Aspberger's questions

[Jan in SC]

My oldest son, who is 8, shows lots of the signs of Aspberger's. He has some lds and anxiety that we are dealing with in fairly effective ways. He has tons of trouble reading social situations, but really wants to be involved. He is very "hands on" and has trouble knowing when others are giving him the back-off clues. He shows many of the other signs I find listed on different websites.

 

My question(s)... is there a need to get him evaluated and possibly diagnosed? I have no issues with the idea, but is there anything that can be done? Do I just continue to adapt curriculum and social settings as needed?

 

This week has been very tough. He tries so hard and is a genuinely kind and loving child and to see other children misinterpret him is just heartbreaking. I don't want to lock him away and make the problem worse, though!

 

Thanks! (Just ignore the spelling in the title, please!!!)

[Niffercoo]

Jan, my son was diagnosed with Aspergers when he was 10, and I think it's very important to get a diagnosis. There is MUCH that can be done to help our children not just compensate for their special needs, but also to treat the underlying core deficits of the autism spectrum.

 

We use RDI (Relationship Development Intervention) for our therapy program. I learned about it through a lady who posted on these boards, and we've been using it for about 15 months and are seeing excellent results. It is not easy, but it has been well worth it! You can get more information about RDI at their website: www.rdiconnect.com

 

When my son was 9, we had just gotten the autism diagnosis for his baby sister. As we learned more about the autism spectrum, we recognized that Aspergers was what had been going on with Austin all these years. It explained stuff that we thought was "just Austin". But since we'd gone so long without a diagnosis, we didn't think we needed to run out and get one. It wasn't until Austin started labeling himself as stupid, or a baby, or dumb, that we knew we needed to get an official diagnosis and get some help. It helped Austin to know that there is a reason for the way he reacts (or in many situations, used to react).

 

So yeah, I think you should go for the diagnosis and therapy (not just RDI, but perhaps OT, ST, etc.).

[...................]

We did not get our diagnosis on paper. We did not want that paper trail for him, especially since we "caught it" early on and have lessened many of the behaviors that showed up. This way if we ever had to put him in school, he would hopefully be streamlined instead of put in special ed. He is smart, and if we are careful to work with him, he may be okay in regular classes.

 

When we had him evaluated, he was diagnosed with mild asperger's and PDD-NOS, sensory integration disorder.

 

It's been helpful for me. I denied it for a long time, and just thought of him as weird or different. And I also lost my temper a LOT with him. Now that I have come to the understanding that God really made him *quite* different, and that it's my job to work with that difference, it is easier for me not to get mad at him. It's also easier for me to know how to treat him, how to research things, what things need to be treated and dealt with, and what things may go away.

 

Also oddly enough he definitely goes through seasons. It seems that growth spurts bring on major increase in Asperger's symptoms. 5 months ago he seemed almost completely normal and was doing great socially, etc.

 

Then he began a growth spurt and along with it came crying tantrums, increased obsessiveness, more difficulty making eye contact, even more trouble with social, space issues, and Pallilia (repeating one's own self in an inaudible whisper.)

 

Now I am just doing research about Asperger's again, and making charts for behavior all over again. I've realized now that this will never compeltely go away and take an awful lot of work and effort on my part to make sure that these behaviors are dealt with. He will always have Aspergers but he will not always *do* the behaviors associated with Aspergers, and he *does* need to learn about himself, and how to make it so that he can be socially adjusted.

 

My sister finally got brave enough to ask what was "wrong" with him, (we have a great relationship and I love her and she loves my kid so I was not offended at all) and I finally told her about it. I am doing research and plan to send her the wikipedia article, etc. My BIL also asked about him and sometimes it's good to let people know that yeah, something is different, but we don't have our heads in the sand- we're working on it and aware of it.

 

So a diagnosis is also good for your family- otherwise they may assume that you just totally are in denial and then they will worry.

 

And lastly, you may want to hire behavioral therapy from time to time. So far we have not needed it but I may call them if he doesn't grow out of the Pallilia. They are expensive, but it's great to have someone work with your child, and teach you how to do so in between sessions.

 

I personally prefer behavioral therapy over Neurologists, because they aren't even sure *how* autism happens in the brain. So why would I go to a brain doctor about an incurable disease that's not a disease, and that he's not even sure how it happens? I prefer a psychologist or a Behavioral Therapy center- we contacted an autism center for behavioral therapy and they truly were wonderful.

 

It makes me so sad-- I saw a mom with her autistic child, and the child could and did speak but also was sucking on a pacifier at 5, rubbing her saliva over her face, making bubbles, and throwing tantrums. The moms completely ignored all behavior and did not address it. To make it worse she did not speak one word to her little one about anything in 1./5 hours in the store. I understood why maybe she didn't address the pacifier. drool- because that could be a big one hour battle. I've been there. But one thing the behavioral therapist drilled into me, is that parents of autistic children must be

 

A. Ready to start and win battles of the will sometimes

B. Draw out their children - speak to them even if it doesn't seem to register

C. Deal with social situations...

 

In short, work, work, work, work, work, work--and if you have a child with Aspergers, which is fairly mild, and you work very very hard at behavior and social etiquette your child will have a very good chance of living and functioning happily in maintstream society.

 

Okay that's my book. Sorry so long!

[Jan in SC]

Thank you both so much!

[asta]

I personally prefer behavioral therapy over Neurologists, because they aren't even sure *how* autism happens in the brain. So why would I go to a brain doctor about an incurable disease that's not a disease, and that he's not even sure how it happens? I prefer a psychologist or a Behavioral Therapy center- we contacted an autism center for behavioral therapy and they truly were wonderful.

 

 

If you take one piece of information away from the thousands of bits people will give you on your journey, let it be this bit from CalmingTea.

 

Autism Spectrum Disorders are not a disease, they are a different wiring of the brain.

 

You don't "cure" your basic self. You simply learn to navigate a different road map.

 

 

asta