Does anyone have any personal insight on Asperger's Syndrome?

I know that with any type of disorder in the autism spectrum it is very important to have early intervention. This means getting your child tested and if he is on the spectrum then getting professional training in how to deal with it. Here is a website for a place locally (in my area) that does this, perhaps they can refer you to someone in your area. I have a friend who works there and that is how I know this information.
EC Cares

Yea, he actually attends a group called early intervention that is supposed to be having an actual autism specialist come and check him here in the next few weeks to either give or not give the diagnosis. I have pretty much already convinced myself he does have it, just trying to figure out how to deal with it like you said. Maybe I’m jumping the gun here but being something that’s not medical and something that only I can learn how to cope and know what to do is what’s killing me. What was the website? I’m new here and trying to figure all this out still so if you sent it to me somehow I wouldn’t know it. Thank you!

@Erica_Rachelle That is great he is already in a classroom. It sounds like they aren’t professionals though?? If you find a professional they can help you with very specific techniques on how to help him. That is actually what my friend does. She goes to people’s homes and coaches them on techniques that help both parent(s) and child. I don’t think you are jumping the gun at all. I think you are right on track. You just need to find the right professional to help you out.

The website is above in red. Click where it says EC Cares.

In retrospect their website kinda sucks but their organization is great. It might be good just to have contact information so you can see if they will provide you with a referral.

One of my little grand-nephews (now aged 4) was diagnosed with PDD-NOS (for Pervasive Developmental Disorder-Not Otherwise Specified)...similar to Asperger’s. In NSY there is intensive at-home physical, behavioral, and occupational therapy. It is provided for free until the child is 4. He/she then goes to school with a lot of support.

My little guy is improving a lot but still is developmentally lagging. It is hard and constant work but worth it. He is considered intellectually high-functioning but has bad social skills and attention problems.

Here is one of many links that give resources: http://www.childrensdisabilities.info/autism/groups-autism-asperger.html

There are enormous parent support groups, both nationally and in every state.

Yes RedPowerLady..they aren’t very professional. In fact, one of the ladies there told me flat out he didn’t have it before I even got the words out of my mouth. It would be so nice to have someone come coach me along the way because I am lost here.

GailCalled..I understand what you’re saying. Tyler is also improving, but at the same time it gets harder everyday. He is very smart, just has the social and attention problems too. It’s like I can stand right in front of him and he can see straight through me. Thank you for the link!

@Erica_Rachelle I really hope you can find someone to offer you that coaching. You might have to go to a nearby city to get the help you need if you don’t live in one but it would likely be worth it.

Thank you, I do too. Yea, I live in a small town in Alabama that doesn’t offer much but I’m right on the Georgia line and I’m sure they have more options there than they do here.

@Erica_Rachelle: Here is a useful list of support by states:

http://www.autism-pdd.net/resources-by-state.html

You must become the expert, learn all there is to know, find other parents, etc.

Yes, this is great. Thank you very much. I am going to check out these sites now. Wish me luck!

Good Luck!

You may also find it helpful to read some if the books written by Temple Grandin. I know she has written one which is particularly focused on giving parents guidance on what things would be most helpful for parents of these children to focus upon.

She herself is an adult on the autism spectrum and she is kind of like a “translator” between the two worlds, letting people know what it’s like from the experience of someone growing up with these deficits.

You’re not alone; it’s more prevalent than most realize; a good thing you’re detecting it early-your chances of introducing therapies and helping recovery are significantly higher with early detection before age 6.

autismspeaks.org
http://www.defeatautismnow.com/
taca.org

These are but a few resources to get you started-educate yourself so you can make informed decisions.

In most states there are regional centers for implementing special education (local plan areas, or SELPAs). You need to get your little one evaluated by qualified psychologists to determine the correct diagnosis, and also, to research social, behavioral, sensory, and developmental options for him/her.

Also, DAN protocol and others support researching other avenues, including physicians that support alternative therapies (homeopathy for example) that may present biomedical options to supplement behavioral treatment.

Upon evaluation through our regional center, our son qualified for early start programs which were funded regionally (through our county), enabling us to get in-home behavioral, occupational therapy and other information/education.

Good luck and stay positive; your little one is a blessing and miracle, and our has taught us so much!

Buttonstc..that sounds like something I would be very interested in reading. I saw an author named Dave Angel who also writes on this but I think it would be much more insightful and moving to hear from someone who’s actually been there. Thank you!!!
I’m going to check on that!!

SndfreQ..thank you for the links. I will most definitely be going there too. Could you tell me a little more by what you mean about the biomedical options? He’s in an early intervention group right now and I would like to understand more of what other things there are. I’m just starting to learn about all of this so it’s still very new to me.

I don’t have anything to add but wanted to send some jelly support. :-)

I second the DAN site, mentioned by sndfreq, “Defeat Autism Now”: It gives you names of doctors who specialise in pediatric autism treatments and diagnoses.
http://www.autism.com/dan/index.htm

It is water under the bridge, but I wish that your primary care physician had been more insistent.

I worked with a 10 year old boy with Asperger’s over the summer. From my experience, it was very hard to keep patience with him, and I’m a pretty patient person. That part may have been his personality more than the Asperger’s though. And your son is much younger. But generally, as with any form of Autism their social proprieties are off. With Asperger’s especially, they connect to one interest and that becomes their world (I’m speaking layman’s terms with all of this, I’m not a professional so excuse me) But their minds really seem to be one tracked, especially when they connect to that one interest. I would try to have a conversation with the boy, asking how his day went and he would have no interest, would be rude, just not respond, and if he had a bad day..get out of his way..on his good days he was nicer and more receptive. His interest was in computers and electronics and once started on them, he wouldn’t stop talking and would tune me out if I tried to relate to anything else. The websites given to you will probably be much more helpful than anything I say but I must say a lot of patience and empathy and understanding comes with dealing with any child with autism. I’ve worked with a lot of kids who have autism, only one with Asperger’s but if you have anything to ask, go right ahead.

Biomedical options are usually those that treat the underlying sources that cause the erratic behaviors and physical symptoms. Diet, metabolism, allergies, and mitigating exposure to environmental toxins, are examples of areas that are the focus for biomedical treatments. There are literally dozens of various kinds of treatments that are pharmaceutical, homeopathic, and dietary that are available, and it all depends on the very intricate and “unique” set of characteristics that the autistic child presents; as you read up you will learn about the “spectrum,” and it will become clear that the condition of ASD has many root causes and equally numerous approaches to cognitive, behavioral, medical, and environmental therapies.

Maybe the short answer to your follow-up should have been: biomedical options tend to look outside of solely pharmaceutical options (Ritalin, for example), that mask symptoms, and instead go after the root causes (especially the biological aspects of the condition).

onesecondregrets..What you were saying sounded a lot like Tyler. He isn’t anymore but he was for the longest time OBSESSED with golf. Playing it, watching it, somewhat talking about it (he doesn’t make many sentences, just really excited words) and all of that to me was weird for his age. He started playing it and watching it at 13 months..he couldn’t walk yet so I guess he had to focus his attention on something. A few months ago, it just suddenly stopped. I didn’t know if that was a good or bad thing..but anyways..yea he is a very sweet child but it’s hard to get him to respond sometimes. I can be screaming his name and it’s like he doesn’t hear me or doesn’t care. One thing I would love to know is have you ever seen a child that spins in circles constantly? At first I thought it was that he just discovered he could make himself dizzy..but it’s def. more than that it’s like something he has to do or something. He also kicks his legs and flaps his arms when he’s excited.

sndfreQ..Okay that makes a lot of sense to me now. Thank you.

Repititious or obsessive behavior is common. So is being distracted by some activity. My grand-nephew will run a toy truck back and forth for hours if not stopped.

Tyler met with an early intervention worker today and what you said your grand-nephew had PDD-NOS (for Pervasive Developmental Disorder-Not Otherwise Specified) is that just meaning in the spectrum but not necessarily autism or asperger’s? Because I think that is what she was leaning towards. I went to the DefeatAutismNow site and I am gonna go to the next conference in February.

Thank you so much sndfreQ when I went to that site it all seemed so clear to me.

I am going to the next conference in February 2010.

@Erica_Rachelle: That is wonderful; in the meantime try to find families near you for support and shared info. There is such a sad rise in the number of kids being diagnosed with some form of problems on the autistic spectrum (acc’ding to the CDC, it is now 1 in 91) that you should be able to find these families. If there are no neighbors, go to the online forums.

The early diagnoses are confusing. Pervasie Developmental Disorder…what does that mean? I have no idea. But when I watch and try to play with my grand-nephew, his behavior is clearly not that of a typical four-year old.

@gailcalled I’ve been asking and looking around. One of my close friends from high school has a son with some of the same problems, but he doesn’t seem different to me. I don’t know, maybe I’m not around him enough. My early intervention people told me that I may be the only one to ever see the difference and I hope that is true, especially for when he starts school. Whatever Tyler has I believe is not severe, thankfully.

@Erica_Rachelle: I hope, along with you, that you are right. But make sure that some help or intervention won’t better things for Tyler. The therapists trained in this area do pretty benign activities and can make judgments because of all the children they have worked with.

I would listen to your instincts about your own child. How does your friend’s son get along socially? Does he have close friends; is he starting to date or be interest in girls? I had a HS classmate who had Asperger’s only we didn’t call it that in those days. He was always among the top five academically in the class but socially what we used to call “weird.” He stared into space a lot, bit his nails really badly and turned out to be a computer genius hired by the military, with no partner or intimate life ever.

Insight into AS…. does the fact that I have lived with it for 36 years (so far) qualify?

I second button’s recommendation on reading the works of Dr. Temple Grandin. “Look Me in the Eye” by John Elder Robison may also help.

Unfortunately, ASDs cover a pretty wide range and even if they narrow it down to a particular sub-type (HFA, AS…) there is still a wide variation between them. I know many other Aspies and trust me, there is a little less commonality than you may think.

I am the Mother of a Nineteen Year old Autistic young Man . I am a member of autismsuportnetwork.com My group is Coping with Daily challenges. I think you may find information by speaking to my group.
In addtion there is also autismsociety.org (800) 328–8476 They are a national organization .

I’m a 55 year old with Aspergers who happens to also have a PhD in Early Childhood Developmental Psychology. I can tell you that for all your child’s and your challenges in the past, present and future there is great benefit! Your child can achieve success every day through your helping to challenge just a little beyond the comfort zone. Repetition of mild discomfort helps in understanding events and situations. Also, please consider that children and adults with this “blessing” need to think procedurally so practice needs to have stages and guiding speech. Also… we are literal and think through pictures more than words or text. Have fun! This is an adventure and I thank God everyday that my mother worked so closely with me and never gave up! Parents are Angels for kids with Aspergers… they should not be Saviors who protect so the child does not become frustrated. Discomfort is the driver of learning. Aspies don’t like change or challenge but it is part of growing up and learning to be independent. A little frustration with options for solution always benefits a child!