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" In a box not a bottle" Asperger's revealed


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This refers to the Aspergers child’s rigidity, obsessions, perseverations, and need for structure/routine/order.

 

A. Rules are very important as the world is seen as black or white:

Takes perfectionism to an extreme — one wrong answer is not tolerable, and the child must do things perfectly

Has difficulty with any changes in the established routine

Has a set routine for how activities are to be done

Has rules for most activities, which must be followed (this can be extended to all involved)

 

B. The child has few interests, but those present are unusual and treated as obsessions:

Patterns, routines, and rituals are evident and interfere with daily functioning (note: this is driven by the child’s anxiety; the world is confusing for her; she is unsure what to do and how to do it; if she can impose structure, she begins to have a feeling of control)

Has developed narrow and specific interests; the interests tend to be atypical (note: this gives a feeling of competence and order; involvement with the area of special interest becomes all-consuming)

Displays rigid behavior:

Has unusual fears

Has narrow food preferences

Carries a specific object

Plays games or completes activities in a repetitive manner or makes own rules for them

Insists on driving a specific route

Arranges toys/objects/furniture in a specific way

Is unable to accept environmental changes (e.g., must always go to the same restaurant, same vacation spot)

Is unable to change the way she has been taught to complete a task

Needs to be first in line, first selected, etc.

Erases over and over to make the letters just right

Colors with so much pressure the crayons break (e.g., in order to cover all the white)

Only sits in one specific chair or one specific location

Cannot extend the allotted time for an activity; activities must start and end at the times specified

Selects play choices/interests not commonly shared by others (e.g., electricity, weather, advanced computer skills, scores of various sporting events) but not interested in the actual play (note: this could also be true for music, movies, and books)

Has narrow clothing preferences

Feels need to complete projects in one sitting, has difficulty with projects completed over time

 

C. Failure to follow rules and routines results in behavioral difficulties. These can include:

Anxiety

Tantrums/meltdowns (e.g., crying, aggression, property destruction, screaming)

Non-compliant behaviors

Increase in perseverative/obsessive/rigid/ritualistic behaviors or preoccupation with area of special interest, engaging in nonsense talk

Inability to prevent or lessen extreme behavioral reactions, inability to use coping or calming techniques

Emotional responses out of proportion to the situation, emotional responses that are more intense and tend to be negative (e.g., glass half-empty)

 

Children with Aspergers and High-Functioning Autism have very few things that really interest them, but those interests are very important and may help them alleviate anxiety. They also cope better when there are set routines in their lives. Because change causes anxiety, Aspergers children will want to live by rigid rules that they construct for themselves. They want their own rules so that they can be the “king” or “ruler” -- and they have a difficult time understanding why society has a different set of rules.

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Autism spectrum disorder affects children of all races and nationalities, but certain factors increase a child's risk. They include:

Your child's sex. Boys are about four times more likely to develop ASD than girls are.

Family history. Families who have one child with ASD have an increased risk of having another child with the disorder. It's also not uncommon for parents or relatives of a child with ASD to have minor problems with social or communication skills themselves or to engage in certain behaviors typical of ASD.

Other disorders. Children with certain medical conditions have a higher than normal risk of ASD or ASD-like symptoms. Examples of these conditions include fragile X syndrome, an inherited disorder that causes intellectual problems; tuberous sclerosis, a condition in which benign tumors develop in the brain; the neurological disorder Tourette syndrome; and Rett syndrome, a genetic condition occurring almost exclusively in girls, which causes slowing of head growth, intellectual disability and loss of purposeful hand use.

Extremely preterm babies. Babies born before 26 weeks of pregnancy may have a greater risk of ASD.

Parents' ages. There may also be a connection between children born to older parents and ASD, but more research is necessary to establish this link.

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Asperger's is called the invisible disability. They look perfectly typical many don't have verbal tics or physical ones. They look completely and utterly typical. There is a box on our disability form that says for significant impairment you must be disabled in someway 90% of the time. To which the psychologist checked yes. There is also a box for is this a lifetime impairment with no hope of recovery to which the psychologist checked yes.

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I sometimes think that people don't fully understand how debilitating ASD can be. In a way, I think it's like being born without a certain sense, like being born blind or deaf. We take our social skills for granted but in reality, we are a very social species and those skills are imperative for us to function. I can't imagine being born without the ability to read people, or even to start a conversation. My sister had the language development halt and didn't talk for years. I try to explain to people that having ASD isnt about being awkward alone. Some people self diagnosed and think they have ASD because they have mild social anxiety. It's so much more than that. It can be really debilitating.

 

It really rings true with me that they call it the "invisible" Disorder.

 

Glad you made this journal Vic. I will share my observations too.

 

 

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Thanks Fudgie I appreciate your support.

 

People really do take their typical sociality for granted. And we learn to be social by watching other people but these children do not learn to be sociable by watching people because they don't mimic. And if you can't mimic and can't pick up on cues you can't learn it. It has to be specifically taught to you. Other children learn to be sociable automatically these children don't. It is not just being shy.

 

Another problem that I've had with people is they don't understand the difference between a temper tantrum and an autistic meltdown. In a temper tantrum the child stops whenever they get what they want or they see they failed to control. And autistic meltdown is nothing like that. And autistic meltdown is like when your computer crashes and just goes absolutely crazy. Basically they are just so overwhelmed that their brain just stops functioning pretty much all together. And they don't care who's watching and they don't care who's doing what for them and it is not stopped because they get a cookie. It is not about trying to control their parents or anybody else.

 

Sometimes I think a lot of people just don't want to learn about this disorder and don't care. I have had people tell me to just smack him. And I felt like shoving their own shoe down their throat. I have actually told a few people to bleep off.

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Yeah, definitely not a temper tantrum. I have worked with autistic children in the hospital I know that when they have meltdowns, I just remain calm and leave them alone for a while, let them sit and rock themselves and calm down. I don't touch or talk to them that much as they calm down because too much stimulation doesn't help. After I give them some time, I approach again and usually within several minutes, they are a lot better and return to their version of normal. Just have to let the computer "reboot".

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Yeah, definitely not a temper tantrum. I have worked with autistic children in the hospital I know that when they have meltdowns, I just remain calm and leave them alone for a while, let them sit and rock themselves and calm down. I don't touch or talk to them that much as they calm down because too much stimulation doesn't help. After I give them some time, I approach again and usually within several minutes, they are a lot better and return to their version of normal. Just have to let the computer "reboot".

Exactly. They need time to process. They process everything at a much slower speed than we do.

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Yeah and it's not a wonder. They perceive and process sensory information VERY differently than the rest of us. It's all very intense and harsh. that's why they get overwhelmed and need time.

 

Yes. For co-op my son is a teacher's assistant for grade one. When he comes home he's just completely rattled. He goes into his room shuts the door and he's in there for a few hours lining up his cards. I guess that is how he " stimms" or he paces a lot.

 

Another thing is he processes almost everything through his ears. It was a PD day today and when I finished work I took him out for lunch. I could see him absolutely avoid eye contact with everyone in the restaurant. When they passed by him he would just give them sideways look with his one eye. But other than that he avoids all eye contact with people he doesn't know. Then I went to the dollar store to get envelopes and he saw someone he knew from school. Usually he won't say hi or smile. Today he smiled. Then he turned to me and said I was polite right? You have always told me smiling is polite.

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I'm not sure why I don't have sound, but I'm going to google those trailers because I really want to watch them. Vic, did you see the movie about Temple Grandin starring Claire Danes. I thought she played the part very well. There is another woman with AS who writes and I so loved her book. I believe she has also written about adolescence and AS, but she mostly writes about females. Her name is Lianne Willey and then another name I can't remember. Her bio was great. Eventually she married very happily and has several children.

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I'm not sure why I don't have sound, but I'm going to google those trailers because I really want to watch them. Vic, did you see the movie about Temple Grandin starring Claire Danes. I thought she played the part very well. There is another woman with AS who writes and I so loved her book. I believe she has also written about adolescence and AS, but she mostly writes about females. Her name is Lianne Willey and then another name I can't remember. Her bio was great. Eventually she married very happily and has several children.

 

Hi SB,

 

If you can watch the biography , A Mother's Courage Talking Back to Autism that's where two of the clips came from. Right now it's on Netflix but I'm not sure if you have that.

 

No I never saw the movie about Temple.

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Sometimes people think because you can speak that you're social. This is not true. If you cannot use your language for reciprocity in a relationship then you have trouble being social . For instance the psychologist said my son offers very little spontaneous conversation. Very little give-and-take. He wants to talk about is favorite topic and very little else. In that way he shows little empathy. He has no inkling whatsoever that other people might not want to talk about his favorite topic. When he talks to us his favorite topic is the course of conversation 90% of the time. And this is why it is very hard for him to retain social relationships. So you can have language and not be social.

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Today I'm angry again that this wasn't diagnosed earlier. All the help out there is for little kids. Everything I look up of course has treatments for toddlers and young young kids. It seems almost everything out there would insult my son's age and intelligence. There is so very little out there for transitioning. I downloaded a toolbox from autism speaks but almost everything in there is for little kids.

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I hope this link works. This is to a book on adolescence and Asperger's by Lianne Holiday Willey. She and one of her daughters both have Asperger's. I read her book called, "Pretending to be Normal" and liked it very much.

 

I don't have Netflix but I will find a way to watch that doco. Thanks.

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For a few days my son didn't want to believe that Asperger's was autism. He was belligerent but as I say they need time to process. And who wouldn't need time to process that?! I am still processing it so why shouldn't he? But he has come to the acceptance now today because he said," I have autism and I am fine with that I am fine with me. And I said to him "I am fine with you too baby ,I have always been fine with you and I never want you to be a different you." And off you wanted to his Yu-Gi-Oh competition. In fact he would rather miss going to Nana's than miss Yu-Gi-Oh. Yu-Gi-Oh is now part of his Sunday routine.

 

Another thing we have done is put a warning sticker on our vehicles and our door. And it says emergency caution: person with autism may not respond to verbal commands. If there's an emergency situation like a car accident, fire or something like that he may not respond appropriately. And I want Emergency personnel or police to be aware that he has a disability so if he goes into meltdown they won't be assuming that he's on drugs or drunk or something like that.

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