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Sibling Relationship Issues: Message to Parents of Children with Autism Spectrum Disorder

"Any tips for helping my two older children (not autistic) to have a little more compassion for their younger brother who does have autism? I try to help everyone get along, but it is wearing me out. Playing peace-maker is definitely my toughest job at present. Help!"

Parenting in general can be overwhelming. Add autism (ASD Level 1) to the equation, and the job just got tougher!

Taking care of a youngster on the autism spectrum can take up the vast majority of the parent's time and energy. From learning everything you can about the condition and what it entails ...to various doctor and specialist appointments ...to seeing about special accommodations both at home and at school, the list of things that must be done can seem endless. Fitting time and effort into more than cursory attention to your neurotypical (i.e., non-autistic) kids who are also under your care can easily fall by the wayside without you realizing it.

Sibling relationships can be challenging when one child has ASD. Siblings often do not understand this disorder and the challenges that it creates. Also, the child with the disorder may take attention away from the other children, and may even embarrass them because of his or her inappropriate behavior. The family as a whole will face challenges beyond those of the typical family.

Siblings of a child with ASD may:
  • Be overly helpful to get attention
  • Feel alone or jealous
  • Feel angry towards their sibling
  • Feel embarrassed or bitter when they have to include their sibling in social situations
  • Feel guilty for not having the disorder
  • Feel resentful for having to care for their sibling

Sometimes the jealousy and resentment comes not so much from the extra time or attention their "special needs" sibling gets, but from a lack of understanding about why he gets that extra time or attention. Siblings might understand that their autistic brother or sister has a developmental disorder, but not understand the full effects of what that means. So, have them help you care for their sibling.

Maybe your neurotypical children can help with homework, or accompany you to a doctor visit or therapist appointment to see what really happens there. You certainly don't want to make any of this their full time responsibility, but by doing it once or twice, it can help open their eyes up to just why it is that you have to devote the extra time or attention to their autistic sibling. It can also make them more compassionate to autistic kids in general.

Being organized is essential. Keep track of your efforts. One of the best things any mother or father can do to is to schedule not only doctor and other appointments, but also certain events such as playtime. Be sure to set aside time for each child individually, at least once a week if not more, along with other family time. This does not mean you can’t be spontaneous, but it does allow breaks in your busy pace to occur more often if you purposely pen them in between all the other appointments.

Don't be afraid to talk about the disorder and the effects it is having on your family. Siblings need to understand this disorder to the extent that they can, based on their developmental stages.

Sibling rivalry can be a healthy sign, as it is common in all families and indicates that the youngster with ASD is being treated as any other sibling would. However, recognizing that this child can present some very real and challenging behaviors, it is important to prevent aggressive behaviors.

 A social story for neurotypical siblings:





* More information on this issue can be found here: Helping Non-Autistic Children Cope with Their ASD Sibling


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

==> Videos for Parents of Children and Teens with ASD
 
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 Here's what other parents have had to say:

•    Anonymous said... Finding balance is a difficult thing. I know that my 10 year old feels I give his younger brother (9 year old with ASD) much more of my time and its probably true. It's a tough situation to always be in. I've talked to my oldest about the challenges our youngest deals with and he'll give his brother a break for a liitle while, but before you know it...he's right back to pushing his brother's buttons.  So wish I could have a day of peace.

•    Anonymous said... That is a tough job and it will wear you down real fast and in a hurry. My family has gotten a lot of help from ICM's and other therapists and still at times I want to pull my hair out but I do my best to be patient. It's hard being the only peace maker in the home and it's even harder when others do not want to understand. That's the case in my home anyway. Sometimes there's just not enough caring to go around. My oldest son has Aspergers and he's 14 and slowly I have learned to live with certain things and deal with things when it comes to him but when it comes to others in my home I almost have no tolerance for their actions and behaviors towards my oldest son. Sometimes I feel he is picked on just to get a rise out of him and if it wasn't for the help we get I would have already went crazy. I count on resources a lot and I am always looking for more ways to help my son and help my family.

•    Anonymous said... I'm having the same issue with my 15 year old daughter and 8 year old son who has Aspergers. He isn't on any meds yet due to his father...going to meet with the dr Saturday and Dr will emphasise the importance of it.

•    Anonymous said... My older daughter doesn't have asperger's but my son does and it has caused a lot of jealousy. I have had to explain to her that he get more time with certian things because that helps him be equal to her. She should be glad that she doesn't have those same problems to overcome and should be happy for that. No one expects her to answer for him.

•    Missy said... Mine is the other way around--DD15 has Asperger's, while DD11 is neurotypical. DD11 struggles at times to understand why her sister is treated differently than she is. DD11 has had to grow up in a hurry, having to help take care of her older sister at times.

•    Unknown said...I'm having a tough time. My 20 yr old son has just been diagnosed with aspergers. His 17 yr old brother is increasing intolerant and has a sharp tongue sometimes making derogatory comments which result in fights. Any advice please I'm desperate .

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Kids with ASD Who Worry Excessively: Crucial Tips for Parents

"I need some advice on how to help a very anxious son (with ASD) to deal with his strong emotions. He is very unsure of himself, needing constant reassurance and last minute accommodations."
 
Some kids with ASD [High-Functioning Autism] worry excessively and are often overly tense and uptight.  Some may seek a lot of reassurance, and their fears may interfere with activities. Moms and dads should not discount their youngster’s concerns – even when they seem unrealistic. 

Because fretful kids on the autism spectrum may also be quiet, compliant and eager to please, their difficulties may be missed.  The parent should be alert to the signs of excessive worrying so he/she can intervene early to prevent complications.

There are 3 different types of worries in these young people:
  1. fretting about being separated from the parent (e.g., being overly clingy, constant thoughts about the safety of parents, extreme worries about sleeping away from home, frequent stomachaches and other physical complaints, panic or tantrums at times of separation from the mother or father, refusing to go to school, trouble sleeping or nightmares, etc.)
  2. fretting about getting physically hurt (e.g., extreme apprehension about a specific thing or situation like getting bit by a dog, stung by a bee, stuck with a needle, etc.)
  3. fretting about being around people who are not familiar (e.g., avoidance of social situations, worries of meeting or talking to new people, few friends outside the family, etc.)
 
Other symptoms of excessive worrying in kids on the spectrum may include:
  • constant concerns about family, school, friends, or activities
  • fear of making mistakes
  • low self-esteem
  • lack of self-confidence
  • fears about things before they happen
  • repetitive, unwanted thoughts (obsessions) or actions (compulsions)

Moms and dads can help their child develop the skills and confidence to overcome excessive worrying so that he/she doesn't develop phobic reactions to certain stimuli.





To help your youngster deal with worries and anxieties, consider the follow tips:

1. Don't cater to your child’s fears. If your youngster doesn't like dogs, don't cross the street deliberately to avoid one. This will just reinforce that dogs should be feared and avoided. Provide support and gentle care as you approach the feared object or situation with your youngster.

2. Never belittle your child’s concerns as a way of forcing him to overcome them. Saying, "Don't be ridiculous! There are no monsters in your closet!" may get your youngster to go to bed, but it won't make the related anxiety go away.

3. Recognize that your child’s worries are real. As trivial as it may seem to you, it feels real to her – and it's causing her to feel nervous and afraid. Being able to talk about these feelings helps. Words often take some of the power out of the negative feeling. If you talk about it, it can become less powerful.

4. Teach coping strategies. Using you as "home base," your youngster can venture out toward the feared object, and then return to you for safety before venturing out again.

5. The youngster can learn some positive self-statements, such as, "I can do this" and "I will be OK" …to say to herself when feeling out of sorts.


==> Research-Based Parenting Strategies for Children with Asperger's and High-Functioning Autism


6. Relaxation techniques are helpful, including visualization (e.g., floating on a cloud, lying on a beach, etc.) and deep breathing (e.g., imagining that the lungs are balloons and letting them slowly deflate).

7. Teach your child to rate his level of worry. A youngster who can visualize the intensity of his fears on a scale of 1 to 10, with 10 being the strongest, may be able to "see" the anxiety as less intense than first imagined. The child can think about how "full of fear" I am, with being full "up to my knees" as not so afraid, "up to my stomach" as more frightened, and "up to my head" as truly petrified.

8. If your youngster's apprehension consistently seems out of proportion to the cause of the stress, this may signal the need to seek outside help (e.g., counselor, psychiatrist, psychologist). Moms and dads should look for patterns. If an isolated incident is resolved, don't make it more significant than it is. But if a pattern emerges that's persistent or pervasive, you should take action. Contact your doctor and/or a mental health professional that has expertise in working with children and teens on the autism spectrum.

The key to resolving excessive worries and anxieties is to overcome them. Using the suggestions above, you can help your youngster better cope with life's situations.


By

Undiagnosed and Misdiagnosed ASD [Level 1]

ASD manifests in many ways that can cause difficulties on a daily basis.

Here are some examples of what to look for:

• Being naive and trusting
• Confusion
• Delayed motor milestones
• Delighting in fine details such as knobs on a stereo
• Difficulty in conversing
• Difficulty with multitasking
• Extreme shyness
• Lack of dress sense
• Mixing with inappropriate company
• Not understanding jokes or social interaction
• Quoting lists of facts
• Unusual and obsessional interests

One of the worst problems is that you can never really understand what is going on inside your youngster's head. This makes it so difficult for you to understand his behavior. This can leave you feeling emotionally beat-up and completely useless as a parent. You may have to cope with crisis on a daily, hourly or even minute-by-minute basis.

Undiagnosed ASD—

Undiagnosed ASD is an issue that concerns me because so many kids have the disorder and are struggling to make it in this world with very little help or resources. Just today, I met someone who said that it was suggested that their youngster had Oppositional Defiant Disorder (ODD) without anyone recognizing the other behaviors that are just as relevant.
 

There are many characteristics for autism spectrum disorder, but one thing that goes unnoticed is that there can be a secondary diagnosis clouding the picture and causing undiagnosed ASD. Many kids on the spectrum also have ADHD, for example. ADHD can cause behaviors that draw an excessive amount of attention, thus the undiagnosed ASD can be overlooked.

Commonly undiagnosed conditions in related areas may include:

o ADHD -- Undiagnosed
o Adult ADHD -- Undiagnosed
o Alzheimer Disease -- Undiagnosed
o Bipolar Disorder -- Undiagnosed
o Concentration Disorders -- Undiagnosed
o Epilepsy -- Undiagnosed
o Migraine -- Undiagnosed
o Schizophrenia -- Undiagnosed
o Stroke -- Undiagnosed

Undiagnosed ASD Leads To Life as an Outsider

For most of his life, Michael felt like an outsider. Restless and isolated, he was over-stimulated and uneasy around others. Finally, when he was 45, he was diagnosed with ASD, a syndrome that falls within the autism spectrum. The diagnosis came as a relief: Here, finally, was an objective explanation for some of my strengths and weaknesses

People on the spectrum often struggle to interact with groups and understand social norms. Michael describes himself growing up as a "very lost little kid" who acted out in school by making faces at teachers and being aggressive with the other students. His ability to connect to others didn't improve with age.

Music — particularly the repeating patterns of melody — provided him with a refuge from an early age. He remembers listening to his mother's record collection and experiencing a "passage into a world where everything made sense." He compares listening to music to watching clouds change slowly over the course of an afternoon.

As for his diagnosis with Aspergers, Michael says it has helped him accept the parts of his nature that are "not very changeable." Wearing eyeglasses, for instance, makes him feel like he is "being intimate with everybody on the street." As a result, he rarely wears them now — even though he received his first prescription for glasses when he was in kindergarten.

Misdiagnosed ASD—

Many kids with ASD [high-functioning autism] are misdiagnosed as having ADHD with no investigation by medical professionals of the possibility of ASD. In one case, a child was treated for ADHD for years before anyone mentioned autism. 
 

ASD can be a difficult diagnosis to make because there is no single test to detect it. An accurate diagnosis generally requires the evaluation of a team of professionals who are specialists in developmental disorders. In addition, the symptoms of ASD are similar to some symptoms of some other disorders. This can result in a delayed or missed diagnosis. Kids and adults with ASD may be misdiagnosed with other conditions with some similar behaviors, such as obsessive-compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD).

The other conditions for which ASD is listed as a possible alternative diagnosis include:

• Schizoid Personality Disorder
• Schizotypal Personality Disorder

Other Common Misdiagnoses:

• ADHD under-diagnosed in adults: Although the over-diagnoses of ADHD in kids is a well-known controversy, the reverse side related to adults. Some adults can remain undiagnosed, and indeed the condition has usually been overlooked throughout childhood. There are as many as 8 million adults with ADHD in the USA (about 1 in 25 adults in the USA).

• Bipolar disorder misdiagnosed as various conditions by primary physicians: Bipolar disorder (manic-depressive disorder) often fails to be diagnosed correctly by primary care physicians. Many patients with bipolar seek help from their physician, rather than a psychiatrist or psychologist.

• Blood pressure cuffs misdiagnose hypertension in kids: One known misdiagnosis issue with hypertension arises in relation to the simple equipment used to test blood pressure. The "cuff" around the arm to measure blood pressure can simply be too small to accurately test a youngster's blood pressure. This can lead to an incorrect diagnosis of a child with hypertension. The problem even has a name unofficially: "small cuff syndrome".

• Brain pressure condition often misdiagnosed as dementia: A condition that results from an excessive pressure of CSF within the brain is often misdiagnosed. It may be misdiagnosed as Parkinson's disease or dementia (such as Alzheimer's disease). The condition is called "Normal Pressure Hydrocephalus" (NPH) and is caused by having too much CSF, i.e. too much "fluid on the brain". One study suggested that 1 in 20 diagnoses of dementia or Parkinson's disease were actually NPH.

• Kids with migraine often misdiagnosed: A migraine often fails to be correctly diagnosed in pediatric patients. These patients are not the typical migraine sufferers, but migraines can also occur in kids.

• Dementia may be a drug interaction: A common scenario in aged care is for a patient to show mental decline to dementia. Whereas this can, of course, occur due to various medical conditions, such as a stroke or Alzheimer's disease, it can also occur from a side effect or interaction between multiple drugs that the elderly patient may be taking. There are also various other possible causes of dementia. 
 

• Depression undiagnosed in teenagers: Serious bouts of depression can be undiagnosed in teenagers. The "normal" moodiness of teenagers can cause severe medical depression to be overlooked.

• Eating disorders under-diagnosed in men: The typical patient with an eating disorder is female. The result is that men with eating disorders often fail to be diagnosed or have a delayed diagnosis.

• Mesenteric adenitis misdiagnosed as appendicitis in kids: Because appendicitis is one of the more feared conditions for a youngster with abdominal pain, it can be over-diagnosed (it can, of course, also fail to be diagnosed with fatal effect). One of the most common misdiagnosed is for kids with mesenteric adenitis to be misdiagnosed as appendicitis. Fortunately, thus misdiagnosis is usually less serious than the reverse failure to diagnose appendicitis.

• Mild worm infections undiagnosed in kids: Human worm infestations, esp. threadworm, can be overlooked in some cases, because it may cause only mild or even absent symptoms. Although the most common symptoms are anal itch (or vaginal itch), which are obvious in severe cases, milder conditions may fail to be noticed in kids. In particular, it may interfere with the youngster's good night's sleep. Threadworm is a condition to consider in kids with symptoms such as bedwetting (enuresis), difficulty sleeping, irritability, or other sleeping symptoms. Visual inspection of the region can often see the threadworms, at night when they are active, but they can also be missed this way, and multiple inspections can be warranted if worms are suspected.

• Mild traumatic brain injury often remains undiagnosed: Although the symptoms of severe brain injury are hard to miss, it is less clear for milder injuries, or even those causing a mild concussion diagnosis. The condition goes by the name of "mild traumatic brain injury" (MTBI). MTBI symptoms can be mild, and can continue for days or weeks after the injury.

• MTBI misdiagnosed as balance problem: When a person has symptoms such as vertigo or dizziness, a diagnosis of brain injury may go overlooked. This is particularly true of mild traumatic brain injury (MTBI), for which the symptoms are typically mild. The symptoms has also relate to a relatively mild brain injury (e.g. fall), that could have occurred days or even weeks ago. Vestibular dysfunction, causing vertigo-like symptoms, is a common complication of mild brain injury. 

• Parental fears about toddler behavior often unfounded: There are many behaviors in infants and toddlers that may give rise to a fear that the youngster has some form of mental health condition. In particular, there is a loss of fear of autism or ADHD in parents. However, parents should understand that the chances are higher that it's part of normal development, and perhaps just a "cute behavior" rather than a serious condition. Although parents should be vigilant about monitoring all aspects of their child's development and mental health, they should also take care not to over-worry and miss out on some of the delights of parenthood. For example, a young child that screams when you open his car door to take him out, then makes you put him back into the car to repeat it, so that he can open the car door himself, is not necessarily showing signs of autism or OCD, nor indeed any mental illness. There is a small possibility that it's an abnormality (a chance that increases with age of the youngster), but it's also the type of behavior seen in many normal kids.

• Post-concussive brain injury often misdiagnosed: A study found that soldiers who had suffered a concussive injury in battle often were misdiagnosed on their return. A variety of symptoms can occur in post-concussion syndrome and these were not being correctly attributed to their concussion injury.

• Undiagnosed anxiety disorders related to depression: Patients with depression may also have undiagnosed anxiety disorders (see symptoms of anxiety disorders). Failure to diagnose these anxiety disorders may worsen the depression.

• Undiagnosed stroke leads to misdiagnosed aphasia: BBC News UK reported on a man who had been institutionalized and treated for mental illness because he suffered from sudden inability to speak. This was initially misdiagnosed as a "nervous breakdown" and other mental conditions. He was later diagnosed as having had a stroke, and suffering from aphasia (inability to speak), a well-known complication of stroke (or other brain conditions).

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

Teenagers with Autism Spectrum Disorder and their Social Skills Troubles

Question

How do you get teenagers with ASD [level 1] to recognize that the social skills that you are trying to teach them (often to no avail) are imperative if they are to get on in life with regard to finding friends, a job etc.? Teens with ASD often seem in such a world of their own that they cannot appreciate the importance of those social skills. In our case, we have an adolescent who thinks that they are always right anyway and so see no need to modify their behavior.

Answer

The teen years can be a trying time for moms and dads and kids alike. As parents, we know that our adolescents have a lot of growing up to do. As adolescents, our kids cannot figure out how we made it to adulthood with so little knowledge and understanding! 
 
 The truth is, these years bring about difficult adjustments on both parties, and this happens whether or not you are dealing with ASD (high-functioning autism).

Adolescents with ASD have lived through the elementary and middle school years and have struggled with social skills weaknesses all along. Through years of classroom experiences, a social base has been built. It may not be strong, but it is there. All you have to do is find a way to add to it. The same is true for basic living skills. 
 
 


 
Here are some suggestions you may find helpful:

• Find resources to help you choose appropriate tasks/skills for your adolescent. You can find books that are geared towards adolescents with ASD. These books highlight the skills needed that may not come naturally.

• Instead of pushing your adolescent to recognize his need for these social and basic living skills, try building them into his daily schedule. As the parent, you can require his participation in daily chores, personal hygiene, and even part-time employment. 
 

• Reinforce your chore/responsibility requirements with rewards and consequences. Be consistent.

• Use calendars, written schedules, and visual daily lists to plan your adolescent’s daily commitments. While it is true he/she may not appreciate having chores and planned responsibilities, chances are he/she will become accepting when faced with negative consequences.

Sometimes moms and dads have to find sneaky ways to teach their kids. It sounds like this may be one of those times in your home. One of the most effective ways to accomplish this is to bring in another trusted adult. Involving a favorite teacher, a relative, church leader, or coach may help your adolescent see that these skills you have been pushing are indeed very important.
 
 


 
 


PARENTS' COMMENTS:

•    Anonymous said… I am happy to hear others struggling in the same way. I can't tell you how many times a day I have said that his words or tone of voice are rude and hurtful!
•    Anonymous said… I can write a book. Not a easy journey at all. Aspergers has its stages. I'm bless to have my sanity 16 years and counting (teenager).
•    Anonymous said… If your son knows he's going to be punished and it escalates into a meltdown, it's not escalating into a meltdown. It's escalating into a tantrum so that he can avoid the punishment. Learn the difference between a tantrum and a meltdown, and learn when autistics make their meltdowns look like tantrums so that they can avoid punishment. When it's a tantrum, and when he is faking, do not withhold punishment.
•    Anonymous said… Lots of wonderful stuff in there. But for us the rewards system did not work and the psych explained that for many ASD kids the sticker charts ect do not work for behaviours as the kids have little control over their emotions and reactions. They are effective for menial tasks like chores around the house, but not for sitting still or for doing homework etc
•    Anonymous said… My 15 year old daughter has no problem with household chores, part time job or personal hygiene. I'm having a really difficult time teaching her how to speak to and treat her friends respectfully. She swears, creates drama, won't back down in a disagreement, won't admit to being wrong, won't apologize and doesn't understand the need to do any of that. She knows how to be polite and respectful and is with people she isn't close to. She thinks those close to her she just accept "the real her" bad behaviour and all. She doesn't seem to care that she hurts them.
•    Anonymous said… on a waiting list to find out if my 5 yr old has aspergers. I'm getting absolutely exhausted from the blow ups and hitting all the time it seems like lately. I'm lost.
•    Anonymous said… This is where we are right now with our 14 year old son...
•    Anonymous said… Totally same here...but different! Lol...our 17 year old gets that look in his eyes that says "i'm standing here because i know i have to but i'm ignoring everything you say..." it drives us nuts! Thankfully mr 17 isn't violent etc but van be very harsh with his words sometimes and really doesn't understand that he is, or tone etc. But for mr 17 it isn't so much "i don't care if they like me" as "i'm happy to live in my room with my computer for my whole life". Doesn't see the need for a job, or a license or anything. Zero aspirations....just apathy. My husband days he was the same at that age but i cannot fathom it...
•    Anonymous said… Yeap that's my son he's 12 and its been dificult for him and us(mom and dad) during this transition sometimes We fiel we're going to lose it. Its exausting imagine that both my husband and I are teachers despiste that we've all had a Hard time. Our son is also swearing using really harsh words and is also having lots of meltdowns schools aren't cutting it. Its been pretty dificult for everyone why should our Kids adapt to the rest???? It should be the other way around our education is behind our century. All I can say is that I'm greatful for this group and just knowing that we're not alone. THANKYOU

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By

School Refusal in Children with ASD

Question

What do you do if your 9 year old with high functioning autism is refusing to go to school ever again? Do I take her kicking and screaming? Home-school? What?

Answer

Some ASD (high-functioning autistic) kids experience fear or panic when they think about going to school in the morning. These kids may tell their moms and dads that they feel nauseous or have a headache, or may exaggerate minor physical complaints as an excuse not to go to school. 
 
When the ASD youngster or teen exhibits a developmentally inappropriate and excessive anxiety concerning separation from their home or from those to whom they are attached, they may be experiencing a Separation Anxiety Disorder. Separation Anxiety Disorder is characterized by the youngster exhibiting three or more of the following for a period of more than four weeks:
  1. persistent and excessive worry about losing, or about possible harm befalling, major attachment figures
  2. persistent and excessive worry that an untoward event will lead to separation from a major attachment figure (e.g., getting lost or being kidnapped)
  3. persistent reluctance or refusal to go to school or elsewhere because of fear of separation
  4. persistent reluctance or refusal to go to sleep without being near a major attachment figure or to sleep away from home
  5. persistently and excessively fearful or reluctant to be alone or without major attachment figures at home or without significant adults in other settings
  6. recurrent excessive distress when separation from home or major attachment figures occurs or is anticipated
  7. repeated complaints of physical symptoms (such as headaches, stomachaches, nausea, or vomiting) when separation from major attachment figures occurs or is anticipated
  8. repeated nightmares involving the theme of separation

 
In addition to the symptoms described above, ASD kids with an unreasonable fear of school may also:
  • display clinging behavior
  • fear being alone in the dark
  • feel unsafe staying in a room by themselves and frequently go check to find their parent or have a need to be able to see their parent (e.g., a teenager in a shopping mall who feels a lot of distress if they can't always see their parent may be exhibiting a symptom of separation anxiety)
  • have difficulty going to sleep
  • have exaggerated, unrealistic fears of animals, monster, burglars
  • have nightmares about being separated from their parent(s)
  • have severe tantrums when forced to go to school

School Refusal Warning Signs—

While one student may complain of headaches or stomachaches, another may refuse to get out of bed, while a third repeatedly gets "sick" and calls home during the school day. Symptoms can run the gamut and may even include combinations of behaviors. Here are some typical warning signs that an autistic youngster is suffering from school refusal disorder:

• Anxiety or panic attacks
• Depression
• Drug/alcohol use
• Failing grades
• Fatigue
• Frequent physical complaints such as headaches, stomachaches
• Physical aggression or threats
• Risk-taking behavior
• Social problems

Many symptoms, particularly physical complaints, can mimic other disorders. When these occur in combination with a pattern of not attending school, a complete evaluation should be made by qualified professionals to determine whether a student has school refusal disorder or another psychological or possibly even a physical disorder.

Separation Anxiety Disorder can be exhausting and frustrating for the moms and dads to deal with, but it is worse for the autistic youngster who feels such intense fear and discomfort about going to school. If moms and dads are unable to get the youngster to school, the youngster may develop serious educational, emotional, and social problems. 
 

Because the anxiety is about separating from the parent (or attachment object), once the youngster or teen gets to school, they usually calm down and are OK. It's getting them there that is the real challenge.

School avoidance or school refusal may serve different functions in different kids or teenagers. For some ASD kids or teens, it may be the avoidance of specific fears or phobias triggered in the school setting (e.g., fear of school bathrooms due to contamination fears associated with Obsessive-Compulsive Disorder, fear of test-taking). For other kids or teenagers, it may serve to help them avoid or escape negative social situations (e.g., being bullied by peers, being teased , or having a very critical teacher).

When school refusal is anxiety-related, allowing the "special needs" youngster to stay home only worsens the symptoms over time, and getting the youngster back into school as quickly as possible is one of the factors that is associated with more positive outcomes. To do that, however, requires a multimodal approach that involves the student's physician, a mental health professional, the moms and dads, the student, and the school team. 
 
The same therapeutic modalities that are effective with Panic Disorder and Obsessive-Compulsive Disorder are also effective for school refusal, namely, exposure-response prevention (a form of cognitive-behavior therapy that may include relaxation training, cognitive alterations, and a graded hierarchy of steps towards the goal).

There is some research that suggests that education support therapy may be as effective as exposure therapy for treating school refusal. Working with the school psychologist, the student talks about their fears and is educated in the differences between fear, anxiety, and phobias. They learn to recognize the physical symptoms that are associated with each of these states and are given information to help them overcome their fears about attending school. 
 
The student is usually asked to keep a daily diary where they record their fears, thoughts (cognitions), strategies, and feelings about going to school. The time of day that they arrived at school is also recorded, and the record is reviewed each morning with the school psychologist. Although it might seem like a good idea to incorporate positive reinforcement for school attendance, that may backfire and merely increase the student's stress levels and anxiety. 
 

Parent training in strategies to work with the youngster in the home is also an important piece of any school-based plan to deal with the student with school refusal.

When it comes to school refusal, accommodating the youngster by letting them stay home is generally contraindicated, unless there are other issues. So what can moms and dads do? Here are some tips:

• A youngster's reluctance to go to school can be irritating to moms and dads. Expressing resentment and anger is counterproductive. And you won't feel the urge to do so if you adopt specific strategies to assist your youngster.

• Be open to hearing about how your youngster feels. However, lengthy discussions about the youngster's problems are not always helpful and can be experienced as a burden by the youngster. The focus must always be that you want to help your youngster be free of worries and fears.

• Do not deny the youngster's anxiety or worries, but acknowledge them and reassure him/her. For example: "I know you're worried I won't be there to pick you up, but there's no reason to worry. I'll be there."

• Do not quiz your child about why s/he feels scared. The youngster often does not know why. By not being able to provide an explanation, in addition to being anxious, the youngster feels guilty about not making sense of what is happening. Better to acknowledge that the fears make no sense and that the child has to fight them.

• It is most important to tell the Aspergers youngster exactly what s/he is to expect. There should be no "tricks" or surprises. For example, a youngster may be told that he should try to stay in school for only one hour, but after the hour he is encouraged or asked to stay longer either by the school or parent. This will backfire. The youngster will eventually refuse future arrangements for fear that they will be modified arbitrarily. Part of being anxious is anxiety about the unknown and the “what if?”.

• Punishment does not work, but kind, consistent, rational pressure and encouragement do.

• Try to find ways to enable the Aspergers youngster to go to school. For example, a youngster is likely to feel reassured if times are set for him or her to call the mother from school. In extreme cases, mothers may stay with the youngster in school, but for a specified length of time which is gradually reduced.

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

==> Videos for Parents of Children and Teens with ASD
 
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More articles for parents of children and teens on the autism spectrum:
 
Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

Click here to read the full article…

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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.

Click here for the full article...

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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.

Click here to read the full article…

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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."

Click here to read the full article…

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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.

Click here to read the full article...

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

Click here for the full article...
 
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A child with High-Functioning Autism (HFA) can have difficulty in school because, since he fits in so well, many adults may miss the fact that he has a diagnosis. When these children display symptoms of their disorder, they may be seen as defiant or disruptive.

Click here for the full article...


 
COMMENTS:

•    Anonymous said… Elizabeth Munoz. Try Wowbutter. It looks and tastes exactly like peanut butter but is 100% soya beans. It was made for school bans. My daughter can't tell the difference. And for me, the best thing ever (I developed an allergy after being pregnant!)
•    Anonymous said… Food is a major issue with kids I packed muly kids much everyday :)) that's what you have to do but depends on school cause he only liked pb and j sandwiches and the school wouldn't aloud penut butter so yes it a very difficult situation with food it sucks ://
•    Anonymous said… Food plays a huge part in upsetting my son and not wanting to go in he is only six of friends run off and don't wait for him to go in for lunch he doesn't go in and it's gone un noticed by dinner ladies !!thats a long time to go without food:( breaks my heart ,if I brought him home for lunch I wouldn't get him back in and he struggles with being different and standing out !difficult situation!!
•    Anonymous said… I had no choice, she wasn't kicking and screaming but her mental health wasn't right, we were abroad, since then I've worked with children and have a better understanding of myself and others with autism. We used to have units attached to schools (Weymouth had one) they were brilliant with good teachers and teaching assistants and environmental was geared to needs. That's what we need, we need to be allowed to decide main stream isn't always the way.
•    Anonymous said… I had this problem with my son, who has HFA, a couple of years ago. In the end I had to make the decision to keep him home, untill a meetting was set up with school and health care professionals, to decide how to proceed for his best interests. The reason being, he has autism related food refusal, and during the time he was do distressed about going to school, his food refusal got so bad that he started losing weight and became iron deficient. It took 2 years to finally get him settled and happy at school.
•    Anonymous said… I spent nearly EVERY day of my sin's first grade year with him refusing to go to school. The school told me he'd have to go to "truancy school", with kids from junior high! I completely freaked out and fought back, but basically we just struggled through the miserable year. Second grade was better--his teacher was AMAZING! Made all the difference.
•    Anonymous said… In my experience, you can only take them 'kicking and screaming' for so long before it takes its toll on the physical and emotional health of everyone involved. It might be helpful to keep in mind that behavior IS communication. Even for kids with this school refusal disorder, they aren't doing this just to make our lives miserable. Sometimes the school setting or routine just doesn't work for every child. Thankfully there are plenty of alternative schooling options these days!
•    Anonymous said… My sons school is great with the food issue. They always make sure he has something for lunch that he will eat. The problem was, he didn't transition very well from daycare to school, (I live in Sweden). When he first started he was fine. But three months in, he could no longer hold it together and the big change took it's toll, and he almost stopped eating all together, and ended up on specially prescribed drinks.
•    Anonymous said… No. Don't take her kicking and screaming. Find out why the child doesn't want to go. Wish I had done this with my older son back about 15 yrs. ago. Now I homeschool my youngest. Something I really wished I had done with my middle son.
•    Anonymous said… There can be all kinds of reasons why children on the spectrum suffer at school, from communication problems (and that covers everything from feeling bullied to not having a clue what is happening in class or what is required of them) to sensory overload. The drip drip of fear, anxiety and confusion may not even come out in meltdowns at school. Schools frequently refuse to understand or make even the simplist of accomodations. Forcing human beings into a situation detrimental to their mental health and ruining educational opportunities is abuse. It's power play on the adult side to never listen and accept childrens feelings.
•    Anonymous said… There isn't enough xaxax in this world for me to try homeschooling.
•    Anonymous said… there's no one fit fix for all. Know your child, hear your child and love your child and you'll know what the kick n scream is about.
•    Anonymous said… Unless the child is being abused, "why" they have problems in school is irrelevant. They are engaged in a power play with you. Do not let them win. Take it from someone on the spectrum who has taught and worked with autistics for years.
•    Anonymous said… We had this with Aspergers son. We insisted he go. We regretted that when he had a big meltdown at school and an altercation with teachers. He must have had a reason for the refusal.
•    Anonymous said… Also the school being proactive and setting up these meetings yourself really helps because alot of times things will go faster and smoother with us really involved, I kinda am learning as I go.
•    Anonymous said… Don't put her through it... she may be losing much more than any wins......homeschool or special learning schools - small size classes small school.....
•    Anonymous said… Homeschool. Works for us.
•    Anonymous said… If you can, you change your life and take them out of school.
•    Anonymous said… In second grade my daughter begs to not have to go. She quit sleeping at night, vomited in the morning, cried getting out of the car at school. Teacher said all is fine. She got back in the car in the afternoon, started crying, vomited all the way home and has massive meltdowns until bedtime and then the cycle started over. She was fine in school according to the school. At six weeks in I pulled her to homeschool. She was evaluated with a high IQ, Aspergers, anxiety and depression. It's been three years and life is much better for her. She is coping successfully educationally, emotionally and with her anxiety.
•    Anonymous said… Is there a reason why the child is refusing? is child being bullied? Is child failing classes? Do you have a school that has a special ed department with small classes? i have a current 7th grader in public school. K-5 he was in regular classes. since 6st grade he has been in a special day class with minimal students. His teachers have taught special ed for years and work very well with him and the other students in the class. We are currently working on getting placement for high school as the public high schools do not seem to have small classes for our sensitive kids. We are mainly looking at charters/magnets that have special ed departments with small classes. While my son attended regular classes in elementary, we tried last year to put him into a regular class for two hours and it was a nightmare. He developed bad ocd which led us to medicate him...a HUGE mistake for us as it made him violent.
•    Anonymous said… My 13 year old has aspergers and high anxiety. She was bullied at school, and I just couldn't send her back. We discovered K12 online schools. We have done it for 2 years now, and it is working for us.  :)
•    Anonymous said… My daughter is 9 and ad the yrs went on it got harder and nearly impossible to get her to school. I had to resort to homeschooling to stabilize the situation get her evaluated, take a break and get proper personalised tools in place to help her feel comfortable going to school. The school referred an aid from a program that would come an hour before school and go with her to school and stay for 2 more hours with her. That helped her atleast try school again but she still was off and on about school. Then we got an IEP and she has daily access to the special education room even though she's super smart. Ever since she has been able to go to the special education room she has been going to school since it's been about a week but she's doing good and that may be the key for her to be calm and go.
•    Anonymous said… My oldest is 14 and we have a 11 yr old too. They both refused to go to school and disliked it. I literally have took them both, carried them, crying and screaming. I had enough. How can they be learning? We have homeschooled for 4 years. Things are so much better. Not worth their anxiety and stress for my "quiet" time.
•    Anonymous said… My son is high functioning autistic.. The beginning of the school year was super rough...The first couple of weeks we had to drive him and take him in kicking and screaming (transitioning is not our strong point) but once he got used to going back he was fine.. Hes in 5th grade we have an IEP in place he eats lunch in the office and if hes having a rough morning he goes into the Deans office and hangs out with him.
•    Anonymous said… Not if you want to maintain a trusting relationship with your child. They aren't mucking up. It seems that this is pretty classic for our special kids (including mine). The school refusal is a cry for help and letting you know the current situation isn't working. Dragging her kicking and screaming will just traumatise her further and fracture the trust she has in your relationship with her. From my perspective no education is worth that. See if you can find another option for her that suits her needs better.
•    Anonymous said… Same issue here but a long time ago now. Oliver didn't see why he had to go to school but I pointed out it was the law and if he didn't go to school I would have to go to prison. He accepted this and went to school because he didn't want me to go to prison. Of course it depends on your relationship. I know some children who would see this as a bonus. He did continue to argue the point on a regular basis but I would remind him that it was the 'rule'.
•    Anonymous said… Same with mine but we had to support this by discussion during periods of calm. This included the odd occasion when we 'agreed' to his having a day off from school BUT he would have to go along with my plans for the day including stuff like shopping (which he hated). Oliver knew I had to go to work to pay for his food and computer stuff etc and essentially learned to rationalise his own thinking to accept the status quo. He continued to hate school but accepted the rules.
•    Anonymous said… Same with my 10yo Asperger's son. We started homeschooling this year. Perfect for our situation:)
•    Anonymous said… She was homeschooled for about 7 months this school yr during the whole process. She has asbergers, anxiety and adult defiant disorder.
•    Anonymous said… This works for some kids and worked with mine for a little while. My sons anxiety was too high to be able to make rational decisions once he was in a heightened state.
•    Anonymous said… You really have to be their advocate. So many untrained individuals that don't really understand our kids. Believe your kids more. My daughter is now in her twenties and out of frustrations of not knowing how to handle the spectrum as a whole a lot of abuse takes place. Which of course comes in many forms so can be very discouraging for our kids. Over the years some were caught and fired. It's really about having a heart to want to work with them with proper training. Stay strong and love and encourage them. They need us.

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Should You "Push" Your Adult Child with ASD to Be More Independent?

Question

"My brother has ASD and dyspraxia. I can’t help but feeling that my Dad is halting his independence. My brother has traveled to London with my dad on average every month to spend the weekend with our mum since he was 6 my mum met them in London as the half way point and took him to her home on the Isle of Wight. Since my brother was fifteen he has traveled to the Isle of Wight from London alone (thanks to my mum encouraging his independence) this involves a coach and then getting onto a cat across to the island. He is now 20 and my dad still say's that he is not ready to travel to London alone (1 train, no changes, no underground) "London is a scary place" he said. I think my brother is capable of doing this alone easily. I asked my dad when was the last time he asked my brother if he thought he could do it alone and he replied the last time they went my brother said he preferred to have dad with him. My dad said he doesn't want to push him to do something that he's not comfortable with. I replied that sometimes everyone needs to be pushed a little, he replied "EVERYONE DOESN'T HAVE AUTISM". My brother was pushed slightly to do the second part of the journey alone and is fine with it. Is it true that you shouldn't push someone who has ASD to be more independent?"


Answer

To your dad:

The balance between holding-on and letting-go is one of the most difficult things that moms and dads have to face with their ASD (high-functioning autistic) older teens and adult children. At this time in your son's life, it may be appropriate to take more of a back seat in many instances.  While others may want you to back away, you can still keep the lines of communication open with your son and help him do what it is he is trying to do.

For all young adults, we are expected to be in their lives and out of their faces at the same time. Your ASD son may have many good opportunities to reach out to peers if he is interested. If he doesn’t know how to, while it is now inappropriate for you to set up ‘play dates’ or constantly organize his social groups, you can offer occasional suggestions and coach him from the sidelines. 
 

Keep in mind that some older ASD adolescents do not want more interaction even though their moms and dads may feel it is important for them to have it. It is important to be sure that the social goals you set up for your son include what he wants now and not just what you think he should have or be doing. 
 
He may never be the life of the party and may always be a little on the periphery, but for him this could be a comfortable place - and one that he is used to. It could provide social interaction and friendships, and yet offer a comfortable distance and not a lot of pressure. If he wants more, you can help him learn to move in and reach out for more at his own pace.

When to hold on, when to let go, when to push, and when to pull ...these are some of the themes that every parent struggles with (both with “typical” and “special” children). The outcomes for kids and adolescents are best when moms and dads and professionals work as partners with mutual respect and shared decision-making power. 
 
Moms and dads, by virtue of their bond with their youngster, are true authorities in their own right, with information to contribute that no one else has access to. Professionals, on the other hand, through training and experience, can offer expertise and a broad perspective that moms and dads alone don’t have. Each has only partial knowledge, with complete expertise possible through team work (often with some trial and error however). 
 

Letting go may sound too drastic, and perhaps so. Maybe a more realistic way to look at this dilemma is to just loosen your grip and see what happens. If your ASD son seems to slip backwards, this may convince others that he needs more support than they thought. If he is somehow able to meet that challenge, you may be pleasantly surprised. There are inevitable and unavoidable road bumps and pot holes in this process. We cannot control that, but we can control how we respond to them.

Your adult son will need continuing support and guidance, some of it from experienced professionals to continue his social development. While this may pose a financial strain, the long term benefits usually outweigh the cost of not getting him this support.

It’s a long and winding road to launch an autistic child out into the real world. It’s hard to know at any given moment what to accept and what to work on. A parent’s job never ends—it just changes. Give yourself a well-deserved pat on the back for getting this far. Take good care of yourself as well. 
 
 
Resources for parents of children and teens on the autism spectrum:
 

==> Videos for Parents of Children and Teens with ASD
 
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Strategies for Transforming ASD Meltdowns into Moments of Connection

Autism Spectrum Disorder (ASD) is a multifaceted neurological condition influencing how individuals interpret the world around them and how ...