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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 (31-40):
tscritch
by Silver Member on Apr. 17, 2013 at 1:45 PM

 That's really cool that they have such passion about things! Are they both autistic? If so is their autism the same?

Quoting specialwingz:

OMG!  For my twin boys, it was dinosaurs.  I would have sworn they would eventually be paleontologists!  And, Heaven forbid if you mispronounced a name or placed one in the wrong era.  It was brutal!  LOL.

Now, their obsession is Manga.  They read it over and over and over.  They have thousands of characters they have developed and drawn.  Each one with a complete dossier.  And, be prepared for a looooong conversation if you ask them about it.  Where reading used to be their escape, now it is their drawing and storylines.

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.


 

specialwingz
by Bronze Member on Apr. 17, 2013 at 1:50 PM
1 mom liked this

I don't consider it "stupid", really.  I consider it either uninformed or misinformed.  =)

Quoting tscritch:

 I admit I am guilty of seeing a "difficult" child and thinking man why aren't those parents doing anything. Then I catch myself and tell myself that I don't know their story....I give myself a talking-to in my head lol.

If I don't ask and put my own ignorance out there then how can I learn? I think waaaay to many people are afraid to ask...they don't want to look stupid...me, eh, I don't mind looking stupid :-)

Quoting specialwingz:

I appreciate you wanting to understand it.  So many are quick to judge and blame rather than to attempt understanding.

Quoting tscritch:

 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.

 


 


rosaleeandtwo
by Member on Apr. 17, 2013 at 1:51 PM
DS had a severe reaction to a vaccine and things went downhill from there (I don't think it was caused by the vaccine, more likely that his severe inflammatory reaction brought out his symptoms). He began to stop all eye contact, became much less affectionate, tip toe walking, and his diet changed dramatically. Suddenly things he had been eating for awhile he started gagging on.

A friend.actually asked if I had him checked for autism. Until.then all i knew of it was from Rainman (this was about 14yrs ago). Even most of the local docs didnt have much knowledge. He was finally diagnosed at 5 by a team of docs and therapists through Early Intervention.

Hes now almost 16 and has had an additional 6 diagnoses added to the original label of autism.
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jjchick75
by Bronze Member on Apr. 17, 2013 at 1:52 PM

My nephew is autistic. He was different basically from birth.  He cried all the time and never slept. He would sleep maybe 30 minutes every 6 or so hours. As he got older he didn't track with his eyes or even seem to be able to see. So his eyes were checked and they said they were fine. He was delayed in everything. He didn't hold his own head up until he was 4 or 5 months. He was diagnosed with low muscle tone but there was not cause really found. He was tested for everything. He was over 6 months before he even tried to turn over. He didn't crawl until after a year. He was 2 before he walked and he went straight to running. But he just ran in circles. He wouldn't come to anybody.  He never really seemed to hear anything anybody said. He didn't respond to his name. So his ears were checked and his hearing was fine. He was over 3 yeas old before he said his first word(which happened to no screamed in a shrill voice). Nobody really listened though. They just said he was delayed and he would catch up. But he didn't. He was over 6 years old before he started using short sentences. Finally at 7 my sister took him to a new pediatrician and she finally listened. He was diagnosed at autistic.

He's been in occupational, physical, and speech therapy since then. He's made huge strides. He talks really well now and has a very large advanced vocabulary. He still has low muscle tone but not like he used to have. He has clicks as we call them. He can spend hours stacking, unstacking, and restacking things. Also once he starts doing something you can't get his attention or pull him away from it. He goes to a school specifically for kids with disabilities where he gets his therapy. He is 14 now but he is more like an 8 or 9 year old. He is a sweet kid though and I love seeing all the progress he has made! 

specialwingz
by Bronze Member on Apr. 17, 2013 at 1:59 PM
1 mom liked this

They are identical twins.  Yes, they are both ADHD/Aspies.  It's not exactly the same.  But, very close.  For instance, one of them has issues with math to the point it is considered a math disability.  We had his IEP set up so that his math tests had a formula provided.  He can do it as long as there is a formula example.  Otherwise, all the formulas conglomerate and jumble on him.  Colleges also have special provisions for these types of disabilites.  Which they don't tend to tell you before your kids start college.  =/  We have been through hell this past year learning the ropes.  This fall, his algebra class will be set up with the formula examples.

They both have social issues.  But, they had to take a speech class.  I was soooo worried they would be too introverted and intimidated.  But, they both did very well, as long as the professor allowed them to do their speeches based on their passions.  After all, it was about form and delivery.  Not subject matter.  But, in the long run, the professor got wrapped up in their topics and ended up encouraging more from them.  This brought out some really great qualities that not everyone gets to see!  I was proud to say the very least!

Quoting tscritch:

 That's really cool that they have such passion about things! Are they both autistic? If so is their autism the same?

Quoting specialwingz:

OMG!  For my twin boys, it was dinosaurs.  I would have sworn they would eventually be paleontologists!  And, Heaven forbid if you mispronounced a name or placed one in the wrong era.  It was brutal!  LOL.

Now, their obsession is Manga.  They read it over and over and over.  They have thousands of characters they have developed and drawn.  Each one with a complete dossier.  And, be prepared for a looooong conversation if you ask them about it.  Where reading used to be their escape, now it is their drawing and storylines.

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.


 


Sekirei
by Nari Trickster on Apr. 17, 2013 at 2:00 PM
I am not sure. Something about making it easier for the docs to diagnose.
And no. Kids with PDDNOS (pervasive developmental disorder. Not otherwise specified) and aspergers are now just considered high functioning.


Quoting tscritch:

 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.



 



 


 

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cjsbmom
by Lois Lane on Apr. 17, 2013 at 2:07 PM

Yes, I do. There are definitely some markers of autism. If there weren't, they wouldn't have a clear definition of what it is. But each person I've met with autism seems to have their own unique challenges. Even my DH and son, as much as they are alike, they also each have unique quirks associated with their autism. It does make it very hard to explain when people ask questions, that's for sure.

Quoting desertlvn:


I know... It is hard to explain autism when it is really such a huge spectrum. I have found that the more you "see" and interact with autistic people the easier it is to get a feel for it. Know what I mean?

Quoting cjsbmom:

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.






cjsbmom
by Lois Lane on Apr. 17, 2013 at 2:09 PM

I know for us it changes as he ages. Some things he has grown out of, and others we just have to learn to adapt to and find new methods to help him. It's part of what makes it frustrating for me, because just when you think you have something figured out that works, it stops working, and you have to start from square one again. Like elkmomma said, a lot of parents just give up. 

Quoting tscritch:

 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 2:12 PM

Trains. It was trains for us. It used to make me crazy. I think we owned every kind of train available on the market. 

Quoting specialwingz:

OMG!  For my twin boys, it was dinosaurs.  I would have sworn they would eventually be paleontologists!  And, Heaven forbid if you mispronounced a name or placed one in the wrong era.  It was brutal!  LOL.

Now, their obsession is Manga.  They read it over and over and over.  They have thousands of characters they have developed and drawn.  Each one with a complete dossier.  And, be prepared for a looooong conversation if you ask them about it.  Where reading used to be their escape, now it is their drawing and storylines.

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.




cjsbmom
by Lois Lane on Apr. 17, 2013 at 2:14 PM

Oh the stories I could tell you about people who just had to put their two cents in about why my child was a brat in public. The one that sticks out the most is an older lady at the grocery store, who was watching CJ have one of his overstimulated meltdowns and told me loudly "that's nothing that a good spanking wouldn't fix." The cashier, who knew my son was autistic, looked right at her and said "he's autistic. What's your excuse for your poor behavior?" I've never seen anyone bolt from a store so fast in my life. 

Quoting tscritch:

 I admit I am guilty of seeing a "difficult" child and thinking man why aren't those parents doing anything. Then I catch myself and tell myself that I don't know their story....I give myself a talking-to in my head lol.

If I don't ask and put my own ignorance out there then how can I learn? I think waaaay to many people are afraid to ask...they don't want to look stupid...me, eh, I don't mind looking stupid :-)

Quoting specialwingz:

I appreciate you wanting to understand it.  So many are quick to judge and blame rather than to attempt understanding.

Quoting tscritch:

 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.

 


 



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