Asperger's syndrome resources?

story1267

story1267

Cathlete
For those of you out there parenting a kid (or kids) on the spectrum, what are your favorite books and websites?

In my ongoing journey to figure out what us UP with my precious DD we recently saw a pedi neurologist who has said the word "Asperger's" out loud to me.

Now, we've had this child neuropsych tested within an inch of her life, and she already carries a host of other dx's, ADHD, executive function, NVLD, mood disorder....and we've been told that she's a spectrum-y type of kid but nobody has ever labeled her thusly.

DS has PDD and, in the way that siblings are different, he is completely different than her so I never really put the pieces together that she's Asperger's-y.

I have a book...Asperger Syndrome and Difficult Moments by Brenda Smith Myles and Jack Southwick and there are lights and bells going off in my head - that's her! that's her!

So, I'm reaching out to see what words of wisdom some of you other Mom's might have. I'm trying not to freak out that I couldn't manage to get 2 + 2 added together prior to this - it might have saved us some pain along the way but.....oh, this poor kid...she's had it so hard.
 
Just curious how old is she? My daughter - almost 10 - has a lot of autism traits but is lacking just enough to officially be put on the spectrum. Although most of her therapists think it's pretty obvious. According to the recent neuropsych, she is "very uniquely wired." Duh!! She does have a PDD-NOS, ADD (not ADHD), and learning disability diagnosis. I got a book on Aspergers and non-verbal learning disorders. They are very alike but apparently do differ a bit. We're supposed to see a neurologist in July but I'm hesitant. What's the point? We've done a full medical work up. She's had OT, is seeing a counselor for social skills, and does therapeutic riding, which is awesome. Honestly the most helpful books I've read are ones about sensory integration. They helped me understand her and figure out things to do to maker her more comfortable.

Jen
 
Jen, she's 15. We started with the ADHD diagnosis back in 2nd grade and it's been a struggle ever since to understand how to help her.

She's disorganized, rigid in her thinking, socially under-developed, major attention issues, some sensory issues, anxiety, BUT she's much more auditory than visual, she doesn't have obvious repetitive behaviors, etc. She walks the line.

I spoke with our school advocate, who does our testing, and she wasn't sure - she said they do test very carefully for Asperger's and that wasn't what they found.

I don't know. What I'm looking for is strategies to help the world be less hard for this kid.

She did horseback riding therapy too! It was good except even the therapists would be frustrated because she wouldn't (couldn't) remember instruction from one week to the next!

I think I may have a case of duelling professional opinions. Since I don't think the neurologist "believes" in NVLD. But.....Asperger's has a huge non-verbal component....it may be tomayto - tomahto.

I honestly don't care WHAT we call it as long as I can find out some way to actually help her.
 
Tony Attwood and Temple Grandin. I've seen them both speak and their books are amazing references on Autism.
PDD NOS is pretty much on the Autism spectrum. It pretty much means that your child is exhibiting some if not most but not all the symptoms that "qualify" him/her to be on the spectrum.
http://www.autismspeaks.org/index.php
Get another opinion, . . and then get another opinion after that. Make sure to go to Dr.'s and Dr.'s only. Do your research on the Dr.'s get reccomendations. Not all Dr.'s should be Dr.'s and not all of them are good. The sooner the better. When my son was first diagnoised when he was 2 it was PDD and developmental language delay, and then it was high functioning autism.
The first step is really for parents to accept and greive over the diagnosis. It is a very normal response. Then snap out of it, . . realize all the joy that your child has brought you and understand that they are a wonderful joy and that they fill our lives with an unexplainable happiness. Next get as much support as you can and educate yourself. Then educate yourself again. Start a file. Make copies, . . . .and ask questions always ask questions. Hang in there. There IS support and there is so much more out there as much as options on therapy.
 
I like autism-pdd.net. wrongplanet.com and another one I forget with a really educated parent crowd that are super in the know and into diet and therapies

I like the book high functioning autism and asperger's sydrome by a lady doctor from the MIND institute. I forgot her name sorry.

What I have learned for my sanity is that a certain laundry list of dx's pretty much equals being on the spectrum especially if the dxing dr doesnot specialize in hfa. I got my dx from the MIND inst. The best on this side of the mississippi. If I had a dime for every arm chair expert that doubted the dx I would be crazy. I know and my dr. knew.
 
pinkquinn said:
. I got my dx from the MIND inst. The best on this side of the mississippi.
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Wow. It is really hard to get into the MIND institute but if you can, . . . you are very lucky. Those Dr.'s really work for the cause. The first MIND institute started here in Davis California by a parent whose child has autism. It is a very excellent resource.
 
I second Temple Grandin and Tony Attwood. I've had the pleasure of hearing Temple Grandin speak and am thankful for the experience.

My DS, now 18, was not diagnosed until he was in fourth grade and that was after *I* had figured out what was going on. His journey sounds similar to your DDs. I had him in the pediatricians office when he was 3 because I knew that something was not quite right. I mentioned to the Dr. that I thought he might be autistic, but the suggestion was dismissed because DS let me hug him..... Umm. OK. Instead, we went for a series of hearing tests and speech therapies. Eventually, he was labeled as ADHD and we went down the ritalin path. Not good.

As soon as the correct diagnosis was officially made it helped my son tremendously since we were then able to identify and request the proper services and accomodations from the school system, plus we were able to stop pulling our hair out in frustration with him.

He has struggled socially, but has come quite a long way. He'll graduate this spring and will be heading to a local community college in the fall. I think joining the x-country and track teams has been one of the best choices he has ever made. Temple Grandin said that hard physical exercise was crucial for these types of children, and I definitely saw positive changes in certain behaviors once my DS started running 6 days a week.

Good luck to you and your DD! I'm so sorry she has had a difficult time. I do understand, not from her pespective, but from yours at least. Hugs to both of you!! Please let me know if there is any other information that I might provide.
 
I watched some of Temple's talks on Youtube. It helped me understand my daughter's mind a bit more. And I don't care what they call it either! I'm sorry to hear the therapists at riding got frustrated. They shouldn't. They should be used to these kids. Our place is a licensed hippotherapy school.

Our school was great putting a 504 in place. We may move up to an IEP just because of math. Are you seeing a counselor for the social skills? The book I have on aspergers/NVLD is really helpful. And just understanding the sensory component helped me put things in place to make her more comfortable.

Your daughter sounds a lot like mine. I have an Rx for meds for the ADD but haven't filled it.

Jen
 
Re: Aspergers

Michelle Garcia Winters has a ton of stuff on social skills for Asperger types.

I tend to think of aspergers as a compilation of a lot of other things you mentioned she had.

If she has any gastro intestinal issues, you may look into biomedical therapy for Autism spectrum...or if she has odd eating habits, such as really loving wheat, dairy, or sugar especially much. A great website for that is www.tacanow.com It made a world of difference for us.

Jen
 
Wow! Thanks everyone for your input. My evening got away from me and I just now had a chance to check in before heading to bed.

I'll look more closely tomorrow afternoon.

You all are the greatest!!!!!
 
mjd said:
You might be interested in watching this:-

http://www.abc.net.au/compass/s2867063.htm

It's a tv program that was on here (Australia) last night - all about a group of adults with Aspergers and/or HFA.

mjd
mom to ASD child
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Thanks! I'll take a look at that later on. I've been spending some time roaming around wrongplanet.net - great website. And I joined AANE (local Asperger's group) and I'm waiting to get onto the parent of teen forum there.

Another visit with the neurologist today...and then, who knows? I honestly feel like I'm making this all up from scratch each day.

It's good to see so much info out there now. There was so little (plus I was limited by dial-up internet) in the early days when DS got his dx.
 
Another vote for Tony Atwood, Temple Grandin, and Michelle Garcia Winters.

And many blessings on your journey. We, too, went through a grieving process. It helped to realize that our son was the same kid that we loved before. Nothing in him had changed. It was just a new label. And that label actually gave us some new resources to help him. But, yes, it is very hard to hear the word "Aspergers" at first.

Another precious book that has helped us see DS's strengths is called The Myriad Gifts of Asperger's Syndrome. I forget the author. But it's a wonderful collection of stories and anecdotes about remarkable contributions made by kids with Aspergers. It is delightful and really helped me learn to celebrate the strengths of DS, and not just see Aspergers as a set of challenges.
 
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