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How To Be Your ASD Child's Greatest Advocate

"We just got a diagnosis of high-functioning autism for our 6-year-old son. My husband and I are having two very different reactions to this recent news. I'm rather relieved to know that our son doesn't have a more serious problem (relative to other disorders like bipolar, which is what we suspected originally), but my husband views our son's behavior as "rebellion" and "laziness." How can we support our son, but not let his "disorder" be an excuse for behavior problems or lack of effort?"

There is a series of stages that parents go through when they learn that their child has High-Functioning Autism (HFA). Often there is an expected confusion when the child doesn’t seem to conform to “normal” childhood standards. When the diagnosis is made, a sense of grief can occur with the loss of the anticipated “normal child.”

Some parents remain in that stage and can't see the positive aspects their child brings to the family and the world in general. Other parents are relieved to know that there is a name for the "difference" in their child and that this "disorder" has nothing to do with "bad parenting."

Those parents that choose to see what their child can bring to the world will begin to be an advocate for him or her with those who understand less about the condition than they do. When parents become their child's greatest advocate, others can interact with the child in a more informed way -- and the child him/herself will experience life in a positive dimension.





The road to becoming your child’s greatest advocate begins by being as informed as possible about the condition. There are dozens of books, some more scholarly than others, that parents can read to help themselves understand that this disorder was not their fault and to learn patterns of behavior they have come to see in their child but didn’t know what they meant.

The second part about being an advocate is to pay careful attention to him or her. Learn your child's idiosyncrasies and pay attention to the things that work for him or her, along with the things that don’t work. If the child has certain obsessions or compulsions, understand what they are and find out ways to get around them, if needed and if possible.

The most important people to be your child’s advocate with are your family, including your extended family, daycare providers and teachers. They need to be as comfortable with dealing with your child as possible.

Teachers and even daycare providers need to know how best to teach the child and how to handle tantrums or behaviors that can be hard to control. When these types of people understand the child, it often makes the difference between a good education and a poor one for a child that most likely has the potential to do just as well -- or even better -- than his or her peers. 




COMMENTS:

•    Anonymous said... it took me a long time to come around to the realization that my son had aspergers. I thought he was just stubborn and wasn't getting the best people around him. My husband was more concerned that he was autistic than I was. I didn't really know what Aspergers/HFA was. Now that we are on the same page, everything is going along ok. Still dealing with son's behavioral issues but it helps to be on the same page.
•    Anonymous said... It will take time research research research my daughters psychologist encouraged me to do my own and continue to I read up on it daily it is hard I struggle she was diagnosed at 10 it makes it challenging when they are going through puberty.I can see where you would have thought bipolar I initially thought the same thing they react on impulses their is no future in their mind so threatening to take something away diesnt work everything is in the now.One has to emotionally remove themselves from the situation and focus on positive reinforcements instead its not easy but with a good support system psychologists, psychiatrists, family friends support groups their are ways they can learn to cope with their behaviors related to Aspergers
•    Anonymous said... my advice......get counciling for the two of you....you need to be on the same parenting page with this.
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•    Anonymous said... My daughter was also diagnosed at 6 and I see it as a gift. She is so special and not generic like the other kids at school. I have great support at her school and they also wouldn't change her for the world. Since finding out I truly understand her and we don't call it a disability it's her special gift. She is very artistic and loves to paint and create so we do a lot of that and it helps her in other aspects of life. What does your son love to do?
•    Anonymous said... My son's doctor gave me the best advice- he said: "You have to wrap your mind around his, don't try to get his mind wrapped around yours."
•    Anonymous said... not easy... though some people say they manage it...
•    Anonymous said... Oh my goodness ... my son was diagnosed at 6 as well. I too was relieved to receive the diagnosis - it was so hard not knowing what was going on in my little man's head. Maybe just remind your husband that your son see's the world so differently from you and he doesn't process emotions the same. You are going to learn so many amazing things from your son ... I promise you ... I feel so blessed to get to see things through my son's eyes each day. Good luck to you all
•    Anonymous said... Once my son was old enough to really understand Aspergers and do some of his own research, I explained it all to him. And I made it very clear this was NEVER to be an excuse to not excel in life. He's 15 and doing great. The issues are there, but we all manage and understand them better and he is treated no different than any of the kids (he is the oldest of 4 boys), with the exception if things like clothes and specific pencils he must use, etc. He is expected to get decent grades, have chores, be responsible. He has his driving permit now and shows more and more awareness with each drive. You will see many changes over the years...just treat him equally with the minor changes he requires to fit HIS world.
•    Anonymous said... Strongly recommend a parenting support group for both of you! Hearing my son's diagnosis (also HFA) was terrifying for me. Hearing other's stories was VERY helpful.
•    Anonymous said... This is very common, my suggestion is that you and your husband will need to learn how to communicate to each other. You will both need to learn how to be very honest and open with feelings, emotions and parenting ideas. You will need to find a parenting style that you both like that suits the child as they need different parenting skills to a normal child. They need better explanations on what and why they were naughty. Look up social stories, they help autistic children to learn most situations.
*  Anonymous said... We're just starting down this road too. We're doing the 'research, research, research' that someone mentioned above, but we're trying to do it together, for example one of us does the dishes while the other one reads out loud from whatever book we're currently working through. That way we can talk about it as we're coming across things that are new to us, like the idea that meltdowns can't be 'disciplined' in the same way that rebellion or disobedience should be. We're in the process of working out what the triggers are for our daughter's meltdowns so that we can be more aware of how she's likely to react to things and therefore try to minimise her reaction, but also so that we can talk to her about the way she felt (after she's calmed down) and begin to give her other more acceptable ways of dealing with sensory and communication problems. I think the key ingredient is going to be time and perseverance, and an openness on our part as parents to see the world from our child's perspective rather than our own. All the best. 

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Meditations for People on the Autism Spectrum Who Suffer from Chronic Anxiety

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Calming Techniques for High-Functioning Autistic Children (ASD Level 1)

"What are some things I can do as a parent of a 6-year-old autistic son (high-functioning) to help him calm down when he has a temper tantrum (which usually results in him hurting himself or destroying something in the house)? He just started the first grade, and his teacher is already having issues with his behavior as well."

In order to understand what calming techniques will work, you will first need to determine what things excite and upset your high-functioning autistic (HFA) son, and have some understanding of the context in which he is throwing a tantrum.

1. Make sure your child knows what the expectations are, and do not confuse the issue with trying to talk to him about things at a time when he is already upset.

2. Try to redirect him to an alternative activity -- something that he enjoys. 

3. If this does not stop the tantrum, tell him to stop. Don't add any extras, just STOP -- calmly and directly.

4. If he still doesn't stop, provide some physical redirection to an area where he can calm down. It can be very effective to call this his SAFE place. It may include a bean-bag chair, where he can sit. But, eliminate any extras in the area, such as toys, or other preferred items. If he doesn't voluntarily go to his SAFE place, physically escort him there.


5. Tell him he must be calm for 5 minutes before he 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 he 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 HFA children will actually learn to go to their SAFE place independently, as a way for them to control themselves. We want them to self-monitor their behavior and show them that we believe they have the ability to calm themselves down.
 

There are no easy and quick fixes to reduce or eliminate severe behavioral problems (e.g., self-injury, aggressiveness, severe tantrums and destructiveness). There may be, however, a few fixes that may not require an incredible amount of time and effort to implement:

1. One possible reason for behavioral problems may be difficulties in receptive language. HFA kids often have poor auditory processing skills. As a result, they often do not understand what people are saying to them (i.e., they hear the words but they do not understand what the words mean). The child’s lack of understanding can lead to confusion and frustration, which can escalate into behavior problems. Visual communication systems can be useful in teaching and in informing kids of what is planned and what is expected of them.

2. Behavioral problems may also be due to difficulties in expressive language. In fact, many researchers feel strongly that the majority of behavioral problems are simply due to poor expressive communication skills. There are numerous communication strategies, such as the Picture Exchange Communication System and Simultaneous Communication (i.e., using speech and sign language at the same time) which can be used to teach expressive communication skills.

3. Food allergies are an often overlooked cause of behavior problems. Some kids may have red ears, red cheeks, or dark circles under their eyes. These are often signs of food allergies. The most common allergens are dairy and wheat products, food preservatives, and food coloring. Some of the symptoms associated with food allergies are headaches, tantrums, feelings of nausea or spaciness, and stomach aches. As a result, the child is less tolerant of others and he/she may be more likely to strike out at others or have a tantrum.

Since many of these kids have poor communication skills, the parent and/or teacher may not be aware that the child is not feeling well. The child should be tested if food allergies are suspected. If the child tests positive for certain foods, then these products should be eliminated from his/her diet.

4. If the child’s behavior is worse at school but not at home, there are many possible reasons, such as a lack of consistency. There are, however, several physical causes that should be considered. Two possible causes, which are seldom considered, are cleaning solvents and florescent classroom lighting. Janitors often use powerful chemicals to clean the classroom. Although the smell may be gone by the next day, the chemical residue may still be in the air and on surfaces. Breathing these chemicals may affect sensitive people. During the day, students often place their hands and face on the tables and floors, and these chemicals can eventually wind up in the child’s mouth and alter brain functioning and behavior. Many parents and teachers wipe the students’ desks with water or a natural cleaning solution prior to class each morning, and they have reported rather remarkable improvements in the students’ behaviors.

Florescent lighting, which is the most common lighting used in classrooms, may also affect behavior. Many adults with autism report that florescent lights bothered them greatly during their school years. In addition, U.C.L.A. researchers observed more repetitive, self-stimulatory behaviors under florescent lighting compared to incandescent lighting. Teachers may want to turn off the florescent lighting in their classroom for a few days to see if there is a decrease in behavioral problems for some or all of the students. During this trial period, the teacher can use natural light from the windows and/or incandescent lights.
 

5. In many instances, a behavior problem is a reaction to a request or demand made by a caregiver/teacher. The child may have learned that he/she can escape or avoid such situations, such as working on a task, by ‘acting up.’ A functional assessment of the child’s behavior (i.e., antecedents, consequences, context of the behavior) may reveal certain relationships between the behavior and the function the behavior serves. If avoidance is the function the behavior serves, the caregiver/teacher should follow through with all requests and demands he/she makes to the child. If the child is able to escape or avoid such situations, even only some of the time, the behavior problem will likely continue.

6. It is also important to consider the child’s level of arousal when formulating a strategy to treat behavioral problems. Sometimes behavioral problems occur when the child is overly excited. This can occur when the child is anxious and/or when there is too much stimulation in the environment. In these cases, treatment should be aimed at calming the child.

Some popular calming techniques include: vigorous exercise (e.g., a stationary bicycle) which would act as a release of their high excitement level, vestibular stimulation (e.g., slow swinging), and deep pressure (e.g., Temple Grandin’s Hug Machine). In some cases, behavioral problems may be due to a low level of arousal such as when the child is passive or bored. Behaviors such as aggression and destructiveness may be exciting, and thus appealing, to some of these kids. If one suspects behavior problems are due to underarousal, the child should be kept busy or active. Vigorous exercise is another good way to increase arousal level.

7. Many families are giving their children safe nutritional supplements, such as Vitamin B6 with magnesium and Di-methyl-glycine (DMG). Nearly half have reported a reduction in behavioral problems as well as improvements in the child’s general well-being. Sometimes powerful drugs are prescribed to autistic kids to treat their behavior. Interestingly, the most commonly prescribed drug for autistic children is Ritalin. A survey conducted by the Autism Research Institute in San Diego revealed that 45% of 2,788 parents felt that Ritalin made their child’s behavior worse and only 20% reported improvement (27% of parents of autistic children felt that Ritalin made no difference).

8. Occasionally a child may exhibit a behavior problem at school but not at home, or vice versa. For example, the parent may have already developed a strategy to stop the behavior at home, but the teacher is unaware of this strategy. It is important that the parent and teacher discuss the child’s behavioral problems since one of them may have already discovered a solution to handle the behavior.

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

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

  
PARENTS' COMMENTS:

•    Anonymous said... A weighted blanket. Or a calm room at school.
•    Anonymous said... At home, we started with a lycra style sensory swing. Then once he sort of brought it down a notch we started sending him to his room (most of our meltdowns were also correlated with bad behavior), in his room we have a heavy comforter, a bean bag, a DVD player with story DVDs and we recently added a lycra sheet on his bed. We set the timer based on his offense and willingness to go to his room, he usually first goes right under his bean bag then he will usually lay on the bean bag with the heavy comforter and watch a story, or read a book. At school, we had to change programs.
•    Anonymous said... change is very difficult for them,does he have a therapy aid at school?
•    Anonymous said... Failing that a tent in the corner of the classroom?
•    Anonymous said... For my son, "tantrums or meltdowns" were usually the result of some anxiety that he didn't know how to handle. Figuring out what the problem was and teaching him to deal with it was helpful but was a process. My son needed to be able to leave the classroom which was very stimulating. Sometimes the hallway or even the OT room. We found that a certain book that played music worked to calm him at home and as he got older he started using it in his own. Sometimes I would Just hold him tight. If you pay close attention you will be able to figure out what works for him. Listen to your gut and remember that no one knows and loves him like you. It was very hard for our family at that age. He is 13 now and things have gotten so much better. There is hope!
•    Anonymous said... Get the best professional help while he is a little boy.
•    Anonymous said... Most meltdowns are a result of anxiety/stress/upsets. Fix the cause (whatis upsetting the child) and the meltdowns will ease off. Significantly.
•    Anonymous said... My 7yr just finished a 10 session program with his OT called the Alert Program - How Does Your Engine Run. It was awesome and he is sooo much better now for it. It helps the kids to recognise how their body is feeling and what types of things help them to get their 'engine' running just right. I can't say enough about it - absolutely amazing!!! My son would yell, throw things, hurt kids, bang and slam furniture/doors etc. We get the occasional growl or stomping feet when he is REALLY worked up, but the majority of the time we can nip it in the bud with what we both learnt at these sessions
•    Anonymous said... My son's teachers allowed him to pick a place in the classroom that he could go to when he felt upset. It seemed like it helped a lot. One year it was under the row of "cubbies" and coat hooks. It was usually only for a few minutes, but seemed to help him. Now that he is a little older they have a resource room between the classrooms and he can sit in there until he calms himself.
•    Anonymous said... Needs a good routine at school, talk to teacher and tell her parts of your routine at home, All about routine and prompts. I always use the clock, when change occur, always a quick 10 minute reminder, AS children love knowing what's set out for them in the day, as you know they don't really like change. Sleep is another important issue. I hope this has helped you.
•    Anonymous said... Prevention.
•    Anonymous said... Rescue Remedy!!!!

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How can children on the autism spectrum cope with anger and depression?

"I have a 6 y.o. son (high functioning autism). When he gets upset, he throws his head back and hits his head on the floor or anything he is near. I am so worried about him. He also won't play with other children, he throws things at them ...it's so hard! He is starting to have these fits at school as well. He also seems somewhat depressed a lot of the time. We didn't have these issues prior to elementary school. Any helpful advice would be greatly appreciated. I just want my happy child back."

Unfortunately, anger and depression are both issues more common in ASD or High-Functioning Autism (HFA) than in the general population. Part of the problem stems from a conflict between longings for social contact and an inability to be social in ways that attract friendships and relationships.

Even very young kids on the autism spectrum seem to know that they are not the same as other kids, and this gets emphasized in the social arena of the classroom. Many cases of depression, in fact, begin in elementary school (usually due to bullying and being an "outcast"). Anger, too, stems from feeling out of place and being angry at one’s circumstances in life.

Ideally, the focus should be on prevention and on helping HFA children develop communication skills, social skills, and develop a healthy self-esteem. These things can create the ability to develop relationships and friendships, lessening the chances of having issues with anger or depression.

Anger outbursts can also occur when rituals can’t get accomplished or when the child's need for order or symmetry can’t be met. Frustration over what doesn’t usually bother others can lead to anger and violence. This kind of anger is best handled through cognitive-behavioral therapy that focuses on maintaining control in spite of the frustration of not having one's needs met.

Communication and friendship skills can be taught to HFA children, teenagers, and even grown-ups. Mastering these skills can eliminate much of the social isolation these individuals feel. These skills can also avert - or reverse - depression and anger symptoms. (Click here for more information about helping with friendship skills.)

In worst case scenarios, some kids on the spectrum become so depressed that they may commit suicide (usually in adolescence). Others become angry enough that they get violent and hurt - or kill - others as a result. The challenge becomes recognizing these individuals (who are the exception by the way) before they do harm to self or others and getting them into therapy so that tragedy can be avoided.



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

 
COMMENTS:

•    Anonymous said...I'm so sorry. I wish there was a special place for our high functioning kiddos because they are more aware of the social stimulation and expectations around them. My son was forever changed by school expectations!! The anxiety and stimulation is just too much....look for options or try medication for anxiety. That is what helped my son. He started hiding in bushes and refusing to return to class in second grade. It is frustrating getting phone calls from school! I feel for you.
•    Anonymous said...Try to get an IEP for him at school ASAP. His stress and depression is likely due to a large amount of forced socialization that didn't occur before Kindergarten. Aspergers children cannot be forced into interaction, they will only melt down if you do. Have your school evaluate your son to see what options are available. If possible, ask his teacher to create a space for him in the classroom that he can retreat to if need be. This will greatly reduce his stress and any risk to other children. My son had similar problems when he started school last year. He had so many suspensions I lost count. He now has a class that he goes to once per week that teaches social skills, and he has improved so much! It is absolutely worth looking into. Contact the school guidance counselor. They will know the appropriate first step in your area.
•    Anonymous said...Well I would have his meds looked at. It gets harder to get them under control but really needed. Some schools aren't much help.

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