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Can someone help me understand autism?

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 I am the first to admit, I don't understand autism. What made you seek a diagnosis for yourself or your child/ren? I know I can look up a million sources and articles on the internet, I would rather ask real women who have it or have children who have it. Please can someone educate me (and maybe others)?

ETA- I really want to thank you all for sharing your stories, struggles and triumphs.

by on Apr. 17, 2013 at 12:00 PM
Replies (11-20):
Sekirei
by Nari Trickster on Apr. 17, 2013 at 12:51 PM
He is high functioning. They removed aspergers which is what he was originally diagnosed with. We have an ABA therapist that comes to the house 3 times a week and he is responding so well. He is protected by the disabilities act and when he returns to public school, he will have an IEP to help the teachers know what he needs and how to work with him. I homeschool him while we are living in Texas. This state just does not offer what he was recieving in Hawaii.
And no worries about the questions. I have no issues answering them.


Quoting tscritch:

 So what now, since being diagnosed has that done for him? Where on the spectrum does he fall?


I hope you don't mind all the questions, I am really trying to get a better understanding. :-)


Quoting Sekirei:

He still had some other odd behaviors. The flapping, he didn't speak in full sentences until kindergarten ( meaning, full sentences of his own bye can memorize lines from movies and would just spout those off) he has social issues and really has no empathy. He will phase out or get very upset if a place is too crowded. Lines up his toys and gets upset if someone moves them.
He is a good boy though. Lol



Quoting tscritch:


 Thank you! So even after the tubes they did further testing for autism? Why, at that point did they feel they needed to do further testing?



Quoting Sekirei:

For my son, I was simply concerned that he wasn't talking. He was 3 and still pointed and screamed or made little noises to get something. My mil also noticed this. Even though we both worked with him.
He had his hearing checked and the pediatrician sent us to a neurologist just in case. Autism wasn't mentioned until the neurologist met with him. The hearing test revealed he could barely hear us, which was caused by water behind his ear drums. He had tubes put in soon after that.
The neurologist didn't see him until after the surgery.
He recommended that Kael be tested and it took about a year and three docs before it was finished.


 


 

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desertlvn
by Silver Member on Apr. 17, 2013 at 12:54 PM
1 mom liked this

People with mild autism often seem "weird" or "odd" to other people. They are often struggle socially. They have a flat tone to their speech. It can seem like they aren't as connected or caring about others, even though that isn't true. They tend to have a focus or interest that can become obsessive: dinosaurs, lining things up, feeling soft sand, etc. eye contact is hard for them. They often aren't aware of social norms or cues and have to be taught explicitly how to interact.

tscritch
by Silver Member on Apr. 17, 2013 at 12:55 PM
1 mom liked this

 Thank you for sharing that!!

I do know that there are so many factors and no two people are alike. For me it's just that I read posts and whatnot about autism and I just don't get it. I have no personal experience to relate it to, but I want to understand. :-)

Quoting specialwingz:

My twin boys are ADHD/Asperger's Syndrome.  Asperger's Syndrome is on the high functioning end of the autism spectrum.  For them, it was the inability to focus on ANYTHING!  They are incredibly intelligent with a bit above average IQs.  But, in school, they could never finish things.  They couldn't focus on the teacher.  They would find their "happy place" by getting up in the middle of class, grab a book off a shelf and sit down and read.  It was how they escaped the "information overload".

Autistic brains work completely different than yours or mine.  I learned a lot about it, actually, when I researched traumatic brain injury due to an accident my ex-h had.  TBI and autism are very similar.

We tried the "diet" approach.  It totally did nothing.  We finally tried them with different meds.  Ritalin was the one that made the teachers shriek with amazement!  They boys owuld finally look them in the eye and repeat what the lesson was about!  Their grades improved and their social skills also improved.  They still read a lot.  But, it was used as a reward for paying attention in class.  As the years went by, they had to change the type of meds they were on.  Kids outgrow the dosage.  Or the medication didn't last through the day to still be effective for homework and boyscouts.  Tweaking times were hard.  But, we all got through it.

Now that they are in college, they are on Vyvanse.  Which was primarily (at first) designed for adults since an adult's day goes way beyond an 8 hour stint of anything.  LOL.  Now they have it for children as well.

College brought out a lot of their social inabilities again.  And, they are struggling again with organization.  But, we are working with them to help them try to find a new "sweet spot" that works for their brains.

There really isn't a short version to explaining autism.  And, really, all the words in the world don't cover what an autistic child and their caregivers go through on a daily basis.

 

tscritch
by Silver Member on Apr. 17, 2013 at 12:57 PM

 Why did they remove Asperbergers? Is it now a "seperate" thing on it's own?

Quoting Sekirei:

He is high functioning. They removed aspergers which is what he was originally diagnosed with. We have an ABA therapist that comes to the house 3 times a week and he is responding so well. He is protected by the disabilities act and when he returns to public school, he will have an IEP to help the teachers know what he needs and how to work with him. I homeschool him while we are living in Texas. This state just does not offer what he was recieving in Hawaii.
And no worries about the questions. I have no issues answering them.


Quoting tscritch:

 So what now, since being diagnosed has that done for him? Where on the spectrum does he fall?


I hope you don't mind all the questions, I am really trying to get a better understanding. :-)


Quoting Sekirei:

He still had some other odd behaviors. The flapping, he didn't speak in full sentences until kindergarten ( meaning, full sentences of his own bye can memorize lines from movies and would just spout those off) he has social issues and really has no empathy. He will phase out or get very upset if a place is too crowded. Lines up his toys and gets upset if someone moves them.
He is a good boy though. Lol



Quoting tscritch:


 Thank you! So even after the tubes they did further testing for autism? Why, at that point did they feel they needed to do further testing?



Quoting Sekirei:

For my son, I was simply concerned that he wasn't talking. He was 3 and still pointed and screamed or made little noises to get something. My mil also noticed this. Even though we both worked with him.
He had his hearing checked and the pediatrician sent us to a neurologist just in case. Autism wasn't mentioned until the neurologist met with him. The hearing test revealed he could barely hear us, which was caused by water behind his ear drums. He had tubes put in soon after that.
The neurologist didn't see him until after the surgery.
He recommended that Kael be tested and it took about a year and three docs before it was finished.


 


 

 

elkmomma
by Member on Apr. 17, 2013 at 12:57 PM
1 mom liked this

My 12yo is an Aspie.  While I have learned a lot and am still learning a lot; I don't think I will ever understand it.  Every child is different and it takes endless hours of patience and practice to find the varying techniques that work and hope or prayer that it doesn't change so we don't have to start all over again.  The sensory, behavior, anger, and communication issues take a toll on our frustrations and parents have to fight the urge to give up at times. Most of us don't  give up on our kids, but some do.  We deal with a lot of ignorance from those who simply choose to believe that the spectrum is BS and nothing more than a lazy or bad parenting. 

I need to add a THANK YOU.  OP there are so many who don't want to understand or even try to.  So, THANK YOU for an earnest desire attempt to get it.

thank you

tscritch
by Silver Member on Apr. 17, 2013 at 12:58 PM

 Thank you! That is a very helpful description.

Quoting desertlvn:

People with mild autism often seem "weird" or "odd" to other people. They are often struggle socially. They have a flat tone to their speech. It can seem like they aren't as connected or caring about others, even though that isn't true. They tend to have a focus or interest that can become obsessive: dinosaurs, lining things up, feeling soft sand, etc. eye contact is hard for them. They often aren't aware of social norms or cues and have to be taught explicitly how to interact.

 

tscritch
by Silver Member on Apr. 17, 2013 at 1:00 PM

 Thank you.

Do the techniques that work change often? Does something trigger that change?

See I don't want to be ignorant of it. I don't think it's bs, I just don't know much about it. So what better way to cure ignorance than by learning :-)

Quoting elkmomma:

My 12yo is an Aspie.  While I have learned a lot and am still learning a lot; I don't think I will ever understand it.  Every child is different and it takes endless hours of patience and practice to find the varying techniques that work and hope or prayer that it doesn't change so we don't have to start all over again.  The sensory, behavior, anger, and communication issues take a toll on our frustrations and parents have to fight the urge to give up at times. Most of us don't  give up on our kids, but some do.  We deal with a lot of ignorance from those who simply choose to believe that the spectrum is BS and nothing more than a lazy or bad parenting. 

 

cjsbmom
by Lois Lane on Apr. 17, 2013 at 1:03 PM

Happily. And thank you for asking. I wish more people were interested in learning about it. 

First off, there is an autism spectrum. So no two people with autism will be 100 percent similar. As I like to say, if you've met one person with autism, you've met one person with autism. 

For me, I sought out a diagnosis for my son when he was 2.5 and struggling with speech. Not only was he not talking at all anymore, but he had totally lost what little bit of language he already possessed. At that time, I wasn't thinking autism, I was thinking hearing. He had all kinds of tests done. He also had surgery to remove his adenoids, which helped tremendously with the speech issues. However, there were other things that he would do that led me to believe something just wasn't right. 

He would have epic - and I mean epic - meltdowns over the smallest things. Being in public was not happening, because it always resulted in one of his screaming fits. I came to find out later that he was so overstimulated by it that it was actually painful for him, hence, the outbursts. 

He used to line up his toys and was more interested in watching how the wheels turned on his cars than actually driving them. He didn't interact with other kids his age and he would get really upset if someone messed up his order after he'd line up toys. 

When early intervention became involved, they recommended he be evaluated for autism. I cried for days, because that was not something I wanted to face. But we had the eval, and he was diagnosed with PDD-NOS, which is a very high-functioning form of autism. He struggles socially (he's 7 now), and he has many sensory issues. His IQ is off the charts, so he gets bored really easily. But he has had consistent therapy since age 3, which has gone a long way in helping him to deal with his sensory issues and adapt better to social situations. He struggles, but it's not as bad as it would be if he didn't have the help he needs. 

If you have any specific questions, I am happy to respond to the best of my knowledge. 

cjsbmom
by Lois Lane on Apr. 17, 2013 at 1:06 PM

Also, I wanted to mention that for us, we believe it is genetic, as my husband has Aspergers, and if you examine the men on his dad's side of the family, they all seem to have a "touch" of autism in them. People always ask me about finding a cure, but for us, I don't know that a cure would be simple, as it seems to be a genetic predisposition. 

cjsbmom
by Lois Lane on Apr. 17, 2013 at 1:09 PM

Keep in mind that this is more true of higher-functioning autistics than those who are diagnosed with "classic" autism. People with classic autism may never learn to speak or even walk on their own. It can be quite challenging for parents of children who are diagnosed with classic autism. 

Also, the flat tone to the voice is only true of some autistics. My son is very animated when he speaks and when he reads. I think that comes from us reading to him at such an early age and consistently. Who knows if he would be so animated if we hadn't taught him that skill. 

Quoting desertlvn:

People with mild autism often seem "weird" or "odd" to other people. They are often struggle socially. They have a flat tone to their speech. It can seem like they aren't as connected or caring about others, even though that isn't true. They tend to have a focus or interest that can become obsessive: dinosaurs, lining things up, feeling soft sand, etc. eye contact is hard for them. They often aren't aware of social norms or cues and have to be taught explicitly how to interact.



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