Diagnosis for my younger son.

[JSUPreston]

My younger son was recently tested for autism. Last night, we found out accidentally (not supposed to know until a meeting on Thurs.) that he has been diagnosed ASD-NOS (autistic spectrum disorder not otherwise specified). My wife and I have suspected that he was autistic for many years, but no one around here took us seriously until just the past year or so. He is very high fuctioning (incredible with math, video games, computer, etc.), but displays a lot of the classic sypmtoms: lack of social skills, very limited diet, trouble with verbal communication, etc.

Anyway, I am wondering if any of you guys are dealing/have dealt with this and have any advice or warnings as to what to expect. Right now, even though we "knew," actually being told that we were right has us so shell shocked I don't even know what questions I need to ask.

To tell y'all how I reacted last night: I was about to put on my Cubmaster uniform to go to the Pack Meeting last night when we got word. I thought about not going, but decided to ask the kids, since it was our Christmas Party Pack Meeting. Of course, both boys wanted to go, so I told them to go put on their "Class A's."

As soon as I got mine on, the little one came to the door with his shirt put on the best he could. I just had to walk into my bathroom and cry for about 5 minutes, because seeing him like that is when it really hit me. Any other time, I would've just laughed it off and helped him, but I couldn't do it...I just lost it.

It doesn't help that our older son has been diagnosed with childhood bipolar. He's such a handfull that most days it wears both of us out just dealing with him. They say "the Lord doesn't give you more than you can handle." If that is true, which I hope it is, the Lord has a whole lot more faith in me that I do right now. On top of this, my wife is dealing with this being the first Christmas without her last living grandparent, along with her own issues. Makes it hard right now.

Sorry to spill on you guys...originally just wanted to ask for some advice, but needed to let a little out as well.

[dewi1219]

My wife is an exceptional ed teacher specializing in autism and developmental disorders. I'll get some input from her. How old is your son?

[cabinetman]

Your son needs your support. "What you can handle" may surprise you if you concentrate more on getting help and positively addressing the problem, and not centering on what it may appear to present.

Children are more perceptive than we may realize.
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[Alex Franke]

Wow -- I'm so sorry. That has got to be tough -- I can't even imagine.

I read an article very recently about a study that concluded that working with autistic kids early and intensively can dramatically improve their social skills. I'll look for the article. I also read recently some organization(s?) is linking up some huge databases of autism research to enable further research and (hopefully) advances. I think this is a great sign -- the more researchers have access to complete data, they better they are able to make new discoveries.

Hang in there. You'll all be in our thoughts and prayers.

[dbhost]

A good friend of mine has a son with a high functioning version of Autism called Aspbergers Syndrome (I probably misspelled that). I will see if he can drop me some tips on the issue.

I am pretty sure there are parental support groups online for children with Autism. Hopefully they will be able to share some of that info too...

[JSUPreston]

Thanks for all the thoughts and prayers. To answer one of the questions, he turns 8 in Jan., and except for the constant fighting with his older brother, he is a joy to be around. I told my wife last week that he has more Christmas spirit and joy in his little finger than I have.

[Richard in Smithville]

My nephew was born with very severe cerebral palsey. He is limited in speech and needs some one to help him with the most basic of tasks. he gets frustrated to no end. What we have learned is to let him try to be like any other five year old boy and to be there to help him where he needs it. The hardest thing is getting his grandfather to stop doing everything for him.

It takes a lot to raise a child with a disability so never be afraid to ask for help or feel bad about yourself if you need to step back for a moment.

[RAFlorida]

He needs you and you need him.

It's sad to have illness as such within a family. Prayers and thoughts your way for you and family and son. When you said you lost it, it hit me too. There's many here on this forum to help you. Wish I could, but I don't know anything about that problem.

[Uncle Cracker]

My ex is the caregiver for our eldest grandson, who is low-functioning/autistic/delayed. He just turned 13, and has lived with her since he was 6, and it was discovered that his mother isolated him and beat the he11 out of him. (Mother and father have been out of the picture since then). One of the first things we discovered is that each individual presents in a different way. We are very fortunate that our grandson is loving, social, and not self-destructive. But he is also non-verbal, destructive of anything made of cloth or paper, and even with 7 years of patient and diligent therapy, not yet potty trained. But despite his low-functioning, he wants little more than to be around those he loves, and wants desperately to be a good boy and please everyone. The little "victories" are truly blessings, and his happiness is reward enough for us. And wickedly, infectiously happy he is. He cannot speak our language, so we learned to speak his. It is not difficult if you are observant.

The gist of it is that your son will be different in many ways, and similar in many others, to others in his situation. There is no need to feel sorry for him, nor for yourselves (it doesn't help), but just to love him and do the best that you can for him. There are many caring professionals and para-professionals out there than can help you with your needs, especially now since autism has become so much more prevalent of late. He is high-functioning, so there is no reason to feel like he will always be needy or in some way diminished. You will all learn to live with his condition, and someday you may find yourselves talking about it in the past tense. Even the finest medical professionals will tell you that there is still so much they don't know, but progress is being made every day. Take the challenge... learn as much as you are able, and just be there for your son. Try not to be frustrated. If you are a spiritual person, understand that God has brought you together for a reason... because you can help each other. And cherish every smile, every hug, every minute.

Best of fortunes to you and yours... Feel free to PM me if you would like to ask any questions or just need to unload some more.

[cgallery]

I have no advice but I do have some encouragement.

I know families w/ autistic (highly functioning, I guess you'd say) young adult children. While the "kids" do live at home, the parents lead very normal lives. In both cases (the families I'm aware of), the parents and children are best friends. There is something actually quite magical about their relationships.

On the bipolar issue, you should be aware that many of the world's most successful individuals (business people, politicians, etc.) are (and have been) bipolar. The history books are full of them. They tend to be extremely productive in their manic phases. They went into this on an episode of (I think) Nova, where they were discussing such disorders. You can google for more on this topic.

I know two highly successful business people that I'm almost 100% certain are bipolar.

[MilDoc]

It really depends a lot on functional level. ABA Therapy (Applied Behavioral Analysis) is the most successful treatment for the moderately affected, especially for those that can communicate, but provides benefits to those who are non-verbal also.

http://www.centerforautism.com/getting_started/aba.asp

The best choice, if he hasn't been seen by a Developmental Pediatrician, is to start there.

[Hoakie]

My oldest son is diagnosed with high-functioning autism, non-verbal learning disorder and ADHD. He is very bright like yours an avid reader, creative story writhing/telling, skilled on computers, computer games and animals. He does very well with adults since he appeals to their intellectual side and with kids much younger than him due to his social immaturity. His biggest issues are with dealing with crowded social situations, peer interactions and authority. He has a real tough time reading body language and vocal cues. He has really struggled in the public school system because of the loud crowded atmosphere and the peer issues. Fortunately my wife has a teaching degree and we have been able to homeschool him for the past two years. This has been going very well and he is now showing some interest in giving public school another shot now that he is more mature and better has developed better coping skills.

I think the advice here has been good. You need to put aside any preconcived notions about how you think things might have been because everyday will bring a new set of triumphs and setbacks. I love my boy to bits but I do get frustrated that I can not relate to him all the time or know what might "set him off" any given day. Be patient, give him all your love and try and give him as normal exposure as you can but be prepared to pick your battles. For instance, if we are going out, my son does not "like" to wear a coat, even when it is -10 out. We have decided that we don't need to force him to wear it but he must bring it along for safety reasons if we get stuck.

I don't know how old he is but I would also work hard to try and get him accomodations in school. Since he has difficulty handwriting and tracking we were able the amount of handwritten tasks reduced to a minimum and the allowed him to take spelling tests, etc. verbally.

Hope this helps and if you need someone to bounce ideas off of please don't hesitate to contact me

[JSUPreston]

Thank you all for the advice and experiences you have shared. I will definately read and re-read this thread and may send a PM or two as well.

I also have to apologize a little. Even though we "knew" he was probably autistic before he was tested, finding out was like a ton of bricks hitting us. I had to take a couple of days away from this thread to let things settle for me before I could read all the posts.

I'm looking into developmental pediatricians in my area, and as soon as the school year starts back in Jan., the folks at his school are going to come up with a new Indvidual Education Plan (IEP) that addresses his needs. We will probably put him back in OT with a lady here in town that is supposedly very good with autistic children.

When we went for the official meeting, they were giving us so much information on the testing, that I almost quoted Ed Harris from Apollo 13, "Don't give me the whole Bible, just a chapter or two." If the benchmark for the testing used around here was something like 3 for autistic spectrum, and 5 for autism, he would score a 10. It was very clear to the testers that he was autistic from the "get go," but they had to finish the testing. The one thing that baffled them a little, is that a couple of times he also showed some traits of Aspergers (as a side note, that is a HORRIBLE name). Then again, I think this proves what I've always thought...we can swap organs between people, reattach limbs and bring folks back from the brink of death, but when it comes to how the mind works, we're still in the "hunter/gather" stage of medical knowledge (no offense to any doctors meant).

We're going to definately work with our other son so that he understands what's going on, and why things may not seem "fair" at times. It's going to be a learning process for all of us.

Once again, thanks to you guys for all the info and the advice. My wife and I appreciate it. Just so y'all know, we're going to be contacting the Easter Seals soon as well as getting in with a couple of support groups that some friends have recommended. I've also talked with the Clinical Director of my group plan, and may be able to work out some accomodations from insurance as well.

[MilDoc]

I hope you can find a good developmental ped doc. Any large medical centers or Children's Hospitals near you? they usualy have a multi-specialty autism clinic.

And please don't fall for the $$$$$$$ lab tests and "therapies" so-called DAN docs offer. In my clinic I now have 19 autistic kids, from very low to high functioning. Some have gone to DAN docs, and I have yet to see that stuff do more than make the docs rich.