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Raising Kids with Autism Spectrum Disorder: Parents' Grief and Guilt


Some parents grieve for the loss of the youngster they imagined they had. Moms and dads have their own particular way of dealing with the situation based on a number of factors (e.g., their personality style, life experiences and support systems, among others).

Clearly there are a range of stages and coping techniques, such as denial, depression, anger and rationalization. Most families recognize, at least at some level, that there is something significantly wrong with their "special needs" youngster. To at last be given a name for it (i.e., ASD level 1,  or High-Functioning Autism) can be a relief.

Certainly, having a clearer understanding of what is wrong affords the opportunity to obtain appropriate services, as well as to begin to think about the youngster in a different, and hopefully more helpful way.

Grief—

The grief surrounding the diagnosis of an Autism Spectrum Disorder (ASD) is compounded by tremendous confusion and uncertainty. Many moms and dads have little understanding of what the diagnosis entails. Many have the inaccurate perception that all kids with ASD are non-verbal, mentally retarded, extremely remote and possibly self-abusive. Parents must become informed about the varied presentations of ASD. This spectrum is a long one with extremely impaired individuals at one end, but highly capable ones on the other.

While the continuum is long, the potential of any particular youngster is unclear. The course of the disorder is extremely hard to predict at an early age. Some very impaired looking toddlers go on to become high functioning adults, including adults with Asperger's. As one parent said, “The problem is we don’t know if he is going to become a rocket scientist or work in a sheltered workshop.”

After learning of the diagnosis on an autism spectrum disorder, the family is forced not only to come to terms with what may be a devastating handicap, but is thrust almost immediately into making many critically important decisions. To champion the youngster’s cause at the same time one must begin to grieve is truly an untenable position. 

It is as if one must – overnight – and while grieving – become an expert in ASD and its treatment, despite tremendously conflicting opinions. There is considerable support to the notion that the availability of early, intensive intervention offers the best hope for improvement. While this hope leads to a sense of optimism, the message that services must be implemented immediately and intensively can also feel overwhelming.

In addition to decisions about what kind of schooling their youngster should have, moms and dads must also make decisions about such treatments and services as speech therapy and occupational therapy. What about sensory integration? Auditory retraining? Facilitated communication? Medication? Behavior modification? Many times the approaches seem confusing and even contradictory, with proponents claiming success and even cures. How is a parent, especially one in the midst of grieving, and of desperately hoping for help, supposed to make informed, intelligent choices?

The grief work in the families of kids with an ASD is an ongoing process. In most families, there are periods of greater and lesser intensity to the grieving. This intensity may partly relate to developmental issues in the youngster. For example, birthdays or other rites of passage (e.g. Bar Mitzvahs, graduations, etc.) may underscore how different the youngster is from his typical peers. Grief intensity may also relate to more personal, individual factors. These factors include such things as one’s own temperament, history, supports and losses.

In addition to the waxing and waning in the intensity of grief, there is typically an alternation of hope and despair. Each new treatment or program for the youngster is often accompanied by an increase in optimism in the parents. If the new treatment or program is deemed unsuccessful, despair may follow, only to be replaced by hope once again, when a new plan is implemented.

Feelings of jealousy and anger are common in many families. These feelings may be directed towards other families who do not have to contend with such stresses or towards other families with disabled kids whose kids are higher functioning or have improved to a greater extent. Many families also experience feelings of anger and frustration towards professionals for a variety of reasons. These reasons include not diagnosing properly, insensitivity, offering false hope or providing inadequate or ineffective treatments or services.

One variant of grief that sometimes occurs in the families of higher functioning kids, particularly those with Autism, is the sense that the youngster “should” be doing better than he is because he is so bright. There may be feelings of frustration that “normalcy” is so close, yet still out of reach. For some of these kids and their families, graduation from high school is a particularly stressful time. For the parents, there may be the sadness that their youngster is not yet able to be independent the way their typically developing peers are. Finding work is often challenging for those on the autism spectrum, and support services are usually quite limited for this population.

Guilt—

Guilt is another common reaction to the diagnosis of ASD in a youngster. Fortunately, the medical and professional community no longer hold to the notion that autism is a result of parental failing. Today, there is widespread acceptance of the fact that ASD is a genetically based disorder. The possible contribution of additional factors, such as environmental toxins, is currently being studied.

This change in perspective, from parental failing to genetic loading, has not eradicated parental guilt, although in most cases it has lessened it. Many moms and dads wonder what they unwittingly did to contribute to their youngster's disorder. Were they exposed to too much mercury from injections or dental fillings? Was the termite control treatment of their house the culprit?

There have been articles in the press on the high incidence of ASD in Silicon Valley. Time Magazine entitled the phenomenon the "Geek Syndrome" in the article "The Secrets of Autism". This term has led some to speculate that the blame has shifted from “refrigerator mothers” to “geek fathers.” Said differently, believing genetics is the cause does not necessarily eradicate the guilt parents feel. Unfortunately, in some cases, it seems to confirm their fears about having caused or contributed to their youngster’s disability.


By

ASD Meltdown-Management: Key Points for Parents of Kids on the Autism Spectrum

A meltdown is a condition where the youngster with ASD level 1, or High Functioning Autism, temporarily loses control due to emotional responses to environmental factors. It generally appears that the youngster has lost control over a single and specific issue, however this is very rarely the case. 

Usually, the problem is the accumulation of a number of irritations which could span a fairly long period of time, particularly given the strong long-term memory abilities of young people on the autism spectrum.

Why The Problems Seem Hidden—

ASD kids don't tend to give a lot of clues that they are very irritated:
  • Often ASD child-grievances are aired as part of their normal conversation and may even be interpreted by NTs (i.e., neurotypicals, or people without autism) as part of their standard whining.
  • Some things which annoy ASD kids would not be considered annoying to NTs, and this makes NT's less likely to pick up on a potential problem.
  • Their facial expressions very often will not convey the irritation.
  • Their vocal tones will often remain flat even when they are fairly annoyed.

What Happens During A Meltdown—

The meltdown appears to most people as a temper tantrum. There are marked differences between adults and kids. Kids tend to flop onto the ground and shout, scream or cry. Quite often, they will display violent behavior such as hitting or kicking.

In adults, due to social pressures, violent behavior in public is less common. Shouting outbursts or emotional displays can occur though. More often, it leads to depression and the ASD man or woman simply retreats into themselves and abandons social contact.

Some ASD kids describe the meltdown as a red or grey band across the eyes. There is a loss of control and a feeling of being a powerless observer outside the body. This can be dangerous as the ASD youngster may strike out, particularly if the instigator is nearby or if the "Aspie" is taunted during a meltdown.

Depression—

Sometimes, depression is the only outward visible sign of a meltdown. At other times, depression results when the ASD youngster leaves the meltdown state and confronts the results of the meltdown. The depression is a result of guilt over abusive, shouting or violent behavior.

Dealing With Meltdowns—

Unfortunately, there's not a lot you can do when a meltdown occurs in a child on the autism spectrum. The best thing you can do is to train yourself to recognize a meltdown before it happens and take steps to avoid it.

Example from one mother: "ASD kids are quite possessive about their food, and my autistic child will sometimes decide that he does not want his meat to be cut up for him. When this happens, taking his plate from him and cutting his meat could cause a full-blown meltdown. The best way to deal with this is to avoid touching it for the first part of the meal until he starts to want my involvement. When this occurs, instead of taking his plate from him, it is more effective to lean over and help him to cut the first piece. Once he has cut the first piece with help, he will often allow the remaining pieces to be cut for him."

Once the youngster reaches an age where they can understand (around age 4 or so), you can work on explaining the situation. One way you could do this would be to discreetly videotape a meltdown and allow them to watch it at a later date. You could then discuss the incident, explain why it isn't socially acceptable, and give them some alternatives.

One adult "Aspie" stated the following:

"When I was little, I remember that the single best motivation for keeping control was once when my mother called me in after play and talked about the day. In particular, she highlighted an incident where I had fallen down and hurt myself. She said, 'Did you see how your friend started to go home as soon as you fell down because they were scared that you were going to have a meltdown?' She went on to say, 'When you got up and laughed, they were so happy that they came racing back. I'm proud of you for controlling your emotions.' That was a good moment for me that day. It really gave me some insight into how I tended to respond quickly without much forethought. I carried this with me for years later and would always strive to contain myself. I wouldn't always succeed, but at least I was trying."

Meltdowns And Punishment—

One of the most important things to realize is that meltdowns are part of the ASD condition. You can't avoid them; merely try to reduce the damage. Punishing an ASD youngster for a meltdown is like punishing someone for swearing when they hit their thumb with a hammer. It won't do any good whatsoever and can only serve to increase the distance between you and your youngster.

In addition, meltdowns aren't wholly caused by the current scenario, but are usually the result of an overwhelming number of other issues. The one which "causes" the meltdown is the straw that breaks the camel’s back. Unless you're a mind reader, you won't necessarily know what the other factors are, and your ASD youngster may not be able to fully communicate the problem.

Every teacher of ASD students and every mom or dad of an ASD child can expect to witness some meltdowns. On average, meltdowns are equally common in boys and girls, and more than half of autistic kids will have one or more per week.

At home, there are predictable situations that can be expected to trigger meltdowns, for example:
  • bath time
  • bedtime
  • car rides
  • dinner time
  • family activities involving siblings
  • family visiting another house
  • getting dressed
  • getting up
  • interactions with peers
  • mom or dad talking on the phone
  • playtime
  • public places
  • visitors at the house
  • watching TV

Other settings include:
  • answering questions in class
  • directives from the teacher
  • getting ready to work
  • group activities
  • individual seat work
  • interactions with other children
  • on the school bus
  • the playground
  • transitions between activities

From time to time, all ASD kids will whine, complain, resist, cling, argue, hit, shout, run, and defy authority figures. Meltdowns, although normal, can become upsetting to parents and teachers because they are embarrassing, challenging, and difficult to manage. Also, meltdowns can become particularly difficult to manage when they occur with greater frequency, intensity, and duration than is typical for the age of the ASD kid.

There are nine different types of temperaments in kids on the spectrum:

1. Distracted temperament predisposes the kid to pay more attention to his or her surroundings than to the caregiver.

2. High-intensity level temperament moves the kid to yell, scream, or hit hard when feeling threatened.

3. Hyperactive temperament predisposes the kid to respond with fine- or gross-motor activity.

4. Initial withdrawal temperament is found when kids get clingy, shy, and unresponsive in new situations and around unfamiliar people.

5. Irregular temperament moves the kid to escape the source of stress by needing to eat, drink, sleep, or use the bathroom at irregular times when he or she does not really have the need.

6. Low sensory threshold temperament is evident when the kid complains about tight clothes and people staring and refuses to be touched by others.

7. Negative mood temperament is found when kids appear lethargic, sad and lack the energy to perform a task.

8. Negative persistent temperament is seen when the kid seems stuck in his or her whining and complaining.

9. Poor adaptability temperament shows itself when kids resist, shut down, and become passive-aggressive when asked to change activities.

Around age 2, some ASD kids will start having what I refer to as "normal meltdowns." These bouts can last until approximately age 4. Some parents (thinking in terms of temper tantrums) mistakenly call this stage "the terrible twos," and others call it "first adolescence" because the struggle for independence is similar to what is seen during adolescence. Regardless of what the stage is called, there is a normal developmental course for meltdowns in children on the autism spectrum.

Children on the spectrum  during this stage will test the limits. They want to see how far they can go before mom or dad stops their behavior. At age 2, ASD kids are very egocentric and can't see another person’s point of view. They want independence and self-control to explore their environment. When they can't reach a goal, they show frustration by crying, arguing, yelling, or hitting. When their need for independence collides with the parents' needs for safety and conformity, the conditions are perfect for a power struggle and a meltdown. 

A meltdown is designed to get the parents to desist in their demands or give the child what he or she wants. Many times, ASD kids stop the meltdown only when they get what is desired. What is most upsetting to parents is that it is virtually impossible to reason with ASD kids who are having a meltdown. Arguing and cajoling in response to a meltdown only escalates the problem.

By age 3, many young people on the spectrum are less impulsive and can use language to express their needs. Meltdowns at this age are often less frequent and less severe. Nevertheless, some preschoolers have learned that a meltdown is a good way to get what they want.

By age 4, most ASD kids have the necessary motor and physical skills to meet many of their own needs without relying so much on the parent. At this age, these young people also have better language that allows them to express their anger and to problem-solve and compromise. Despite these improved skills, even kindergarten-age and school-age ASD kids can still have meltdowns when they are faced with demanding academic tasks and new interpersonal situations in school.

It is much easier to “prevent” meltdowns than it is to manage them once they have erupted.  Here are some tips for preventing meltdowns and some things you can say:

1. Avoid boredom. Say, “You have been working for a long time. Let’s take a break and do something fun.”

2. Change environments, thus removing the child from the source of the meltdown. Say, “Let’s go for a walk.”

3. Choose your battles. Teach them how to make a request without a meltdown and then honor the request. Say, “Try asking for that toy nicely and I’ll get it for you.”

4. Create a safe environment that these children can explore without getting into trouble. Childproof your home or classroom so they can explore safely.

5. Distract them by redirection to another activity when they meltdown over something they should not do or can't have. Say, “Let’s read a book together.”

6. Do not "ask" ASD kids to do something when they must do what you ask. Do not ask, “Would you like to eat now?” Say, “It's dinnertime now.”

7. Establish routines and traditions that add structure. For teachers, start class with a sharing time and opportunity for interaction.

8. Give these children control over little things whenever possible by giving choices. A little bit of power given to the kid can stave-off the big power struggles later (e.g., “Which do you want to do first, brush your teeth or put on your pajamas?”).

9. Increase your tolerance level. Are you available to meet the ASD kid’s reasonable needs? Evaluate how many times you say, “No.” Avoid fighting over minor things.

10. Keep a sense of humor to divert the child's attention and surprise him or her out of the meltdown.

11. Keep off-limit objects out of sight and therefore out of mind. In an art activity, keep the scissors out of reach if the child is not ready to use them safely.

12. Make sure that ASD kids are well rested and fed in situations in which a meltdown is a likely possibility. Say, “Dinner is almost ready, here’s a cracker for now.”

13. Provide pre-academic, behavioral, and social challenges that are at the ASD kid’s developmental level so that he or she doesn't become frustrated.

14. Reward them for positive attention rather than negative attention. During situations when they are prone to meltdowns, catch them when they are being good and say things like, “Nice job sharing with your friend.”

15. Signal them before you reach the end of an activity so that they can get prepared for the transition. Say, “When the timer goes off 5 minutes from now, it will be time to turn off the TV and go to bed.”

16. When visiting new places or unfamiliar people, explain to the child beforehand what to expect. Say, “Stay with your assigned buddy in the museum.”

There are a number of ways to “handle” a meltdown that is already underway.  Strategies include the following:

1. Hold the ASD  kid who is out of control and is going to hurt himself or herself (or someone else). Let the child know that you will let him or her go as soon as he or she calms down. Reassure the child that everything will be all right, and help him or her calm down. Moms and dads may need to hug their Aspergers kid who is crying, and say they will always love him or her no matter what, but that the behavior has to change. This reassurance can be comforting for an Aspergers kid who may be afraid because he or she lost control.

2. If the youngster has escalated the meltdown to the point where you are not able to intervene in the ways described above, then you may need to direct the child to time-out. If you are in a public place, carry your child outside or to the car. Tell him that you will go home unless he calms down. In school, warn the student up to three times that it is necessary to calm down, and give a reminder of the rule. If the student refuses to comply, then place him in time-out for no more than 1 minute for each year of age.

3. Remain calm and do not argue. Before you manage her, you must manage your own behavior. Punishing or yelling at the child during a meltdown will make it worse.

4. Talk with the child after he has calmed down. When he stops crying, talk about the frustration the he has experienced. Try to help solve the problem if possible. For the future, teach the child new skills to help avoid meltdowns (e.g., how to ask appropriately for help, how to signal an adult that he  needs to go to “time away” to “stop, think, and make a plan” ...and so on). Teach the Aspergers kid how to try a more successful way of interacting with a peer or sibling, how to express his feelings with words, and recognize the feelings of others without hitting and screaming.

5. Think before you act. Count to 10 and then think about the source of the ASD kid’s frustration, the child’s characteristic temperamental response to stress (e.g., hyperactivity, distractibility, moodiness, etc.), and the predictable steps in the escalation of the meltdown.

6. Try to intervene before the youngster is out of control. Get down at her eye level and say, “You are starting to get revved up, let's slow down.” Now you have several choices of intervention.

7. You can ignore the meltdown if it is being thrown to get your attention. Once the ASD kid calms down, you can give the attention that is desired.

8. You can place the youngster in "time away." Time away is a quiet place where he goes to calm down, think about what he needs to do, and with your help, make a plan to change the behavior.

9. You can positively distract the child by getting her focused on something else that is an acceptable activity (e.g., remove the unsafe item and replace with an age-appropriate game).

Post-Meltdown Management—

1. Do not reward the child after a meltdown for calming down. Some kids will learn that a meltdown is a good way to get a treat later.

2. Explain to the child that there are better ways to get what she wants.

3. Never let the meltdown interfere with your otherwise positive relationship with your child.

4. Never, under any circumstances, give in to a meltdown. That response will only increase the number and frequency of the meltdowns.

5. Teach the youngster that anger is a feeling that we all have, and then teach her ways to express anger constructively.


Best Comment—

My name is Sharon, I have been with Elliott for over ten years and we have a son Brandon who is 6 yr old. They both have aspergers syndrome we are awaiting Brandon’s appointment with the paediatrician consultant for diagnosis, but I am 110% sure it will be aspergers. I am feeling in the thick of it of late I have and am constantly looking for local support and forums online etc to reach out for guidance and any support also to offer my own support to others. I am a person centred therapist and in the past have worked in supporting children and adults on the autistic spectrum, I do have a good insight into the autistic spectrum but nothing prepares you for how it feels actually living 24/7 with it.

Firstly the biggest part for me is the heart break and hurt I feel for my son, then the worry and concern how he will get along in life. I am very pro active and of late have worked well with school to best advise them how we support Brandon’s needs it’s been an uphill struggle for the last year especially as they don't seem to have the knowledge or the amenities to support him.

I have been called to school several times of late because of his "disruptive" behaviour,, basically his stimming he does get louder if in a louder environment the teachers know this is a trigger and he is left alone to deal with this instead of being prepared for a change of noise or scenery or even a much needed teaching assistant who could work alongside him. If he gets too disruptive he is taken out of the class environment for "time out" is this a good way of dealing with it? As we have told school time out at home is if he is naughty, which generally he is never naughty. we have what we call quiet time at home where sometimes when he feels over load we just find a quiet place to sit together and relax or read whatever he wants really but it brings him down and more settled to cope better.

Again it will mean another meeting or ten..... To resolve or make a better learning environment for Brandon. They say they can’t do anything till he’s been statemented and funded for an assistant or further support. But they will assist him as best they can and I do feel listened to but there is of late something new nearly every day that needs adaption which imp fine with I am aware he defiantly needs some support. I have been on an emotional roller coaster.

It feels so isolating as support around this neck of woods is minimal. Brandon’s upset of late is his lack of friends he just wants his family to be at school all day every day his words because we love him! So the social aspect this is. So I discussed with head teacher and she has set a buddy system up for him its yet to be seen to be working, as I know how difficult it is for Brandon to mix and communicate with his peers and when he does he gets rejected.

We have tried so many routes with this he seems to connect with kids in play areas as he and they are generally being quite boisterous but its time limited so he feels less pressure. We are also in process of groups i.e. dancing as he loves to dance (street dance) and maybe other recreations of his choice. It feels like a very long a winding road what we are on I know I haven't spoke much bout Elliott having spent ten years with him would have thought Brandon’s aspergers may come easier to me understanding wise yes but on a personal level it’s so upsetting.

Other points are his eating habits he is a very bland eater and eats the same few foods we supplement with vitamins he is quite small in frame but eats quite well the foods he does enjoy think they call it the beige diet he has no colour in his food at all (pasta, no sauce, chicken nuggets, crisps plain flavour, crumpets, bread, some types of rice, certain chocolate, milk, Yorkshire puddings) there’s a few more but as you can see limited. We have tried so many different ways to entice him I would be grateful if you could give me any tips.

Feels like I am going on now, the list goes on his sensory issues really do dictate to him and us how the day goes sometimes, and he is becoming more and more aware of his stims and repetitive behaviour today its clapping and repeating words it was a machine gun noise (constantly)and random moves it varies from day. I feel I need more guidance in how to help/support Brandon. The melt downs are becoming more and more but he only does this with his dad I have a calming effect as soon as he starts in melt down they pretty much calm after I’ve been around him a few minutes. The routines he has etc seem to help a lot too.

If you can pull anything out of this letter and feedback I would be grateful there will be things I have missed but feel free to ask me any further questions. He also as 3 older step siblings 15, 19, 21 and they are very loving and supportive with him and very understanding. He as a great relationship with all of us in our family unit. Feels like the outside world is a daunting prospect right now.

More comments below...
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Is it ASD, ADHD, or Both?

"My 6-year-old son was diagnosed with ADHD at age 5. But now we are seeing signs that he may have 'high functioning' autism. What percentage of ADHD children also have autism? Is a dual diagnosis common?"

Most kids with ASD level 1 (high functioning autism) don’t receive that diagnosis until after age 6. Usually, they are diagnosed with ADHD as toddlers. Part of the reason is that physicians routinely screen kids for ADHD but not for autism. 
 
Another reason is that an ASD child's social impairment becomes more evident once he starts school. Finally, physicians are reluctant to label a youngster "autistic." It is okay - and even a badge of honor - to have a hyperactive youngster, but it is another thing entirely to have an autistic youngster.

Physicians make their diagnoses based on the youngster’s behaviors. Since kids with ADHD and ASD share similar behaviors, the two can appear to overlap. However, there is a fundamental difference between the two. For example:
  • An autistic child can appear unfocused, forgetful and disorganized like a youngster with ADHD, but there is a difference. The ADD youngster is easily distracted. The ASD child has no "filter."
  • Autistic children don’t understand that relationships are two-sided. If an ASD child talks on and on in an unmodulated voice about his particular interest, he simply does not understand that he is boring his friend and showing disinterest in his friend's side of the conversation. On the other hand, the youngster with ADHD can’t control himself from dominating the conversation.
  • Autistic children lack what physicians call "social reciprocity" or Theory of Mind. Theory of Mind is "the capacity to understand that other people have thoughts, feelings, motivations and desires that are different from our own." Kids with ADHD have a Theory of Mind and understand other people's motives and expectations. They make appropriate eye contact and understand social cues, body language and hidden agendas in social interactions. ASD children can’t.
  • Autistic children tend to get anxious and stuck about small things and can’t see the "big picture." Kids with ADHD are not detailed-oriented.
  • Both have social difficulties, but for different reasons.
  • Both kinds of kids can tantrum, talk too loud and too much and have problems modulating their behaviors and making friends.
  • If the unfocused autistic child is "nowhere," the obsessive-compulsive and "fantasy" autistic  child is somewhere else. "Fantasy children" retreat into a world of their own making - a world where everything goes the way they want it to. They play video games for hours or retreat into books and music. Their daydreaming and fantasizing resembles the behaviors of non-hyperactive kids with ADHD.
  • Kids with ADHD respond to behavioral modification. With ASD, the disorder is the behavior.
  • Obsessive-compulsive ASD children live a world they create from rules and rituals. Like ADHD kids, they appear preoccupied and distracted, but for different reasons. They appear distracted because they are always thinking about their "rules” (e.g., Did I tie my shoelaces right? Did I brush my teeth for 120 seconds?).
  • The ADHD youngster understands the rules but lacks the self-control to follow them. The autistic child does not understand the rules.
  • The autistic child views everything in her environment as equally important. Her teacher's dangling earring is as important as what she writes on the blackboard. The ASD child does not understand that she does not have to memorize the entire textbook for the next test. She does not "get" such rules.
  • The youngster with ADHD knows what to do, but forgets to do it. ASD children don’t know what to do.

Some researchers estimate that 60% to 70% of ASD-Level 1 children also have ADHD, which they consider a common comorbidity of ASD. Other researchers say that the two can’t exist together. Still others insist physicians have it all wrong and that the two disorders are the same.

The real problem is that there is no hard science. No one knows exactly how slight imperfections in brain structure and chemistry cause such problems. For this reason, getting the right diagnosis for a youngster who exhibits behavior problems may take years of trial and error. Diagnosis is based on observation of behaviors that are similar for a myriad of disorders. 

The tragedy is that the youngster often does not receive the correct medications, educational strategies, and behavioral modification techniques that could help him function on a higher level. He falls farther behind his peer group and loses ground when he could be getting appropriate treatments.


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

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

•    Anonymous said… fabulous info! thank you....
•    Anonymous said… Great article, thanks!
•    Anonymous said… My son haznt got any speech delays but shows every sympton of aspie but they wont diagnose him they wana diagnose him wid adhd an attachment disorder cus he waz poorly when a babie im still thinkin aspergers thow
•    Anonymous said… My son is 11 and still officially 'undiagnosed'!!!
•    Anonymous said… my son was diagnosed smack bang on the age of 6 ... no speech delay for this man . cant shut him up since the age of one !!! but other things make sense now . hes nearly seven :)
•    Anonymous said… My son was diagnosed with autism at 3. He is now 11 and presents as a child with Aspergers but at 3 there was speech delay.
•    Anonymous said… My son was just diagnosed at 7... at three he was diagnosed with speech delay anxeity disorder and ocd....
•    Anonymous said… the doctor that diagnosed my daughter said the only difference between asperger's and high functioning autism is the speech delays in the early years 
•    Anonymous said... Adhd n add will never be on the spectrum. Add n adhd are commonly diagnosed with Aspergers because some of the "symptoms" are in both. Sensory issues are in almost every child with an ASD.
•    Anonymous said... I have 2 with adhd and one with asd. While a few of the symptoms are the same, and a child can have both, I could not imagine add or adhd being on the spectrum in any way ever.
•    Anonymous said... My son has asbergers adhd ocd and generalized anxiety disorder
•    Anonymous said... They are talking about putting ADD and ADHD on the spectrum, so your question is yes. Going to share your page.
•    Anonymous said... yes my son was diagnosed with adhd when he started school but he always had the aspergers tendencies. he has been re diagnosed as adhd-asd-aspergers syndrome.
•    Anonymous said… I agree. My 15 year old son was diagnosed with ADHD at 5 but wasn't given a formal diagnosis of Aspergers till he was 9. One of the reasons for the delay was other cases where the disability was evident took precedent. Unfortunately, in cases such as Autism or FASD where the disability is "invisible" or intangible, individuals are more often than not last priority in psychological assessments in school.
•    Anonymous said… I've had a lot of anger towards the specialists who were a part of diagnosing my son with ADHD when he was 5. I always knew it wasn't the answer, and sought help from different sources (pediatrician, school special education team, therapists...) only to feel like I was going crazy because I was the only one who didn't want to medicate him for ADD. Four (long and tough) years later, we're in the process of an autism assessment. The more I read about the spectrum, the more I feel that it's so blatantly obvious that autism symptoms are what have been ailing him and causing his issues at school for so long; and it has made me angry that those specialists (who should be familiar enough with those symptoms) didn't see it or suggest it 4 years ago. This article helped me come to peace with that a little bit. I still find it strange that doctors routinely screen for ADHD over autism, and I think it's because there is medication for ADHD, a quick fix, where ASD takes a lot more time/resources/intervention.
•    Anonymous said… Very common to have both diagnosis. Actually, having only Aspergers is more rare. Aspies usually have a second diagnosis of ADHD, depression, or OCD according to what I have read and seen. My son was diagnosed ADHD at 3 1/2. At that time he was also tested for ASD, but not diagnosed. Within 2 years, he had changed quite a bit, and it then became evident that he also had Aspergers.
•    Anonymous said… Yes, there can be a dual diagnoses. I have a triple one. In our case, it is all evident and true. Asperger's and ADHD. The third one is a attachment/ bonding disorder. All are clearly right on point 100%. Some do not like to diagnose so quick. It is a process that may require a couple of opinions.

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The Silent Bullying of Students with Autism Spectrum Disorder

“My ASD son (high functioning) continues to be bullied at school, but nobody there seems to take it seriously. His teach said that ‘he seems to start the arguments by annoying some of the other students.’ O.K. Fine. Maybe this is true, but that doesn’t justify bullying. How can I get the school to take this seriously?”

Under Section 504 of the Rehabilitation Act of 1973, disability harassment is against the law in all schools, school districts, and colleges and universities that receive public funds. “Special needs” kids who are bullied or harassed have legal rights to grievance procedures and due process on the local level. They can also file complaints with the Office of Civil Rights.

Nevertheless, in spite of all these laws and policies, the National Education Association estimates that every 7 minutes of every school day, a youngster is a victim of bullying, and 85% of the time there is no intervention by other children or grown-ups. Your youngster's school may have anti-bullying policies that do not help much on a practical level.

Kids in special education are the most frequent victims of bullies. Kids with ASD, or High-Functioning Autism (HFA), are inevitably victims of bullying. One expert puts the percentage at 100%. The reason is that HFA kids fit the profile of a typical victim (i.e., a "loner" who appears different from other kids). Like hungry wolves that attack a limping sheep that can't keep up with the herd, the boy or girl with clumsy body language and poor social skills appears vulnerable and ripe for bullying. What's worse is the youngster often suffers in silence and does not tell his mother or father about the torment.

Luke Jackson, a thirteen-year-old boy with ASD explained it like this: “Autistic kids don't realize which things they are supposed to go home and tell. ‘What have you done at school today?’ wouldn't automatically bring about the answer, ‘I have been bullied’ unless that subject was specifically brought up."

If your autistic youngster appears under extreme stress, if he is missing school because of headaches and stomachaches, if he has physical injuries and torn clothing, he may be a victim of bullying. If your youngster is stealing money from you, he may be using it to pay off a bully.

Once you determine that your youngster is a victim of bullying, you have to be careful not to make the situation worse. Writing in his book “Freaks, Geeks and Aspergers,” Luke describes what happened after his mom spoke up to his tormentors: “The bullies left me alone for sometime after that. But no amount of threatening by my brother, by the educators, fear of expulsion, pleasant reasoning, absolutely nothing made any difference and they never left me alone. In the end they were physically pushing me around and punching me and it was about the worst time of my entire life.”

Luke endured not only physical beatings, but also name-calling, teasing, tripping so his lunch tray fell all over, having his books destroyed and chairs pulled out from underneath him. He ended up changing schools.

One major problem that Luke's mother and other moms and dads of HFA kids face is that a school may have an anti-bullying policy, yet the staff looks the other way when it happens. Some school administrators are simply more tolerant of bullying than others. Some schools, including Columbine, tolerate a "pecking order" in which athletes and popular children have special privileges and develop a sense of entitlement that leads to a "bullying atmosphere." 
 
In such a school, if moms and dads report bullying, the principal may advise them to enroll their youngster in karate or otherwise teach him to stand up for himself. The underlying attitude is that it is the victim's fault. One principal told a mother of an autistic boy, "Your son is a little different and it bothers other kids, so he brings this on himself because of who he is." Also in such a school, educators and coaches may bully the “different” youngster too.

Another problem in approaching educators and school administrators is that an HFA youngster does not have the social savvy to tell his side of the story effectively. Bullies typically lack empathy and real feeling, but many are good at crying on cue and playing the victim. Often the autistic student gets expelled, and the bully receives no punishment unless the autistic student has an effective witness.

In a survey by York University, only 23% of children agreed with this statement: “educators usually - or almost always - intervene when bullies attack.” However, 71% of the educators in the survey agreed. Part of the problem is that educators do not witness most bullying, because it usually happens off campus (which also means the school may not be legally liable for it). AS HFA kids are most vulnerable when they walk alone to and from school. The other most likely times bullying occurs is during unstructured times (e.g., lunch hour, recess, passing between classes). Bullying peaks in junior high school.

There are things you can do to protect your youngster. It is a good idea to demand an anti-bullying clause in your youngster's Individual Education Plan (IEP). This is a proactive way of having solutions in place and holding the administration to its word in the event your youngster is bullied anytime throughout the year. If your school does not have an anti-bullying program, try to work through the PTO to get one in place. Some schools have a “bullying coordinator” (usually a volunteer) who monitors the lunchroom, restrooms, corridors and playgrounds, and makes sure there is consistent intervention.

If your youngster is a victim of bullying, don't approach the mom or dad of the bully – or the bully himself. According to the research, parents of bullies are often abusive people themselves. Talk to your youngster's teacher and principal in private. Ask for an adult aide to accompany your youngster at all times, if necessary. If the bullying does not stop, you can involve the police or file grievances through your local Office of Civil Rights. If your youngster is in danger, you can home-school him until the situation is under control or transfer him to a private school. If you have to file a lawsuit against the school and the mom and dad of the bully, find a lawyer whose expertise is in special education law.

P.S. Warning to parents: According to statistics, it is very likely that YOUR child with ASD HAS BEEN or IS BEING bullied. Why don’t you know about it? Because your child won’t tell you! Why won't he tell you? Because he thinks it's a normal, everyday activity that some peers engage in. So, you need to investigate this now – BEFORE your child has been tormented for weeks or months or years! If after your investigation, you discover there has been no bullying against your child, then thank God for it.
 COMMENTS:

o    Anonymous said… angry to hear on 2 levels. A.) Bullies are just slime of the earth. They are so distructive to kids, sometimes lifelong with their cruel words/actions. B.) The teacher is so cruel & ignorant to dismiss the bullying so callously! Go to the guidance office & request an IEP meeting. Seek a psychologist who specializes in autism and/or ASD. They will often attend your IEP meeting with you as a child advocate. Once you have an IEP you have more pull to get him removed from that class & to help him learn how to act in class. My daughter's school was great but some teachers not so much. My daughter used to disrupt class with excessive hand raising & calling out in class. Her teacher understood & would talk to her & remind her to wait her turn. She worked it in as an iep practice item. Don't stand for this, your are your son's only advocate. This helped my daughter tremendously! She is now in college. She struggles but she gets by due to confidence built in high school because of their support. You need them on your side and IEP is the start to that. I really wish you all luck
o    Anonymous said… Bullies should be stopped!
o    Anonymous said… Get an IEP, and then slam the school with it.
o    Anonymous said… Good luck! I did all if that too when my son was bullied. The teacher blamed him. The school refused to accommodate, help, or test him. I was treated poorly after my complaints. It took years to get the diagnosis, then they only did a 504 plan at an completely different school; I had to pull my son out of the first school. By then the damage was done. That was 3 years ago and my son STILL talks about that kid!
o    Anonymous said… Him starting the arguments is part of his condition which probably comes down to socializing skills. Bullying on the other hand is ILLEGAL, demand that they deal with the situation or you will through legal support.
o    Anonymous said… I just started home schooling my daughter! It has been so much less stressful.
o    Anonymous said… people need to be educated- i really had no clue about this condition until i watched the show parenthood. i have much respect for all you and shame on people did not give you that
o    Anonymous said… School was a huge challenge before our son got private care. I was looked down upon by teachers and staff, as they blamed his behaviors on my parenting. They do not understand the disorder and discipline the child for things beyond their control.
o    Anonymous said… Sounds so similar, we had that issue and were told our son was starting it, but what was happening was yes he would go and hit a child, to get put on the deck for the whole of lunchtime as no-one annoys you in time out. We were told our son would never be able to be in playground without supervision. We changed schools to one that has zero tolerance for bullying and our son is in the playground without supervision and doesn't hit anymore, he is happy and wanting to go to school, stomach up sets are no longer and it was affecting him mentally and physically. Top me if 1 school can have a zero tolerance why can't others.
o    Anonymous said… This makes me sick! I would go to the Board!! If that didnt work, I would get a Lawyer!!
o    Anonymous said… TOTALLY agree. I was going to say same thing when I read your post. School has a LEGAL obligation to accomodate a child with special needs. Sadly, you might have to pull that card and threaten them with a human rights complaint.
o    Anonymous said… We had to move schools. But it was well worth it
o    Anonymous said… Yes go to the board!!!! I did and if they put her on homebound....
o    Anonymous said… You’ll be lucky most schools dont want to know x
•    Anonymous said...  "Provocative victim". Go and look it up please and then quote it to the school. I went through this with my son all through primary school. Withdraw him and tell the
LEA why you are withdrawing him. I wish I had. Serious good luck. Incidentally secondary schools are better x
•    Anonymous said... Asperger kids perceive things differently so a kid with a snarky comment may have one kid give a snarky comment back and it rolls off their back..an asperger child takes it offensively because he can't understand rude words and then laughter as an "Imi kidding" they take it as rude comment you are laughing at me....I think the many years my son was "bullied" was because he didn't perceive it as joling around but more they are picking on me...and we as his parents supported that because we at home do not joke around by putting the other person down or calling each other names but if you have aspergers you follow the rules and takes things literallly, all.the.time...whereas my younger son can take the joke and give back the rude insults laugh it off and carry on...my older son with aspergers cannot....AND because he sees that funny joking insulting humor gets laughs he tries to be "funny" but he is then just really rude because he doent get the social aspect of the kidding around...the rules are not finite and aspergers kids didnt get the memo....so frustrating.
•    Anonymous said... Go to the superintendent if you have to. If he's been diagnosed by a dr the school can't fight that. My son was bullied so badly we are now homeschooling.
•    Anonymous said... He does NOT start arguments by 'annoying' ppl. He is a person with a disability and students r responding with hatred to that disability. Students might find behaviours associated with his disability annoying, but that is not the child with the disability's fault or problem. Shame on that teacher for not recognizing this and for blaming the victim of bullying.
•    Anonymous said... I just was asked to sign a petition for an anti bullying law. Your example is why I think this law is such a bad idea. The child with autism that is being bullied is being blamed for starting it by annoying others. This will come back badly for children with Autism that it is supposedly designed to protect. Think this stuff all the way through before jumping on board and signing a petition for anti bullying laws. It could have a very bad outcome for our children.
•    Anonymous said... I put my child in scouts for one and started to forge friendships. We taught lessons on inclusion through the badges earned. Problem to watch for is stacking all the special needs children in one troop. Once parents learn your good at this, everyone wants your troop and then soon the typical peers don't want to be in a troop with that many special needs children. My child's scouting friends began to stick up for my child. That was the beginning to change.
•    Anonymous said... It's so hard for them, especially when they are young. My son is five and most times, he doesn't know when someone isn't being nice to him. And he also doesn't realize when he is being rude or antagonistic. We go over the scenarios daily and consistently. He is improving, but it is something he has to practice and learn, like reading or math. It isn't innate, like most of us take for granted.
•    Anonymous said... My 11 year old boy has struggled with this issue since first grade (he is in sixth now). Not only have there always been the bullying kids (mostly other boys), there have been bullying adults who must interact him. It has only been this year that we've been convinced of an Aspergers diagnosis (not professional, although he does see a school psychologist at this point). We came from a high tech area in California and moved to a much more rural, mountainous area where education is not a big priority for a lot of kids. He is not challenged academically here at this current school. Some teachers and other administration didn't understand him, he has struggled socially (wanting friends, but never fitting in). His head is in technology, but he thrives in all subjects. He is athletic, but not interested in playing sports. He teaches himself anything he wants to learn. He is an amazing kid, however because of the constant bullying, we see a change in him. More depression, lower self-esteem, etc. Through the advice of the psychologist (who does NOT work for the school though she does work AT the school), she has recommended a different school setting. One where he will have more peers. So we have decided on taking him out of school after the holidays and we'll homeschool him through the end of this school year. After that, we'll be sending him to a charter school in a town nearby which is a college prep middle through high school. I have the belief that with more kids who "get" him, he'll end up having a positive middle school experience. We are fortunate that we can do this for him, whereas I realize a lot of folks cannot take the time to homeschool and on top of that, it's not easy. I had read the attached article a few months ago and decided to email it to his primary teachers (he has two). One teacher is so ridged, that without a IEP, she doesn't do much to change her teaching style with him. The other teacher understands him and stands up for him when he lets them know he is being bullied, taunted or teased. Schools NEED to be educated on kids that have different learning techniques and all other adults need to understand Aspergers and all spectrum kids for this to ever get better.
•    Anonymous said... My son has the same issue - his way of interacting makes others uncomfortable at times. The school has fought his Asperger's diagnosis for years choosing instead to classify him as "Emotionally Impaired". For me, the best I can do is attempt to help my son understand social situations. People are not going to change for him, so he needs to adjust his way of interacting based on others (not fair, but nothing is in life). His school social worker is finally understanding and starting to include him in with a group of kids who only work on social interaction and that has helped a little. If you happen to know the other kids, its great to be able to talk to them to be able to explain that your son isn't trying to be annoying and what they may be able to do to adjust their behavior to help him. If not, it's all on helping your son understand and adjust.
•    Anonymous said... My son is the exact same ! As I see it some kids r brought up not to except anything that's a bit different . I tell my son if people were all the same it would be a boring place!
•    Anonymous said... My son was blamed for his own bullying in pp, he came home bawling every day and ended the year saying he wished he was dead - he was six. Teachers should be better trained, I think the bullying also comes from the teachers which makes the kids think it's okay.
•    Anonymous said... Putting it blunty,the little bastards who make these poor kids life a living hell,usually have 1 or maybe 2 big bastard bullies at home learning them there greedy bombastic bullying ways.If they had been brought up in a loving family and taught right and decency not just take what you can and humiliate anybody round you,they wouldnt behave like it,to these poor defenceless littluns and if i caught a kid of mine bullying like that id drowned the little bleeder.xx
•    Anonymous said... Read the book "look me in the eye" it gave me some insight into the situation, the teachers said he was "bossy" but the book says they think differently about how the game should be played and are trying to teach the other children "the right way" good luck everyone, it's tough! We home schooled and he has gone from F's to A's and B's and is getting the achievement award, a very big difference to last years ending. His teacher is lovely (although we didn't start off on the right foot) and he has a few friends, although he still gets bullied. Stick with it, do what you have to and things can turn around, we are their only voice and we love them and see them for the special people that they are
•    Anonymous said... This is my biggest fear about sending my young son to school next year...he has a huge heart and sees everyone as a potential friend, but his approach catches other kids off-guard and they often don't understand. Parents need to teach their kids to love other people...simple.
•    Anonymous said... We all walk to the beat of different drums.It's so hard to stand by and watch your child get bullied. Everyone...not just parents need to take a stand. Bullying is NOT OK.
•    Anonymous said... We are going through the same as our son has just gone to secondary school and is really struggling.kids are not being kind and he just doesn't understand the way other kids can play fight and say mean things and it be a joke so he says things he hears and is being chased and threatened and is bewildered why!!
 
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ASD Level 1: Quick Facts for Teachers

"Would you have a simple summary, kind of a snapshot, that describes the most relevant aspects of ASD Level 1 that I can give my son's teacher so that she can get a basic understanding of this disorder without having to read a book on it?"

Sure! Just copy and paste the quick facts below, and give it to the teacher...

ASD Level 1:
  • is a developmental disorder, not a disease or a form of genius
  • affects language less, but does present with difficulties in appropriate speech and communicative development
  • affects the way a child relates to others
  • is a highly functional form of autism
  • leads to difficulties in reading non-verbal cues
  • is characterized by social interaction difficulties and impairments related to a restricted, repetitive, stereotype behavior
  • is not the result of "bad parenting"
  • is often confused with ADD and ADHD
  • is not classified as a learning disability, but it is a disorder that impacts learning
     
Treatment:
  • can help children learn how to interact more successfully with their peers
  • focuses on the three main symptoms: poor communication skills, obsessive or repetitive routines, and physical clumsiness
  • involves medication for co-existing conditions, cognitive behavioral therapy, and social skills training
  • is geared toward improving communication, social skills, and behavior management
  • is not a cure, but there are a number of different interventions that have been shown to be effective in reducing symptoms associated with ASD
  • mainly helps to build on the child’s interests, teaches the task as a series of simple steps, and offers a predictable schedule
  • requires an interdisciplinary approach (i.e., speech pathologists, social workers, psychologists and developmental pediatricians all may be involved in treatment)
  • should be tailored to meet individual needs
  • strives to improve the child's abilities to interact with other people and thus to function effectively in society and be self-sufficient
  • is a complex process that involves spending time with the child, gathering background information from parents and teachers, directly testing the child, and integrating information into a comprehensive picture

Facts as reported by children with ASD Level 1:
  • To talk to a person with ASD may be like talking to a college professor.
  • Having ASD is like being on a different planet. 
  • Sometimes having ASD is really annoying because, for example, at school, I get special treatment or other people pick on me because I'm weird or different.

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

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

    •    Anonymous said... I agree my 8 year old son has ASD and we just stayed in constant communication. With the teacher, principal and assistant principal. They all were wonderful with my son. We take each day as it comes. The one problem we have is what sets him off today May not set him off tomorrow
    •    Anonymous said... I would create a snapshot on YOUR child. The problem with a book or a checklist is that it may or may not apply to your son. That is who the teacher should be concerned with. Any prior experience with or knowledge of children with autism should be thrown out the window because every child is so unique.
    •    Anonymous said... They are sensitive, they can't read facial expressions so they cannot predict what may happen so any changes need earliest notification to reduce stress, fear and the urge to run.
    •    Anonymous said... They understand express their thoughts and emotions but will not necessarily notice, be bothered by or understand yours / others. This is a skill that is not innate to them but can be learned. Oh yes and they are amazing.

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    RE: "How can we get him to change his eating habits?"

    "My grandson has ASD. He is age 7. His diet consists of cheese, eggs, bread, milk, juice, wieners, fish, hamburgers, chicken, mashed or French fried potatoes and, on occasion, chocolate and bananas. He will eat no pasta, vegetables, or any other fruit. Does this eating problem go along with Autism? How can we get him to change his eating habits?" 

    Your grandson’s disorder may cause unusual reactions to new foods and he may not want to eat them. To him, they may taste bitter, salty, or just plain awful. They may smell bad (to him). He may dislike the textures of new foods. Consequently, he doesn’t want to eat foods that cause these reactions.

    Compared to some other kids on the spectrum, your grandson’s diet is not that terrible. He gets protein from eggs, milk, cheese, wieners, fish, hamburger, and chicken  ...grains, which provide B vitamins, from bread and hamburger and hot dog buns  ...some vitamins and minerals, including vitamin C, from juice, potatoes, chocolate, and bananas  ...and calcium and vitamin D from milk and cheese.
     
    ==> Parenting Children and Teens with High-Functioning Autism: Parents' Comprehensive Handbook

    All in all, his diet could be worse and is not much different from what many neurotypical children eat. However, his diet would be more nutritious if he ate more fruits, vegetables, and grains. Perhaps he would try some whole grain cereals. 
     
    Many autistic children like Life cereal or Cheerios. See if he likes popcorn, which is a whole grain (don’t load it up with a lot of butter, though). Try whole grain breads, hamburger and hot dog buns. 
     
    He might like whole grain rice. Try it mixed in a cheese and chicken casserole. Most kids like macaroni and cheese. See if he does. Try tacos made with whole grain tortillas, hamburger, and cheese. You might be able to sneak in some chopped tomato and onion. Use low fat hamburger and 1% milk.

    See if he will drink different types of fruit juices. There are new ones on the market that are delicious and have a serving of fruit and one of vegetables in each glass. Many fruits may taste sour to him. If he likes cereal, slice half of a banana on it. 
     
     
    Canned peaches and pears are sweet and may appeal to him. Cut up fruits into bite sized pieces so they are easy to eat. Don’t chastise him if he doesn’t eat them; maybe in the future he will. Make small apple or blueberry muffins. He might like them, too. Yogurt with fruit is an option you could try.

    As far as vegetables are concerned, it may be an uphill road! But, sometimes vegetables can be hidden in other foods, for example, in those juices mentioned above. How about putting some onion in his hamburger? Potatoes are vegetables and he likes them! Try oven frying the French fries instead of frying in oil. Blend some cooked cauliflower into his mashed potatoes. 
     
    He may not notice the difference. He may like sweet potatoes. He might like creamed corn or cornbread. Does he eat any soup, such as pea soup or vegetable? You could try tomato soup made with milk -- he might like it. If you put finely chopped, frozen carrots and peas in a chicken/cheese casserole, he might eat them. Avocado has a bland taste, and you could mix it into his hamburger patties.

    It’s very important not to make “a big deal” about what he doesn’t eat. If you do, eating will become a power struggle. Offer various new foods along with ones he likes. If he doesn’t like them, don’t make an issue of it. Some battles aren’t worth constant fighting, especially when his diet isn’t too bad to begin with. Keep serving some new foods along with the old ones. Avoid serving soda pop and sweets so he doesn’t fixate on them.

    Lastly, make sure he has a multivitamin each day. Get one that is chewable, tastes good, and has a cute shape. Also, drinking Ensure or Pediasure is a good way to supplement his diet with vitamins and minerals.
     
    Best of luck!
     
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    Understanding Theory of Mind Deficits in Autistic Children: Misbehavior or Misunderstanding?

    The concept of "theory of mind" refers to the ability to understand that others have their own beliefs, desires, and intentions, w...