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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 .

Post your comment below…
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Individual Educational Plan {IEP}: Common Mistakes to Avoid


There is probably no process as frustrating for parents and educators alike as the IEP process. As a team effort, the IEP process is designed to help develop a program that is in the best interest of the child with ASD or [High-Functioning Autism]. All too often, the schools experience a lack of resources or have other challenges, which leaves the parent feeling that she is not receiving the support that is needed.

There are several common mistakes parents and teachers make when creating an IEP (or going through the IEP process). These include the following:

1. The parent signs the IEP when she doesn't totally agree with it.

Never sign an IEP at the meeting, especially if you don't agree with it. A verbal commitment that "we will work out the fine details later" is not binding, but your signature is. Remember that you have three days to review the IEP before signing it. It is always a good idea to take the IEP home and review it one more time, even if you think that everything is fine.  Never feel pressured into signing an IEP!

2. The short-term goals will not meet long-term goals.

If a specific long-term goal is agreed upon, make sure that the short-term goals adequately support progress towards the long-term goal.

3. The parent fails to review a preliminary IEP.

Without a preliminary look at what is being proposed for your ASD youngster, your first opportunity to see the IEP is in the IEP meeting where you are expected to agree to - and sign - the IEP. This puts you in an unfavorable position, because you can feel pressured to agree to items without having time to really think through their implications. Always ask for a preliminary copy prior to the IEP meeting, and never feel like you have to sign at the meeting.

4. The IEP contains goals that cannot be measured.

This is the most common mistake made when creating IEPs. It is easy to make - and accept - overly generalized goals and achievement objectives and believe they are acceptable. Many IEPs contain goals and objectives like, "...will improve letter recognition." This is a vague goal which can be claimed as "achieved" with very little progress actually having been made. A better goal would be something like, "...will recognize 9 out of 10 random letters shown, 4 out of 5 times." This is specific and measureable.

There may be times when you will not agree with an IEP. All schools have a due process procedure you can follow that will progressively escalate your complaint through the appeals process. If you can’t agree on your IEP, the school will provide you the information and steps you need to begin the due process procedure.

Many moms and dads find the assistance of an advocate or attorney to be an invaluable tool in their dealings with IEPs and education issues. The decision to utilize an advocate or attorney is a personal decision, but one that has many merits.

The IEP process is critical to the educational success of the child. Parents and educators need to develop an IEP process that (a) enables both parties to feel as though their concerns are heard, and (b) ensures that the child's needs are being met.  
 
 


 
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Calming Techniques for Kids on the Autism Spectrum

"How do you deal with an autistic child (age 5) who frequently has severe temper tantrums whenever she doesn't get her way, for example, can't play here favorite game 24/7?"

In order to understand what calming techniques will work with your ASD (high functioning autistic) child, you will first need to determine what things irritate her and have some understanding of the context in which she is throwing a tantrum. 
 
While she is calm, make sure your child knows what the expectations are, but don't confuse the issue with trying to talk to her about things at a time when she is already upset.

Here's a basic plan:
  1. Recognize the signs (e.g., facial expressions) and triggers (e.g., transitioning from one activity to the next) that your child is becoming upset, and intervene prior to a tantrum. Try to redirect her to an alternative activity, something that she enjoys.
  2. If "redirecting" does not stop the tantrum, tell her to stop. Don’t add any extras, just STOP (calming and directly).
  3. If she still doesn't stop, remove her from the area in which the tantrum is taking place. Provide some physical redirection to an area where she can calm down. It can be very effective to call this her SAFE place. It may include a bean-bag chair where she can sit. But, eliminate any extras in the area, such as toys or other preferred items. 
  4. If she doesn’t voluntarily go to her SAFE place, physically escort her there.
  5. Tell her she must be calm for 5 minutes before she can get up.

This may seem like a overly simple process in order to deal with what may be a challenging behavior. The key is to be consistent so that your child will always know what is coming. If the child is in school, try to provide this program across all environments. 

It is amazing how many children on the autism spectrum will actually learn to go to their SAFE place independently as a way for them to control themselves. (Tip: They LOVE structure and routine!) You want your child to self-monitor her behavior, and you want to show her that you believe she has the ability to calm herself down.


 COMMENTS:

•    Anonymous said... We also struggle with tantrums and even rage with our 8 year old son. I agree with setting clear limits. Zoe, can you give me an example of emotional regulation? Im not sure i know what that means.
•    Anonymous said... Trying to stop it before my 6yr son goes over the hill has not been easy for me,
•    Anonymous said... Let me know...my 10yo aspie is getting too aggressive for me.
•    Anonymous said... Lately its been take the flight system before the storm hits, I ask him whats wrong or what happend, and sometimes he can express bit other times it break or throw things,,,
•    Anonymous said... get some some books or flyers on how to calm down, even picture stories. During calm days talk about other options for dealing with there own stresses better, taking a deep breath, counting to 10, walk away, dive into a bean bag, give them alternative options, ask them to use words to tell you what's bothering them. Then at times of tantrum calmly remind them of the other options, guide them, it will take time. You have to also understand why the tantrum is taking place as you may deal with different tantrums in different ways, for example is it too much sensory stimuli, boredom, just plain refusal, what happened before the tantrum etc. My son used to have very long tantrums, we worked on this for about 2+ years, he still has some but they have reduced considerably in how often and for how long. It took a lot of consistency, guidance and repetition to see improvement, it won't happen overnight. I am not talking about the typical kind of tantrums that you see in kids, children with HFA/Aspergers can, as you know, have tantrums that are on a whole other level.
•    Anonymous said... Assertive limit setting works for me - acknowledging and validating the childs feelings and difficulty but setting firm limits around what kind of behaviour is and isn't acceptable. We also work on emotional regulation and perspective-taking as a backdrop to this.

Post your comment below…

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Characteristics of Females with ASD Level 1

"We think our daughter may have a form of autism due to her severe shyness, excessive need to have things just so, certain rituals she has with food, major touch sensitivity, a lot of anxiety, just to name a few. What are some of the signs to look for to help us decide if an assessment is in order?"

Females with ASD, or High-Functioning Autism. often present with a unique set of characteristics that can make diagnosing their disorder very difficult. In addition, their strengths often mask their deficits.

There has been considerable discussion among professionals about the way girls with ASD demonstrate their major characteristics. Some girls have obvious social difficulties, whereas others appear to have excellent skills because they imitate the behaviors of others (often without understanding them).



There are many females who do not receive a diagnosis, possibly because, compared to males, (a) they have fairly good social skills (particularly when interacting with adults in a one-to-one situation), (b) their special interests are different, and (c) their clinical presentation is different.

Sometime during childhood, a female with autistic traits will begin to know she is different compared to her peers. For example:

1. Due to adopting an alternative persona, she may begin to have problems of self-identity and low self-esteem

2. Due to observing and analyzing social behavior and trying not to make a social error, she may become emotionally exhausted

3. During the stress of adolescence, she may develop routines and rituals around food and a special interest in calories and nutrition that develops into the signs of an eating disorder

4. Her interests may be different to her peers in terms of intensity and quality of play

5. She may be an avid observer of human behavior and try to decipher what she is supposed to do or say

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism
 
6. She may be extremely sensitive to the emotional atmosphere at a social gathering

7. She may be like a chameleon, changing persona according to the situation

8. She may be more likely to apologize and appease when making a social error

9. She may be overly well-behaved and compliant at school so as not to be noticed or recognized as a different.

10. She may be vulnerable to “peer predators” who take advantage of her social immaturity

11. She may become increasingly aware of her social confusion and frequent faux pas, and thus prefer to be on the periphery of social situations

12. She may enjoy living in a fantasy world and creating a new persona

13. She may escape into the world of nature, having an intuitive understanding of animals, but not people

14. She may fear that her “true self” must remain secret because she is defective, thus she is almost always acting like someone else

15. She may have a pet that she views as a loyal friend

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

16. She may have a single - but intense – friendship with another female who may provide guidance for her in social situations

17. She may have a strong desire to collect and organize her toys (e.g., dolls) rather than to share her toys with friends

18. She may have an aversion to the traditional concept of femininity

19. She may have an encyclopedic knowledge of specific topics

20. She may have an intense interest in reading and escaping into fiction

21. She may have an interest in ancient civilizations to find an old world in which she would feel at home

22. She may have an interest in other countries (e.g., France) where she would be accepted

23. She may identify with a fictional character (e.g., Harry Potter), who faces adversity but has special powers and friends

24. She may not be interested in the latest craze among her peers to be 'cool' and popular

25. She may not identify with her peers

26. She may not play with her toys in conventional ways

27. She may not want to play cooperatively with her peers

28. She may prefer non-gender specific toys (e.g., Lego)

29. She may prefer to play alone so that she can play her way

30. She may prefer to play with males, whose play is more constructive and adventurous than emotional and conversational

==> Teaching Social Skills and Emotion Management to Children and Teens with ASD

31. She may suffer social confusion in silence and isolation in the classroom or playground, but she may be a different character at home

32. She may talk to imaginary friends, or write fiction at an early age

33. She may think that the way her peers play is stupid and boring

34. She may use imaginary friends that can provide companionship, support and comfort when she feels lonely

35. She may use passive-aggressive behaviors in order to control her family and/or social experiences


  
As young girls, many (but not all) females with ASD:

1. Apologize frequently and want to please others

2. Are an expert on certain topics

3. Are determined

4. Are honest

5. Are involved in social play, but are led by their peers rather than initiating social contact

6. Are kind

7. Are misunderstood by peers

8. Are more able to follow social actions by delayed imitation because they observe other kids and copy them, perhaps masking the symptoms of autism
 
9. Are more aware of - and feel a need to - interact socially

10. Are perfectionists

11. Are so successful at "faking it" that they only come to the attention of a therapist when a secondary mood disorder emerges

12. Are specially gifted in the areas of mathematics and engineering

13. Are very good at art

14. Are visual thinkers

15. Are well-liked by adults

16. Become a target of teasing

17. Do not ‘do social chit chat’ or make ‘meaningless’ comments in order to facilitate social communication

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

18. Enjoy solitude

19. Have a faster rate of learning social skills than males

20. Have a single friend who provides guidance and security for them

21. Have a special interest that is more likely to be unusual in terms of intensity rather than focus

22. Have difficulty knowing what someone else may be thinking or feeling

23. Have difficulty making friends

24. Have difficulty managing feelings

25. Have difficulty showing as much affection as others expect

26. Have difficulty taking advice

27. Have difficulty with writing skills

28. Have extremely detailed imaginary worlds

29. Have imaginary friends

30. Have interests that are very similar to those of neurotypical girls (e.g., animals, dolls, classical literature), and therefore are not seen as unusual

31. Have what is classified as a "male brain"

32. Make reliable and trustworthy friends

33. Mimic or even try to take on all the characteristics of someone they are trying to emulate

34. Notice sounds that others do not hear

35. Read fiction to help them learn about inner thoughts, feelings and motivations

36. Show little interest in fashion

37. Speak their minds (sometimes to the point of being rude)

38. Still need to be directly taught certain social skills

39. Try to understand a situation before they make the first step

40. Use doll play to replay and understand social situations

By

Repetitive Routines and Rituals in Kids with Autism Spectrum Disorder [ASD]

Some kids with ASD [High-Functioning Autism] develop a resistance to (or fear of) change, that then involves being rigid in their approach to their environment. Insistence on sameness, routines and rituals begin. For example:
  • Particular silverware and plates must be used or the ASD youngster refuses to eat or drink.
  • Objects may be stacked or lined up in a repetitive manner.
  • Certain routes must be followed to and from familiar places.
  • Certain items must be placed in particular places and not moved.

Confusion about coping in a world that is overwhelming influences this behavior, so the youngster with ASD responds to this uncertainty by being in control of their immediate environment, the objects in that environment, and the people in it. Repetitive motor mannerisms may occur when some kids are excited, anxious, or worried. For others, sensory sensitivities and physical enjoyment may drive repetitive jumping, arm flapping, twiddling of fingers in front of their eyes and covering ears and eyes with their hands.



Repetitive behaviors and mannerisms in ASD children is a somewhat neglected area of research. In the past, these behaviors were associated with lower levels of functioning, because repetitive motor mannerisms are also seen in kids with intellectual disability who do not have autism. These behaviors were also thought to increase during the preschool years. There is now some evidence that repetitive motor mannerisms develop differently to insistence on sameness and these behaviors follow different paths over time.


Restricted and repetitive behaviors show different patterns of stability in autistic kids based partly on the ‘subtype’ they belong to. Young kids with low NVIQ (i.e., non verbal IQ) scores often have persistent motor mannerisms. However, these behaviors often improve in kids with higher nonverbal IQ scores. Many kids who do not have “insistence-on-sameness behaviors” at a young age acquire them as they got older, and some kids who had these behaviors sometimes loss them. 

What should moms and dads do about routines, rituals and repetitive motor mannerisms?

First, ask yourself the questions: “How much of a problem is it?” and “”Who for?” The answer is often that these behaviors are a problem for the mother or father, educators and counselors rather than the youngster himself (who is quite happy to be preoccupied in these ways). Therefore, it is unlikely that the youngster will want to change his behavior. The rules of thumb when making decisions about whether or not to intervene or change routines, rituals and repetitive motor mannerisms are to ask yourself:
  • Will the behavior be acceptable in 5 years time?
  • Does the behavior interfere with or preclude participation in enjoyable activities and an education program?
  • Does the behavior increase the likelihood of social rejection or isolation?
  • Does the behavior endanger the youngster or others?

In preschoolers with ASD, adherence to non-functional routines and rituals and displaying repetitive motor mannerisms may be judged inappropriate because they fall into one or more of these categories, or may be tolerated by the family and others and are not seen as problematic.


The most successful treatments for ASD children with repetitive rituals are behavioral therapy and medication. Behavioral therapy, also known as cognitive-behavioral psychotherapy (CBT), helps children learn to change thoughts and feelings by first changing behavior. It involves gradually exposing children to their fears, with the agreement that they will not perform rituals, to help them recognize that their anxiety will eventually decrease and that no disastrous outcome will occur.

Some treatment plans involve having the youngster "bossing back" the repetitive rituals, giving it a nasty nickname, and visualizing it as something he can control. Over time, the anxiety provoked by certain unwanted stimuli in the environment and the urge to perform rituals gradually disappear. The youngster also gains confidence that he can "fight" repetitive rituals.

Repetitive rituals and routines can sometimes worsen if it's not treated in a consistent, logical, and supportive manner. So it's important to find a therapist who has training and experience in treating this issue. Just talking about the rituals and fears has not been shown to help repetitive rituals, and may actually make it worse by reinforcing the fears and prompting extra rituals. Family support and cooperation also go a long way toward helping a youngster cope with repetitive rituals.

Many children can do well with behavioral therapy alone while others will need a combination of behavioral therapy and medication. Therapy can help your youngster and family learn strategies to manage the ebb and flow of symptoms, while medication often can reduce the impulse to perform rituals.

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