High-Functioning Autism. These children may collect volumes of detailed information on a relatively narrow topic (e.g., dinosaurs, trains, deep fat fryers etc.) without necessarily having genuine understanding of the broader topic (e.g., the youngster might memorize camera model numbers while caring little about photography). This behavior is usually apparent by grade school, typically age 5 or 6.
 
==> How to Prevent Meltdowns and Tantrums in Children with Autism Spectrum Disorder

Children with High-Functioning Autism latch onto topics and interests that are often considered a hobby by others. However, they develop an intense interest in the subject and may become experts in it. Some obsessions involve physical collections while others are fact-based.

Some of the common interests that characterize children with High-Functioning Autism include:
  • accumulation of objects or facts and information
  • intense attachment to objects in a collection
  • agitation if the collection is disturbed or moved out of order
  • animals and nature (this often starts with a fascination for dinosaurs and may end up with expert knowledge about animal or insect groups like spiders or snakes)
  • books
  • for boys, card collections like baseball or superheroes
  • for girls, Barbie dolls
  • interest in death and freaks
  • obsession that is accompanied by extreme motivation, attention and ability
  • obsession that is concentrated on to the exclusion of other activities
  • obsessions that dominate the child’s conversation
  • obsessions that dominate the child’s free time
  • public transport systems (e.g., the child may know every station in a subway system or travel around to visit old rail collections)
  • science fiction and fantasy
  • technical and scientific interests (e.g., vehicles, trains, aircraft, ships, volcanoes, astronomy, mathematics, numbers, chemistry, the periodic table, the weather)

Obsessions play an important role in the daily life of children with High-Functioning Autism. For example:
  • The interest may give them a sense of identity if they are considered to be an expert in the area.
  • The interest is associated with pleasure (e.g., a family trip on a steam train or a visit to a game park).
  • The interest is a form of relaxation. High-Functioning Autism kids thrive on routine, and familiarity and being able to lose themselves in an interest is a stress reliever.
  • Obsessions help them overcome anxiety when the interest is directed at something they fear. By understanding it, they strip it of its ability to “harm.”
  • High-Functioning Autism kids struggle with the unpredictability of life and social interaction, and feel secure within the confines of their special interest.

While special interests can be beneficial to kids on the spectrum, they can also cause difficulties and become a source of annoyance to those in their social circle. Although these special interests may change from time to time, they typically become more unusual and narrowly focused, and often dominate social interaction so much that the entire family may become immersed.

Stereotyped and repetitive motor behaviors are also a core part of the diagnosis of High-Functioning Autism and other ASDs (e.g., hand movements, flapping, twisting, complex whole-body movements, etc.). These are typically repeated in longer bursts and look more voluntary or ritualistic than tics, which are usually faster, less rhythmical and less often symmetrical.


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

==> Videos for Parents of Children and Teens with ASD
 
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PARENTS' COMMENTS:

•    Anonymous said...  also sharing his interest will help him 2grow. Social skills r a challenge & u can use his interests 2help him communicate better. Conversations w\other ppl r challenges 4them. Use this & anything u can 2help him.
•    Anonymous said...  Becci Snead Ellison, thank you!!! That is a great idea!! She usually interrupts dinner time conversations and this is a great way to teach her!!! I so appreciate your input!
•    Anonymous said...  enjoy him & love him 4who he is! His own unique lil person! He will amaze u!
•    Anonymous said...  enjoy the interest w\him, build a bond w\him now so u can continue 2know him & learn about him. They will bcome strangers if u dont take time 2know them.
•    Anonymous said...  Eventually you can expand to. Where they lived, what they ate, what period etc. art projects can revolve around making dioramas, making plaster casts of 'footprints'. You can add writing by creating a biography page for each species with all the info. Take dinos and run with it.
•    Anonymous said...  Games. It still gives him a connection to his peers but I miss our trips to museums and zoos where he blew everyone away with his knowledge.
•    Anonymous said...  Give him certain times during the day where he can ONLY talk about dinosaurs (set a timer) When the timer goes off he can only talk about everything else BUT dinosaurs...My youngest was the same way about maps. During his "dino" time help him research, help him read, help him do everything dino related. This way it is limited (to save your sanity) but he still gets the satisfaction of feeding his knowledge
•    Anonymous said...  Go along with it. It interests him, and you should encourage it. I found before I was diagnosed, people discouraged any interests, which made me not want to get into anything. It'll set him back if discouraged
•    Anonymous said...  Hi. This is the first time I've posted, but I've been an avid post reader for some time now, sorry, but I totally understand what your all saying. Most of my friends and family don't see it in them at all, but my husband and 2 sons, aged 14 and 11 have high functioning Autism. They each have an amazing gift or talent in something different, and all 3 have high analytical intelligence but lack in emotional/ communication skills.. As for obsessions, My oldest son started with Thomas the Tank Engine. He could name every single engine, carriage, person etc and would quite arrogantly tell you if you got it wrong. Then it was dinosaurs.... He could tell anyone at all (and he would) the name (some of which I can barely pronounce) of just about any dinosaur, where it originated and what it ate....then it was Brazilian Jujitsu.... Then he moved onto, and is still current, the love for Reptiles, not all.. Primarily snakes and some lizards.... BUT He has recently discovered how good he is at Archery... So as long as he continues to take proper responsibility of the 3 snakes and 2 lizards...we will nurture his archery skill... He has his eye on a $400 bow set at the moment. The thing is, is that he's that self disciplined that he will do chores and save his b'day and Xmas gift money up, so he can get it. If only I had the same self control... Lol. My 11 yr old son is an avid book reader. He can read a whole adult sized novel in about 4 hours, and then tell you about in with the most impeccable memory and description. It's almost like a movie was in his head and he can describe it you. He loves animals, particularly dogs and cats, but has no fear... I just hope that a nasty or troubled animal doesn't hurt that naivety one day, although I've tried to tell him, he has like a cat/dog whisperer thing in him. I'm planning on getting him a vet science book... He'll be a vet by the time he's 17 I reckon.... But he is my fragile one to me. He is very naive...but he's also still very young. My ASD boys are amazing, and perfect role model students at school... And I truly believe that they are the next step in evolution.... As for my husband... That's a whole different story... We've had loads of problems since the realisation of it all only 2 years ago after 14 years marriage, But he still is the only man for me and I love him so much. We' re a 'Work in Progress'.... Xxx
•    Anonymous said...  I've always let my son go with what he feels. Yes, there have been times I had enough and had to say we would have to talk about it later. The interests do change over time and as they age. My son is now 15 and isn't as into 1 thing anymore. They feel very isolated as it is. Having an interest and being excited about it is healthy in my opinion. My son has always been so passionate about certain things throughout the years. It gave him confidence and he was proud of his knowledge.
•    Anonymous said...  I've had to limit my daughter's time with her obsession. She loves Super Mario Bros for the Wii. She'll play it, has stuffed characters, watches the old TV show on Netflix from the 80's and will watch Youtube videos of other people playing and tips. I do make her alternate it with her other interests and she's only allowed to play the game in 30 min intervals and never first thing in the morning or right before bed. If I don't she gets hyper and can't focus. She'll also dream about it. She literally talks about Mario in her sleep.
•    Anonymous said...  Just listen Mom , I promise you some day he'll thank you for it!
•    Anonymous said...  Let him be excited to share. And let him know you are proud of his vast knowledge of dinosaurs. Who knows, he could grow up and be the world's greatest archeologist!!!!!
•    Anonymous said...  Let him do dinosaurs now. He'll be just as obsessed about the next thing when it comes along.
•    Anonymous said...  McKenzie, use her love if those subjects to teach her a social skill! You can practice at dinner by giving her an appropriate amount I time to talk about her subject but then giving brother a chance to talk about his day it subject and have your daughter respond with questions or gestures that would be appropriate in any conversation! This is an exercise we learned from ABA and we have fun with it all the time!
•    Anonymous said...  Mine went from dinosaurs to animals. At school it gave him something to talk about. Most kids love animals. Now at 14 it's video gan
•    Anonymous said...  My 13 yr old talks about bustin bieber n one direction all the time. She use to talk about school o much I told her no talking about school after 5pm. It took awhile but it works . Now it's music.
•    Anonymous said...  My 14 year old's obsession is anything from the 1980's. Honestly, I get so tired of listening to his facts because it is an all day thing. I have to tell him that I've had enough for the day and he needs to draw or play his video games...which are also from the 80's. As he has grown his obsessions have been: dinosaurs, Sesame Street, Flags of the world, Mascots for football, LEGOS, Star Wars and now the 80's:)
•    Anonymous said...  My ltl man moves to a new topic when hes ready. Thomas the tank was approx 4 years!
•    Anonymous said...  Oh absolutely! I know way more about WWII than most because of my son! This is perfectly typical I our a-typical kiddoes! .
•    Anonymous said...  Our daughter is 12 and she will spend all her energy and time researching and discussing the Titanic, Helen Keller and now it's Ann Frank. It can get overwhelming for us and her brother to listen to this all the time. But when we ask her to talk about something else she feels hurt and says we just don't want to listen to her . Just not sure what to do sometimes.
•    Anonymous said...  Perfectly normal. My 12 year old son is still like that. Eventually your son will switch to another subject, and the dinos will disappear in a second flat. Ride the wave. I figure if it makes him happy then I will feed the knowledge to him until he is ready to move on. Because he always does.
•    Anonymous said...  setting limits r good, 10 mins of dinosaurs, then 5 mins on something else...(4example) give & take of relationships r important 2teach him. Limits but not denial or smothering. Teach him thru his interests! U will learn more about him!!
•    Anonymous said...  That is very common! We have a Dino lover expert! Autism Speaks is a wonderful that has helped us. Our son is 6. You will really enjoy all the quirks that they have.
•    Anonymous said...  This is perfectly normal with a child with Asperger's. Be supportive and indulge his curiosity and enthusiasm. Can you use this special interest as a bridge to explore other subjects? Before you know it, his interest in dinosaurs will wane, and he will move on to a new special interest. Also perfectly normal. As for social skills, you may want to coach him that other people may not enjoy talking about dinosaurs as much as he does, but it's OK to like dinosaurs and want to learn all about them. It would be great if he could find a friend who likes dinosaurs as much as he does, so he will feel accepted and have someone who shares his special interest very much.
•    Anonymous said...  We leave our lil un he will change to sumfin else wen hes ready
•    Anonymous said...  We moms of aspies need 2stick 2gether! Even when u hear dinosaurs n ur sleep...remember...this is her world shes sharing w/u! U can teach her more about the world she has 2live n also! hang in there! Its tough but soo worth it! 
*   Anonymous said... Here is an idea that helped us TREMENDOUSLY when our son was severely stuck on topics and could not have a two way conversation.  A STOP WATCH!  Give the child a stop watch and let him push the timer.  He can watch the time tick by or not, but the stop watch does help keep his interest.  He has one minute to tell you whatever he wants to talk about.  At the end of one minute, the stop watch goes to the parent.  The parent then starts the timer and responds back to the child about what he was discussing.  (Child cannot talk during this time.  He has to listen.)  The parent can then change the subject.  At the end of one minute, the child gets the stop watch back. He restarts the timer and he has to comment on what the parent just talked about BEFORE he can talk about what he is stuck on.  If the one with the timer has nothing more to say and the minute isn't up yet, no one can talk until the time is up.  This really helps the child with self-control and stops rattling.  This method saved us after my husband passed and there was no one around to listen except my ears.  My son quickly learned two way conversations.  My family and friends could not get over the fast improvement.  Whenever he wanted to talk about what he was stuck on, or something in his day, he would come to me and say, "I have something really important to tell you," as he handed me the stop watch.  If ti wasn't the best time, I would ask him to wait 15 minutes (or however long it would be before I was available) then he could talk as long as he wanted with the stop watch.  It stopped the all day verbal chattering about nothing.
•    Anonymous said...  Try to help them find lots of mini obsessions It can help breakup the challenge of the same topic all the time. So important to work with the obsessions and not fight them. They can become your communication lifelines in difficult times.
•    Anonymous said... Absolutely. My son is 7, and he goes on and on about his "topic du jour.". This is where speech and language pragmatics therapy comes in. Learning the back and forth of conversations, etc.
•    Anonymous said... and on the bright side......you will learn a lot about dinosaurs.....
•    Anonymous said... Great insight!!! Makes me understand my nephew now even better.
•    Anonymous said... I think it is important to also introduce other things so that they develop in other areas. Some form of physical activity, some other toys, and things that may be related but help introduce something else...for example, fiction books about dinosaurs that lead to fiction books on other topics. Or non-fiction books about reptiles.
•    Anonymous said... If my son could play Roblox 24-7 he would! That's all he wants to do.
•    Anonymous said... My grand daughter has a huge obsession with Match Box Cars. We have three Aspies in our family.
•    Anonymous said... my son is aspie and ADHS so it is hard for him to keep on jus one thing he bounces from one to another but always stays with a focus on cars
•    Anonymous said... My sons is almost 10 and huge into Pokemon. All I hear most days is about Pokemon. I had to set time limits on how often he can play it but he still talks about it all the time. This is his life log obsession because he's been playing it since he was 2.
•    Anonymous said... Rainbow looms have to be just right and makes them all. 😊
•    Anonymous said... sounds like a textook Aspie....
•    Anonymous said... Use his love of dinosaurs to keep him engaged in conversation with you and others. My grandsons will maintain eye contact for longer lengths of time if they are talking about their favorite things.
•    Anonymous said... Very common with aspies. Both of mine have favorite things they would play with or talk about.
•    Anonymous said... Yes . Just remembering Thomas the train makes me smile
•    Anonymous said... yes, that is common. or months or years of one or two preferred activities. Even if he shows massive resistance, its important to make him do other things and set limits on the obsessions.
•    Anonymous said... You can also use his obsessions to teach other skills, adding and subtracting dinosaurs, dinosaurs in a conversation, etc. 
•    Anonymous said... My 16 year old aspie spends hours (not all at once) a day jumping on the trampoline. I think it kinda grounds/comforts him.
•    Anonymous said... My son did the dinosaur thing... totally normal...I believe we should not discourage them however difficult the repetition becomes... its very difficult to steer them to other interests..
•    Anonymous said... My son had a fight today at school telling me his tired of children bulling him. In one way I'm so happy he stood up for. The other hand how can I tolerate violence
•    Anonymous said... My son had a thing for cars when he was younger...don't curb it - it's what they love! it's their focus and it's often what will keep them calm and interactive. Instead, teach through it. We learned colours , maths, imaginative stories ...the list is endless!!
•    Anonymous said... My son has hyper focus on one subject at a time that can lasts for months...then he moves onto something else! This transition has Improved as he's got older, he changes his focus in quicker turn around times, and at times is interested in more then one thing! He is now 12. He can be super happy about his focus when it's going well...for example he is really into yo yo's right now (hand eye co ordination off the charts) and is learning all the tricks he can!! But his string broke on the yo yo and had a total meltdown! Always have spares!!!!
•    Anonymous said... My son is 8 years old. We tend not to curb his appetite for his repetitive play. It is something that keeps him happy. What we have done is try to introduce new games.
•    Anonymous said... No let him go....this is one thing about autistic kids is a specialty. My son is 8 and right now it's minecraft. He is also very interested in dinasours, springboard diving (his sport) space. My biggest piece of advice is don't treat him Any different. We exspect the same behavior from him as our older son (they are 17 mths appart). The only difference is we have more patience and understanding when it comes to our 8 year old. But if he doesn't follow the rules he does get grounded. Usually it's his tablet we take away. We started this when he was young and we are finding it easier now that he is 8. Still have our bad days but they are less. They MUST know where those boundaries are. There is no gray area with my son only black and white, right and wrong.
•    Anonymous said... Oh and he is also a Minecraft fanatic, I know quite a few asperger kids who love Minecraft.
•    Anonymous said... We loved the yo yo phase!
•    Anonymous said... Yes would be the short answer


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Kids on the Autism Spectrum and Auditory Processing Disorder

Do loud noises annoy and disturb your high-functioning autistic child? If so, she or he may have APD.

Auditory Processing Disorder (APD) is an umbrella term for a variety of disorders that affect the way the brain processes auditory information. It is not a sensory or inner ear hearing impairment.

Kids with APD usually have normal peripheral hearing ability. However, they cannot process the information they hear in the same way as others do, which leads to difficulties in recognizing and interpreting sounds, especially the sounds composing speech.

APD can affect both kids and grown-ups. Approximately 2-3% of kids and 17-20% of grown-ups have this disorder. Males are two times more likely to be affected by the disorder than females.

APD can be genetic or acquired. It may result from ear infections, head injuries or developmental delays that cause central nervous system difficulties that affect processing of auditory information. This can include problems with:
  • auditory discrimination
  • auditory pattern recognition
  • auditory performance in competing acoustic signals (including dichotic listening)
  • auditory performance with degraded acoustic signals
  • sound localization and lateralization
  • temporal aspects of audition, including temporal integration, temporal discrimination (e.g., temporal gap detection), temporal ordering, and temporal masking

APD results from impaired neural function and is characterized by poor recognition, discrimination, separation, grouping, localization, or ordering of speech sounds. It does not solely result from a deficit in general attention, language or other cognitive processes.

As APD is one of the more difficult information processing disorders to detect and diagnose, it may sometimes be misdiagnosed as ADD/ADHD, Asperger Syndrome and other forms of Autism, but it may also be a comorbid aspect of those conditions if it is considered a significant part of the overall diagnostic picture. APD shares common symptoms in areas of overlap such that professionals unfamiliar with APD may misdiagnose it as a condition they are aware of.

Children with APD intermittently experience an inability to process verbal information. When children with APD have a processing failure; they do not process what is being said to them.

There are also many other hidden implications, which are not always apparent even to the child with the disability. For example, because children with APD are used to guessing to fill in the processing gaps, they may not even be aware that they have misunderstood something.

Characteristics—

HFA kids with Auditory Processing Disorder often:
  • have a preference for written communication (e.g. text chat)
  • dislike locations with background noise (e.g., a school lunch room)
  • have behavior problems
  • have sensitivities to loud noises
  • have difficulty with reading, comprehension, spelling, and vocabulary
  • have language difficulties (e.g., they confuse syllable sequences and have problems developing vocabulary and understanding language)
  • have low academic performance
  • have poor listening skills
  • have problems carrying out multi-step directions given orally
  • need to hear only one direction at a time
  • have trouble paying attention to and remembering information presented orally
  • may cope better with visually acquired information
  • having trouble paying attention and remembering information when information is simultaneously presented in multiple modalities (i.e., problems with multi-tasking)
  • need more time to process information
  • needing others to speak slowly

APD can manifest as problems determining the direction of sounds, difficulty perceiving differences between speech sounds and the sequencing of these sounds into meaningful words, confusing similar sounds such as "hat" with "bat", "there" with "where", etc. Fewer words may be perceived than were actually said, as there can be problems detecting the gaps between words, creating the sense that someone is speaking unfamiliar or nonsense words.

Those suffering from APD may have problems relating what has been said with its meaning, despite obvious recognition that a word has been said, as well as repetition of the word. Background noise, such as the sound of a radio, television or a noisy classroom can make it difficult to impossible to understand speech, depending on the severity of the auditory processing disorder. Using a cell phone can be problematic for a child with auditory processing disorder, in comparison with someone with normal auditory processing, due to low quality audio, poor signal, intermittent sounds and the chopping of words.

Many HFA kids who have auditory processing disorder subconsciously develop visual coping strategies (e.g., lip reading, reading body language and eye contact) to compensate for their auditory deficit, and these coping strategies are not available when using a cell phone

Those children who have APD tend to be quiet or shy – and even withdrawn from mainstream society due to their communication problems, and the lack of understanding of these problems by their peers.

One who fails to process any part of the communication of others may be unable to comprehend what is being communicated. This has some obvious social and educational implication, which can cause a lack of understanding from others. In grown-ups, this can lead to persistent interpersonal relationship problems.

Treatment—

Recent research has shown that practice with basic auditory processing tasks (i.e., auditory training) may improve performance on auditory processing measures and phonemic awareness measures. These auditory training benefits have also been recorded at the physiological level. Many of these tasks are incorporated into computer-based auditory training programs such as Earobics and Fast ForWord, which is adaptive software available at home and in clinics worldwide.

APD treatments include:
  • Auditory Integration Training typically involves a youngster attending two 30-minute sessions per day for ten days
  • Lindamood-Bell Learning Processes (particularly, the Visualizing and Verbalizing program)
  • Neuro-Sensory Educational Therapy
  • Physical activities (e.g., occupational therapy)
  • Sound Field Amplification

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

Kids on the Autism Spectrum & Lack of Demonstrated Empathy

“My son with high function autism is almost completely heartless when it comes to dealings with his younger sister. He’s rude and mean and sometimes aggressive with her. Is it common for a child with this disorder to have no empathy? Will this aggression become more violent over time?”

The lack of “demonstrated empathy” is possibly the most dysfunctional aspect of High-Functioning Autism (HFA). But I do use the term “demonstrated empathy” for a very important reason, and I want to be very clear about this: It’s not that these children have no empathy – they do. Rather, they often “give the impression” that they do not care about others. 
 
However, this is due to their “mind-blindness” and “sensory sensitivity” issues, and has little to do with their ability or willingness to have feelings for others.

Kids with an autism spectrum disorder experience difficulties in basic elements of social interaction, which may include the following:
  • lack of social or emotional reciprocity
  • impaired nonverbal behaviors (e.g., eye contact, facial expression, posture, gesture)
  • failure to seek shared enjoyments or achievements with others (e.g., showing others objects of interest)
  • failure to develop friendships

Unlike those with Autism level 3, youngsters with Autism level 1 (HFA) are not usually withdrawn around others. Instead, they approach others – even if awkwardly. For example, a child on the spectrum may engage in a one-sided, long-winded speech about a favorite topic, while misunderstanding or not recognizing the listener's feelings or reactions (e.g., the need for privacy or haste to leave). 
 
This social awkwardness has been called "active but odd." This failure to react appropriately to social interaction may appear as disregard for other’s feelings, and may come across as insensitive.

The cognitive ability of kids with HFA often allows them to articulate social norms in a laboratory context, where they may be able to show a theoretical understanding of other’s emotions; however, they typically have difficulty acting on this knowledge in fluid, real-life situations. 
 
Youngsters with the disorder may analyze and distill their observation of social interaction into rigid behavioral guidelines, and apply these rules in awkward ways (e.g., forced eye contact), resulting in a demeanor that appears rigid or socially naive. Also, childhood desire for companionship can become numbed through a history of failed social encounters.

RE: aggression. The hypothesis that children on the autism spectrum are predisposed to violent or criminal behavior has been investigated, but is not supported by data. More evidence suggests that kids with HFA are victims rather than victimizers. One review found that an overwhelming number of reported violent criminals with Aspergers ALSO had coexisting psychiatric disorders (e.g., schizoaffective disorder).

In a nutshell, what you’re dealing with may have more to do with good old fashion sibling rivalry than it does your son’s inability to empathize with others. But, having mind-blindness and sensory sensitivities does not give him a license to be aggressive with his sister. Aggressive behavior should be disciplined regardless of any autism-related deficits.
 
 
Resources for parents of children and teens on the autism spectrum:
 

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