Autism Awareness!

jenwillis212 · Apr 2, 2013

This is a great thread! I have really enjoyed reading everyone's experiences and stories. The classroom I work in doesn't give me much experience with high functioning autism, which I find very interesting. My husband and I used to hang out with a guy with Asperger's years ago. We still see him occasionally and I chat with him from time to time. He is one of the smartest people I have ever met and his vast knowledge of things amazes me. He can take apart anything, fix it and put it back together. Quirky, yes- but so much fun to be around! Some people don't want to give him a chance and that frustrates me to no end. The children I work with are very different than him and just as much fun to be around. I often find myself wondering what they are thinking, especially one little boy who only makes sounds. But when he climbs up in my lap and pats me, my heart just melts! So fortunate to enjoy my job and the love of these children!!

pinky · Apr 2, 2013

Amy262 said:
My son has Asperger's, and he is simpy AMAZING!! Math is his thing. He will most definitely be an engineer some day...or do something with computers, etc. He catches on so quickly to anything math-related. It's like his brain is just wired to understand anything and everything mathematical. Reading comprehension he sometimes struggles with, especially fiction stories. He would much prefer to read non-fiction. Even though he received the Asperger's diagnosis several years ago, he has adjusted beautifully to school. He is successful and on honor roll. He is just a little quirky socially. My daughter is the complete polar opposite of my son. She is a social butterfly, which has done wonders for him. You can't ignore my daughter...she will MAKE you pay attention to her! Lol!! So, she has really helped him with interacting, even though she is almost four years younger than him. Of course, there are times when I have to intervene and tell her to back off and give him his alone time, because he truly does need that quiet time.

Have you introduced your son to musical instruments? Sometimes math skills and musical talent go hand in hand and can be therapeutic, too.

Fizzlepop40 · Apr 2, 2013

pinky said:
@Fizzlepop40 , I love your avatar. At first glance, your guinea pig looks like Pikachu. cute, cute, cute....

Thanks.

Now that you mention it, he does look a lot like Pikachu in this picture! Never noticed that before.

pinky · Apr 3, 2013

Fizzlepop40 said:
Thanks. Now that you mention it, he does look a lot like Pikachu in this picture! Never noticed that before.

What's funny is that the guinea pig in my avatar was named Pikachu but I think your photo is better suited to the name than mine. Pikachu was my favorite guinea pig name.

manorexico · Apr 3, 2013

pinky said:
My son was in an early childhood program beginning at age 3 due to delays in receptive and expressive language. In IL, you can have services for speech related issues up to age 7 and then a diagnosis has to made in order to continue receiving any special services. Our school district insisted my son was autistic and got very pushy. It's a long story that I actually discussed on another thread on here but it resulted in us pursuing having testing done at our own expense to get the right diagnosis. He was tested by a pediatric neurologist, pediatric psychiatrist, speech pathologist and audiologist. The testing was extensive. He was also prescribed adderall, dexedrine, and ritalin to see if meds made a difference... none of them helped; in fact they made it worse. He met with the psychiatrist for quite a while so he could assess him. He felt he was not autistic. The neurologist agreed. The speech pathologist was able to determine exactly what the issues were with his speech that hindered his language. She ran tests on him for 3 days. She suggested a language disorder (CAPD) and referred us to the audiologist who diagnosed Central Auditory Processing Disorder which is actually a brain disorder that impacts how you hear sounds and leads to language problems that impacts social skills. Audiologists who are trained in CAPD can diagnose it. Other doctors cannot. There are a lot of subcategories of CAPD, too, but once you get the correct diagnosis, compensation skills and preferential seating and test taking, etc., help the kids to cope and to learn to succeed. CAPD is often misdiagnosed as Autism. Don't allow a school to diagnose your child. Schools get federal funds for certain diagnoses so they push labeling. Get independent tests done by your own doctors and not those recommended by the school. Had we not done testing, he wouldn't have gotten the help he really needed. He had an IEP for Writing Composition because that's what he really struggled with but was pulled from special ed in grade 10. He graduated with a regular diploma and is now a senior at a 4 year college. He came home yesterday with an A+ on a research paper he had to write for one of his classes. The professor wrote on it that it was perfect and best in the class. Finding the RIGHT diagnosis is critical.

I absolutely agree! After I read your comment I went ahead and called our pediatrician again saying that I wanted to see a pediatric neuropsych. She has called in the request to the doctor and we are on a waiting list. That is for my oldest girl. I also sometimes question the autism diagnosis for my youngest mostly because she never has had other testing done. I am now on the wait list for a neurologist and a genetics counselor for her. I want to make sure that their diagnosis is 100% correct so they can get the help that they really need. Thanks

pinky · Apr 3, 2013

manorexico said:
I absolutely agree! After I read your comment I went ahead and called our pediatrician again saying that I wanted to see a pediatric neuropsych. She has called in the request to the doctor and we are on a waiting list. That is for my oldest girl. I also sometimes question the autism diagnosis for my youngest mostly because she never has had other testing done. I am now on the wait list for a neurologist and a genetics counselor for her. I want to make sure that their diagnosis is 100% correct so they can get the help that they really need. Thanks

We also ruled out anything genetic and had IQ testing done. He scored a 129 non verbal and a 115 verbal so we knew it wasn't related to IQ. He did well in most subjects except for reading comprehension and writing when he was in elementary school. The school staff figured that since he struggled with language, it affected his writing, but because he's smart, he was able to overcome some of the obstacles. Socially, it was really hard for him because it was hard for him to process things being said and respond. He's pretty outgoing so it would have probably been easier on him if he was shy. He has a very hard time understanding what's being said when there are conflicting sounds, such as fans, lawn mowers, talking, music. In simple terms, his disability is due to hearing sounds at different intervals in each of his ears due to the way his brain works. He learned he needs to sit near whoever is speaking and ask a lot of questions if he misses something. He also learned that he needs to explain why he needs to ask so people don't get annoyed. Once we figured out what it was, it was all about learning compensation skills and asking for the accommodations he needed. I'd recommend being assessed by a speech pathologist because patterns of speech or lack of tells them a lot. Good luck finding answers. Feel free to PM me anytime .

manorexico · Apr 3, 2013

We had the IQ testing done on my oldest last year, they didnt give me verbal and non-verbal scores just a quantitative IQ which was 160. Yes, she has a genius level IQ not surprising though since mine is 180 and my husbands is 160 as well. I know that high IQ has nothing to do with a lot of problems, so I kinda took the IQ testing with a grain of salt.
With my youngest I was told that they didnt need to do genetic testing they "knew" it was only autism. As time has gone on I have really started to question this. I dont feel like she has been tested enough for other things. With her I also know she has a high IQ as she is a good problem solver, but she is non-verbal as well as having a lot of signs of autism such as melt downs, sensory issues, stims, poor eye contact, and others. It may just be autism but I want to make 100% sure.

pinky · Apr 3, 2013

manorexico said:
We had the IQ testing done on my oldest last year, they didnt give me verbal and non-verbal scores just a quantitative IQ which was 160. Yes, she has a genius level IQ not surprising though since mine is 180 and my husbands is 160 as well. I know that high IQ has nothing to do with a lot of problems, so I kinda took the IQ testing with a grain of salt.
With my youngest I was told that they didnt need to do genetic testing they "knew" it was only autism. As time has gone on I have really started to question this. I dont feel like she has been tested enough for other things. With her I also know she has a high IQ as she is a good problem solver, but she is non-verbal as well as having a lot of signs of autism such as melt downs, sensory issues, stims, poor eye contact, and others. It may just be autism but I want to make 100% sure.

160 is amazing. IQ is actually associated with a lot of issues, though. There's what they call a sweet spot but once you get higher than that, there are often problems like anxiety, depression and personality disorders. John Nash is a good example. He was brilliant but suffered from schizophrenia. I have an uncle who had a really high IQ. My mom said that he had a near perfect memory. He liked to play cards because he could remember every card played and always won. He also had multiple nervous breakdowns, though, and was institutionalized more than once. He was a really nice guy but really sensitive.

Amy262 · Apr 3, 2013

pinky said:
Have you introduced your son to musical instruments? Sometimes math skills and musical talent go hand in hand and can be therapeutic, too.

My husband is actually a piano teacher and my son has been taking lessons for about three years (he started playing at 7 years old). My son is incredibly talented musically. Even before he could speak, he would hum classical music pieces with perfect pitch. My husband motivates our son in his music by graphing his progress. Sometimes he doesn't want to practice piano (what kid always does, right? Lol), but the graph of his progress is a great motivator. My husband says that our son is playing pieces that my husband didn't play until he was about three years older.

manorexico · Apr 3, 2013

pinky said:
160 is amazing. IQ is actually associated with a lot of issues, though. There's what they call a sweet spot but once you get higher than that, there are often problems like anxiety, depression and personality disorders. John Nash is a good example. He was brilliant but suffered from schizophrenia. I have an uncle who had a really high IQ. My mom said that he had a near perfect memory. He liked to play cards because he could remember every card played and always won. He also had multiple nervous breakdowns, though, and was institutionalized more than once. He was a really nice guy but really sensitive.

Yes, I can attest to the higher the IQ the more issues! I have some issues when it comes to stuff like that too! I do wonder if her high IQ is the problem sometimes. It is something that I want to talk to the psych about.

pinky · Apr 3, 2013

Amy262 said:
My husband is actually a piano teacher and my son has been taking lessons for about three years (he started playing at 7 years old). My son is incredibly talented musically. Even before he could speak, he would hum classical music pieces with perfect pitch. My husband motivates our son in his music by graphing his progress. Sometimes he doesn't want to practice piano (what kid always does, right? Lol), but the graph of his progress is a great motivator. My husband says that our son is playing pieces that my husband didn't play until he was about three years older.

My son plays piano, alto sax and tenor sax. My father and his father were musicians. I never made the music connection until his fourth grade teacher told me he got up and played songs by ear on the classroom piano. We started him on piano lessons right away. He was first chair for saxophone in Wind Ensemble in high school, was in Jazz Band and Marching Band. He not only loves music, he finds it soothing and relaxing. There are two good books on late talking children by Dr. Thomas Sowell who has PHD in economics: The Einstein Syndrome and Late Talking Children. One of them specifically discusses a link there often is between late talkers and a gift for mathematics and music.

R5 plus · Apr 3, 2013

We have 2 very close friends that have Asperger's. The girl is close to my oldest daughter in age and are great friends. I would never have guessed if the parents hadn't told me.

My oldest also has a friend who is autistic. They've been friends since 2nd grade, although in the beginning it was very rocky. She has a very strong personality (she'd make a great lawyer :expressio) and she just wasn't getting why he would be so obstinate about things. I spoke to her about it a lot, but finally asked our pediatrician to speak to her. That worked wonders; he really seemed to get through to her. The 2 are still good friends, both in 6th grade now.

I also found out recently that my middle daughter's teacher has a child with autism. Don't know to what degree, but she is getting therapy to learn how to chew and help with speech. She is around 2 1/2.

Even my littlest has made a friend who I believe is autistic (never heard her formal diagnosis). When we volunteer at school, her friend visits with my 2 year old a few minutes when she sees us.

Thank you parents for all you do with/for your kids. And thank you @cavykaitlyn for raising awareness. Love the poem. I don't know that I'm doing something specific for Autism Awareness, but I hope I'm raising kids to be understanding, compassionate and with the ability to recognize people's value beyond the externals. Blessings.

pinky · Apr 3, 2013

manorexico said:
Yes, I can attest to the higher the IQ the more issues! I have some issues when it comes to stuff like that too! I do wonder if her high IQ is the problem sometimes. It is something that I want to talk to the psych about.

My sister and I had that discussion one time. I think that people with high IQ's can often read right through people which might explain why eye contact can be a problem sometimes and the stress level goes up.

Amy262 · Apr 3, 2013

pinky said:
My sister and I had that discussion one time. I think that people with high IQ's can often read right through people which might explain why eye contact can be a problem sometimes and the stress level goes up.

I heard it explained once this way...a person with Asperger's was asked why he didn't make good eye contact. He replied that he could either listen to you or look at you, but it was too much information to do both at the same time. When he looked at you, he would get focused on eye color, wrinkles, freckles, etc. I don't know if that is true for everyone, or if that was just him.

pinky · Apr 3, 2013

Amy262 said:
I heard it explained once this way...a person with Asperger's was asked why he didn't make good eye contact. He replied that he could either listen to you or look at you, but it was too much information to do both at the same time. When he looked at you, he would get focused on eye color, wrinkles, freckles, etc. I don't know if that is true for everyone, or if that was just him.

That's really interesting. My son knew someone who was diagnosed with Asperger's, too. He seemed to process information all the time. You'd start any conversation and you could see his mind working. He could also be very stubborn and resistant. If he set his mind on something, you couldn't sway him. We took him to Blockbuster one time and he didn't want to leave. We were there for a very long time. I could also see a lot of discomfort in him when you'd look at him in the eyes. He'd either put his head down or turn away. He wanted to have a career in law enforcement and seemed to be really knowledgeable about the criminal justice system.

Amy262 · Apr 3, 2013

pinky said:
That's really interesting. My son knew someone who was diagnosed with Asperger's, too. He seemed to process information all the time. You'd start any conversation and you could see his mind working. He could also be very stubborn and resistant. If he set his mind on something, you couldn't sway him. We took him to Blockbuster one time and he didn't want to leave. We were there for a very long time. I could also see a lot of discomfort in him when you'd look at him in the eyes. He'd either put his head down or turn away. He wanted to have a career in law enforcement and seemed to be really knowledgeable about the criminal justice system.

I'm sure it is different for everyone...just like all people are individuals in every respect. I have since asked my son why he sometimes won't look at my eyes when he talks to me, and he said it was "just hard to". I never push the issue. He is still pretty young, and for the most part, his eye contact is very good now...much better than it used to be. I'll be curious to see how my son explains the eye contact thing as he gets older. His teachers are always amazed as they get to know him at the beginning of a school year. The past three years, each of them has said to me, "It seems like he is not paying attention, but then when I call on him he knows the answer." Lol Although, there are times when he truly is NOT paying attention, though!

cavykaitlyn · Apr 3, 2013

Oh my goodness! Thank you EVERYONE, for your compliments on my writing, as well as the addition of your own stories and experiences! I have considered being a writer, but I feel number one that I am not good enough (my sister writes poetry and I feel I can't measure up) and number two because I was told they don't make enough money unless they really hit it big, like JK Rowling, Stephanie Meyer, those kinds of people (and for reference, I hate Twilight, but I adore Harry Potter!). I have at least ten more poems here, on my phone, if anyone would care to read them

they were written (most of them) during a bad time in my life a couple months ago. And the one I'm going to share with you was written on the night our beloved dog, Sydney, passed. I almost shared a picture, but I suppose it is because I am Cavy Caged that I cannot share it?
Sleep Sound
Your golden spirit held no fear
Of your demise, which was surely near
Your heart hasn't yet gone
I remember you playing in the backyard lawn
Carefree of suffering for a moment or two.
Jumping for joy when your friends arrived
I think we all wish something...insignificant died
Then the blow wouldn't hurt as much.
Soulful and running, until your last breath
Nothing could take us away but death
Ride in the heavens, willing and free
Your body was very dear to me
The Rainbow Bridge welcomes you, child.
But your mind even more so, with treasures abound
Sweet little Sydney, sleep sound, sleep sound.
Thank you again, everyone! Feel free to continue your inflow of messages, I love reading them!
And it's a funny thing, yesterday my mom told me I was 95% Asperger's, but the other five had them labeling me clinically as PDD-NOS! I hate that more than anything! But three doctors have diagnosed me with AS, so we go with it

Can't wait for the awareness events to start! Although, I hate that October gets more attention than April. Yes, it is a deadly condition. But it is not nearly as common, and does not last a lifetime! I appreciate the strong women out there who are fighting cancer, but autistics should get just as much love, merchandise, and publicity! I have a blue autism survival bracelet on me right now, and I'm going to find my shirt to wear tomorrow! Wish me luck!

pinky · Apr 3, 2013

Amy262 said:
I'm sure it is different for everyone...just like all people are individuals in every respect. I have since asked my son why he sometimes won't look at my eyes when he talks to me, and he said it was "just hard to". I never push the issue. He is still pretty young, and for the most part, his eye contact is very good now...much better than it used to be. I'll be curious to see how my son explains the eye contact thing as he gets older. His teachers are always amazed as they get to know him at the beginning of a school year. The past three years, each of them has said to me, "It seems like he is not paying attention, but then when I call on him he knows the answer." Lol Although, there are times when he truly is NOT paying attention, though!

What's really interesting about my son is that he has very little recollection of the years when he didn't talk much. As he got older, we noticed his learning followed a pattern and he progressed in leaps, not gradually. It would be like he just froze in time and then would suddenly wake up and make huge strides. His elementary teachers used to get annoyed because he was always a stickler about following the schedule. He'd remind them if it was time to do switch to something else. As a young adult, he's still a perfectionist. It bothers him. I think he might have gotten that from me because I'm very particular about things, too.

Amy262 · Apr 3, 2013

pinky said:
What's really interesting about my son is that he has very little recollection of the years when he didn't talk much. As he got older, we noticed his learning followed a pattern and he progressed in leaps, not gradually. It would be like he just froze in time and then would suddenly wake up and make huge strides. His elementary teachers used to get annoyed because he was always a stickler about following the schedule. He'd remind them if it was time to do switch to something else. As a young adult, he's still a perfectionist. It bothers him. I think he might have gotten that from me because I'm very particular about things, too.

Yes, my son thrives on routine and schedules, as well. I'm the same way, and I have self diagnosed myself as being slightly OCD (some would say more than slightly LOL). He does well with change, though, and never had any meltdowns if our schedule changed. We have been very lucky in that he has never had any behavior problems. He does have ADHD in addition to Asperger's (which the psychologist told us is common for the two to go hand-in-hand). He does take meds for that which has worked quite well for him (he is on Vyvanse). His speech progressed somewhat normally, in that he reached those speech milestones just barely (I can't remember what they were...something like 50 words at a year, etc). But, his language usage was behind. He couldn't carry on a conversation or answer questions well. Now, he is nearly normal. The only thing that I still notice is that his conversations are sometimes one-sided. If he has a topic to discuss, then that is the ONLY topic to discuss. Lol But, he does well with answering questions both at home and a school. He still has a hard time starting up conversations with his peers and prefers talking to adults. Although, he does have friends, and apparently this year is quite the hit with the girls (according to his teacher, all the girls want to work with him during partner work time!)

@cavykaitlyn - Thank you for starting this thread! I agree with the others...you are a very talented writer!

Kim37040 · Apr 3, 2013

Great poem first of all.
I am so glad this is a thread. I work at a college and have a lot of contact with students with Aspergers and Autism.
I find that a lot of people do not think in terms of Autism in young adults and adults.
One of my hobbies is making Autism Awareness key chains.
I believe in spreading awareness.

I hope everyone reads this thread

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