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Manipulative Behavior in Children with ASD [level 1]

All folks manipulate others in some way. While this may seem like a character flaw, individuals use manipulation because it works. In fact, moms and dads and educators use manipulation to change behaviors in kids on a daily basis.

Manipulative behaviors can be a positive sign that the youngster is learning how to navigate the social world. At the same time, in some cases, manipulation is misunderstood or confused with frustration. Is a youngster with Aspergers or High-Functioning Autism (HFA) screaming because he is in pain, or because he wants to do something? Misunderstanding manipulation and frustrations is easy to do with this disorder.

Manipulation is sometimes used by the youngster to get what he wants or needs. Every instance of manipulation leads to an underlying legitimate request by the youngster. Yet, it is important to see that manipulation can also lead to behavior that is aggressive or otherwise extreme.

Various forms of manipulation can be seen in Aspergers and HFA kids as follows:

• Confusion Promotion: To manipulate the mother or father, the youngster brings up topics that are related, but not important for the discussion. In this form of manipulation, the goal is to confuse the mother or father to get what they want in a roundabout manner. Moms and dads often learn to ask direct questions to reduce the confusion level and not to give in to frustration over being confused.

• Playing Individuals against Each Other: Aspergers and HFA kids are very smart and this leads to more complex forms of manipulation, such as playing individuals against each other. This situation may result in confusion and frustration. The youngster may end up with what they want simply because of the lack of understanding in the group. This type of situation often happens between siblings or within a group home setting.

• Temper Tantrums: The standard temper tantrum is an example of a type of manipulation found in kids on the autism spectrum. In this situation, the youngster makes a request calmly. It may be unreasonable. When the youngster does not get his way, he may meet this negative response with yelling, destroying things, banging, stomping and even rolling on the floor. Moms and dads who are struggling with kids using temper tantrums learn to ignore them completely, except where the youngster may be injured.

Moms and dads end up frustrated when it comes to being manipulated by their children. You may be unsure of how to stop the poor behavior and get back to having a truthful and open relationship. Solutions often require patience and the ability to see what the underlying, unmet need is.

Here are some suggestions:

• Create an open environment as much as possible. Encourage your youngster to state what they want as directly as possible. Some Aspergers and HFA kids may not be able to communicate effectively.

• Disengage from the behavior occurring, but not the individual. If you feel powerless or unable to manage the situation, direct the individual to someone else.

• In manipulation, moms and dads and teachers may end up feeling powerless. In this situation, overcompensation may occur. A mother or father may become more controlling, for example, which pushes the manipulation farther. When you spot that powerless feeling, stop and assess the underlying circumstances first.

• Remember that the need is not the problem. The problem is the bad behavior and that should be the issue dealt with by the mother or father.

• Simply detach from the power struggle. Stop the process. If it continues, the manipulation will worsen, effectively causing the mother or father to become more controlling. This ends up leading to punishment.

For moms and dads in intense situations where manipulation is occurring readily, it may be helpful to find an support group, either online or locally. Meet with the group and learn strategies for tackling your youngster's particular needs. Some autism experts can also offer information and guidance on handling specific situations.


Pervasive Developmental Disorder—Not Otherwise Specified (PDD-NOS)

Question

What is PDD-NOS, and how is it any different than Autism?

Answer

Pervasive Developmental Disorder—Not Otherwise Specified (PDD-NOS) is a pervasive developmental disorder (PDD)/autism spectrum disorder (ASD). PDD-NOS is one of five forms of Autism Spectrum Disorders. PDD-NOS is often referred to as atypical autism.

Many parents experience a lot of confusion about the diagnosis of autism or PDD-NOS. There is even a lot of confusion among physicians and diagnosticians themselves. Some pediatricians have been known to tell parents that “a diagnosis of PDD-NOS is reserved for children on the spectrum who are curable.” Other pediatricians have told parents that “PDD-NOS is not even on the spectrum!” Many clinicians seem to take a milder diagnosis and simply label it PDD-NOS.


Let’s look at Autism first…

A. To be diagnosed with autism, you must have:
  • At least SIX (6) of the below symptoms from categories (1), (2) and (3)
  • You must have TWO (2) symptoms from (1- Social)
  • And ONE (1) each from (2- Communication) and (3- Behaviors and Interests)
  • The other one (or more) can be from any of the categories

(1) SOCIAL

Social interaction is impaired; must have TWO from list of symptoms below:

(a) Problems with nonverbal behaviors such as eye contact, facial expression, body postures and gestures used in social situations

Examples:
  • Body Postures – may hold arms close to sides, may try to avoid certain types of social contact, may appear unapproachable due to posture
  • Eye contact – different from peers, may only meet eye-gaze of certain people or have total lack of eye contact – or anything in between
  • Facial expression – may seem inappropriate to what the situation warrants, may have blank gaze, may not greet you with a smile, may have same expression on face most of time – or any combination thereof
  • Gestures – may not respond to a hand held out to shake hands, arms out for hugs etc. May not understand social ‘cues’ we take for granted

(b) Does not make friends like other children in same age group

Examples:
  • Children learn to play by imitation; this child is not imitating the other kids
  • May approach peers, but not to play…watch and see if the child is approaching in the same way peers approach each other
  • Seems to have no interesting in socializing with peers
  • While peers are learning to play together, the child is off by themselves

(c) Does not share objects with others for enjoyment

Examples:
  • Does not bring you something that interests them to share with you
  • Does not point in the distance (i.e., to an airplane) to share with you something that interests them
  • Look at peers and how they show things they are proud of (e.g., artwork) and see if child does the same thing

(d) Lack of social (consisting in dealings or communications with others) and emotional (characterized by emotion) ‘give and take’; does not respond to social or emotional cues

Examples:
  • Does not attempt to comfort someone who is crying
  • Does not become grateful or excited in anticipation of outing or gift (in the same way a peer would)
  • Does not reply “hello” to your greeting (without prompting)
  • Does not seem especially happy to see you when you return home after work
  • Does not seem to pick up on the ‘vibes’ of others
  • Does not seem to seek out or enjoy the company of others; may be aloof
  • Does not smile back when you smile at him/her (without prompting)

(2) COMMUNICATION

Communication difficulties; must have at least ONE of the below symptoms:

(a) Delay in, or total lack of, speech, but does not use gestures to communicate (delay = not at same level as peers)

Example:
  • Does not ‘mime’ his/her needs (i.e., Mime ‘eating’ if hungry)
  • Does not point to what s/he wants
  • Does not shake or nod head for ‘no’ or ‘yes’
  • Does not shrug shoulders to show s/he ‘doesn’t know’

(b) If child can speak, cannot start or hold up their end of a conversation (appropriately)

(c) May echo phrases, words, songs, parts of movies etc.

(d) Does not engage in imaginative play (as peers)

Examples:
  • Will not make dolls ‘talk’ to each other
  • Will not pretend to brush doll’s hair
  • Will not pretend to drink from toy teacup
  • Will not take a toy airplane and ‘fly’ it around the room while saying ‘zoom’
  • Will not use items for make belief (i.e. a stick for a cane or a magic wand)

(3) BEHAVIORS AND INTERESTS

Repetitive behaviors, interests, and activities – child may get angry if this ‘pattern’ is interrupted; must have at least ONE of the below symptoms:

(a) Child is so focused on an interest that to remove the interest will result in a meltdown

(b) Routines or rituals must be followed; they appear to have no function

Examples:
  • Family members must always sit in same seats; failure may result in tantrum
  • If you go to the video store, you must rent “The Smurfs” every time or risk a tantrum
  • Lining up cars is not necessarily playing ‘garage’; if you attempt to join in, the child will tantrum, walk away, push you aside, etc.
  • Must take same route home; one deviation may cause meltdown
  • Must wear red shirt on Tuesday or risk a tantrum etc

(c) Repetitive behavior such as hand flapping, rocking, ear flicking, chewing on clothing, vocal ‘stims’, spinning etc. (establish if this is self-stimulatory by doing a functional assessment)

(d) Preoccupied with parts of objects

Examples:
  • Cover parts of book so that s/he can look at one piece
  • Focus on one part of a toy (i.e. doll’s eyes)
  • Spins wheels of toy cars

B. Child is either delayed (not same ‘age’ as peers) or acts differently from peers in ONE of the following (must be noticeable before age three): (1) social interaction, (2) language as used in social communication, or (3) pretend play

C. Child does NOT have Rett’s or Childhood Disintegrative Disorder

Treatment for autism is a very intensive, comprehensive undertaking that involves the youngster's entire family and a team of professionals. Some programs may take place in the home with professionals and trained therapists and may include Parent Training for the youngster under supervision of a professional. Some programs are delivered in a specialized center, classroom or preschool. Families usually decide on one plan of intervention that works best for them. Typical types of intervention are Applied behavior analysis (ABA), Pivotal response therapy (PRT), The P.L.A.Y. Project, Verbal Therapy, Floortime, Relationship Development Intervention (RDI), and The Son-Rise Program.


Next we will look at PDD-NOS…

PDD-NOS is a diagnosis by exclusion. If a child presents with some symptoms from (1), (2), and/or (3) above, and their pattern of symptoms is not better described by one of the other PDD diagnoses (i.e., Autism, Aspergers, Rett’s, or Childhood Disintegrative disorder) then a professional might decide that a diagnoses of PDD-NOS is warranted.

When comparing PDD-NOS to Autism, PDD-NOS is used when a child has symptoms of autism as above, but not in the configuration needed for an autism diagnosis. Social component is where the most impairment is seen. Children who fail to meet criteria for autism and don’t have adequate social impairment typically have a developmental disability, and their symptoms can be accounted for by that.

Looking at above description:

“299.00 Autism - To be diagnosed with autism, you must have at least 6 of the below symptoms from (1), (2) and (3). You must have two symptoms from (1) and one each from (2) and (3) – the other two can be any of the other symptoms.”

PDD-NOS is most often diagnosed when children have significant social impairments, but don’t have the symptoms in area (3). A child with PDD-NOS may have the same (or more, or less) number of symptoms as a child with autism, but instead of having 2 from #1 and one each from #2, the child might have 1 symptom from #1 and one from #2, plus two from #3.

PDD-NOS is typically diagnosed by psychologists and Pediatric Neurologists. No singular specific test can be administered to determine whether or not a youngster is on the spectrum. Diagnosis is made through observations, questionnaires, and tests. A mother or father will usually initiate the quest into the diagnosis with questions for their youngster's doctor about their youngster's development after noticing abnormalities. From there, doctors will ask questions to gauge the youngster’s development in comparison to age-appropriate milestones. One test that measures this is the Modified Checklist of Autism in Toddlers (MCHAT). This is a list of questions whose answers will determine whether or not the youngster should be referred to a specialist such as a Developmental pediatrician, a neurologist, a psychiatrist, or a psychologist.

Because PDD-NOS is a spectrum disorder, not every youngster shows the same signs. The two main characteristics of the disorder are difficulties with social interaction skills and communication. Signs are often visible in babies, but a diagnosis is usually not made until around age 4. Even though PDD-NOS is considered milder than typical autism, this is not always true. While some characteristics may be milder, others may be more severe.

Once a youngster with PDD-NOS enters school, he will often be very eager to interact with classmates, but may act socially different than peers and be unable to make genuine connections. As they age, the closest connection they make is typically with their mom and dad. Kids with PDD-NOS have difficulty reading facial expressions and relating to feelings of others. They do not know how to respond when someone is laughing or crying. Literal thinking is also characteristic of PDD-NOS. They are unable to understand figurative speech and sarcasm.

Inhibited communication skills are a sign of PDD-NOS that begins immediately after birth. As an infant, they will not babble, and as they age, they do not speak when age appropriate. Once verbal communication begins, their vocabulary is often limited. Some characteristics of language-based patterns are: repetitive or rigid language, narrow interests, uneven language development, and poor nonverbal communication. A very common characteristic of PDD-NOS is severe difficulty grasping the difference between pronouns, particularly between “you” and “me” when conversing. Difficulty with this would look something like this:

Parent: “Do you want to color this or do you want me to?”

Child: “Me.”

This “me” response would be because, since the mother or father spoke the word "me", the youngster thinks that "me" still applies to the parent. The youngster with autism cannot grasp - without intervention - that the pronoun assignment of “me” refers to the speaker, and not to whomever spoke it first.

A diagnosis of PDD-NOS is not necessarily a less-severe one than a diagnosis of autism, but can be sometimes. Severity of any spectrum disorder can be determined by the amount and severity of symptoms listed above.

It is imperative to obtain a thorough psychological assessment performed. If you do not understand during any part of the assessment, ask questions. You should feel comfortable to go home and ‘digest’ the information given to you, form any questions or concerns and contact the diagnosing clinician to get your answers.

Aspergers in Females

From A Woman's Perspective:

A young lady who has participated for several years in a social group for adults with high functioning autism and Asperger’s Syndrome sponsored at our TEACCH Center in Asheville, recently remarked, “There aren’t a heck of a lot of ladies who have Asperger’s Syndrome or autism. The majority are males, and although we get along with the guys, there are some issues that they are never going to understand. I wish there was more information specifically for ladies who have autism.” Her comment prompted the initiation of the first ladies’ group at the Asheville TEACCH Center. 

While talking with this lady, who is in her 20’s, I was reminded of my own early adulthood. I remember the strong support of “ladies’ consciousness-raising groups” that sprouted up on college campuses and in living rooms in the 60’s and 70’s. While struggling for and demanding equality between the sexes in the society at large, we discovered that there were important distinctions that needed to be honored. Together we explored and defined what “being a lady” was about, in the company of other young ladies searching for self-awareness. Being a member of a ladies’ “CR” (Consciousness-Raising) group was educational, exciting, exhilarating, emotional, relevant…and never boring.

According to Tony Attwood and other professionals in the field, ladies with high functioning autism and Asperger’s Syndrome may be an under diagnosed population. If this is true, some of the reasons may be attributed to gender differences.

Are there behaviors that are seen in females with Asperger’s Syndrome, but not in males, that we haven’t yet identified as part of the profile… or certain gender-related behavior that might fool us into ruling out the diagnosis? What about the “pretend play” that has been observed in many young females at our center, which on the surface appears to be quite creative and imaginative? There seem to be many females (on the spectrum) who are enamored with princesses, fantasy kingdoms, unicorns, and animals¬¬. How many diagnosticians observe these interests and skills as imagination, and rule out a diagnosis based on these behaviors? Might this interest in imaginary kingdoms and talking animals be more common among females than males, yet still exist alongside other autistic/Aspergers traits?

And what about one typical response to confusion or frustration--hitting or other such outward expressions of frustration? Does this type of acting out occur more often in males with autism than in females? Is confusion or frustration simply easier to identify in males than females because we already look for it? Among the general population, it is commonly thought that males do “act out” more than females. (You sometimes hear teachers complain there are too many males in his or her class, and its impact on the class’ personality!) Is it easier to identify males as having autism because these behaviors are more obvious, than females who may experience inward or passive signs of aggression?

Professionals whose task it is to diagnose individuals with autism or Asperger’s Syndrome need to learn more about the full range of qualities and personality differences unique to females and ladies on the spectrum.

And what about the females’ and ladies’ route to self-understanding? Indeed, several ladies I have worked with who have Asperger’s Syndrome have talked about the unique challenges they experience because they constitute a “minority” within this special group of society.

I believe that in order to gain self understanding, each person with - or without - autism needs to see his or her own reflection in the world. I call this ‘seeing one’s place.’ For people with autism or AS, who already are challenged in this area, it becomes imperative that they meet, listen to, talk with, read about, and learn from others with autism. What happens as a result of this coming together is that they are able to see their ‘reflection’ and better understand their own unique styles of thinking and being. Ladies with autism, although benefiting greatly from getting to know other people with autism, often find that they might be the only female (or one of a very few ladies) in the group.

When I asked the ladies we see at our center if they would be interested in being in a ladies’ group, I had hoped that the group could fill a gap in our services. I also hoped that I would learn more about what it means to be a lady with autism. The more I meet with these ladies, the more I realize we have far to go in understanding the unique challenges that ladies with autism or Aspergers face.

One lady explained that, from her perspective there is subtle interaction between two sets of issues. “Problems related to the [autism] spectrum are combined with problems of society’s expectations of ladies. How one looks, what one wears, how one is supposed to relate socially, that a lady is supposed to have a natural empathy towards others, expectations about dating and marriage…” Ladies are affected by autism in the same ways as are their male counterparts; however, they are doubly challenged by the added assumptions that society places on the female gender.

At the risk of stereotyping, any man who is a rational thinker, and not emotionally in tune with others, is often thought of as having “typical male behavior” (think of the TV show “Tool Time”). A female exhibiting these same personality traits might be regarded as odd, annoying, cold, or depending on the situation, even mean-spirited. Autism, with its particular effects on personality, causes one to appear more rational and less emotionally responsive or empathetic to others. Ladies with autism note that these expectations indeed may weigh more heavily on them, just because they are ladies.

At the first meeting, the group members requested specific topics for discussion, topics that they encounter in daily life or ones which they are currently pondering. These topics included issues that are relevant to ladies at large such as personal safety; dating and sex; or being taken advantage of when your car needs repair. Other issues they raised were felt by group members to possibly be more significant for ladies with autism, but common to all--being pressured to conform by getting married; to “act like a lady”; and issues about one’s appearance--to have to “look a certain way”.

However, there were topics that all agree are a direct result of being a lady with autism, such as common behavioral and social expectations by the society at large. At the top of the list were the expectations of being sensitive to others and displaying empathy.

Ladies with autism have expressed that they feel that more is expected from them than from their male counterparts, simply because of their gender. Members of the group felt these expectations to be sensitive and empathetic, typically attributed to ladies, are unfair and difficult to meet. Discussion centered on how these behaviors require skills like the ability to accurately read and respond to body language, along with the inherent desire to “take care of others, emotionally”. Interestingly, after discussing these issues, the first requested topic to explore was reading body language and how to tell if someone is trying to take advantage of you.

The topic that generated the biggest emotional response from the group was the personal experience of feeling like one was “being treated like a child”. Parents, in general, are often more protective of their daughters than their sons. Daughters with autism talked about feeling overly protected into womanhood. In many cases, this is needed, although without understanding the parent’s perspective, the adult daughter can feel unfairly babied. Some ladies talked about the resentment they felt toward people, who for many years had been trying to teach them “socially appropriate” ways of acting. “Enough already!” was a common response.

The desire to be respected as an individual, and as a lady, was voiced clearly and strongly. Although this desire is probably equally shared among grown men with autism, the ladies voiced these desires clearly, with deep emotion and passion, when talking with other ladies.

Sexual Curiosity in Kids on the Autism Spectrum

Question

At this moment in time, I feel like my heart is broken. A good friend of ours contacted my husband today and said that last week our son K___, 14, said sexual things and showed dirty pictures. We asked K___ and he said nothing was said or done. When our friend came over with his 10 year old son, we all sat down and K___ just sat there as the 10 year old told how K___ put on a DVD where there were women kissing and two people having sex though they didn’t see anything. Along with the 10 year old was his 7 year old sister. K___ has a human body book and he showed the 7 y/o where the penis goes into the vagina. K___ also asked the 10 y/o if he knew that a man’s penis can go into another’s bum and did he want him to try it out on him. Needless to say, I felt nauseous and in shock. Our son has sex and puberty books, and as a rule, asks if he wants to know anything. I am totally gob smacked. I have read discussions on other websites and I know we are not alone. Other parents have young teens with an autism spectrum disorder who are sexually obsessed and confused. I really don’t know what to do. Please have you any advice you could give us.

Answer

I understand your confusion and embarrassment over your child's behavior with his friend. Sexual acting out and behavior is almost always tough for moms and dads to deal with, even when they understand that, at least to some degree, it's "normal."

Kids who demonstrate an unusual interest in sexual matters often have been introduced to it by other grown-ups, kids, or by viewing sexual material. Kids rarely express their questions about these matters openly; they "know" that sexual stuff is taboo and sometimes makes grown-ups uncomfortable. It's also possible that having intercourse explained to him when he was young has created some confusion for your child that he is "acting out" in his behavior.

One mother reported that her child with high-functioning autism was inadvertently shown a sexually explicit cartoon when he was five, and he went through several months of heightened sexual interest and questions – which gradually disappeared when he realized that he wasn't shocking his mother and that she calmly answered any of his questions. Do some thinking about what you want your child to believe about sex and intimacy, and then find ways to calmly teach and share those concepts with him.

Your child needs teaching about appropriate boundaries and behavior, not punishment. By showing gentle curiosity and asking "what" and "how" questions, you can open the door to talking about sex, rather than having him act it out. You may want to get one of the many excellent books explaining sexuality for young kids and read it together, openly reminding him that this subject has come up before and you're wondering if he has questions.

The phrase, "I've noticed that. . ." is often a good beginning. You can let him know, without anger, that “showing dirty pictures” to other kids is not acceptable, but it is okay to have questions and be curious, and that he can ask you anything. Your own attitude (kind and firm) will let him know that you mean what you say. If you are calm, open, and approachable, he may be able to relax enough to explore the subject with you.

If your child continues to be intensely interested in sexual matters or behaves inappropriately, you may want to find a therapist who is skilled in working with kids on the autism spectrum to help you and your child work through these issues.

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Helping Family & Friends To Understand Aspergers and HFA

"Any advice on how to approach our friends and family to tell them about our son's recent diagnosis of high functioning autism ...or would it be better to say nothing?"

RE: "...would it be better to say nothing?" It would be good for your friends and family to understand High-Functioning Autism (HFA), otherwise they will come to their own conclusions about your son's behavior, which will undoubtedly be way off base.

Aspergers and HFA are often mentioned in the newspapers or on television, but the truth is that, besides remembering Dustin Hoffman's performance in the movie "Rain Man" as an Autistic savant, most people have no clue about what an Autism Spectrum Disorder (ASD) is.



If you’re an “old pro” at parenting a child with Aspergers or HFA, then you probably have had a lot of explaining to do to family and friends through the years. For those of you who are just now starting this journey, here are some things you can do to help family members with their understanding of the disorder:

1. Allow family members to attend Individualized Education Plan (IEP) meetings. In addition, family members should establish a relationship with teachers and be perceived as part of the “treatment team.” Collaboration in this way is critical to school success.

2. Assure others that even though there is no single known cause or cure, HFA is treatable. Although it is a life-long disorder, studies show that early diagnosis and intervention can lead to significantly improved outcomes for kids. With the support and love of family and friends, along with appropriate services, kids with HFA can live full, healthy and meaningful lives.

3. Different circumstances call for different parenting. Explain that while you are trying to give your youngster as normal an environment as possible, there may be things you will do (or not do) for your “special needs” child than you would for other children in the family. For example, there may be different rules and consequences, sleeping arrangements, dietary or safety concerns. If necessary, gently explain that this doesn't mean that you're playing favorites or "babying" your HFA youngster -- you are simply addressing his unique needs and protecting him from unnecessary stress.

4. Don't be offended. Assure family members that your youngster's lack of social interactions with them (e.g., how he may avoid looking them in the eye or be uncomfortable with the usual hugs or other physical contact) is simply par for the course and not a personal affront. The same goes for a lack of other social graces, and how he often says whatever is on his mind. An HFA kid might bluntly say, "Aunt Rosie is fat" or, when given a gift, "I don’t play this game." He doesn't mean to be offensive -- he is just reporting what he observes.

5. Encourage family members to discuss their fears, disappointment, confusion and concerns. Remember the feelings you, the parent, experienced upon hearing the diagnosis, and realize that other family members will most likely experience similar emotions. In addition to the concern they have for their grandson or granddaughter, niece, nephew, sibling, etc., they also will have concerns for you.

6. Encourage others to expect the best from your youngster. Focus on the youngster's special abilities. Treat him as you would any other youngster or family member to the extent possible. Realize he is more “like” other kids than he is “different.”

7. Give information about HFA on a need-to-know basis. A bombardment of information may cause confusion or undue alarm. For instance, you might want to skip the nitty-gritty details of a GFCF diet and postpone telling stories about HFA children who run away or who still aren't potty-trained by age 8.

8. Offer friends and family a short list of Internet resources. That way they can explore the world of HFA at their own pace. That said, you might want to ask that they not forward you every report they read about Aspergers and HFA, or start a debate about ASD causes and "cures."

9. Provide some tips regarding purchasing gifts, toys or planning outings. Gently remind family members of your youngster's specific sensory issues, phobias or environmental triggers to avoid unpleasant scenes or meltdowns while in their care.

10. Remind everyone the importance of accepting your youngster for who he is, not who they hope him to be. Children with HFA may need more space, more understanding and more patience. Family members may need to interact with your youngster on his own terms. For example, don't insist on hugs or other physical contact, don't tease (even good-natured joking), and unless told otherwise, defer to mom and dad for any concerns, problems or discipline issues.

11. Teach family the necessary skills to assist your youngster in your absence, even if this care would only be needed on an emergency basis. Require family members to maintain and stick to schedules, special diets and routines. Also leave a list of service providers who can be contacted if the family caregiver has concerns or questions regarding your youngster's behaviors or actions while you're unavailable.

12. If one or more family members simply don’t “get it,” then suggest a support group. If your extended family has difficulty understanding or accepting the diagnosis, then they should consider getting in touch with a support group in order to hear other families' stories, which can help your family members gain a better understanding of the disorder. They can also attend special events or training opportunities, and if necessary, seek family counseling services.


How To Parent An Aspergers Child: From Childhood To Adulthood

What works for your Aspergers (high functioning autistic) child at the age of 3 may not work for him/her at the age of 13. Here are some important tips for parenting children on the spectrum  across the lifespan:

Childhood—

After your youngster is diagnosed with Aspergers, you may feel unprepared or unable to provide him/her with the necessary care and education. Know that there are many treatment options, social services and programs, and other resources that can help.

Some tips that can help you and your Aspergers youngster are:

• Contact your local health department or autism advocacy groups to learn about the special programs available in your state and local community.

• Keep a record of conversations, meetings with health care providers and educators, and other sources of information. This will help you remember the different treatment options and decide which would help your youngster most.

• Keep a record of the doctors' reports and your youngster's evaluation. This information may help your youngster qualify for special programs.

• Talk with your youngster's doctor, school system, or autism support groups to find an autism expert in your area who can help you develop an intervention plan and find other local resources.


Adolescence—

The adolescent years can be a time of stress and confusion for any growing youngster, including adolescents with an autism spectrum disorder. During adolescence, teens become more aware of other people and their relationships with them. While most adolescents are concerned with acne, popularity, grades, and dates, adolescents with Aspergers may become painfully aware that they are different from their peers. For some, this awareness may encourage them to learn new behaviors and try to improve their social skills. For others, hurt feelings and problems connecting with others may lead to depression, anxiety, or other mental disorders.

One way that some Aspergers adolescents express the tension and confusion that can occur during adolescence is through increased aggressive behavior. Teens with Aspergers will also need support to help them understand the physical changes and sexual maturation they experience during adolescence.

If your adolescent seems to have trouble coping, talk with his or her doctor about possible co-occurring mental disorders and what you can do. Behavioral therapies and medications often help.

Transition to Adulthood—

The public schools' responsibility for providing services ends when a youngster with Aspergers reaches the age of 22. At that time, some families may struggle to find jobs to match their adult child’s needs. If your family cannot continue caring for an adult child at home, you may need to look for other living arrangements.

Long before your youngster finishes school, you should search for the best programs and facilities for young adults with Aspergers. If you know other moms and dads of Aspergers adults, ask them about the services available in your community. Local support and advocacy groups may be able to help you find programs and services that your youngster is eligible to receive as a grown-up.

Another important part of this transition is teaching young people with Aspergers to self-advocate (i.e., take on more responsibility for their education, employment, health care, living arrangements, etc.). Grown-ups with Aspergers must self-advocate for their rights under the Americans with Disabilities Act at work, in higher education, in the community, and elsewhere.

There are many options for grown-ups living with Aspergers. Helping your adult child choose the right one will largely depend on what is available in your state and local community, as well as your youngster's skills and symptoms.

Below are some examples of living arrangements you may want to consider:

Independent living. Most grown-ups with Aspergers are able to live on their own. Others can live in their own home or apartment if they get help dealing with major issues (e.g., managing personal finances, obtaining necessary health care, interacting with government or social service agencies, etc.). Family members, professional agencies, or other types of providers can offer this assistance.

Living at home. Government funds are available for families who choose to have their adult child with Aspergers live at home. These programs include Supplemental Security Income, Social Security Disability Insurance, and Medicaid waivers. Information about these programs and others is available from the Social Security Administration (SSA). Make an appointment with your local SSA office to find out which programs would be right for your adult youngster.

Long-term care facilities. This alternative is available for those with Aspergers who need intensive, constant supervision.

Other home alternatives. Some families open their homes to provide long-term care to grown-ups with disabilities who are not related to them. If the home teaches self-care and housekeeping skills and arranges leisure activities, it is called a "skill-development" home.

Supervised group living. People with disabilities often live in group homes or apartments staffed by professionals who help with basic needs. These needs often include meal preparation, housekeeping, and personal care. People who are more independent may be able to live in a home or apartment where staff only visits a few times a week. Such residents generally prepare their own meals, go to work, and conduct other daily activities on their own.

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

Aspergers versus Nonverbal Learning Disorder: What’s the Difference?

Question

My 4-year-old was diagnosed with Aspergers a month ago. I went for a second opinion, and that doctor doesn’t think she has Aspergers – he thinks it is NVLD. So I was reading about them and I understand that they are very similar (except that with AS, they have obsessions). My daughter does not have anything she is obsessed with, but she does need structure and routine throughout the day to regulate herself. My daughter also has Sensory Integration Disorder, which from what I understand can coexist with AS. I don’t know if I should get a 3rd opinion or just keep the Aspergers diagnosis so she can get services in school. The doctor that says he thinks it is NVLD said that Aspergers usually isn’t diagnosed until age 5 or 6, which I don’t think is true. I am just looking for your input.

Answer

There is often confusion between Aspergers (high functioning autism) and Nonverbal Learning Disabilities (NLD). In fact, sometimes these two terms are mistakenly used interchangeably. There are some basic differences though.

NLD is not included with Aspergers and Autism under the DSM-IV’s umbrella term of Pervasive Developmental Disorders. Both Aspergers and NLD children may show similar social and attentional difficulties, strong verbal skills and a confusing display of strengths and weaknesses. There are a few key items that help in a differential diagnosis though:
  • if the child is helped rather than hindered by your verbal explanations, then look to NLD
  • if the child’s skill at deriving meaning from what he sees is a strength, then it’s more likely he has Aspergers

The Aspergers profile of neuro-psychological assets and deficits is very similar to the NLD profile. Both have neuro-developmental abnormalities involving functions of the right cerebral hemisphere. In both disorders, there is no delay in cognitive development and speech. In fact, early verbal ability is one of the hallmarks of NLD; children with NLD are often extremely verbal and early readers.

Aspergers has been conceptualized as a "Non-Verbal Learning Disability". A comparison of NLD and Aspergers children revealed 20 out of 21 similarities, including a verbal over spatial discrepancy. Aspergers may be an extreme form of NLD.

Both Aspergers and NLD children seek out social interaction, but are often rejected by their peers. A related problem shared by both disorders is the inability to perceive or understand nonverbal cues (i.e., they are oblivious to nuances of facial expressions, body language, tone of voice, gestures, and appropriate spatial distance). Children without Aspergers or NLD use eye contact appropriately and understand that you can tell how someone feels by looking at their face. These cues are "invisible" to those with Aspergers and NLD.

The most significant problem for both Aspergers and NLD children is in the area of social relationships, whether at home or school:
  • exclusion and rejection become part of life
  • living with this social disability and constant rejection often leads to uncertainty, confusion, insecurity, depression, and anxiety, which they may try to relieve by creating routines and rituals
  • they are often accused of rudeness, laziness, lack of caring, or a poor attitude
  • they are often misunderstood
  • they can't "connect" socially
  • wanting to make friends and fit in, but unable to, they may respond by withdrawing, acting out with emotional outbursts, or refusing to cooperate

Aspergers and NLD diverge in the affective area. Aspergers children do not feel the same range of emotions as children with NLD. Though they may feel very deeply about many things, they may not cry or smile when it's deemed appropriate. They often have a flat affect, and have difficulty with initiating or experiencing normal social relationships. Conversely, children with NLD have normal emotions, but are inept in expressing them - and in recognizing them in others - to the extent that they are expressed non-verbally.

Children with Aspergers generally have greater social problems. Their highly restricted interests present an additional obstacle to their social functioning. These restricted interests seem to be idiosyncratic to Aspergers children (“restricted interests” is not mentioned in the literature about NLD). This is the main difference between the two disorders, as they are most frequently defined clinically. The Aspergers child’s odd behaviors (e.g., rocking, flapping) can also contribute to his social problems (behaviors that are not present in NLD). In contrast, the NLD child’s social ineptness is mainly due to his inability to read nonverbal communication (e.g., facial expressions and gestures).

Literature on Aspergers doesn't mention problems with visual spatial issues, which are a major problem area for children with NLD. In fact, many “Aspies” respond well to visuals and diagrams, and are visual learners. Many find work as engineers or architects. In contrast, Children with NLD don't respond to physical demonstrations and may not understand diagrams. They can't learn by watching, and need everything explained in words. Thus, these children tend to become wordsmiths (e.g., teachers and writers) while “Aspies” often excel in math and find work in computer fields.


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==> 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

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COMMENTS:

•    Anonymous said… Aspergers is no longer diagnosed. She should be diagnosed with Autism Spectrum Level I. NVLD is not diagnosable via the DSM 5. Autism is diagnosed young which is important because she will likely need individual therapy, occupational therapy, and a social thinking group.
•    Anonymous said… Don't forget that Aspergers in girls also presents quite differently in part to Aspergers in boys. I feel strongly that any assistance DNS therapy is personalised on the child's individual needs based on the further assessments so take whichever diagnosis will allow you to access the help you need, it won't affect the outcomes
•    Anonymous said… Each child doesn't have to hit every single box to be diagnosed-for my son I do not notice any flapping or rocking-- He is an Aspie but I have also noticed the older he gets the less sensory issues he has- they are so mild now- mostly hands in early am- ot says from no pressure on them all night so am is pretty brutal- he describes them as way to soft- but rest of day very mild if at all- hoodie now just when he is in strange place- it used to be hoodie all the time everywhere even when he was at home watching tv- so the demonstration of penguin  🐧 saying every one  ☝ on spectrum is different is so so true! And I'm realizing he is mastering issues within his self so well! Also as far as interest he does have only one at a time just like friends - only one at a time- but that's his interest - and it seems more like an interest to me v/s obsession--when he was smaller it seemed more like an obsession- strange how things start balancing more as they get older- I'm sure his ot and phyc therapy is doing great things as well!
•    Anonymous said… I had many many doctors/therapists fail to give the correct diagnosis for my daughter with Aspergers -they diagnosed her with generalized anxiety which was correct but it stems from aspergers - she also has sensory issues - I knew that she was on the spectrum but no one else believed it to be true - so go with your gut - truly Mom's know their child best - I wish I did so that I got my child the correct therapy when she was younger -
•    Anonymous said… My daughter has a Aspergers diagnosis. At age 4 she did not obsess over anything, but at age 10 she shows plenty of obsessive behaviors. Things can change over time I guess, so I wouldn't rule out Aspergers based on that behavior not presenting at 4, it may show up as she matures.
•    Anonymous said… My Son has NVLD and my daughter has Aspergers, they are similar but different. This was interesting to read and realize the differences they do have.
•    Anonymous said… My son was diagnosed with Asperger's at 6 & 1/2. I'm not sure what you do if you feel like the diagnosis doesn't quite fit because with our son it's definitely exactly who he is. I can say the extra help to get him through his school day has made a world of difference. The school classifies him as High Functioning Autistic. He almost failed first grade and in third grade,last year, he made honor roll every marking period.. Teacher's knowing your child has a disability instead of thinking he/she is just a disruptive child makes a world of difference in how they are treated and your child's comfort level in school. Right now I think it's a matter of which diagnosis will get you the services you need at the school. If there is a way to make sure the teacher's will work with you to help her work on transitioning through her school day and with her sensory issues then maybe you could even wait on submitting a diagnosis to the school until Kindergarten or 1st grade when there days have a lot more school work and sitting still during the day. It may make it more clear to everyone what her most pressing issues will be moving forward and what diagnosis is most accurate.
•    Anonymous said… My son was diagnosed with NVLD at 10 and it didn't seem to fit from the first moment. I'm still trying to figure out where to go from there. My hunch as he was mildly on the sprctrum. I wish I understood NLVD well enough to know my next steps better.
•    Anonymous said… They dont have to be obsessed with something, sometimes it could be that they like things a curtin way "obsession stands for a broad range of things. Most doctors totally miss understand aspergers and only look for specific things instead of just different quirks about the child and getting the sensory side of things right. There is no list every person is different so therefore there should not be one set list. Apsergers would have to be one of the most complex things to understand on the planet and thats comming from a mother who has aspergers and 3 of her children and each one of us carries different symptoms and tics and quirks. :) ive come to realize a good 90% of the world actually have it in some way
•    Anonymous said… We were told my daughter has aspergers too at the age of 5, she is 7 now and does get help from school. When I look at the criteria for Aspergers alone, it's nothing like her. But then when I look at HFA highly functioning autism or highly sensitive aspergers it's her to a tea!! She is also on the waiting list for autism and adhd too. The thing is with these Is that the spectrum is so huge it is difficult to say exactly what boxes she ticks. The main point is, that is will be able to get some form of help and hopefully it will help your daughter overcome some of her issues. Good luck xx
•    Anonymous said… Yes, our daughter was diagnosed at 4 with NLD. (Non-verbal). We felt that there was more to it than that. Someone else in this thread said that you don't have to check every box to have AS, and I agree. We are looking into AS now because it seems to fit better. We lived in OK when she was diagnosed and now live in UT. Here it seems no one recognizes NLD as a diagnoses. They tend to think it's something diagnosticians use when they have nowhere else to turn and aren't certain on the results. You may also look into PDD-NOS. it's also on the spectrum, but is a little different than Aspergers. I also feel 4 is a young age to diagnose definitively, and it may change over time, but if you have an AS diagnosis I would run with it. It's not the name that matters, it's the symptoms. If you can get better help with one diagnoses than another, I'd say take it! Our babies need the most help they can get. If you want to talk more, I'd love to visit. Just PM me. We all need friends, including me!

Post your comment below…

Aspergers and Lack of Eye Contact

Eye-to-eye contact is a type of communication. However, there ought to be a shared language involving two individuals when eye-to-eye contact is made. A person should be able to read what the other person is thinking and feeling. That's the way "neurotypical" (i.e., non-Aspergers) eye contact functions. With Aspergers (high functioning autism) however, that's not often the situation.

Eye-to-eye contact isn't something that is natural or even desirable to Aspies. They have trouble with the interpretation of this language. Many reasons exist why they can't share the language.

First, looking at someone's eye balls is extremely awkward. It is just like looking at the headlights of a train. Eye balls flicker and move, which can be unpleasant for those who have Aspergers. Even if they do make eye contact, they do not know the silent language. They need to learn each thing that the eyes tell them, from very obvious to very subtle.

The next issue is in what they send. They have no clue about what messages they're sending using their eyes. That triggers confusion for the one who is attempting to read them, because they don't send obvious messages. With this confusion on both sides, conversation using this method doesn't work well. The big deal relating to this whole eye-to-eye contact issue is the fact that our culture has built in a lot of meaning into the use of eye contact. We've interpreted this as an indication of trustworthiness and not hiding something, being secure, and the skill of listening.

These are the expectations that are put on everyone in this culture, whether we are able to make eye contact or not. If you don't use it, you are charged with lying, not being comfortable, having something to hide, not listening, etc. This may not seem sensible when you have Aspergers. I have yet to meet individuals with Aspergers who are natural liars. A number of them have had to learn to be devious when they need to be and tell the little white lies, so they don't hurt the feelings of non-Aspergers individuals. Bluntness has never harmed anybody. They lie only if they have to, and it is not very natural to them. Therefore, convinced that they lie due to not having eye-to-eye contact makes no sense.

Eye contact has nothing to do with listening. The eyes as well as the ears aren't linked on a single band. Aspergers people may hear and learn without needing to really look at somebody. There's also peripheral vision, which is looking - but from the sides of the eyes. Non-Aspergers individuals believe that if the eye-to-eye contact isn't full in the face, it's not eye contact. Aspergers individuals can be comfortable and never give eye-to-eye contact. Actually, they're much less comfortable should they have to give it every time. It is stressful and diminishes their self-ease. The truth is, should they meet someone who they don't know, they don't give eye-to-eye contact. They have a tendency to avoid stressing themselves to provide eye-to-eye contact and have a dialogue simultaneously.

Eye-to-eye contact is for the benefit of non-Aspergers individuals and not much of a benefit for the people with Aspergers. They can't do it adequately, nor communicate it very well. Additionally, it stresses them and makes them uneasy.

The Aspergers Comprehensive Handbook

ASD Teens & Aggression

“My teenage son is very aggressive and lacks any type of impulse control. He cannot be left alone with his siblings. Does you have any recommendations? I know he does not want to do these things, because when we talk about it, he says he loves his sister, etc., but he hurts her all the time. My poor daughter has to put up with his aggressions on a daily basis. I can't watch him every second he's awake. I also can't put either child in a protective bubble or send my son to his room and leave him there all day. I really don't know what to do with him and I'm not a big advocate of drug therapy.

He's starting to internalize his behavior, and now said to me this morning that he's a bad boy even though no one tells him that, not us, or his teacher. I worry about his self-esteem as he grows older. We praise him when he's good, but he gets a ton of negative feedback: “Don't do this… don't do that, etc… you need to go to your room for hitting your sister"… I constantly feel like I have to micromanage him. But he knows he's in time-out or in his room a lot, and I do that so he can calm down or to protect his siblings. Any advice would be helpful.”


 
Unfortunately, for some teens on the autism spectrum, aggression may become quite common when reaching adolescence, and this may be clearly influenced by the parenting styles of the teen's mother and father. In fact, one of the key factors in determining an ASD youngster's tendency to develop aggression later in life may involve the presence of a maternally sensitive woman who can also balance the discipline and aggression in life.

In many of today's American families, it is not uncommon to find that both the mother and father are relatively absent from the youngster's life (e.g., due to work-related issues). Because a youngster's mental health is often greatly influenced by (a) the presence of maternal nurturing and (b) the balance of a father's discipline, when either of these are absent in the life of a youngster on the autism spectrum, confusion abounds and aggression usually develops. If you are the parent of a teenager on the spectrum, it is important to provide this balance to your child-rearing efforts. 
 
 


 
If you are a single mother, and your child's father is not present, you can expect your youngster's aggression will undoubtedly be present as you provide the maternal sensitivity your youngster needs while also attempting to be the disciplinarian. 
 
Because ASD kids have trouble differentiating social cues, and are confused by discipline when expressed by their mother, the authoritarian type of parenting is often met with aggression. For this reason, having a male role model (e.g., uncle, grandfather) who can provide that discipline while you provide the maternal sensitivity will go a long way in your youngster's long-term development.

Conversely, if you are a father who is raising a child alone, you will want to be sure that you find ways to be sensitive and nurturing to your youngster's needs. Because fathers are more likely to be the authoritarian, a woman's sensitivity will be important in your youngster's mental health. Often, this role can be filled by a woman who is an aunt or grandmother, and does not necessarily mean that a step-mother has to be in the picture.

ASD is a developmental disorder that affects many kids by resulting in abnormal social development. For parents, offsetting the risk for development of aggression is most likely achieved by first identifying your parenting style - as either disciplinarian or nurturing - and then finding someone who can fulfill the role as the opposite parenting style. 
 
Trying to manage both the motherly role and the fatherly role often leads to confusion in the youngster, which may exacerbate Autism-related complications in adolescence. Of course, it is not always possible to find a co-parent, but the ideal scenario would involve such an individual.


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

==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism

Caring For Your Aspergers Child Throughout The Lifespan

"I’m feeling very weighed down right now because my son was just diagnosed with Asperger’s, and I’m a single mom with two other children. What can I do to help my son now – and as he grows older?"

After a youngster is diagnosed with Aspergers or High-Functioning Autism, the parent may feel unprepared or unable to provide the youngster with the necessary care and education. Know that there are many treatment options, social services and programs, and other resources that can help.



Some tips that can help you and your son are:
  • Contact your local health department or autism advocacy groups to learn about the special programs available in your state and local community.
  • Keep a record of conversations, meetings with health care providers and educators, and other sources of information. This will help you remember the different treatment options and decide which would help your youngster most.
  • Keep a record of the doctors' reports and your youngster's evaluation. This information may help your youngster qualify for special programs.
  • Talk with your youngster's doctor, school system, or autism support groups to find an autism expert in your area who can help you develop an intervention plan and find other local resources.

Understanding Adolescents with Aspergers—

The adolescent years can be a time of stress and confusion for any growing youngster, including adolescents with Aspergers and High-Functioning Autism.

During the adolescent years, young people become more aware of others and their relationships with them. While most adolescents are concerned with acne, popularity, grades, and dates, adolescents with Aspergers may become painfully aware that they are different from their friends. For some, this awareness may encourage them to learn new behaviors and try to improve their social skills. For others, hurt feelings and problems connecting with others may lead to depression, anxiety, or other mental disorders.

One way that some adolescents with Aspergers may express the tension and confusion that can occur during adolescence is through increased autistic or aggressive behavior. Teenagers with Aspergers will also need support to help them understand the physical changes and sexual maturation they experience during adolescence.

If your adolescent seems to have trouble coping, talk with his doctor about possible co-occurring mental disorders and what you can do. Behavioral therapies and medications often help.

Preparing for Transition to Adulthood—

The public schools' responsibility for providing services ends when a youngster with Aspergers reaches the age of 22. At that time, some families may struggle to find jobs to match their adult son’s or daughter’s needs. If your family cannot continue caring for an adult child at home, you may need to look for other living arrangements.

Long before your youngster finishes school, you should search for the best programs and facilities for young people with Aspergers. If you know other moms and dads of adults with Aspergers, ask them about the services available in your community. Local support and advocacy groups may be able to help you find programs and services that your youngster is eligible to receive as an adult.

Another important part of this transition is teaching young people with Aspergers to self-advocate (i.e., that they start to take on more responsibility for their education, employment, health care, and living arrangements). Grown-ups with Aspergers must self-advocate for their rights under the Americans with Disabilities Act at work, in higher education, in the community, and elsewhere.

Living Arrangements for Aspergers Adults—

There are many options for grown-ups living with Aspergers. Helping your son or daughter choose the right one will largely depend on what is available in your state and local community, as well as his/her skills and symptoms. Below are some examples of living arrangements you may want to consider:

1. Some individuals with special needs may choose to live in group homes or apartments staffed by professionals who help with basic needs. These needs often include meal preparation, housekeeping, and personal care. Individuals who are more independent may be able to live in a home or apartment where staff only visits a few times a week. Such residents generally prepare their own meals, go to work, and conduct other daily activities on their own.

2. Some families open their homes to provide long-term care to grown-ups with special needs who are not related to them. If the home teaches self-care and housekeeping skills and arranges leisure activities, it is called a "skill-development" home.

3. Long-term care facilities are available for those with low-functioning Autism who need intensive, constant supervision.

4. Government funds are available for families who choose to have their son or daughter with Aspergers live at home. These programs include Supplemental Security Income, Social Security Disability Insurance, and Medicaid waivers. Information about these programs and others is available from the Social Security Administration (SSA). Make an appointment with your local SSA office to find out which programs would be right for your “Aspie.”

5. Most grown-ups with Aspergers are able to live on their own. Others can live in their own home or apartment if they get help dealing with major issues (e.g., managing personal finances, obtaining necessary health care, interacting with government or social service agencies, etc.). Family members, professional agencies, or other types of providers can offer this assistance.

Explaining Autism Spectrum Disorder to Your Child

Moms and dads go through a range of emotions when given their youngster’s diagnosis of Aspergers or High-Functioning Autism (HFA). Often times, brothers and sisters, grandmothers and grandfathers, and other family members go through a variety of emotions and stages of dealing with an Aspergers family member as well.

Professionals agree that the Aspergers or HFA youngster should be given information about his diagnosis, as well as support for understanding and coping with the new information. However, many moms and dads may fear a number of things if they tell their affected child – or other kids (and sometimes other family members) about their youngster’s disorder. For example, they may fear that:
  • the youngster (or others) will use the disorder as an excuse for why she can’t do something
  • the youngster will think of himself (or others will think of the youngster) as a complete failure with no hope for a positive future
  • their youngster may lose some of her options in life
  • their youngster will become angry or depressed because he has a disorder
  • their youngster will not understand

These issues may or may not occur, but can be dealt with if needed. Some of these issues may surface whether or not the youngster and others are told of the diagnosis. In any event, all involved – including the Aspergers or HFA child – should have important information about the disorder since the diagnosis will affect various aspects of his life.



The possibility of unwanted issues occurring is more likely when the child – and other family members – are not told about the disorder and given the support they need. Consider the stories told by many people on the autism spectrum who were not told – or not diagnosed – until they were grown-ups. Misunderstanding others and having poor social skills leads to poor interactions with others and results in ridicule and isolation. Being told, “You should know better than that” or “stop being so rude to people” – and not having a clue what they did or how to “fix” or change the situation – all lead to disappointment and bewilderment.

Many people who didn’t know they had the disorder until they were adults (either because their parents didn’t know, or withheld information) have self-disclosed that, as children, they were seen as a major disappointment and failure to their families and others, but had no clue why they failed or how to do better. Over time, the end result was low self-esteem and isolation. Many of these adults now feel that if they had received the correct information about their diagnosis and what their differences were as children, they would have had a better chance of being more successful in multiple areas today.

Your youngster may know that he’s different, but he may come to the wrong conclusions about his perceived differences if you, the parent, leave him in the dark about his diagnosis. He may even wonder if he has a terminal illness and is going to die. He sees doctors and therapists and goes for treatments – but is not told why. Even the youngster who doesn’t ask or verbally express concern about being different may still be thinking some of these thoughts. Even kids with Aspergers and HFA can sense the frustration and confusion of others, and as a result, they may come to the wrong conclusions about the cause of the turmoil around them.

It is the parents’ decision whether they share information about the diagnosis with their youngster. It can seem like an overwhelming task, especially when day-to-day issues consume all the time and energy of a family. It may be helpful to discuss your concerns and possible options for disclosure with others that know your youngster well, other moms and dads of kids on the spectrum, and even people with Aspergers and High-Functioning Autism who have been told about their diagnosis.

There is no exact age or time that is correct to tell a youngster about her diagnosis. Her personality, abilities and social awareness are all factors to consider in determining when she is ready for information about her diagnosis. Starting too early can cause confusion. If older when told, she may be extremely sensitive to any suggestion that she is different. You can look for the presence of certain signs that a youngster is ready for information. Some kids will actually ask, “Is there something wrong with me?” or “Why can’t I be like my friends?” These types of questions are a clear indication that your child needs some information about her diagnosis. Some Aspergers kids may have similar thoughts, but may not be able to express them.

Some kids don’t get a diagnosis until they are in adolescence. Frequently, those who are diagnosed later have had some bad experiences that can influence the decision of when to share information with them about their diagnosis. They may not be emotionally ready to cope with the new information because of the toll the bad experiences have taken on their sense of self-worth. They may be very sensitive to any information that suggests that they are “weird.” Thus, they are not ready for any diagnostic information. On the other hand, an older teen may already know about a previous diagnosis (e.g., Attention Deficit Disorder, Oppositional Defiant Disorder, etc.). Because of this history with another label, it may be an appropriate time to share the diagnosis and some concrete information about ASD.

Many parents have found that setting a positive tone about the child’s “uniqueness” is a great place to start. Everyone is unique with their own likes and dislikes, strengths and weaknesses, and physical characteristics. One of my favorite lines is, “God made us all different because he knew it would be too boring if we were all the same.” Differences can be discussed in a ‘matter of fact’ manner as soon as the youngster understands simple concrete examples of differences. With this approach, it is more likely that differences – whatever they are – can be a neutral or even fun concept. Matter of fact statements like, “Daddy has glasses and mommy doesn’t” or “Michael likes to ride his bike and you like to play computer games” are examples. The ongoing use of positive concrete examples of differences among familiar people can make it easier to talk to your son or daughter about other contrasts related to his/her diagnosis.

Many adults of the spectrum assert the view that kids should be given some information before they hear it from someone else or overhear or see information that they sense is about them. An Aspergers youngster may have the view that people don’t like him or that he is always in trouble, but doesn’t know why. If given a choice, waiting until a negative experience occurs to share the information is probably not a good idea.

It is important that the process of explaining the disorder to a youngster is individualized and meaningful. It can be hard to decide what and how much information to begin with. If your son or daughter has asked questions, this gives you a place to start. But make sure you understand what he/she is asking. Recall that it is easy to misinterpret the meaning of his/her words. For those kids who have a keen interest in their diagnosis (and whose reading ability is good), there are many books written by autistic kids that may be of interest. There are also many more books written by adults on the spectrum. These authors are reaching out to others with a diagnosis by sharing experiences, tips on life’s lessons, and helping readers feel that they are not alone in this journey.

To make your discussion meaningful, you can begin by talking about any questions that your child has asked. You may want to write down key points and tell her that others with this diagnosis also have some of the same questions and experiences. Then you could ask if she would like to find more information by reading books, watching videos, or by talking with other people. If asking your youngster if she wants information is likely to get a “no” response, you may choose to not ask, but tell her that you will be looking for information and would like to share it with her. Let her know that she can ask any questions she wants to – at any time.

When people with Aspergers and High-Functioning Autism have an opportunity to meet others with the diagnosis, they often find it is an eye-opening and rewarding experience. People with the disorder can sometimes better understand themselves - and the world - by interacting with others on the spectrum. Interacting with others on the spectrum can help your child realize that there are others that experience the world the same way he does, and that he is not the only one who is “different” (which makes the disorder not so different after all).

For many parents, using a therapist to begin the disclosure process may be helpful. Having a therapist involved, at least in the beginning stages of disclosure, leaves the role of support and comfort to the parents and those closest to the Aspergers or HFA youngster. For a child with the disorder, it can be especially hard to seek comfort from someone who gives you news that can be troubling and confusing. Having a therapist whose role is to discuss information about the youngster’s diagnosis and how the disorder is affecting his life can make it easier for parents to be seen by the youngster as supportive. The therapist discussing information with the youngster about his disorder can also help moms and dads to understand the youngster’s reaction and provide suggestions for supporting him. Having a therapist involved also allows the use of a location outside of the family home for beginning this process.

Explaining ASD to a child can’t be done in one or two conversations. The child needs time to assimilate the new information about herself at her own pace. It will likely take several weeks before the youngster initiates comments or asks questions about the new information. The process of explaining the disorder is ongoing. Making the information meaningful from the youngster’s point of view will greatly augment the learning process. Also, a positive “spin” on the condition helps maintain self-esteem and a productive atmosphere for learning.

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.

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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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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.

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