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DJW 07-23-2006 08:34 PM

I have a 31 yr old son with Autism/Aspergers...hope this info helps
I thought I'd post this after reading so many heart wrenching post's by parents of Autistic children.

My son was diagnosed with autism when he was 4. That was 27 years ago.
He was fairly normal until after his 2nd birthday - then he stopped talking, began to play in one spot on the floor...all day long, he would only repeat words that I would say, he began to scream at certain sounds on TV - certain shows would send him into a painful fit. He developed phobias over the wind and rain and was afraid to run. He walked on his toes but his arms seemed fine.

At 4, I took him in for a health screening to be ready for kindergarten. It was then that I was told he had autism. I was also told that he probably would never function well enough to dress himself and I should look into the option of institutionalizing him... (This was an absurd idea to me - I KNEW he could dress himself - he could take my vacume cleaner apart and put it back together in minutes! );) I was a single parent and I suppose the doctor thought he was being kind by giving me a way out of the hassle of parenthood of an autistic child. I was blissfully young and ignorant and just believed I could fix my son. This is how you have to be!

I was sent to the city Speech and Hearing center for an assessment and they were about to label him as non-verbal until he dropped the headset and said "Oops! sorry about that!" - They hadn't believed me when I told them earlier that he DID talk - when he wanted to.
He was registered to a unique elementary school in my area for Kindergarten. This school has a wing for handicapped or health challenged kids. The other part of the school were for regular students. At lunch and recess they all got together to play.:) It was very therapeutic for all of the kids.
The school provided occupational therapy to help his balance, fine motor skills and his walk. His classroom targeted his attention span and social skills. I also took him to the speech and hearing center twice a week for about a year.

This was all fine and it kept him busy - but his biggest breakthroughs came when he received a video game for his birthday from my sister. It was donkey kong (remember this was about 25 years ago..) The game really strengthened his attention span and worked on his eye-hand coordination. He had to concentrate on something for more than an instant in order to advance to the next level.. This proved to be extremely therapeutic!

By the time he was 10 years old - he was sent to the regular wing of the school. He still had issues - but his speech was great, his fine motor skills were much better, attention span was good enough to follow class instructions,.....He still was stuck in "routines", He still had phobias, he still could not look me in the eye for very long.....but he was changing for the better!

He continued to progress to high function through high school and made the "Who's who of high school students" book - two years in a row. :)
He graduated with a 3.85 GPA. He still has a photographic memory..He is still stuck in his routines. He has learned how to copy social behavior so it is hard to tell that he's not normal...Every once in a while though there will be an inappropriate laugh - or a pause when there should be a reply...but other than that he's incredible!

He has been working at his job for 10 years. He drives. He makes good money. He doesn't understand sarcasm and is still very sweet and innocent to the world. I keep him close by. ;) He has researched some of the supplements that are mentioned for autism and takes Vitamin B6, NAC. etc...on occaision. He said it helps him to concentrate.

I just wanted to post this so parents of Autistic children understand that there is hope - even with the worst prognosis!

GatsbyLuvr1920 07-23-2006 08:50 PM

Re: I have a 31 yr old son with Autism/Aspergers...hope this info helps
Wow. Your son in his high-functioning years sounds a lot like me! lol! :D I, too, have a photographic memory, need routines, have obsessive fixations, but am pegged as "eccentric" by many, rather than an Aspie (I'd say I have a moderate case). I've never had extreme social deficits, so I've always been "weird" and was teased in elementary school, but have managed to plug along and not be totally ostracized. I'm so happy to hear about your son's tale! That's great- what amazing progress he made throughout his life! I only hope that I'll be able to graduate college in three years, go through grad school, and be able to fulfill my career without my Asperger's interfering too much. :angel:

DJW 07-23-2006 10:12 PM

Re: I have a 31 yr old son with Autism/Aspergers...hope this info helps

You have a secret weapon! (that photographic memory ;) ) Of course you'll do wonderfull in college! Just stay away from the casino's.....heh!

When my son was young - around 10 or so...we discovered he had an incredible ability for calculating calendar dates. As he became more high functioning, he seemed to lose this ability.. Have you changed at all in your abilities?

Also - he is still progressing in his functions. From the age of 25 to present he has included much to his routine so that he is more flexible. As his routines grow - he feels more comfortable. He seems to add new places to visit, new hobbies, he loves to go on driving trips to visit familiy... He still doesn't hang around with "friends" - he hangs out with family - but he loves to go to work functions to try to socialize...

lgrot 07-24-2006 12:09 AM

Re: I have a 31 yr old son with Autism/Aspergers...hope this info helps
I really appreciate your post. What helped me the most was hearing how your son continued to progress as he aged.
My son is 14 and just keeps getting better every year without any therapies.
However, for a long time there was the feeling in the autism community that you had to hit them with every treatment you could afford (even to the detriment of the rest of the family) while they were young, or else you had lost that "window of opportunity".
I cherish letters like yours!

DJW 07-24-2006 01:41 AM

Re: I have a 31 yr old son with Autism/Aspergers...hope this info helps

Over the decades - I have heard some of the worst advice and gross misinformation from the "Autism networks". Every time a parent would talk about something positive in their childs progress - it seemed that 5 people who claimed to be "experts" would negate the positive :rolleyes:

If our children were space shuttles - then I would be concerned about "windows of opportunity"....but the human body is an amazing thing! Our cells grow and divide and replace themselves all of the time. The medical community still has no idea how the brain actually functions - so I can't believe anyone posting on an autism forum could know either! Yet they continue to barrage parents with the most hopeless and frustrating information.

Yes - many children with Autism may never improve. :( That may be a reality. But I am seeing many parents choosing to go by their instincts with their children's therapy and development and are delightfully surprised!
There is no Bible on Autism! No one can say when or how or why your child will improve. There is no blood test or scan to measure improvement. Just function tests and they may not capture improvement on a bad day. I think my son's progress began with an "interest" (video games) - that interest forced him to concentrate. That concentration allowed other functions to begin in his brain. Eye contact is still hard for him but concentration and dialogue is easy now. His brain is still making connections beause he is expanding his interests and activities.... I'm not a brain surgeon..just a mom. :)

I thank God I was young and ignorantly confident when my son needed me to be. I just KNEW he would be OK - because I didn't have the so-called sense to know otherwise. I just believed! :D

Now....How do I recapture that wonderful ignorance for my other life battles?:D

9CatMom 07-24-2006 06:54 AM

Re: I have a 31 yr old son with Autism/Aspergers...hope this info helps

Great news about your son! He sounds a lot like me. I suspect I have Asperger's, but I too was high-functioning academically. My family was told that I would never learn English (I started school speaking mainly German), but I wound up getting a Master's in English. More proof that people can be wrong. I have a lot of interests considered unusual for a person my age. I am a 41 year old woman who is fascinated with the life of English runner and physician Roger Bannister, who I also suspect to be a very high functioning individual with Asperger's. He possessed a photographic memory, was very intelligent, and was considered "odd" and "different" by others when he was growing up. I perceive him to be completely normal and very smart.

I don't have a photographic memory, but I have a good retention of factual material. I remember things I researched when I was very young. I have been working at my job at the library, one I love, for four years now. I don't drive yet, but I'm working on it.

I do believe people are too quick to assume the worst and to condemn people to a bad life before they have all the facts. People like your son, myself, Gatsby, and perhaps even Roger Bannister, defy the odds every day. We also continue to learn throughout our lives. Nothing is impossible, and nobody is hopeless.

GatsbyLuvr1920 07-24-2006 08:53 AM

Re: I have a 31 yr old son with Autism/Aspergers...hope this info helps
Hey, DJW! I wouldn't say my abilities have changed over time, but maybe I didn't quite understand the question correctly. I've always had a big difference between my verbal abilities and my visual-spatial abilities. I taught myself to read at four, and I was hyperlexic, but I've always struggled with math, namely geometry. (I'm actually quite good at algebra.) I was only diagnosed with Asperger's this spring, so I'm still trying to figure out what minute symptoms I had as a child. I think I was more outgoing and willing to have friendships as a young kid. I've always been a loner, and being an only child only has escalated that, but now, I hang out with my handful of friends once in awhile, and then I'm done. I do remember always being like that- I can count on my hands the number of times I had people sleep over because, by the next morning, I never wanted to talk with them. I wanted them gone and out of my house, I was just so annoyed with being around them. I just bought Tony Atwood's [I]Asperger's Syndrome[/I], and there was a description in there that kind of explains why a lot of people always thought I was nice and friendly at school and were my acquaintances, but still explains why I only have few actual friends (five or six): They said that some girls put on this "mask-like expression," and put on a smile to everyone, and no one suspects anything's wrong and that they're a bundle of anxiety underneath the surface. That's me. When I first tell people that I have OCD and Asperger's, they don't believe me. I'm a pure obsessional, so they don't "see" any compulsions, and I'm not one of those Aspies who's disruptive in class (I've always been a "teacher's pet" at school and unleashed my anger at home) and can't tell feelings. I'm very good at sensing small changes in tone and mood, but I think that's my OCD because it's usually asking whether I made someone mad, or if they're upset with me, a checking/reassurance compulsion of sorts. I've always had a photographic memory, though. Funnily enough, when I was writing about that passage from the book, I saw the page in my mind, and I could tell you what the page layout was like, too. I can still remember textbooks from ninth grade. One time my senior year, I was stuck in a study hall with all these snotty freshman and sophomores. (Don't know why- it was supposed to be a senior study hall...) One day, one of them asked out loud, "What chapter is the part on Stalin in the International Studies book?" I turned around and said, "11-2." The kid turned to it and shot, "How'd you know that?" He didn't like me to begin with because he thought I was a geek. I just said I remembered. So, the rest of the period, they tried to "stump" me, getting more angry that they couldn't show me up, so the memory thing has other advantages... :D It's also good for cramming- for anatomy my senior year, I learned all of the muscles for a diagram test in forty minutes... and got a perfect...;) I'm just good with lists. We went to see [I]Seven Brides for Seven Brothers[/I] Saturday night, and I wasn't all that interested in the play, so I just kept going over in my mind which brother went with which sister. I still remember them, too. Normally, I don't tell this kind of stuff in fear that people will think I'm bragging, but in the presence of those who understand Asperger's and its talents/hinderances, I don't mind. :angel:

DJW 07-24-2006 10:41 AM

Re: I have a 31 yr old son with Autism/Aspergers...hope this info helps
9CatMom and GatsbyLuvr1920,

You both sound so much like my son!

It's interesting Gatsby - that you are only now being diagnosed. I wonder how you were as a young child? I suppose being labelled as a little "odd" is normal for higher functioning Autism/Aspies - but then again - I've heard that label applied to most children at one time or another! :D I have 3 kids who are not Autistic and I think they can be just as "odd" in their own ways....;)

I will look for that book by Tony Atwood! My son will find it interesting!
Your description of your childhood friendships makes me chuckle - as it reminds me of my own childhood more than of my sons! Hey - maybe I'm an aspie and just never knew it? Unfortunately - I possess none of the "gifts". No photographic memory, no increased math abilities, etc... My son is exactly the same as you when it comes to Geometry vs algebra! I wonder why this is?

I am so glad I posted this thread! I love to hear from other high functioning Autistics/Aspies. I think people need to see that there are more exceptions to the mainstream belief in what to expect with this syndrome than what is being told!

GatsbyLuvr1920 07-24-2006 03:45 PM

Re: I have a 31 yr old son with Autism/Aspergers...hope this info helps
I don't think I was diagnosed until recently because Asperger's wasn't known about when I was a kid. In fact, the diagnostic criteria wasn't put into the DSM-IV until 1994, when I was 7. I think that, had there been more awareness then as there is now, that I would've been. My mom often feels guilty because she didn't realize that there was a problem, but that wasn't her fault- it was the fault of lack of information at that time. I wasn't officially diagnosed with OCD until September of '04 after I had just turned 17. I knew that I had it at 16 from research, research that had started out simply as an interest in mental illnesses. My mom took me to my old PCP in the spring of '03 because my anxiety got so bad and my irritability, but since PCP's have absolutely no knowledge about psychiatric disorders, I was diagnosed as having "Generalized Anxiety Disorder." I really was having panic attacks so bad that I couldn't go to school, and I began obsessing again in the fall of '02. While I was on my quest to see whether I really did have OCD or not, I did stumble upon Asperger's in a magazine article, and noticed similarities, but they focused too much on the social deficits, so I kind of forgot about it. The trouble is that I don't have a "typical" case of either one, specifically the OCD. Pure obsessionals are only mentioned in books, and unless you read them, you won't suspect OCD unless you're a handwasher or lock checker. :rolleyes: I went through a period of doubt (obsessive-compulsive doubt, as ironic that is) about whether OCD was really the condition I had, and when I finally got the diagnosis, I went through more doubt, thinking that maybe I just convinced the psychiatrist that I had OCD, and was given a label I didn't really deserve. I've truly accepted that I have OCD now because it's highly obvious, but I'm currently going through the same doubt with the Asperger's diagnosis, most likely because I was diagnosed so quickly and randomly by my CBT therapist during the middle of our treatment together. I'm beginning to accept it, too, but there's days where I doubt it and fret about it when I read about the severe social deficits I don't have, like trouble reading body language and extreme literal interpretation (I looove sarcasm, and I have absolutely no trouble with figures of speech, but I am slow to get jokes sometimes unless someone explains it to me). It really helps hearing from people who can recognize symptoms of Asperger's, and then tell me that I sound just like them or their child, as you've just done. I've heard many people on here say that, plus my chemistry professor who I just adore because he's geeky and random like me (I get to TA for him this fall! :D ) told my mom in December, even before I was diagnosed that he sees a lot of me in his daughter, who is an Aspie. That's why I get along so well with him and connected to him because he is the epitome of an mild Aspie himself. He noticed the traits in me before I did, which I think is funny. It was nice to finally have a teacher who actually understood my learning style and the deficits it causes, plus neither one of us uses much eye contact, so it was more comfortable to talk to him. ;) I'm also glad that you posted this topic because it helps to see the similarities. Reading similarities is the compulsion that lessens my obsessive doubt about whether I have it or not. I look forward to hearing more from you! One question: Does your son have the talent to mimic voices/accents and intonations? I've always been able to do this. For example, as I'm writing this, I'm listening and singing along to Gwen Stefani, and I can bend my voice to fit the nuances that she does. It's kind of creepy, really. :angel:

jeffreys mom 07-24-2006 04:09 PM

Re: I have a 31 yr old son with Autism/Aspergers...hope this info helps
Thank you so much for sharing your story with us. I really need this kind of a boost once in a while. My son is three and is high functioning. It gives me such hope that all will be good for him in his future. I worry so much about him. It's a blessing to read posts like yours. Thanks again

9CatMom 07-24-2006 07:35 PM

Re: I have a 31 yr old son with Autism/Aspergers...hope this info helps
I hadn't heard of Asperger's until 1997, by which time I was 32 years old. When I read about it, some of the traits fit me. The trait that stands out for me is "interests unusual in quality and intensity." At the time, I was also very shy and socially inept, although I have greatly improved in the social area. I will never be an extrovert by any stretch of the imagination. Also, I had no significant language delays. In fact, English and foreign languages were my best subject areas in school. Medical subjects also fascinate me. I really identify strongly with Roger Bannister, because he had problems fitting in as a child, just as I had, I suspect for many of the same reasons. He is a role model for me, even though I will never accomplish anything on as epic a scale as he did.

Interestly enough, Roger Bannister said something about growing up, "I think it is a universal adolescent problem, trying to find your place. The adolescent who is perfectly adjusted to his or her enviornment, I have yet to meet." I think everyone has something to overcome in life.

DJW 07-24-2006 08:26 PM

Re: I have a 31 yr old son with Autism/Aspergers...hope this info helps
You all are just amazing!

I'm still trying to understand what the downside of Aspergers is? Is it the lack of social skills? That could be a problem - then again, in today's societies - one would be wise to not open up too much! When I was in my 20's - I always wanted to meet my date or my friends at the location we were going to in my own car. I never wanted to feel trapped by having to wait for them to want to leave and wait for a ride home. If I felt I wanted to leave early - I always could. Some would think that was odd...but I was a single parent and had to allow myself flexibility when I socialized. I had to be ready to run on a dime if the babysitter called! :D Sometimes - I just wanted to leave early because I wanted time alone - before I picked my son up from the sitter. I'm not an aspie..just a person with circumstances that forced me to be different than my friends.

To be honest....I kind of liked that I had an excuse to be different!;) An excuse to leave early without upsetting anyone...

My son is very skilled at exiting a situation when he begins to feel uncomfortable. I should learn from him now! :D

My son is left handed...I understand this is common among autistic and aspergers.... Is anyone else here left handed or ambi? ?

mommaboyz 07-24-2006 09:38 PM

Re: I have a 31 yr old son with Autism/Aspergers...hope this info helps
Wow thanks for the post It was interesting and informative. I love to hear form other people dealing with these things esp. when the children are older or NOT even children anymore.

GatsbyLuvr1920 07-24-2006 11:29 PM

Re: I have a 31 yr old son with Autism/Aspergers...hope this info helps
I'm a leftie! lol! :D Always have been. My mother told a tale that I used to reach over and grab the spoon she placed on the right with my left hand while I was still in the high chair. What's particularly odd for me, and something that I'd like to find out in my own neurobiological research, is simply this: what went wrong with my development? First-off, I'm a girl, and we all know that boys are much more likely to be autistic. I just got done reading a few minutes ago that the boy-girl ratio in Kanner's autism is 4:1, but in Asperger's it's 10:1. Then, I'm left-handed. It is also known that left-handedness is much more common in boys, and is often thought to be some sort of "pathology." Left-handedness has also been linked to genetics, and there's only a 2-10% chance of someone being left-handed who has two right-handed parents. I'm in that 2-10%. ;) In fact, the only lefties in my entire family are two of my mom's cousins, and they're not even siblings. Both children of siblings of my maternal grandmother's, but they themselves are not siblings, but cousins, too. My mother didn't have any problems with me in pregnancy, either. She was induced, that was it, but I didn't go into distress, and she didn't have a C-section or anything like that. I did have strep throat a lot when I was four and five, which may have helped seal my OCD as some sort of PANDAS (Pediatric Autoimmune Neurological Diseases Associated with Streptocci), but I already had the clear-cut verbal precocity and obsessive fixations long before that. There's no one in my family who has OCD or Asperger's or any type of ASD. My mom, her brother, and my maternal grandmother are all very fussy and perfectionistic, but they don't exhibit any other of my symptoms. It just kind of baffles me... :angel:

DJW 07-25-2006 12:40 AM

Re: I have a 31 yr old son with Autism/Aspergers...hope this info helps

I read about the autism/aspie tendency toward left handed somewhere long ago - and since then - I have done my own personal research. (That means I asked all of the parents of autistic children I know :D and I have a neighbor who works with autistic/asperger kids in the school district...) it's amazing that they are almost all left handed or ambidextrous!
I have 4 children and 2 are lefties. Of my 5 siblings two are lefties... (I'm a righty and so is my son's father...)...So in my family it could very well be a family trait thing...

Over the years I have beaten my brain as you do - trying to figure out what caused this conditon in my son! I know he wasn't born with it. 10 years ago I found video tapes of my son that my father took when he was born - until he was almost 2 years old. I had forgotten that he was perfectly normal until just after he turned 2. The tapes showed completely normal development - and social skills. He even walked normal! (for a toddler ;) ). He spoke and sang happy birthday at his party and looked right into the camera for his grandad. He interacted with his aunties and was so normal. He looked everyone in the eyes as though he was very comfortable. His grandfather died shortly after that and I always thought perhaps it was the trauma he felt from all of us in our grief that made him change... Then I remembered that it was around that same time he had his first series of vaccines. And I remembered that he had a severe reaction - high fever, rash, screaming fits. We lived with my mother at the time and she was very concerned. She had 6 children and had never experienced this type of behavior.

I know the jury is still out on the autism/Aspie vaccination connection...but after seeing those old video tapes of his normal behavior and development and filling in some of my son's history...I have to lean on the side of the vaccines as a cause for his condition. But - where many run for cover and throw their hands up in the air in anguish...I happen to think that the vaccine connection carries a much better prognosis for improvement than another cause of autism might. I just don't think we are as "hard-wired" as some people believe. I think if we are exposed to something outside of the womb - we have a better chance at minimizing the effects of it and possibly reversing the damage - whereas if we are born with it - it becomes more integrated into our DNA and it's harder to correct. Just a theory..;) But then again - I've met those who insist their kids showed signs of autism from birth....and those kids have progressed considerably! So maybe it's the new vaccine schedules they have from birth on? Maybe there was some maternal exposure to something during pregnancy? I just don't know. :confused:

To me - the fact that research on the cause just doesn't seem to be happening outside of those who are looking for a vaccine connection...speaks volumes to me about the connection. Autism is a huge epidemic now. Yet - we hear little about the search for a cause... I'm thinking someone in the vaccine pharmaceutical industry did a big "whoops!" and is quietly trying to clean it up...

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